Liz Farmer




University College Plymouth

St Mark & St John

Working Together?

Exploring the relationships between parent carers

of disabled children and other professionals,

when working together in planning,

consultation and delivery of services.



List of tables                                                                                                 Page 2

Author’s statement of originality                                                          Page  3

Acknowledgements                                                                                   Page  4

Abstract                                                                                                        Page  5

Introduction                                                                                                            Page  6

Ethics                                                                                                             Page 11

Methodology and methods                                                                    Page 13

Practitioner research                                                                                Page 20

Data collection                                                                                            Page 24

Data analysis                                                                                               Page 36

Research findings                                                                                       Page 47

Working Together?  - The theory                                                                     Page 61

Discussion                                                                                                    Page 63

Conclusions                                                                                                  Page 71

References                                                                                                   Page  74

Appendices                                                                                                  Page 84







List of figures and tables

Table 1          Excerpt from interview (1)

Table 2          Excerpt from interview (2)

Table 3          Excerpt from coding for social justice (1)

Table 4          Lived experience

Table 5          Excerpt from coding for social justice (2)

Author’s statement of originality

I confirm that I have fully acknowledged all sources of information and help received and that where such acknowledgment is not made the work is my own.




With grateful thanks and appreciation to the parent carers who so generously gave of their time and themselves and to the Parent Carer Council for Cornwall.

Many thanks.


This dissertation explores the workplace relationships between parent carers of disabled children in Cornwall who are employed alongside professionals who may also be involved in delivering services to both their child and their family. The focus is upon the social justice dimensions of these working relationships and their impact upon practice.

This qualitative practitioner research project was carried out by a member of the group being studied – a parent carer of a disabled child employed within the specialist disability field – and utilised aspects of personal experience and reflexivity to enhance and inform the research process. A grounded theory approach was taken in which theoretical sampling was used to identify possible participants and simultaneous data collection and data analysis took place. The constructivist paradigm being used in which a deliberate, power sharing feminist stance was employed was demonstrated through collaborative meaning making and transparency of intention. Data was collected through semi structured interviews, a participant workshop and email activities whilst concurrent data analysis used open and axial coding and the constant comparative method to generate categories.

The theory generated by the data proposes that at points of struggle and conflict parent carers adopt a deliberately politicized identity in workplace relationships in response to the presence of dualistic disability models and the discourses of normality which work to oppress them. This identity is founded in the lived experience of parent carers which is perceived to be of higher value than theoretical qualifications, and is unavailable to those outside of the group.

The conclusion is drawn that an alternative position underpinned by a social justice approach to practice is possible in which equality, value and community well-being are key features. Workplace relationships can then achieve the purposes for which partnership and participation were designed.




Now I am famous...journalists consult Google before coming to talk to me and know every stupid thing I have said or written. And I know nothing about them! (Weldon 2008:23 emphasis added)


Research background and context

Working in partnership with parents is a principle which underpins current social work practice being initially outlined in the 1989 Children Act as a result of research which found such partnership working to be both more respectful and ‘more effective in meeting the needs of children’ (Sinclair & Grimshaw 1997:231). As recent guidance states –‘all services are now expected to consult with parents and involve them in planning and development’ (Contact a Family and Council for Disabled Children 2004:5). This expectation brings with it discourses centering on power, knowledge and trust, particularly when partnership ‘of any kind’ is erroneously understood to ‘be a good thing’ (Hughes 1992:24 cited in Christie and Mittler 1999:232) for when two parties are brought together as a result of legislation rather than through deliberate choice, an atmosphere of mutual distrust may colour the process unless specific action is taken to overcome this at the very start. As responsibility for this action lies, on the whole, with professionals who may find the process time-consuming and stressful (Contact a Family and Council for Disabled Children 2004:11) there is always the danger that, in some cases, this basic principle has evolved into an almost formulaic approach with differing levels of participation principally designed, it would seem, to allow workers to tick the box marked ‘participation with parents’. Whatever, the move towards partnership working with a real equality of participation and status (McMichael & Gilloran (1984) cited in Colyer et al 2006) is proving to be problematic in an arena where partnership is seen as ‘definitial chaos’ (Trelfa 2008). 

The legislation around parent participation has wider implications for practice than merely asking parents to take part in consultation and service development or delivery.  If parent carers are to be valued as people and acknowledged to be experts in themselves and their children (Moss 2007:39) then professionals need to move towards practice which enables them to take this stance in their assessments and day to day contacts with parent carers. Research found that parent carers’ ‘own knowledge and expertise in caring for their child and knowing his or her needs was being overlooked in favour of fixed professional views and procedures’ (Contact a Family and Council for Disabled Children 2004:10) therefore, key to changing practice lies in the support of the organisations and authorities who employ workers in theses roles, alongside regular training in anti-discriminatory modes of service delivery. The normative discourse of power and knowledge needs to be exchanged for that of awareness raising and transformation, where not only are imbalances of power noted but also challenged and openly articulated so that change can begin (Dalrymple and Burke 1995:15) and social justice can be enacted.

A social justice approach to practice is one in which all individuals are viewed as being intrinsically of equal worth, with equal rights to meet basic needs (Parsons :1996:17),  all are respected, have self respect and are able to access the widest spread of opportunities, and all relationships within such practice should be characterised by these clearly identifiable markers. However, whilst there is little doubt that the relationships between parents of disabled children and the professionals working with them are key in the successful delivery of services and positive outcomes, there is a growing body of evidence from professional practice, parental experience and the theoretical base available to illustrate the inequalities and injustices which often characterise these relationships - parent carer and professional interactions may ‘take place on an ideological battlefield’ (Goodley & Tregaskis 2006:637).  A broad look at this evidence shows that there are a number of practices, norms and modes which shape these relationships that need to be changed in order for children, families and professionals to benefit. Discourses of tragedy and blame - both personal and familial (Avery 1996:630) - drive a model of impairment as a deficit in need of ‘normalising’ through intervention (Scott-Hill 2004:88) whilst those of control, knowledge and respect sharply define the power imbalances inherent in the relationships (Read et al. 2006:23). Methods of practice which arise from a social justice approach, in contrast, seek to transform these relationships through discourses that emphasise the equal status of all – service users and providers alike, with shared aims and goals identified in true partnership (Land 1995:10)

So, if parent carer/professional relationships, whether thought of as participation or as partnership, are already a cause of tension on both sides, in a service field where working together is imposed for the financial benefit of organisations, what happens when these often contested (Goodley & Tregaskis 2006:644) relationships are formalised in situations where parent carers are employed alongside professionals involved in delivering services to families of disabled children, on equal terms with supposed equal status? This question formed the central focus of the project.

There is, within Cornwall, a recent trend for parent carers of disabled children to gain employment within the field of services to disabled children and their families perhaps in an attempt either to shape future provision in order that others have a more positive experience, or because, as those with real front line experience, they see themselves as the best people to both design and deliver services to this particular group. Volunteer opportunities currently abound within the county, particularly with the advent of the newly formed Association of Parent Trainers, whilst the high standard of the training and support available to parent carers prepares them for a variety of roles on steering groups and senior level management committees. The initiatives that arise from the influx of Aiming High (2008 DoH, DCSF) money have created a number of parent participation positions within the voluntary sector and it is inevitable then that parent carers are successful in applying for not only those positions but also for other vacancies within the specialist service sector, with both statutory and voluntary agencies.

As a practitioner whose journey into employment mirrored the path outlined above - a variety of voluntary positions within parent support groups followed by a training course designed to impart the skills required for a face to face befriending role, which then gave me the necessary confidence and experience to apply for a front line role in service delivery with a voluntary organisation – I found my biggest challenge to be very different from that which I expected and this was the possession of a visible dual identity – parent carer and professional. This placed me in an immediate position of disempowerment simply through my not being in possession of an equal level of personal information as others around the table had about me. This personal experience was the motivating force behind this research project and the aim was to explore in depth the personal experience of other parent carers who were also working as professionals, often in multi agency settings, whilst at the same time continuing to receive services to both their families and their child from the same agencies, teams and occasionally individual practitioners with whom they work.

A research project that arises from personal experience invites the accusation that ‘when researchers take [their] personal experience seriously and incorporate it into their work, [they] expose themselves to challenges of a lack of objectivity’ (Roberts 1981:15). However, this should not be a problem per se, as such experience can lead to ‘precious insights and perspectives hardly accessible for researchers unfamiliar with such topics’ (Mruck & Mey 2007:519). Research beginning from a personal position ‘values subjective experience’ (King 1994:21) and can quite safely be a ‘blend of intellectual question and a personal trouble’ (Reinharz 1992:260). The purpose then, of this research project was to capture the widest range of experience and opinion possible and, without pre-judging, to sort and build upon the data in order to produce a theory which articulates what it is like to be in this unique position of  parent carer and practitioner. A sense of collaborative enquiry framed the entire project and together, the aim was for us to identify the ways in which parent carers manage both their working relationships and their own personal identities, whilst in employment within a fairly closed and exclusive field of service provision.

Population sample and definitions

Parent carer:

If you are the parent of a child who has a physical or learning disability you are first and foremost a parent. However, a parent  in these circumstances you often find yourself with extra caring responsibilities and you are, therefore, also a "parent carer“


Disabled child(ren):

Children, aged 0-18, who receive services from Cornwall’s children’s service authority (CSA) as opposed to services from adult teams. These children are not defined as handicapped by their impairment, but in the modern sense of the disability movement emphasising how society disables through oppression (Morris 1993).


Only the experience of practitioners working within specialist rather than universal services was included in the research. This means any specialist provision designed solely for children with a recognised impairment and/or their families, including:  Special Education; children with disabilities social work teams; specialist health services/nurses; palliative care services; sibling services; specialist childcare and short breaks provision (respite).Therefore, the only people invited to participate in the study were parent carers of disabled children, in paid employment in a specialist service field in Cornwall.

Sample :

In the very small world of parent carer practitioners in Cornwall, it was hoped to reach the majority of potential respondents to invite them to join the research. An initial group of sixteen eligible candidates was identified and this was then expanded through networking and snowballing to a total of twenty one possible participants. Through a variety of data collection methods (see data collection) fourteen parent carers participated in the research. This small number is in no way meant to be representative of either the general population, or of parent carers, or even practitioners within the service field, it was simply the population available at that point to be included in the study.

Limited demographic information was collected as part of the informed consent including gender of participant, age of child and some employment information. This data established that all participants were female and had children in primary school education. Anecdotal data – not recorded – revealed the majority of children attended mainstream schools with support and all had statements of Special Educational Need. Throughout the study, attempts were made to identify eligible fathers of disabled children and there were hopes that this was successful. However one had a child who was over eighteen years of age and the second worked within universal services making neither of them suitable for this particular study. All the participants knew one another, both as parent carers, and in their employed roles, and all of them had worked with me at some point.





With regard to excellence, it is not enough to know, but we must try to have and use it (Aristotle)

Ethical approval was sought from the University’s Ethics board and this was granted with BASW (British Social Work) ethical guidelines being followed along with those of the university. (Appendix ) This approval was needed as the research involved living humans who could potentially experience distress or anxiety as a result of taking part in the project.

There are particular issues which arise from the population sample available to take part in the research, primarily centring upon the difficulties of ensuring anonymity and confidentiality within a group who, through high levels of prior contact, are easily identifiable, both inside and often outside the confines of the group (Fox et al. 2007:103) and this was an important consideration in the data collection process which impacted upon much of the research design. Distinctive voices needed to be obscured and recognisable features were blurred which meant that participant responses could not be used directly in the publishable body of the research. The data was anonymised at the secondary/axial coding stage whilst only a consensus of opinion was recorded from the later workshop. However, as this was primarily a project produced for academic rather than commercial purposes, with a limited intended readership, it was felt that this would give enough protection to participant identity. The potentially oppressive effect that altering direct quotes may have (Devault 1990:107) was taken into account when making the decision to summarize the data used in the axial coding, but the ethical need to protect identity needed to remain the primary concern. The summarised data formed the basis of the workshop activities, which acted as a method of giving participants the opportunity to verify the interpretation made, but no changes were proposed.

Further issues centre upon the possibilities of conscientization (Friere 1998) as the research process may potentially reveal the oppressive character of some of the daily interactions of the working relationships under scrutiny. While awareness raising and a call to activism is outside of the intent of the research project, any research conducted from a feminist position will certainly be interested in the potential for change within the oppressive structures which surround and frame the research context. Practitioner research particularly is an ‘enterprise which in essence is about contributing to both transformation of practice and transformation of society’ (Mockler 2007:95). Concern for respondent well-being within a research paradigm which values the collaborative construction of knowledge precludes any attempts to retain the status quo in preference for embracing change. Thus the political well-being of respondents is as important as their psychological well-being and in reality the two cannot be separated as the personal is political (Nelson & Prilleltensky 2005:141).

Ethical issues for practitioner research begin with the difficulties that can surround being both practitioner and researcher at one and the same time within a field of practice. The recognition that this can throw doubt on the validity of the findings may suggest that research is best conducted outside that field (Fox et al 2007:104) yet I would find it hard to justify conducting this initial research outside of Cornwall, as for me, this is where the central focus of the research is situated. Secondly, because it would have been impossible to demarcate any switch between my practitioner and researcher roles, particularly with respondents who all know and have worked with me, I rejected any attempt to artificially create distance between my self and the respondents ‘in order to reduce the interviewer effect’ (Hyman et al 1954) so reviled in older texts. Any view of respondents as objectified sources of data to be exploited for my own ends (Oakley 1981:48) is necessarily at odds with the paradigm being employed in which egalitarian, non hierarchical relationships become the setting for information sharing and reciprocity. It was hoped that the participants would gain as much from the research experience as myself and to this end, I was happy to answer questions and respond to queries both during the interviews and in the workshop. These two data collection methods worked in some way to give the support and empowerment that parents carers are noted to receive through their interactions with one another (Goodley & Tregaskis 2006:641-2). To further embed this principle of the session as collaborative information sharing, resources were given at the conclusion of the workshop which pointed to some of the sources which had been used to shape the project. (Appendix 4)

Methodology and Methods

Research starts with a researcher who is interested in learning something new about a topic and developing a theory...(Mruck & Mey 2007:519)

Research Paradigms and Methodology

The complex relationship between methods and methodology is one which is vitally important for the novice researcher to grasp, outlining, as it does right at the beginning of a project, which direction the research is likely to take and what the final destination should look like (Harding 1987:2). When clear understanding of such a vital component of a project is needed, it is easy to imagine the response which came from turning over book after book that used the terms method and methodologies interchangeably to describe techniques and approaches of gathering the information needed to answer the research question. Disappointment soon gave way to irritation, after all, if ‘they’ didn’t know the difference, how was I supposed to? Happily, I soon worked out that very simply, my methodology would be the frame around my particular project and moreover, that this frame would consist of the perspectives and beliefs that I, as a practitioner researcher, would bring to bear upon the project as a whole (King 1994:20). Taking as my starting point the notion that ‘to ensure a strong research design, researchers must choose a research paradigm that is congruent with their beliefs about the nature of reality’ (Mills et al 2006:2), the initial strands of my framework needed to consist of the explicit articulation of my own beliefs about the nature of reality as pertaining to my practice. After all, my research methodology would reflect not only my purposes in research, but also my way of being in the world, and both needed to fit with the ways in which the study was going to be conducted (Corbin & Strauss 2008:1). In order to do this then, I needed to examine the values and beliefs that inform and underpin both my practice and my personal worldviews.

My understanding of parents of disabled children as a marginalised group who are identified solely by their child’s impairment (Farmer 2008a:9) is reflected in my practice in which my deliberate de-powering takes place in order that true partnership working can occur (Nelson & Prilleltensky 2005:43). This, then, enables problems to be defined and solutions to be found as parent carers and I work together (Pierson 2005:457). Alongside this, there is always a commitment to raising awareness of the often hidden inequalities that so often characterise relationships between parent carers and the professionals working with them. This conscientization (Friere 1998) - the process by which an ‘illuminating awareness’ of the social forces which shape reality is achieved (Nelson & Prilleltensky 2005:501) - in which individuals begin to view themselves as the agents of change to bring transformation to those unequal relationships of power, status and discrimination, is a vital component of any practice which makes claims to have social justice at its heart.  Linked with all these is the continual attention to how gender impacts upon parent carer/professional relationships in which the majority of parent carers are women functioning in the socially devalued role of caring (Williams 1999:5).  Finally, the commitment to reflexivity is demonstrated throughout my practice as I attempt to ensure that my own position and power, as both a parent carer and a professional, does not homogenise those I work with, but recognises difference, and aids giving voice to this difference  (Stone & Priestly 2001:704-5).

When these principles, which guide and underpin my practice, are transferred into the realm of research, they begin to form a framework in which all are able to participate in making meaning (Krauss 2005:762) as legitimate ‘knowers’ of the truth through lived experience (Barron 2006:202). This suggests both that there is neither one objective truth ‘out there’ to be discovered, but equally nor are there multiple truths depending upon where you stand. Rather that there is, indeed, a shared, but imperfectly understood reality which is constructed through daily experience and interaction (Kane & O’Reilly-de Brun 2001:18). This question of truth is further refined in that I am deliberately seeking out subjective truth as experienced by women, who, in general are the main carers of disabled children (Read 2000:51) although concerted attempts were made to find men who could participate in the project.. As this is a piece of practitioner research, I can therefore expect to see these values at play in the research paradigm being employed for the study. Accordingly, a non-hierarchical, interactive approach where all involved can be considered to be participants in the study (Campbell & Bunting (1991) cited in King 1994:20) aims to produce a project in which the participants’ voice can clearly be heard (Keddy 1992 cited in King 1994:20).

The epistemological principles of a feminist methodology according to Cook and Fonow (1990) correspond with my own values as stated above, with the addition of the concern for the ethical implications of any research project particularly surrounding women as legitimate possessors of knowledge. These basic principles of feminist methodology in research are that the influence of gender is acknowledged; the focus is on consciousness raising; personal grounded experiences are acknowledged as valid; the emphasis is on the empowerment of women and the transformation of patriarchal social structures and in which there is regard for the exploitation of women as the objects of research (Cook & Fonow 1990:72ff). Therefore, it can safely be surmised that my research project takes a feminist perspective from the outset.

In addition, the stated aim of my research design, that as a group of practitioner parent carers we could engage collaboratively in making meaning from our experiences and thus construct our reality together, demonstrates that a constructivist perspective (Guba & Lincoln 2005:183) was also an integral part of the study. In this approach, the researcher is fully part of the construction of the facts which make up the shared, but imperfectly understood reality which exists in our daily experience and interactions with one another as practitioners and parent carers (Kane & O’Reilly-de Brun 2001:18).


Research design

As Roberts (2007) notes, personal experience is often the starting point of feminist research, where researchers ‘start with an issue that bothers them personally and then use everything they can get hold of to study it ‘(Reinharz 1992:259) . That this is true in my case is clear from the introduction, which then led to the development of the research question – exploring the relationships between parent carers of disabled children and other professionals, when working together in planning, consultation and delivery of services.  The question then directed me towards finding a research method which would provide the data I needed to answer the question as ‘it is essential to ensure that the method matches the research question being asked’ (Baker et al 1992 cited in Wimpenny & Gass 2000:1485). The decision to conduct interviews rather than circulate questionnaires was a result again of the research question which did not lend itself easily to being ‘a problem to be tackled by [a] survey’ (Moser & Kalton 2004:73) but rather was an attempt to ‘begin with an area of inquiry and allow whatever is ...  relevant to emerge’ (Strauss & Corbin 1990 cited in Wimpenny & Gass 2000:1486).  The methods most likely to produce the type of data that I was looking for appeared to be either a phenomenological study or grounded theory as both are interpretive methods, addressing both questions of meaning  - what does it the experience of being both a parent carer of a disabled child and a professional working in that service mean to the participants – and of understanding  - how do participants understand and respond to this situation in their daily lives (Starks & Brown Trinidad 2007:1374). Both can use subjective experience as valid data, important when taking a feminist approach as outlined above, and both methods can accommodate the sometime intense, level of reflexivity required of practitioner research. It was this particular dimension of the study which enabled me to take a final decision, for if the research was to ‘assist me to reflect...and learn from [my] own practice’ (Fox et al. 2007:81) then the methods used needed to accurately reflect those used within my practice. The skills I brought to the study as a practitioner would therefore be the skills I used to explore the experience that I was interested in.  This was articulated in an email to my supervisor in which a rejection of phenomenology in favour of grounded theory as the method best suited to the study was justified:

Rationale: I feel ill equipped to use [phenomenology] for a number of reasons – 1) I am not a hugely skilled in depth interviewer. My skills lie in finding connections and links between things rather than in the sitting, being and listening that would be required if I were to take a phenomenological approach. 2) I am not really interested in individual experience per se, rather in the group experience of the phenomenon. Breadth of experience rather than depth is my aim so that concepts and links can be generated 3) I don’t want to ‘bracket off’ my own assumptions but use them as a resource and involve them in the theoretical sensitivity required by Grounded Theory. Email dated 16/10/2009




Grounded Theory

The rise of grounded theory as a research method from its conception in the 1960’s to the present day is well documented along with the various debates surrounding the progress or evolution of the method (Mills et al 2006:2). Some writers, Hood for example, argue for only a pure interpretation of the method to be classified as Grounded Theory (with capitalization to denote it as a proper name), with all other interpretations to be classified as research using grounded theory principles (Hood 2007:151ff). However, in her introduction to the 2008 edition of Basics of Qualitative Research, Juliet Corbin - long time associate of Anselm Strauss, co-founder of grounded theory -  highlights the outdated view that only one “grounded theory” approach is possible, instead many different approaches which aim to generate theory from data are now legitimately recognised as grounded theory, further noting that ‘each evolution has been an attempt to modernize or extend the original method, bringing it more into line with contemporary thought’ (p.viii). Corbin’s move away from ‘pure’ grounded theory was influenced by a belief that all theories are reflections of a researchers’ interpretation and position and are as such not to be taken as ‘categorical truth’ (p. ix).  The early focus in grounded theory of researcher objectivity is replaced by an awareness of the researcher being placed ‘right at the heart of the study’ with an aim that respondents would be enabled to ‘talk for themselves’ (ibid. p vii).

Chiovitti and Piran (2003) emphasise the need for a detailed explanation of the inquiry process used, for in grounded theory, as with all qualitative research, ‘there is more than one version of how researchers can go about implementing procedures’ (p 428). As this detail forms an essential part of the ongoing analytic cycle, it will be included in the data analysis and discussion. Nevertheless, a brief outline of the basic elements of grounded theory that were used in the study may be useful here.

Firstly, a research project utilising grounded theory has as its sole aim, the generation of a theory which gives a conceptual explanation (Holton 2007:268) of the research problem rather than seeking an answer to any predetermined research question. “Thick” or “rich” description of a phenomena or experience may often be a by product of the data collected, (Corbin & Strauss 2008:53-56) but to retain the title of grounded theory, the development of theory must always be the goal. This is achieved by developing increasingly abstract ideas about the research participants’ meanings, actions and words  and then searching out further data to confirm, expand and flesh out the categories which will eventually generate the theory (Charmaz 2005:508).  To do this, Charmaz proposes that grounded theory researchers need to remain close to their studied worlds (ibid) whilst at the same time acknowledging how their prior experience and tacit knowledge will impact upon the research world and thus affect the end theory (Cutcliffe 2000.1479). Secondly, a grounded theory research project can be used to collaboratively construct meaning from the data (Charmaz 2003:250)  and in doing so can make the invisible, visible (Lempert 2007:253) through giving true voice to those participating in the study. This view resonated with my own and confirmed grounded theory as providing the best fit for the study.

However, I was not unaware of the difficulties associated with attempting to use grounded theory. As a novice researcher, to attempt to generate an ‘integrated theoretical formulation’ (Corbin & Holt 2005:49) about a population where little theory already exists to guide and inform, could present a rather large undertaking. It went against any advice to begin with data that is close at hand and readily accessible; to select a topic appropriate to that data and not attempt to reinvent the wheel (Silverman 2000:28).Without pre existing theory or literature to link concepts and data to, there is a danger of simply producing lists describing the respondents experiences and not taking the analysis cycle to enough depth. Conversely, the danger is of rushing indiscriminately to theorising (Bryant & Charmaz 2007:14), again disregarding the depth of analysis required.

A further problematic feature of grounded theory is the ongoing ambiguity of the project in which final decisions regarding direction cannot be made until late on in the project (Morse 2009:18). This feature is one which novice researchers may find the hardest to live with and may result in attempts to ‘force’ the data into categories in order to find resolution (Glaser 1992b:23).

Finally, the role of the researcher in making meaning means there was always the danger that I would not find anything I did not want or expect to find, (Darlington & Scott 2002:17) through being selective in both my data collection and my coding. However, the use of an audit trail as a verification tool along with the peer and participant checking methods (see data analysis) made it unlikely that any obvious themes in the data could be overlooked. The more obvious danger was, in contrast, that I would find something completely unexpected through a deliberate, analytic respect for the data (Stern 2009:58) and would then be flummoxed as how to proceed with this. Indeed qualitative research can serve to reveal paradoxes and processes of which even the participants are unaware (Morse 1998 cited in Charmaz 2005:512 emphasis added), making the expectation of the unexpected an essential part of the project.

These difficulties were kept in mind throughout the duration of the research project and served as important points of reflection, demonstrating the reflexivity which characterises practitioner research.





Practitioner Research

My experience as a researcher has been a source of great reflection, inner struggle and ethical questioning. Some of the difficulty occurred because of my being a nurse as well as a researcher. At times I wondered if I was first a nurse and then a researcher, or first a researcher and then a nurse. Sometimes, the difficulty arose because of my experiences as a mother, wife, midwife, woman or professor. In other words, the research experience and all the reflection and struggle happened in part, because of who I am. And I don’t want to change that.  (Moch 2000a:7 emphasis added)

This extended opening quote neatly summarises many of the characteristics of practitioner research, particularly the idea that the research experience is directly affecting by the “being” of the researcher. For me, the most compelling feature of practitioner research is that it is born out of both personal experience and a need to know (McLeod 1999:8). This neatly sums up my thinking around the challenges which I face in my practice – I know how it is for me, but how is it for you? As Roberts records, personal experience can be the very starting point of a study whilst Reinharz takes this a step further to note that ‘feminist researchers frequently start with an issue that bothers them personally and then use everything they can get hold of to study it’ (1992:259).

The expectation that I could use my own skills and strengths as a practitioner as part of the ‘everything’ required to conduct the research rather than having to need to develop a whole new set, outside and beyond those needed, is a positive aspect of practitioner research. Some of the skills Corbin and Strauss highlight as a requirement for a grounded theory researcher include the drawing upon of past experience and theoretical knowledge in order to interpret what is seen in the data (Strauss & Corbin 1990:18). These soft skills - along with the reflexivity - which is a necessary part of my practice, combined with IT and administration skills, gave me enough confidence to undertake this research project.

Often, knowledge gained within the context of practice is perceived to be of greater value than any conducted by outsiders who cannot possibly know how it is to be in these situations and practitioner researchers are able to be actively involved in discovering and developing new forms of knowledge which may be unavailable to an outside researcher. This new knowledge, constructed for practitioners by practitioners, is aimed at directly benefitting practice. So, in my situation, I envisage my findings will have an impact upon the way in which I work with professionals, whether this is through a greater understanding of the dynamics of the relationship, through finding an avenue of change and transforming those dynamics, or simply through gaining a new awareness of myself as a practitioner.

If, however, the aim of practitioner research is that research should always be undertaken for a purpose, with a definite intent rather than for its own sake, (Fox et al. 2007:76), then successfully researching the working relationships between parents and professionals must culminate in knowledge which can be utilised in some form within the realm of practice. Although the desire to understand and interpret human behaviour can be a powerful motivator when seeking knowledge (Habermas 1971), practitioner research necessarily requires a commitment to advancing my own practice, rather than simply to satisfy my own curiosity. Accordingly, my research was designed to explore the dynamics of the relationships with the explicit aim of using the findings within a practice context, whether localised or for a wider audience. However, through undertaking the project and engaging with the methods, theories and debates surrounding practitioner research, my own learning, critical awareness and practice skills have undoubtedly been enhanced (Fox et al 2007:81-2). Practitioner research can therefore be seen as a method of professional development rather than simply an onerous task performed as an academic necessity.

My own position is as a member of the group of practitioners who participated in the research, therefore it was a not unreasonable expectation that the majority of the intended respondents would be known to me, either professionally, through collaborative involvement in parent carer projects, or socially. Rather than this being a hindrance to my work, I feel that it was, in fact, a benefit offering me a vantage point that was not available to those outside of the group. There was no need to artificially insert a new group member in order to collect the data (Fielding 1993:158) and this ‘lived experience’ offered the opportunity to co-construct a reality with the respondents in such a way as to make me an equal resource in the research, for us to ‘make meaning’ together. (Darlington & Scott 2002:49) Oakley terms this ‘interactive research’ (Oakley 1981:45) although as Wainwright clearly notes, managing my relationship with the respondents was an important aspect of the study (Wainwright 1997:9). Steps were taken to ensure that any emancipatory effect of research was not only for me, at the expense of my colleague parent carers (Mockler 2007:89) through the ongoing disciplines of reflection, respondent feedback and the conscious intent to do no harm, expressed in respect, beneficence and justice (Miner-Rubino & Jayaratne 2007:315). The concrete manifestation of these principles lay in the personal invitation to participate, detailed informed consent and availability of materials, and time, where needed, to reflect upon the experience.

Practitioner research and grounded theory

Grounded theory is an ideal methodology for practitioner research in its explicit use of theoretical sensitivity as a tool in theory building. This sensitivity comes directly from the researcher position and refers to the ways in which practice experience and knowledge are used as resources to heighten the awareness of the subtleties and meanings of the data collected (Strauss & Corbin 1990:41) in order to separate that which is pertinent to the particular area under scrutiny. In addition, the recognition that the theory generated from the study is the result of one particular construction which unequivocally reflects my position as a practitioner researcher (Corbin & Strauss 2008:ix) brings freedom from any objective search for one categorical truth about the data. Finally, if the chosen methodology should match some of the personality, character and skills of the researcher in order that a good fit between the two should  ensue (ibid:11), then for my practice, grounded theory in which meaning is collaboratively constructed with fellow practitioners through simultaneous data collection and analysis is the ideal fit.

Data Collection and Analysis

All is data (Glaser 1998:8)

Data collection

The initial data collection method chosen was semi-structured interviews, which fit well with the research paradigm and methodology through a reflexive, joint authored creation of knowledge (Gordon 1998 cited in Wimpenny & Gass 2000:1487) through which meaning can be constructed. Grounded theory interviews ‘seek to follow the major concerns or point of view’ of the participants (ibid. 1487) and rely upon the skill of the researcher to not ‘lead the participant nor interrupt, thereby cutting off a stream of potentially important data’ (Morse 2007:230). The research plan was that subsequent interviews would focus on theory development, requiring perhaps different questions as I attempted to refine the constructs which were emerging through the analysis of the previous interview data.

Alongside this, in accord with the paradigm being employed to frame the research, I sought always to take an openly collaborative approach in which I was happy to respond to participants’ questions about my experience and about me as a person (Oakley 1981). The interviews became real two way conversations through which experiences were shared, compared and discussed, so that some depth of meaning could be elicited together. In this way, I hoped to avoid any sense of exploitation for the interviewee as I wanted them to leave with a real feeling that together we have explored some of the issues that surround our working relationships. This reflects a feminist approach to interviewing which relies very much upon the ‘formulation of a relationship between interviewer and interviewee as an important element in achieving the quality of the information required’ (Rapoport & Rapoport 1976:31 cited in Oakley 1981:44). This relationship also enabled an immediacy to be captured within the data which also allowed any confusions or misunderstandings to be checked at the time of the interview. There are numerous instances recorded in the transcripts where the interviewee corrects my assumptions, clearly demonstrating that the interviews were definitely not simply an exercise in answering questions but truly contained that element of meaning construction that I had hoped for.

For example, in one interview, I concluded that the professionals could somehow be construing this parent as receiving their ‘comeuppance’ in some small way and suggested as such;

Researcher: So was it a case of “Well, so now you know what it’s like madam”?

Parent 2:  No, no, not at all. I got a lot of support.


The parent then went on to outline a brief theory of how personal experience can change professional behaviour, which was not a direction I had thought of taking. This interview met the expectations of grounded theory as the participant gave their account of their experience (Starks & Brown Trinidad 2007:1375). I am aware that these interviews only produced data around what people say and think as opposed to what they actually do (Darlington & Scott 2002:51), but as I was primarily interested in how parent carers experienced their working relationships, which necessarily uses thoughts and feelings to construct meaning, actions were of less importance to me in this piece of research.

One criticism linked to this, may be surrounding the accuracy and validity of the participant responses and how I could be certain that what they were saying was true rather than simply being influenced by my presence and the desire to give me the information I wanted. However, rather than being sidetracked into a whole lot of ‘modifications of the situational factors’ designed to reduce the “dreaded” interviewer effect (Hyman et al. 1954:94), I decided to follow Glaser & Strauss and take the view that,

[E]ven if some of the evidence is not entirely accurate this will not be too troublesome, for in generating theory it is not the facts upon which we stand but the conceptual category... that was generated from it... (1967:23)

This “unscientific” stance freed me from any concerns regarding objectivity and truth and allowed me to listen to the participants telling their own story, in their own voice, from their own perspective, and for them to have their experiences believed and accepted as legitimate sources of reality.    This fits with my rejection of a positivist search for a truth “out there” and allowed me to explore the subjective worlds we share as parent carers working together as professionals.      

However, this reliance upon subjective truth should never detract from the trustworthiness of both the research and the record of that (Olesen 2007:429), and one way of ensuring this is retained is through the support of an audit trail (Bowen 2009).  An audit trail should ‘document chronologically and systematically what [the researcher] did, how they did it, and how they arrived at their interpretations’ (p. 305) and should encompass trustworthiness, credibility, transferability, dependability and confirmability. Any charge that researchers ‘choose evidence selectively, clean  up subjects’ statements, unconsciously adopt value – laden metaphors [and] assume omniscience’ (Charmaz 2003:269)  can be refuted through the use of an audit trail. The, simplified, audit trail for this study takes the form of research notes and log book, interview transcripts and coding tables and the written data produced through the later workshop. This material is only available to the examiners and will not be published. This lines up with Charmaz’ observation that word limitations in books and journals (and here academic dissertations) restrict space for full accounts of research methods (Charmaz  cited in Olesen 2007:424)  and also serves to protect participant anonymity, whilst at the same time clearly evidences the steps taken throughout the research to develop the emerging theory.

Analytic memo writing was used throughout the study, with dated records of feelings, impressions and thoughts which aimed in some way to gain both the analytic distance needed to move away from simple description towards conceptualisation (Lempert 2007:249) and to chart the journey through data collection and analysis so that it became more than an internal conversation in which significant processes may have been lost. As Johnson (2001) notes, this act of memo writing is more than the type of reflection practiced in the shower (p.53) as it shifts onto a technical level where the very act of doing – in this case writing – becomes analogous with thinking. Cohen links thinking and writing with the possibility that the only time we think is when we write (1977 cited in Johnson 2001:57) and I certainly found memo writing to be a useful analytic tool in the study.

One early memo (dated 1/11) concerns the uncertainty contained in beginning a study as a novice researcher and the responsibility to the participants’ material, to ‘do my best’ with it (Roberts 2007:27). It describes the decision to firstly “have a go” at coding an account of my own experiences before attempting to even undertake an interview!  This memo serves in some way to begin to justify the inclusion of my own account within the data collection, as an initial endeavour to ‘feel my own way through and into the research’ (Corbin & Strauss 2008:x). This also served as a mechanism to allow me to find my own voice within the research process in a deliberate effort to move away from an objective, academic style of reporting in which silent authorship comes to mark mature scholarship (Charmaz & Mitchell 1996:286).

Data collection (1): Autoethnography

As noted above, my foray into autoethnography resulted more from a need to situate myself as a participant researcher and find my voice than any commitment to the practice per se. In addition there were more practical reasons for beginning the coding process with my own account and this was due to a delay in gaining ethical approval from the University. What I discovered through this recording of my own story, was that a personal narrative can be used as ‘a method to avoid the objectification of more scientific methods of research by erasing the boundaries between the self of the researcher and the researched’ (Bocher & Ellis 2002).   In addition, then, to our shared identities as parent carer practitioners, I felt that I had undergone a similar “interview” experience as the participants in the study.

However, unlike those participating in the research, I did not need to frame my account for a particular audience, nor was I truly “telling” my story to anyone, it was simply a record I needed to practise coding upon. If legitimate autoethnography requires the writing of a reflexive personal narrative (Denzin & Lincoln 2005:645), then my bald statement of facts falls far short of anything deserving such a title! It is fair to say at this point that I was unaware of how different my story would seem in comparison to the actual interviews and so in complete naivety and innocence I began the coding process.

The majority of the memos composed during this period of waiting to conduct the interviews are concerned with the actual process of coding data rather than any response to the data or to the concepts that were beginning to form. The greatest difficulty was not just to describe the data but to find relationships within that data which necessarily required some interpretation (Strauss & Corbin 1990:29). The second hurdle was to use theoretical sensitivity whilst at the same time not forcing the data into preconceived codes, chosen solely because of my familiarity with my own story. Grounded theory aims to explain phenomena (Holton 2007:272) rather than to attribute meaning to that phenomena (ibid. p.268), a subtle but important difference that can be difficult for the inexpert researcher to initially achieve.  Memos detail the basic errors that were being made during this first coding cycle:

30/11 Mistake of attempting to code the whole account in detail rather than just the passage particularly dealing with the professional relationships. End up with too much information and it takes too much time.

30/11 Need to consider the meanings of the terms being used and the codes rather than just them as descriptors of the data – ie what does “knowledge” mean here? Who owns/controls it?

Fortunately, through the continual return to the literature during this preliminary coding cycle, (Saldaña, 2009; Corbin & Strauss 2008;Charmaz 2006), these errors were soon identified and were not carried over into the next phase of data collection – the interview phase.

Data collection (2) – Individual interviews

In accordance with the “rules” of grounded theory (Hood 2007), a pool of possible interview candidates were identified through personal invitation to participate and an email “mailshot”. This purposeful sampling  sought out individuals who had experience of the phenomena to be studied and was therefore more detailed than simple convenience sampling (Morse 2007:38) but the decision as to whether to contact people for an interview at that point was based on the concepts arising from the previous data analysis. This  theoretical sampling has its foundations in Strauss & Corbin’s interpretation of Glaser & Strauss original method and not only ‘allows sampling  on the basis of concepts emerging’ as above, but also enables further verification of hypotheses while they are being developed’ (1990:46). 

For this study then, the first parent carer working in a professional role to be interviewed needed to be someone who had had a dissimilar experience to my own. I was employed in a completely different field until the birth of my child so deliberately searched for an individual who had remained broadly within their same field in order to compare and contrast the findings (Morse 2007:240). This jump straight from the coding cycle into theoretical sampling without ploughing through a serious number of introductory interviews may seem precocious but it was needed for two reasons. Firstly, as discussed in the population sample and definitions the number of available participants was very small and secondly, the time limitations did not allow for a large number of individual interviews. It is here that grounded theory as a method really shines, as the consensus is that there is now no single prescriptive  formula that needs to be rigidly followed, rather grounded theory has become a more general qualitative method of conducting research (Charmaz 2009:127) so I could move from one phase into another with absolute freedom. Hood (2007) disputes this view and argues strongly that only a purist form of the method should be awarded the title ‘Grounded Theory’ - complete with capitalization - lesser methods, particularly those which confuse purposeful and theoretical sampling (as may well be the case here) should go by the title of Generic Inductive Qualitative Model. Hers appears to be a lone voice and as many of Glaser and Strauss’ original canons have since been overturned in favour of wider interpretations I am confident in my own employment of the method and its dictates here.

Interviews as a primary method of data collection are used throughout qualitative research (Starks & Brown Trinidad 2007:1375) as each one can produce rich, dense data (Hycner 1985), meaning a study can be completed if necessary with fewer participants– which is useful in an area where there is only a small pool of possible candidates for inclusion to begin with. Corbin & Strauss (2008)  stress that it is the skill of the interviewer that is important rather than the number of interviews undertaken and Morse (2007) confirms this with the adage that ‘more bad data does not make good data’ (p.231) going on to comment that ‘it is necessary to locate excellent participants to obtain excellent data’. Finally, Hyman et al (1954) add to this with the reminder that thorough and accurate recording is needed (p.89) to consolidate all the above elements and make each interview a positive, useful source of data.

Semi-structured  interviews were used, these being more successful in obtaining dense data than those which are rigidly composed, but less useful than those which are completely unstructured  (Corbin & Morse 2003). However, I felt that I needed a certain amount of structure in order to guide me through the process of conducting fairly in depth interviews with people that I already knew. I also felt that it would assist in creating a sense of equity amongst participants who knew each other and were likely to meet up at various points in the year if roughly the same questions were used to open each area of inquiry. In addition, I hoped that the use of the same questions which had guided my own account would further the sense of a non-hierarchical structure to the study where all involved are equal participants (Campbell & Bunting 1991).  All interviews were tape recorded and later transcribed using voice recognition software and participants were offered a copy of their transcript to check, only one accepted. In accordance with the ethos of the study, none of the transcripts will be published but will be available to the examiners in order that participant identity is protected.

The four broad areas discussed in each interview were:

1.      Motivations for seeking employment in the field of disability

2.      The experience of working in both formal and informal settings with service providers who may be working with the participant and their family

3.      Whether participants would remain in their same field of employment if disability no longer affected their family

4.      Work/leisure boundaries with their family

Within these areas, the interview was generally able to follow the direction that the participant wished to take.  However, the mere existence of these areas of interest suggested that a ‘conceptual map of the phenomenon’ already existed within my own preliminary thinking and that this pre-existent map may then have served to ‘limit the interview and reduce the potential depth’ (Wimpenny & Gass 2000:1490). In defence of this, the project was designed to look at one particular aspect of parent carer experience and without this frame there was always the risk that the data produced would be of poor quality for the research purposes. Additionally, grounded theory interviews are themselves aimed at beginning broadly but become more specific as the theoretical concepts emerge and need developing (ibid. 1490).  Here, the specificity simply began a little earlier.

It needed a lot of care and effort on my part to ensure that the interview did not descend into a type of interrogation and remained an interactive conversation, in line with both the methodology of the study where direct questions should never be asked (Glaser 1992:25) and to preserve the participant’s freedom to control the flow of information. The major source of difficulty lay in that my skills as a practitioner were more in conducting the type of interviews in which the salient facts need to be identified precisely and clearly in order for a specific task to be completed. This “free form” style was a new development for me, but could be viewed in the positive light of enhancing my development as both researcher and practitioner (Fox et al 2007:81-2). However, as it was an awareness of my own ability and preferred style that had caused me to choose grounded theory over phenomenology (see methodology & methods), this enabled me to be prepared and to work hard to ensure a balance of interviewer/interviewee time (Kvale 1996) was deliberately accorded.

A post-interview comment sheet was used to capture an immediate response (Chiovitti & Piran 2003), particularly to note elements of surprise or excitement (Miles & Huberman 1984). As Morse et al (2002) outline, identifying features which cause surprise can enable the identification of one’s own personal constructions surrounding the phenomenon under study.

The transcription of the interviews was a tiresome, but essential research task.

Memo 23/11 It is so difficult and time-consuming to transcribe data. I am not an accomplished audio typist and find the process reduced to frustrated efforts to capture what at the time seemed such a rich source of data but now is dry and dusty words on a screen.

The use of voice recognition software removed much of this frustration although the same amount of time was then taken. It did however have the benefit of bringing me back into close contact with the data, as transcription by the researcher, as opposed to by a member of the admin team, enables a re-engagement with the data and a chance to revisit some of the ideas (Morse et al 2009:192) and to begin some preliminary sorting as an emphasis on particular ideas and themes started to reveal itself. 

The transcript was then coded and the literature searched for insight on any concepts and themes that were emerging before the next interview took place. Each subsequent interview was aimed at filling the gaps or confirming some thoughts from the data analysis that had occurred this far. This was not as easy as it may at first seem as it is fairly challenging to identify participants who will have the right information for that precise point in the study, especially when there are only a few possible candidates. Later interviews included a number of targeted questions in order to verify the emerging theory (Morse 2007:240) , although at this point is was much less a theory and more an ambiguous  mish mash of thoughts and ideas which very much needed sitting with and reflecting on in order to find the direction in which to take the project (Morse 2009:21).

Data collection (3) – participant workshop

The next stage of data collection was initially envisaged as a focus group which I saw as adding to the research by enabling the details of the working relationships, which may have been forgotten or overlooked in the interviews, to be expressed through the sharing or comparing of knowledge (Leavy 2007:174). One parent carer’s experience, or the way in which they responded to it, may resonate with others who, until that point, did not have that knowledge in an accessible form. In addition, the oppressive character of some daily experiences can often be revealed within a group setting as individuals, who have become hardened to unequal power dynamics through repeated episodes, or who have perhaps repressed the experiences in order to continue to function successfully at work (ibid. p.182), are enabled to revisit these. Focus groups, therefore, can allow the researcher deeper access to data that would otherwise be unavailable. In addition, focus groups are designed to produce the same type of rich data as an in depth interview (Basch 1987:434) and therefore are a good match with the earlier phase of the research – the data would be of a similar type and in a similar format and would use the same coding formulas.  

However, as the individual interviews proceeded, I found I was drawn more to a collaborative workshop type activity in which, together, parent carers and I could consider the findings and the outlines of the theory in order to finalise the findings and neatly tie up any loose ends. I also found that my rationale for proposing a focus group – motivated by the need to ensure that participants felt safe and able to share thoughts and feelings from a difficult and marginalised position (Leavy 2007:173) – was simply not needed. Throughout the interviews, and whenever I talked to likely participants, there was a sense of them wanting to share their experiences and being more than able and articulate enough to do so. A final factor in my rejection of a focus group model lay in a lack of confidence in my own ability to successfully run, record and enjoy such a group. Instead, in keeping with practitioner research, I chose to use my professional knowledge and run a workshop.

Morse (2007) terms this type of data collection activity ‘theoretical group interviews’ as they are designed with the specific purpose of finishing the puzzle, facilitating the analysis and adding information (p.241).  I prepared a number of activities that were intended to be completed in small groups, with the whole group coming together to agree the response to be recorded (Appendix 3). This design was chosen deliberately to protect participant identity by obscuring, or removing, any distinctive or dominant voices, although it was agreed that any radically conflicting views would be recorded. The workshop was recorded but not transcribed as this was simply an aide memoir if needed – the data was captured on the completed worksheets.

Seven parent carers attended the workshop and cakes were baked and shared by one participant, making the event a very positive one from the outset. However the group did not immediately grasp the language or concepts that I was presenting and some time was taken up exploring and explaining these. This is probably due to my having lived with the data and the research for a long period of time and thus having placed implicit rather than explicit ideas in my material.  This demonstrated that practitioner researchers do not just need theoretical sensitivity, but also the ability to translate the language of concepts and categories of the data into clear statements for participants to work with. Once again, the success of the data collection is dependent upon the skill of the researcher (Strauss & Corbin 1990:18). Karp (1996) summarises this problem by noting that ‘ issues, worked on nearly daily for [a period of time] become so familiar that bringing them into clear focus seems impossible’. Fortunately, the need for explanation and illumination worked as a vehicle for the workshop to operate as a real experience of ‘dynamic interaction between the researcher and the researched’ (Hesse-Biber 2007:320).  The participants, as expected, were vocal and eager to share their experiences and the energy and balance differed from the individual interviews as the participants interacted with one another and with me as we considered their responses to the activities. Early on in the proceedings, the challenge that I perhaps should be a neutral voice without an opinion was addressed through further reference to practitioner research and my hope that I could place myself right in the centre of the study along with the participants (Corbin & Strauss 2008:4) and I feel this was achieved in the workshop as we genuinely constructed knowledge together (ibid. p10).

Early preparation for the (then) focus group included considering the possibilities of conscientization (Friere 1998) as the research process had the possibility of revealing the oppressive character of some of the daily interactions of the working relationships under scrutiny. The practical outworking of this was expected to take the form of information sources representing employer/employee relationships such as ACAS being made available to participants at the end of the workshop. Instead, as the analysis took shape ready for the session, the central concepts emerging were around disability and choice rather than equality and status in employment. Because of the need to ‘respect the data’ even if I wasn’t finding quite what I had expected (Noerager Stern 2009:58), I needed to offer resources that dealt with these concepts and which enabled participants to spend time after the workshop reflecting upon their experiences. An article by Vic Finklestein (1975) and another by Smoller (1986) were identified as representing a balanced view of disability models and construction of knowledge and these were given along with references to some of the literature referred to. (Appendix 4)

Data collection (4) – email responses

Finally, in order to reach as many of the limited number of parent carers that were eligible to be included in the study, an email ‘mailshot’ was used in which the activities from the workshop could be completed individually and returned electronically. This was sent to eight possible candidates but unfortunately only two were returned.  The return rate of 25% looks impressive but illustrates the deceptive nature of statistics. However, this last step was needed in order that every possible avenue to increase participation had been explored and that the theory building could use as wide a range of data as was available at that point in time.

Data analysis

One of the key differences between grounded theory and other qualitative research methods is that data collection and analysis are performed in a continuous cycle where one informs the other, each stage having implications for the direction of the next. As the founders of grounded theory describe it:

...the analyst jointly collects, codes and analyzes his data and decides what data to collect next and where to find them in order to develop his theory as it emerges. (Glaser & Strauss 1967:45)

 For ease of reading, although data analysis and collection in the study occurred simultaneously rather than in discrete stages, they are presented separately here. I am aware of the criticism that this narrative presentation ‘slurs the methodology’ (Suddaby 2006:637) but feel that any other attempt at presentation may simply confuse both me and the reader.

Coding the collected data is the ‘core process’ (Holton 2007:264) of data analysis in grounded theory methods and although it is used in many other types of research, for grounded theorists it is only through coding that concepts can be abstracted and the categories  that will eventually form the theory can begin to emerge directly from the data. Linked to this central process is the writing of memos as a record of the ongoing products of analysis (Corbin & Strauss 2008:117) so that an ‘ongoing, developmental dialogue ‘(Shatzman & Strauss 1973:9) with the data can be tracked throughout the project. Accordingly, I followed these foundational procedures in the hope that using the correct processes would result in the correct theory! 

Although I found I was excited about the prospect of beginning to code my data, as a novice researcher, I had no experience of exactly how to do this and my excitement was tempered with fear generated from statements such as ‘the excellence of the research rests in large part on the excellence of the coding’ (Strauss 1987:27) in which the success of the study depended entirely upon my abilities in applying a process I know very little about.  In contrast, memo writing was a technique familiar to me through the ongoing use of reflection throughout my academic studies and practice and so could be used to enhance the practitioner researcher element of the analytic process.

Memos from this early stage of coding clearly illustrate my grappling with the process and procedures of coding rather than addressing any content of the data. The main theme appears to be the need to refrain from simply describing the data alongside an attempt to keep the purpose of coding uppermost in my mind.

1/11 Need to not just code – as this will simply describe (Corbin & Strauss 1990:29) but need to find relationships between the data to build theory with – requires interpretation.

One of the eventual goals of GT is to formulate categories from, codes – so not to lose sight of the reasons for coding

Theoretical sensitivity

Strongly linked with the technique of skilled, non descriptive and purposeful coding, as the vehicle through which such success can be achieved, is another of grounded theory’s foundations – theoretical sensitivity. This key attribute describes the manner by which the researcher’s background and professional knowledge can enable the coding process through a familiarity with the broad areas of debate, the narrower local context and the reflexivity of practitioner research (Dey 2007:168ff). This suggests that codes are not arrived at through a pre-defined hypothesis, but nor can they be expected to emerge “fully formed” from the raw data if one would only look hard enough at it. Instead, the researcher is expected to use ‘reflexive self awareness to gain access to the underlying or implicit meanings of the study’ (McLeod 1999:8).This realisation gave enough confidence in my own practice ability to facilitate the initial attempts at coding. As previously mentioned, a delay in ethical agreement resulted in a delay in data collection so my coding began with the written account of my experiences.

Open coding

The influence of research that prescribes definite procedures in order for analysis to qualify as ‘grounded theory’ (Hood 2007; Strauss & Corbin 1990; Glaser & Strauss 1967) can be clearly seen in this first ‘stab’ at coding (Table 1 below) and significant time was spent on getting the layout of the page correct as per the literature:

Information Source 1 (I.1) Page layout as Liamputtong & Ezzy (2005:270-3) cited in Saldana (2009:17)

Raw Data

Preliminary Codes

Final Code

I experienced the difficulties of the ‘system’ – the inequalities around knowledge, provision and resources and the need to ‘fight’ for everything – very little was freely offered.

Personal experience

Difficulties of System


Knowledge as resource



The most powerful thing was information – about rights; about services; education; benefits etc. I became very aware and picked up information wherever possible, at conferences, exhibitions etc that I attended. I was always willing to learn more

Information as power



Awareness raising

Sources of information


Desire for knowledge


Table 1 – Excerpt from interview(1)

Memos written during the coding remonstrate about my lack of skills with publishing layouts as I grappled with keeping the text static whilst adding codes to the sides. A further period spent with the literature centring on techniques and procedures resulted in the addition of a need for process codes which sought to isolate both actions and consequences of those actions through the exclusive use of gerunds (“-ing” words) (Saldaña 2009:77). The process codes added to the passage (Table 1) - in pencil in the margins as this was much more efficient than attempting to reformat the data - were fighting for rights/services, information gathering, conscientizing.  The accompanying memo expands on these:

2/11 Fighting for rights/services –a necessary part of everyday life with a disabled child in order to receive appropriate services (Beresford et al 1996). Fighting → getting needs met appropriately. In order to do this, knowledge of both rights and available resources is required, so information is key to the ability to fight, or rather, fighting is the consequence of information gathering.

Line by line analysis of the data proved to be a challenging task as I preferred to take a more immediate, overall view of each section of the transcript. However, as this initial, holistic stance may disguise or obscure important coding opportunities a more phenomenological approach was taken where initial impressions were “bracketed off” so that the data could speak for itself rather than having any form imposed upon it (Wimpenny & Gass 2000:1487). Unfortunately, this positivist expectation that the “truth” would then arise from the page of the transcript (ibid.) served to prohibit any notion of theoretical sensitivity from operating and the approach was abandoned. What was found to be supportive was the notion that ‘trusting one’s intuitive sense of the conceptualization process’ (Holton 2007:266) was enough to enable codes and categories to begin to emerge through the coding process.

It was important to ensure that coding was not simply producing labels with accompanying raw data piled up under those labels and that reflection was actually taking place (Corbin & Strauss 2008:163). It is in this reflection that the conceptual links can begin to be made and when these are recorded through systematic memoing, the resulting audit trail may address one of the identified problems within grounded theory – of rigour in the analysis (Wasserman, Clair and Wilson 2009:355ff). In addition, the employment of theoretical knowledge meant that the codes were not simply a ‘plethora of incoherent observations and descriptions’ (Kelle 2007:203) nor were they merely patterns in the transcripts (Dey 2007:177) but they were concepts actually generated from the data itself. It is important here to refute any accusation of suggesting the codes were objectively available within the data to anyone who was looking. It must always be remembered that a grounded theory depends upon the location and position of the researcher who makes particular choices about the data dependent upon its purposes and through these choices, shapes the research (Corbin 2009:51).


In vivo coding

The initial coding process continued with subsequent transcribed interviews and at one point ‘in vivo’ coding was used in an effort to retain the participants’ voices in the analysis as I felt this had been lost through my repeated exposure to both the literature and the data as I now “knew what I was on about”. In vivo coding uses the terms and words used by the participants themselves (Strauss 1987:33) with the aim of bracketing off the terminology found in academic texts and professional practices (Stringer 1999:91). It is a method of honouring and prioritising (Saldaña 2009:74) the voices of the researched and as such resonated with the feminist approach of this study (King 1994:20).

The codes that were generated using this process looked very different from those previously generated For example:

Excerpt from interview

Preliminary code

In vivo code

Yes. They were very informal with me. When they came into [work] they would be very informal and would start talking about [my child] while I was at work.

I didn’t like it as that’s private. And I’m quite a private person, I found that hard.

Information about you


One of us


Just very informal with me

A private person

I didn’t like it

I found it hard

Table 2 - Excerpt from interview(1)

In vivo coding is useful to identify what is significant to the participant and helps to preserve their ‘meanings of their views and actions’ (Charmaz 2006:55). In the extract above, the participant clearly declares an identity as a private person who did not like the informality being encountered. In contrast, the initial codes failed to link boundaries and exposure with any notion of privacy nor were they capturing the emotions that the participant had expressed.  A memo records:

30/11 In vivo coding: passages move from language of choice and preference towards compulsion and need, the language of receiving – “give me”, “I got”.

The memo also notes how much more flowing and intuitive in vivo coding was which eased the process of coding long interview transcripts. Unfortunately, even with these positive attributes which could surely only enhance the analytic process, in vivo coding does not protect the anonymity of the participants sufficiently for me to continue using it. The rationale of the project has always been for identity to be protected through every stage which must include the analysis as well as the write up and dissemination. Taking the extract above as an example, considerable time was spent pin pointing a section of the transcript that was fairly mundane and common to each interview so that any distinguishing language or phraseology could be avoided.  A different approach was needed in order to both safeguard anonymity and to bring a reality check to the codes being generated so a peer group coding session was planned as part of the ongoing academic supervision of the project.

 Peer coding exercise

With the specific permission of the interviewee, one page of the transcript was given to a group of fellow students and the senior lecturer who was supervising the research module. The aim was to individually code the page and then bring the findings together so that any extreme bias I may be bringing to the coding could be revealed and then accounted for. It was also a confidence building activity as I, in common with most novice grounded theory researchers, had found it difficult to move away from the specifics of the data to a more abstract concept (Weiner 2007:301). Interestingly, this process made it evident how the page layout that so carefully adhered to a research ideal (see Liamputtong & Ezzy 2005 cited in Saldaña 2009:17 and Table 1) was influencing the coding. The tabular format had the effect of breaking up participant’s words so they would fit into the space allowed as opposed to reflecting natural pauses or separation of ideas. Hence codes were being artificially pushed into places where perhaps none should have been. Whilst later stages of coding endeavour to explicitly fragment the data, at this early stage a more holistic view was being sought. This difficulty aside, it was a relief to find that on the whole, the codes selected through this coding exercise tended to confirm my own choices, demonstrating perhaps, the common social constructions of research students!


Constant comparison

Glaser & Strauss (1967) introduced the term ‘constant comparison’ (Bryant & Charmaz 2007:43) to describe the process by which the ongoing data analysis (and collection) is designed for the ‘creative generation of theory’ (p.103) through comparing incident with incident. The particular way in which this procedure epitomises grounded theory is in the way that the data is constantly in flux, as new concepts are generated, past data is scrutinised to find incidents to compare to this, and new data is sought for this specific comparisons. This could only work in a model where analysis begins as soon as the first data is collected and where, delightfully, if deviant cases occur, rather than negate a long held hypothesis, they are simply another incident to be coded and classified – there is no cause for alarm (Covan 2007: 63). For the purposes of comparison, the data is broken down into incidents, actions or processes (Glaser & Strauss 1967:108) which will then be put back together in new ways as the emerging theory demands. The holistic overview is no longer needed but remains a useful initial tool in order that the researcher can recall from memory some of the details rather than need to rely on an actual written note of each incident (ibid. 106).

In this study, one of the earliest codes to be generated was that of “experience”. Using the constant comparative method an example follows showing how the notion of the meaning of experience was constructed and explored.

Experience was initially categorised as:       

  • Shared identity
  • Difference
  • Currency
  • Unavailable to professionals
  • Closed group
  • Belonging
  • Insider knowledge


This concept was then further abstracted as follows:

·         Having “had” the experience of parenting a disabled child → to go through; to know

·         Previous employment experience with disabled children → familiarity, knowledge

·         Experience as a parent → to know, familiarity, understanding

  • Own personal experience →to live through, to know , familiarity
  • Levels/amount of experience →exposure, knowledge, understanding
  • Professional experience →practice, familiarity, contact
  • Experience as understanding others → knowledge , understanding, to feel
  • Role of experience →familiarity, knowledge, to encounter

Therefore, if experience = knowledge, and information = knowledge, then to live it is to really know. Further comparisons resulted in the generation of a category in which “experience” is to know about it, to know how it feels and to know what it means. Comparisons continued throughout the remainder of the analytic cycle until the final categories were produced – see Research Findings.


So, for this first cycle of coding, open coding with accompanying memos, informed by theoretical sensitivity of data collected via theoretical sampling with constant comparison, means that much of the criteria for a grounded theory study had been achieved. 

Reflection on the coding process

Fairly early on in the data collection cycle, the point of theoretical saturation - where no new information was arising from the data - appeared to be reached. Over 300 initial codes had been identified yet by the fifth interview no fresh information was coming to light. That this saturation resembled more Stern’s (2007) account of being ‘bored’ (p117) rather than Glaser & Strauss’ (1967) experience of reaching saturation whereby gaps in the emerging theory are almost, if not completely filled (p61) was something of a disappointment. Any romantic ideas that may be harboured about a theory emerging fully completed from the data (Stern 2009:59) were quashed as the long hard slog of construction and interpretation beckoned instead. I needed to put myself, as a practitioner researcher, right at the heart of the study (Corbin & Strauss 2008:viii)  which entailed more than simply acknowledging a shared membership with the respondents taking part, and instead required some direct analytic work. What was needed now was a significant amount of time spent working directly with the data collected in these initial interviews in an attempt to tease out some of the less obvious themes that were being thrown up. This thematic analysis (Auerbach & Silverstein 2003) aimed to organise the data into larger, more useful blocks as opposed to the fragments that the initial coding had produced and was undertaken in the certain knowledge that simply adding new interview transcripts was not the answer. I needed to look again at the data I had.


This phase of the analysis generated more questions than answers and the research took a more reflective turn as I grappled with the difficulties that a shared identity and discourse had effected on the data collected. This period of abstract conceptualization, which, according to the ‘touch test’ (Saldaña 2009:187), meant that categories did not refer to anything of physical substance, was anticipated to be one of the most enjoyable periods of the research.  Rather than equating time spent thinking about the data as self indulgent practice with limited rewards, I was encouraged to grasp the opportunity to pause and reflect upon which aspects of the data were puzzling me; what stories were being told; where were the plots and the sub-plots, and how valuable were the answers to these questions, both to me as a practitioner researcher and to the research project itself.

Unfortunately, after a prolonged period of reflection and consideration of the data and the codes generated in the first cycle, I found myself going around in circles. No further information was emerging from my interaction with the data and my close proximity to the field and familiarity with the interview transcripts now were such that it became difficult to see new possibilities (Alvesson & Sköldberg 2000:17). I turned back to the literature in search of my ‘eureka of new, powerful explanations ‘(Leigh Star 2007:77). This approach contrasted sharply with that of grounded theory’s originators who direct researchers to only go back to the literature to determine if a category is there (Strauss & Corbin 1990:50).

Coding for social justice

From the outset of the research project, issues of equality and hierarchy and the rights to knowledge and information had appeared. A concern for these topics had remained a fixed point throughout the duration of my postgraduate studies and was no doubt coloured by my own position as a member of the respondent group and the theoretical sensitivity I brought to the project as a practitioner working with the effects of equality and rights on a daily basis. A re-reading of Charmaz’ (2005) Grounded Theory in the 21st Century, Applications for Advancing Social Justice Studies reminded me of the rationale behind my initial interest in the experience of parent carers and professional relationships in the workplace environment. Her expectation that any researcher who was interested in social justice would ‘note points of struggle and conflict and ... look for how participants defined and acted in such moments’ (p517) led me back to the data to do exactly that. However, to go back through all the transcripts to identify such moments in order to code them accordingly, felt like an overwhelming task for a novice researcher who was also trying to juggle paid employment and family life as well as study, particularly when so many hours of coding had already been completed. Fortunately, and excitingly, it appeared from the very start to throw up some new and very interesting concepts which were an encouragement to persevere.  The reminder from Glaser & Strauss (1967) that there is no need to code every incident for the new categories as this would simply add bulk to the codes and nothing to the theory (p.111) meant that I was able quickly to identify the points of conflict I was interested in. This resulted in around 20-30 incidents for each transcript which were then analysed for both action and definition – process codes (Table 3 below). A decision was also made to summarise each incident so that with identifying markers removed, the data could be widely used if needed. Once again, the IT dimension of research reared its head and four of the five transcripts were analysed by hand in pencil as this again was a more time efficient manner of completing the task.

Points of struggle and conflict

Table 3 – Excerpt from coding for social justice (1)

Area of conflict



Professional and personal responsibilities and need to look after own health

Left profession

Used experience to help others to ‘get the best out of the system’

No one else will look after me  -personal responsibility


The experience was valuable and could be used

Balancing request from profs. with own responsibilities at home and work

Attempts to find solutions

I am expected to sort this out personal responsibility

The child, rather than the system, is the problem

For the analysis in the table above, “definition” was an attempt to identify the ‘ongoing action/interaction/emotion taken in response to situations or problems’ (Corbin & Strauss 2008:96) and is a continued part of process coding.


It was interesting to see how once the data had been fractured in this way it ceased to be simply “someone’s story” and became the purposeful data needed to build the theory. Each piece of data could be numerically identified and traced back to the source if needed but in this form it enabled a distancing from the participants themselves so that their words could be scrutinised more closely. It is true that in transposing their voices a level of interpretation had certainly taken place, but as the research was framed within a paradigm of constructivism, ‘any theoretical rendering will offer an interpretive portrayal of the studied world, not an exact picture of it’  (Charmaz 2006:10) this interpretation was to be expected.

For this reason, the final stages of the data collection cycle included participants being asked to work directly with these interpretations to check for validity, legitimacy and fit.


Second cycle/axial coding

During this phase of the analysis, the fragmented data needed to be organised in ways which would attribute depth of meaning to the codes, and begin to build the theory by strategically reassembling the data (Saldaña 2009:159). This stage significantly reduces the number of codes through a process of delimitation (Glaser & Strauss  1967:109-110) in which properties of a categories are combined or dropped from the theory altogether through becoming redundant. The memos may also be coded and included in this stage of analysis, and final pieces of data may need to be collected. For this study, this took the form of the workshop and email activities mentioned in Data Collection.

The aforementioned lack of IT based publishing skills necessitated a very old fashioned method of data assembly in which the process coding tables and memos were photocopied and cut up into concepts which were then organised into major categories, again through comparison.  This method is obviously familiar to Stern who writes:

For my part, I always had the impression that we constructed grounded theory – we built it. Sorting memos by hand, we built piles of thoughts about data that became a grounded theory. (2009:60)

So it was then, that surrounded by piles of paper, months, weeks, days and hours of toil were reduced to the thirteen major categories which would, once the final connections were made and relationships identified, become my Grounded Theory.


Research Findings

Well, the theory certainly doesn’t rise up off the page as the term [emergence] implies, but after weeks or months of painstaking analysis, when you finally get it, it seems like a second coming!

(Stern 2009:59 emphasis added)

Whilst grounded theory methods are ideal for researching invisible and marginal populations about whom little is already written, (Punch 200:103) a lack of agreed guidelines for writing up a grounded theory (Corbin & Strauss 2008:280) mean that decisions regarding which data to include and how exactly to present the final theory are left to the individual researcher. For a novice, this can either be seen as another instance of methodological ambiguity or as the freedom to structure the writing to one’s own tastes and preferences. As a practitioner who finds that the greatest freedoms lie within defined structures, I have chosen to follow a similar outline to that found in many journal articles which present grounded theory research projects.

Core concepts

The initial data analysis produced over 300 preliminary codes which covered a wide range of issues, concerns and descriptions including: asking questions and asserting control, disability hierarchy and welcome - openness and acceptance. These two or three word phrases did not carry the depth of abstraction required for a grounded theory analysis which is itself ‘an act of conceptual abstraction’ (Holton 2007:272) and it was not until the second cycle of coding that categories and relationships began to emerge. At this point thirteen core concepts had been generated by constant comparison and inductive analysis of the data. This reduced number reflects the notion that fewer, more novel categories can give depth to the writing power of the final analysis (Charmaz 2006:161) through presenting memorable and thus more easily recalled concepts.

The core list comprised of:

·         Partnership

·         Value of experience

  • Information
  • Support
  • Personal responsibility
  • Control and choice
  • Identity
  • Stereotypes
  • Systemic barriers
  • Equality and status
  • Feelings
  • Boundaries


A brief glance at the list above reveals very little evidence of any novel ideas and categories, visibly demonstrating the difficulties novice researchers encounter when trying to move out of the specific to more abstract concepts (Weiner 2007:301) and this remained the case throughout the final analytic stages. A further three categories were added once the analytic memos (not including those which simply dealt with process) had been coded. These additional concepts were:

  • Difference
  • Contradictions
  • The professional ownership of care


Once the final stages of data collection and associated analysis had been completed, the core categories reduced further as the conceptual links and relationships subsumed some concepts into others whilst removing some information altogether.


Lived experience

The central category emerging from the research concerned the lived experience of the participants. This experience was variously described as being of higher value than theoretical knowledge, skills and qualifications; as being the ‘secret weapon’ in the parent carer’s arsenal; as being unavailable to outsiders and as a method by which parent carers of disabled children “triumph” over the system. One participant pointed towards the person specification for her role in which understanding the needs of parent carers of disabled children was an essential attribute. She argued that the only way that this could truly be achieved is by having had that personal experience oneself. Experience gained through employment was listed as being only a desirable attribute for the purposes of shortlisting.

One exchange regarding the choice to disclose parent carer identity in a situation where perhaps others in the room were not aware of it, revealed a view in which this identity was seen as a “trump card”. This card could be played at the participant’s discretion but its main use was to outstrip the professional opinion being given. The sense of outwitting others through secret inside knowledge characterised this exchange throughout which notions of “us” and “them”, enemy forces and the language of battle permeated. This section of the interview was summarised in the coding as (Table 4):

Area of conflict



Professional knowledge versus personal experience

Fostering a sense of superiority due to insider knowledge not being available to professionals

Lived experience is of higher value than qualifications. Qualifications can be learned/gained but not lived experience

Table 4 – Lived experience

Comparing this view with other data found that this secret knowledge was employed as protection, as a confidence booster, particularly for participants who did not have professional qualifications in the service field they were employed in. It enabled a genuine impression of equality, of having valuable information to offer and a unique viewpoint which could be used in decision making. For those participants who were appropriately qualified, lived experience acted as a reality check on their professional opinions and ultimately altered these causing them to act in ways which differed from their colleagues without this experience. One participant had found a balance through the “explicit wearing of hats” – a means by which she articulated some views as a parent carer and others as the holder of her particular position. Interestingly though, when wearing the parent carer “hat,” she plainly stated this to be representative of the opinions of a wider body of parents rather than speaking from just a personal position.


A memo records some of the conflicts I was having with the research findings:

03/02 Is it not expecting too much, double standards maybe, to expect to  be accepted as an equal and then in a deliberate effort to “win”  and make use of your identity as a member of the group, an identity which until then did not come into it? Is that subversion? Is it good or is it somehow devaluing and dishonest?

Should we, simply because of our lived experience expect to be of equal status? Should not the role rather than the person occupying it be the focus?

When exploring how the professionals involved may feel when a colleague unexpectedly attempts to influence opinions and decisions through disclosing a personal interest in a subject, the suggestions centred on the expected eye rolling and “not another bloody whinging parent” scenario, in which the only reason the job was given was to meet government expectations of working in partnership with parent carers. One participant described this situation as follows:

But I think that as parents we often feel that professionals dismiss us and dismiss our opinions. Consulting with us without thinking that we’ve really got anything to say, whereas they have a degree and have been to university and have been studying their subject for years and they know everything about everything...but they probably don’t know what it’s like to live year in and year out with that disability....

This reveals the paradox that then may arise when identity is disclosed in a deliberate, perhaps confrontational manner – that an opinion is subsequently dismissed simply because it comes from a parent carer standpoint.

The idea of a secret identity is further reinforced when the question of who the parent carers in employment in Cornwall actually are is asked. Unlike some of the many other identities held throughout a lifetime, that of parent carer is ultimately visible in some sense to other parent carers. This may be caused through the geography of the region or through the diligent work of the Parent Carer Council who seek out as many parent carers throughout the county as is possible in order to carry out consultations and service development plans, or through coincidental meetings at events designed for families with disabled children. One participant noted that parent carers just “get each other” – a comment perhaps on the solidarity that accompanies a minority position.

This shared identity was probed further through discussions surrounding parent carers working within the service field who do not disclose their identity to other parent carers but are later “found out”. The consensus of opinion towards any parent carer in this position was very gracious and understanding although the difficulties involved in concealing this were seen to make this possibility fairly unlikely. One participant had encountered such a situation and said that it made her understand why the person did the work they did and how their lived experience undoubtedly enhanced their practice, but at the same time commented on the need to be upfront and open about one’s identity. The fact that fellow practitioners were unaware that their colleague was a parent carer raised questions regarding disclosure with the families they were working with – did they know? How would it have been managed if they had asked?

The outcome of this particular thread indicated not only the affect that assumptions about identity can have in the workplace environment but also the way in which stereotypes can be constructed – to be a parent carer of a disabled child is to not have a degree or professional qualification, but to be employed as a tokenistic gesture. Conversely, to be a professional is usually not to be a parent carer.

The data suggested different ways in which the experience of parent carers could be used in their professional role:

·         I can use my knowledge and experience as a parent carer to help other parent carers

·         I can use my knowledge and experience as a professional to help other parent carers

·         I can use my knowledge and experience as a parent carer to help my own family

  • I can use my knowledge and experience as a professional to help my own family

The majority of examples focussed on the way in which both personal and professional experience could be used to assist other families to “get the best out of the system” as one participant said. However, there were occasions in which this altruistic position was abandoned in a deliberate need to source service provision for one’s own child.

I needed to ensure the support required was put in anyway so I managed to convince somebody to give me extra weeks which they weren’t going to do...

So I used what I knew when I could, wherever I needed to, I used anything you know, anybody...

They said you will never get the support and when I did it was because of my professional role...

Even though I was just a shambles at the time I didn’t want them thinking... so I said I am also a professional so don’t patronise me....

Aside from occasions like these, motivations for entering the workplace appeared generally to come from a desire to use parental experience for the benefit of other parent carers, to make a positive difference and to prevent future families from having to go through similar battles.

I wanted to use what I had experienced personally and professionally to help other parents and to get the best out of the system.

Parent carer and professional roles

This follows immediately on from that of lived experience and was generated by that data which itself suggests parent carers of disabled children construct their identity around their caring, rather than their professional role. There may be any number of reasons for this, but during all of the data collection activities, the focal point for all respondents, regardless of where or when the data was collected, or who they were with, was their parent carer role. This was the role talked about, even when the tape was switched off, this was the role the workshops participants discussed before the session began, and this is the role that the email participants responded in. A definite “them” and “us” segregation was in operation as this memo notes:

27/11 There seems to be two distinct roles in operation here – “they” have the medical and theoretical knowledge but choose when and if to share this, but parents have the real knowledge borne of experience – lived knowledge and freely share this with one another

There were a number of incidents in which the parenting role was colonised by medicine and technology, requiring parent carers to make a deliberate stance to take back this role

I sort of lived by the technology but you know what, they told me I couldn’t intervene - if I thought my child needed help they had to sort themselves out, but I ignored them ...

And it wasn’t my child; my child was this medical thing that needed to be made better

It appeared that the battle to regain control of the parental experience was one which was not easily forgotten and that the battle lines drawn at this stage remained fully functioning and active, even many years later. The motivations to enter employment – to help other families – clearly demarked where loyalties lie and when the direct question was asked as to whose “side” participants were on, the unanimous verdict was that of parent carers. A lively debate took place in the workshop concerning how participants viewed themselves and whilst the majority expressed a desire to remain neutral, this revealed no one constructed their personal identity as “teacher”, “social worker” or “nurse” but all included “parent carer” as part of their professional identity.

During the coding cycle, the majority of points of conflict and struggle were linked to the parenting rather than the professional role, the data suggesting that:

·         Parent carers construct professionals as the opposition and thus there is a need to fight

·         Parent carers need to find information themselves as professionals do not support them in doing this

·         Parent carers are seen as in need of protection and professionals take a paternalistic attitude towards them

·         Parent carers are seen as of lower status


During these times of conflict, parent carers do not identify themselves with professionals, regardless of their role. This was addressed in the workshop and whilst participants were definite that they did not feel they did this, throughout the session “they” was used when speaking of professionals and services in contentious situations.

Data which questioned whether participants would continue in their current professional role in the field of disability service if they were no longer parent carers served to substantiate the view of identity being constructed around their caring role.  Only two participants said they would continue and both of these had remained broadly within their same service field after becoming a parent carer. The remainder said no.

No, I am fairly certain that my role, as enjoyable and satisfying as it is remains a direct consequence of my parent role. I would not choose to engage with the system without very good reason and would be happy to leave the work to someone else....

No, I probably wouldn’t because I don’t see I could do this job without it...

An additional conclusion is that a professional role has little or no impact upon a caring role, but that of a parent carer has a huge impact on a professional role, as one participant said about being a parent carer of a disabled child – it changed me professionally.

Personal and professional boundaries

Many of the conflicts found in the data arose from a seeming lack of respect or understanding for personal and professional boundaries on the part of professionals who were not parent carers. This lack of respect did not seem to extend to other professionals, suggesting that it was solely to do with parent carer identity. It was noted that:


Yes, [they] might have done an assessment on your child and sat and had a cup of tea in your front room and then you meet them somewhere and you don’t know anything about them...


One participant particularly disliked the informality that was being used with her where questions regarding her child were being asked in her workplace. Another participant found that once she moved roles, former colleagues began to make requests regarding her child during work time whereas before they had respected the fact that she was at work. She commented that:


And because they knew I had stopped working as a­­___they phoned me up and I said I’m working but they said, no, you’re not a ___anymore!


This statement was represented in the analysis as (Table 5):

Area of conflict



Work outside of the profession not respected

Seeing other roles as work

No longer of equal stauts

Table 5 – Excerpt from coding for social justice (2)


One instance was given where the participant, in her professional role, was introduced to fairly senior colleagues with the statement directing them to the identity of her child first and then to her. When this area was explored in the workshop, the consensus of opinion was that, yes, this does happen although it is very much dependent upon the background and profession of the person involved. Some professions were more likely to refer to a parent carer’s child than others and in my own account I observed that the most likely candidates to mention my child were those from social services.


            Linked to these boundary issues was the question of whether participants deliberately crossed the borders of personal/professional themselves with their child and family. When asked whether they were happy to attend social events with their child where they were likely to meet the parents they were involved with in their professional role, the majority response was an unqualified “yes”, with only one person other than myself preferring to keep the two very separate. Although this may be a geographical anomaly as Cornwall only has one other local authority boundary which is crossed by families at the top of the county, it suggests that parent carers are happy to mix personal and professional boundaries with other parent carers. That this was a decision based partly upon choice is another important factor.


Personal responsibility

Much of the second cycle data makes reference to how parent carers construct the need to resource their family as being their personal responsibility. 


No one else will look after me...Needed to act to protect child and family life, no one else will do this

Parents need to find solutions themselves...not expecting any help...still asking trusted people

If I didn’t do this job I wouldn’t know [anything]

I didn’t get a lot of support... the health visitor came once and then left...but I was not very proactive at getting help

I am responsible for getting services and is not freely offered


This refrain continued through each stage of data collection, with the scaling activity in the workshop for the statement “Parents are personally responsible for identifying and accessing the appropriate support for their family” scoring at the very top of the scale – “the statement is very true”. The most forgiving explanation for this was that professionals actually did not know what was available in the area and how it could be accessed, whilst at the other end of the spectrum, it was construed that professionals working with families of disabled children deliberately withheld information.


But who are they to say when parents are ready for information?...They are trying to be protective of the parents but when you are in that situation you just want up front disclosure...


A number of participants recall professionals refusing to offer support group leaflets to newly diagnosed parents as they didn’t think “they were ready”. One participant recalled an incident where the leaflets she gave to a professional were returned to her rather than her receiving the actual information she had requested. Another participant talked of how she had spent considerable time trying to work out who was who in service provision and still did not feel she had it figured out.  There were few instances of information or support being freely offered, the overwhelming feeling was that parent carers always needed to find things out for themselves.


Information and knowledge

At the outset of the project, it was expected that information and knowledge would form a majority part of the findings, being a key resource in the lives of parent carers of disabled children. However, it seems that rather than occupying the central role, information and knowledge underpin the other key categories either through access being denied or through parent carers needing to be creative and resourceful to identify useful appropriate information. Information and knowledge were constructed as illustrative of the power dynamic as parents freely, openly and deliberately worked to share information and knowledge between and amongst themselves in as many ways as were possible, in a direct contrast to the attitudes of professionals.


You gather all the information you can and you want to talk to other parents...


And she [another parent carer] came round and sat with us for three hours and talked through things and she was just amazing...I just held her in regard because straight away she said “I’ll support you”...


I let parents know that I’ve been there...and I still am and I understand what they are going through...


In contrast, a number of responses recorded occasions when they were informed that a service was to be delivered to their child without any explanation of what or who that service actually was.


She said I’ll need portage - and that was it! When the portage workers came they explained everything...


And I didn’t know what that was...



I was particularly puzzled by the data concerning difference in which participants said that they thought having a disabled child was a “good thing”:

I love it... I totally love this different world

I feel honoured...

Lucky...I wouldn’t have it any other way

I love it that my child is different...

A memo concerning this records my response:

03/02 When I read or hear opinions about being lucky, being chosen, being honoured and that it is a “good thing” to have a disabled child, it arouses feelings of annoyance in me as it seems like a deception that society has “sold” parents in order to assuage their feelings of guilt and shame and to help cope with mixed conflicting feelings around disability...I recognise the attitude as a necessary coping system for some, however it then fails to challenge the systems which make it necessary and the status quo is preserved.

The need to explore this issue a little more resulted in one of the workshop activities being designed around perceptions of difference. Six choices were offered and participants were asked to indicate the responses that were closest to their personal and working experiences:

1.      To be the parent of a disabled child is to be chosen, it is an honour

2.      The disabled child is the one chosen and should be honoured/venerated

3.      To be the parent of a disabled child is a tragedy and deserves pity

4.      Parents are to be blamed for having a disabled child

5.      Parents should be ashamed of their failure to produce a normal child

6.      Disability is okay and can be celebrated where appropriate

The discussion surrounding this focussed on the way in which diagnosis affected how parent carers felt about difference with some diagnoses being more “acceptable” than others. However, the consensus of opinion was that option 6 was preferred but with a minor adjustment to read:

Disability is okay and your child can be celebrated where appropriate

The option that most accurately reflected the workplace culture within Cornwall was seen to be both numbers three and four:

To be the parent of a disabled child is a tragedy and deserves pity

Parents are to be blamed for having a disabled child

Systemic barriers

The final concept to emerge from the data concerned the ways in which “the system” hindered families from engaging in the ordinary lives that families without disabled children took for granted.  These barriers were rarely explicitly articulated in the interviews or even in the workshop and needed careful study to attempt to extrapolate what actually was meant from the responses. The general finding was that in negative contexts participants conflated both systems and professionals into one homogenous “they”:


She said they don’t give statements...

They were desperate to label my child...

And they don’t do assessments...

They couldn’t get any in the school because there aren’t any...

A researcher unfamiliar with the various systems in Cornwall would have encountered some difficulties in trying to track who each of the “they”s referred to, and it seemed that the barriers were so accepted as normal that it was difficult to even notice their presence any longer.  The failure to articulate these barriers suggests these have simply become internalised as ‘one more penalty imposed upon disabled families’ (Read et al 2006:43). The perhaps unconscious segregation process in operation was evidence through the constant use of “us” and “them” throughout the project.

The theory

These previously outlined key concepts, generated directly from the data, each of which serves as a conceptual explanation of a pattern of behaviour (Holton 2007:268), when linked together in a final theory, offer an account of the experience of being a parent carer of a disabled child working together with professionals whilst at the same time receiving services from those same professionals.


Working together....?


Parent carers of disabled children who gain employment within the same service field as those professionals working with their child and family, find themselves in the unique role of both service user and service provider/developer. This dual identity allows a vantage point unavailable to colleagues working alongside them, which may in some respects be considered privileged or inside information, which can be utilised for positive and productive purposes to benefit families of disabled children and their own families.

The key to the successful securing of employment lies in the lived experience of the parent carers which appears to be about overcoming adversity, triumphing against the odds and being victorious in a system which is designed to normalise disability through interventions aimed at fixing or eradicating the problem. Foundational to this success, are information and knowledge which parent carers have had to source for themselves, often through a long hard slog to identify entitlements and rights to services - information which is not always freely given by professionals working with families. The sense of personal responsibility to resource one’s own family has the effect of turning this information into hard won currency - the property of parent carers, to be freely shared amongst themselves. The notion of this material as having been “stolen” from the professional knowledge keepers acts to identify the main perpetrators within parent carer circles as key informants, prominent in local networks and able to informally advise and support others within the group. These are the skills which enable successful employment within the field of services to families of disabled children. 

Information and knowledge lead directly to control and choice through both the awareness of rights and entitlements and that of available local service provision. Families are no longer in the position of needing to go “cap in hand” to a paternalistic welfare system but are able to take empowered decisions regarding the types and level of support appropriate for their family. This again rests on the concept that parent carers have personal responsibility to take action for their family and this is driven by the societal notion of blame and tragedy and internalised oppression in which parents are responsible and expected to heal, fix and protect their child. These are further reinforced when a professional ownership of care model is invoked by professionals who colonise the parental role with technological and medical interventions, all which aim to eradicate the problem – the child’s impairment.

This contrasts sharply with the aims and motivations of parent carers who, despite initial efforts to find a “cure” for their child, then focus their energies on the system, for it is here that they triumph, it is systemic barriers which are overcome, for it is these physical and social constructions which disable their child and their family, not the impairment. For parent carers, difference can be celebrated appropriately and the child is accepted as the gift that any child is, regardless of the nature or cause of their disability. 

The final result is that when finding themselves working alongside professionals who operate from such a radically opposing position, parent carers of disabled children amalgamate the key concepts of lived experience; personal responsibility; information and knowledge; control, choice and difference into a single, coherent position – the assumption of the deliberately politicized identity of Parent Carer. It is from the security of this political identity that they seek to challenge the medical and individual models of disability surrounding them.

So for this group of participants to whom social justice is regularly denied through the systemic barriers and institutional oppression which characterises their interactions with professionals (Edworthy 2005:12), the value of lived experience expressed through the adoption of a politicized identity, created as informed, empowered, aware and confident, offers a valuable method of achieving equality in workplace relationships.



The important insight lies how to make proper use of...knowledge (Strübing 2007:587)

Opposing models of disability and impairment frame and underpin the theory generated by the data from the research project as systems, which were designed by able-bodied professionals in ways which perpetuate their own professional agendas (Davis 1993:199), are challenged and overcome by resourceful Parent Carers who construct their identity as a political statement. The conflicting positions occupied by professionals either with or without lived experience of disability result in working relationships which have quite different motivations, aims and goals. For those who seek to eradicate or fix the impairment through the imposition of normality (Scott-Hill 2004:88), interventions which focus directly on the child and family are designed, whilst those who look to the wider arena of society as the cause of the disability focus their efforts on the systemic and structural barriers (Oliver 1993:65). The parent carers in this study all occupied the ideological stance which sees disability as the socially constructed phenomenon resulting from society’s response to the impairment of their child (UPIAS 1976:3-4) and each had personal experience of the unequal power relationships between service users and professionals resulting from these opposing views of disability. When these parent carer/professional relationships, which are already a cause of tension on both sides, are formalised in situations where parent carers are employed alongside professionals involved in delivering services to families of disabled children, on equal terms with supposed equal status, the political identity of Parent Carer is used as the mechanism through which the power imbalance is addressed.

The inside information or privileged knowledge possessed only by those who have experience of a phenomenon demonstrates the shared identity and solidarity which characterise oppressed marginalised and minority groups (Nelson & Prilleltensky 2005:27), of which parent carers are one (Murray & Penman 2000). The involvement with other parent carers through a range of support groups, web based forums and consultation events leads to increased emotional well-being (Baum 2004:381) and it is through this involvement that information on the range of issues that concern parent carers of disabled children is shared (Beresford et al 1996). Research notes that parent carers need to ‘be very active indeed’ (Read et al 2006:43) in their search for information if they are to access the services they want, and parent support groups often provide the primary forum through which information is disseminated. Avery (1996) notes how parents become experts and together form a ‘knowledge capital’ that cannot be accessed in any medical office or professional text (p.122).  It is through these networks and groups that the skills for employment are practiced ‘and the emergence of parental visionaries and role models’ (Goodley & Tregasksis 2006:642) is seen. Herein lies the power in experience that cannot be gained through theoretical knowledge or qualifications.

Furthermore, the manner in which this inside information is constructed as a mechanism to foster equality, or even superiority, reflects the way in which the unequal power relationships between parent carers and professionals are experienced as a matter of course (Read et al 2006:23). Where deliberate power sharing is illustrated clearly through shared knowledge and information, effective and respectful listening and practice which values diversity (Moss 2007:39) such mechanisms become redundant. However, the lived experience of this group of parent carers is that whilst good practitioners can mediate stress, the difficulties they have encountered have made them ‘feel worse, particularly if their views on needs differ from those of the professionals’ (Beresford 1995 cited in Read et al 2006:43). The socially devalued caring role (Williams 1999:5) that comes from parenting a disabled child, linked with the financial disadvantage that caring brings (Contact a Family 2010:6) means that parent carers often begin their employment in a position of inequality when compared with their peers. The struggle needed to bring liberation and regain power from such circumstances necessarily requires the explicit challenging of ‘commonly help assumptions and consciousness raising about the sources of problems’ (Nelson & Prilleltensky 2005:27) and it is for this purpose that parent carers find security and strength in the adoption of an overtly political identity.

Throughout the project, participants identified themselves as “Parent Carers” of disabled children rather than as “mothers”. This identification adds weight to the idea of Parent Carer being a politically constructed identity in its ability to depersonalize the challenges and conflicts that are faced, whilst at the same time protecting the mothering relationship that parent carers continue to have outside of the workplace. By bringing some distance to their relationships, parent carers in employment are making an attempt to avoid some of the ‘discrimination by association’ (Carver 2008) which comes from the impairment of their child and also the way in which society disables the whole family (Rogers 2007:136) of a disabled child. In addition, the powerful ideas of a ‘good’ mother’s role in society as ‘child-centred...emotionally absorbing, labour intensive,’ (Hays 1996:47) in which the mother ‘is the sole source of child guidance, nurturance, education, and physical and emotional sustenance’ (ibid) mean that the choice to construct an identity as a Parent Carer brings release from certain of these expectations during working hours (Johnston & Swanson 2007:448).

Discourses of tragedy and blame in which the inability to produce a “normal” child is the fault of the mother and whose flaws become the mother’s own (Avery 1996:117) further strengthen the argument to identify as a Parent Carer within a workplace environment which may have been constructed not to develop the struggle for social change and equal opportunity but for the inappropriate disability services currently in existence in one form or another (Davis 1993:199).

The experience within this study was that the opposing constructions of disability and impairment effect, in some professionals, an inability to respect boundaries, whether personal/professional in the workplace or those of the caring role through the medical and technological colonisation of care. This lack of regard links closely to the construction of difference, as whilst for the participants in the study, difference could be appropriately celebrated and may in itself be a “good thing”, for professionals operating within a medical/individual model of disability, difference is tragic and “awful” (Morris 1993:101), in need of outside intervention designed to eliminate the impairment through the imposition of normality (Scott-Hill 2004:88). It is this adjudging of difference and impairment as negative which makes disabled children and their families ‘public property’ and allows ‘non-disabled people to feel [they have] the right to invade our privacy’ (Morris 1993:105).

The adoption of the politicized identity of Parent Carer appears to have no directly ameliorating effect upon this invasion of privacy and may actually be thought to invite the informality so disliked by one participant. However, this is forgetting the choice and control that is associated with the deliberate putting on of an identity in which others (the professionals without lived experience) are deliberately excluded. The power that is exercised (Tremain 2005:4) through the opportunity of “border crossing” identities (Grant et al 2007:569), unavailable to others serves as a method of deliberate self-empowerment in such situations.

            However, the dangers inherent in this minority group approach lie in its potential, through exclusion of others, to reinforce the categorization of parent carers of disabled children as a separate group (Shakespeare 1996 in Faucett 2000:23).  In addition, to deliberately adopt a particular identity is necessarily to reject other identities:

Identity as a [Parent Carer] may have a valuable strategic function...yet to the extent that identity always contains the spectre of non-identity within it, the subject is always divided and identity is always purchased at the price of the exclusion of the Other (Fuss 1989:102-3)

The most surprising finding then from this study was this focus on identity rather than interpersonal workplace relationships. This may be an indication of poor quality data collection activities which failed to effectively guide the study (Stern 2009:56), or more positively, that the data itself broke through assumptions (Strauss & Corbin 1990:27) and enabled the discovery that is the purpose of grounded theory research (ibid:50). This new direction suggests that further research in this area should include identity theories, particularly group, individual and worker identity (Stets & Burke 2000:226) and the way that attachments to any one of these can make already contested relationships (Goodley & Tregasksis 2006:644) more problematic.




The limitations of the research project concern firstly, the constraints of time and resources. As I was not being employed as a researcher, the work needed to fit in with my other commitments and with my caring role. Inevitably, events occurred meaning that a project which began at a fairly stable point in both my work and family life ended whilst some issues were in crisis.  The time available for in depth analysis was therefore reduced somewhat and one intended part of the project – the shared dissemination – was abandoned altogether.

Secondly, the demographic spread of the participants was narrow, with no male or BME participants being included, making the findings representative of only a small group of parent carers. The influence of gender was not explored in any way during the project. Thirdly, this initial study is context bound with no aim of generalising these results and as such may be of limited interest. However, as a substantive theory, the research findings may be a stepping stone to further research (Punch 2000:104) which will go on to produce a formal grounded theory with wider generalisablity (Glaser & Strauss 1967:79).  Further limitations come from the structure of the study in which only one side of a relationship was explored. Investigations into how the non parent carer professionals experience workplace relationships may produce valuable insights to extend and give depth to the project. Likewise, research into identity theory would serve to give greater context to the findings from this study. 

Finally, my position as practitioner researcher with a group of people with whom I share an identity undoubtedly affected the data collected, both in my choice of pertinent responses and through the participants’ interaction with me, particularly the ways in which my identity as a member of the “in group” – parent carer – may have caused me to make more positive evaluations of that group (Stets & Burke 2000:226) even though the group status is relatively low compared to that of the “out group” – the professionals (Ellemes, Spears & Dooje 1997 cited in Stets & Burke 2000:226).However, throughout the project this shared identity has been made transparent and was viewed as a resource rather than a problem and has offered a vantage point unavailable to those outside of this group (Mruck & Mey 2007:519).


Implications for future practice

Practitioner research should not produce work which merely sits on the shelf gathering dust, rather its aim is work which will inform and guide others in the enhancement and advancement of practice. Dissemination of a theory written in a purely academic style is unlikely to be effective (Fox et al 2007:171) meaning that dissertations may need to be converted (Corbin & Strauss 2008:288) into a more readily recognised format.  For this project, a group was planned solely aimed at discussing and planning any dissemination or use of the material in order that the collaborative paradigm which framed the project should continue right through to its projected use. Although this session did not take place due to time constraints, there is no reason why it should not convene at a later point. As parent carers who are practitioners are the most likely audience for the findings, it is hoped that the theory could be included in future participation training sessions to highlight some of the difficulties that are encountered within practice and as a way of ensuring the mechanisms that may be employed by practitioners are fully understood by those who are using them. In the true spirit of practitioner research, my skills and practice abilities have certainly been enhanced through conducting this study, highlighting the need for increased reflexivity as I examine which particular identity I am practicing from at any one point and seek to be able to adjust that when and  if needed.


Research validity

The need to verify the theory generated is of less concern in grounded theory than the evidence for the emergence of the theory from the data (Glaser & Strauss 1967:26,28). Within method triangulation in which the four different data collection techniques were used to measure the same variables (Casey & Murphy 2009:41) helps to confirm the findings; the inclusion of an audit trail for the examiners (see data collection p.) lends a modicum of legitimacy to the theory whilst the re-examination of the data in search of negative cases (ibid:27) served to affirm the sense of the theory (Stern 2007:114).

 Grounded theories arise from positions of flux, ambiguity and choice and as such cannot be replicated (Stern 2009:61) rather than being ‘stable, constant and standardized [they] are individualized according to the topic of the study, differences in participants and settings and the personality and various knowledge bases of the users (Morse 2009:18). Constructivist grounded theories do not seek truth, but are instead aware that ‘what we take as real, as...knowledge... is based upon our perspective’ (Charmaz 2000:523).



The implication that the theory somehow formed itself separately from any involvement on my part is one of the objections to grounded theory terminology (Stern 2009:59, Kelle 2007), for theory results from choice, interpretation and construction of the data and does not ‘rise up off the page’ (Stern 2009:59). This does not negate the relevance of the findings (Strauss & Corbin 2008;12) but simply reflects the analytic decisions made by the particular researcher at that particular point in time.  I could have chosen to follow a different thread in the data, of which there were undoubtedly many, in which case a different, but equally valid theory would have been generated as data collection strategies would have taken another direction. Reflecting upon the project, one possible thread would have been to explore which models of disability best described the perspectives of the participants (Landsman 2005:126) as this would help generate further conceptual explanations of workplace relationships. Nevertheless, the choices made effected one particular construction of the studied world, not an exact picture of it (Charmaz 2006:10) and it is from here that the findings are able to posit a stance with which even the participants may not initially be familiar as they attempt, through the stories they choose to tell, ‘to explain and make sense of their experience and lives, both to themselves and to the researcher’ (Corbin 2009:40).

Grounded theories therefore, do not give a straightforward, objective representation of the world and as such may fail, in the eyes of advocates of more “scientific” methods, to produce valid findings. This rejection of a positivist paradigm in which results aim to be replicable and generalisable makes the satisfactory completion of grounded theory research in which results are more conceptually abstract (Hutchinson 1993 cited in McCann & Clark 2003:21), more problematic.  The ongoing debate around methodological reliability (Hood 2007; Charmaz 2009) which proposes either the rigid reliance upon techniques and procedures or the ‘smorgasbord table’ character of the method (Mruck and Mey 2007:525) may mean, ‘the application of the method is asking too much’ (ibid.). For me, this was demonstrated by a constant uncertainty as to whether I was really using the method correctly and therefore whether I had genuinely produced a ‘grounded theory’. Charmaz’s (2009) observation that grounded theory has become a more general method, requiring both application in diverse substantive areas and ways in which to think about and conceptualize data (p.127) gave some reassurance that correct use of methodological techniques were not the only markers of a successful grounded theory study. Using these criteria, the theory can undoubtedly be classified as grounded in the data, yet I still remain unconvinced.  I am certain that I have produced more than simple description and that the theory really does ‘provide answers to the why questions’ (Becker 1993 cited in Maijala, Paavilainen & Astedt-Kurki 2003: 55) and I am satisfied that my theory is effective in giving an explanation of the inter-relationships between and among concepts (Weiner 2007:308), it is perhaps a confidence in the abstract quality of these concepts that is missing.




Handling your discoveries...(Richards 2009:76)

More than thirty years on from the famous UPIAS statement in which disability was located, not in impairment, but in societal structures and systems which limit opportunity (UPIAS 1976), parent carers of disabled children still find themselves at the intersection of the competing discourses (Landsman 2000:121) of medical and social models of disability. Whilst the normalising influence of the medical model is well documented in the literature, the effect of the social model’s severance of the causal links between disability and physical impairment (Thomas 2004:23) mean that parent carers who deal daily with real bodily disfigurement and dysfunction become members of a social minority group oppressed by both models (Landsman 2000:137). The perceived personal responsibility to identify and access limited resources in a culture where ‘the socio-political map of disability has radically changed as more people have chosen to define themselves as disabled’ (Stevens 2009), makes the role of a parent carer employed in disability services one which is diametrically opposed the majority of their colleagues. The defensive position identified through this study in which a political identity is adopted is only one response to this position, others may be available, yet as this study investigates a population about which very little has been written, these are currently unknown.

It was with some regret then that I viewed the theory emerging from the data analysis. To have grappled intensively with an unfamiliar research method and to have fully invested both self and time in the project, only to return to that same old chestnut – social versus medical/individual models of disability – was profoundly disappointing. I had been hoping to produce new and powerful explanations (Leigh Star 2007:77) of ‘a latent pattern of behaviour that holds significance within the social setting under study’ (Holton 2007:268) and by doing so, in some way to solve or eliminate the problematic areas in workplace relationships.  However, this was forgetting the purposes of practitioner research which are to develop theoretical perspectives which aim to aid the understanding of the researcher (Fox et al. 2007:14) not to find solutions.

What is possible though, is for this renewed awareness of these problematic areas to be raised and jointly addressed through both an individual and organisational commitment to social justice. To recap, a social justice approach to practice is one in which all individuals are viewed as being intrinsically of equal worth with equal rights to meet basic needs (Parsons 1996:6) but to be equal does not necessarily mean being the same (Thompson 2003:7). Therefore professional practitioners need not be afraid that taking a social justice approach means discounting the years of professional training and experience they may have undergone in an attempt to level the playing field (Craig 2007:95). Instead, equality can be sought through communication - having a shared understanding of what is being said (Sinclair & Grimshaw 1997:239) and by appreciating the different kinds of knowledge base that each party can bring (Christie & Mittler 1999:234). In addition, the normative discourses of power and knowledge which underpin medical/individual and social models of disability need to be exchanged for that of awareness raising and transformation, where not only are imbalances of power noted but also challenged and openly articulated so that this change can begin (Dalrymple & Burke 1995:15). The pursuit of social justice may then effectively overcome the dualistic character of disability models in all their variants by subverting the focus from either society or individual onto that of community, ‘redefining [disability] as an integral part of all human experience and history’ (Garland-Thomson & Holmes 2005:73). Workplace relationships can then be transformed through practice in which both partnership and participation are valued as mechanisms to achieve personal, collective and relational well-being (Prilleltensky & Nelson 2002:125) and the compulsion for dominance is freely relinquished. This well-being is then demonstrated by the presence of enabling organisational and community infrastructures (ibid: 11) in which the need for the offensive or defensive adoption of identities is no longer required. However, until this atmosphere of shared values is realised and social justice is truly enacted within parent carer and professional workplace relationships, the study of these interactions and the identity mechanisms utilised within them offers a rich and rewarding field for future research projects.

With this in mind, I was able to see how the theory authenticated my own experience as a parent carer working as a professional and also how the transformation of my own practice could begin from a deeper knowledge of the mechanisms being employed by the various parties as they attempted to work together. In addition, the dimension of identity theory serves to deepen and nuance the ways in which disability models affect the lives of parent carers of disabled children within the workplace. This could indeed be the ‘new discovery’ (Strauss & Corbin 1990:50) promised by the grounded theorists.


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Appendix 1 – Ethical Approval






Appendix 2 – Invitation to participate and consent

Liz Farmer




                                                                                                                                                                07852 445132


                                                                                                                                                                September 2009


Dear Colleague,


Thank you for your interest in participating in the research module of my studies. Please find below a detailed outline of the research purposes and plans along with contact details of the supervising institution and staff member. I hope this will answer any questions you may have and I very much look forward to completing my research with you in the near future.


Title:     Working together? Exploring the relationships between parent carers of disabled children and other professionals, when working together in planning, consultation and delivery of services in Cornwall.


Aims:    The aim of this proposed research is to explore in depth the experiences of parent carers who are working with professionals, often in multi agency settings, whilst at the same time continuing to receive services to both their families and their child from the same agencies, teams and often the same people that they work with. This piece of qualitative research seeks to capture a wide range of experience and opinion with the aim of producing a theory to articulate what it feels like to be in this unique position. The central research question framing the study is as follows:

How are working relationships between parent carers of disabled children and the professionals who work with them, experienced by the parent carers?


Purpose of the research: The purpose of this research is primarily to fulfil the academic requirements of an MA rather than for any commercial gain or policy purposes and the research has not been sponsored by any statutory or voluntary organisation although my employers are supporting my own professional development. The resulting dissertation may be made available to the public via the academic library and extracts may be made available to inform training and employment processes if appropriate and with the necessary consents from participants.


Academic details: The dissertation will be submitted to the University College of St Mark & St John, Plymouth as part of an MA in Professional Practice (Counselling, Guidance and Support). The supervisor is Sue Wayman, Senior Lecturer in Youth and Community Studies. She can be contacted at the above institution or by email:


All participants need to fulfil the following criteria: Be a parent carer of a child aged 0-18 years who is receiving services from Cornwall’s Children’s Service Authority- e.g. Social Services; Special Education; Children’s Community Nursing Team; Community Paediatrician; Speech and Language; CAMHS; Physiotherapy; Early Support; Early Years Inclusion Teams or other relevant specialist service delivered through the statutory or voluntary sector and

be in paid employment at any level within a specialist service area within Cornwall.


Participation will take two forms – an individual interview and/or participation in a small focus group. All interviews will be scheduled for a time and place to suit you and the focus groups will run at a central venue, one in the day time and one in the evening.


Consent, confidentiality and anonymity:  All data collected will be treated in a manner so as to protect the confidentiality and anonymity of respondents and consent can be withdrawn at any point in the proceedings. Interview records and transcripts will not be made available other than for assessment purposes and all data will be obscured to protect respondent identity. The ethical guidelines for academic research will be strictly adhered to and the research proposal has passed the University’s ethics board and a certificate of ethical approval has been given.


The final dissertation will be available for respondents to read following assessment at which point the contents will become the academic property of the University.


If you are able to participate in this research please indicate your proposed participation by returning the attached consent form as soon as possible.  The information above will be recapped prior to participation and final consent given.


Please contact me if you have any further questions.



Many thanks,




Liz Farmer

























To:          Liz Farmer









Yes, I am interested in participating in the research Working Together?


I am available for:            Individual interview                        and/or

                                                Focus group daytime                                                                                                     


                                                Focus group evening                                                                                                                     





Contact Address

work/home (please delete)












These next questions are to check your eligibility to participate:






Child’s age



Please indicate any access requirements you may have:




Consent to participate:








Appendix 3 – Workshop activities

Please rank the following concepts in order of relevance to your professional working relationships. Use the blanks for anything you feel is missing from my coding of the interviews.



Value of lived experience






Personal responsibility






Stereotypes – parent carers/professionals/children


Problems with ‘the system’








Expectations of ‘professional’ behaviour





Activity 2

Hands up if you...      identify yourself as the parent carer of a disabled child

                                    Identify yourself as the mother of a disabled child

Which is preferred?


Activity 3

Please scale the following statements which have been formulated from the interview data as to how true this is for you. There is no right or wrong and the aim is to discover what is happening rather than what you would like to be happening!

A.     Very true

B.      Slightly true

C.      Not true

There are points between the letters and you need to reach a consensus within the group of where your marker must go.  At the end the groups will come together and we will make a final mark to represent the group as a whole.

A     .    .    .    .   B   .    .    .    .   C

1.      Professionals do not appear to respect the personal boundaries of parent carers of disabled children working as professionals in the same way that they appear to do for colleagues who are parents of non –disabled children.

A     .    .    .    .   B   .    .    .    .   C


2.      Parent carers of disabled children working in a professional role construct their identities around their caring role, rather than their professional role.

A     .    .    .    .   B   .    .    .    .   C


3.      Parents are personally responsible for identifying and accessing the appropriate support and information for their family.

A     .    .    .    .   B   .    .    .    .   C


4.      When parent carers of disabled children talk in their professional role about services, ‘they’ is shorthand for the system as a whole rather than meaning individual professionals.

A     .    .    .    .   B   .    .    .    .   C


5.      Personal/lived experience of life with a disabled child is of equal or greater value than professional/theoretical qualifications.


A     .    .    .    .   B   .    .    .    .   C


For this last question, the rating scale changes to:

A.     Identify with parents

B.      Try to remain neutral

C.      Identify with professionals

In my professional role I generally...

A     .    .    .    .   B   .    .    .    .   C

Please think about your internal reference point rather than the way you think you should, or do, act outwardly. There is no right or wrongs and only the whole group response will be used to build the theory so please be honest.

Activity 4


Choice and control around disability and difference play a role in the relationships between parent carers of disabled children working as professionals and the other professionals they work with.

There are a number of perspectives on this including, but not limited to:

7.      To be the parent of a disabled child is to be chosen, it is an honour

8.      The disabled child is the one chosen and should be honoured/venerated

9.      To be the parent of a disabled child is a tragedy and deserves pity

10.  Parents are to be blamed for having a disabled child

11.  Parents should be ashamed of their failure to produce a normal child

12.  Disability is okay and can be celebrated where appropriate

Which of these is closest to your experience in your work relationships – ie what is the prevailing attitude?

Which of these is closest to your own feelings?

Do they match?

Please try to reach a consensus of opinion in the small groups before we bring together the whole group response.

Appendix 4 – Workshop handouts


 ‘The focus on the individual with a disability ignores the extent that society favours able bodied people and excludes people wth disabilities from, for example, buildings, committees and employment opportunities. Some have argued that the social handicaps should be the subject of change rather than fitting the person to an arbitrarily defined norm set by able bodied people’ (British Psychological Society 1989:4)

Impairment – the lack of part or all of a limb or having a defective limb, organ or mechanism of the body

Disability – the loss or limitation of opportunities hat prevents peole who hve impairments from taking part in the normal life of the community on an equal level with others due to physical and social barriers (UPIAS)


British Psychological Society (1989) Psychology and Physical Disability in the National Health Service Report of the Professional Affairs Board of the British Psychological Society, Leicester

Union of the Physically Impaired Against Segregation (1976) Fundamental Principles of Disability, UPIAS, London









To Deny or Not to Deny Disability

by Vic Finkelstein


Disabled people have always struggled against the way they have been prevented from taking part in the normal activities of their communities. More recently, however, these struggles have taken a step forward. Disabled people have begun to organise for their emancipation and joined the growing numbers of groups struggling against social discrimination. We are taking a deeper look at ourselves, at the way we are treated and at what is meant by disability. We have noticed that it has nearly always been others who have researched, written, analysed, examined our history, and proposed their knowing solutions for us. More and more disabled people have had experience of "disability experts" and increasingly we have come to recognise the humiliation this relationship may take for granted. Can it be that having others research on the lives of disabled people (rather than us expressing our own experience) has something to do with the very nature of disability? What, then, is disability?

To many of us, the single factor that unites us together in our struggles is that it is our society that discriminates against us. Our society disables people with different physical impairments. The cause, then, of disability is the social relationships which take no or little account of people who have physical impairments. If this definition is correct, then it should be possible to prove that other social groups can become disabled, in an imaginary society which took no account of their physical status. In such an imaginary society it would be possible for physically impaired people to be the able-bodied!

Let us see whether we can turn the world upside-down and show that disability is a socially caused problem. An upside-down world where the "able" become the "disabled" and the "disabled" become the "able-bodied" and where we show, too, that far from adjusting and accepting disability perhaps, just perhaps, it is healthier to deny and struggle to eliminate disability?

Let us suppose that those who believe in segregation could really have their way. We will imagine a thousand or more disabled people, all wheelchair-users, collected together and settled in their own village where they had full management and democratic rights. We will suppose able-bodied people do not often visit the village and that the wheelchair-users control all aspects of their lives. They make the goods that they sell in their shops with special aids, they work the machines that clean the street, run their own educational colleges, banks, post offices, and transport system of the village, and so on. In fact, for the villager, being in a wheelchair is like everyone else in their world of people that she or he meets in daily life. They see wheelchair-users on television and hear them on radio. Able-bodied people, however, are only rarely seen and little understood.

In the course of the life of the village the wheelchair-users plan their lives according to their needs. They design their own buildings to suit their physical situation. One thing the wheelchair-user architects quickly discover in this village is that because everyone is always in wheelchairs there is no need to have ceilings at 9 feet 6 inches high or door heights at 7 feet 2 inches. Soon it becomes standard practice to build doors to a height of 5 feet and ceiling or rooms to a height of 7 feet 4 inches. Naturally the building codes set out in the regulations made these heights standard. Now everyone is happy in the village; all the physical difficulties have been overcome and this little society has changed according to the physical character of its members. At last the buildings and environment are truly in tune with their needs.

Let us say that when all the adjustments had been made and became fixed, in this wheelchair-user society, a few able-bodied had, through no choice of their own, to come and settle in this village. Naturally, one of the first things they noticed was the heights of the doors and ceilings. They noticed this directly, by constantly knocking their heads on the door lintels. Soon all the able-bodied members of the village were also marked by the dark bruises they carried on their foreheads. Of course, they went to see the village doctors, who were, naturally, also wheelchair-users. Soon the wheelchair-user doctors, wheelchair-user psychiatrists, wheelchair-user social workers, etc., were involved in the problems of the able-bodied villagers. The doctors produced learned reports about the aches and pains of the able-bodied in society. They saw how the bruises and painful backs (from walking bent double so frequently) were caused by their physical condition. The wheelchair-user doctors analysed the problems and wrote their definitions. They said these able-bodied people suffered a 'loss or reduction of functional ability' which resulted in a handicap. This handicap caused a 'disadvantage or restriction of activity' which made them disabled in this society.

Soon special aids were designed by the wheelchair-user doctors and associated professions for the able-bodied disabled members of the village. All the able-bodied were given special toughened helmets (provided free by the village) to wear at all times. Special braces were designed which gave support while keeping the able-bodied wearer bent at a height similar to their fellow wheelchair-user villagers. Some doctors went so far as to suggest that there was no hope for these poor sufferers unless they too used wheelchairs, and one person even went so far as to suggest amputation to bring the able-bodied down to the right height. The able-bodied disabled caused many problems. When they sought jobs no one would employ them. Special experts had to be trained to understand these problems and new professions created for their care. When one able-bodied disabled person applied for a job as a television interviewer, a special medical examination had to be arranged to see whether he was fit for this work. In the end it was decided that be was not suitable. It was felt, the wheelchair-user doctor pointed out in the case file, that a television interviewer wearing a helmet all the time would not be acceptable. Since the cameras would only show the top of his head because the able-bodied were always bent double by the harness they had to wear, he would not be suitable for interviewing. It is well known, the wheelchair-user doctor wrote, how difficult it is to communicate with the able-bodied because it is not easy to see their facial expressions and meet eye-to-eye while they bent double

In time special provision had to be made in the village to provide a means of obtaining money for these able-bodied disabled to live. Voluntary societies were created to collect charity and many shops and pubs had an upturned helmet placed on the counters for customers to leave their small change. Painted on the helmets were the words "Help the able-bodied disabled". Sometimes a little plaster-cast model would stand in the corner of a shop - the figure bent double, in their characteristic pose, with a slotted box on the figure's back for small coins.

But one day, when the able-bodied were sitting together and discussing their problems they realised that they were never consulted by the wheelchair-users about this in the little society. In fact they realised that there may be solutions to their problems which had never occurred to the wheelchair users simply because they never looked at these in the same way as those who had them. It occurred to these able-bodied disabled people that perhaps the cause of their problems had a social solution - they suggested that the door and ceiling heights be changed! They formed a union to fight segregation. Of course some of the wheelchair-users thought the able-bodied disabled were failing to accept and adjust to their disabilities, and they had chips on their shoulders because they argued so strongly for social change and a change in attitudes by the wheelchair-users. The able-bodied disabled even argued that perhaps, just perhaps, their disabilities could be overcome (and disappear!) with changes in society.


Source: Magic Carpet, New Year 1975, xxvii, No. 1, pp 31 - 8. [from Brechin, A., Liddiard, P. and Swain, J. (Eds.) (1981) Handicap in a social world, Hodder and Stoughton.]

Accessed 08/03/2010


Jordan W. Smoller University of Pennsylvania

Childhood is a syndrome which has only recently begun to receive serious attention from clinicians. The syndrome itself, however, is not at all recent. As early as the 8th century, the Persian historian Kidnom made references to "short, noisy creatures," who may well have been what we now call "children." The treatment of children, however, was unknown until this century, when so-called "child psychologists" and "child psychiatrists" became common. Despite this history of clinical neglect, it has been estimated that well over half of all Americans alive today have experienced childhood directly (Suess, 1983). In fact, the actual numbers are probably much higher, since these data are based on self-reports which may be subject to social desirability biases and retrospective distortion. The growing acceptance of childhood as a distinct phenomenon is reflected in the proposed inclusion of the syndrome in the upcoming Diagnostic and Statistical Manual of Mental Disorders, 4th edition, or DSM-IV, of the American Psychiatric Association (1990). Clinicians are still in disagreement about the significant clinical features of childhood, but the proposed DSM-IV will almost certainly include the following core features:

1. Congenital onset
2. Dwarfism
3. Emotional lability and immaturity
4. Knowledge deficits
5. Legume anorexia

Clinical Features of Childhood

Although the focus of this paper is on the efficacy of conventional treatment of childhood, the five clinical markers mentioned above merit further discussion for those unfamiliar with this patient population.


In one of the few existing literature reviews on childhood, Temple- Black (1982) has noted that childhood is almost always present at birth, although it may go undetected for years or even remain subclinical indefinitely. This observation has led some investigators to speculate on a biological contribution to childhood. As one psychologist has put it, "we may soon be in a position to distinguish organic childhood from functional childhood" (Rogers, 1979).


This is certainly the most familiar marker of childhood. It is widely known that children are physically short relative to the population at large. Indeed, common clinical wisdom suggests that the treatment of the so-called "small child" (or "tot") is particularly difficult. These children are known to exhibit infantile behavior and display a startling lack of insight (Tom and Jerry, 1967).


This aspect of childhood is often the only basis for a clinician's diagnosis. As a result, many otherwise normal adults are misdiagnosed as children and must suffer the unnecessary social stigma of being labelled a "child" by professionals and friends alike.


While many children have IQ's with or even above the norm, almost all will manifest knowledge deficits. Anyone who has known a real child has experienced the frustration of trying to discuss any topic that requires some general knowledge. Children seem to have little knowledge about the world they live in. Politics, art, and science -- children are largely ignorant of these. Perhaps it is because of this ignorance, but the sad fact is that most children have few friends who are not, themselves, children.


This last identifying feature is perhaps the most unexpected. Folk wisdom is supported by empirical observation -- children will rarely eat their vegetables (see Popeye, 1957, for review).

Causes of Childhood

Now that we know what it is, what can we say about the causes of childhood? Recent years have seen a flurry of theory and speculation from a number of perspectives. Some of the most prominent are reviewed below.

Sociological Model

Emile Durkind was perhaps the first to speculate about sociological causes of childhood. He points out two key observations about children: 1) the vast majority of children are unemployed, and 2) children represent one of the least educated segments of our society. In fact, it has been estimated that less than 20% of children have had more than fourth grade education. Clearly, children are an "out-group." Because of their intellectual handicap, children are even denied the right to vote. >From the sociologist's perspective, treatment should be aimed at helping assimilate children into mainstream society. Unfortunately, some victims are so incapacitated by their childhood that they are simply not competent to work. One promising rehabilitation program (Spanky and Alfalfa, 1978) has trained victims of severe childhood to sell lemonade.

Biological Model

The observation that childhood is usually present from birth has led some to speculate on a biological contribution. An early investigation by Flintstone and Jetson (1939) indicated that childhood runs in families. Their survey of over 8,000 American families revealed that over half contained more than one child. Further investigation revealed that even most non-child family members had experienced childhood at some point. Cross-cultural studies (e.g., Mowgli & Din, 1950) indicate that family childhood is even more prevalent in the Far East. For example, in Indian and Chinese families, as many as three out of four family members may have childhood. Impressive evidence of a genetic component of childhood comes from a large-scale twin study by Brady and Partridge (1972). These authors studied over 106 pairs of twins, looking at concordance rates for childhood. Among identical or monozygotic twins, concordance was unusually high (0.92), i.e., when one twin was diagnosed with childhood, the other twin was almost always a child as well.

Psychological Models

A considerable number of psychologically-based theories of the development of childhood exist. They are too numerous to review here. Among the more familiar models are Seligman's "learned childishness" model. According to this model, individuals who are treated like children eventually give up and become children. As a counterpoint to such theories, some experts have claimed that childhood does not really exist. Szasz (1980) has called "childhood" an expedient label. In seeking conformity, we handicap those whom we find unruly or too short to deal with by labelling them "children."

Treatment of Childhood

Efforts to treat childhood are as old as the syndrome itself. Only in modern times, however, have humane and systematic treatment protocols been applied. In part, this increased attention to the problem may be due to the sheer number of individuals suffering from childhood. Government statistics (DHHS) reveal that there are more children alive today than at any time in our history. To paraphrase P.T. Barnum: "There's a child born every minute." The overwhelming number of children has made government intervention inevitable. The nineteenth century saw the institution of what remains the largest single program for the treatment of childhood -- so-called "public schools." Under this colossal program, individuals are placed into treatment groups based on the severity of their condition. For example, those most severely afflicted may be placed in a "kindergarten" program. Patients at this level are typically short, unruly, emotionally immature,and intellectually deficient. Given this type of individual, therapy is essentially one of patient management and of helping the child master basic skills (e.g. finger-painting). Unfortunately, the "school" system has been largely ineffective. Not only is the program a massive tax burden, but it has failed even to slow down the rising incidence of childhood. Faced with this failure and the growing epidemic of childhood, mental health professionals are devoting increasing attention to the treatment of childhood. Given a theoretical framework by Freud's landmark treatises on childhood, child psychiatrists and psychologists claimed great successes in their clinical interventions. By the 1950's, however, the clinicians' optimism had waned. Even after years of costly analysis, many victims remained children. The following case (taken from Gumbie & Poke, 1957) is typical.

Billy J., age 8, was brought to treatment by his parents. Billy's affliction was painfully obvious. He stood only 4'3" high and weighed a scant 70 lbs., despite the fact that he ate voraciously. Billy presented a variety of troubling symptoms. His voice was noticeably high for a man. He displayed legume anorexia, and, according to his parents, often refused to bathe. His intellectual functioning was also below normal -- he had little general knowledge and could barely write a structured sentence. Social skills were also deficient. He often spoke inappropriately and exhibited "whining behaviour." His sexual experience was non-existent. Indeed, Billy considered women "icky." His parents reported that his condition had been present from birth, improving gradually after he was placed in a school at age 5. The diagnosis was "primary childhood." After years of painstaking treatment, Billy improved gradually. At age 11, his height and weight have increased, his social skills are broader, and he is now functional enough to hold down a "paper route."

After years of this kind of frustration, startling new evidence has come to light which suggests that the prognosis in cases of childhood may not be all gloom. A critical review by Fudd (1972) noted that studies of the childhood syndrome tend to lack careful follow-up. Acting on this observation, Moe, Larrie, and Kirly (1974) began a large-scale longitudinal study. These investigators studied two groups. The first group consisted of 34 children currently engaged in a long-term conventional treatment program. The second was a group of 42 children receiving no treatment. All subjects had been diagnosed as children at least 4 years previously, with a mean duration of childhood of 6.4 years. At the end of one year, the results confirmed the clinical wisdom that childhood is a refractory disorder -- virtually all symptoms persisted and the treatment group was only slightly better off than the controls. The results, however, of a careful 10-year follow-up were startling. The investigators (Moe, Larrie, Kirly , & Shemp, 1984) assessed the original cohort on a variety of measures. General knowledge and emotional maturity were assessed with standard measures. Height was assessed by the "metric system" (see Ruler, 1923), and legume appetite by the Vegetable Appetite Test (VAT) designed by Popeye (1968). Moe et al. found that subjects improved uniformly on all measures. Indeed, in most cases, the subjects appeared to be symptom-free. Moe et al. report a spontaneous remission rate of 95%, a finding which is certain to revolutionize the clinical approach to childhood. These recent results suggests that the prognosis for victims of childhood may not be so bad as we have feared. We must not, however, become too complacent. Despite its apparently high spontaneous remission rate, childhood remains one of the most serious and rapidly growing disorders facing mental health professional today. And, beyond the psychological pain it brings, childhood has recently been linked to a number of physical disorders. Twenty years ago, Howdi, Doodi, and Beauzeau (1965) demonstrated a six-fold increased risk of chicken pox, measles, and mumps among children as compared with normal controls. Later, Barby and Kenn (1971) linked childhood to an elevated risk of accidents -- compared with normal adults, victims of childhood were much more likely to scrape their knees, lose their teeth, and fall off their bikes. Clearly, much more research is needed before we can give any real hope to the millions of victims wracked by this insidious disorder.


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