Chapter Fifteen: Can the Chaplain Assist the promotion of Dignity in Care?
Can the Chaplain assist the promotion of Dignity in Care when the provision of healthcare experienced by disabled people can be un-dignifying?
Table of Contents
Table of Contents 1
Figures 3
Acknowledgements 4
Summary. 5
List of Abbreviations 6
Chapter 1: Introduction. 7Chapter 2: Critique and Literature review.. 11
Introduction. 11
Methodological approach. 12
Dignity in Care Research. 14
Understanding Dignity in Care. 19
Understanding Disability. 23
Can the Chaplain Assist?. 25
Conclusion. 26Chapter 3: The Research. 28
Introduction. 28
Research : The Researcher 31
Research : The Questions. 32
Research : The Methodology. 33
Limitations and Researcher bias. 37Chapter 4: Research Analysis 38
Introduction. 38
Theme 1: Participants’ understandings of basic human dignity. 39
Theme 2: Diversity in perceptions of basic requirements of ‘Dignity in Care’ 42
Theme 3: Disabled peoples’ experience of DiC compared to able bodied. 45
Theme 4: Disabled people’s expressions of indignity in healthcare. 49
Theme 5: Chaplains’ affect on Dignity in Care. 53
Theme 6: Emancipatory hopes of group participants. 62
Conclusion. 64Chapter 5: Reflexive and Reflective Analysis 66
Medical Model of Disability. 69
Social Model of Disability. 71
A Community of Characters. 74
The Golden Rule. 76
Can the Chaplain assist the promotion of DiC?. 81
Conclusion. 83Appendix A: Focus Group Participant Information Sheet 100
Appendix B: Research Ethics Committee Approval 102
Appendix C: LTH NHS Trust R&D Approval 104
Appendix D Specimen of Focus Group Transcript and researcher’s workings 106
Acknowledgements
I am grateful for the support and helpful advice of my supervisor, Rev Dr Chris Swift. Not forgetting, Rev Robert Lloyd-Roberts who encouraged me to develop this study. I am also appreciative of Anna Williams who assisted me with electronic searching for journals and proof reading of this text.
To the willing focus group participants – thank-you for being so open and so honest in sharing your experiences and baring your souls. This research is a partnership between us. Truly, I value your story more than the academic outcome of this study. Between us, by speaking out and by being different, we can make a difference.
Finally, thanks-a-million to my family, Jennie, Chloe, Katie and Ellie, who have put up with a lot – I’m back.
Summary
‘Dignity in Care’ is a complex phrase. It came to prominence as a measure of healthcare through the Department of Health’s ‘Dignity Challenge’ (2006). The challenge identified ten factors that high quality healthcare services should have in place in order to respect dignity. This dissertation asks: ‘Can the Chaplain assist the promotion of Dignity in Care when the provision of healthcare experienced by disabled people can be un-dignifying?’
From time to time people with special needs come under the pastoral care of healthcare chaplains. These periods of healthcare provision may or may not be in connection with their disability. A traumatic disabling injury or illness begins with hospitalisation, or advancing Alzheimer’s will result in spells in hospital or long term healthcare, others with disabilities from birth may find themselves hospitalised for medical matters related or unrelated to their disability. This paper is interested in recording peoples lived experience of healthcare and in exploring whether the chaplain can contribute to essential dignity of disabled people.
There is a wide variety of literature on the subjects of Disability and Dignity, both within the social sciences and medical ethics. However, there is little qualitative research material on ways in which disabled people’s dignity in care is maintained or compromised in healthcare and there is no research from a healthcare Chaplaincy perspective. This dissertation attempts to address this absence by including focus group based research that was then analysed into six themes to illustrate participants’ understanding and expectations of dignity in care. The study concludes with an exploration of the chaplain’s contribution to dignity in care which develops into a reflexive and theological analysis.
Chapter 1: Introduction
‘Dignity in care’ (DiC) is a complex phrase. It came to prominence as a measure of healthcare through the Department of Health’s (DoH) November 2006 ‘DiC’ Campaign. Ten features were identified that high quality healthcare services should have in place in order to ensure the dignity of service users. This dissertation asks: ‘Can the Chaplain assist the promotion of DiC when the provision of healthcare experienced by disabled people can be un-dignifying?’
This paper will both reflect theologically and focus on healthcare chaplaincy throughout. The anecdotal reference in this dissertation title to disabled people’s experience of healthcare will be explored by research and reflexive analysis of qualitative research material (Chapters 4 and 5).
Over the last three years the DoH have used the Social Care Institute of Excellence website (SCIE 2006) to clarify their expectations which NHS Trusts and Local Authorities have been encouraged to advance. They acknowledged (on the web site) that dignity is difficult to define with many overlapping aspects, involving ‘respect, privacy, autonomy and self-worth.’
‘DiC,’ according to the DoH, means the kind of care, in any setting, which supports and promotes, and does not undermine, a person’s self-respect regardless of any difference. This dissertation explores perceived understanding of ‘DiC’ through a literature review and research and whether healthcare chaplains can assist the promotion of ‘DiC.’
Initially, the DiC Campaign focussed on older people; since then its scope has widened to ‘children and families, adults and older people including those with mental health issues, physical or learning disabilities’ (CSIP 2008).
This paper responds to the challenge in so far as it relates to people with disabilities. I believe perceived understanding of DiC is blurred. As a chaplain who is disabled, spinally injured following a road traffic accident in 1979, and a Dignity workstream (DigW) member (LTH NHS Trust’s response to the ‘DigCh’) I have some insight on these issues. I will comment and critique on these matters in Chapter 2 through exploration of relevant literature.
The Dignity Challenge
It is commendable that the DoH have raised the issue of DiC and encouraging that LTH NHS Trust is networking and communicating the need to take up the DigCh[1]. This indicates a shift in healthcare from being primarily medicine focussed to being person-centred. The following ten features that high quality care services should have is known as the ‘Dignity Challenge:’
1. A zero tolerance of all forms of abuse.
2. Support people with the same respect you would want for yourself or a member of your family.
3. Treat each person as an individual by offering a personalised service.
4. Enable people to maintain the maximum possible level of independence, choice and control.
5. Listen and support people to express their needs and wants.
6. Respect people’s right to privacy.
7. Ensure people feel able to complain without fear of retribution.
8. Engage with family members and carers as care partners.
9. Assist people to maintain confidence and a positive self-esteem.
10.Act to alleviate people’s loneliness and isolation.
Through the literature review, I discovered a dearth of chaplaincy focussed research material together with an absence of material relating to disabled people’s experience of healthcare. In fact there have been calls, recently, for more chaplaincy-based research, to demonstrate the value and the professionalism of hospital chaplaincy (Swinton and Mowat 2006, Koenig 2008, Mowat 2008, Swift 2009). In this paper I have recorded people’s in vivo understanding of DiC and explored chaplaincy’s effect on it through focus group based qualitative research. This research and themed analysis is presented in Chapters 3 and 4 respectively. This study attempts to address these two research voids.
It is appropriate in healthcare research to test new drugs or equipment by quantitative research. This is the nomothetic, scientific method of gaining knowledge. This approach would not be appropriate in healthcare chaplaincy. When a discipline’s usual outcome to its service is unique and non-replicable it requires qualitative research to gain ‘ideographic’ knowledge (Swinton and Mowat 2006, p.39). The research that forms the basis of this dissertation is qualitative research - a ‘legitimate rigorous and valid form of knowledge that informs us about the world in ways that are publicly significant’ (Ibid, p.38).
Chapter 5 engages in reflexive and reflective analysis on several themes that emerge from the research findings. Models of disability under-gird much of the healthcare comment and the equality and diversity policies in operation in the NHS. Some argue that the Medical and Social models of disability are at opposite ends of the spectrum of understanding impairment and disability. This has a bearing on the healthcare experience of disabled people and warrants further analysis.
The second of the DigChs includes a Christian heuristic, ‘The Golden Rule,’ which is increasingly being challenged through healthcare research and academic comment. It also features in the participants’ responses in my research and I reflect theologically on this in Chapter 5. Some may dispute the positive contribution chaplaincy can make to DiC, this research implies otherwise and I expand on this towards the end of Chapter 5. This leads to a concluding chapter 6.
[1] LTH won the 2008 National Dignity in Care Award for its Dignity in Care campaign.
Chapter 2: Critique and Literature review
Introduction
This critique and literature review has helped me devise an analytical and theoretical framework for interpretation of the research and the development of personal and practical theological reflexivity (Bell 1999, p.91).
In this review I have explained my search methods and search phrases in order to discover journals and published works which have already documented relevant research and argument regarding; (i) dignity in care, (ii) the disabled experience and (iii) the chaplains role in (i) and (ii). The literature reviewed supported and sometimes opposed my premise.
I have emphasised the importance of restricting this review to areas of practical theology and healthcare. In this way I discovered an absence of qualitative research in my chosen topic. Thus, sections on ‘Dignity in Care Research’ and ‘Understanding Dignity in Care’ review relevant research and critique academic medical comment noting the absence of literature on ‘spirituality’ within DiC material. Therefore, I concluded this section with a Theistic understanding of human dignity.
From understanding DiC I give a broad definition of ‘disabled’ for the purpose of this paper and the research herein. This develops into a brief discourse on the arguments regarding grouping the disabled as a metaphysical category. My final review section critiques the crux of the dissertation ‘can the chaplain assist?’
Methodological approach
Material for this literature review was discovered by searching a number of data bases including British Nursing Index, Google scholar, Medline, Omni, BMJ learning, the DoH website, the RCN website and the Disability Press. Cardiff University’s Voyager library catalogue and the university electronic database gave access to Daily Mail (Dignity Campaign), Lancet Interactive, Blackwell, Health Management Information Centre and Social Care Online. Course work and recommended reading have also contributed greatly.
To remain focussed on the dissertation question I used search terms: ‘dignity’ ‘Dignity in care,’ ‘Chaplaincy,’ ‘dignity for the disabled/handicapped,’ ‘handicapism,’ ‘research on dignity,’ ‘research on dignity for the disabled,’ ‘healthcare, dignity and theology,’ ‘disability awareness,’ ‘chaplaincy for the disabled in healthcare,’ ‘spirituality in healthcare’ and other combinations of these phrases.
The research and this literature review sits within the discipline of practical theology and explores issues of ethics and values in healthcare. This is combined with the practical application of what perceived expectation of DiC means in the context of health and illness. There were a number of avenues I was unable to go down for reasons of brevity and to remain focussed on healthcare chaplaincy and practical theology.
The searches uncovered an abundance of literature which crosses into other disciplines such as Philosophy, Ethics and moral thinking, Medical Sociology, Psychology, Disability Studies, and the politics of 'disability' (equal opportunities and human rights issues). Dignity for older people and end of life dignity has an abundance of material. The link between dignity and disability also produced material on mental health patients and dementia in particular. The original idea that led to the dissertation research was a perceived absence of qualitative research or even academic comment on DiC for the disabled with the exception of dementia sufferers who in the majority are older people. The searches proved this perception, revealing a dearth of material on DiC for the disabled.
A wide range of journals assisted the study in addition to published works that have aided the development of the medical, ethical and theological issues in this paper. In view of the volume of material available I have been careful to focus on the specifics of the dissertation question; ‘Can the chaplain assist the promotion of DiC when the provision of healthcare experienced by the disabled can be un-dignifying?’ I have had to be selective in pastoral care material to remain focussed on chaplaincy and the promotion of DiC. Similarly, I have been selective in ethical discourse and moral philosophical debate, focussing on contemporary medical ethics and narrative or social ethics (Hauerwas 1981) in so far as it contributes to the dissertation question.
The dissertation also makes a subjective statement about the DiC experience of the disabled which I will defend through the literature review, the research findings and the reflective analysis that follows.
Dignity in Care Research
UK research on the meaning of and expectations of ‘DiC’ for the disabled is limited. Recent research into patients views and experiences of privacy and dignity, dignity in older age and dignity in nursing give some excellent insights and challenges which can often be applied to DiC for the disabled (Franklin et al. 2006, Woolhead et al. 2004, Calnan et al. 2006).
Goodrich and Cornwell’s 2008 research on ‘the patient experience’ for the Kings Fund speaks of ‘how patients are treated, not in the medical sense but how they are cared for, how they are looked after’ (2008, p.1). In 2001 a Sheffield based study concluded that many healthcare professionals hold stereotypical negative attitudes towards older people many of whom have developmental disabilities such as Dementia (Lothian and Philip 2001). They recommend more research and education within healthcare to maintain DiC. Whitehead and Wheeler, state, ‘although patient privacy and dignity lie at the heart of nursing they are under researched….from the patients point of view’ (2008, p.384). We can add the disabled patients’ perspective to this comment. Swinton and Mowat appeal for more research for all disabled peoples, ‘the voice of the disabled are often excluded from research’ (Swinton and Mowat 2006, p.229). Significantly, disability activists would advocate research being undertaken by the disabled for the disabled, a position supported (though not the exclusivity) by Swinton and Mowat who admit research approaches treat the disabled as ‘objects rather than the subjects of the research process’ (Swinton and Mowat 2006, p.229; Barnes 1992; Oliver 1992).
Unfortunately, the appeals of disability studies proponents have failed to highlight the absence of research for the disabled in healthcare. Although not specifically a comment about healthcare, Shakespeare believes the disability movement has stagnated in the UK since 2000 and calls for a new approach, encouraging research to progress and new alliances to be formed to advance the agenda of disability equality, ‘drawing on qualitative research…in disability studies and medical sociology’ (Shakespeare 2006, p.1). The response to this attack was firstly, to strike at Shakespeare for betraying his roots in the disability movement (Thomas 2008, p.15; Edwards 2008, p.26) coupled with a personal attack on Shakespeare’s right to speak on behalf of the disabled, bringing into question his own disability (Koch 2008, p.19). Secondly, to defend the achievements of the movement through theoretical debate in championing anti-discrimination legislation (DDA[1] 2005) and empirical research led advances in international multi-disciplinary dialogue (Thomas 2008, p.16, Vehmas 2008, p.22).
None-the-less, Shakespeare’s challenge and Swinton and Mowat’s comments highlight the absence of research, especially within healthcare from the disabled perspective (Swinton and Mowat 2006, p.229). The in-journal in-fighting of these scholars fuels the claim that disability studies has become inward looking (Shakespeare 2008, p.11) and highlights the absence of theoretical comment or research within disability activism on DiC. This, despite the facts that, firstly, many people with special needs are in long term healthcare and secondly that disabled people who come into acute healthcare have special needs that need to be addressed. Dignity audits and empirical research should be in place to monitor the quality of, said, DiC.
Perhaps we should ask why research in this field is limited? Is DiC for the disabled a new issue? Disability studies is a relatively new area if taken alongside the comparable movements of feminism, racism or ageism. However disabled scholar and Marxist, Michael Oliver, began writing as a disability activist in the 1970’s. The political debate on disability and equality has been developing since then. Acknowledged, it is not a healthcare specific debate, non-the-less, it is difficult to argue for the neglect of research from the standpoint of disability being a new issue.
Neither do I believe there is a valid argument suggesting there is no special case to be made for disabled people in healthcare. Firstly, the medical model of disability is an indignity to disabled people for a number of reasons that shall be developed later (see Chapter 5, p.69), but stated simply, its tendency is to treat disability or impairment as a problem and an abnormality. It is usually spoken of as a tragedy or a great loss (Marks 2001, p.60). Others disagree with this approach, for example, the Canadian Downs Syndrome Society states, ‘Downs Syndrome is not a disease, disorder, defect or medical condition’ (Koch 2008, p.19; CDSA 2008). Secondly, recent press coverage has highlighted ‘inadequate care and treatment given to the disabled’ (Triggle, 2009). The Health Service Ombudsman said ‘the occurrence of complaints across different agencies leads us to believe that the quality of care in the NHS and social services for people with learning disabilities is at best patchy and at worst an indictment of our society’ (ibid 2009). One only needs to conjecture about the deaf, or blind or a quadriplegics perspective in an acute hospital NHS Trust bed to conclude that there is a need for a disabled specific focus. Add to that a paraplegic’s stories of bedsores and out of reach call buttons, and a case is made for special consideration of people with special needs (see research findings in chapter 3, theme 4(m)).
It is my view that prejudice is so ingrained in society and subliminally reinforced on patient admission to acute hospitals that the needs of the disabled in a healthcare setting are not deemed to be any different to the needs of able bodied residents or patients. Ethicist, Galvin researching the ‘disabled identity’ in Australia and Medic, Kitchen in Ireland call for the development of an ‘emancipatory research model to listen to and respect the voices of disabled people’ (Galvin 2005, p.393) ‘empowering by inclusion signifying ….that disabled co-researchers are valuable and worthwhile’ (Kitchen 2005, p.4). Some disabled researchers would react against the condescending tones of such emancipatory hopes arguing that disability research which is not undertaken by disabled people for disabled people will be based on desires and agendas of the non-disabled (Oliver 1992; Barnes 1992; Barnes and Mercer 1997; Shakespeare 1997; Thomas 2008).
Shakespeare in 1997 would have sat in the disabled activist’s camp but in 2006 he says ‘it is hard to find anyone who espouses the concept’ (Shakespeare 2006, p.18). He calls on disabled researchers to engage with non-disabled researchers ‘in medical sociology, bioethics and other areas of academia’ to ‘provide qualitative research of how disabled people experience barriers (Shakespeare 2006, p.198). He agrees with Van de Ven et al’s research based model of social integration, ‘it takes two to tango’ - the disabled and the non-disabled in society (Van de Ven et al. 2005, p.325). Ryan and Dijkers argue that Van de Ven et al unrealistically promote incorporating disabled people into a non-disabled environment. This is often the case in healthcare expecting the disabled to be able to conform ‘in a particular way which is acceptable to the non-disabled and that the non-disabled will engage with their role’ (Ryan 2006; Dijkers 2006). This confidence is ill founded - ‘what if one can’t dance and the other doesn’t want to (Ryan 2006, p.91)?’ Davis attempts to ‘heighten awareness of iniquities and indignities’ imposed on the disabled (Davis 2005, p.153). She writes about ‘invisible disability’ being rooted in able-bodied people’s ‘unreflective views.’
These comments are gleaned from the fields of Ethics, Disability Politics, Theology and Sociology, however, in the absence of relevant healthcare research, links can be made with my earlier comment on ingrained prejudice. If every member of staff in NHS Trusts were prepared to ‘tango’ with the disabled patients and their carers then the special needs would be accommodated. Swinton’s case study of a person with Downs Syndrome explains this ‘accommodation’ - ‘developmental disabilities in all of their different forms are not problems to be solved, but rather authentic ways of being human that need to be understood and respected’ (Swinton 2001, p.25). Practical theologian Swinton writes about the oppressive nature of Western society and there are poignant echoes for the disabled in healthcare.
Understanding Dignity in Care
Many authors assume a common understanding of dignity whereas it is clear from my research, and others, that the word ‘dignity’ and the term ‘DiC’ have multiple meanings. Canadian, Chochinov (2007) writes in the BMJ on ‘The ABC and D of dignity-conserving-care.’ He calls those in the medical profession to examine their ‘A’ for attitude. If necessary, change their ‘B’ for behaviour, set within a framework of ‘C’ for compassion and ‘D’ for dialogue. However, he fails to define the term DiC, implying a common understanding.
The DoH launched the ‘Dignity Challenge’ in 2006’s saying, ‘our challenge is to put dignity at the heart of care services’ (Ivan Lewis MP, Minister for Care Services). In response the RCN in 2008 launched its ‘Dignity Campaign’ with the strap line ‘Dignity at the heart of everything we do.’ Their 173-word definition of DiC is thorough and all encompassing but it is so wide ranging it is ineffective (RCN 2008). Furthermore, the RCN and DoH approach assumes a ‘one size fits’ all dignity, implying that DiC can be delivered to each people groups without specific attention to the special needs of the disabled, which in itself is an indignity.
The DoH use the SCIE web site to clarify their understanding of DiC, confessing that ‘dignity is difficult to define’ and say it consists of ‘many overlapping aspects, involving respect, privacy, autonomy and self-worth.’ They adopt a standard dictionary definition of dignity as their guideline; ‘a state, quality or manner worthy of esteem or respect; and (by extension) self-respect’ (SCIE 2006). DiC means ‘the kind of care, in any setting, which supports and promotes, and does not undermine, a person’s self-respect regardless of any difference’ (ibid.). However if that ‘difference’ is a disability, is dignity actually undermined because bona fide efforts towards equality overlooks the ‘difference’ of the special needs?
This is illustrated in Figure 1 and the subsequent text. The Venn Diagram represents vulnerable adults in healthcare. The intersection is the overlap of special needs of both older and disabled people. Outside the intersection are needs specific to each grouping.
[1] Disability Discrimination Act
Figure 1 (Omitted): Venn Diagram of Vulnerable Adults in Healthcare
The DigCh is rooted in the DoH’s older peoples focus-group based research and now extends to all vulnerable adults (CSIP 2008). ‘Ten subject areas relating to dignity were highlighted by older people and their carers in the Department of Health online survey carried out in 2006’ (SCIE 2006). The challenge remains focussed on older people. The website, updated in March 2009, still slips into ‘older people’s mode,’ emphasising the marginalisation of the disabled even within healthcare.
Interestingly, the RCN fails to acknowledge that DiC has a spiritual dimension implying an absence in nursing care of spiritual wellbeing within their definition. Nurse Papadopoulos and others, see the absence of the spiritual as indignity; ‘People should be treated with dignity and respect because they have been created in the image of God. This divine dignity gives them fundamental human rights’ (Papadopoulos 2002, p36; Woolhead et al. 2004, p.167; Shamy 2003, Theilicke in Messer 2002). Koenig refers to the absence of the spiritual in healthcare and says ‘bringing spirituality back into medicine may be what we need’ (Koenig 2001). On the other hand, in a landmark vote on 1st July 2009 the British Medical Association pledged NHS commitment to providing spiritual care but voted against medics being given the right to discuss spiritual issues with patients including permission to offer prayer (Keen 2009). Fenton and Mitchell link spirituality with dignity saying, dignity ‘is a state of physical, emotional and spiritual comfort’ (2002, p.20).
Most of the articles reviewed offer similar attempts to cover every aspect of this multi-definitional word. It begs the question how this word became the word to challenge and measure quality of healthcare especially in the UK? In 2001 the Institute of Medicine defined ‘patient centred care,’ with no reference to dignity, as ‘compassion, empathy and responsiveness to needs, values and expressed preferences’ (Goodrich and Cornwell 2008, p.5). In May 2006, Morris, chair of the British Geriatrics Society was promoting ‘decent care for older people’ and sets out to define ‘decent care’ with little reference to ‘DiC’ (Morris J, 2006). Could it be that the phrases’ origins are in spin-doctors and political sound-bites rather than medical doctors and ‘sound-healthcare!’ McSherry agrees, referring to ‘the demise of the essence of care within our healthcare system and the constant need to satisfy the bureaucratic political agenda’ (McSherry 2008, p.13).
The vocabulary in recent DoH publications such as the D’Arzi report, (DoH 2008) show subtle changes in the language of healthcare. Words such as, ‘compassion’ and ‘quality,’ as opposed to ‘goals’ and ‘targets’ are returning to healthcare vocabulary. The timing of the change in the UK Prime Minister (2007) heralded a change in emphasis but also signifies a political reality to the roots of ‘DiC.’ The word itself has chameleon-like qualities and rather unsuitable for the current climate of politicising healthcare through target setting and performance measurement.
In a 2006 Nursing Ethics Journal article, Canadians Franklin et al. explored views on dignity expressed by elderly people in healthcare and highlights the variety in understanding:
“Mairis suggests ‘dignity exists when individuals are capable of having control over their behaviour, their environment and the way in which they are treated by others. Haddock defines dignity as having the possibility of feeling important and valuable in relation to other people. MacIntyre, highlights the relevance and importance of dignity for all those involved in caring situations and emphasises the importance of relationships with regard to dignity. Street broadens the understanding to dignity as being embodied and socially constructed over time, as well as being a subjective, multidimensional, situational and contextual concept.” (2006, p.131).
Others considered in this review add layers to the definition: esteem, trust and integrity (Woolhead et al. 2004); participation and social recognition (Calnan et al. 2006); a human rights approach for people with mental disabilities (Yamin and Rosenthal 2005); ‘worthy’ from the Latin ‘dignus’ (Whitehead and Wheeler 2008); God given ‘alien dignity’ (Messer 2002). The plethora of definitions of dignity shows it to be a subjective, emotive and current topic but ambiguous as a measurement of quality healthcare.
In Judeo-Christian tradition, human dignity derives from the understanding that human beings are made in the image of God… ‘thus men and women possess no small dignity.’ Further more, human beings are ‘created by God and in relationship with God. Human beings are not to be considered simply as selves, but as selves in relation to God’ (Atkinson and Field 1995, p.279). Human dignity is ‘the inherent worth or value of a human person from which no one or nothing may detract’ (Ibid, p.278).
Understanding Disability
In the research that follows, I gave a verbal definition of ‘a disabled person’ to each of the FG members as ‘anyone who would qualify in the UK for a Blue badge or who is registered disabled.’ Giving such a broad definition enables FG participants to answer the questions without having to remember a specific definition of disability. In doing so, I am not suggesting a disabled fraternity exists. Debora Marks and others in Disability Studies support a ‘cross-disability perspective.’ ‘Disabled people are united by shared experience of exclusion and prejudice’ (Marks 2001, p.4). Using the fraternity in this way is an attempt within the disability movement to enlarge the political lobby in pursuit of social and environmental change. In reality this ‘one fraternity’ does not exist. Shakespeare states that the majority of disabled people ‘have no desire to be identified as disabled’ (Shakespeare 2006, p.198). Instead he supports social interaction between disabled and non-disabled people, stating that the ‘roles of solidarity and mutuality are both vital to the flourishing of disabled people’ (Ibid, p.199). I am drawn to this interaction; ‘disability’ is not a metaphysical category as such. The grouping in itself depersonalises and denies ones individuality. ‘Disabled’ is a blanket term for a ‘number of people who have nothing in common except for being not normal’ (Brisenden in Shakespeare 2000, p.23).
The Disability Discrimination Act 1995 defines ‘disability’ as ‘a physical or mental impairment which has a substantial and long term adverse effect on a person’s ability to carry out normal day to day activities’ (Disability Rights Commission 2005). ‘Discrimination’ in this context is ‘the less favourable treatment because of, or for a reason related to, a person’s disability or failure to make reasonable adjustment’ (DRC 2004). When I refer to disabled peoples experience of healthcare as un-dignifying I am implying there is discrimination if reasonable adjustments are not made in acute care or long term care to accommodate special needs whatever they may be. ‘Society should take actions to make functioning in society possible for disabled people in society… arranging appropriate care facilities’ (Van den Ven et al. 2005, p.324).
Thomas and Barnes say these definitions are lacking ‘favouring biological reductionist explanations of disability’ (Thomas 2008, p.15). Barnes defines disability as ‘the loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical and social barriers’ (Barnes in Marks 2001, p79).
In this dissertation I intend to hold these two spectrums of definition in tension, one clearly categorising disability as impairment, the other referring to disabling barriers in society. For the purpose of legislation definitions are essential but in other ways the definitions advocate labelling which leads to ‘exclusion from spheres of social life’ (Brisenden in Shakespeare 2000, p.23). If society were organised on more equal basis, many of the physical problems would disappear.
Can the Chaplain Assist?
‘Literature does not sufficiently examine whether and how the provision of pastoral care services to hospitalised patients contributes to the helpful relationship of religion to health, illness and mortality’ (Bay et al. 2008, p.65). None-the-less, as fellow healthcare professionals, physicians should have the same confidence in referring their patients to chaplains as to any other Allied Health Professional (AHP) (Steer and Lee 2004, p.4856). In reality physicians are reticent to refer patients to chaplaincy[1]. Does this imply a negative answer to our question, ‘can the chaplain assist?’
As researcher, I am inclined to respond in the affirmative but there must be discussion of a negative undercurrent to our question. Gilliat-Ray suggests a professionalisation in nursing is ‘reclaiming spirituality from clergy’ (2003, p.343) which if true could reduce nursing referrals to chaplaincy. Against this the BMA voted in July 2009 for ‘leaving spirituality to the professionals.’ Nurse and academic, John Paley disregards the spiritual altogether, ‘most UK people are not particularly bothered about matters spiritual’ (Paley 2007, p.4). Recently the National Secular Society suggested that ‘hospital Chaplains are not on most people’s list of essential services in a healthcare setting’ (Ashworth 2009). Clearly, the value of healthcare chaplaincy is contested. Contrary to this, the research question in Chapter 3, which provides empirical evidence in response to this issue, gives a measured affirmative statistical answer.
Conclusion
In conclusion, this literature review and critique comments, briefly, from the disabled perspective, on the traditional view of disability known as the medical model and on the social model which is one response to the traditional model. We will return to the medical and social models for further reflection in Chapter 5.
I have attempted to critique the use of the ‘multi-definitional’ word ‘dignity’ to measure quality of healthcare. There are grounds to conclude it is a political development rather than a progression within medical terminology.
I have considered literature that helps us respond to the question ‘can the chaplain assist?’ Literature reviewed stresses the importance of efficacy in the light of financial constraints in the NHS and secular opposition to chaplaincy. More research is necessary if chaplains are to make a credible show of evidence of value added to the overall quality of care provided by the NHS. The research that follows is a small step along the long road in responding to that challenge. My research shows an encouraging positive response to the question ‘can the chaplain assist?’
Finally, it is my intention to reflect theologically throughout the reflexive analysis in chapter 5. As an Anglican healthcare chaplain I will inevitably portray a Christian theological standpoint. The Bible shapes my theological understanding, adding a biblical metanarrative to the context (Lyall 2001, p.46). I do not purport to speak for other faith perspectives but I believe I have considered the secular standpoint to some extent. I have attempted to remain critical in my research and balanced in my critique and analysis.
[1] 2% of LTH Chaplaincy Referrals came from doctors in 2008(
Source: LTH Electronic referrals system.
Chapter 3: The Research
Introduction
Evidence based practice is increasingly a norm in the NHS. Qualitative research must be undertaken by or on behalf of chaplaincy to provide an evidence base if chaplaincy wishes to be recognised and respected as healthcare professionals rather than gifted intuitive religious amateurs (Mowat, 2008, p.14). It is not enough for chaplains to be self-assured that their pastoral work in the context of trauma and ill health is an indispensable aspect of DiC. Nor can chaplaincy rest-assured that the NHS will continue to need and value our spiritual discipline within its multi-disciplinary team (Swift 2009, p.168). Research should form part of chaplaincy’s response to the changing nature of the NHS. From simply being free at the point of delivery healthcare, Mowat states that the NHS has now a bigger picture of ‘investment, resource allocation, professional practice, professional power, measurable outcomes and patient voice and votes’ (Mowat 2008, p.11; McSherry 2008, p.13). By asking this dissertation question and by creatively engaging in qualitative research and attempting to be thorough in the approach, the outcomes of this work can add to the evidence base that chaplains can contribute to the promotion of DiC.
This applied research study utilised five separate Focus Groups (FG) in five different settings to explore the proposition that DiC is more than a basic human right. As a Christian healthcare chaplain, I believe the incalculable worth of a human life stems from our creation and redemption by God. Every person’s dignity should be a ‘given’ because our ‘personhood’ is given by God for time and eternity. Swinton explains that threats to disabled people’s dignity are ways in which people are ‘conceptualised, stigmatised, alienated and caricatured …robbing them of their essential human dignity and freedom …often excluding them from meaningful participation within society.’ (Swinton 2000, pg.18). Hospitalisation can be an un-dignifying experience for people with disabilities in a number of ways. For example, some aspects of healthcare provision deny the elderly DiC at the end of life and others imply dementia progresses to a loss of personhood. Still others ostracise people with learning difficulties by denying them self-advocacy. Furthermore, the dignity of people with physical disabilities is compromised by a number of factors such as: attitude, environment, medical ethics and the traditional models of approach to illness.
Improving patients’ experience is central to ‘High Quality Care for All’ (D’Arzi and DoH 2008) whilst respect and dignity, compassion and working together for patients are said to be under-girding values of the NHS (Goodrich and Cornwell 2008, p.1). The purpose of this study was to explore the lived experience of DiC of different themed people groups. The research questions then led the groups towards the spiritual by asking ‘can healthcare chaplains assist the promotion of DiC of the disabled?’
The research was based on five FG discussions:
Focus group 1 A Christian Alpha group
Focus group 2 A self-advocacy group with special learning needs
Focus group 3 A group of older people
Focus group 4 A group of disabled adults, members of SIA
Focus group 5 A group of healthcare professionals, the DigW
From the outset I realised the groups were more complex than simply disabled and non-disabled and could be further categorised as an able boded group with no healthcare connections, a group with permanent handicaps mostly from birth, a group of transitory disabled, acquired by natural ageing, a group transitory disabled through traumatic accident or illness, and finally, a group of able bodied, healthcare professionals.
The particular method chosen for this study was FG discussion, recorded and transcribed, coded and analysed by constant comparison. This is a recognised valuable qualitative research method enabling the specific topics to be explored by recording individuals’ views and experiences through the group interaction (Litosseliti 2003, p.1). The questions were carefully chosen to ensure the group discussion developed such that the dissertation question, ‘Can the chaplain assist…’ could be answered from the perceptions, ideas and comments raised. Krueger et al. argue in favour of this method as carefully planned discussion designed to obtain perceptions on a defined area of interest in a permissive, non-threatening environment (Krueger and Casey 2000, p.9).’
From these five FGs we gain valuable insights into participants’ views on the topic and I believe it is valid to hypothesise using these individuals’ experiences, feelings and arguments. In particular, it is a useful methodology for obtaining information from people with special needs for example illiterate educational needs where written questionnaires would discriminate and one to one interviews would be more threatening. In addition, I have emancipatory hopes that the generalisations from the study will challenge existing understandings of dignity and specifically, ‘DiC.’
From the analysis of the transcripts, a number of key themes emerged. This paper will explore these themes (Chapter 4) together with theological issues raised in connection with the chaplains’ role in DiC (Chapter 5).
Research : The Researcher
The flowchart in Figure 3 (page 36) illustrates that the researcher developed the research questions and selected key gatekeepers to assist with selecting FG participants. I applied for R&D and Local Research Ethics Committee (LREC) approval, booked venues, moderated and recorded FG sessions. I then transcribed the recordings verbatim and codified and analysed the raw data. There are valid reasons why the ‘one-researcher-does-all’ model works for this study. As a healthcare chaplain who is also physically handicapped and a member of a NHS Dignity Workstream, I believe I am well equipped to lead on this research. In addition, there are administrative benefits from moderating, recording and transcribing the FG materials. The moderator is able to keep the research on track, knowing the intentions underlying the individual questions and knowing the overarching question being asked in the dissertation. In addition, being present in the discussions the researcher can observe non-verbal group interactions. Furthermore qualitative research in a previously under-researched area is manageable on a low budget.
Research : The Questions
The Primary research question is: What is the effect of Healthcare on the Dignity of disabled people? The Subsidiary question is: How can chaplaincy affect issues relating to ‘dignity-in-care’ of the disabled? These questions are explored through a series of questions answered by discursive interaction. Questions were intended to be clear, non-academic, one dimensional, short and easy to say. Questions were non-leading and neutral to minimise bias.
The question ‘route’ was developed using the ‘funnel’ approach, progressing from the general to the specific (Litosseliti 2003, pp.55-58, Krueger 2000, p.43).
Questions were intended to guide the groups through interactive stages as described by Tuckman (in Litosseliti 2003, p.72).
Forming Stage: FG members invited to introduce themselves.
Storming Stage: First general questions about topic – to generate discussion.
Norming Stage: Moving towards specific dissertation question being asked.
Performing stage: Chaplaincy and the spiritual introduced, group identity develops, trust, interdependence, flexibility, feelings shown.
Adjourning Stage: Helping group members disengage from topic and group.
The FGs were carried out in line with general principles of phenomenological interviewing. After an introductory welcome and broad definition of disability[1] the researcher asked the forming question and then posed the first ‘storming’ questions focussing on the dissertation question.
[1] Broad definition of disabled person, anyone who would qualify for a ‘Blue Badge’ in the UK or who is registered Disabled.
I have inverted the question ‘funnel’ suggested by Tuckman (Figure 2) to show the question route intended to generate relaxed in-depth, discussion in a non-threatening FG environment. By progressing through the ‘stages’ there was a sense of FG ‘widening’ or flourishing towards the performing stage
Research : The Methodology
Swinton and Mowat challenge researchers to acknowledge the power dynamics within the research process and the complexities between researcher and participants. When researching with the disabled, they stress the importance of including the participants at each stage (Swinton and Mowat 2006, p.227). ‘Participatory research provides a framework whereby the objects of research become subjects and co-researchers’ (ibid p.228). Swinton and Powrie’s 2004 study (ibid p.228) involving, people with learning difficulties, used this research method and I assumed this approach in my research. Through providing a FG platform for discussion I believe I empower and make audible the voice of disabled people.
The research cohort was made up of 5 different themed focus groups. Gender, religion and cultural background were not identifying notes. FG1 was made up of people who had attended a Christian Alpha course and therefore had some interest in Christianity. A link person (gatekeeper) known to the researcher approached potential participants, offered the invitation and provided relevant information supplied by the researcher about the study.
Permission was granted by one of the LRECs and the local NHS Trust R & D department [Appendices B and C]. Ethical concerns were raised about use of participants names on transcripts and also about security procedures for recorded sessions. Further questions were asked about disabled persons’ capacity to consent to participate. Assurances were subsequently given. ‘Ethical issues [are] of particular importance, bearing in mind the possibility of inadvertent abuse of a vulnerable population’ (Swinton and Mowat 2008, p.241).
Each FG session was recorded on a digital recorder and full texts were transcribed in five separate word documents. Texts were then exported to five spreadsheets where each comment could be numbered and coded to denote original FG, retaining connection to the original question posed.
The researcher then immersed himself in the texts transcribed, creating another transcription of the five FGs responses to each question, i.e. reordered in question order for cross referencing and group comparison. From this ‘immersion’ certain themes emerged that shed light on the primary and secondary dissertation questions on DiC and the chaplains contribution. Chapter 4 develops the issues and key themes that emerge. After the researchers soaking up the texts and interrogating the full transcript, relevant extracts were extrapolated and quoted in Chapter 4 to illustrate participants’ understandings, feelings and expressions.
Limitations and Researcher bias
One criticism of this research is the number of participants. In defence, funded research respondents are often smaller than this. Goodrich and Cornwell (2008) interviewed 20 people for ‘seeing the person in the patient,’ and Whitehead and Wheeler (2008) circulated 40 questionnaires on dignity and privacy while McColl et al. (2000) interviewed 16 disabled people about their spiritual beliefs after traumatic disability. This study offers qualitative data in barren field from approximately fifty people across five FGs.
The fact that the moderator is physically handicapped could be seen as a limitation. This may have influenced FGs freedom of discussion. In response to this, disabled activists criticise the traditional medical practice of research developed by non-disabled people without disabled participants.
The personality of the moderator and the obvious Christian role may also influence FG members. There is also a valid argument that the FG environment may seem to be an unnatural means of discussing the topic.
Furthermore, there were no financial resources to research over and above researcher-led FGs and personal study time. Without relevant funding there is no opportunity to reflect, review and develop the subject at a later date.
Chapter 4: Research Analysis
Introduction
One of the tasks of research analysis is to close the gap between the remoteness of the reader and the richness of the data (Morgan 1997, p.64). As researcher and moderator of the focus groups I was aware there were many important ‘nuggets’ of experience shared. This analysis identifies and emphasises several themes that report both FG flourishing and personal verbatim contributions. The FG discussions created a rich description of participants understandings of DiC, their own lived experiences of healthcare together with their views of a chaplains potential to contribute to enhancing or denying dignity of disabled people in healthcare.
From the analysis of the transcripts a number of key themes emerge:
[1] Variety in participants understanding of basic human dignity
[2] Diversity in perception of basic requirements of ‘dignity-in-care’
[3] Disabled peoples’ experience of DiC compared to able-bodied people
[4] Disabled peoples’ expressions of indignity in healthcare
[5] Chaplains’ affect on ‘dignity-in-care’
[6] Emancipatory hopes of group participants
The interpretation that follows combines descriptive counting with qualitative analysis of categories which became evident from subsequent analysis of the data (Morgan 1997, p.61).
Theme 1: Participants’ understandings of basic human dignity
Chapter 2 explained that the plethora of definitions of dignity shows it to be a subjective, emotive and current topic which is affected by our personal histories and our sociocultural environment. SCIE define dignity as ‘a state, quality or manner worthy of esteem or respect.’ (2006). The FGs in this research came up with an equally wide variety of answers to the ‘storming’ question “what do you understand by dignity?”
The following pie chart shows participants’ answers:
Respect & self-worth 34%, Non-patronising good communication 28%, Personhood 18%, Human rights & equality 10%, other 10%
Figure 4: Participants understanding of dignity
Concurring with SCIE’s concentration on respect and self respect (above), 34% of all FG comments referred in some manner to ‘respect.’
The prominence of ‘patronising and condescending’ attitudes is a clear reflection on the different shades of disability within the cohort. People, ‘talking at you…not to you….talking down to you, taking away dignity’ (24.2)[1]. ‘Some people will talk to your support worker… and not you,’ (27.2) building on the previous comment, another member of FG2 added, ‘In this day and age that shouldn’t happen, should it’ (28.2)?
There is an absence of ‘affirming personhood’ in SCIE’s guideline definition ‘a state, quality or manner worthy of esteem or respect,’ (2006) whereas a surprisingly high percentage of FG respondents (18%) mentioned the importance of personhood.
Dignity is ‘treating people, regardless of their age and capabilities as if they are totally a person….’ (13.3).
Dignity is ‘being treated as an individual and your rights and opinions are respected’ (16.4).
Dignity is about being spoken to and heard …at the end of the day they are people...[who][2] should be treated how you want to be treated’ (23.4).
This concurs with the findings of Cornwell and Goodrich’s research. Interviewing ten patients and relatives to explore quality of care, they reported; ‘all the patients and relatives talked about the importance of the patient being ‘seen as a person’’ (Cornwell and Goodrich 2008, p.9).
There is also an absence of comment on ‘the spiritual’ in both SCIE’s understanding of dignity and in this study. From a chaplains’ perspective this could imply a negative response to the research question; ‘Can the chaplain assist the promotion of DiC?’ There appears to be no connection in respondents understanding between dignity and the spiritual.
Theme 2: Diversity in perceptions of basic requirements of ‘Dignity in Care’
‘DiC,’ according to the DoH, means ‘the kind of care, in any setting, which supports and promotes, and does not undermine, a person’s self-respect regardless of any difference’ (SCIE 2006). How do our FG members’ perceptions compare with the ‘DigCh’ - ‘factors which high quality services should have in place in order to respect the dignity of service users?’
[1] The format for focus group references is as follows: Participant .Focus Group e.g. 24.2 is Participant 24 Focus Group 2.
[2] Words in square bracket added for clarity.
This research enables comments of the participants to be brought alongside the original ten features of the DigCh (see p. 8-9). I had hoped there would be significant correlation between the DigCh and this study. In fact direct comparison was unremarkable.
1.Good Staff/Patient communication (prompt responding, non patronising, clarity) 27%
2. Privacy in Toileting & cleanliness 19%
3. Privacy in confidentiality 11%
4. Single gender wards 9%
5. Safety/security 7%
6. Respect 7%
7. End of life care 7%
8. Scarcity of resources 5%
9. Visitors per bed 5%
10. Cultural issues 3%
The findings of this study concur with other research, that individuals have a wide range of understanding of the meaning of DiC (Whitehead and Wheeler 2008; Malcolm 2005).
There is a noticeable absence of any mention in the DigCh of maintaining community or enabling cultural differences. This is surprising in today’s multi-cultural society. Even more so when the DoH’s Patient Charter in 1991 gives its’ first aspiration as - ‘respect for privacy, dignity and religious and cultural beliefs’ (Goodrich and Cornwell 2008).
In our research communal and cultural issues did arise:
‘Food has different meanings for different people, it’s more than food for some faiths’ (64.3).
‘When I was in, we had steamed fish every Friday’ (66.3).
‘I don’t intend this to be racist [but] 10 people descend [on the ward], which can happen with the Asian community’ (64.1).
‘Bearing in mind cultural and ethnic background … if somebody is from a very different culture...you need to try and understand and ask questions about their own beliefs’ (21.5).
Theme 3: Disabled peoples’ experience of DiC compared to able bodied
The FG discussion moved from the ‘Storming’ stage to the ‘Norming’ stage by asking, ‘what is the effect of healthcare on disabled people’s dignity?’ At this stage it is important to ask how did each group respond to the dignity and DiC questions, what assumptions did they make in answering, what linguistic resources did they use and what arguments did they pose?
To the general question about dignity (Q1) the non-disabled, non-healthcare group (FG1) assumed the question applied to others ‘I think it’s a question of treating people with respect’ (28.1). There was a vagueness about some of the answers, ‘respect for each other, for how we all differ…regardless of how that may be’ (16.1) and ‘a way of living which gives an appropriate response to various situations in relation to your value system’ (17.1). The able-bodied healthcare professionals (FG5) reflected this pattern of generalising by applying the question to others but purposively developed the question to being about healthcare and applying it to ‘me.’ ‘I think ‘respect’, treating people as an ‘individual’’ (18.5). ‘For me personally, it means enabling me to do as much for myself as I could…’ (23.5). The implication being that the non-medics (FG1) were answering the question theoretically whereas the professionals theorised and then imagined themselves in the patients shoes. This idea is supported by Goodrich and Cornwell’s 2008 study; ‘staff want to work in organisations that treat patients as they would want members of their family to be treated (DoH 2007b).’ There are theological echoes to Christ’s Golden Rule from the Sermon on the Mount[1] (this is developed further in Chapter 5).’
FG3, the older people’s group, also combined the theoretical with the lived experience. This is unsurprising, 50% of this group’s participants had nursing or social work training. This gave the respondents an air of authority in comparing past and present as they expressed frustration that healthcare seemed to have regressed rather than progressed from former healthcare times. ‘Nursing in the 1940’s was very different to 2008…I’m afraid this day and age people are often treated like a number’ (24.3).
FG4, the transient disabled (through acute trauma) spoke first hand about discrimination generally and in healthcare. As the discussion ensued, deeply personal feelings were openly and factually expressed, emphasising the pain of dignity denied. Notice the reaction to being objectified as ‘disabled:’
‘Dignity is about treating you as a person. One thing I hate is being referred to as a wheelchair… actually ‘it’ is not a wheelchair, ‘it’ is a person!’(41.4).
‘You get missed out, people talk round you… you are not in the loop and you feel not in it’ (22.4).
Similarly FG2, were inclined to answer the general dignity question from a healthcare perspective and with a personal application of mental handicap; ‘does people patronising you come into it?’ (22.2) the first respondent asked. ‘They will talk to your care worker and not you’ (27.2). This may indicate that the disabled groups respond within society as people who experience discrimination first hand. A care worker in FG2 contributed, ‘Dignity is always to treat everyone with respect’ and another participant retorted ‘But you don’t always get that do you?’ (48.2; 49.2).
Focus Groups 2 and 4 also expressed an empathy with other disadvantaged groups. ‘It isn’t just disabled people that don’t have dignity, it’s also them who are homeless’ (55.2 c.f. 42.4; 59.2; 23.4). Thus recognising the utilitarian societal marginalisation of some as opposed to equality of all.
Furthermore, as FG2 and FG4 spoke with first hand healthcare experience the discussion seemed to have a therapeutic effect, enabling the burdens of past hurts to be shared.
‘You had that with doctors, didn’t you Rachel’ (25.2).
‘Yes, I went to the doctors and he didn’t believe me …… that I was disabled.’ [participant Rachel cries] (26.2 cf 165.2).
Participant Rose said ‘I had injections and it was painful, I don’t like injections, they make a hole in your arm’ (177.2, 179.2).
‘What was it for Rose?’ asked another.
‘To make a hole… they stick it in there [indicates] forcing it…to get blood out. It’s painful. I didn’t understand. I was crying, frightened’ (181.2; 185.2).
Another participant, understanding the medics inadequate explanation in Rose’s comments said, ‘I always go with…somebody that can find out what they are saying and explain it to me simple’ (189.2).
Similarly FG4, spinally injured adults were able to share first hand experiences. This group deliberately tried to balance positive comments with the negative. Open discussion flowed, sensing the therapy within the FG and remembering the healing powers of camaraderie on the hospital wards.
‘Everybody saw everybody else’s bits, it was demeaning and un-dignifying, you’re just like a lump of meat’ (47.4).
‘Sometimes your dignity had been taken away from you by the way you were treated or not respected…other times you felt your dignity had been maintained’ (79.4).
‘When you’re paralysed and just laying in your head brace….people coming and saying hello….meant a lot to you’ (146.4).
‘He did it [art] for me as much as himself cause he saw how much happiness I got out of sticking a paintbrush in his mouth’ (136.4).
This group with longer term experience of healthcare, expressed their appreciation of the care they received while remaining critical of incidents where their DiC had been compromised. FG4 also showed a deeper awareness of the importance of community than the other groups. One participant asked ‘How do you think that would be affected by a 4 bed ward or single room?’ (141.4), ‘You’re losing community’ another replied (142.4). This theme is further analysed in Chapter 5 - ‘a community of characters.’
[1] Matthew 7 v 12 ….‘in everything do to others as you would have them do to you.’
Theme 4: Disabled people’s expressions of indignity in healthcare
The dissertation question states; ‘the provision of healthcare experienced by the disabled can be un-dignifying.’ Do the findings of the research support this premise and are there grounds for suggesting a disabled persons experience of healthcare is any more undignified than others?
Looking at words and phrases used by the disabled people in these focus groups and by linguistic analysis of their healthcare experiences we can deduce ways in which their healthcare experiences were un-dignifying at best and discriminatory at worst as expressed by specific disabled FG members.
This quick fire selection of comments emphasise the importance of the DoH’s DigCh (see page 8). The table indicates breaches of DigCh qualities 1,2,3,4 5,6,8,9 and 10 as expressed by participants who were disabled or who had family with developmental disabilities.
Disabled peoples’ description of negative healthcare experience
a. Patronising (22.2),
b. Talking at you not too you (24.2),
c. Talking to the care worker and not the patient (27.2),
d. Decisions made about the disabled person and missing the person out (19.4),
e. Breaching confidentiality (knowing the disabled person does not understand) (121.2),
f. Not explaining (185.2, 130.2) - ‘doctors think that person doesn’t understand so they don’t bother,’
g. Not respecting the fact that you know what you are talking about (if you have been disabled for a long time) (61.4)
e.g. teaching a paraplegic of 34 years how to transfer (67.4),
h. General wards not phoning specialist units (e.g. spinal) for help and expertise (64.4) e.g. re: disreflexya. Not turning at the correct intervals for prevention of pressure sores (81.4),
i. Not allowing a degree of control in personal care (74.4, 79.4) and denying independence e.g. helping too much (46.5),
j. Relocating/moving people with dementia without adequate pastoral support e.g. family present (90.1),
k. Commanding people with dementia (bullying) - ‘lets have you to the bathroom or sit over there’ (85.1),
l. Medics not understanding what is ‘normal’ for that person e.g. rocking, shaking, repetitive (143.2)
m. Placing drinks, jugs, bells out of reach (86.4, 87.4), tidying up without thinking of where things should be placed (81.4),
n. Regimentation and rules preventing socialising on the wards (92.4),
o. Not bending down or lowering to speak to the disabled (119.1),
p. Nakedness revealed without curtains being pulled – ‘it’s a mixed ward and everybody saw everybody else’s bits, it was demeaning and un-dignifying, you’re just like a lump of meat’ (47.4).
The disabled people’s vocabulary was more graphic, specifying abuse or discrimination, while the negative comments of able-bodied participants indicates inconvenience and nuisance of hospitalisation rather than forms of abuse. For example, some spoke of noise on the wards (119.3; 120.3; 121.3; 125.3) (c.f. 113.3; 104.1; 108.1).
An interesting comparison to the sixteen expressions of un-dignifying experience by disabled focus group participants is Kitwood’s research into dementia which identified seventeen dignity-denying elements in healthcare.
1.Treachery (forms of deception).
2.Disempowerment (not allowing use of their abilities).
3.Infantilisation (Patronising).
4. Intimidation (inducing fear through threats etc…)
5.Labelling (words which devalue the person).
6.Stigmatisation: (treating as if diseased or outcast)
7.Outpacing (providing information or making choices too fast for the disabled person to understand).
8.Invalidation (failing to acknowledge the subjective reality of a persons experience, especially feelings).
9.Banishment (excluding or sending away).
10.Objectification (treating person as if an object – pushed, lifted).
11.Ignoring
12.Imposition (forcing or denying to do something).
13.Withholding (refusing to meet a need or give attention).
14.Accusation (blaming for things that arise due to lack of ability).
15.Disruption (intruding or breaking their frame of reference).
16.Mockery.
17.Disparagement (telling person they are useless, worthless or incompetent).
Kitwood’s response was to push for a ‘person centred paradigm’ (2005, p.54), which is now a widely accepted yardstick in healthcare. Swinton refers to this as ‘liberation as a force of rehumanization’ (Swinton 2000, p.23).
I am not suggesting that the able-bodied persons’ negative experiences of DiC are insignificant. Rather, the language and graphic clarity of the disabled participants gives insight that some of their healthcare experiences were un-dignifying.
Theme 5: Chaplains’ affect on Dignity in Care
We observed earlier the absence of ‘the spiritual’ in people’s understanding of dignity and I suggested it would be erroneous to conclude that there may be a negative response to our dissertation question ‘Can the chaplain assist the promotion of DiC for disabled people?’ This study shows participants negativity was not directed at chaplaincy but at the Church or at faith healers.
When the groups were led to the ‘Performing Stage’ questions, the groups were relaxed and eager to comment on ways in which Chaplaincy could affect a person’s DiC. The question was asked in two stages and was deliberately neutral to invite negative and positive responses. Firstly, ‘how chaplains could affect ‘DiC’’ and secondly, ‘Can you think of ways in which a Chaplain could affect ‘DiC’ of disabled people?’
On a simple statistical count there were a total of 85 comments made in response to the first general question. Of these there were 41 positive comments (48%), 25 negative (29%) and 19 neutral comments (22%). Thus 62% of all non-neutral answers to the first question were affirmative.[1]
[1] The percentage is of the total negative and positive comments (66). A further 19 replies were deemed to be neutral or non-answers to the question.
Figure 6: Positive and negative responses to the question: ‘Can the chaplain affect Dignity in Care?’
This response is supported by overseas research data that indicates a heightened spiritual awareness following disabling accidents or degenerative disabilities (Kohls et al. 2009; McColl et al. 2009).
Our analysis coded negative and positive responses to the question and I will refer to these in turn. Interestingly the significant negative comments in response to the question came from the three disabled peoples FGs 2, 3 and 4.
FG2 (self-advocacy group) had difficulty in relating chaplaincy to DiC. Their first negative response was about truth telling and may have been directed at the medics….‘They kept telling my mum she’d get better....but she just wanted to know the truth and in the end she died’ (201.2).
The older people’s group are obviously of an era when religion and therefore chaplaincy would be a part of every day life. Their negative comment thus bemoaned absence of chaplaincy. ‘I was in hospital for a fortnight and I didn’t see sight nor sound of a chaplain the whole time’ (149.3).
Within the FG of spinally injured people, the ‘performing question’ lived up to its title! They did not hold back from negative comment, often drawing the facilitator into the frame. It was as if the moderator was seen as a mediator between the Church and this disabled group. Most of the negative comments indicated past hurts such as environmental (e.g. access) and linguistic abuse (e.g. ‘foot-in-mouth’). Interestingly these negative comments were not directed at chaplaincy but expressing disenchantment with the wider Church. This could be evidence of increasing secularisation in society or a societal move towards a spirituality that evades religious authority and this is personified in the Church.
‘I think the churches are the worst for accessibility’(124.4).
‘Yea, stop asking your congregation to stand up to sing…they all stand up and all the eyes come to me’ (98.4).
‘My parents took me as a child to the faith healer… a very negative experience for me because I can remember thinking, ‘ what’s wrong with me…what right have you to make me different to how I am?’ The spiritual thing is something I remember as being negative’ (202.4).
As the group began to focus on healthcare, bona fide chaplaincy specific negative comments were offered. The linguistic style tended to be instructive to chaplaincy in general and spoken with the authority of a wealth of experience gained from months of hospitalisation and trauma survival.
‘Don’t assume everyone wants to talk to you [the chaplain].. I used to pretend to be asleep when I saw your lot coming round. Oh G*d I dreaded it’ (104.4).
‘If you’re not a believer, they’ll [chaplains] come and speak to you… the service needs to be there but I think privacy is important’ (110.4).
‘When you have an accident, you’re all over the place, you go through all kinds of feelings and you don’t want to talk to the man of God’ (126.4).
‘You [chaplains] can give too much information in the early days and they [the patient] will reject you’ (127.4).
The negative comments directed at chaplaincy were obviously intended to assist the furtherance of chaplaincy, warning against intrusion, whereas the negative comments directed at the Church depicted past hurts and incidents of discrimination.
Turning to the positive responses to the ‘performing question’- ‘Ways in which the chaplain can affect DiC of disabled.’ When the performing question was asked regarding the disabled, 90% of the 31 responses were positive (excluding neutral and non-answers) i.e. only 3 negative comments were offered.
The data highlighted 15 ways in which participants thought the chaplain could positively affect DiC in general, these were:
· Chaplains offer compassion, ‘a lot of it has to do with touching.’ (128.1)
· Chaplains are careful with how far to go with the spiritual. (132.1)
· Chaplains with the ‘right rapport… who you can connect with and who can help.’ (139.1)
· Conducting funeral services, being there ‘the whole way through’ [the trauma]. The chaplain ‘touched all of us, she left something with everybody…absolutely superb, you could feel it.’ (151.1)
· Support to family e.g. family member with dementia, ‘the community around him and that gave 2 hours [of respite].’ (153.1)
· Quality time with the minister because they are able to visit out of hours. (193.2)
· Just being around is a support, ‘being in hospital can shake you up.’ (194.2)
· Chaplains are non-judgemental especially if people are not religious. (211.2)
· ‘My dignity was greatly affected by having the laying on of hands and anointing with oil.’ (142.3)
· Chaplaincy volunteers visiting on the wards, ‘they had little cards to give out.’ (143.3)
· Generic pastoral visiting to everyone on the ward. (145.3)
· Holy Communion at the bedside, ‘that is a way in which the chaplain gives dignity to the Christian, providing for their spiritual needs.’ (158.3)
· Baptisms in hospital, ‘I felt it was confirming her as a person and the whole thing was very dignified.’ (162.3)
· Being able to speak with a chaplain of another denomination ‘she thought it [the stroke] was a punishment and wanted to talk it through with the chaplain who was not’[of her denomination]. (134.5)
· Large chaplaincy team provides a ‘good representation’ of different faith groups. (105.5)
These are some of the positive replies which were generally stated as ways in which chaplaincy can promote ‘DiC’ for all.
Turning now to ways in which participants thought the chaplain could positively affect DiC of the disabled:
· Laying on hands and prayer for healing (214.2)
· Simply talking, because chaplains are separate from family, a spiritual stranger. (224.2)
· Simply visiting people and speaking to them. (239.2)
· Praying for people. (226.2)
· Ensuring special needs are noticed and met. (228.2)
· Listening (especially to people with learning difficulties). (231.2)
· Chaplains help by their personality. ‘Somebody willing to pray, thinking about you whether you are a believer or not.’ (190.4)
· Conveying messages from the community or the local church that ‘they are thinking about you. Giving feedback, ‘somebody was bothered.’ (192.4)
· Helping with trip to Lourdes. (200.4)
· Chaplaincy is aware of how to treat people with dignity. (105.5)
· Skilled counselling. (107.5)
· Disabled chaplain providing insights into trauma, (117.5) empathising with what patients are going through. (118.5)
· Chaplains able to signpost - linking patients with support groups and other staff in the organisation. (121.5)
· Patients might speak to chaplain on a different level to the medics. (122.5)
· Patients using the chaplaincy volunteers and chaplains ‘simply an ear to talk over their problems with or a general chat.’ (127.5)
· Somebody to talk to when you are lonely, improves ‘your dignity and your feelings about yourself.’ (129.5)
· Patients respect the chaplains’ role. (130.5)
· An outlet for anger, ‘sometimes people need to let off steam and …you could cope with that even if it was to shout at you.’ (131.5)
In total there are 18 different roles the chaplain could fulfil as their positive contribution to disabled peoples essential DiC - a combined total of 33 aspects of pastoral and spiritual care. It is not possible to comment on each of the 33 ways in which chaplains can assist but two of the comments require further analysis.
One respondent spoke about ‘touching’ and chaplains have to be mindful of their code of conduct on this matter. At the same time it is clearly a way in which the chaplain can assist DiC by de-stigmatising societal attitude to disability, illness and death. Touching the ‘untouchables’ not for the purpose of glorifying chaplaincy in some kind of self elevating demonstration but in glorifying Christ, weeping with those who weep, comforting the downhearted and restoring the modern-day lepers; the disabled, the Aids patient, the person with dementia or the still-born baby (John 2001, p11). In this way Christian chaplains are following Christ who was particular about restoring the disabled and the sick as cleansed and forgiven people within their communities (Percy 2001, p.308). See the stories of the haemorrhaging woman[1], the deaf[2], the blind[3], the paraplegic lowered through the roof[4] and the man with leprosy[5] where Jesus was not tainted by touching the ‘unclean’ but they were transformed by his touch and re-established within their communities (ibid., p.309).
One feature that is present in many of the comments above emphasise the importance of diversity within the chaplaincy team. Despite being a small department in LTH, the mutuality and diversity of the collective enables chaplaincy to contribute positively to DiC. Diversity in sexuality, disability, gender, age, race, faith, Christian religious tradition and personality types enables chaplaincy to respond within the NHS with a greater effect than their % staff share in the organisation as a whole.[6] The FG participants mentioned the funerals, the baptisms, the bedside communions and anointing alongside other pastoral roles but a diverse team widens the scope for the prophetic and the seat on ‘the edge’ within the organisation. The chaplain promotes DiC through membership on the LREC, the DigW, the Organ Transplant group, the Palliative Care group, the Psychosocial group, the Interview panel, Staff induction, PALS mediation, bereavement groups and as advocate. It is fair to say our FG participant who referred to ‘large chaplaincy team’ implied diversity was a way in which chaplains positively affect DiC. Granted, this may be a LTH perspective, but imaginative chaplaincy recruitment in other NHS Trusts and use of honorary Chaplains and well trained volunteers can enhance ways in which the chaplain can assist the promotion of DiC.
[1] Matt 9v20ff, Mark 5v25ff, Luke 8v43ff[2] Mark 7v32ff[3] Mark 8v22ff; John 9v1ff[4] Mark 2v1ff[5] Mark 1v40ff[6] In 2007 Chaplaincy comprised .05% or 1/2000 of the LTH staffing budget.
Theme 6: Emancipatory hopes of group participants
It is clear from observed linguistic styles and emotion in our research that some participants hoped to stimulate change or at least convey feedback and instructions to the clinicians in the NHS via the FG (Cf. Whitehead and Wheeler 2008, p.383). This could imply that forums and compliments and complaints procedures such as PALS[1] are not adequately marketed by healthcare organisations. Perhaps, the chaplains are perceived to be on ‘the edge’ of AHPs and a spokesperson for those who are marginalised by society. If this were so, our dissertation question ‘can the chaplain assist…?’ can again be answered affirmatively. It is not possible to do more than hypothesise from our research. Inevitably, this project highlights the need for more research and greater analysis into ways in which DiC must be championed by healthcare professionals with each AHP asking the same question as chaplains in this dissertation ‘can the AHP assist the promotion of DiC?’
Re-focusing on this research, the emancipatory hopes of group participants were highlighted by analysis, revealing an interesting response to our dissertation question, in that, the chaplain was perceived as an information conduit or a mediator between the healthcare services and the participants. The following selection of participants’ responses implies the chaplain is a messenger for feedback, an obvious positive contribution to promoting DiC.
A plea that was echoed in most of the FGs, ‘Tell them to treat people as people and not things’ (160.1). Notice the instruction to the researcher/ chaplain to ‘tell them.’ ‘Them’ being the healthcare professionals.
In a similar style of ‘us and them’ a member of FG2 said ‘if they are telling something or discussing it, the disabled person should be included in the discussion’ (247.2). From the long-term disabled perspective, a message via the messenger to ‘them’ - ‘I think another thing is, please listen to what we have got to say because we know what our needs are, in these circumstances better than they do. So listen’ (210.4).
One of the support workers to a participant with special learning needs said, ‘having doctors understand what is actually ‘normal’ for that person is very important’ (143.2). To which another instructed, ‘you need to pass that sort of information on to the people’ [sic: healthcare professionals] (144.2). Another participant of FG2 said chaplains can ‘make sure that the person might have a special need and the hospital would take notice’ (228.2). From this participant’s perspective the chaplain has the pastoral capacity to notice special needs and then, from their position within the organisation, that the hospital will take notice of the chaplains concerns.
The Kings Fund review paper hope their report will contribute to hospital managers ‘continuous efforts to improve patients’ experience’ (Goodrich and Cornwell 2008, p.ix; c.f. Franklin et al. 2006, p144). Listening to and responding to people’s stories has important implications for the quality of care provided. Likewise, this paper has emancipatory hopes especially to convey FG participants’ feedback to ‘them’ [sic: healthcare professionals].
Conclusion
The research indicated that these participants have differing understandings of the meaning of dignity per-se and of DiC. There were recurring ideas such as respect and good, non-patronising communication and specifically for ‘DiC’ - privacy of person and body, privacy in confidentiality and good staff patient communication was repeated in reply to both opening questions.
In discussing their lived experience of DiC in the five FGs and reflecting on implications for healthcare it is clear that there was a significant percentage of negative experiences that participants were prepared to share in the hope that healthcare professionals would take note. The linguistic style in discussion indicated the importance of this subject to our FG members.
The members’ contributions highlighted ways in which spiritual care can contribute to DiC in general and specifically for disabled people. It would be too exuberant to suggest this study gives ground-breaking qualitative data to positively support chaplaincies many and varied roles in contributing to DiC. Non-the-less efficacy is an important aspect of modern day chaplaincy and this research indicates a 90% ‘affirmative’ response to questions about chaplains’ contribution to DiC for the disabled, specifying 18 different ways.
It is reasonable to suggest that these FG participants are a fair cross-section of society and therefore a fair representation of the people groups in society.[2] Their expressions indicate confusion over the meaning of DiC, a phrase adopted by the DoH to challenge healthcare professionals.
In answering the questions regarding the chaplains role, there was a general positive tenet in peoples responses. Negative comments could be described as constructive criticism and will be valued and noted by chaplains who access this data. In the end, participants were able to suggest 33 ways in which chaplains assist the promotion of Dignity in Care.
[1] PALS: Patient Advice and Liaison Service [2] It is acknowledged that there were no ethnic minority participants. Thus the FGs could not be taken as representative of different cultural perspectives with obvious religious implications. Scope for further study.
Chapter 5: Reflexive and Reflective Analysis
Reflexive analysis is an important aspect of qualitative research. Swinton et.al, define reflexivity as ‘a process of critical self-reflection …that enables [the researcher] ….. to respond to his contribution to the proceedings’ (Swinton and Mowat 2006, p.59). Cobb and Robshaw refer to ‘reflective practice’ as a contemplative approach to vocation and should be central to a chaplain’s spirituality (1998, p.145). In this chapter I will engage with these two approaches. The first, concerning the research process, being reflexive about the method and the epistemology. The second reflecting on how the research has shaped my chaplaincy practice. Furthermore, in this chapter I have added practical theological comment on key issues that became evident during the focus group discussion and subsequent ‘immersion’ in the transcript.
Good research practice involves reflecting on the way the research is carried out throughout the whole research process (Litosseliti 2003, p.2; Hardy in Cassell et al. 2005). It is important to appreciate that there are many factors within the process that shape the research outcomes. Firstly, and most obviously, is the question ‘funnel’ outlined in Chapter 3 (Figure 2). Secondly, there is the autobiographical impact of the researcher; the chaplain who is disabled and active in the DigW has crafted the dissertation to focus on an under researched area in disability studies and in healthcare dignity research. Some of the limitations of this have been acknowledged in Chapter 3. Thirdly, the ongoing reflexivity led to several amendments that undoubtedly affected the outcomes. For example, FG1 stumbled over the ‘storming’ question ‘what do you understand by ‘dignity?’ For subsequent FGs I added an ‘easy’ question ‘do you believe every human being should be treated with dignity?’ This generally received a resounding ‘yes’ and naturally flowed into the storming question with improved discussion.
Some amendments concerned timing, for example, the researcher omitted the forming stage question for FG5. This group were sacrificing their lunch break to participate and they already knew each other and had group awareness. Similarly, for the ‘Adjourning stage’ I chose to vary the concluding question sometimes for brevity and sometimes to draw emancipatory hopes from the participants. These are ways in which criticising and observing my epistemological understandings created alternatives that, I believe, positively affected the outcomes (Cassell et al. 2001).
Turning now to reflective analysis, Swinton and Mowat say ‘personal reflexivity….suggests that all research is, to an extent, autobiography’ (2006, p.60). As a member of the DigW and a chaplain who is physically handicapped, I have been drawn into the research in a way I had not expected. Many of the stories shared in the FGs have changed me and many of the comments and discussions have remained with me, some because of the humour and some because of the hurts of indignity shared. I have been able to reflect on the impact and the irony of being disabled and active in healthcare as an AHP. I have learnt that, besides being a chaplain, I represent this disparate group known as ‘the disabled’ not simply as one of ‘them’ but as an incarnational slur on the medical model’s perception of disability as tragedy or abnormality. I have also been drawn to highlight the importance of DiC and petition for ‘dignity audits’ and promote awareness of campaigns such as ‘Dignity Champions’ (Department of Healthcare Networks, 2008). This chapter applies some of the ways in which reflective practice has influenced both my healthcare practice and practical theology application.
The following comment, from a member of FG3, highlights the importance of our dissertation question for reflective analysis. Irrespective of disability, degenerative or non-deteriorating, a persons essential dignity is a given and a reflection of the imago-dei within every person.
‘Perhaps they [sic: people with dementia] talk a lot of nonsense at the time but when you listen to them they were schoolteachers and what have you, professional people and they are still that person even if the brain is not functioning quite as it should’ (13.3).
The promotion of DiC includes the promotion of the wholeness of persons as a person in relationship and as a person on life’s journey. By and large the medical model construct of mending the ailing parts of a patient ignores the importance of that person in relationship and that person’s story, even in today’s favoured patient-centred approach. This is particularly relevant for persons with degenerative disabilities and those who are disabled as a result of traumatic injury, as in, spinal injuries (FG4). For each of these groups, plus the older members in FG3, the telling of the story is fundamental to who they are as persons. Much could be written within the disciplines of narrative or social ethics and story telling theology (Hauerwas 1981). In this chapter I will refer to narrative and social ethics in so far as it relates the dissertation question. I will also reflect on the ‘medical model’ of disability that is part of a disabled person’s un-dignifying experience of healthcare and compare the disability movement’s preferred ‘social model.’
The Golden Rule (GR) was one of the themes that recurred in different answers during the research. It is also an aspect of being persons in relationship. The GR seems to be embraced by persons of all faiths and none. There is, however, some literature that urges caution in using this rule in healthcare practice. I will reflect on that in this chapter also. Finally, in this chapter I will further respond to the dissertation question by reiterating ways in which the chaplain can assist the promotion of DiC for the disabled.
Medical Model of Disability
There have been a number of references in earlier chapters to the medical model of disability. This is a lens through which healthcare professionals tend to understand and ‘treat’ disability. Disabled activists would argue that this lens is in itself an oppressive viewpoint and part of a disabled person’s un-dignifying experience of healthcare. In this section I will examine two models of disability, the medical and the social model. These are just two of a number of models, which shape and influence our understanding of disability.
The medical model is the traditional view of illness in society today. It regards the body as a biological machine and pathology is regarded as ‘undesirable deviations from biological norms’ (Pattison 1989, p.23). ‘The medical model focuses on issues of pathology and eitology. The objective is to discover the biological roots of the disability and attempt to normalise and de-stigmatose it and to seek more effective ways to counter the worst manifestations of it.’ (Swinton 2000, p.33). The disabled person is treated as an afflicted patient who desires and gratefully accepts treatment.
This model may teach about the mechanics of human beings but it says little about being human, and nothing about beings created for community and for social interaction.
‘The Biological tendency is to focus on the individual apart from the social context… This is an error based on the assumptions of the medical model an error that enables society to abrogate responsibility for the oppression and ‘disablement’ of disabled people. As such it requires a liberating counter-understanding’ (Swinton, 2000, p.34).
Swinton is writing from a mental health perspective but I believe it applies to all disabled. The medical model’s approach highlights the abnormality, whereas, a major part of a person’s disablement lies, not in their impairment but in the society and the environment where they experience their difficulties.
In reality, medicine cannot be value neutral despite the fact that doctors do not tend to see them selves as proponents of the medical model. Doctors are programmed to ‘fix what is considered to be pathological and dysfunctional’ (Marks 2001, p.67). The social model of disability is seen as a corrective to the medical model.
Social Model of Disability
Disabled scholars espoused the Social Model of Disability by focussing on disabled people’s rights. This model claims that people are disabled because of the effect disabling environments, attitudes and cultures have on them. ‘Social and institutional structures in which certain physical, emotional and intellectual differences are identified and treated’ (Marks 2001, p.4). Rather than focussing on impairments that distinguish disabled people from others ‘the social model brings a cross-disability perspective’ (ibid).
The Social model was not developed to juxtapose the medical model, it was developed to emphasise negative media representations and the disabling barriers within education, working environments, transport, healthcare, the benefit system, in buildings and public amenities. This model emphasises that medical interventions cannot achieve ‘inclusion in a society constructed by and for non-disabled people’ (Barnes and Mercer 2005, p.531).
A criticism of this model is that it is unrealistic about the medical problems faced by disabled people. Psychoanalytical writers accuse the model of failure to come to terms with their problems and a denial of loss (Marks 2001, p.13).
Another criticism of this approach is that despite being called the ‘social’ model it prioritises work and independence above community and interdependence. Shakespeare adds that it fails to encompass the range of different disabled peoples experiences (Shakespeare 2006, p55). It is important to value the placing of individual’s narratives within communities and social networks. People with disabilities from accidents or disease have a story to tell. ‘We are creating ourselves for ourselves, rather than relying on the traditional narratives of biomedical intervention’ (Shakespeare in Barnes and Mercer 1996, p.95).
More recently, Shakespeare accuses the disability movement of creating a ‘mythical dichotomy between medical and social thinking.’ On one side the medical model views disability as caused by impairment and the social model says disability is caused by disabling social barriers (Shakespeare 2006, p.26). ‘My objection to the social model is not that it is partisan, but that it is wrong. It fails to capture the complexity of disabled people’s lives (Shakespeare 2008, p.11).
Both models lack a spiritual dimension and Sulmasy advanced the Biopsychosocial-spiritual model within the context of end of life care. It is not a model of disability as such but it highlights the absence of the spiritual in other models. ‘Contemporary medicine still stands justly accused of having failed to address itself to the needs of whole …persons’ (Sulmasy 2002, p.24, Cf. Greenstreet 2006, p.29). In ‘this model, the biological, the psychological, the social and the spiritual are only distinct dimensions of the person, and no one aspect can be disaggregated from the whole’ (Sulmasy 2002, p.27).
Shakespeare also fails to acknowledge the spiritual dimension but he does advocate a ‘plurality of approaches:’
Feminism offers the concept of the personal being political; Foucault highlights the medical gaze and genealogical method; post-structuralism deconstructs notions of identity; postmodernism challenges binary dichotomies and opens up space for complexity’ (Shakespeare 2006, p54 Cf. Williams, in Shakespeare 2000, p.244).
Like a magpie, Shakespeare admits to taking useful elements from different theorists in an attempt to avoid the straightjacket of particular models. Shakespeare argues that disability is an interaction between individual and structural factors. ‘The experience of a disabled person results from the relationship between factors intrinsic to the individual, and extrinsic factors arising from the wider context in which she finds herself’ (ibid p.55). People are disabled by the environment AND their bodies.
The DiC of disabled people is tarnished by the medicalisation of disability and by a failure to fully embrace the wholeness of the person as body, mind and spirit. On the other hand the social model preferred by disability activists, appears to be in denial of the importance of story, the reality of impairment and that most disabled people would welcome medical intervention that would lessen the impairment or assist in the management of it. Both models contribute in different ways to disabled peoples un-dignifying experiences in healthcare. I conclude that there is not one model that adequately encompasses the complexities of disability and impairment. In the absence of an ideal, Shakespeare’s ‘magpie’ approach is a valid compromise.
A Community of Characters
The previous section emphasised the importance of dignity enhancing space for people’s story to be heard. The chaplain has a role to play in promoting dignity in this way. Chaplains often create space through pastoral visiting for people to verbalise their experience of trauma and inevitably they introduce family and community as they contextualise their narrative. Hauerwas argues in Community of Character that ‘the form and substance of a community is narrative dependent and therefore what counts as ‘social ethics’ is a correlation of the content of that narrative’ (Hauerwas 1981, p.10). With the emphasis in healthcare being on patient centred care, the patient is an individual. In limiting the ‘person’ to individuality I believe healthcare services are overlooking an important aspect of DiC. The ‘individual’ is a person in community, in relationship, with narrative. FG4 had an acute awareness of this, speaking about the camaraderie and community that builds up on the hospital wards. During longer periods of hospitalisation, community evolves and begins to supplement the community the patient has been removed from through trauma.
One participant asked another, ‘How do you think that would be affected by a single room?’(141.4), ‘You’re losing community’ (142.4) he replied. Earlier in the discussion one participant emphasised the way patient-centred care robs individuals of essential community; ‘22 years ago it was a lot better…. now it’s about individuals on a ward, nobody does anything together….it’s all individuals, we were a group’ (90.4). The next participant reminisced, ‘when I was on the ward, it was mixed, there was young people and it were great… everybody seemed to be on the same team’ (91.4). Notice the reference to team, in other words ‘community.’ Another feared for future DiC, ‘you will have newly injured patients who lose the benefit of being with everybody’… ‘things that encouraged community when I was in, are gradually going away’ (94.4; 93.4). Participants lamented, ‘the banning of alcohol has had a big effect on the wards… no socialising’ (92.4). The combination of youthfulness and beer in the lockers paints a picture of a ‘community of characters’ on the ward!
One participant had insight into another way the chaplain contributed to his DiC. As link-person between the patient and the community ‘out there’, conveying messages that the community was thinking about and praying for the patient. This group in transition were learning to link the community pre-disability with the post-disability fellowship of disabled and the world of healthcare.
It is as if the participants who had long term experience of hospitalisation, had a deeper understanding of the communal bonding that took place, the inner healing of camaraderie and the need for future fellowship. Perhaps it is because of their transition to permanent disability, many of them youthful when their trauma occurred, that they highlighted this aspect of DiC overlooked by the DoH’s DigCh, encouraging narrative, encouraging community.
Theologian and Ethicist, Hauerwas says ‘we must challenge ourselves to be the kind of community where such a story can be told and manifested by a people formed in accordance with it…’ (Hauerwas 2005, p.35). Hauerwas’ viewpoint has its critics, Hobson argues that his exuberance and rhetoric blurs the fact that he is talking about the church as community in ‘idealised terms …and denying that he is engaged in such idealism’ (Hobson 2007, p.305). Against Hobson, I believe we can apply Hauerwas’ comments on ‘loss of narrative’ to our dissertation question regarding loss of dignity for disabled people (Cf. Hauerwas 2005, p.9). Hauerwas’ social ethic is an important contributor to the debate on community that evolves in healthcare and a chaplain’s role in facilitating it. This was illustrated, in part, during the forming stage of our FG research. When participants were invited to précis their story the group atmosphere warmed noticeably. As people told their life-story listeners and speakers witnessed evolving FG ‘community.’ It is another way in which chaplains can contribute to DiC - by facilitating narrative. This leads us to our next section a reflection on the ‘Golden Rule.’
The Golden Rule
DigCh number two says ‘support people with the same respect you would want for yourself or a member of your family.’ This is a derivation of Jesus’ closing words from the Sermon on the Mount[1] known as the ‘Golden Rule.’ The phrase has led to much academic comment especially in the fields of Ethics and Philosophy. It is not possible to critique the rule from such a wide perspective in this paper and I will limit my reflections to healthcare and practical theological comment.
Most world religions have a version of the GR in their religious writings, but Jesus is credited with transposing the rule into the positive format i.e. from ‘do not treat others as you would not wish to be treated’ (Confucius) to ‘do to others what you would have them do to you.’11
Bible commentaries point out that the positive is more demanding than the negative being a call to unselfish love in action (France et al. 1997, p.145; Stott 1978, p.191; Carson et al. 1994, p.914). The negative version can be passive requiring nothing more than mental acknowledgement. Healthcare ethicist Milton develops the positive heuristic attempting to bring theology and healthcare together. ‘The concept of dignity…is a reverence for others…an affirmation that others matter in the same way as oneself matters’ (Milton 2008, p.208). Unfortunately what he manages to do is create a passive version of the positive rule.
The distinctive Christian concept differs from the healthcare application in that it goes beyond addressing the immediate need and ‘goes the extra mile.’ For example, the four men with their paraplegic friend[2] refuse to be deterred by the crowds surrounding Jesus. They go the extra mile and lower their disabled friend through the roof. In another ‘Christ encounter’ the Syrophoenician woman refuses to be deflected by Jesus’ apparent prejudice in favour of the Jews. Her persistence results in racial and gender prejudice being challenged (Percy 2001, p.307; Yancy 1997, p.152). Thus, issues were addressed beyond the immediate physical need. In Matthew 8, a Roman Centurion travelled to Jesus, appealing for his servant ‘lying at home paralysed.’ His faith in Christ and his commitment to the servant demonstrate the GR in action and the servant is healed. The healing opened the way for the ‘healing of a barrier by the inclusion of an excluded and despised group’ (John 2001, p.157). Finally, the parable of the Good Samaritan[3] demonstrates the ‘extra mile’ of the GR. The story appeared to be about a person who suffered injury through a violent attack. The story was in fact about ‘who was the good neighbour of the patient.’ The spiritual application of the GR asks; ‘what type of neighbour/AHP will I be in response to the patient’s needs.’
In contrast, some healthcare literature suggests the Rule’s power is in ‘reciprocity’ which appeals to the selfishness of human nature (Goodrich and Cornwell 2008, p.3; Corazzini et al. 2006). Practical Theologian Lyle, admits there is normally a degree of mutuality in this proactive ministry but says it is rooted in agape[4] (Lyall 2001, p.155). Some argue that humans are in essence self-centred and apparent concern for others can be linked to own self interest. We do unto others so that they will do unto us (reciprocity). Others suggest as humans we have a natural tendency for desiring the well-being of people we encounter (Atkinson and Field 1995, p.189). The bible teaches Christians to do nothing out of selfish ambition.[5]
Some of the responses in this research that refer to the GR show these different shades of the rule, the passive, the selfless and the reciprocal:
‘Everyone is entitled to respect from others and you’ll have respect back’ (11.3).
‘At the end of the day we are people and we want to treat others how you want to be ‘treated’ don’t you?’ (23.4) (Cf. 50.2).
Each of these responses adopted the positive version of the rule. One of the members of the healthcare professionals group (FG5) gave a cautionary response and hinted at problems in applying the rule in healthcare:
‘What if you are not aware of the other person’s preferences? Bearing in mind cultural and ethnic background…people often say ‘treat others as you would wish to be treated yourself but if somebody is from a very different culture ….you need to try and understand and ask questions about their own beliefs before you impose something on them’ (21.5).
USA researchers Corazzini et al. (2006) engaged in ethnographic research, observing references to the GR in care practised in four nursing homes. They found that the GR was prevalent. In the discussion that followed they expressed the same concern that our FG member raised. Diversity in culture, ethnicity, religion and age of staff members’ render it unrealistic to expect staff to know an individual’s wishes (Corazzini et al. 2006, p.285).
SCIE explains its use of the GR in the DigCh as follows ‘by this we mean, people should be cared for in a courteous and considerate manner…participating as partners in decision-making about the care and support they receive’ (SCIE 2006). The explanation goes on to speak about patient responsibility and support services. Surprisingly, the explanation bears little resemblance to the rule or an exegesis of it. Granted, the ‘courteous and considerate manner’ is how you would want to be treated but there is little else that links the rule to the explanation. I suggest the absence of specific direction from SCIE on the application of the GR indicates a difficulty in healthcare of adopting it. Perhaps this is ‘what happens when two worlds collide,’ the theological and the medical. Christ’s positive rendering of the GR was to disciples, the faith community. To ignore the context of this derivation ignores the challenge of selfless servitude in response to the call to follow Christ. This cannot be a basis for DigCh number two because it is Christian faith specific.
One USA based research advocated abandoning the GR, arguing that it is a potentially dangerous method (Kothari and Kirschner 2006, p.68). Their research observed staff’s ability to predict disabled patients’ preferences regarding quality of life and end of life care. The assumption that one’s reaction to a given situation is similar to another’s is flawed. Furthermore, they say, it is more likely to be utilised by clinicians in situations where they have insufficient information to apply the rule. The consultations are so brief, that ‘extrapolation from their experience is unjustified’ (ibid 2006, p.71). I agree with the cautionary words on both theological and medical grounds. Any rule of thumb must be used with caution. There will be exceptions to any rule and the research above shows there will be situations in medical ethics where the professional cannot imagine patients’ wishes. I believe more research needs to be carried out on actual patients’ experiences, including the spiritual dimension, before we can hypothesise.
Can the Chaplain assist the promotion of DiC?
I have responded to the dissertation question throughout the paper. In this concluding section I wish to present other ways in which chaplains do contribute to the promotion of DiC for disabled and non-disabled people in healthcare. This list cannot be exhaustive, each chaplain brings to their healthcare encounters the uniqueness of themselves, gender, personality, training, faith etc. and thus will contribute to DiC in unique ways.
The most obvious contribution to DiC is the Chaplain as ‘pastoral carer.’ In-depth discussion of pastoral care is beyond the scope of this dissertation but Greenstreet (2006, p.49) argues for the pastoral ‘as a valid component of care…integral to and not separate from other aspects of care’. Clebesch and Jaekle’s widely accepted definition of Christian pastoral care is ‘the helping acts done by representative Christian persons, directed towards the healing, sustaining, guiding and reconciling of troubled persons’ (Speck 1988, p.62; Pattison 2000, p.15; Martin 1981, p.193). Pastorally, a chaplain can be drawn into a disabled person’s trauma during their time in acute hospital care. Furniss (1995, p.52) calls this the ‘ministry of presence’ - the chaplain being ‘present’ with those who are trying to make sense of their forced membership into the ranks of the disabled.
Nouwen develops this further; the chaplain arrives at the bedside offering ‘hospitality’ - concentrating on the guest. ‘Paradoxically, by withdrawing …out of humility, we create the space for another to be him or herself and to come to us on their own terms….an empty space where the guest can find their own soul’ (Nouwen 2005, p.92). The chaplain goes beyond pathology and focuses on human relationships, community and spirituality at the point of crisis, areas of focus that are often overlooked at times of disabling trauma. In relationships the priority is the personhood of the other, not the illness. Chaplains can offer ‘a vital counterbalance to positivistic, medicalised approaches’ (Swinton 2000, p.37).
There are many other aspects of chaplains’ enhancing dignity, such as, prayers for healing and anointing with oil[6], Holy Communion shared with the Christian, the reassurance of the ‘Shema’ recited to the Jewish patient or the comfort of prayers or verses read from the Qur’an to a Muslim patient. Greenstreet adds ‘practice of religious ritual … can be a source of comfort during difficult circumstances, professionals need to facilitate access to …fulfilling this need and respecting religious and cultural preference when planning care…. The challenge in our hospital institutions is to achieve an ambience to allow prayer, peace and privacy’ (Greenstreet 2006, p.50).
Some of the participants in my FG study referred to the possibility of a disabled chaplain being more able to empathise with the disabled, another aspect of giving DiC. Nouwen wrote about the ‘wounded healer’ wherein he depicts Christ’s brokenness as our way to wholeness (Nouwen 2005, p.88). The wounded healer, empathising with the broken person, ‘not offering an ideology but himself’ (Nouwen 1994, p.20). It is possible that a ‘wounded chaplain’ could also represent Christ’s brokenness.
There are several other, practical ways in which the disabled chaplain can assist the promotion of DiC. The wheelchair-based chaplain arrives already seated, already at eye level to the disabled patient. There is no feeling of towering over the guest or of giving negative signals of staying too long (by taking a seat). Being a disabled chaplain to a disabled person also invites and affirms reciprocity of eye contact of touch and words. Some may define this as empathy. ‘Offering his own experience as a source of healing to those who are lost in the darkness of their own misunderstood sufferings’ (Nouwen 1994, p.87).
In some ways the wounded chaplain is an incarnational challenge to the able-bodied norm of Chaplaincy and indeed priesthood. A challenge, both to the medical practitioners (who often marginalise the significance of spiritual care), and to the disabled person, family and friends who have subconsciously adopted a medical model approach to the disability. The disabled chaplain declares, without words, that difference is normal, disability is not impairment, disability is surmountable and is not un-dignifying in itself.
Conclusion
In this chapter, I have differentiated between reflexive and reflective practice, both essential disciplines for a chaplain-researcher. The former engages with the dynamic of the research process and the latter encourages reflection on ways the study influenced me as an AHP and a theologian.
The reflection led me to examine two models of disability from a chaplain’s perspective. Each model, in some way undermined the dignity of the disabled, while a third model, the Biopsychosocial-spiritual model had an ‘end-of-life’ rather than a disability focus.
Some FG participants introduced the GR as a way in which DiC can be ensured. In context, the rule will do more than meet the patient’s need. I acknowledged shortcomings of this approach suggesting it is a collision of two worlds, the theological and the medical. The Christian chaplain, through ‘living by the rule’ will further promote the DiC of patients, carers and staff alike. Finally, this analysis included a concluding section on practical pastoral ways in which chaplains do assist the promotion of DiC.
[1] Matthew 7 v 12 (NIV) ‘In everything, do to others what you would have them do to you.’ [2] Mark 2 v 1-12 [3] Luke 10 v 30-37 [4] Agape: Greek noun meaning sacrificial love (p.12 Eds. Atkinson and Field 1995) [5] Philippians 2 v 3 [6] James 5 v 14 ‘pray over them, anointing them with oil in the name of the Lord.’
Chapter 6
I conclude on a positive note, I believe a new day is dawning for Chaplains in healthcare. This research reveals significant positive comment in response to non-leading questions about how chaplains may affect DiC. More qualitative research is needed to provide further evidence of the many ways in which Chaplains contribute to patient’s DiC. Participants in this research creatively gave 33 ways in which they believed chaplains could positively assist DiC. None-the-less the value of chaplaincy in healthcare is contested and changes may be ahead as chaplaincy aspires to remain on the edge of the NHS as financial constraints and secular voices increase. I am encouraged by a subtle change in terminology from measurable targets to words like compassion and dignity as descriptives for quality healthcare. I believe the politicising of disability has led to a number of positive outcomes in society such as the DDA. It is important now for the disabled studies researchers to take the hand of other researchers, including chaplains and healthcare professionals, to hear and understand the experiences of people with special needs in healthcare. The analysis of such data should lead to healthcare professionals responding to fulfil the emancipatory hopes of this chaplain, these FG participants and disabled patients.
This paper focuses on ‘the experience of the Disabled in healthcare.’ If a similar focus were applied to the race debate, gender and sexual orientation issues there would be a general acceptance of difference and equality. These debates are already on the route-map with labels that indicate society’s leanings in favour of the minority. Society does not wish to be labeled homophobic, racist or sexist but there is no widely accepted negative label for the oppression of the disabled, this implies marginalization. Non-the-less, I believe a change is ‘in the air.’ NHS organisations are now using language such as ‘Disability Equality Duty’ and ‘positive discrimination’ in favour of the disabled. The Practical Guide for Creating a Disability Equality Scheme shows a shift from reacting to DDA Legislation to a more proactive approach ‘towards a positive duty to actively promote equality of opportunity for disabled people…equality has to be mainstreamed into all policies, procedures and activities at the outset’ (LTH NHS Trust 2006, Par.1.25). Colin Barnes does not write from a healthcare perspective but he is sceptical about the future of disability in the workplace (Barnes 2005, p.539). I believe those who have a voice must affirm the positive developments which are being made. Shakespeare (in Howell et al. 2007) takes a similar view in a ‘Framework of Different Differences’ commending the Partners in Practice Project (PiP) which delivers disability equality teaching to undergraduate medical students. I am optimistic, sensing a change from disability being an issue of charity and benevolence to one of mutuality and inclusivity in a pluralistic society.
On the other hand, the literature review in this dissertation revealed an absence of research and theoretical comment on the experience of the disabled in healthcare and there are calls for more research to be undertaken (Koenig 2008; Shakespeare 2006; Swinton 2006, Mowat 2008.). The abundance of literature on spirituality and dignity fails to adequately address issues raised by the ten features of quality care known as the ‘Dignity Challenge.’ The FG research that forms the basis of this paper is one response to this dearth. The research data contained important nuggets of people’s understanding of DiC together with their healthcare experience. The different FG themes enabled a comparison of the disabled and non-disabled response and the healthcare professionals and non-professionals response. The study concurs with earlier research and comment that there is wide diversity in people’s understanding of dignity and my critique ventured that there was a political root to the adoption of the ‘DiC’ sound-bite as a measurement of quality care services.
The literature review also discovered an implied negative response to the dissertation question from secularisation. This threat need not be destructive. UK chaplaincy must respond through partnership with fellow AHPs, through highlighting its core skills and key roles and by increasing their evidence base of effective healthcare practice. I believe the calls for increased efficacy and professionalism are being heard within the profession.
I conclude with a positive answer to the question, ‘can the chaplain assist the promotion of DiC.’ The focus group research analysed in chapter 4 suggests ‘yes’ the chaplains do assist. The reflection in chapter 5 suggests ‘yes’ the chaplain as pastoral carer creates space where spirituality can be explored, where community can evolve, where narrative is heard and where religious ritual can be practiced in healthcare.
A new is day dawning for healthcare Chaplains and dignity-in-care for the disabled.
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Appendix A: Focus Group Participant Information Sheet
Participant Information Sheet
Can Chaplains assist the promotion of Dignity in Care for the disabled?
A focus group study of ‘dignity in care’ and the Chaplains role in pastoral care for the disabled.
Introduction
‘Can the Chaplain assist the promotion of Dignity in Care when disabled people’s experience of healthcare may be un-dignifying?’
From time to time people with special needs will be a service user of various health care providers and will therefore, come under the pastoral care of health care chaplains. This research is interested in exploring whether the chaplain’s pastoral role can contribute to essential dignity in care for disabled people.
Focus groups are the research method. A focus group is a group of people invited by the researcher to discuss and comment on a topic from personal experience. Research findings will be submitted as a 16000 word essay as part of a higher education course at Cardiff University. Later, the essay may be shared with relevant religious and medical journal groups.
Invitation
You are being invited to take part in this research study. If you agree to participate you will be a member of one of five separate focus groups to explore the topic.
Before you decide whether to participate, it is important for you to understand why the research is being done and what is involved. Please take time to read the following information carefully and, if you wish, discuss it with others. You are entirely free to decide whether or not to take part in this study. If there is anything that is not clear, or if you would like more information, please do not hesitate to contact the researcher Rev Kelvin Burke at 01132065935 or email Kelvin.burke@leedsth.nhs.uk
What the study hopes to answer
This study seeks to record people’s understanding of the basic requirements of dignity in care for disabled people. The role of the Chaplain in ensuring dignity in care is also explored.
What the study involves
If you decide to take part in the research you will be asked to attend the venue for your focus group. There will be approximately 8 people in each group and I will ask the same 6 questions to each group. There are no right or wrong answers, just your comments and experiences. The focus group should last approximately 1¼ hours. Each focus group will be recorded to facilitate a full transcript of the focus group discussion. I will analyse the answers as part of my essay. Once the study has been completed it will be written up for submission as a ‘Masters of Theology’ dissertation.
Confidentiality
All recorded focus group discussion for this research will be kept strictly confidential. No comments you make in the group will have your full name or address added. You cannot be recognised from the research material. The transcript of the focus group discussions may be looked at by adjudicators of Cardiff University, by representatives of regulatory authorities and by authorised people from the Leeds Teaching Hospitals NHS Trust to check that the study is being carried out correctly. All who will read this dissertation will have a duty of confidentiality to you as a research participant and nothing that could reveal your identity will be disclosed outside the research site.
~~~ Thank you for your help ~~~
~~ Rev Kelvin Burke ~~
29th September 2008
Appendix D Specimen of Focus Group Transcript and researcher’s workings
The 5 FG transcripts of 35,000 words have been coded according to participants name code, linear order and focus group number.
KB is the researcher’s initials and questions and KB comments have been highlighted in bold type.
Participant’s comments have been referenced as follows: Da2 22.2 ‘Does people patronising you come into it?’
Explanation: Participant Da2 made the 22nd comment in Focus Group 2 (22.2): ‘Does people patronising you come into it ?’
The researcher’s workings were columnised into 3 columns to highlight Arguments participants were making, Assumptions being made and emotions, tones, instructions and other Linguistic resources being used. This approach is suggested by Lisa Litosseliti in Using Focus Groups in research (2003).
It is not practical to reproduce the entire transcripts and workings. In the following specimen transcripts and workings I hope to provide a flavour of my approach, my thinking together with participants’ comments.
