Exploring meanings of illness causation among those severely affected by multiple sclerosis: a comparative qualitative study of Black Caribbean and White British people.

BACKGROUND: Illness attributions, particularly for those living with life limiting illnesses, are associated with emotional adjustment or psychological distress. Few studies have examined attributions among people severely affected by multiple sclerosis (PwMS), and specifically among from diverse communities. This study aimed to explore and compare the presence and construction of meanings among Black Caribbean and White British PwMS. METHODS: Cross sectional qualitative interviews were conducted among Black Caribbean (BC) and White British (WB) PwMS with an EDSS of ≥6.0 (severe disease). Data were analysed using the framework approach. RESULTS: 15 BC and 15 WB PwMS were interviewed. Attributions were complex with most PwMS reporting multiple explanations. Uncertainty, represents the first theme surrounding the aetiology of MS where participants constantly rehearsed the "why me?" question in relation to their illness, a number expressing considerable frustration. The second theme, 'logical and scientific', was voiced more often by WB PwMS and accounts for a range of genetic/viral influences, stress, environmental and lifestyle factors. Third, the 'supernatural' illness attribution theme departs from a biomedical perspective and was reported often among BC PwMS. This theme included the sub-categories of tests of faith and divine punishment, a view although exclusive to BC participants but was sometimes in conflict with notions of modernity. CONCLUSION: Our findings identify evidence of cross-cultural and intra-group diversity in relation to MS causation. A greater professional awareness of the processes used by PwMS from diverse communities to make sense of their situation will enable health care professionals to facilitate effective support for those in their care and channel relevant psychosocial resources to them. This requires heightened skills in communication and cultural competency.

Comparisons of Costs between Black Caribbean and White British Patients with Advanced Multiple Sclerosis in the UK.

Background. Multiple sclerosis (MS) is now more common among black and minority ethnic groups in the UK but little is known about the costs of care amongst different ethnic groups. Objective. This study examined and compared service use and costs for people severely affected with MS from Black Caribbean (BC) and White British (WB) backgrounds in the UK and identified predictors of cost for both groups. Method. Population-based cross-sectional study of 43 BC and 43 WB patients with MS (EDSS ≥ 6) and their informal caregivers recruited from an MS service in southeast London. Interviews collected data on health and social service use and informal care support. Costs were calculated using UK unit cost data. Using regression analyses we compared costs between the ethnic groups and identified possible predictors of cost. Results. The mean (SD) costs for the WB and BC groups were £ 25,778 ( £ 39,387) and £ 23,186 ( £ 30,433), respectively. Results identified no significant difference in total cost between the two ethnic groups. The EDSS score alone was a significant predictor of cost. Conclusion. Similar costs between ethnic groups indicate that with regard to this MS service and geographical area, access to care was not affected by ethnicity.

Progression, symptoms and psychosocial concerns among those severely affected by multiple sclerosis: a mixed-methods cross-sectional study of Black Caribbean and White British people.

OBJECTIVE: Multiple sclerosis is now more common among minority ethnic groups in the UK but little is known about their experiences, especially in advanced stages. We examine disease progression, symptoms and psychosocial concerns among Black Caribbean (BC) and White British (WB) people severely affected by MS. DESIGN: Mixed methods study of 43 BC and 43 WB people with MS (PwMS) with an Expanded Disability Status Scale (EDSS) ≥6 involving data from in clinical records, face-to-face structured interviews and a nested-qualitative component. Progression Index (PI) and Multiple Sclerosis Severity Score (MSSS) were calculated. To control for selection bias, propensity scores were derived for each patient and adjusted for in the comparative statistical analysis; qualitative data were analysed using the framework approach. RESULTS: Median EDSS for both groups was (6.5; range: 6.0-9.0). Progression Index (PI) and Multiple Sclerosis Severity Score (MSSS) based on neurological assessment of current EDSS scores identified BC PwMS were more likely to have aggressive disease (PI F = 4.04, p = 0.048, MSSS F = 10.30, p<0.001). Patients' reports of the time required to reach levels of functional decline equivalent to different EDSS levels varied by group; EDSS 4: BC 2.7 years v/s WB 10.2 years (U = 258.50, p = 0.013), EDSS 6∶6.1 years BC v/s WB 12.7 years (U = 535.500, p = 0.011), EDSS 8: BC 8.7 years v/s WB 10.2 years. Both groups reported high symptom burden. BC PwMS were more cognitively impaired than WB PwMS (F = 9.65, p = 0.003). Thematic analysis of qualitative interviews provides correspondence with quantitative findings; more BC than WB PwMS referred to feelings of extreme frustration and unresolved loss/confusion associated with their rapidly advancing disease. The interviews also reveal the centrality, meanings and impact of common MS-related symptoms. CONCLUSIONS: Delays in diagnosis should be avoided and more frequent reviews may be justified by healthcare services. Culturally acceptable interventions to better support people who perceive MS as an assault on identity should be developed to help them achieve normalisation and enhance self-identity.

"It makes you feel that somebody is out there caring": a qualitative study of intervention and control participants' perceptions of the benefits of taking part in an evaluation of dignity therapy for people with advanced cancer.

CONTEXT: Participants in a Phase II randomized controlled trial of Dignity Therapy felt that the intervention had helped them; however, the processes underlying this are not known. OBJECTIVES: To explore intervention and control participants' perceptions of the benefits of taking part in an evaluation of Dignity Therapy within the frame of the underlying model of the intervention. METHODS: We interviewed 29 patients at one-week follow-up and 20 at four-week follow-up. We also interviewed nine family members of patients in the intervention group. We used the Framework approach to qualitative analysis. This comprised five stages: familiarization, identifying a thematic framework, indexing, charting, and mapping and interpretation. The analysis was both deductive (a priori themes from the model informing the content and therapeutic tone of the intervention) and inductive (from participants' views). RESULTS: There was support for five of the seven themes from the model underlying Dignity Therapy: "generativity," "continuity of self," "maintenance of pride," "hopefulness," and "care tenor." With the exception of generativity, all were evident in both groups. Prevalent emergent themes for the intervention group were "reminiscence" and "pseudo life review." "Making a contribution" was prevalent in the control group. CONCLUSION: Patients with advanced cancer and their families found that Dignity Therapy had helped them in many ways; however, patients in the control group sometimes perceived similar benefits from taking part in the study, highlighting elements of Dignity Therapy that are common to dignity conserving care.

'It makes me feel that I'm still relevant': a qualitative study of the views of nursing home residents on dignity therapy and taking part in a phase II randomised controlled trial of a palliative care psychotherapy.

BACKGROUND: Trials of dignity therapy (a palliative care psychotherapy) have shown self-reported benefits for participants from taking part, although more so in intervention than control groups. However, the sources of these benefits are unknown. AIM: The aim of this study was to explore and compare participants' views on taking part in a mixed methods phase II randomised controlled trial of dignity therapy. DESIGN: This was a qualitative study, using the framework approach to the analysis. SETTING/PARTICIPANTS: It involved residents, aged 65+, with no major cognitive impairment, living in one of 15 nursing/care homes in London, UK (49 residents at 1-week follow-up, 36 residents at 8-week follow-up). RESULTS: Residents' views were represented in nine themes, and three of these themes were evident only in the intervention group: views on the generativity document; generativity; and reminiscence. Six themes were evident in both groups: refocusing; making a contribution; interaction with the researcher or therapist; diversion; not helping with their problems; and cognitive impairment. Our findings support some of the proposed mechanisms of action for this palliative care intervention (pride, hopefulness, care tenor) but also draw attention to some of the potential problems of delivering the intervention. We show how residents could benefit from taking part in research, regardless of whether or not they receive the intended intervention. CONCLUSIONS: Dignity therapy is likely to be beneficial to some care home residents, albeit the small minority who have the desire and the capacity to engage in such an intervention. Whether or not dignity therapy helps distressed residents, and the most effective way of screening for those who might benefit from it, need to be determined.

Dignity therapy for older people in care homes: a qualitative study of the views of residents and recipients of 'generativity' documents.

AIM: To report the findings of a study exploring the views and experiences of care home resident's family on Dignity Therapy. BACKGROUND: As the proportion of older people dying in care homes increases, it is important to enhance their dignity, reduce distress at the end-of-life, and provide bereavement support to their families. Pilot studies show that hospice patients and care home residents feel Dignity Therapy had or would help their families; however, there are no qualitative studies of their views. DESIGN: Qualitative exploration. METHODS: Qualitative interviews were conducted between January 2009-March 2010 with 14 family members of care home residents who had received Dignity Therapy. The Framework approach to qualitative analysis was used. FINDINGS: Four categories are reported: views on the document: impact on residents; impact on family; and potential impact on care homes. While contact with the therapist provided much needed company for residents, Dignity Therapy helped residents reappraise aspects of their lives positively, while enjoying the opportunity to reminisce. Concerns focused on resident's anxiety over document content. Memory problems and perceived lack of distress in some residents were viewed as factors affecting delivery and impact of Dignity Therapy. Family discovered new information and were prompted to discuss the content with them. For bereaved family members, documents provided comfort during their grief. If made available to carers, documents could enhance care delivery in homes. CONCLUSION: Family members felt Dignity Therapy had helped them and the residents. Findings suggest that Dignity Therapy may be useful for enhancing the end-of-life experience for residents and their families.

Exploring the impact of dignity therapy on distressed patients with advanced cancer: three case studies.

BACKGROUND: Dignity therapy (DT) has been developed to help reduce distress experienced by people nearing the end of life; however, evaluations of this novel intervention have largely involved non-distressed samples. OBJECTIVE: The objective of this study was to explore in detail the impact of DT on distressed patients with advanced cancer. METHODS: We used a case study approach. Three patients with the highest levels of dignity-related distress who received DT were explored in depth. We collected quantitative and qualitative outcomes from patients in face-to-face interviews at baseline and at 1 and 4 weeks after completion of the intervention. We assessed dignity-related distress using the Patient Dignity Inventory. Patients rated the benefits of DT at completion of the intervention and at both follow-ups. We conducted qualitative interviews exploring experiences of DT with patients and with two recipients of generativity documents produced by patients. RESULTS: These patients were experiencing a wide range of major or overwhelming physical and psychosocial problems when they received the intervention, most of which would not be expected to be helped by DT. All felt that DT had helped them and had helped or would help their families; however, patients' concerns about their current situation made delivering the intervention challenging, and DT-relevant problems returned when a patients' condition deteriorated. CONCLUSIONS: The extent to which DT can help these patients and their families, either as a stand-alone therapy or as an adjunct to other therapies, needs to be determined in studies focussing on distressed patients, particularly those with problems likely to be helped by the therapy.

Providing end-of-life care in care homes for older people: a qualitative study of the views of care home staff and community nurses.

The study aimed to explore the views of care home staff (CHS) and community nurses (CNs) on providing end-of-life care (EOLC) in care homes. Participants were randomly selected and qualitative interviews conducted with 80 CHS and 10 CNs. Themes emerging from the data included the following: The meaning of EOLC; starting EOLC; dying in the care home; stress of providing EOLC; improving EOLC; and the role of the CN. CHS felt that planning for the end of life was important before residents reached the dying phase, which some found difficult to determine. Although CHS wished to avoid residents being transferred to hospital to die, they acknowledged that improvements in their skills and the resources available to them were needed to manage EOLC effectively. CNs were critical of the EOLC provided in some care homes, reporting tensions over their relationship with CHS. As the number of older people who die in care homes increases, there is a need to overcome these barriers to provide good EOLC.

Feasibility, acceptability and potential effectiveness of Dignity Therapy for older people in care homes: a phase II randomized controlled trial of a brief palliative care psychotherapy.

BACKGROUND: A pilot study of Dignity Therapy conducted with hospice patients reported high levels of self-reported benefits of the psychotherapy. AIM: To assess the feasibility, acceptability and potential effectiveness of Dignity Therapy to reduce distress in older people in care homes. DESIGN: A randomized controlled open-label trial (ISRCTN37589515). SETTING AND PARTICIPANTS: 60 residents aged 65+ with no major cognitive impairment living in care homes in London, UK. INTERVENTION: Dignity Therapy, a brief palliative care psychotherapy. OUTCOMES: Potential effectiveness (dignity-related distress, depression, hopefulness, quality of life at baseline and 1 and 8-week follow-up); acceptability (residents' views on self-reported benefits of Dignity Therapy/the Dignity Therapy study); and feasibility (time taken to deliver the intervention). RESULTS: We randomized 60/755 (8%) residents: 29 - control, 31 - intervention. We found no significant differences between groups on measures of potential effectiveness at any time. There was a reduction in dignity-related distress across both groups (p = 0.026). The intervention group outperformed the control group on all the acceptability items at both follow-ups. Effect sizes (Cohen's d) ranged from small (0.25) to large (0.85). These were significant for feeling that Dignity Therapy/the Dignity Therapy study had made their life more meaningful at 2-week follow-up (p = 0.04), and that it would help their families at both follow-ups (p = 0.02 and p = 0.01, respectively). Although it was feasible to deliver the intervention in this setting, it took longer to complete than anticipated. CONCLUSIONS: Although Dignity Therapy took longer to deliver than expected, this intervention may be a way of enhancing the end-of-life experiences of residents.

Implementing a quality improvement programme in palliative care in care homes: a qualitative study.

BACKGROUND: An increasing number of older people reach the end of life in care homes. The aim of this study is to explore the perceived benefits of, and barriers to, implementation of the Gold Standards Framework for Care Homes (GSFCH), a quality improvement programme in palliative care. METHODS: Nine care homes involved in the GSFCH took part. We conducted semi-structured interviews with nine care home managers, eight nurses, nine care assistants, eleven residents and seven of their family members. We used the Framework approach to qualitative analysis. The analysis was deductive based on the key tasks of the GSFCH, the 7Cs: communication, coordination, control of symptoms, continuity, continued learning, carer support, and care of the dying. This enabled us to consider benefits of, and barriers to, individual components of the programme, as well as of the programme as a whole. RESULTS: Perceived benefits of the GSFCH included: improved symptom control and team communication; finding helpful external support and expertise; increasing staff confidence; fostering residents' choice; and boosting the reputation of the home. Perceived barriers included: increased paperwork; lack of knowledge and understanding of end of life care; costs; and gaining the cooperation of GPs. Many of the tools and tasks in the GSFCH focus on improving communication. Participants described effective communication within the homes, and with external providers such as general practitioners and specialists in palliative care. However, many had experienced problems with general practitioners. Although staff described the benefits of supportive care registers, coding predicted stage of illness and advance care planning, which included improved communication, some felt the need for more experience of using these, and there were concerns about discussing death. CONCLUSIONS: Most of the barriers described by participants are relevant to other interventions to improve end of life care in care homes. There is a need to investigate the impact of quality improvement programmes in care homes, such as the GSFCH, on a wider range of outcomes for residents and their families, and to monitor the sustainability of any resulting improvements. It is also important to explore the impact of the different components of these complex interventions.

A novel approach to enhancing hope in patients with advanced cancer: a randomised phase II trial of dignity therapy.

MAIN OBJECTIVE: To assess the ability of dignity therapy to reduce distress in advanced cancer patients. DESIGN: A phase II open-label trial. SETTING: Two UK National Health Service trusts. PARTICIPANTS: 45 adults with advanced cancer. INTERVENTION: Dignity therapy: a brief palliative care psychotherapy. METHODS: Participants were randomly allocated to receive the intervention plus standard care or standard care only (control group). Outcomes were collected at baseline and at 1- and 4-week follow-up. MAIN OUTCOME MEASURES: The primary outcome was dignity-related distress (Palliative Dignity Inventory). Secondary outcomes were hope, anxiety and depression, quality of life, palliative-related outcomes, and self-reported study benefits. RESULTS: 45/188 (24%) patients responded. 27/45 (60%) participants remained at 1-week and 20/45 (44%) at 4-week follow-up. Baseline levels of distress were low. Groups did not differ in dignity-related distress at any time. An effect on only one secondary outcome was found: the intervention group reported more hope than the control group at both follow-ups. Effect sizes were medium (partial η(2)=0.20 and 0.15) and the difference was statistically significant at 1-week follow-up (difference in adjusted means 2.55; 95% CI -4.73 to 0.36; p=0.02). The intervention group was more positive than the control group on all the self-reported benefits ratings. Effect sizes (Cohen's d) ranged from 1.34 for feeling that dignity therapy had helped to 0.31 for increasing will to live. CONCLUSIONS: The effects of dignity therapy on people with advanced cancer are encouraging. Further investigation is warranted focusing on distressed patients and those earlier in the palliative care trajectory. TRIAL REGISTER NUMBER: ISRCTN29868352.