Cassie Goddard

Advanced care planning in care homes for older people: a qualitative study of the views of care staff and families

OBJECTIVE to explore views on advance care planning in care homes for older people. DESIGN qualitative exploration of views from care home staff and the family of residents in care homes for older people. SETTING all care homes for the elderly in two London Boroughs. PARTICIPANTS staff (care managers, nurses and care assistants), community nurses and families. METHODS individual semi-structured interviews. RESULTS themes of the analysis: (i) BENEFITS staff and family revealed positive opinions towards advance care planning. Staff felt it provided choice for residents and encouraged better planning. (ii) Barriers: staff and families perceived residents as reluctant to discuss advance care planning. Some care assistants were reluctant to be involved. Furthermore, families and staff reported prevalence of dementia among residents as another barrier. Nurses and care managers identified both family involvement and unforeseen medical circumstances as problematic. (iii) Facilitators: (a) early initiation of discussions (b) family involvement to establish preferences (c) residents and staff being well-known to each other and (d) staff training, were perceived to facilitate ACP. CONCLUSIONS overall, staff and families support the concept of ACP. Methods to overcome the identified barriers are required to embed ACP within end of life care in care homes.

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.

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 η2=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 (Cohens 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.

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.

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 residents 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 residents 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.

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 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.

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

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.

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.

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

BackgroundIllness 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.MethodsCross 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.Results15 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.ConclusionOur 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.