Peter Speck

Spiritual needs in health care

May be distinct from religious ones and are integral to palliative care

Cultural meanings of pain: a qualitative study of Black Caribbean and White British patients with advanced cancer

Pain is a common cancer-related symptom, but little research has been conducted that explores the meanings of this symptom across different ethnic groups. This study involved qualitative interviews to explore and compare the meanings of pain among 26 Black Caribbean and 19 White patients with advanced cancer. Patients were recruited from oncology outpatient clinics, a lung clinic and palliative care teams. Interview transcripts were analysed using the framework approach. A total of 23/26 Black Caribbean and 15/19 White patients reported cancer-related pain. Accounts of Black Caribbean and White patients identified pain as a ‘challenge’ that needed to be mastered by the individual, not necessarily by drugs and identified pain as an ‘enemy’ that represented an unfair attack. Two further meanings of pain emerged from Black Caribbean patients’ accounts: pain as a ‘test of faith’ that referred to confirmation and strengthening of religious belief, and pain as a ‘punishment’ that was associated with wrongdoing. These meanings influenced the extent patients were able to accommodate their distress. Pain assessment needs to consider the patients’ narratives that include the meanings they attribute to this symptom, and which may be governed by culture.

Editorial: Spiritual needs in health care: May be distinct from religious ones and integral to palliative care

May be distinct from religious ones and are integral to palliative care

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.

MORECare research methods guidance development: Recommendations for ethical issues in palliative and end-of-life care research

Background: There is little guidance on the particular ethical concerns that research raises with a palliative care population. Aim: To present the process and outcomes of a workshop and consensus exercise on agreed best practice to accommodate ethical issues in research on palliative care. Design: Consultation workshop using the MORECare Transparent Expert Consultation approach. Prior to workshops, participants were sent overviews of ethical issues in palliative care. Following the workshop, nominal group techniques were used to produce candidate recommendations. These were rated online by participating experts. Descriptive statistics were used to analyse agreement and consensus. Narrative comments were collated. Setting/participants: Experts in ethical issues and palliative care research were invited to the Cicely Saunders Institute in London. They included senior researchers, service providers, commissioners, researchers, members of ethics committees and policy makers. Results: The workshop comprised 28 participants. A total of 16 recommendations were developed. There was high agreement on the issue of research participation and high to moderate agreement on applications to research ethics committees. The recommendations on obtaining and maintaining consent from patients and families were the most contentious. Nine recommendations were refined on the basis of the comments from the online consultation. Conclusions: The culture surrounding palliative care research needs to change by fostering collaborative approaches between all those involved in the research process. Changes to the legal framework governing the research process are required to enhance the ethical conduct of research in palliative care. The recommendations are relevant to all areas of research involving vulnerable adults.

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.

A Psychometric Evaluation of Measures of Spirituality Validated in Culturally Diverse Palliative Care Populations

CONTEXT Despite the need to accurately measure spiritual outcomes in diverse palliative care populations, little attention has been paid to the properties of the tools currently in use. OBJECTIVES This systematic review aimed to appraise the psychometric properties, multifaith appropriateness, and completion time of spiritual outcome measures validated in multicultural advanced cancer, HIV, or palliative care populations. METHODS Eight databases were searched to identify relevant validation and research studies. A comprehensive search strategy included search terms in three categories: palliative care, spirituality, and outcome measurement. Inclusion criteria were: validated in advanced cancer, HIV, or palliative care populations and in an ethnically diverse context. Included tools were evaluated with respect to psychometric properties (validity, reproducibility, responsiveness, and interpretability), multifaith appropriateness, and time to complete. RESULTS A total of 191 articles were identified, yielding 85 tools. Twenty-six tools (representing four families of measures and five individual tools) met the inclusion criteria. Twenty-four tools demonstrated good content validity and 12 demonstrated adequate internal consistency. Only eight tools demonstrated adequate construct validity, usually because specific hypotheses were not stated and tested. Seven tools demonstrated adequate test-retest reliability; two tools showed adequate responsiveness, and two met the interpretability criterion. Data on the religious faith of the population of validation were available for 11 tools; of these, eight were tested in multifaith populations. CONCLUSION Results suggest that, at present, the McGill Quality of Life Questionnaire, the Measuring the Quality of Life of Seriously Ill Patients Questionnaire, and the Palliative Outcome Scale are the most appropriate multidimensional measures containing spiritual items for use in multicultural palliative care populations. However, none of these measures score perfectly on all psychometric criteria, and their multifaith appropriateness requires further testing.

Vulnerability in palliative care research: findings from a qualitative study of black Caribbean and white British patients with advanced cancer

Introduction: Vulnerability is a poorly understood concept in research ethics, often aligned to autonomy and consent. A recent addition to the literature represents a taxonomy of vulnerability developed by Kipnis, but this refers to the conduct of clinical trials rather than qualitative research, which may raise different issues. Aim: To examine issues of vulnerability in cancer and palliative care research obtained through qualitative interviews. Method: Secondary analysis of qualitative data from 26 black Caribbean and 19 white British patients with advanced cancer. Results: Four domains of vulnerability derived from Kipnis’s taxonomy were identified and included: (i) communicative vulnerability, represented by participants impaired in their ability to communicate because of distressing symptoms; (ii) institutional vulnerability, which referred to participants who existed under the authority of others—for example, in hospital; (iii) deferential vulnerability, which included participants who were subject to the informal authority or the independent interests of others; (iv) medical vulnerability, which referred to participants with distressing medical conditions; and (v) social vulnerability, which included participants considered to belong to an undervalued social group. Participants from both ethnic groups populated all these domains, but those who were black Caribbean were more present among the socially vulnerable. Conclusions: Current classifications of vulnerability require reinterpretation when applied to qualitative research at the end of life. We recommend that researchers and research ethics committees reconceptualise vulnerability using the domains identified in this study and consider the research context and interviewers’ skills.

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.

‘Peace’ and ‘life worthwhile’ as measures of spiritual well-being in African palliative care: a mixed-methods study

BackgroundPatients with incurable, progressive disease receiving palliative care in sub-Saharan Africa experience high levels of spiritual distress with a detrimental impact on their quality of life. Locally validated measurement tools are needed to identify patients’ spiritual needs and evaluate and improve spiritual care, but up to now such tools have been lacking in Africa. The African Palliative Care Association (APCA) African Palliative Outcome Scale (POS) contains two items relating to peace and life worthwhile. We aimed to determine the content and construct validity of these items as measures of spiritual wellbeing in African palliative care populations.MethodsThe study was conducted at five palliative care services, four in South Africa and one in Uganda. The mixed-methods study design involved: (1) cognitive interviews with 72 patients, analysed thematically to explore the items’ content validity, and (2) quantitative data collection (n = 285 patients) using the POS and the Spirit 8 to assess construct validity.Results(1) Peace was interpreted according to the themes ‘perception of self and world’, ‘relationship to others’, ‘spiritual beliefs’ and ‘health and healthcare’. Life worthwhile was interpreted in relation to ‘perception of self and world’, ‘relationship to others’ and ‘identity’. (2) Conceptual convergence and divergence were also evident in the quantitative data: there was moderate correlation between peace and Spirit 8 spiritual well-being (r = 0.46), but little correlation between life worthwhile and Spirit 8 spiritual well-being (r = 0.18) (both p < 0.001). Correlations with Spirit 8 items were weak to moderate.ConclusionsFindings demonstrate the utility of POS items peace and life worthwhile as distinct but related measures of spiritual well-being in African palliative care. Peace and life worthwhile are brief and simple enough to be integrated into routine practice and can be used to measure this important but neglected outcome in this population.