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Objective: Happiness is a central component in quality of life but little is known about its meanings among people living with an advanced disease and those from diverse communities. This study explores and compares, for the first time, the centrality and interpretations of happiness across two cultural groups living with advanced cancer., Methods: Semi-structured interviews among 26 Black Caribbean and 19 White British cancer patients were conducted in hospital and home settings., Results: Thirty eight participants volunteered views on happiness, which were related to four main themes: empty lives, a theme associated with lives devoid of contentment; happiness and the physical form principally, associated with the absence of distressing symptoms; 'love and affection' associated with family and friends; and 'realising personal meaning in life', most common among the Black Caribbean participants and related to God, prayer and the sacred world. The presence of cancer pain even when refractory did not preclude manifestations of happiness in this domain., Conclusions: We identified that happiness was central to many patients' quality of life during advanced cancer. Moreover, happiness was multidimensional and at times culturally patterned. We recommend that health and social care professionals increase their awareness and skills-set in relation to exploring happiness. Further, we recommend greater efforts are invested in cultural relativism to service the physical, psychological, social and spiritual issues that contribute towards moments of happiness among diverse communities., (Copyright © 2012 John Wiley & Sons, Ltd.)

Background: Calls for better end-of-life care for advanced chronic obstructive pulmonary disease (COPD) reflect the large number who die from the disease and their considerable unmet needs., Aim: To determine palliative care needs in advanced COPD., Design: Cross-sectional interview study in patients' homes using structured questionnaires generated from 44 south London general practices., Method: One hundred and sixty-three (61% response) patients were interviewed, mean age 72 years, 50% female, with diagnosis of COPD and at least two of: forced expiratory volume in the first second (FEV(1)) <40% predicted, hospital admissions or acute severe exacerbations with COPD, long-term oxygen therapy, cor pulmonale, use of oral steroids, and being housebound. Patients with advanced cancer, severe alcohol-related or mental health problems, or learning difficulties, were excluded; 145 patients were included in the analysis., Results: One hundred and twenty-eight (88%) participants reported shortness of breath most days/every day, 45% were housebound, 75% had a carer. Medical records indicated that participants were at least as severe as non-participants. Eighty-two (57%) had severe breathlessness; 134 (92%) said breathlessness was their most important problem; 31 (21%) were on suboptimal treatment; 42 (30%) who were severely affected had not been admitted to hospital in the previous 2 years; 86 of 102 who had been admitted would want admission again if unwell to the same extent. None expressed existential concerns and few discussed need in terms of end-of-life care, despite severe breathlessness and impairment., Conclusion: Needs in advanced COPD were considerable, with many reporting severe intractable breathlessness. Palliation of breathlessness was a priority, but discussion of need was seldom in terms of 'end-of-life care'.

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 reconceptualize vulnerability using the domains identified in this study and consider the research context and interviewers' skills.

There is evidence that religion and spirituality affect psychosocial adjustment to cancer. However, little is known about the perceptions and meanings of religion and spirituality among Black and minority ethnic groups living with cancer in the UK. We conducted semi-structured interviews with 26 Black Caribbean and 19 White British patients living in South London boroughs with advanced cancer to explore how religion and spirituality influenced their self-reported cancer experience. Twenty-five Black Caribbean patients and 13/19 White British patients volunteered views on the place of religion or God in their life. Spirituality was rarely mentioned. Christianity was the only religion referred to. Strength of religious belief appeared to be more pronounced among Black Caribbean patients. Three main themes emerged from patients' accounts: the ways in which patients believed religion and belief in God helped them comprehend cancer; how they felt their faith and the emotional and practical support provided by church communities assisted them to live with the physical and psychological effects of their illness and its progression; and Black Caribbean patients identified the ways in which the experience of cancer promoted religious identity. We identified that patients from both ethnic groups appeared to derive benefit from their religious faith and belief in God. However, the manner in which these were understood and expressed in relation to their cancer was culturally shaped. We recommend that when health and social care professionals perform an assessment interview with patients from different cultural backgrounds to their own, opportunities are made for them to express information about their illness that may include religious and spiritual beliefs since these may alter perceptions of their illness and symptoms and thereby influence treatment decisions.

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.

Aim: This study sought to assess symptom severity and prevalence in people severely affected by multiple sclerosis (MS)., Methods: We collected data on symptoms and problems of patients as self-reported to trained interviewers on standardized questionnaires (including the Palliative Outcome Scale MS symptom checklist, POS-MSS)., Results: 52 patients were included, mean age 53 years; 26 had secondary progressive MS, 23 had primary progressive MS, three had other forms; 32/52 were unable to walk independently. Patients reported a mean of nine (median = 8.5, mode = 12) symptoms. Six symptoms affected more than 50% of patients: problems using legs, problems using arms, fatigue/lack of energy, spasms, pain, and feeling sleepy. Higher levels of disability were correlated with greater symptom severity for nine symptoms (Spearman rho ranged 0.28-0.56, p < 0.05)., Conclusion: Many symptoms in people severely affected by MS are as highly prevalent and severe as those experienced by patients with advanced cancer. Increased disability is associated with increased severity for some symptoms.