RESUMO
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.
Assuntos
População Negra/psicologia , Neoplasias/psicologia , Cuidados Paliativos/normas , Projetos de Pesquisa/normas , População Branca/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Atitude do Pessoal de Saúde , Comparação Transcultural , Feminino , Humanos , Londres , Masculino , Pessoa de Meia-Idade , Neoplasias/etnologia , Cuidados Paliativos/ética , Cuidados Paliativos/psicologia , Pesquisa Qualitativa , Relações Pesquisador-Sujeito/psicologia , Confiança/psicologia , Populações Vulneráveis , Índias Ocidentais/etnologiaRESUMO
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.