Background: People are living longer with chronic life-limiting illnesses such as cancer. Much is expected of lay cancer carers with the shift of complex non-acute care to the community and the pressures this can place on family relationships. The lay caregiving role does not appeal to all, yet willingness to care is often expected by others including health professionals. Carers who feel reluctant but committed to the role may experience adverse consequences. Reluctance to care is under-investigated, particularly in the cancer context, and its indicators may include a poor carer-patient relationship, perceived lack of choice and lifestyle disruption. Existing theories of caregiving do not adequately explain reluctance to care, and the concept remains under-developed. The assumptions underpinning this study are that: some cancer carers are reluctant to care, some carers may be reluctant toward specific aspects of the caregiving role or at different times during the cancer trajectory, and some reluctant carers will not want to reveal or discuss their unwillingness. Aim: The aim of the study was to gain a clearer understanding of lay carers’ reluctance to care for patients with recurrent cancer. Methods: A mixed methods design was used. In Phase I, data provided by a consecutive sample of carers (N = 98) of cancer patients corresponding to the patients’ final year were analysed to explore the context in which reluctance to care might exist or develop, and focusing on differences by spousal relationship and by gender in anxiety and depression, awareness of the stage of cancer, perceived social support, and perceived burden. In Phase II, a purposive sample of carers of patients with recurrent cancer (N = 16) were interviewed in-depth, using open-ended questions to generate qualitative data regarding their perceptions and experiences of caregiving and reluctance to care. Complementary data were obtained from a purposive sample of health professionals who interact with cancer carers (N = 13). The interview transcripts were analysed qualitatively to identify patterns and themes which would provide insights into the dimensions of reluctance to care. Results: In Phase I, spouses perceived greater family support but caregiving had a greater negative impact on their daily activities and social interaction. Non-spouses were more anxious than spouses, but reported greater social support, and less negative impact on their finances, daily schedule and health. Female carers were more anxious and depressed than males, who reported less burden and greater social support. Awareness of the stage of cancer was positively but weakly correlated with anxiety and depression. In Phase II, reluctance to care was experienced by both spouses and non-spouses and was not gender specific. Carers and health professionals held diverging perceptions and expectations of the lay caregiving role. Caregiving was an obligatory but invisible role and for some carers it led to exhaustion due to a lack of role boundaries. Carers were faced with forced choices. The lay caregiving role seemed to come as a non-negotiable package of expectations which gave carers the autonomy to accept their role rather than the choice to refuse it. Contextual factors which seem conducive to reluctance were overshadowed by carers’ commitment to the role, which suggests that their preferences were a lower priority despite the personal cost. There was indirect evidence of reluctance in others: family members distanced themselves from the caregiving situation, and health professionals were distanced from carers by their patient-centredness. Conclusions: This study has identified three fundamental dimensions of reluctance to care: the invisibility of the caregiving role, its lack of boundaries and its forced choices. Caregiving is often a sacrificial rather than reciprocal role, but reluctance is seen as an abnormal rather than realistic response to abnormal role expectations. The findings were limited by the extent to which carers disclosed reluctance and the extent to which reluctant carers remained in the role. As a result, reluctance to care may have been underestimated. Measuring this latent and taboo topic is likely to remain a challenge as the concept of reluctance to care continues to evolve. This study has established the importance of ongoing work on a topic which cannot remain hidden as the need for lay cancer care continues to expand.
| Identifer | oai:union.ndltd.org:ADTP/279243 |
| Creators | Letitia Burridge |
| Source Sets | Australiasian Digital Theses Program |
| Detected Language | English |
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