Cancer carers’ constructions of caregiving during the COVID-19 pandemic: A study on Aotearoa- New Zealand

Abstract

<p><strong>Background. Cancer is an illness that not only affects people who are diagnosed but also informal cancer carers. The COVID-19 pandemic has been found to decrease carers’ access to formal supports, such as healthcare services, and informal supports, such as family and friends. In turn, decreased supports due to COVID-19 regulations has also been associated with an increased engagement in care provision tasks by carers, such as hygiene management and at home cancer treatments, side effect management and recovery. This increase in care tasks has also been related to carer’s increased psychological distress and caregiver burden as well as decreased quality of life. The current body of research on cancer caring during COVID-19 is predominantly quantitative based, with limited qualitative studies. Furthermore, there is no research in Aotearoa-New Zealand that explores how carers make meaning of their experiences as cancer carers post-COVID-19.</strong></p><p>Aims. This study aimed to explore how cancer carers in Aotearoa-New Zealand constructed their caregiving amidst COVID-19. It also aimed to explore how carers negotiated supports for themselves and how these changed across the COVID-19 pandemic.</p><p>Methods. This qualitative study adopted a social constructionist epistemology and used positioning theory as the theoretical standpoint. For cancer carers to be eligible for this study: carers and person with cancer must be above 18 years of age, self-identify as a cancer carer, and the cancer diagnosis or treatment must have begun or occurred after March 2020. Semi-structured interviews were conducted with eight participants who were recruited through community cancer organisations and social media. The data was analysed using thematic analysis.</p><p>Results. Four carer subject positions across the cancer narratives were identified: The Advocate, The Intimate Carer, The Social carer, and The Focused Carer. The advocate found that carers were actively involved in interactions with healthcare professionals and often had to push for their person with cancer to receive adequate support. This was attributed by carers to the healthcare system being stretched thin due to COVID-19 related demands. The Intimate Carer identity was constructed around carers positioning themselves as being the main source of physical and emotional support in private settings such as homes and social settings. This identity was intensified due to COVID-19 isolating carers from accessing support from healthcare professionals, family members and friends. This included taking on supporting the person with cancer’s re-integration into society, increasing hygiene maintenance at home and monitoring medical management. In The Social Carer, there were two constructions. The dominant construction revolved around carers feeling invisible in their social interactions. The second construction revolved around the positive impact of a few social interactions that acknowledged the carer. The Focused Carer revolved around the impact of the caring experience being constructed around the person with 2 cancer. It also explored the carers construction of the relationship with the carer being stronger and the influence this relationship had the construction of the carer’s self-identity.</p><p>Conclusion. Throughout the course of the cancer journey amidst the COVID-19 pandemic, cancer carers took on multiple identities, which were fluid within their accounts, with different identities being taken on at different stages of the cancer caring journey. The findings from this study have implications for healthcare professionals and community care organisations as it highlights the way in which cancer caring has been affected by COVID-19.</p>