Preparedness, resilience and unmet needs of informal caregivers of advanced cancer patients in a Regional Mission Hospital in Kenya: Qualitative Study

BMC Palliative Care (2023) 22:16 Too et al. BMC Palliative Care https://doi.org/10.1186/s12904-022-01048-6 Open Access RESEARCH Preparedness, resilience and unmet needs of informal caregivers of advanced cancer patients in a Regional Mission Hospital in Kenya: Qualitative Study Wesley Too1*, Faith Lelei2, Mary Adam2 and Pete Halestrap2 Abstract Background Cancer is the third highest cause of death in Kenya. Eighty percent of cancer cases arrive at advanced stages, when there is nothing that can be done to cure them, and palliative care is the best alternative. Although the majority of end-of-life care in Kenya is provided at home, little is known about the caregivers’ preparedness, resilience and continued unmet needs. The goal of this qualitative study was to explore caregivers’ perceived preparedness, resilience and continued unmet needs in their caregiving role to patients with advanced stages of cancer. Methods A purposive sampling method was used to identify and recruit twelve informal, home-based caregivers of patients with advanced cancer from Kijabe Palliative Clinic data base. Interviews were conducted in patients’ homes. The data was analyzed using interpretive phenomenological analysis approach. Ethical considerations were observed. Participants were kept anonymous and confidentiality. Results Competing tasks, lack of preparedness in handling end-of-life care for patients in advanced stages of cancer were the main concerns. Continued unmet needs and financial stresses, and vulnerability for female caregivers all contributed to increased caregiver burden in this study. Caregivers were however determined and resilient amidst challenges that faced them, they exhibited hope against hopelessness. Some caregivers were vulnerable and faced potential for abuse following anticipated loss of their family member exacerbated psychosocial stress and needs Conclusion Informal caregivers had common unmet needs related to caring for their advanced cancer patients. Whilst family caregivers had huge caregiver burden, insurmountable practical challenges related to role overload and competing tasks, they remained resilient though unprepared in giving end of life care. Recommendations Caregivers should also be examined, prepared, and supported during clinic reviews. More research is needed on the use of telephones for caregiver follow-up, the impact of introducing caregiver-targeted screening tools on caregiver quality of life and their impact on enhancing caregiver well-being in order to prepare & support them adequately for the caregiving role. Keywords Informal caregiver, Advanced cancer, Family caregiver, Qualitative, Experiences, End-of-life *Correspondence: Wesley Too ; 1 Aga Khan University, University Center, P O Box 30270‑00100, 5th Floor, SONAM, South Wing, 3rd Parklands Avenue, Off Limuru Road, Nairobi, Kenya 2 AIC Kijabe Mission Hospital, Nairobi/Naivasha Rd, Karuri, P O Box 20‑00220, Nairobi, Kijabe, Kenya © The Author(s) 2023. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativeco mmons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. Too et al. BMC Palliative Care (2023) 22:16 Introduction Informal caregivers have been known to shoulder responsibilities of caring for patients with advanced cancer in sub-Saharan Africa due to paucity of institutional facilities. Previous studies show that factors associated with caregiver burden include previous hospitalisation of the care recipient and perceived dysfunction in patients’ activities of daily living [1]. Cancer care has shifted from in-patient to ambulatory and home settings as a result of changes in the health-care system. This transition has also resulted in more family involvement in the day-to-day care of the cancer patient. Patients with cancer require a variety of services, including disease and treatment monitoring, symptom management, medication administration, emotional support, personal care assistance, and instrument care assistance [2]. Informal caregivers may be unprepared to take on these responsibilities, which necessitates knowledge of the condition and its treatment, as well as training in technical and caring skills. In addition, caregiving must be balanced against pre-existing roles and duties [3]. Furthermore, informal caregivers may require coaching and emotional support as a result of their own emotional reactions to the patients’ diagnosis and prognosis [4]. It is widely recognized that informal caregivers are not adequately prepared to handle end-of life-care for patients with advanced cancer [5, 6]. While caregivers are reported to be resilient, they face complex intricacies which can negatively impact their health in various domains; physical, psychological, emotional and spiritual. The impact manifests in various domains; physical, psychosocial and emotional aspects of their lives. Resilience among many informal caregivers of patients with advanced cancer has been suggested as a primary component in their ability to withstand psychological strain and function effectively in the task despite carrying a heavy load of caregiving responsibilities [3, 7]. Whilst studies examining resiliency and preparedness of informal caregivers of advanced cancer patients reported higher resilience associated with higher caregiver preparedness, higher readiness for surrogate decision-making and lower anxiety and depressive symptoms [3, 8, 9], there is less insight into Kenyan experiences of informal caregivers of advanced cancer patients. This is particularly important since studies have shown that resilience may be critical to informal caregivers’ abilities to manage stress, be effective sources of support to patients, and feel ready to make future medical decisions on behalf of patients [3, 7]. Studies have shown that caring for advanced cancer patients might have a negative impact on one’s health [1, 10, 11]. Because of the intensive nature of illness and Page 2 of 11 treatment, cancer informal caregivers confront particular obstacles, which raises their ris (...truncated)