A qualitative study of bereaved family caregivers: feeling of security, facilitators and barriers for rural home care and death for persons with advanced cancer

Abstract

Background For cancer patients and their family, an important factor that determines the choice to die at home is the caregivers’ feeling of security when caring for the patient at home. Support to caregivers from healthcare professionals is important for the feeling of security. In rural areas, long distances and variable infrastructure may influence on access to healthcare services. This study explored factors that determined the security of caregivers of patients with advanced cancer who cared for the patients at home at the end of life in the rural region of Sogn og Fjordane in Norway, and what factors that facilitated home death. Methods A qualitative study using semi-structured in-depth interviews with bereaved with experience from caring for cancer patients at home at the end of life was performed. Meaning units were extracted from the transcribed interviews and divided into categories and subcategories using Kvale and Brinkmann’s qualitative method for analysis. Results Ten bereaved caregivers from nine families where recruited. Five had lived together with the deceased. Three main categories of factors contributing to security emerged from the analysis: “Personal factors”, “Healthcare professionals” and “Organization” of healthcare. Healthcare professionals and the organization of healthcare services contributed most to the feeling of security. Conclusion Good competence in palliative care among healthcare professionals caring for patients with advanced cancer at home and well- organized palliative care services with defined responsibilities provided security to caregivers caring for advanced cancer patients at home in Sogn og Fjordane.

Understanding and Supporting Informal Cancer Caregivers

“…The schedule of health care service was identified as a significant institutional factor. In recent qualitative studies, caregivers expressed that they felt distressed if professional support was not available in time for managing the deterioration of the patient [ 11 ••, 92 ]. Poorly organized home care services caused a sense of insecurity in caregivers [ 92 ].…”

“…In recent qualitative studies, caregivers expressed that they felt distressed if professional support was not available in time for managing the deterioration of the patient [ 11 ••, 92 ]. Poorly organized home care services caused a sense of insecurity in caregivers [ 92 ]. Long waiting times and lack of a comfortable environment during clinic visits can amplify unpleasant caregiver emotions [ 93 ].…”

“…Inconvenient transportation and unbalanced geographical distribution of medical resources in the community are barriers for obtaining professional and non-professional support, which would increase burden and sense of insecurity [ 11 ••, 92 , 95 ]. Financial and instrumental support from non-governmental organizations in the community (e.g., churches, charities, and philanthropies) can partially alleviate economic burden and practical issues of caregivers [ 11 ••, 96 , 97 ].…”

“…Governments of high-income countries such as Australia [ 97 , 98 ], Canada [ 96 , 99 ], and Norway [ 92 ] can provide financial compensation for informal caregiving, that can attenuate the financial difficulties of cancer patients and caregivers. However, caregivers may experience undesired anxiety or insecurity if an application for governmental compensation is cumbersome and slowly processed [ 92 ]. Caregivers in low-income countries usually face financial and resource constrains due to the lack of support from the government [ 11 ••, 23 , 100 ].…”

Life-and-Death Attitude and Its Formation Process and End-of-Life Care Expectations Among the Elderly Under Traditional Chinese Culture: A Qualitative Study

“…Most existing researches have the following characteristics. First, the research objects are mostly concentrated in patients with a certain disease such as cancer, Alzheimer's disease and so on (Boyd et al, 2019) or their care groups (Barlund et al, 2021), while few studies have been conducted on the relatively healthy elderly. Second, the research contents are mostly to explore the nursing mode (Fuoto & Turner, 2019) or preference for dying places (Johnston et al, 2020;Schou-Andersen et al, 2016), and there is a lack of research that combines the expectations of end-oflife care with life-and-death attitudes.…”