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

Anne Sæle Barlund,Anne-Tove Brenne,Beate André,Kari Sand

doi:10.1186/s12904-020-00705-y

Anne Sæle Barlund, Anne-Tove Brenne + Show 2 more

Open Access

https://doi.org/10.1186/s12904-020-00705-y

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Abstract

BackgroundFor 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.MethodsA 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.ResultsTen 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.ConclusionGood 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.

Highlights

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
What factors made the caregivers feel secure when they cared for the patient with advanced cancer at home in the rural region of Sogn og Fjordane?
Three main categories of factors were identified that made the caregivers feel secure when they cared for the patient with advanced cancer at home, or the opposite, lack of these factors made them feel insecure: Personal factors, healthcare professional factors and organizational factors (Table 4)

Summary

Introduction

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. To be able to fulfil home death, support from caregivers is important [2] They know the patient well and have the experience of how to help the individual. Effective communication between healthcare professionals and caregivers empowers caregivers to fulfil their responsibilities and provide security to enable home care and home death [13]. This facilitates a smooth transition of care and allows the families to prepare for end- of- life phase and death [14]

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