Difficulties Caring for Terminally Cancer Patients at Home : Family Caregivers’ and Homecare Providers’ Perspectives

Abstract

Abstract

Context：In Japan the incidence of many types of cancer is increasing and due to earlier discharges from the hospital, homecare needs are also increasing. End-of-life homecare is a recent trend；cancer patients may feel very burdened knowing their families are exhausted and anxious attempting to provide their homecare. However, there is no research about what types of difficulties the family caregivers have in managing patients at home.

Objective：The purpose of this study was to identify the difficulties encountering family caregivers in providing home-based terminal care for cancer patients.

Methods：Semi-structured interviews were conducted with seven family caregivers and five homecare providers（N=12）to identify the difficulties providing home care. Data were analyzed quantitatively using content analysis.

Results：The difficulties for caregivers consisted of two aspects and 15 categories. The first aspect regarded the relationship between patients and family；seven categories were identified：（1）difficulty managing symptoms and pain；（2）experiencing family's spiritual pain；（3）increasing caregiver burden；（4）caregiver’s psychological burden；（5）caregiver’s physical burden；（6）disruption of balance between caregiving and work and（7）relationship disharmony between caregiver and relatives. The second aspect regarded homecare providers and services；eight categories were identified as difficulties with：（1）beginning homecare in a way that the patient feels relief；；（2）creating a committed relationship with hospital-based doctor：（3）creating a good relationship with home-based doctor；（4）receiving sufficient support by home-based doctor；（5）creating a good relationship with home-visiting nurse；（6）complaints and confusion by home-helper：（7）receiving good home services and（8）anxiety about patient's funeral.

Conclusion：This study identified the difficulties facing family caregivers while providing home-based terminal care of cancer patients. The findings are useful for home-care providers to assess care needs for family caregivers who care for the cancer patient at the end of life.