Work-Aged Family Caregivers’ Experiences in Severe Neurological Diseases and Sustainability in Future Local Healthcare Workforce: A Qualitative Metasynthesis

Abstract

Family caregivers play an important role as an unpaid part in the health care workforce in the communities. Without family caregivers’ contribution, sustainability in the health care workforce may be severely challenged. This metasynthesis identifies the experiences of work-aged family caregivers, related to care for persons living with Amyotrophic Lateral Sclerosis, Multiple Sclerosis, Huntington’s Disease and Parkinson’s Disease to uphold a sustainable health care workforce. Eleven original qualitative studies concerning family caregiving in severe, degenerative neurological diseases were included and analysed based on an elaborated, four steps strategy. The results revealed the three following themes: The practical and emotional impact on family caregiver, Balancing own needs and family obligations and A price to pay for family caregivers providing long-term care. These findings implicate that family caregivers’ contribution depends on tailored information from the health care regarding the disease and the development of the disease. Work-aged family caregivers’ needs should be clarified and valued, regarding their own personal time, economic situation, social activity, work, and family situation. The health authorities should discuss the financial framework for family caregivers’ contribution and role. It is further necessary that the health care workforce invites to dialogue about prerequisites for health care and how health care tasks could be distributed to uphold a sustainable health care both for the work force and the work-aged family caregivers in the future.

Keywords

• family caregiver role
• health care workforce
• metasynthesis
• severe degenerative neurological diseases
• sustainability