Listening to families with a person with neurodegenerative disease talk about their quality of life: integrating quantitative and qualitative approaches

Abstract

Background The diagnosis of a neurodegenerative disease (ND) produces profound changes in the quality of life of the affected families. Despite the vital importance of these processes, the scientific literature has addressed this topic almost exclusively relating to the main caregiver or using limited approaches. Thus, the main objective of this research is to achieve a deeper understanding of the quality of family life of people with a neurodegenerative disease, following a mixed-method approach that combines quantitative and qualitative methodology. Methods The quantitative instrument was the Spanish version of the Family Quality of Life Survey-Neurodegenerative Disease (FQOLS-ND), which was completed by 300 participating families. The qualitative methodology was used in two focus groups with family caregivers, with a total of 21 participants. Results On the one hand, confirmation of the dimensional structure of the scale in the focus groups was obtained and, on the other hand, the results of family quality of life in attainment and satisfaction were shown to be high for Family Relations and Careers and Planning for Careers and low for Support from Services and Leisure and Recreation. Conclusions The results of this study, through the combination of quantitative and qualitative information, helps to identify key issues to optimize services that respond to the priority needs of families.

Epidemiological Impact of Neurodegenerative Diseases in the Rural Spanish-Portuguese Cross-Border Region

“…This is compounded by poor accessibility, both physical (transport and communications) and telematic (internet), and access to social services. The family is one of the main support service providers for the person with NDD [41,42]. Achieving comprehensive social and health care in rural areas requires adequate coordination and planning of health and social services.…”

Current Advances of Plant-Based Vaccines for Neurodegenerative Diseases

“…NDDs belong to a heterogeneous group of incurable and debilitating human ailments distinguished by the progressive degeneration and/or the death of nerve cells of the central nervous system (CNS), which may result in motor, behavioral, and cognitive deficits [ 3 , 4 , 5 , 6 ]. Patients suffering from NDDs tend to experience impaired social functioning, depression, and sleep disorders [ 7 , 8 , 9 ], while the caregivers of these individuals might face social isolation, stress, burnout, and anxiety [ 7 ]. The most representative NDDs are Alzheimer’s disease (AD), Parkinson’s disease (PD), multiple sclerosis (MS), amyotrophic lateral sclerosis (ALS), and Huntington’s disease (HD) [ 10 ].…”

The Impact of Rapidly Progressing Neurodegenerative Disorders on Caregivers

“…The rapid, progressive muscle paralysis from the disease process affects every aspect of a patient's daily life, and resulting challenges negatively impact caregivers' QoL. 4,7,8 Frequent changes in care-recipient needs place a significant burden on the financial, emotional, and physical aspects of caregivers' QoL. As an example, a caregiver may need to learn how to use new medical equipment for transferring, prepare food for a patient who has difficulty swallowing, and find new ways to communicate, in less than a few months.…”

“…With the critical services that caregivers provide, evidence shows that they face a significant amount of stress and burden. The rapid, progressive muscle paralysis from the disease process affects every aspect of a patient's daily life, and resulting challenges negatively impact caregivers' QoL 4,7,8 . Frequent changes in care-recipient needs place a significant burden on the financial, emotional, and physical aspects of caregivers' QoL.…”