Exploratory study of the adequacy and sufficiency of support for families with a member with neurodegenerative disease

Abstract

Background: Neurodegenerative diseases (ND) are chronic pathologies that generate great limitations and disabilities in the person and other effects on the Family Quality of Life (FQoL). FQoL is a multidimensional concept that includes health of the family, financial well-being, family relationships, informal support, support from care services, the influence of values, leisure and recreation, and community interaction. Several studies have demonstrated the impact that the absence of supports has on the FQoL. Objective: This research aims to explore, from the perspective of social service professionals, to what extent the service supports available to people with ND and their families in the Spain-Portugal crossborder area are adequate and sufficient to contribute to the improvement of the FQoL. Method: Qualitative methodology has been implemented. Specifically, a focus group has been conducted. Seven public social service professionals (five social workers and 2 community animators) working in the cross-border area studied participated in it. With the support of the Atlas.ti software and following a deductive coding model, the data obtained were systematically coded and interpreted by grouping the information into categories. Main results: Initial research results suggest that 1) most of the support is exclusively aimed at the care of the sick person, even if it indirectly contributes to the improvement of the FQoL; 2) there are adequate support services for the improvement of the FQoL, but they are very insufficient; 3) formal support in the rural environment is limited by the characteristics of the environment. Conclusion: Initial results suggest that the lack of access and inadequacy of support services in rural areas has an impact on the FQoL.