Quality of family life: the perception of family members of people with neurodegenerative disease

Abstract

Chronic diseases, such as neurodegenerative ones, develop progressive effects that potentiate suffering and exhaustion, both in the patient and in the caring family , and may affect their quality of life in several áreas. Objectives: To know family’s concept of quality of life and the main affected áreas by the caring process to patients with a neurodegenerative disease. To identify in family’s point of view, their main needs to well care. Methods: A qualitative and phenomenological study was developed using the focus group technique with five family members of patients with a neurodegenerative disease, using an interview guide with questions related to the perception of family quality of life, most affected areas and felt needs. Results: Collected data were submitted to content analysis, highlighting as main categories: the quality of family life as global well-being; the implications for social life, family functioning; the emotional and life projects; needs in terms of family enabling and professional background. Conclusions: Results highlight that family functioning is deeply affected within the frame of a neurodegenrative disease in one of its members, which shows us the need to assess family quality of life to an effective intervention in improving the daily lives of these families.