Abstract
(1) Parents caring for children and adolescents with rare diseases fear the long-term progression of the child’s disease and the loss of their parental role. The aim of this study was to examine the quality of life, mental health and associated protective factors of mothers and fathers caring for children with rare diseases requiring mechanical long-term ventilation. (2) In a cross-sectional design, data on quality of life, mental health, coping mechanisms, social support and family functioning from n = 75 affected families were collected using standardized psychometric questionnaires. (3) Mothers compared to fathers were significantly more impaired in their quality of life and mental health. Protective factors significantly associated with the respective outcomes for mothers were coping mechanisms, social support and family functioning, whereas for fathers solely the latter was found to be significant. Multiple regression analyses showed that family functioning may be the most important predictor of quality of life and mental health. (4) The results support the need for family-oriented care in parents of children with rare diseases. To reach optimal efficiency, health care providers should not only screen parents for psychosocial impairment but also provide interventions that consider gender-specific differences in psychological health.
Highlights
Despite an increasing interest in patients with rare diseases over the last few years, parents as the caregivers of affected children have received little attention within the healthcare system and in healthcare research
Protective factors significantly associated with the respective outcomes for mothers were coping mechanisms, social support and family functioning, whereas for fathers solely the latter was found to be significant
Rare diseases in childhood and adolescence have a tremendous impact on the psychosocial situation of all family members, since they demand a high level of care and disease management by the affected families [3]
Summary
Despite an increasing interest in patients with rare diseases over the last few years, parents as the caregivers of affected children have received little attention within the healthcare system and in healthcare research. Rare diseases are defined as diseases affecting less than one in 2000 people [1]. Rare diseases in childhood and adolescence have a tremendous impact on the psychosocial situation of all family members, since they demand a high level of care and disease management by the affected families [3]. Given the severity of most rare diseases and the number of people affected by them, their importance in health care is considerable [4]. Mothers of children with rare diseases face long-term challenges and major sacrifices including social isolation and financial adversity as they mostly take the main caregiving role [5,6,7]. It is not surprising that mothers and fathers of children with
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