Family quality of life

Background: Although research in this area remains sparse, raising a child with some genetic disorders has been shown to adversely impact maternal health and family quality of life. The aim of this study was to investigate such impacts in families with a child with the CDKL5 disorder, a newly recognised genetic disorder causing severe neurodevelopmental impairments and refractory epilepsy.

Background: Fetal alcohol spectrum disorder (FASD) is a common neurodevelopmental condition. Given that individuals with FASD can experience lifelong challenges, one field of research that could be applicable is the paediatric chronic health literature.

Aims: The aim of the current study was to investigate the utility of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module, designed to measure the impact of paediatric chronic health conditions on caregivers and families.

We aimed to examine family quality of life (FQOL) of Northern Israeli families having a child with a severe neurodevelopmental disability and its relation to socio-demographics. The cohort included caregivers of 70 children ages (mean ± standard deviation) 5.36 ± 3.53 years. Families were two-parent (85.7%), lived in the periphery (67.1%) and included Jews (60%), Muslims (18.6%), Druze (14.3%) and Christians (7.1%). Religiosity included: secular (38.6%), traditional (31.4%), religious (30%).

Background: Neurodegenerative diseases (NDs) are one of the main causes of disability and dependence that have a great impact both on the quality of life of people with disabilities and their families. A majority of people with NDs receive care and support from the family, but there is no tool in Spain with which to measure whole-family QOL. The aim of this study was the translation, cultural adaptation, and validation of the FQOLS-Dementia into Spanish to assess FQOL among family members of individuals with NDs who live in the Spain-Portugal cross-border area.

Aims: Most caregiving literature focuses on individual-level outcomes, with sparse knowledge on family-level outcomes. Therefore, the purpose of this study was to describe the family quality of life (FQOL) of people with dementia and identify factors that influence their FQOL, as perceived by family caregivers. Methods: A convenience sample of 31 family caregivers of people with dementia was interviewed using a modified version of the Family Quality of Life Survey (FQOLS-2006).