A variety of psychosocial factors have been shown to affect the quality of life of families (FQoL).

This study aimed to assess the impact of mother's demographic characteristics, parental stress, illness perceptions about autism spectrum disorder (ASD), coping strategies, ASD severity and time since diagnosis on FQoL during the initial period following diagnosis (≤6 months).

Fifty-three mothers of children newly diagnosed with ASD completed the Beach Center Family Quality of Life Scale, the Autism Parenting Stress Index, the Brief Illness Perception Questionnaire and the Brief Coping Orientation to Problems Experienced Inventory. A descriptive analysis was conducted on the demographic characteristics of the family. Eta coefficients and Pearson's analysis were used to determine the associations between the variables and the FQoL dimensions. Hierarchical regression was used to determine whether variables explained a statistically significant family quality of life variance.

Pearson's analysis and eta coefficients indicated several correlations. Hierarchical regression analysis showed that higher parental stress related to core autism symptoms was associated with poorer FQoL (95% CI −0.08 to −0.02, P = 0.001), and higher perceived treatment control was associated with better FQoL (95% CI 0.04–0.16, P = 0.001). In addition, stronger perceived personal control was associated with higher physical/material well-being (95% CI 0.01–0.16, P = 0.022) and higher disability-related support (95% CI 0.30–0.61, P = 0.001). Higher family monthly income was associated with better FQoL (95% CI 0.08–0.027, P = 0.000), whereas marital status (divorced mother) was correlated with poorer FQoL (95% CI −0.68 to −0.16, P = 0.002).

Interventions should emphasise managing the disorder's characteristics and implementing psychoeducational and supportive programmes for parents, immediately after the diagnosis, to enhance FQoL.

Neurodegenerative diseases (NDs) are one of the major causes of dependency among older people. Since family members assume most of the care, the impact of NDs goes beyond the patient and affects the functioning of the entire family. Nonetheless, the concept of Family Quality of Life (FQOL) is still insufficiently developed in this field: the literature has focused on family caregivers from an individual perspective, paying less attention to the family unit. Hence, the objectives were to describe FQOL of people with NDs and to identify factors associated, from a holistic point of view.

The sample consisted of 300 family members of patients with NDs (70% females; mean age: 62.4) living in the cross-border region of Spain-Portugal, mostly in rural areas. The majority were primary caregivers. They completed the FQOLS–ND via telephone. This survey examined how the family perceived its FQOL at the global and domain-level, in terms of attainment and satisfaction (measured on a 5-point Likert scale). It also collected data on diverse respondents’ and family characteristics.

The average score in Global FQOL was 3.65 (SD = 0.70) for attainment and 3.69 (SD = 0.47) for satisfaction. By domains, the highest value was found in Family Relations and the lowest in Support from services. Twenty hierarchical multiple regressions examined the potential predictors of Global FQOL and the nine domains for attainment and satisfaction. Medium predictive values (from R2=.14 to R2=.20) were found in Financial wellbeing (satisfaction), Support from services, and Leisure. The number of perceived barriers to social-health services was a significant predictor in all the explanatory models (the most frequently cited being: long wait for service, services not available, problems with transportation, lack of information, and financial costs).

These results confirm that NDs are especially challenging in rural areas, where families feel more isolated and have fewer opportunities to receive professional support. Therefore, there is a need to design of a specific portfolio of services, resources and benefits that involves the key sectors of family welfare (public, private, third sector and family) and brings them closer to these areas, covering all the needs.

To evaluate stress and quality of life in parents of children with an intellectual disability (moderate–severe–profound), who attend a Child and Adolescent Mental Health Intellectual Disability Service (CAMHS ID), and to estimate the perceived levels of challenging behaviour and satisfaction with supports.

Data from children attending the service from 2014 to 2017, along with clinician and parent rating scales were collected.

Most children had medical comorbidities, autism spectrum disorder (ASD), and challenging behaviours. Half had a diagnosis of a mental health disorder. Less than half received respite care. Challenging behaviours and ASD were found to be correlated with increased parental stress while perception of support was inversely correlated with stress. Intellectual disability, ASD, and parental stress were correlated with a decrease in perceived family quality of life.

This study concurs with previous studies, outlining that parents of children with intellectual disability, in particular, where there is a diagnosis of comorbid ASD and challenging behaviour, experience increased psychological distress and lower quality of life.