Parental Stress and Family Quality of Life: Surveying Family Members of Persons with Intellectual Disabilities

Abstract

(1) Background. This study assesses the quality of life in families with a member with an intellectual disability using the Family Adjustment and Adaptation Response framework. (2) Methods. The study included 515 Spanish participants whose family members with disabilities range in age from infancy to adulthood. We hypothesized that it is possible to predict parenting stress by paying attention to the meaning families give to themselves and their circumstances while controlling for the impact of other variables such as family capabilities and characteristics of the family member with disabilities. We used the Beach Center Family Quality of Life Scale and the section on Exceptional needs of medical and behavioral support from the Supports Intensity Scale, together with other potential predictors. The subscale on parental stress from the Parenting Stress Index–Short Form was utilized as a criterion measure. (3) Results. Hierarchical multiple regression analysis revealed that 49% of parental stress was predicted by dysfunctional interaction, difficult behaviors, low emotional wellbeing, poor family interaction, as well as kinship as parents, and the severity of both the medical needs and intellectual disability. (4) Conclusions. The stress experienced by those families is mostly predicted by the meaning they give to themselves and their circumstances. Implications of these findings for service delivery are discussed.

Parental Stress and Disability in Offspring: A Snapshot during the COVID-19 Pandemic

“…Our finding is in line with a recent research conducted during COVID-19 on 515 Spanish individuals with a family member affected by intellectual disability. The authors reported that dysfunctional interaction patterns are among the family related factors that predicted parental stress [35].…”

Anxiety, Stress, and Resilience Strategies in Parents of Children with Typical and Late Psychosocial Development: Comparative Analysis

“…Asians value group harmony more, while Western culture values independence [ 27 ] (p. 355). When it comes to predictors of parental stress, previous studies have emphasized that the traits that are associated with people with intellectual disabilities, such as medical problems, can be considered elements that contribute to parental stress, even in cases in which other types of family factors are taken into consideration [ 32 ]. Culture is also a strong predictor of parental expectations regarding a child’s cognitive and social development; Western cultures expect the child to develop earlier than the developmental charts compared to traditional cultures [ 33 ] (p.134).…”

Consensus Statement for the Management and Treatment of Sturge-Weber Syndrome: Neurology, Neuroimaging, and Ophthalmology Recommendations

“…11 In addition to decreased QoL of the patient with intellectual handicaps, family members also experience more stress and face many challenges to support the patient's needs and transition to adulthood. 48 Therefore, physicians caring for these patients should enquire about QoL. 49 It is important to note that addressing QoL and psychosocial issues depends on a strong patient-and family-physician relationship.…”