Anxiety, depression, and quality of life in parents of children with congenital hyperinsulinism

Abstract

This study aimed to assess mental health, family burden, and quality of life (PQoL) in parents of children with persistent congenital hyperinsulinism (CHI). Forty-eight individual CHI parents (75% female) completed self-reported questionnaires and screening tools for anxiety (GAD-7), depression (PHQ-8), PQoL (ULQIE), and family burden (FaBeL). Additional data on sociodemographics, social support, and child- and disease-related data were recorded. 29.8% of parents showed major depressive symptoms and 38.3% had a probable general anxiety disorder, including 20.8% who had both. The family burden was moderate and assessment of PQoL yielded average scores. Neurological impairment in an affected child (p = .002 and p < .001, respectively) and lower working hours (p = .001 and p = .012, respectively) were the strongest predictors of worse GAD-7 and PHQ-8 scores. Furthermore, lower working hours (p = .012) and comorbidities in the affected child (p = .007) were significantly associated with lower PQoL. Mothers had worse GAD-7 scores (p = .006) and lower PQoL (p = .035) than fathers. Indication of sleep disturbance was associated with worse PHQ-8 scores (p = .003), higher family burden (p = .039), and reduced PQoL (p = .003). A higher number of caretakers besides parents was associated with decreased family burden (p = .019), improved PQoL (p < .001), and lower scores for anxiety (p = .016) and depressive (p = .021) symptoms. Conclusion: Symptoms of depression and anxiety are alarmingly prevalent in parents of children with CHI. Psychological screening of parents should be initiated to ensure early identification of psychological strains and psychosocial support should be offered as needed. A good support network and regular work activities can improve parental mental health and well-being. What is Known:• Psychosocial strains and reduced quality of life are common in parents of chronically ill children. What is New:• In this first study evaluating mental health, family burden, and quality of life in parents of children with congenital hyperinsulinism (CHI), symptoms of depression and anxiety were alarmingly prevalent.• Parents of children with CHI should receive regular psychological screening and psychosocial support should be offered as needed. A good support network and regular work activities can improve parental mental health and well-being.

Impact on mental health and well-being of the dialogic literary gathering among women in a primary healthcare centre

“…One of the main characteristics of mental health and wellbeing, as highlighted by the WHO (WHO, 2021 ), is establishing positive relationships that help individuals face challenges. Indeed, there is a whole body of research on the link between having quality relationships and strong support networks and several positive health outcomes (Huang et al, 2017 ; Roeper et al, 2022 ). The present study shows that the DLG conducted in a primary health care centre impacted on the creation of solidarity and friendship relationships among participants, which helped many of them break the feeling of loneliness and overcome hardships.…”

“…Indeed, there is a wealth of scientific literature on the impact of strong social relationships and friendships on wellbeing and health, both physical and mental (Bosle et al, 2022 ; Gan & Best, 2021 ; Glaser et al, 2023 ). Having strong support networks is related with a lower prevalence of illnesses, such as cardiometabolic risk (Shartle et al, 2022 ); better health behaviours (Li & Yan, 2020 ); and improved mental health outcomes (Roeper et al, 2022 ), such as preventing suicidal ideation (Huang et al, 2017 ). For instance, several studies have shown that feelings of social connectedness and a sense of community were key for mitigating the impacts of COVID-19 and the lockdowns on wellbeing (Humphrey et al, 2022 ; Mannarini et al, 2022 ).…”

Bridging the gaps: recent advances in diagnosis, care, and outcomes in congenital hyperinsulinism

“…Their findings open the door for the development of neuroimaging biomarkers to assess neurological involvement and response to investigational therapies in HI [40 ▪ ]. Roeper et al performed the first systematic evaluation of psychosocial well-being for caregivers of children with HI [41]. The authors found high rates of caregiver anxiety and depression.…”