The effectiveness of interventions to improve psychosocial outcomes in parents of children with appearance‐affecting health conditions: A systematic review

Abstract

Background: Although many cope well, the impact of supporting a child with an Appearance-Affecting Health Condition (AAHC) can place a significant demand on parents. As such, it is vital that families have access to appropriate psychosocial support to reduce any potential difficulties. Although previous reviews have explored the effectiveness of psychosocial interventions for parents of Children and Young People (CYP) with general health conditions, the evidence of effectiveness remains limited. Further, little is known about the effectiveness of such interventions specifically among parents of CYP with AAHCs. This review aimed to identify and assess the evidence of effectiveness of psychosocial interventions among parents of CYP with AAHCs. Methods: Database searches were conducted using MEDLINE, PsychARTICLES, PsychINFO, CINAHL Plus, the British Nursing Database and the Cochrane Library. Results were reviewed against the inclusion criteria and data were extracted. Methodological quality was assessed using the Effective Public Health Practice Project Quality Assessment Tool, and a narrative synthesis was conducted. Results: Fifteen studies, evaluating 10 interventions, were included and overall seven interventions were found to be effective (effect sizes and methodological quality varied). Conclusions: This review finds moderate to strong evidence of effectiveness of the Triple P Positive Parenting Program, the Early Family Intervention Program and general parent education/training interventions. These findings offer useful insights relating to the delivery of current support, as well as for the development of future parent and family interventions. Finally, recommendations for future intervention evaluation studies in this area are made.

Applicability of a Tool for Comprehensive Pediatric Assessments: The Expanded Guide for Monitoring Child Development

“…They elicited further history when needed, observed child-caregiver play and conducted a physical examination. During the physical examination, appearance affecting conditions [20] such as tracheostomy, colostomy, ventriculoperitoneal shunt were also recorded as components of the "body structures" domain. Standardized developmental assessment tools were used according to the child's needs and included the GMCD, Bayley Scales of Infant and Toddler Development Third Edition, Vineland Adaptive Behavior Scales Third Edition, and the Childhood Autism Rating Scale Second Edition (CARS-2).…”

Rates and Correlates of Stigmatization Expressed by Parents of Young Children with Developmental Difficulties in a Middle-Income Country

“…This cross-sectional study was conducted over a 12-month period starting January 1, 2016, at Ankara University School of Medicine, Department of Pediatrics, Developmental-Behavioral Pediatrics Division (AUDBP). To study stigmatization in young children with DDs ranging in severity and manifestations, children aged 0 to 42 months were included if they were assessed for the first time at AUDBP and received a diagnosis of the following conditions: an illness or disability with a long-lasting, chronic course (autism spectrum disorder [ASD], cerebral palsy, genetic disorders, appearance-affecting condition, 21 and other chronic illnesses) or a condition that may be more subtle and transient, isolated expressive language delay.…”

Interventions and strategies to improve social support for caregivers of children with chronic diseases: An umbrella review

“…A systematic review synthesized early family intervention programs in support of parents with cleft lip and palate (29). Early intervention programs aiming to support parents in adapting to having a child with a disability were implemented when the child was 6, 12, and 18 months, which demonstrated moderate evidence for the effectiveness of increasing perceived spousal emotional support (29).…”

“…The "Early" is the stage when caregivers of children with chronic diseases frequently experience various problems, such as psychological maladaptation, frequent anxiety and depression. Interventions for caregivers at an early stage also have positive implications for promoting adaptation, reducing threats, increasing confidence, and reducing emotional distress, anxiety, and depression (29). Early help is more like timely rain.…”

“…Studies have shown that the level of social support is related to perceived stress, caregiver mentality, educational attainment, employment status and the utilization of support (26,27). Some systematic reviews have shown that connected health technologies are beneficial for providing psychosocial support for family caregivers affected by Pediatric cancer (28), and Early Family Intervention Program can increase perceived spousal emotional support for parents of children with appearanceaffecting health condition (29). Parenting intervention on psychosocial adjustment can also improve social support for parents of children with type 1 diabetes mellitus (30).…”