A scoping review of parental experiences caring for their hospitalised medically fragile infants

Abstract

AimTo synthesise and summarise evidence from published research articles regarding parental experiences caring for their hospitalised medically fragile infant.MethodsWe searched four electronic databases in April 2018 using three main concepts individually and in combination: infant, medically fragile, parents. We examined articles about experiences of parents caring for the medically fragile infant in a hospital setting. We conducted thematic analysis on the 34 included articles.ResultsParents experienced high rates of depressive symptoms, depression, stress, anxiety, distress and post traumatic stress. Parent‐infant interactions were disrupted. Parents experienced loss and worry in response to the diagnosis of their infant, which altered or delayed parental role attainment. Supports and coping were key for parents to manage their stress.ConclusionParents of medically fragile infants experience multiple stressors, elevated levels of mental health difficulties, trouble attaining their parental role and often struggle to cope. Development of interventional research is needed to test targeted strategies aimed at reducing parental stress and mental health difficulties. Interventions should include: screening for parental mental health, psychological support, healthcare professional education, strategies to enhance parent‐infant interactions and improved relationship competencies among healthcare professionals.

Early Diagnostics and Early Intervention in Neurodevelopmental Disorders—Age-Dependent Challenges and Opportunities

“…Currently, family integrated care is getting implemented, a form of care in which parents provide all except the most advanced medical care for their infants [145][146][147]. In general, more parental involvement is associated with better outcomes of family and infant [148][149][150].…”

“…Medically fragile infants and their parents experience high levels of stress [148][149][150]. Early intervention, generally called developmental care, aims at the promotion of parentinfant interaction, stress reduction and provision of a supportive environment.…”

Patient-driven healthcare recommendations for adults with esophageal atresia and their families

“…One could wonder if enough attention is paid to trauma stressors during hospitalization [43] . It is recommended to provide sufficient information about support resources at discharge, including contact details of patient associations and primary care providers [44] .…”

Child Welfare System Involvement Among Children With Medical Complexity

“…While some parents find a meaningful sense of purpose in life and show profound resilience, others report feeling overwhelmed and exhausted by the acute and chronic caregiving pressures thrust upon them and subsequently endure poor health-related quality of life ( Hatzmann et al, 2008 ). Caring for a child with special healthcare needs has been associated with elevated stress, physical and mental health problems, grief and trauma, sleep deprivation, employment loss, financial hardship, and social isolation ( Cousino & Hazen, 2013 ; Kuo et al, 2011 ; Mackay et al, 2019 ; Miodrag et al, 2015 ; Smith et al, 2013 ). A recent systematic review and meta-analysis of 26 studies found that caregivers, specifically mothers, of children with chronic illness experience clinical depression and anxiety at significantly higher rates than those with healthy children ( Cohn et al, 2020 ).…”