Caring for the Caregiver: Exploring the Experience of Caregiving for a Chid With Medical Complexity

Abstract

BACKGROUND Children with medical complexity (CMC) represent a growing population in the paediatric healthcare system. CMCs’ multiple health needs, illness severity, and fragility lead to a high degree of caregiver burnout, parental employment loss, and other social and financial consequences. Healthcare providers must consider a holistic view of the family, including consideration of social determinants of health [SDOH]: socio-economic status, employment, quality of housing, availability of social support, and access to healthcare services. This study addresses a gap in current research by exploring how caring for a CMC exacerbates social inequalities, and how these challenges may be mitigated. OBJECTIVES 1. What are the SDOH impacting CMC and their families? 2. How do families report the impact of their child’s medical complexity on their social circumstances? DESIGN/METHODS A qualitative description approach was used to enable rich data collection through semi-structured interviews until thematic saturation was reached. Nine interviews were conducted with CMC caregivers who were chosen by purposeful sampling. The interview guide was developed by expert consultation and iteratively refined. Ethics approval and written consent were obtained. Interviews were recorded and transcribed verbatim. Three team members independently coded the interviews for recurrent themes to inform qualitative content analysis. RESULTS Caregiving for a CMC is all-consuming, requiring parents to take on roles including planner, medical professional, medical educator, and advocate. Parents of CMC report three major areas negatively impacted by caregiving: 1) physical and mental health; 2) personal relationships; and 3) finances. Additionally, three themes emerged describing enablers for resiliency: 1) the CMC’s health status when well or stable in hospital; 2) acceptance of one’s limitations as a caregiver and of the family’s ‘new normal’; and 3) broad supports including medical, personal, financial, and educational. CONCLUSION The wellbeing of CMC families is impacted by medical and social factors. An interdisciplinary model of care may offset some of the caregiver’s advocacy and medical educator responsibilities. Paediatricians can support families of CMC by providing comprehensive care for all components of the child’s health status, and by including routine assessment of the family’s SDOH. Finally, explicit discussion about parental expectations and caregiver burnout helps foster a positive therapeutic relationship with the family.

The Photographs of Meaning Program for Pediatric Palliative Caregivers and Its Impact on Meaning, Well-Being, and Perceived Social Support

“…The high burden of caring for a child or adolescent with palliative care needs in a nonclinical capacity is well documented. [1][2][3][4][5][6][7][8][9][10][11] Pediatric palliative caregivers, or PPCGs, make up 7.3% of the population 1 and most commonly are caring for their own child due to ailments, including mental health problems, developmental disabilities, and other neurological diseases. 2 PPCGs are significantly younger than caregivers of adults, spend more time caregiving per week, 1,2 and describe much heavier financial burden.…”

“…2 PPCGs are significantly younger than caregivers of adults, spend more time caregiving per week, 1,2 and describe much heavier financial burden. 1,2,4 The responsibility of child caregiving can have a significant negative influence on the life of a PPCG, with higher burden associating with lower quality of life. [5][6][7][8] Physical and psychological health is often compromised, with PPCGs reporting poorer health outcomes than adult caregivers.…”

“…[5][6][7][8] Physical and psychological health is often compromised, with PPCGs reporting poorer health outcomes than adult caregivers. 1,4,9 There are significantly greater levels of depression, anxiety, insomnia, and psychological distress. 2 Finding balance and maintaining well-being can be difficult for PPCGs due to the ever-changing circumstances and limited flexibility.…”

“…8,10 Social well-being is negatively affected when PPCGs have less time available to invest in relationships and end up feeling isolated from friends and their community. 1,4 The impact to social well-being is especially important, as social support can be an uplifting factor for PPCGs, both mediating stress and increasing resiliency. 4,8,11 Due to the effect of caregiving for a child or adolescent with palliative care needs, there is a call for evidence-based support interventions for PPCGs.…”

“…1,4 The impact to social well-being is especially important, as social support can be an uplifting factor for PPCGs, both mediating stress and increasing resiliency. 4,8,11 Due to the effect of caregiving for a child or adolescent with palliative care needs, there is a call for evidence-based support interventions for PPCGs. 3 Currently, 64% of all caregivers report that they do not receive psychosocial services despite 92% being interested in receiving support.…”