The Experience of Parental Caregiving for Children With Medical Complexity

Abstract

Children with medical complexity (CMC) have complex chronic conditions with significant functional impairment, contributing to high caregiving demand. This study seeks to explore impacts of parental caregiving for CMC. Fifteen caregivers of CMC followed at a tertiary care hospital participated in semi-structured interviews. Interviews were concurrently analyzed using a qualitative description framework until thematic saturation was reached. Codes were grouped by shared concepts to clarify emergent findings. Four affected domains of parental caregiver experience with associated subthemes (in parentheses) were identified: personal (identity, physical health, mental health), family (marriage, siblings, family quality of life), social (time limitations, isolating lived experience), and financial (employment, medical costs, accessibility costs). Despite substantial challenges, caregivers identified two core determinants of personal resilience: others’ support (hands-on, interpersonal, informational, material) and a positive outlook (self-efficacy, self-compassion, reframing expectations). Further research is needed to understand the unique needs and strengths of caregivers for this vulnerable population.

2024 Watch List: Top 10 Technologies and Issues Related to Caring for Children and Youth With Medical Complexity

“…104 • Mental health and emotional support: Caregivers often experience high emotional stress, fatigue, and social isolation. 56,57,105 Access to mental health and emotional support, such as counselling services and peer support programs, could help to alleviate these challenges. We discuss this in greater detail in the Mental Health Support for Caregivers section.…”

NICU Graduates and Psychosocial Problems in Childhood: A Systematic Review

“…The stress, anxiety, and depression resulting from not knowing the health of their child, the inability to control these aspects of parenting, and the changes in perceived and expected roles can lead to increased levels of stress, anxiety, and depression [ 19 ]. Further, what seems to be a functional burden are the practicalities of caring for a medically complex child, facilitating appointments, and managing support services, which can be highly stressful for families [ 20 , 21 ].…”

An examination of characteristics, social supports, caregiver resilience and hospital readmissions of children with medical complexity

“…Limited social support from people or resources within the community, including respite from community services (i.e., home healthcare), is said to lead to CMC caregiver burden and contributes to their isolation, anxiety and depression (Foster et al, 2020;Muñeton-Castaño et al, 2022;Teicher et al, 2023;Yamoah & Brown, 2023). Social support is multidimensional and includes the following five support attributes: emotional, informational, instrumental, appraisal and social integration, as shown in Table 1 (Hutchison, 1999;Langford et al, 1997).…”

“…A need exists to enhance our understanding of the relationships between potentially modifiable risk factors for hospital readmissions and a child's complex medical needs, social supports in the community available to both the child and their caregiver and caregiver resilience. Limited social support from people or resources within the community, including respite from community services (i.e., home healthcare), is said to lead to CMC caregiver burden and contributes to their isolation, anxiety and depression (Foster et al, 2020; Muñeton‐Castaño et al, 2022; Teicher et al, 2023; Yamoah & Brown, 2023). Social support is multidimensional and includes the following five support attributes: emotional, informational, instrumental, appraisal and social integration, as shown in Table 1 (Hutchison, 1999; Langford et al, 1997).…”

“…Social support is multidimensional and includes the following five support attributes: emotional, informational, instrumental, appraisal and social integration, as shown in Table 1 (Hutchison, 1999; Langford et al, 1997). Social support for caregivers of children with disabilities or special healthcare needs (i.e., CMC) protects caregivers from stress‐related adverse outcomes, promotes resilience (Hendriani, 2017; Peer & Hillman, 2015; Teicher et al, 2023) and helps mitigate the effects of caregiving (De Stasio et al, 2020; Teicher et al, 2023). Adequate social support is also shown to promote parental and family resilience (Pandey et al, 2019; Walsh, 1996).…”