SHM Converge Scientific Abstract ePoster Gallery-Caregiver Perspectives Regarding Interventions to Improve Caregiver Wellness During Inpatient Admissions of Children With Medical Complexity

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This qualitative study explored caregiver perspectives on wellness during inpatient hospitalizations of children with medical complexity (CMC). The researchers interviewed English-speaking adult caregivers at a tertiary care center using private, semi-structured, audio-recorded interviews. Children were classified as CMC if they had medical technology dependence and were followed by at least three subspecialty teams; hospice patients were excluded. Interviews were transcribed, double-coded, and analyzed using grounded theory to identify themes. Data collection is ongoing, but preliminary findings from 9 families were reported.<br /><br />Caregivers described wellness primarily in terms of mental health, with all interviews emphasizing its importance. Hospitalization often disrupted caregivers’ own self-care, including missed medical appointments, poor sleep, and inadequate nutrition. While families appreciated existing hospital supports such as Child Life services and discounted parking, they also identified important unmet needs. Common concerns included limited food access, parking difficulties, and other logistical burdens.<br /><br />Caregivers also reported emotional strain, depression, stress, and loneliness during prolonged admissions. Many wanted more opportunities for social connection, including support groups and conversations with other parents. They also expressed interest in mental health check-ins and social work support, which were not consistently available. Some caregivers wanted better communication and more one-on-one time with the care team, as well as help from staff in understanding how they could participate in their child’s care.<br /><br />The authors conclude that caregivers of children with medical complexity face major barriers to maintaining their own wellbeing during hospital stays. Although current resources are valued, the findings suggest a need for more comprehensive support systems that include mental health services, social connection, and improved logistical accommodations.

Asset Subtitle

Tai Kyung S. Hairston

Meta Tag

Author List Amit K. Pahwa, Christopher K. Grybauskas, Eric Biondi, Rebecca R. Seltzer, Sara Mixter, Suzanne Grieb, Tai Kyung S. Hairston

Category Research

Concept Caregiver Wellness

Concept Holistic Approach

Concept Hospitalization

Concept Mental Health

Concept Self-Care

Distinguished Non-Finalist

Presenter Organization Johns Hopkins Children's Center

Presenting Author Tai Kyung S. Hairston

Track Pediatric

Keywords

caregiver wellness

children with medical complexity

inpatient hospitalization

mental health

qualitative study

grounded theory

hospital support services

social work support

caregiver burden

family-centered care

Caregiver Wellness

Holistic Approach

Hospitalization

Mental Health

Self-Care