Families affected by Biliary Atresia face profound emotional and logistical challenges, and evidence consistently shows that caregivers of medically complex children experience elevated stress, anxiety, and reduced quality of life.

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To meet this critical need, BARE proposes a quarterly, 6-week virtual Caregiver Support Group Program facilitated by licensed Marriage & Family Therapist Amanda Griffith-Atkins. The program includes structured weekly sessions, a guided curriculum based on How to Handle More Than You Can Handle, pre- and post-program well-being assessments, and a strengthened national caregiver network. A quarterly Caregiver Wellness Pathway provides deeper support to reduce burnout and reinforce resilient coping tools.

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Why Invest in Caregiver Support?

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Families & adult patients managing Biliary Atresia navigate intense medical, emotional, and logistical demands. As confirmed in multiple studies, caregivers of children with medical complexity experience significantly elevated rates of mental health challenges—including anxiety, depression, and insufficient sleep—with downstream effects on daily functioning, family stability, and long-term health (Kuo et al., 2020; Horton et al., 2025; Dewan & Cohen, 2013). Conceptual models show that caring for a child with chronic functional limitations results in predictable stress burdens that compromise caregiver well-being and, ultimately, caregiving sustainability (Bailes et al., 2004).

Social support is one of the most effective protective factors. Evidence demonstrates that both perceived and actual support—including structured support groups—reduces caregiver distress, anxiety, depression, and burnout (Svec, 2024; Menaghan et al., 2001; Zarit et al., 1990). Qualitative and longitudinal studies show that participation in facilitated caregiver groups improves emotional regulation, coping, resilience, and overall quality of life, and in some cases reduces reliance on psychotropic medications.

 

For BA families & adult patients—who often lack disease-specific emotional support—this gap is significant. A structured, professionally facilitated program provides the community, tools, and emotional space necessary to strengthen caregiver health and long-term caregiving capacity.

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Program Objectives & Expected Outcomes 

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                     Objectives:

• Reduce caregiver psychological distress levels by providing a structured therapeutic support environment.

• Improve caregiver resilience, coping, and perceived social support.

• Strengthen caregiver capacity to provide consistent, compassionate care.

• Facilitate long-term caregiver community-building to reduce isolation.

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                     Expected Outcomes: ​

• Decreased self-reported anxiety, depression, and stress indicators

• Improved sleep quality and emotional regulation

• Increased perceived support and community connection

• Strengthened ability to sustain caregiving roles

• Enhanced quality of life for caregivers and their families

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Proof Is In The Pilot 

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Findings from our 6-week caregiver support group pilot were highly encouraging. Most participants reported improved emotional well-being, reduced symptoms of depression and anxiety, and stable or enhanced daily functioning. Reflections revealed a strong sense of community, validation, and emotional growth. Caregivers expressed enthusiasm for continuing the group, with several offering to support program expansion. Overall, the pilot demonstrates that this model is both feasible and profoundly impactful for caregivers of children with Biliary Atresia.