Anticipatory Grief Support for Parents and Caregivers of Medically Fragile Children: A Needs Assessment

Medically complex children, defined as those with two or more chronic and severe health issues requiring ongoing care, pose unique challenges to parents and caregivers due to the intensive, multidisciplinary care they require. The United States houses approximately three million such individuals, with a notable subset in Utah alone. A scarcity of parental resources exacerbates the burden of parents facing anticipatory grief. Anticipatory grief is a multifaceted phenomenon that begins before an actual loss and is marked by psychological impacts such as anxiety and depression. Despite the existence of support systems for other demographics, a distinct gap remains for this population, particularly in coping with anticipatory grief. Local Problem: In Utah, 710 children benefit from the Utah Medically Complex Children's Waiver Program, with more awaiting assistance. Anticipatory grief support group resources to alleviate the burden of anticipatory grief are virtually non-existent in Utah and other states. The emotional challenges faced by parents, highlighted by the higher prevalence of mental health issues among this group, often go unaddressed due to a lack of anticipatory grief support groups. Methods: A needs assessment was conducted to determine the feasibility and usability of developing anticipatory grief support group modules for parents and caregivers of medically complex children. Interventions: An online survey was distributed to parents and caregivers of medically complex children to collect their anticipatory grief narratives. The parents and caregivers also participated in online discussion forums about their experiences caring for medically complex children and what they would find helpful in an anticipatory grief support group. The survey data and discussion forum content informed the development of the final anticipatory grief support group module. Results: Thirty-two parents and caregivers participated in the online discussion forums and 13 responded to the online survey. A significant 69.2% (n=9) of parents and caregivers acknowledged the relevance of anticipatory grief to their experience of profound sadness and anxiety, with average intensity ratings of 4.08 (n=7) and 4.31 (n=8) out of 5, respectively. Avoidance emerged as a coping mechanism for 69.2% (n=9) of the respondents. Support networks primarily consisted of family for 84.6% (n=11), friends for 61.5% (n=8), professional counseling or therapy for 46.2% (n=6), and support groups for 53.8% (n=7). 61.5% (n =8) of respondents noted anticipatory grief's negative impact on relationships outside of their immediate family circle. Preferences for online versus in-person support group formats were closely split, with a slight majority of 53.8% (n=7) preferring in-person meetings. Regarding coping strategies, 92.3% (n=12) of respondents expressed a preference for coping strategy guidance in anticipatory grief support groups, and 84.6% (n=11) wanted time to address the emotional impact of caregiving during anticipatory grief support group meetings. Conclusion: The use of online platforms and a participant survey identified parents' and caregivers' anticipatory grief needs. The impact of parents' and caregivers' unmet needs on their mental health was quantified. Parents' and caregivers' online communication and survey data shaped the development of an anticipatory grief support group module. Key