Family well-being (FWB) is a key outcome for families of children with medical complexity (CMC). Though various frameworks exist for FWB, none adequately reflect the variety of ways families of CMC experience and describe it. Work by the national Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity (CMC CoIIN) found that topics in the literature did not resonate with a broad spectrum of families’ priorities in optimizing well-being.
We aimed to elicit determinants of FWB from families of CMC. Understanding how to facilitate (and eliminate barriers to) FWB for families of CMC can provide a guide for measuring FWB and targeting health systems interventions.
Method
Implications
Crowdsourcing survey administered to families of CMC through national family-led and professional organization listservs, social media groups, and clinical programs.
The survey included an open-ended prompt: “As a family who cares for a child with complex health issues, my family is doing well when…”
A family leader with lived experience and a pediatrician analyzed responses using qualitative content analysis.
Families of CMC conveyed a broad range of determinants of FWB, which highlight limitations in existing definitions and measures of FWB
The findings indicate the critical importance of system accountability for acknowledging, assessing, and optimizing FWB
Key Findings
Family’s internal system (e.g., the child, siblings, caregivers)
- All family members have good health and adequate sleep, financial stability, meaningful activities, healthy relationships, and ability to endure challenges.
Family’s external system (e.g., healthcare, education, employment)
- All systems value their child; partner with their family; are sufficiently funded; are accessible; and support CMC living at home.
The interface between families and systems
- Families are informed about systems; able to navigate and advocate within systems; and avoid trauma associated with system shortcomings.
Design
- Family partnership in developing crowdsourcing methods ensures accessibility, acceptability, and relevance of the initiative to diverse participants. Families were involved in every step of this project, from developing goals and questions to analyzing and sharing the results, making this a true example of family-driven research.
- Family engagement groups were facilitated by a family partner to ensure clarity, accessibility, accuracy, and relevance of the crowdsourcing survey for diverse families, especially Spanish speaking families.
- Recruitment was done via family-led/professional organization listservs, social media groups, clinical programs, and targeted Qualtrics purposeful sampling to improve diversity.
Timeline
- Crowdsourcing survey was administered November 2023 – April 2024.
- A significant time commitment is required for family partners to fully engage, including full participation in leadership team and research tasks, and preparing, coordinating and in some cases (i.e. qualitative analysis) doing background work to engage meaningfully.
Next phase
- Analyze and synthesize responses from the second crowdsourced survey question: “As a family who cares for a child with complex health issues, something that the health care system could do to make my family’s life better is…”
- Scoping review of FWB measures
Deliverables
- Graphic created and reviewed by families who helped develop the survey
- Multi-modal display of family quotes for each FWB component and facilitator
- Family Voices newsletter article to disseminate to families in plain language
Impact
- Established effective best practices and processes for deep family partnership at all phases
- Products will inform medical education, research, policy, quality improvement and care delivery for families of CMC.
- Results can provide a guide for targeted health and service systems interventions and measure development.