Families of Children with Medical Complexity Share What Well-Being Means to Them

Meg Comeau, CISWH senior project director and manager of the Powerbuilding and Leadership Lab, and Bethlyn Vergo Houlihan, CISWH senior project director and manager of the Social Work Innovation Lab, describe family perspectives and introduce a new framework for understanding and improving family well-being at the systems level.

According to families of children with medical complexity, well-being is shaped by both the everyday rhythm of home life and by how healthcare, education, community systems, and policies operate around them. Many noted that current definitions of family well-being do not accurately reflect their lived experiences and can feel deficit focused. They shared that existing tools often do not capture what matters most to them and their children, including connection, rest, dignity, and the ability to participate fully in community life.

Using a crowdsourcing approach to gather lived experience from families of children with medical complexity, the article identifies three key areas that support family well-being:

• Family routines and time together are central. Families described well-being as having stable routines, being together at home, and ensuring that siblings also feel supported. Many highlighted sleep as critical yet often difficult to achieve due to nighttime caregiving demands and home care workforce shortages.

• Systems play a significant role. Families reported improved well-being when systems of services and supports are reliable and accessible. Examples included medical supplies arriving on time, safe school transportation, flexible parental employment opportunities, and inclusive community spaces. A caregiver described receiving payment for caregiving responsibilities as life changing.

• Partnership and communication matter. Families emphasized that well-being increases when they are respected by healthcare and other professionals as experts in their child’s care, when information is transparent, and when navigating services does not require justification or advocacy.

The authors recommend that systems of care begin treating family well-being as a primary outcome, in conjunction with health-related outcomes. They suggest developing quality measures that reflect family experiences, integrating trauma-informed approaches, and ensuring that families play a meaningful role in clinical decision making and system improvement efforts. Aligning systems with what families identify as meaningful is essential for improving outcomes for children with medical complexity and their families.

Read the full article here.