Improving Well-being in Families of Children with Additional Needs
Research to date has underplayed the difficulties that many families experience, particularly those with children who have additional needs such as autism (ASD) and Down syndrome. Deirdre O’Loughlin, Johanna Gummerus, and Carol Kelleher strive to fill this gap with “It Never Ends: Vulnerable Consumers’ Experiences of Persistent Liminality and Resource (Mis)Integration,” which was published in the Journal of Service Research.
Many families around the world are caring for members with additional needs, which can be complex, unpredictable, and long-term. The challenges related to caregiving of this nature affect not only parents but also siblings, grandparents, and other members of the extended family. Such caring responsibilities directly impact the well-being of families and particularly primary caregivers (often mothers), who experience a wide range of negative outcomes including diminished physical and mental health, weakened social and personal relations and limited opportunities to work outside of the home.
We were particularly motivated to conduct this research through our personal connections to families who directly experience such caregiving challenges and who shared with us their on-going struggles with service providers, particularly within health and education. Their stories of love and courage on behalf of their children inspired us to empirically investigate the experiences of such families and identify ways of improving their well-being.
Our study took place in Ireland and Finland and involved close collaboration with representative organizations in both countries. We conducted 18 in-depth interviews with parents of children with ASD and Down syndrome. To frame our research, we used liminality to characterize the nature of parents’ experiences of the persistent challenges they face through the extended (often life-long) caregiving journey. Despite best efforts, we found that families became entrapped in an endless cycle in their attempts to identify, access, and secure the necessary services as their children’s condition and care needs constantly changed.
Our research highlights how families experienced persistent liminality through the three dynamics of Precipitating, Subsisting, and Resisting, which impacted their well-being. We reveal how the evolving nature of the condition and care needs coupled with ongoing challenges related to service access and suitability precipitated families into a persistent liminal state which they must subsist and endure or resist through advocating for their child and lobbying for much needed resources. We recommend that service organizations and policymakers better support vulnerable consumers with ongoing complex needs through more effective programs and policies.
Specifically, a holistic and integrated service that is family / child-specific and future-focused should be provided by highly trained personnel to support families effectively and meaningfully through the physical, emotional, and social challenges related to long-term caregiving. Additionally, a strategic and coordinated approach is required to assist families to plan for the longer-term welfare of their children, even after they come of age. We strongly encourage scholars to continue this important work to explore challenges facing other vulnerable consumers including those who are financially insecure, less educated, or mentally or physically ill.