How families thrive when caring for a medically complex child
By Louise Kinross
Over 300 family members of American children with complex health problems filled out a survey about what well-being looks like to them, and the findings were published in a Pediatrics article last month.
"Families of children with medical complexity, who have chronic conditions that affect multiple body systems, spend much of each day providing medical care for their child, and due largely to system shortcomings, they experience greater hardships and unmet needs," the authors wrote.
Existing measures of family well-being don't reflect their experiences, so the researchers created a new framework based on survey responses.
This online module is a fun way to learn about the framework. It includes images and quotes from families and a call to action for policymakers, educators and researchers.
"We should think of assessing and improving family well-being as being essential to clinical care, like assessing and improving nutrition and sleep, not something extra," said lead author Dr. Kathleen Huth, a pediatrician in the complex care service at Boston Children's Hospital.
Parents and family members defined well-being as it relates to their immediate family unit, the outside systems they work with, and how the two interact.
Inside the family, respondents said their family is well when their child is stable and at home; parents are physically and mentally healthy; everyone gets good sleep; there are few disruptions to daily routines; the family has time and energy for fun, meaningful activities and to connect and support each other; and they work together through challenges.
One participant said: "We are doing well when my complex child is medically stable. When we have enough help in the form of personal care assistants and nurses, and if our allocated hours are filled or close to filled. We are doing well when parents can sleep. When parents have time to recharge. When we reach a place of acceptance. We are doing well when parents and caregivers are healthy, because if we are not healthy it's much harder to take care of our loved ones 24/7. We are doing well when we have friends and family to support us. When we have balance between living a full-time caregiving life and living a 'normal' life."
Sleep was reported as vital to family coping, so "it is imperative that studies assess quality of sleep for family caregivers and initiate interventions to improve sleep..." the authors wrote.
In relation to external systems like health and education, participants said their family thrives when their child is included and valued. This may mean they can participate in adapted classes and events nearby; more seasoned parents teach them how to advocate; and the school meets their child's needs.
Access to well-resourced services is important. "Supplies get shipped on time and we don't run out of formula," said one family member, and "we aren't fighting with insurance." Parents said consistent, well-trained home nurses and personal support workers, as well as respite care, promoted their well-being.
Families manage well when they can access the clinicians their child needs in a timely way, specialists communicate with each other, and family expertise is valued. Things go well "When we have compassionate doctors who take time to understand and make space to learn when they don't know," one participant said.
Well-being depends on stable family finances and insurance. Parents said they need jobs with the flexibility to care for a sick child or attend appointments.
In working with service providers, caregivers need to know how to find and use resources; how to effectively advocate for services; and systems that don't create more work, stress or trauma.
One respondent said her family was well when "our daughter's therapies, medications and equipment needs are met without having to make daily phone calls to doctors, insurance companies, therapist offices, medical equipment companies, nurse agencies and pharmacies." Another said wellness hinged on a child's needs being "met without my family needing to constantly and excessively justify each and every need."
The study was co-led by families and clinician-researchers—"from formulating the right research question, to designing the methods, to performing the crowdsourcing, doing the analysis, and reporting on the key findings," Dr. Huth said. The research team came from Boston Children's Hospital, Family Voices, Harvard Medical School, the University of Wisconsin-Madison, and the Boston University School of Social Work. Dr. Huth went to medical school at McMaster University in Hamilton, Ontario.
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