Parents share challenges of raising children with hypermobile EDS
Need for family-focused interventions and more hEDS awareness: Study
In a new study, parents highlight the challenges of raising children with hypermobile Ehlers-Danlos syndrome (hEDS), including emotional distress, difficulties interacting with healthcare professionals, and struggles accessing medical and psychological support.
Researchers stress the need for family-focused interventions to improve the physical and psychological health of hEDS children and their families, as well as more education and training for medical professionals to recognize the condition.
Details from these parent interviews were described in a study, “The centrality of healthcare and education interactions – An Interpretive Phenomenological Analysis of experiences of parents of children with Ehlers-Danlos Syndrome,” published in Research in Developmental Disabilities.
hEDS can cause severe physical disability, life-threatening complications
hEDS is the most common type of EDS, a group of genetic connective tissue disorders characterized by unusually mobile joints and stretchy skin. In some cases, it can cause severe physical disability and life-threatening vascular complications.
Emerging research suggests parents of children diagnosed with hEDS or suspected of having the disorder report more negative healthcare experiences. Many professionals have limited knowledge of hEDS, and communicating with healthcare workers and accessing healthcare is difficult, with patients often seeing multiple providers before reaching a diagnosis.
In this report, investigators in Ireland interviewed parents of children with hEDS to better understand their lived experiences.
“We are interested in how systems, such as healthcare and education, may impact on families and the children and how, in turn, parenting and the family system may be both impacted by the condition and impact on the child,” the investigators wrote.
Four sets of parents were recruited to participate in semi-structured interviews. The children were from 12 to 18 years old.
The data revealed three distinct themes: challenges associated with hEDS, interactions with professionals, and “pulling and pacing” or how parents and their children used different strategies to cope with hEDS.
Hypermobile EDS can also affect mental health of children
Parents and their children faced psychological distress due to a lack of awareness about hEDS, struggles in coping with the condition, frustration over disrupted childhoods, and financial stress. All parents reported the psychological effect of hEDS on their children, with one child seeing a psychologist.
“Julie told the psychologist she hates being different,” and her passive death wish was caused by “frustration of dealing with the fact that she was different,” said a parent of two children with hEDS. All participants also spoke about how their children resented having the condition.
For three parents, the financial strain associated with having a child with hEDS was caused by difficulties in accessing medication and specialist care, particularly at a local level. Two families had to travel abroad to get specialist care.
Parents faced challenges with healthcare professionals who showed varying levels of support, leading to both positive and negative interactions, including experiences of skepticism and blame.
“He spent about 15 min shouting at me and telling me that I needed to stop looking for something wrong with my child, and basically, it was all my fault,” said a parent about an experience before their child’s diagnosis.
Teachers were also dismissive and skeptical toward the children’s increased risk of injury.
Parents often knew more about hEDS symptoms, because of the rare nature of the disorder, than healthcare professionals. They said the best outcomes happened when healthcare professionals recognized and valued their expertise.
“They kind of know my wife knows more about it than they do … they will listen more, and they will go along with what she is saying,” one parent noted.
The theme of “pulling and pacing” referred to how parents and their children used different ways to cope with hEDS. While parents fought for recognition and healthcare services, their children rejected support because they didn’t want to appear different.
“We’d two and a half years of fighting to find out what was wrong with the child,” said the parent of two hEDS children.
Children’s desire to feel ‘normal’ was recurrent theme
Meanwhile, their child’s desire to be “normal” was a recurrent theme, and can affect adherence to treatment.
“A lot of it is trying to be what he considers normal. That he shouldn’t have to be taking all these tablets so why should he?” a parent said.
Another parent added about their child: “He will not use the laptop in school because he doesn’t want to be different. Same with the ergonomic chair.”
All parents expressed inner strength in how they managed and coped with hEDS.
“I hope that we can kind of integrate it into our lives without rejecting it or without amplifying it,” said one parent.
Some parents were in support groups, in person or online, which provided “a sense of relief” when they realized they weren’t the only family dealing with hEDS.
“Actually meeting people who knew the everyday things about it and knew exactly what we were talking about. That helped more than anything else, I think,” a parent said.
Overall, the study offers insights into how hEDS affects parenting experiences, and is the “first of its kind to explore the experiences of parenting a child with the relatively unknown hereditary connective tissue disorder,” the researchers wrote.
“Participants’ in-depth accounts of their children’s experiences add to the scarce qualitative research base on EDS and illustrate how the illness impacts on the psychological, social, and emotional health of children and their parents,” they added.
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