Parents and JHD

Caregivers of JHD patients share their experiences with researchers.
The researchers conducted semi-structured interviews with parents/caregivers of JHD patients and looked for overarching themes. They found five.

The first theme was the gradually dawning awareness that something was wrong. Often a parent recognized that there was a problem even though other family members and the school didn't see it in the beginning. Some parents talked about how they couldn't articulate what was wrong at first, just that there was something not right.

The signs varied from child to child. Physical skills like skating or academic skills which had been mastered were lost or daily tasks took longer and longer to accomplish. Over time, it became clear that the child was not well. Some parents reported that the idea that their child had Juvenile Huntington's Disease came to them suddenly and when it did, they were convinced this was the explanation. Looking back, they could make sense of the changes that they had been seeing over time.

The second theme was the physical problems caused by the disease. Mobility was a major concern as children experienced problems with gait, falling, and getting around on their own. Seizures and pain were also a focus.

Speech and communication problems were a third theme. Parents were concerned at how their child's increasing difficulty with speech served to isolate them from their peers. The children were frustrated with their problems in making themselves understood and parents were frustrated as well as they tried to understand them.

A fourth theme was the need to deal with behavioral problems, including aggression, incessant demands for immediate attention, public censure by people who perceive the child to be undisciplined or in contrast, better behavior with others than with the parents. It was often hard for parents to figure out what was caused by the disease and what was normal disobedience that should be managed.

A final theme was the slow, relentless progression of the disease that parents struggle to understand and adapt to.

Although the focus of the study was the parents' experiences with this challenging disease, for me this study also serves to highlight the importance of good information, care, and social and educational assistance for these families and children.

Marsha L. Miller, Ph.D.
The Personal Experience of Juvenile Huntington's Disease: An Interpretative Phenomenological Analysis of Parents' Accounts of the Primary Features of a Rare Genetic Condition
JA Smith, HM Brewer, V Eatough, CA Stanley, NW Glendinning, and OWJ Quarrell
There has been a paucity of research into the psychosocial impact of juvenile Huntington's disease (JHD) on the child and the family. The study reported here is part of larger project that aimed to address this and investigate the social and health care needs of those affected by JHD. Ten semistructured interviews with the main caregiver(s) were carried out and were analyzed using the qualitative methodology interpretative phenomenological analysis. The main themes arising from the analysis are reported here: first becoming aware something is wrong; physical symptoms; speech and communication difficulties; behavioral problems; a slow but relentless process. These are discussed in relation to extant literature. We hope the article will be helpful to clinicians working with families where a child is affected by JHD and also contribute to the general literature on understanding symptoms in childhood illness.
Clinical Genetics Volume 69 Page 486 - June 2006