Introduction Shortage of information about Huntington disease (HD) and its non-clinical management inveigled me into a quest for journal articles about this comparatively rare illness. Having pored over scores of Journal of Clinical Nursing Issues, I stumbled across the article entitled “Exploring supportive care for individuals affected by Huntington disease and their family caregivers in a community setting”. It immediately arrested my attention, as it touched upon the possible implications of HD for the affected persons, their family members (including those, who could inherit the illness genetically) and caregivers.
This article is a collaborative work of the three authors from the University of Plymouth, namely Beverley Soltysiak, Penny Gardiner and Heather Skirton. It was published first on 10 July, 2008. Summary of the article According to McDonald (2003), Huntington disease, formerly known as Huntington’s chorea, is a chronic neurodegenerative condition caused by a genetic mutation in the Huntingtin gene, situated on chromosome 4”. The article traverses implications and supportive care approaches to the individuals, who suffer from Huntington disease. Authors argue that different approaches should be applied to various age categories of the affected.
The difference in symptoms may be subtle at first glance, but younger individuals, affected by the long-term conditions, find facilities for their senior counterparts unsuitable. Important role in this regard belongs to the psychological aspects of the disease. People struck by HD tend to lead sedentary and recluse life. Huntington disease affects badly humans’ perception and cognition, renders their speech unintelligible, and makes them helpless to some extent in general. The far-reaching implications include unsteady gait and severe depressions, which sometimes result in strangers mistaking persons with HD for inebriates or drug abusers.
It takes protracted periods of time and frenzied efforts of caregivers to jolt people affected by Huntington disease out of the so-called “public alienation”. Authors argue that Huntington disease is debilitating in terms of its impact on the person’s physical condition, but they conclude that it is devouring person’s psychological strength even more eagerly. Sporadic outdoors activities lead to the development of the trait of standoffishness, which, in its turn, hinders the process of treatment. This illness is incurable, while affected people usually live no more than 30 years after the emergence of the first symptoms.
However, multifarious therapies and techniques aimed at helping patients to cope with the disease are employed (physiotherapy, occupational therapy, speech therapy). A multidisciplinary approach is utilized to make sure that complex care needs are met. Research focuses in part on interviewing the afflicted people in order to understand better how to help them to deal with the problems they face every day (anxiety disorders, animosity, petulance, apathy, and obsession). Depending on their willingness to cooperate, separate persons were interviewed individually or in groups.
It was found that participants with cognitive deficits or/and psychic disorders did not feel comfortable to communicate with impaired colleagues in groups, and consequently opted for individual interview or shunned it at all. The same specialists facilitated both group and individual interviews. “Data analysis was undertaken using inductive coding technique” (Miles & Huberman, 1994). Interviewers point out that it was a daunting task for them to conduct the research, because cognitive problems of people with Huntington disease barred interviewers from following their train of thought.
The heed was paid to the participants’ standpoint on the following themes: 1) Deciding whether to have genetic test; 2) Being given the lethal diagnosis; 3) Disclosure of information about the participant’s being diagnosed with HD; 4) Entering into serious relationship and having a child; 5) Making decisions about how to let children know of the genetic mutation; 6) Observing a family member suffer and wither from HD. Following the diagnosis of one individual, other family members are haunted by or preoccupied with the fear of having genetic mutation.
Some people prefer being oblivious to this possibility, while others, prompted by the desire to obtain confidence in future, eagerly agree to undergo a genetic test. In any event, propitious outcome of a genetic test has not proved to be a precondition for sunny disposition. It failed to provide them with a necessary degree of certainty, as those, who turned out to be healthy, started to monitor themselves vigilantly for the possible appearance of symptoms. Evaluation This article provides a comprehensive study of the implications of HD and the means to address the challenges that these implications entail.
The main emphasis is placed on those with HD; though, a good amount of attention is also paid to their family members, who are prone to inherit the genetic mutation, and caregivers. Bearing in mind brevity of this research and overall paucity of research into non-clinical management of HD, it would not be wise to grumble about certain details that authors failed to examine. However, I see it fit to note that more approaches of incorporating the afflicted people into the social milieu should have been developed, or at least, more thorough analysis of those listed should have been provided.
In terms of interest, I would give this article eight points out of ten. On the plus side, it is laced with excerpts from the interviews, which enable the readers to take a closer look at the problem. Moreover, authors managed to construe the material without abusing the buzzwords. This makes the article flow easily and renders it readable to a broad audience. Given the scarcity of knowledge about this area of health assessment, there are no slightest doubts that further research into this area should be carried out. Many gaps still are due to be filled. Some of the possible directions of research were mentioned above.
The information highlighted in this article would be of an utmost importance to the family members of people with HD and those, who take care of these people. Hospital staff could also defer to some advice put forward by Soltysiak et al. This article constitutes a precious groundwork for the researchers, who are interested in this particular area.
Conclusion People affected by Huntington disease have to address a series of challenges in everyday life. It should be noted that neither these very people, nor their relatives, lead ordinary life after a family member has been diagnosed with HD. Huntington disease seriously undermines person’s physical and psychological well-being, with psychological effects having far greater scopes.
Reluctance of the affected persons to engage in social activities exacerbated by their distorted vision of the world hampers the process of treatment. There is no efficient treatment at all; though, a number of therapies were developed to extenuate the implications. The problem is that at the same time as people with HD need outdoors activities to muster stamina, they also need to muster stamina to go outdoors.
By and large, individuals prone to HD feel frustrated at the lack of information about HD held by health professors.
References MacDonald, M. E. , Gines, S. , Gusella, J. F. & Wheeler, V. C. (2003). Huntington’s disease. Neuromolecular Medicine, 4. Miles, M. , Huberman, A. (1994).
Qualitative data analysis – an expanded sourcebook. (2nded. ). Thousand Oaks, CA: Sage Publications. Soltysiak, B. , Gardiner, P. , Skirton, H. (2008). Exploring supportive care for individuals affected by Huntington disease and their family caregivers in a community setting. Journal of Clinical Nursing, 17, 7b, 226-234.