Caring for a child with Juvenile Huntington’s Disease: helpful and unhelpful support

Abstract

There has been little research into the psychosocial impact of Juvenile Huntington's Disease on the child and family. This study investigates the social and health care needs of those affected by Juvenile Huntington's Disease. Ten semi-structured interviews with carers were analysed using the qualitative methodology interpretative phenomenological analysis. This article reports three themes on the social support that families received. The first theme describes how parents perceived the support that they received from family and friends. The second and third themes describe how parents perceived helpful and unhelpful experiences of professional support. This corresponds to the view that social support is a 'double-edged sword', which can both ameliorate the effects of, and be a source of, stress. This information should be useful to those supporting the family of a child with a chronic or terminal illness.

The need of social support, life attitudes and life satisfaction among parents of children suffering from epidermolysis bullosa

“…Family problems are connected with less support from loved ones. It should also be remembered that the parents of children with EB perceive the support they get differently [12], and they sometimes see it as a source of stress. The above data are consistent with the results obtained for the model of life satisfaction (Table 4), in which also the information support from family and the severity of the child's disease were found to be variables of significant influence on the sense of life satisfaction.…”

“…Each situation affects the parents of ill children differently. Taking care of an incurably ill child often puts a parent in a hard situation and requires an assessment of the child's needs at every stage of being with it [12][13][14][15][16]. In the case of EB, there are practically no such studies at all.…”

The personal experience of parenting a child with Juvenile Huntington’s Disease: perceptions across Europe

“…Key findings included: how families experienced isolation and a lack of understanding about JHD; how many parents were aware that something was wrong with their child; and perceptions of helpful and unhelpful forms of social support from families, friends and health-care professionals. [11][12][13] The study reported here aims to develop and extend the existing understanding of the personal experience of families living with a child with JHD; how they think, feel and manage the challenges that face them. The study recruited parents from four European countries: Italy, The Netherlands, Poland and Sweden.…”

“…IPA has been employed in a number of studies examining psychosocial issues in genetics (see, eg, references [15][16][17] in addition to the previous work on JHD. [11][12][13] …”

Indicadores emocionais no desenho da figura humana de crianças transplantadas de órgãos

“…Para os autores, os esforços que se têm feito para entender as necessidades em saúde mental dessas crianças têm sido problemáticos pelas limitações metodológicas: a maioria dos estudos se fundamenta em informações dos pais sobre o comportamento da criança e pouco se conhece sobre a percepção das pró-prias crianças. Porém sabe-se que a opinião dos pais tem importante viés, especialmente pelo fato de que muitos progenitores de crianças doentes crônicas apresentam comportamentos superprotetores (Gartstein et al, 2000;Remor, Ulla, Ramos, Arranz, & Hernández-Navarro, 2003), dispõem de pouco apoio social (Brewer et al, 2007) e tem riscos de apresentarem estresse pós-traumá-tico (Farley et al, 2007;Young et al, 2003).…”