Carers’ Experiences in Families Impacted by Huntington’s Disease: A Qualitative Interpretive Meta-Synthesis

A experiência psicossocial de cuidadores informais de pessoas com paramiloidose: Um estudo qualitativo

“…Segundo vários cuidadores do nosso estudo, prestar cuidados ao doente com paramiloidose teve um impacto relacional positivo. Este resultado foi distinto do mencionado em investigações na doença de Huntington (Parekh et al, 2018;Røthing et al, 2014). Esses estudos, cuja maioria dos cuidadores eram esposas dos doentes, sugeriram que, devido a alterações na personalidade e ao aumento da dependência do doente com Huntington, a relação foi negativamente afetada, havendo perda de intimidade (Parekh et al, 2018;Røthing et al, 2014).…”

Thematic Analysis in Social Work: A Case Study

“…Qualitative methods are an established component of research models in various branches of inquiry, including social work, and have been used by social work researchers studying a range of dimensions, such as the family [11][12][13][14], women [15][16][17], children [18][19][20][21], and mental health services [18,[22][23][24]. Thus, qualitative research methods have served to develop various domains of social work intervention ( Table 1).…”

The Ripple Effect: A Qualitative Overview of Challenges When Growing Up in Families Affected by Huntington’s Disease

“…These symptoms had been apparent before physical symptoms were present or a diagnosis was made, and were emphasised as particularly disrupting and confusing during childhood, and experienced as more challenging than physical symptoms. The negative impact HD can have on dynamics in a family has been well documented [5,9,10,13]; however, there is limited knowledge, so far, on how prodromal symptoms impact young people who have a parent with HD. The findings therefore provide new knowledge suggesting that children who grow up in families affected by HD may be particularly vulnerable to prodromal psychiatric and cognitive symptoms in the affected parent, even in the very early stages of the disease.…”

“…The participants' interactions with available health and social care providers were also, often, described as challenging; many felt they had not received adequate or appropriate support, and they were often left frustrated by a lack of information and appropriate action from health and care services. Few studies have specifically investigated the provision of support for young people in families affected by neurodegenerative diseases [8,18,29], and results from past research have often drawn on small or very mixed samples [5,20,21]. Available research has, however, suggested that, despite a need for support, young people may still feel that the impact the disease has on their childhood is overlooked by the available services [8,18,19]; hence, although both formal and informal services are available, those services may not be provided to families affected by HD, as there is a lack of understanding and information available about the impact of HD can have on young people, which may lead to inappropriate or inadequate support.…”

“…A diagnosis is made when a person presents with overt physical symptoms, but prodromal symptoms that negatively affect cognition, mental health, and motor skills may be present for years prior to a diagnosis [3,4]. The typical age of onset for HD is 35 to 45 years [2], and many of those affected will therefore have caretaking responsibilities for children and families when the symptoms first appear; hence, HD is likely to impact the whole family, including children and adolescents, at a vulnerable stage of their lives [5][6][7].…”