H011 A systematic literature review conceptualising the psychosocial impact of HD on individuals, family caregivers, and family systems
Year: 2024
Type: review
Study design: Systematic Review
Abstract: Background A plethora of research has explored the physical and cognitive symptomology of individuals affected by HD, in addition to psychological experiences such as anxiety and low mood. Evidence suggests that family caregivers may have similar emotional and social experiences to people with HD yet negate the inclusion of the collective exploration of such experiences for HD-affected families. Furthermore, limited consideration has been given within pre-existing literature reviews as to how HD affects family relationships. Aims The aims were to examine the psychosocial impact of HD for people with HD; the psychosocial impact for family caregivers; and to explore the impact that HD had on family dynamics. Methods The SPIDER framework shaped the systematic search. 2,446 papers were initially located and narrowed down to 9 qualitative studies. The Cochrane Data Extraction Tool was used to assess suitability for inclusion, and the JBI tool was chosen to appraise full-text articles. The researcher adopted an interpretivist epistemological position. Results Results encompassed five interconnected superordinate themes present for both people with HD and family caregivers: disintegration with society; the internal world in turmoil; an interplay of extrinsic stressors; destabilisation of the family system; and fears for the ambiguous future. Conclusions This review highlights the pervasive psychological and social difficulties families face in the context of HD. This has significant implications for clinical practice, highlighting the uniqueness of HD and the need to develop interventions that support psychosocial challenges that family systems as a whole may encounter.
Authors: Paige Lindo, Sarah Gunn
Institution: University of Leicester
Language: English
Subfield: Cellular and Molecular Neuroscience
Field: Neuroscience
Domain: Life Sciences
Open Access status: gold
OpenAlex ID: W4402374820