Kristin J Billaud Feragen, Sidsel Egedal, Siri Hagen Kjolaas
{"title":"Navigating competing needs: a qualitative study on parenthood with a partner with Huntington's disease.","authors":"Kristin J Billaud Feragen, Sidsel Egedal, Siri Hagen Kjolaas","doi":"10.1080/21642850.2025.2465614","DOIUrl":null,"url":null,"abstract":"<p><strong>Objective: </strong>Huntington's disease (HD) is a rare neurodegenerative condition characterised by progressive symptoms affecting motricity, cognition, neuropsychiatric function and behaviour. HD develops during a period of life in which many live in partnership and have children. HD impacts all family members through its cognitive and psychological symptoms, mid-life onset, long disease trajectory and genetic risk. The aim of the study was to explore how parents without HD experience and manage parenthood when their partner is affected by HD.</p><p><strong>Methods: </strong>Qualitative interviews with 14 caregivers were analysed using reflexive thematic analysis.</p><p><strong>Results: </strong>Three main themes with corresponding subthemes were identified, followed by an underlying theme: <i>Genetic risk: An underlying layer of complexity.</i> The first theme, <i>Balancing competing demands,</i> describes the challenges involved when attempting to attend to conflicting needs within the family<i>.</i> Theme 2, <i>Needing a shoulder to lean on</i>, covers participants' feelings of loneliness and their need to be seen by others, whereas Theme 3, <i>Restoring and building strength</i>, encompasses coping strategies used by caregivers to protect themselves and their children from potential negative experiences. The underlying theme describes how the genetic aspect of the disease permeates the participants' experiences across all other themes.</p><p><strong>Conclusion: </strong>Support providers may be unaware of the extensive repercussions HD can have on a family. Acknowledging the central role of partners without HD and their risk of psychological distress is crucial. Exhausted partners may struggle to support their children, which may lead to childhoods overshadowed by HD. For family members to prioritise their own needs, tailored support must be set in place for parents with HD.</p>","PeriodicalId":12891,"journal":{"name":"Health Psychology and Behavioral Medicine","volume":"13 1","pages":"2465614"},"PeriodicalIF":2.4000,"publicationDate":"2025-02-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11834796/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Health Psychology and Behavioral Medicine","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1080/21642850.2025.2465614","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2025/1/1 0:00:00","PubModel":"eCollection","JCR":"Q2","JCRName":"PSYCHOLOGY, CLINICAL","Score":null,"Total":0}
引用次数: 0
Abstract
Objective: Huntington's disease (HD) is a rare neurodegenerative condition characterised by progressive symptoms affecting motricity, cognition, neuropsychiatric function and behaviour. HD develops during a period of life in which many live in partnership and have children. HD impacts all family members through its cognitive and psychological symptoms, mid-life onset, long disease trajectory and genetic risk. The aim of the study was to explore how parents without HD experience and manage parenthood when their partner is affected by HD.
Methods: Qualitative interviews with 14 caregivers were analysed using reflexive thematic analysis.
Results: Three main themes with corresponding subthemes were identified, followed by an underlying theme: Genetic risk: An underlying layer of complexity. The first theme, Balancing competing demands, describes the challenges involved when attempting to attend to conflicting needs within the family. Theme 2, Needing a shoulder to lean on, covers participants' feelings of loneliness and their need to be seen by others, whereas Theme 3, Restoring and building strength, encompasses coping strategies used by caregivers to protect themselves and their children from potential negative experiences. The underlying theme describes how the genetic aspect of the disease permeates the participants' experiences across all other themes.
Conclusion: Support providers may be unaware of the extensive repercussions HD can have on a family. Acknowledging the central role of partners without HD and their risk of psychological distress is crucial. Exhausted partners may struggle to support their children, which may lead to childhoods overshadowed by HD. For family members to prioritise their own needs, tailored support must be set in place for parents with HD.
期刊介绍：
Health Psychology and Behavioral Medicine: an Open Access Journal (HPBM) publishes theoretical and empirical contributions on all aspects of research and practice into psychosocial, behavioral and biomedical aspects of health. HPBM publishes international, interdisciplinary research with diverse methodological approaches on: Assessment and diagnosis Narratives, experiences and discourses of health and illness Treatment processes and recovery Health cognitions and behaviors at population and individual levels Psychosocial an behavioral prevention interventions Psychosocial determinants and consequences of behavior Social and cultural contexts of health and illness, health disparities Health, illness and medicine Application of advanced information and communication technology.
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