‘I knew it wasn’t normal, I just didn’t know what to do about it’
Adversity and caregiver support when growing up in a family with Huntington’s disease
Bibliographic Data
| ID | 21579989 |
|---|---|
| Authors | Siri Kjoelaas (0000-0003-3119-703X, Centre for Rare Disorders, Oslo University Hospital HF, Norway, corresponding author), Tine K Jensen (0000-0002-0751-0228, University of Oslo), Kristin J Billaud Feragen (0000-0002-0329-5671, Oslo University Hospital), Kristin B Feragen (Centre for Rare Disorders, Oslo University Hospital HF, Norway) |
| Year | 2022 |
| Volume | 37 |
| Issue | 2 |
| Pages | 211-229 |
| Publication date | 2022-02-01 |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Psychology & Health (JOURNAL) |
| Journal identifiers | ISSN: 0887-0446 • E-ISSN: 1476-8321 |
| Publisher | Informa UK Limited (PUBLISHER • GB) |
| DOI | 10.1080/08870446.2021.1907387 |
| PMID | 33887998 |
| OpenAlex | W3154082284 |
| Language | EN |
| References cited | 22 |
OBJECTIVE: Excessive adversity in childhood can have long-term consequences on health and well-being. One group of children that may be at risk are those who grow up with a parent with Huntington's disease (HD). Despite this, there is little knowledge about how these children are impacted by adversity. We aimed to explore adverse childhood experiences (ACEs) of individuals who grew up with a parent with HD and their perceptions of caregiver support. DESIGN: Semi-structured qualitative interviews of 36 adults and adolescents were analysed using interpretative phenomenological analysis (IPA). RESULTS: First, the analysis revealed a range of frequent adverse events during participants' childhoods, leading to feelings of uncertainty, loss, fear, and a lack of care. Next, how the presence or absence of support had impacted participants' perceptions of these experiences was analysed. Results showed that participants without support were often overwhelmed by feelings of stress, whereas participants with support tolerated adversity better. CONCLUSION: Findings suggest that children in families with HD can be exposed to a range of adverse experiences. Findings also suggest that sufficient support from a caregiver without HD can buffer or protect against negative consequences of these experiences
Adverse Childhood Experiences · Caregiver stress · Dementia · Developmental psychology · Disease · Feeling · Interpretative phenomenological analysis · Mental health · Perception · Primary caregiver · Psychiatry · Qualitative research · Clinical Psychology · Family Support in Illness · Fibromyalgia and Chronic Fatigue Syndrome Research · Genetic Neurodegenerative Diseases · Medicine · Psychology · Social Psychology
Adverse childhood experiences
Trauma coping strategies and psychological distress
Adverse childhood experiences
The Lifelong Effects of Early Childhood Adversity and Toxic Stress
The effect of multiple adverse childhood experiences on health
Interpretative phenomenological analysis.
Relationship of Childhood Abuse and Household Dysfunction to Many of the Leading Causes of Death in Adults
Consensual qualitative research
Interpretative Phenomenological Analysis
This could be me”
Balancing needs as a family caregiver in H untington's disease
A Guide to Conducting Consensual Qualitative Research
| Highly cited | No |
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