Search results for ‘Subject term:"huntingtons disease"’ Sort:
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"I Just learned by observation and trial and error": exploration of young caregiver training and knowledge in families living with rare neurological disorders
- Authors:
- KAVANAUGH Melinda S., CHO Chi C., HOWARD Megan
- Journal article citation:
- Child and Youth Care Forum, 48(4), 2019, pp.479-492.
- Publisher:
- Springer
Background: Caregiver skill training and support programs are traditionally offered to adult caregivers, leaving out the over 1 million children and youth who provide care (“young caregivers”). Skill building and support programs are critical to caregiver and patient well-being and can be informed by the knowledge of current caregiver skill and support acquisition. Objective: Using data from three studies of neurological disorders, this paper provides initial data on how young caregivers acquire caregiver skills and training needed to inform young caregiver programs. Method: Mixed method data drawn from three studies of young caregivers in neurological disorders, Huntington’s disease (HD) and amyotrophic lateral sclerosis (ALS). Results: Youth (N = 96), ranged in age from 8 to 20, care for a family member with HD or ALS, and involved in tasks ranging from assistance with walking (76%), toileting (32%) and administering medications (37%). The majority (N = 59; 61%), received no training or guidance. When asked how they knew what to do, six main themes arose: (1) patient tells me what to do, (2) watching and observing, (3) common sense, (4) treating patient like child or self, (5) process of figuring it out, and (6) don’t know. Conclusion: Young caregivers in neurological disorders engage in numerous caregiving tasks with little formal guidance, despite a desire for training and education by adults and professionals. Reliance on various skill methods and lack of formal guidance, points to the need for health care professionals to develop education and training programs targeting this isolated and underserved population, improving the well-being of both caregiver and care recipient. (Edited publisher abstract)
Children and adolescents providing care to a parent with Huntington’s Disease: disease symptoms, caregiving tasks and young carer well-being
- Author:
- KAVANAUGH Melinda S.
- Journal article citation:
- Child and Youth Care Forum, 43(6), 2014, pp.675-690.
- Publisher:
- Springer
Objective: Guided by the stress process model, this exploratory study sought to describe children and adolescents who care for a parent with Huntington’s disease (HD) and their caregiving experience, by detailing previously unknown relationships between caregiving, parent/child conflict, school problems, and psychological well-being of child/adolescent caregivers. Methods: This cross-sectional study used semi-structured interviews with a purposive sample of 40 children and adolescents, aged 12–20, who care for a parent with HD. Data was analysed using descriptive and correlational statistics. Measures included the Children’s’ Depression Inventory, The Conflict Behaviour Questionnaire, and the Multidimensional Assessment of Caring Activities. Results: Study participants have substantial caregiving responsibilities (>11), with half providing personal care to a parent. The majority experienced school problems and conflict with parents (60 and 92 % respectively). Caregiving tasks were associated with problems with school and conflict with the ill parent. Furthermore, parental symptoms were associated with poor psychological wellbeing, parental conflict, and school problems for the caregivers. Conclusion: Children and adolescents are involved in numerous tasks and describe difficulties with their daily life and well-being. Results highlight the need for the development of support services for caregivers, as well best care practices for problematic HD symptoms. Study outcomes address minimizing the potential for negative caregiving experiences of these vulnerable caregivers. (Edited publisher abstract)
"It'd be nice if someone asked me how I was doing. Like, 'cause I will have an answer": exploring support needs of young carers of a parent with Huntington's disease
- Authors:
- KAVANAUGH Melinda S., NOH Hyunjin, STUDER Lynette
- Journal article citation:
- Vulnerable Children and Youth Studies, 10(1), 2015, pp.12-25.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
This study explores the support needs of children and adolescents aged 12-20, who provide care to a parent with Huntington's disease (HD), often referred to as 'young carers.' Stigmatizing symptoms of HD, including depression, personality change, psychosis, and involuntary movements, often leave family caregivers isolated with little support. Increasing attention is paid to the support of adult caregivers, yet little attention has been given to young carers in the family, including support needs they describe as important. Individual interviews were conducted with 40 young carers from 18 states in the USA, recruited through the Huntington's Disease Society of America. Participants were asked two open-ended questions: (1) what things can people do to help you care for your mom/dad? (2) what things do you need to help you care for your mom/dad that you do not currently have? Content analysis was used to analyse the interview transcripts. Data analysis elicited three main categories associated with support needs: instrumental support, emotional support, and personal needs. Each category detailed the need for friends to be understanding, others to show care for the caregiver and for the young carers to receive assistance with caregiving tasks. Also identified were a need for information and advice about caregiving, and the creation of outlets, such as support groups, to help them feel less alone and to normalise their situation. The study results provide clear implications for social work and health care professionals in designing support programs and services targeted to young carers of a parent with HD. (Edited publisher abstract)
Younger people with dementia: planning, practice and development
- Editors:
- COX Sylvia, KEADY John
- Publisher:
- Jessica Kingsley
- Publication year:
- 1999
- Pagination:
- 328p.,bibliog.
- Place of publication:
- London
Includes chapters on: a medical overview of assessment and service responses for younger people with dementia; epidemiological issues; needs assessment and individual and strategic care planning; multi agency perspectives and person centred planning; HIV related brain impairment; Huntington's Disease; learning disabilities and dementia; alcohol related brain impairment; experiencing the worlds of younger people with dementia; negotiating caregiving and employment; young carers; family caregiving; psychosocial interventions; support groups for people with early stage Alzheimer's Disease; training and younger people with dementia; and developing an agenda for change in service provision.