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Research -- methodology

Caregiver roles in families affected by Huntington's disease: a qualitative interview study

Aim: The objective of this study was to explore family caregivers' experiences with the impact of Huntington's disease (HD) on the family structure and roles in the family.

Methodology: We interviewed 15 family caregivers in families affected by HD, based on a semi-structured interview guide. The participants were recruited through hospital departments and a lay organisation for HD in Norway. Data from the interviews were analysed with systematic text condensation.

Thu, 07/20/2017 - 15:23

Confirmatory Factor Analysis and Invariance Testing of the Young Carer of Parents Inventory (YCOPI)

Objective: Research into youth caregiving in families where a parent experiences a significant medical condition has been hampered by a lack of contextually sensitive measures of the nature and breadth of young caregiving experiences. This study examined the factor structure and measurement invariance of such a measure called the Young Carer of Parents Inventory (YCOPI; Pakenham et al., 2006) using confirmatory factor analysis across 3 groups of youth.

Thu, 07/20/2017 - 15:21

Children and Adolescents Providing Care to a Parent with Huntington's Disease: Disease Symptoms, Caregiving Tasks and Young Carer Well-Being

Background: Over 30,000 people in the U.S. have Huntington’s disease (HD), a disorder with numerous complicated, long-lasting and stigmatizing symptoms. Caregiving typically falls to the family, yet little is known about the caregiving experience of children and adolescents in the home.

Thu, 07/20/2017 - 15:20

Emotional and Tangible Reciprocity in Middle- and Older-Aged Carers of Adults With Intellectual Disabilities

Reciprocal benefits may exist in relationships between carers and their adult sons/daughters with intellectual disabilities, but the topic has not been widely studied. The present study investigated whether older carers of adult children with intellectual disabilities perceive emotional and tangible reciprocity in their relationships and the association between perceived reciprocity with quality of life. The authors surveyed 91 parental carers (aged 50+ years, mean = 60.8).

Thu, 07/20/2017 - 15:18

A qualitative analysis of changes in relationship dynamics and roles between people with cancer and their primary informal carer

It is widely accepted that cancer is an intersubjective experience that impacts upon the psychological well-being of people with cancer and informal carers, as well as on couple relationships. This qualitative study examined the nature and consequences of cancer on the relationship between informal carers and the person with cancer, from the perspective of Australian cancer carers. Sixty-two carers (42 women and 20 men), across a range of cancer types, stages and relationship dyads took part in semi-structured interviews.

Thu, 07/20/2017 - 15:17

Financial well-being of US parents caring for coresident children and adults with developmental disabilities: An age cohort analysis*

Background Understanding how financial well-being changes through the life course of caregiving parents of children with developmental disabilities is critically important. Methods We analyse SIPP (U.S. Census Bureau) data to describe income poverty, asset poverty, income, net worth, and liquid assets of US parents ( N = 753) of children with developmental disabilities. Results Income and asset poverty was greatest for the youngest and oldest parents.

Thu, 07/20/2017 - 15:16

Capturing the carer's experience: a researcher's reflections

AIM: To reflect on the methodological challenges of conducting a study exploring the effects on quality of life of being an informal carer for a person with palliative heart failure, as well as the factors that influence a carer's perception of caring.

BACKGROUND: There are multi-faceted influences on the positive and negative effects of being a carer for a patient with palliative heart failure. By conducting a mixed methods study the aim was to examine and explore similarities and differences of the phenomenon of being a carer.

Thu, 07/20/2017 - 15:12

Everyday experiences of parents with disabled children

The family is a space for learning that is in constant renewal and enrichment. However, when one of its members has a disability, the family plays a major role in the daily reconstruction of the intimate and social life of its members. And as ageing is inevitable, parents are constantly worried about who will take care of their children. Children become increasingly more dependent as parents face physical limitations in caring for their children.

Thu, 07/20/2017 - 15:11

The need for future alternatives: an investigation of the experiences and future of older parents caring for offspring with learning disabilities over a prolonged period of time

This article reports on the results of a qualitative study (in-depth interviews) carried out in the United Kingdom as part of a larger (two-phased) study investigating the experiences, health and future perspectives of older parent carers (six mothers and two fathers) of offspring with learning disabilities over a prolonged period of time.

Thu, 07/20/2017 - 15:11

Carers of older adults' satisfaction with public mental health service clinicians: a qualitative study

Aims and objectives: The purpose of our paper was to explore primary caregivers' experience of the way public mental health nurses and other mental health clinicians responded to them as primary carers of older adults with mental illness.

Background: As populations age, the prevalence of mental illness in older adults will increase and the burden of care placed on family carers will intensify. While family carers are essential to the well-being and quality of life of older adults with mental illness, they frequently experience marginalisation from clinicians.

Thu, 07/20/2017 - 15:11