Type

Journal Article

Authors

Orla Hardiman
Niall Pender
Iain Mays
Bernie Corr
Síle Carney
Miriam Galvin

Subjects

Psychiatry

Topics
qualitative analysis qualitative data amyotrophic lateral sclerosis als support services thematic analysis motor neuron disease mnd amyotrophic lateral sclerosis motor neuron disease caregivers statistical analysis healthcare professionals

Needs of informal caregivers across the caregiving course in amyotrophic lateral sclerosis: a qualitative analysis. (2018)

Abstract Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), is a debilitating terminal condition. Informal caregivers are key figures in ALS care provision. The physical, psychological and emotional impact of providing care in the home requires appropriate assistance and support. The objective of this analysis is to explore the needs of informal ALS caregivers across the caregiving course. In an open-ended question as part of a semistructured interview, caregivers were asked what would help them in their role. Interviews took place on three occasions at 4-month to 6-month intervals. Demographic, burden and quality of life data were collected, in addition to the open-ended responses. We carried out descriptive statistical analysis and thematic analysis of qualitative data. Home interviews at baseline (n=81) and on two further occasions (n=56, n=41) with informal caregivers of people with ALS attending the National ALS/MND Clinic at Beaumont Hospital, Dublin, Ireland. The majority of caregivers were family members. Hours of care provided and caregiver burden increased across the interview series. Thematic analysis identified what would help them in their role, and needs related to external support and services, psychological-emotional factors, patient-related behaviours, a cure and 'nothing'. Themes were interconnected and their prevalence varied across the interview time points. This study has shown the consistency and adaptation in what caregivers identified as helpful in their role, across 12-18 months of a caregiving journey. Support needs are clearly defined, and change with time and the course of caregiving. Caregivers need support from family, friends and healthcare professionals in managing their tasks and the emotional demands of caregiving. Identifying the specific needs of informal caregivers should enable health professionals to provide tailored supportive interventions.
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Full list of authors on original publication

Orla Hardiman, Niall Pender, Iain Mays, Bernie Corr, Síle Carney, Miriam Galvin

Experts in our system

1
Orla Hardiman
Trinity College Dublin
Total Publications: 156
 
2
Niall Pender
Trinity College Dublin
Total Publications: 30
 
3
Iain Mays
Trinity College Dublin
Total Publications: 6
 
4
Bernie Corr
Trinity College Dublin
Total Publications: 5
 
5
Síle Carney
National College Ireland
Total Publications: 10
 
6
Miriam Galvin
Trinity College Dublin
Total Publications: 9