"A monster that lives in our lives": experiences of caregivers of people with motor neuron disease and identifying avenues for support.
amyotrophic lateral sclerosis
burden
carers
motor neuron disease
qualitative
Journal
BMJ supportive & palliative care
ISSN: 2045-4368
Titre abrégé: BMJ Support Palliat Care
Pays: England
ID NLM: 101565123
Informations de publication
Date de publication:
Dec 2019
Dec 2019
Historique:
received:
02
11
2015
revised:
15
01
2016
accepted:
04
04
2016
pubmed:
30
4
2016
medline:
4
3
2020
entrez:
30
4
2016
Statut:
ppublish
Résumé
A developing body of evidence has provided valuable insight into the experiences of caregivers of people with motor neuron disease; however, understandings of how best to support caregivers remain limited. This study sought to understand concepts related to the motor neuron disease caregiver experience which could inform the development of supportive interventions. A qualitative thematic analysis of a one-off semistructured interview with caregivers was undertaken. Caregivers of people with motor neuron disease were recruited from a progressive neurological diseases clinic in Melbourne, Australia. 15 caregivers participated. Three key themes were identified: (1) The Thief: the experience of loss and grief across varied facets of life; (2) The Labyrinth: finding ways to address ever changing challenges as the disease progressed; (3) Defying fate: being resilient and hopeful as caregivers tried to make the most of the time remaining. Caregivers are in need of more guidance and support to cope with experiences of loss and to adapt to changeable care giving duties associated with disease progression. Therapeutic interventions which target these experiences of loss and change are worth investigation. ACTRN12615000120572, pre-results.
Sections du résumé
BACKGROUND
BACKGROUND
A developing body of evidence has provided valuable insight into the experiences of caregivers of people with motor neuron disease; however, understandings of how best to support caregivers remain limited.
AIM
OBJECTIVE
This study sought to understand concepts related to the motor neuron disease caregiver experience which could inform the development of supportive interventions.
DESIGN
METHODS
A qualitative thematic analysis of a one-off semistructured interview with caregivers was undertaken.
SETTING/PARTICIPANTS
METHODS
Caregivers of people with motor neuron disease were recruited from a progressive neurological diseases clinic in Melbourne, Australia.
RESULTS
RESULTS
15 caregivers participated. Three key themes were identified: (1) The Thief: the experience of loss and grief across varied facets of life; (2) The Labyrinth: finding ways to address ever changing challenges as the disease progressed; (3) Defying fate: being resilient and hopeful as caregivers tried to make the most of the time remaining.
CONCLUSIONS
CONCLUSIONS
Caregivers are in need of more guidance and support to cope with experiences of loss and to adapt to changeable care giving duties associated with disease progression. Therapeutic interventions which target these experiences of loss and change are worth investigation.
TRIAL REGISTRATION NUMBER
BACKGROUND
ACTRN12615000120572, pre-results.
Identifiants
pubmed: 27125270
pii: bmjspcare-2015-001057
doi: 10.1136/bmjspcare-2015-001057
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
e27Informations de copyright
Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.