Care, burden and self-described positive aspects of caring in amyotrophic lateral sclerosis: an exploratory, longitudinal, mixed-methods study
Objectives To explore factors associated with care burden and the self-described positive aspects of caring for a person living with amyotrophic lateral sclerosis (ALS) over time.Design Exploratory longitudinal mixed-methods study.Setting A national multidisciplinary tertiary clinic in Dublin, Irela...
| Main Authors: | , , , , |
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| Format: | Article |
| Language: | English |
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BMJ Publishing Group
2023-01-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/13/1/e064254.full |
| _version_ | 1828057346293628928 |
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| author | Orla Hardiman Mark Heverin Miriam Galvin Éilís Conroy Polly Kennedy |
| author_facet | Orla Hardiman Mark Heverin Miriam Galvin Éilís Conroy Polly Kennedy |
| author_sort | Orla Hardiman |
| collection | DOAJ |
| description | Objectives To explore factors associated with care burden and the self-described positive aspects of caring for a person living with amyotrophic lateral sclerosis (ALS) over time.Design Exploratory longitudinal mixed-methods study.Setting A national multidisciplinary tertiary clinic in Dublin, Ireland.Participants Participants were informal caregivers of people living with ALS (plwALS) attending the national ALS/motor neuron disease Clinic Dublin. This study focuses on informal caregivers who completed five consecutive interviews (n = 17) as part of a larger multisite study, over the course of 2.5 years. Participants were over the age of 18. Formal paid caregivers were not included.Outcome measures Data were collected on demographic and well-being measures and an open-ended question asked about positive aspects of caregiving. Relevant statistical analysis was carried out on quantitative data and qualitative data were analysed thematically.Results The caregivers in this study were predominantly female and spouse/partners of the plwALS. Hours of care provided and self-assessed burden increased substantially over time, psychological distress reached clinical significance and quality of life remained relatively stable. Positive aspects identified were thematised as meaning in life and personal satisfaction and varied in relative frequency across phases of the caregiving trajectory.Conclusions The co-occurrence of negative and positive factors influences the experiences of informal caregivers in ALS. It is important to explore and acknowledge positive aspects, how they develop and are sustained in order to inform supportive services. The cyclical adaptation identified in this study provides evidence for time sensitive targeted supports. |
| first_indexed | 2024-04-10T21:11:06Z |
| format | Article |
| id | doaj.art-847bb8c0dd9a446eb67afc9c635679b1 |
| institution | Directory Open Access Journal |
| issn | 2044-6055 |
| language | English |
| last_indexed | 2024-04-10T21:11:06Z |
| publishDate | 2023-01-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj.art-847bb8c0dd9a446eb67afc9c635679b12023-01-20T21:30:08ZengBMJ Publishing GroupBMJ Open2044-60552023-01-0113110.1136/bmjopen-2022-064254Care, burden and self-described positive aspects of caring in amyotrophic lateral sclerosis: an exploratory, longitudinal, mixed-methods studyOrla Hardiman0Mark Heverin1Miriam Galvin2Éilís Conroy3Polly Kennedy4Computational Neuroimaging Group, Trinity College Dublin, Dublin, IrelandAcademic Unit of Neurology, Trinity Biomedical Sciences Institute, Dublin 2, Ireland2 Academic Unit of Neurology, Trinity Biomedical Sciences Institute, University of Dublin Trinity College, Dublin, IrelandAcademic Unit of Neurology, Trinity College Dublin, Dublin, IrelandAcademic Unit of Neurology, Trinity College Dublin, Dublin, IrelandObjectives To explore factors associated with care burden and the self-described positive aspects of caring for a person living with amyotrophic lateral sclerosis (ALS) over time.Design Exploratory longitudinal mixed-methods study.Setting A national multidisciplinary tertiary clinic in Dublin, Ireland.Participants Participants were informal caregivers of people living with ALS (plwALS) attending the national ALS/motor neuron disease Clinic Dublin. This study focuses on informal caregivers who completed five consecutive interviews (n = 17) as part of a larger multisite study, over the course of 2.5 years. Participants were over the age of 18. Formal paid caregivers were not included.Outcome measures Data were collected on demographic and well-being measures and an open-ended question asked about positive aspects of caregiving. Relevant statistical analysis was carried out on quantitative data and qualitative data were analysed thematically.Results The caregivers in this study were predominantly female and spouse/partners of the plwALS. Hours of care provided and self-assessed burden increased substantially over time, psychological distress reached clinical significance and quality of life remained relatively stable. Positive aspects identified were thematised as meaning in life and personal satisfaction and varied in relative frequency across phases of the caregiving trajectory.Conclusions The co-occurrence of negative and positive factors influences the experiences of informal caregivers in ALS. It is important to explore and acknowledge positive aspects, how they develop and are sustained in order to inform supportive services. The cyclical adaptation identified in this study provides evidence for time sensitive targeted supports.https://bmjopen.bmj.com/content/13/1/e064254.full |
| spellingShingle | Orla Hardiman Mark Heverin Miriam Galvin Éilís Conroy Polly Kennedy Care, burden and self-described positive aspects of caring in amyotrophic lateral sclerosis: an exploratory, longitudinal, mixed-methods study BMJ Open |
| title | Care, burden and self-described positive aspects of caring in amyotrophic lateral sclerosis: an exploratory, longitudinal, mixed-methods study |
| title_full | Care, burden and self-described positive aspects of caring in amyotrophic lateral sclerosis: an exploratory, longitudinal, mixed-methods study |
| title_fullStr | Care, burden and self-described positive aspects of caring in amyotrophic lateral sclerosis: an exploratory, longitudinal, mixed-methods study |
| title_full_unstemmed | Care, burden and self-described positive aspects of caring in amyotrophic lateral sclerosis: an exploratory, longitudinal, mixed-methods study |
| title_short | Care, burden and self-described positive aspects of caring in amyotrophic lateral sclerosis: an exploratory, longitudinal, mixed-methods study |
| title_sort | care burden and self described positive aspects of caring in amyotrophic lateral sclerosis an exploratory longitudinal mixed methods study |
| url | https://bmjopen.bmj.com/content/13/1/e064254.full |
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