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Balancing Duty, Stigma, and Caregiving Needs of PeopleWith Neurodevelopmental or Neurocognitive DisordersDuring a Public Health Emergency in South Asia: AQualitative Study of Carer Experiences

Tjin, Anna ; Goodwin, Anna ; Troy, Carol ; Yeo, Selvie ; Saha, Sanjib LU orcid ; O'Sullivan, Roger ; Leroi, Iracema and Chen, Yaohua (2024) In International Journal of Geriatric Psychiatry 39(11). p.1-12
Abstract
Objective
Individuals with neurodevelopmental and/or neurocognitive disorders (NNDs) have complex, long-term care needs. In Bangladesh, India, and Pakistan, informal carers shoulder the responsibility and strain of providing care for people with NNDs. Intense care demand, societal and cultural care expectations, and lack of support infrastructure often lead to psychosocial strain in this inadequately researched community, particularly during crises such as the COVID-19 pandemic. This study explored and identified specific features of the coping styles exhibited by informal carers of people with NNDs from Bangladesh, India, and Pakistan during the COVID-19 pandemic.

Material and methods
Between June and November 2020, 245... (More)
Objective
Individuals with neurodevelopmental and/or neurocognitive disorders (NNDs) have complex, long-term care needs. In Bangladesh, India, and Pakistan, informal carers shoulder the responsibility and strain of providing care for people with NNDs. Intense care demand, societal and cultural care expectations, and lack of support infrastructure often lead to psychosocial strain in this inadequately researched community, particularly during crises such as the COVID-19 pandemic. This study explored and identified specific features of the coping styles exhibited by informal carers of people with NNDs from Bangladesh, India, and Pakistan during the COVID-19 pandemic.

Material and methods
Between June and November 2020, 245 carers in India, Pakistan, and Bangladesh responded to open-ended questions in the CLIC (Coping with Loneliness, Isolation, and COVID-19) survey. A reflexive thematic analysis was conducted to uncover the underlying themes and identify coping strategies and stressors. A frequency analysis was performed to examine the associations between these themes and carer nationality. Significant tests identified coping styles.

Results
We identified three coping styles: religiosity (Pakistan), caregiving as a natural life path (Bangladesh), and self-care (India). The religiosity and natural life path styles reside on the fatalism/acceptance continuum and suggest an insight-oriented therapeutic approach. Self-care is a problem-solving strategy that calls for a behaviorally oriented approach. Family overreliance on the carer was a concern across all three groups.

Conclusions
The findings underscore the need for accessible support pathways to sustain care standards, ensuring the well-being of carers and care recipients. (Less)
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author
; ; ; ; ; ; and
author collaboration
organization
publishing date
type
Contribution to journal
publication status
published
subject
in
International Journal of Geriatric Psychiatry
volume
39
issue
11
article number
e70010
pages
1 - 12
publisher
John Wiley & Sons Inc.
external identifiers
  • pmid:39558492
  • scopus:85210049369
ISSN
1099-1166
DOI
10.1002/gps.70010
language
English
LU publication?
yes
id
5414d47c-d4ae-4374-85d1-a8deeb2d2810
date added to LUP
2024-11-19 07:52:29
date last changed
2025-06-28 06:10:13
@article{5414d47c-d4ae-4374-85d1-a8deeb2d2810,
  abstract     = {{Objective<br/>Individuals with neurodevelopmental and/or neurocognitive disorders (NNDs) have complex, long-term care needs. In Bangladesh, India, and Pakistan, informal carers shoulder the responsibility and strain of providing care for people with NNDs. Intense care demand, societal and cultural care expectations, and lack of support infrastructure often lead to psychosocial strain in this inadequately researched community, particularly during crises such as the COVID-19 pandemic. This study explored and identified specific features of the coping styles exhibited by informal carers of people with NNDs from Bangladesh, India, and Pakistan during the COVID-19 pandemic.<br/><br/>Material and methods<br/>Between June and November 2020, 245 carers in India, Pakistan, and Bangladesh responded to open-ended questions in the CLIC (Coping with Loneliness, Isolation, and COVID-19) survey. A reflexive thematic analysis was conducted to uncover the underlying themes and identify coping strategies and stressors. A frequency analysis was performed to examine the associations between these themes and carer nationality. Significant tests identified coping styles.<br/><br/>Results<br/>We identified three coping styles: religiosity (Pakistan), caregiving as a natural life path (Bangladesh), and self-care (India). The religiosity and natural life path styles reside on the fatalism/acceptance continuum and suggest an insight-oriented therapeutic approach. Self-care is a problem-solving strategy that calls for a behaviorally oriented approach. Family overreliance on the carer was a concern across all three groups.<br/><br/>Conclusions<br/>The findings underscore the need for accessible support pathways to sustain care standards, ensuring the well-being of carers and care recipients.}},
  author       = {{Tjin, Anna and Goodwin, Anna and Troy, Carol and Yeo, Selvie and Saha, Sanjib and O'Sullivan, Roger and Leroi, Iracema and Chen, Yaohua}},
  issn         = {{1099-1166}},
  language     = {{eng}},
  month        = {{11}},
  number       = {{11}},
  pages        = {{1--12}},
  publisher    = {{John Wiley & Sons Inc.}},
  series       = {{International Journal of Geriatric Psychiatry}},
  title        = {{Balancing Duty, Stigma, and Caregiving Needs of PeopleWith Neurodevelopmental or Neurocognitive DisordersDuring a Public Health Emergency in South Asia: AQualitative Study of Carer Experiences}},
  url          = {{http://dx.doi.org/10.1002/gps.70010}},
  doi          = {{10.1002/gps.70010}},
  volume       = {{39}},
  year         = {{2024}},
}