Balancing Duty, Stigma, and Caregiving Needs of People With Neurodevelopmental or Neurocognitive Disorders During a Public Health Emergency in South Asia: A Qualitative Study of Carer Experiences

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.