A review of caregiver distress in epilepsy in India: Current issues and future directions for research

Bapat, Deepa; Shankar, Aparna

doi:10.1016/j.yebeh.2021.107787

Cited by 7 publications

(4 citation statements)

References 30 publications

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“…Women report high caregiver “burden” and make up the largest proportion of caregivers (Kumar and Gupta, 2014; Mandowara et al, 2020; Madavanakadu et al, 2021). Additionally, caregivers who are socially isolated (Jagannathan et al, 2014; Mathias et al, 2019; Bapat and Shankar, 2021), under financial strain (Bapat and Shankar, 2021; Madavanakadu et al, 2021), or less educated (Jagannathan et al, 2014; Mandowara et al, 2020; Bapat and Shankar, 2021; Menon et al, 2022) are more vulnerable to adverse mental health. A further challenge is that access to quality affordable primary health care in India is limited, especially rurally (Patel et al, 2015).…”

Section: Introductionmentioning

confidence: 99%

Scaling a group intervention to promote caregiver mental health in Uttarakhand, India: A mixed-methods implementation study

Agarwal,

Bailie,

Rana

et al. 2023

Camb. prisms Glob. ment. health

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Caregivers are integral to health and social care systems in South Asian countries yet are themselves at higher risk of mental illness. Interventions to support caregiver mental health developed in high-income contexts may be contextually inappropriate in the Global South. In this mixed-methods study, we evaluated the implementation and scaling of a locally developed mental health group intervention for caregivers and others in Uttarakhand, India. We describe factors influencing implementation using the updated Consolidated Framework for Implementation Research, and selected implementation outcomes. Key influencing factors we found in common with other programs included: an intervention that was relevant and adaptable; family support and stigma operating in the outer setting; training and support for lay health worker providers, shared goals, and relationships with the community and the process of engaging with organisational leaders and service users within the inner setting. We identified further factors including the group delivery format, competing responsibilities for caregivers and opportunities associated with the partnership delivery model as influencing outcomes. Implementation successfully reached target communities however attrition of 20% of participants highlights the potential for improving outcomes by harnessing enablers and addressing barriers. Findings will inform others implementing group mental health and caregiver interventions in South Asia.

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Section: Introductionmentioning

confidence: 99%

Scaling a group intervention to promote caregiver mental health in Uttarakhand, India: A mixed-methods implementation study

Agarwal,

Bailie,

Rana

et al. 2023

Camb. prisms Glob. ment. health

View full text Add to dashboard Cite

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“…However, a large proportion of those with disability who receive care do not have a formal diagnosis (Chakrabarti, 2016 ). Across different disabilities, commonly identified predictors of higher caregiver ‘burden’ or poorer mental health in these studies include female gender (Kumar and Gupta, 2014 ; Mandowara et al, 2020 ; Madavanakadu et al, 2022 ), social isolation (Jagannathan et al, 2014 ; Bapat and Shankar, 2021 ), economic disadvantage (Bapat and Shankar, 2021 ; Madavanakadu et al, 2022 ), fewer years of education (Jagannathan et al, 2014 ; Mandowara et al, 2020 ; Bapat and Shankar, 2021 ; Menon et al, 2022 ) and higher care-needs (Brinda et al, 2014 ; Mandowara et al, 2020 ). Finally, societal stigma operates towards caregivers of people with particular disabilities such as epilepsy (Bapat and Shankar, 2021 ) and psychosocial disability (Mathias et al, 2015a ; Singh et al, 2016 ; Mathias et al, 2019 ; Dijkxhoorn et al, 2022 ), as well as towards the people they provide care for.…”

Section: Introductionmentioning

confidence: 99%

Does the Nae Umeed group intervention improve mental health and social participation? A pre–post study in Uttarakhand, India

Bailie¹,

Pillai²,

Singh³

et al. 2023

Camb. prisms Glob. ment. health

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There are few evidence-based interventions to support caregiver mental health developed for low-and middle-income countries. Nae Umeed is a community-based group intervention developed with collaboratively with local community health workers in Uttarakhand, India primarily to promote mental wellbeing for caregivers and others. This pre-post study aimed to evaluate whether Nae Umeed improved mental health and social participation for people with mental distress, including caregivers. The intervention consisted of 14 structured group sessions facilitated by community health workers. Among 115 adult participants, 20% were caregivers and 80% were people with disability and other vulnerable community members; 62% had no formal education and 92% were female. Substantial and statistically significant improvements occurred in validated psychometric measures for mental health (12-Item General Health Questionnaire, Patient Health Questionnaire-9) and social participation (Participation Scale). Improvements occurred regardless of caregiver status. This intervention addressed mental health and social participation for marginalised groups that are typically without access to formal mental health care and findings suggest Nae Umeed improved mental health and social participation; however, a controlled community trial would be required to prove causation. Community-based group interventions are a promising approach to improving the mental health of vulnerable groups in South Asia.

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“…The diagnosis of epilepsy in a child often and understandably causes psychological adjustment difficulties in the parents. 2 , 3 First, the daily care of a child with epilepsy is usually resource demanding, which implies that parents need tremendous psychosocial support. Unfortunately, many parents report limited coping resources and less social support after their child's diagnosis.…”

Section: Introductionmentioning

confidence: 99%

“…Like other childhood chronic illnesses, given the burden of daily treatment tasks, reports from different nations show that epilepsy is not only an individual problem but is also a family problem. The diagnosis of epilepsy in a child often and understandably causes psychological adjustment difficulties in the parents 2,3 . First, the daily care of a child with epilepsy is usually resource demanding, which implies that parents need tremendous psychosocial support.…”

Section: Introductionmentioning

confidence: 99%

Cognitive deficiency, parental relationship, and coping strategies are related with anxiety and depression among parents of children with epilepsy

Ren

Yang

2022

Chronic Diseases and Translational Medicine

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Background: The diagnosis of epilepsy in a child often and understandably causes psychological adjustment difficulties in the parents. To help parents of children with epilepsy cope with stress, it is important to understand how parents cope with the sickness of their child. The objective of this study was to assess factors related to the state of anxiety and depression among parents of children with epilepsy. Methods: The present study was a cross-sectional study, and the data were collected through an anonymous, Internet-based survey platform between October 2018 and October 2019 from 250 participants aged 22-65 years. Participants were invited to fill questionnaires include socioeconomic questionnaire, anxiety, depression, and coping strategies scale. Result: Among the parents of children with epilepsy, 48.8% (122/250) had depressive symptoms (Patient Health Questionnaire-9 [PHQ-9] score >4) and 46.4% (116/250) had anxiety symptoms (7-item Generalized Anxiety Disorder [GAD-7] score >5). Depression among parents of children with epilepsy was significantly associated with comorbidity (odds ratio [OR] = 0.392, 95% CI = 0.182-0.846), a poor parental relationship (OR = 0.283, 95% CI = 0.130-0.614), positive coping (OR = 0.947, 95% CI = 0.903-0.992), and negative coping (OR = 1.287, 95% CI = 1.179-1.405). Anxiety among parents of children with epilepsy was significantly associated with a poor parental relationship (OR = 0.416, 95% CI = 0.207-0.835) and negative coping (OR = 1.155, 95% CI = 1.087-1.228). Conclusions: The present study indicates the importance of couple support and providing effective coping to make parents of children with epilepsy more resilient in the presence of negative life events, especially for parents of children with comorbidity with cognitive deficiency. K E Y W O R D S combability, coping strategies, couple relationship, epilepsy, parents Highlights • Parents of children with epilepsy are at high risk of experiencing anxiety and depression.

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A review of caregiver distress in epilepsy in India: Current issues and future directions for research

Cited by 7 publications

References 30 publications

Scaling a group intervention to promote caregiver mental health in Uttarakhand, India: A mixed-methods implementation study

Scaling a group intervention to promote caregiver mental health in Uttarakhand, India: A mixed-methods implementation study

Does the Nae Umeed group intervention improve mental health and social participation? A pre–post study in Uttarakhand, India

Cognitive deficiency, parental relationship, and coping strategies are related with anxiety and depression among parents of children with epilepsy

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