Conducting Research with Stigmatized Populations

Maestre, Juan F.; Eikey, Elizabeth V.; Warner, Mark; Yarosh, Svetlana; Pater, Jessica; Jacobs, Maia; Marcu, Gabriela; Shih, Patrick C.

doi:10.1145/3272973.3273003

Cited by 25 publications

(2 citation statements)

References 18 publications

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“…Hence, when they are timely identified, we can take measures to prevent and manage the internalized stigma of COVID-19. However, due to the different scales to measure internalized stigma and methodologies used while conducting the research, it is a great challenge to study their correlates among the available studies ( 56 ).…”

Section: Discussionmentioning

confidence: 99%

Internalized stigma related to COVID-19 and its psychosocial and mental health correlates: a multicentric health facility based observational study from Nepal

Shah,

Mahapatra,

Singh

et al. 2024

Front. Psychiatry

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IntroductionThe COVID-19 pandemic has led to physical and psychological complications and social consequences in the form of illness-related stigma. This study aimed (1) to assess the sociodemographic and clinical variable, as well as COVID-19 related knowledge and perception of persons admitted for COVID-19/Suspected COVID-19 in Nepal, (2) to determine their levels of COVID-19- related internalized stigma, depression, and anxiety symptoms, and (3) to evaluate the correlates of COVID-19- related internalized stigma.Materials and methodsIt was a cross-sectional exploratory study with a convenience sample of 395 participants (306 confirmed cases, 89 suspected cases) conducted between July–October 2020 in four health facilities in Madhesh and Lumbini provinces of Nepal. We used a semi-structured questionnaire to assess sociodemographic details, clinical information, COVID-19-related knowledge, perception, COVID-19-related internalized stigma, and the Hamilton Anxiety Depression Scale (HADS) in Nepali language. Descriptive statistics, correlation analyses, and linear regression analyses were performed. The level of statistical significance was considered at p < 0.05.ResultsAround 23.3% of the patients had anxiety symptoms, 32.9% had depressive symptoms, and 20.3% had high COVID-19-related internalized stigma (mean ISMI score: 2.51–4.00). Linear regression analyses showed a significant positive association of COVID-19-related internalized stigma total score, with the following eight factors, i.e., no income in the past one month (p = 0.013), below average socioeconomic status (p = 0.004), anxiety symptoms (p = <0.001), depressive symptoms (p = <0.001), recent testing positive for COVID-19 (p = <0.001), involuntary admission (p = <0.001), prior experience of being in isolation and quarantine (p = 0.045), and those who blame others for COVID-19 (p = 0.025).ConclusionCOVID-19 survivors and suspects are vulnerable to symptoms of depression, anxiety, and COVID-19-related internalized stigma. For the first time from Nepal, our data suggests that COVID-19-related internalized stigma is associated with anxiety and depression symptoms, perceived below-average socioeconomic status, involuntary admission, prior experience of being in isolation and quarantine, recent COVID-19 positive report, self-blame, below-average socioeconomic status and no income in the past one month. Mitigating and preventing internalized stigma associated with a public health crisis such as COVID-19 is imperative by diagnosing and treating such mental health issues early and designing interventions and policies especially targeting vulnerable populations focusing on their economic background and socio-cultural beliefs.

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Section: Discussionmentioning

confidence: 99%

Internalized stigma related to COVID-19 and its psychosocial and mental health correlates: a multicentric health facility based observational study from Nepal

Shah,

Mahapatra,

Singh

et al. 2024

Front. Psychiatry

View full text Add to dashboard Cite

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“…This task is made more difficult for claimants by the need to gather evidence and present facts on complex forms [23] in a manner that matches the (often abstract) assessment criteria [53]. These also raise practical research challenges, including possible difficulties obtaining informed consent [50], persuading participants to take part [46] and role definition [13].…”

Section: Introductionmentioning

confidence: 99%

PIP Kit: An Exploratory Investigation into using Lifelogging to support Disability Benefit Claimants

Watson

Kirkham

Kharrufa

2020

Proceedings of the 2020 CHI Conference on Human Factors in Computing Systems

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Disability assessment processes are complex and stressful, with claimants finding it challenging to prepare an effective account of their disabilities to support their claim. This project focuses on a disability benefit called Personal Independence Payment (PIP), which is received by millions of people with disabilities in the UK. We present a multistage exploratory investigation into how lifelogging could help address the challenges claimants have in accessing disability benefits. In the first study, benefit advisors participated in interviews and workshops to inform the design of PIP Kit, a highly customisable prototype elicitation diary to help disability claimants articulate their experiences. In the second study, PIP Kit was trialled by benefit claimants whilst making their actual PIP claims. We found that PIP Kit helped empower claimants in understanding the claim process and assisted in building arguments for their claims. We also have identified clear principles for supporting disability benefit claimants with technological interventions.

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Toward a Disability-Centric Model of User Participation in Accessibility Efforts: Lessons from a Case Study of School Children

Gavine

Spillers

2020

Lecture Notes in Computer Science

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Conducting Research with Stigmatized Populations

Cited by 25 publications

References 18 publications

Internalized stigma related to COVID-19 and its psychosocial and mental health correlates: a multicentric health facility based observational study from Nepal

Internalized stigma related to COVID-19 and its psychosocial and mental health correlates: a multicentric health facility based observational study from Nepal

PIP Kit: An Exploratory Investigation into using Lifelogging to support Disability Benefit Claimants

Toward a Disability-Centric Model of User Participation in Accessibility Efforts: Lessons from a Case Study of School Children

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