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Conceptual frameworks for understanding the acceptability and feasibility of the minimally invasive autopsy to determine cause of death: Findings from the CADMIA Study in western Kenya.

ABSTRACT: Establishing the cause of death (CoD) is critical to better understanding health and prioritizing health investments, however the use of full post-mortem examination is rare in most low and middle-income counties for multiple reasons. The use of minimally invasive autopsy (MIA) approaches, such as needle biopsies, presents an alternate means to assess CoD. In order to understand the feasibility and acceptability of MIA among communities in western Kenya, we conducted focus groups and in-depth interviews with next-of-kin of recently deceased persons, community leaders and health care workers in Siaya and Kisumu counties. Results suggest two conceptual framework can be drawn, one with facilitating factors for acceptance of MIA due to the ability to satisfy immediate needs related to interest in learning CoD or protecting social status and honoring the deceased), and one framework covering barriers to acceptance of MIA, for reasons relating to the failure to serve an existing need, and/or the exacerbation of an already difficult time.

SUBMITTER: Oruko K

PROVIDER: S-EPMC7735626 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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Conceptual frameworks for understanding the acceptability and feasibility of the minimally invasive autopsy to determine cause of death: Findings from the CADMIA Study in western Kenya.

Oruko Kelvin K Maixenchs Maria M Phillips-Howard Penelope P Ondire Maureen M Akelo Clarah C Sanz Ariadna A Ordi Jaume J Menéndez Clara C Bassat Quique Q Odhiambo Frank O FO Munguambe Khatia K

PloS one 20201214 12

Establishing the cause of death (CoD) is critical to better understanding health and prioritizing health investments, however the use of full post-mortem examination is rare in most low and middle-income counties for multiple reasons. The use of minimally invasive autopsy (MIA) approaches, such as needle biopsies, presents an alternate means to assess CoD. In order to understand the feasibility and acceptability of MIA among communities in western Kenya, we conducted focus groups and in-depth in ...[more]

PMID: 33315918

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Project description:Worldwide, nearly six million children under the age of five (<5s) die annually, a substantial proportion of which are due to preventable and treatable diseases. Efforts to reduce child mortality indicators in the most affected regions are often undermined by a lack of accurate cause of death data. To generate timely and more accurate causes of death data for <5s, the Child Health and Mortality Prevention Surveillance (CHAMPS) Network established mortality surveillance in multiple countries using Minimally Invasive Tissue Sampling (MITS) in <5 deaths. Here we present acceptability of MITS by community members and healthcare workers in Siaya and Kisumu counties, western Kenya. From April 2017 to February 2018, we conducted 40 in-depth interviews and five focus group discussions with healthcare workers and community members, before and during CHAMPS implementation. Participants were purposively selected. Field observations to understand traditional death-related practices were also performed. Interviews were transcribed into Nvivo 11.0 for data organization and management. Analysis was guided by the grounded theory approach. Facilitators of acceptability were desire to understand why death occurred, timely performance of MITS procedures, potential for MITS results in improving clinical practice and specific assistance provided to families by the CHAMPS program. However, cultural and religious beliefs highlighted important challenges to acceptability, including CHAMPS teams recruiting after a child's death, rumours and myths, unmet expectations from families, and fear by healthcare workers that some families could use MITS results to sue for negligence. Increasing MITS uptake requires sustained strategies to strengthen the identified facilitators of acceptability and simultaneously address the barriers. MITS acceptance will contribute to better characterization of causes of death and support the development of improved interventions aimed at reducing <5 mortality.

Project description:PurposeAdjunct cervical cancer screening methods are under evaluation to improve the diagnostic accuracy of human papillomavirus (HPV)-based screening in low- and middle-income countries. We evaluated the feasibility and acceptability of smartphone-based cervicography among HPV-positive women living with HIV (WLWH) in Western Kenya.MethodsHPV-positive WLWH of 25-49 years of age enrolled in a clinical trial (ClinicalTrials.gov identifier: NCT04191967) had digital images of the cervix taken using a smartphone by a nonphysician provider following visual inspection with acetic acid. All participants had colposcopy-directed biopsy before treatment. Cervical images were evaluated by three off-site colposcopists for quality, diagnostic utility, and assigned a presumed diagnosis. We determined the proportion of images rates as low, medium, or high quality, interobserver agreement using Cohen's Kappa statistic, and the off-site colposcopist's sensitivity and specificity for diagnosis of cervical intraepithelial neoplasia grade 2 or worse (CIN2+) compared with histopathology. Acceptability was evaluated using a questionnaire.ResultsOne hundred sixty-four HPV-positive WLWH underwent cervicography during the study period. Mean age was 37.3 years. Images from the first 94 participants were evaluated by off-site colposcopists, with a majority (70.9%) rated as high quality. Off-site colposcopists had a sensitivity ranging from 21.4% (95% CI, 0.06 to 0.43) to 35.7% (95% CI, 0.26 to 0.46) and a specificity between 85.5% (95% CI, 0.81 to 0.90) to 94.9% (95% CI, 0.92 to 0.98) for diagnosis of CIN2+ based compared with histopathology. The majority of women, 99.4%, were comfortable having an image of their cervix taken as part of screening.ConclusionCervicography by a nonphysician provider as an adjunct to HPV-based screening among WLWH in a low- and middle-income country setting is feasible and acceptable. However, low sensitivity for diagnosis of CIN2+ by off-site expert colposcopists highlights the limitations of cervicography.

Project description:The minimally invasive autopsy (MIA), an innovative approach for obtaining post-mortem samples of key organs, is increasingly being recognized as a robust methodology for cause of death (CoD) investigation, albeit so far limited to pilot studies and research projects. A better understanding of the real causes of death in middle- and low-income countries, where underlying causes of death are seldom determined, would allow improved health planning, more targeted prioritization of available resources and the implementation of coherent public health policies. This paper discusses lessons learnt from the implementation of a Feasibility and Acceptability (F&A) study evaluating the MIA approach in five countries: Gabon, Kenya, Mali, Mozambique and Pakistan. This article reports the methodological choices made to document sociocultural and religious norms around death, to examine community and relatives' attitudes and perceptions towards MIA, and to identify factors motivating the MIA's acceptance and refusal. We used ethnography, grounded theory and framework method approaches. In-depth and semi-structured interviews and focus group discussions with key informants, including next of kin of deceased individuals and healthcare providers, were conducted. Participant observation and direct observation of procedures and ceremonies around death were organized in all study sites. In Mozambique, MIA procedures were observed and case studies conducted. The implementation of this F&A protocol has provided critical lessons that could facilitate the future implementation of post-mortem procedures for CoD investigation. These include the need for early community engagement, staff training and preparedness, flexibility to adapt the protocol, gathering qualitative data from diverse sources, and triangulation of the data. We have applied a rigorous, effective and culturally sensitive methodological approach to assess the F&A of MIA in resource-constrained settings. We strongly recommend that such an approach is applied in settings where MIAs or similar post-mortem sensitive procedures are to be introduced.

Project description:BackgroundThe majority of women living in rural Kenya access antenatal care (ANC) late in pregnancy, and approximately 20% have an unmet need for family planning (FP). This study aimed to determine whether training community health volunteers (CHVs) to deliver urine pregnancy testing (UPT), post-test counselling, and referral to care was an acceptable and feasible intervention to support timely initiation of ANC and uptake of FP.MethodsWe applied community-based participatory methods to design and implement the pilot intervention between July 2018 and May 2019. We conducted qualitative content analysis of 12 pre-intervention focus group discussions (FGDs) with women, men, and CHVs, and of 4 post-intervention FGDs with CHVs, each with 7-9 participants per FGD group. Using a pragmatic approach, we conducted inductive line-by-line coding to generate themes and subthemes describing factors that positively or negatively contributed to the intervention's acceptability and feasibility, in terms of participants' views and the intervention aims.ResultsWe found that CHV-delivered point of care UPT, post-test counselling, and referral to care was an acceptable and feasible intervention to increase uptake of ANC, FP, and other reproductive healthcare services. Factors that contributed to acceptability were: (1) CHV-delivery made UPT more accessible; (2) UPT and counselling supported women and men to build knowledge and make informed choices, although not necessarily for women with unwanted pregnancies interested in abortion; (3) CHVs were generally trusted to provide counselling, and alternative counselling providers were available according to participant preference. A factor that enhanced the feasibility of CHV delivering UPT and counselling was CHV's access to appropriate supplies (e.g. carrying bags). However, factors that detracted from the feasibility of women actually accessing referral services after UPT and counselling included (1) downstream barriers like cost of travel, and (2) some male community members' negative attitudes toward FP. Finally, improved financial, educational, and professional supports for CHVs would be needed to make the intervention acceptable and feasible in the long-term.ConclusionTraining CHVs in rural western Kenya to deliver UPT, post-test counselling, and referral to care was acceptable and feasible to men, women, and CHVs in this context, and may promote early initiation of ANC and uptake of FP. Additional qualitative work is needed to explore implementation challenges, including issues related to unwanted pregnancies and abortion, the financial burden of volunteerism on CHVs, and educational and professional supports for CHVs.

Project description:BackgroundMucosal specimens are essential to evaluate compartmentalized immune responses to HIV vaccine candidates and other mucosally targeted investigational products. We studied the acceptability and feasibility of repeated mucosal sampling in East African clinical trial participants at low risk of HIV and other sexually transmitted infections.Methods and findingsThe Kenya AIDS Vaccine Initiative (KAVI) enrolled participants into three Phase 1 trials of preventive HIV candidate vaccines in 2011-2012 at two clinical research centers in Nairobi. After informed consent to a mucosal sub-study, participants were asked to undergo collection of mucosal secretions (saliva, oral fluids, semen, cervico-vaginal and rectal), but could opt out of any collection at any visit. Specimens were collected at baseline and two additional time points. A tolerability questionnaire was administered at the final sub-study visit. Of 105 trial participants, 27 of 34 women (79%) and 62 of 71 men (87%) enrolled in the mucosal sub-study. Nearly all sub-study participants gave saliva and oral fluids at all visits. Semen was collected from about half the participating men (47-48%) at all visits. Cervico-vaginal secretions were collected by Softcup from about two thirds of women (63%) at baseline, increasing to 78% at the following visits, with similar numbers for cervical secretion collection by Merocel sponge; about half of women (52%) gave cervico-vaginal samples at all visits. Rectal secretions were collected with Merocel sponge from about a quarter of both men and women (24%) at all 3 visits, with 16% of men and 19% of women giving rectal samples at all visits.ConclusionsRepeated mucosal sampling in clinical trial participants in Kenya is feasible, with a good proportion of participants consenting to most sampling methods with the exception of rectal samples. Experienced staff members of both sexes and trained counselors with standardized messaging may improve acceptance of rectal sampling.

Project description:Early childhood is a critical phase of development. In low resource settings, monitoring this stage of development and providing appropriate and timely feedback is a challenge. Community-based service providers play a key role in promoting early childhood development in areas where government services are weak. These community-based service providers are also tasked with the collection of monitoring and evaluation data for donors and local government. Usually, collection of these data aims to provide accountability, learning, and correction leading to improvement. However, such data is rarely used beyond the accountability stage.The purpose of this study was to test the feasibility and acceptability of the Information for Action (IFA) mobile phone app. The IFA app was designed for use by community health volunteers (CHVs), and repackages routinely collected data about children into useful, offline decision support for caregivers and program managers.The IFA app was tested with a convenience sample of 10 CHVs in West Katweng'a, a sublocation of Rarieda subcounty in western Kenya. CHVs used the IFA app for 5 months as part of their regular home visits to households containing children aged 0 to 5 years, after which a qualitative assessment of the app was conducted. A total of 16 caregivers who received services from the CHVs were randomly selected to participate in 1 of 2 focus group discussions about their experience.The app was reported to help facilitate interactive dialog between CHVs and caregivers, leading to improved quality of home visits. Caregivers described the app as shifting the relationship from feeling harassed by CHVs to experiencing genuine interest from CHVs. CHVs reported feasibility challenges primarily related to infrastructure. The limited battery life of mobile phones combined with the lack of readily available electricity made it difficult to keep the phones charged. CHVs reported initial anxiety as first-time mobile phones users, including concerns about using the IFA app. With time, increased levels of confidence were seen.Acceptability was high with both CHVs and caregivers, who reported an improvement in their client-provider relationship. A number of feasibility challenges were experienced.

Dataset Information

Conceptual frameworks for understanding the acceptability and feasibility of the minimally invasive autopsy to determine cause of death: Findings from the CADMIA Study in western Kenya.

Publications

Conceptual frameworks for understanding the acceptability and feasibility of the minimally invasive autopsy to determine cause of death: Findings from the CADMIA Study in western Kenya.

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