scholarly journals “We Can’t Handle Things We don’t Know About”: Perceived Neurorehabilitation Needs and Challenges for Malawian Paediatric Cerebral Malaria Survivors

2020 ◽  
Author(s):  
Alexandra Boubour ◽  
Sebastian Mboma ◽  
Tracy Võ ◽  
Gretchen L. Birbeck ◽  
Karl B. Seydel ◽  
...  

Abstract Background: We sought to identify perceptions of neurorehabilitation needs and challenges for paediatric cerebral malaria (CM) survivors post-hospital discharge at Queen Elizabeth Central Hospital (QECH) in Blantyre, Malawi. Methods: An exploratory approach was used to qualitatively investigate current available neurorehabilitation services; investigate the needs of caregivers, CM survivors, providers, and the community; and identify challenges and methods to accessing neurorehabilitation services. Data were collected through semi-structured in-depth interviews (IDIs) and focus group discussions (FGDs).Results: Eighteen data-gathering sessions were conducted with 38 total participants, including 3 FGDs with 23 primary caregivers, 11 IDIs with healthcare workers at QECH, and 4 IDIs with community-based rehabilitation workers (CRWs). FGDs revealed that caregivers lack important knowledge about CM and fear recurrence of CM in their children. Post-CM children and families experience substantial stigma and sociocultural barriers to integrating into their community and accessing neurorehabilitative care. At a community-level, rehabilitation infrastructure, including trained staff, equipment, and programmes, is extremely limited. Rehabilitation services are inequitably accessible, and community-based rehabilitation remains largely unavailable.Conclusions: There is an urgent need to establish further training of rehabilitation personnel at all levels and to build accessible rehabilitation infrastructure in Malawi for post-CM patients. Additional work is required to expand this study across multiple regions for a holistic understanding of neurorehabilitation needs.

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Alexandra Boubour ◽  
Sebastian Mboma ◽  
Tracy Võ ◽  
Gretchen L. Birbeck ◽  
Karl B. Seydel ◽  
...  

Abstract Background We sought to identify perceptions of neurorehabilitation challenges for paediatric cerebral malaria (CM) survivors post-hospital discharge at Queen Elizabeth Central Hospital (QECH) in Blantyre, Malawi. Methods An exploratory approach was used to qualitatively investigate the perceived neurorehabilitation challenges for paediatric CM survivors. Data were collected through semi-structured in-depth interviews (IDIs) and focus group discussions (FGDs). Eighteen data-gathering sessions were conducted with 38 total participants, including 3 FGDs with 23 primary caregivers, 11 IDIs with healthcare workers at QECH, and 4 IDIs with community-based rehabilitation workers (CRWs). Results FGDs revealed that caregivers lack important knowledge about CM and fear recurrence of CM in their children. Post-CM children and families experience substantial stigma and sociocultural barriers to integrating into their community and accessing neurorehabilitative care. At a community-level, rehabilitation infrastructure, including trained staff, equipment, and programmes, is extremely limited. Rehabilitation services are inequitably accessible, and community-based rehabilitation remains largely unavailable. Conclusions There is an urgent need to establish further training of rehabilitation personnel at all levels and to build accessible rehabilitation infrastructure in Malawi for post-CM patients. Additional work is required to expand this study across multiple regions for a holistic understanding of neurorehabilitation needs.


2020 ◽  
Author(s):  
Alexandra Boubour ◽  
Sebastian Mboma ◽  
Tracy Võ ◽  
Gretchen L. Birbeck ◽  
Karl B. Seydel ◽  
...  

Abstract Background: We sought to identify perceptions of neurorehabilitation challenges for paediatric cerebral malaria (CM) survivors post-hospital discharge at Queen Elizabeth Central Hospital (QECH) in Blantyre, Malawi.Methods: An exploratory approach was used to qualitatively investigate the perceived neurorehabilitation challenges for paediatric CM survivors. Data were collected through semi-structured in-depth interviews (IDIs) and focus group discussions (FGDs). Eighteen data-gathering sessions were conducted with 38 total participants, including 3 FGDs with 23 primary caregivers, 11 IDIs with healthcare workers at QECH, and 4 IDIs with community-based rehabilitation workers (CRWs).Results: FGDs revealed that caregivers lack important knowledge about CM and fear recurrence of CM in their children. Post-CM children and families experience substantial stigma and sociocultural barriers to integrating into their community and accessing neurorehabilitative care. At a community-level, rehabilitation infrastructure, including trained staff, equipment, and programmes, is extremely limited. Rehabilitation services are inequitably accessible, and community-based rehabilitation remains largely unavailable.Conclusions: There is an urgent need to establish further training of rehabilitation personnel at all levels and to build accessible rehabilitation infrastructure in Malawi for post-CM patients. Additional work is required to expand this study across multiple regions for a holistic understanding of neurorehabilitation needs.


2001 ◽  
Vol 57 (4) ◽  
pp. 4-8
Author(s):  
P. Struthers

This paper describes a situation analysis of the rehabilitation personnel, employed by the state and non-governmental organisations, and the services available for people with disabilities in one health district in Cape Town. The recurrent cost of employing the rehabilitation personnel is analysed to determine how funding is allocated within the district. The results indicate that most expenditure on personnel is at two state institutions in the district, with 76% of the expenditure at the regional psychiatric hospital and its residential facility for people with a profound intellectual disability. The balance - 24% of expenditure - is the cost of employing rehabilitation personnel who provide a district level service. Seventy percent of this district level expenditure is at one special school that accepts 6% of children with disabilities in the district. A high percentage of intellectually disabled children and adults, with or without physical disabilities, do not have access to rehabilitation. There is minimal expenditure on employing rehabilitation personnel at the community heath centre. The only expenditure on community based rehabilitation is provided by the non-governmental organisation. The study demonstrates the inequitable distribution of funding for rehabilitation services within one relatively well-resourced health district and makes recommendations to facilitate change.


PLoS ONE ◽  
2021 ◽  
Vol 16 (2) ◽  
pp. e0246158
Author(s):  
Laura Asher ◽  
Rahel Birhane ◽  
Solomon Teferra ◽  
Barkot Milkias ◽  
Benyam Worku ◽  
...  

Background There are gaps in our understanding of how non-specialists, such as lay health workers, can achieve core competencies to deliver psychosocial interventions in low- and middle-income countries. Methods We conducted a 12-month mixed-methods study alongside the Rehabilitation Intervention for people with Schizophrenia in Ethiopia (RISE) pilot study. We rated a total of 30 role-plays and 55 clinical encounters of ten community-based rehabilitation (CBR) lay workers using an Ethiopian adaptation of the ENhancing Assessment of Common Therapeutic factors (ENACT) structured observational rating scale. To explore factors influencing competence, six focus group discussions and four in-depth interviews were conducted with 11 CBR workers and two supervisors at three time-points. We conducted a thematic analysis and triangulated the qualitative and quantitative data. Results There were improvements in CBR worker competence throughout the training and 12-month pilot study. Therapeutic alliance competencies (e.g., empathy) saw the earliest improvements. Competencies in personal factors (e.g., substance use) and external factors (e.g., assessing social networks) were initially rated lower, but scores improved during the pilot. Problem-solving and giving advice competencies saw the least improvements overall. Multimodal training, including role-plays, field work and group discussions, contributed to early development of competence. Initial stigma towards CBR participants was reduced through contact. Over time CBR workers occupied dual roles of expert and close friend for the people with schizophrenia in the programme. Competence was sustained through peer supervision, which also supported wellbeing. More intensive specialist supervision was needed. Conclusion It is possible to equip lay health workers with the core competencies to deliver a psychosocial intervention for people with schizophrenia in a low-income setting. A prolonged period of work experience is needed to develop advanced skills such as problem-solving. A structured intervention with clear protocols, combined with peer supervision to support wellbeing, is recommended for good quality intervention delivery. Repeated ENACT assessments can feasibly and successfully be used to identify areas needing improvement and to guide on-going training and supervision.


2017 ◽  
Vol 59 (2) ◽  
pp. 48
Author(s):  
Magugu Ngubane ◽  
Verusia Chetty

This study sought to determine the levels of satisfaction and experiences of caregivers with a multidisciplinary rehabilitation programme. A total of 26 caregivers were recruited at 3 health settings in South Africa. A survey based on the Multidimensional Assessment of Parental Satisfaction for Children with Special Needs and focus-group discussions were conducted at the end of programme. The majority of the respondents were mothers and unemployed. The participants were generally satisfied with the rehabilitation. However, participants held on to myths, stereotypes, and beliefs about the cause of disability and explained the impact of stigma on having a disabled child in their communities. Caregivers perceived the benefit of rehabilitation but believed that lack of communication and consultation with health professionals limited the care. (Full text of the research articles are available online at www.medpharm.tandfonline.com/ojfp) S Afr Fam Pract 2017; DOI: 10.1080/20786190.2016.1254929


2015 ◽  
Vol 11 (3) ◽  
Author(s):  
Ronel Smith

English abstractFocus group research is increasingly being used as a tool when working with traditionally marginalised communities. This paper describes a case study of how focus groups were used as a data-gathering tool by a research team working with middle-aged women in a remote rural community to design an ICT platform which meets their specific needs. The paper makes a methodological contribution by making a normative comparison between traditional focus groups and a community-based focus group in a rural community in South Africa. Feminist and critical views are discussed as sensitising dimensions and techniques for a community-based focus group approach. A description is given of the informed consent process and how the focus group discussions were piloted and are being used as a data-gathering tool. To date six focus groups have been conducted with a number of participants ranging from fifteen to twenty-three women per focus group. Extracts from the focus group discussions are given to show how appropriate this approach is in a rural community where the culture is inherently oral and decisions are reached by consensus. Group interaction, the need for openness and transparency, and the assurance that everybody gets the same information and is given the opportunity to voice their opinions, are very important in rural communities.French abtract -RÉSUMÉ  Cet article décrit une étude de la façon dont les groupes de discussion ont été utilisés comme un outil de collecte de données, par une équipe de recherche qui travaille avec les femmes d'âge moyen, dans une communauté rurale éloignée de la conception d'un forum pour la technologie de communication et de l’information (TCI) qui répondent à leurs besoins spécifiques . L’article apporte une contribution méthodologique en faisant une comparaison normative entre les groupes de discussion traditionnels et un groupe de discussion communautaire dans une communauté rurale en Afrique du Sud. Des vues féministes et critiques sont discutées comme dimensions de sensibilisation et techniques pour une approche de groupe de discussion communautaire. Une description est donnée du processus de consentement annoncée et la façon dont les groupes de discussion ont été mis à l'essai et sont utilisés comme un outil de collecte de données. À ce jour, six groupes de discussion composés d'une moyenne de vingt-trois femmes chacun ont été etudiés . Des extraits des discussions de groupe sont presentés pour montrer comment cette approche est appropriée dans une communauté rurale où la culture est intrinsèquement orale et les décisions prises par consensus. L'interaction en groupe, le besoin d'ouverture et de transparence, et l'assurance que tout le monde reçoit la même information et a la possibilité d'exprimer leurs opinions, sont très importants dans les communautés rurales.Russian abstract - РЕЗЮМЕ Эта статья описывает конкретный пример того, как фокус группы были использованы в качестве инструмента сбора данных группой исследователей, работающих с женщинами среднего возраста в отдаленной сельской общине для проектирования артефакта ИКТ, которая отвечает их конкретным потребностям. Методологический вклад статьи в нормативном сравнении между традиционными фокус-группами и общинными фокус-группами в сельской общинe в Южной Африке. Феминистские и критические взгляды обсуждаются в качестве сенсибилизирующих размерностей и методов подходящих для общинных фокус-групп . Дано описание процесса обоснованного согласия и как дискуссии в фокус-группах были опробованы и используются в качестве инструмента для сбора данных. На сегодняшний день шесть фокус-групп были опробированы, состоящих в среднем из двадцати трех женщин каждая. Выдержки из обсуждений в фокус-группах показывают, как хорошо подходит этот метод в сельской общине, где культура по своей сути устная и решения на основе консенсуса. Взаимодействие в группах, потребность в открытости и ясности, а также уверенность в том что каждый получает ту же информацию и имеет возможность высказать свое мнение, очень важны в сельских общинах.


2012 ◽  
Vol 1 (1) ◽  
Author(s):  
Mary Wickenden ◽  
Diane Mulligan ◽  
Gertrude O. Fefoame ◽  
Phoebe Katende

Background: The focus of this paper is the new broadened conceptualisation of community-based rehabilitation (CBR), which promotes the empowerment and inclusion of people with disabilities (PWDs) in diverse ways within their communities. New guidelines for CBR were launched in October 2010 by WHO/ILO/UNESCO/IDDC, and this paper describes part of the process by which these were produced using participatory approaches involving International Non-Government Organisations (INGOs) and local partners. The paper reviews the evolution of CBR and describes how grassroots consultation by INGOs working with key stakeholders in the disability arena can influence policy on disability issues, and reciprocally how policy change can inform organisations’ practice and research activities. This ongoing bidirectional influence is illustrated with data from the participatory consultation process about the new CBR guidelines carried out by Sightsavers in Uganda and GhanaObjectives: To consult with key stakeholders in the disability arena in Uganda and Ghana, in order to gain their opinions and suggestions for improvements to the then draft CBR guidelines, as part of a wider global participatory process of consultation on the document.Methods: The INGO Sightsavers gathered qualitative data through focus group discussions and questionnaires in both countries.Results: The participants’ critiques of the draft guidelines carried out in multiagency participatory processes were analysed thematically and fed back to the CBR guidelines editorial team.Conclusion: The paper concludes that stakeholders in diverse communities can actively contribute to shaping policy and practice through participatory consultations. Local and national government and non-government organisations and other key informants can inform the development of national and international guidelines and policies. This participatory approach can be successfully facilitated by INGOs. In turn, these processes have prompted organisations to adapt their own policies and programmes in order to be more responsive to the local needs and concerns of PWDs.


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