A home-based intervention using augmentative and alternative communication (AAC) techniques in rural Kenya: what are the caregivers’ experiences?

Background Caring for a child with complex communication needs associated with a developmental condition frequently adds stress to the caregiver. Furthermore, professional assistance is scarce in low-income rural settings. For such children speech is frequently unachievable. Augmentative and alternative communication provides options for supplementing or replacing speech with other techniques. The current study aimed to examine the experiences of caregivers in Kenya before and after a home-based intervention using augmentative and alternative communication techniques with children with complex communication needs. Methods Caregivers were interviewed pre- and post-intervention. The interviews were digitally recorded, transcribed and translated into English. Content analysis was applied through the stages of text familiarization and topic organization. Emergent themes and their sub-themes were identified and labelled. Connections between themes were established and interpretations made. The procedure was completed by a second researcher independently. Conflicting ideas were jointly discussed until consensus was achieved. Results Four themes emerged from the data: communication process; struggle; normality; and supernatural power. Before intervention, the caregivers acknowledged their expertise in communications with the child, while also revealing their sense of isolation, burden and pain. Normality was present as a source of comparison and also an aspirational goal. Post-intervention more positive language was used to describe the child. There was an ‘opening up’ of communication that recognized the child’s strengths and some social support systems were re-established. The power of the supernatural was recognized before and after intervention. Conclusion Caring of a child with complex communication needs presents many challenges. A home-based intervention using augmentative and alternative communication techniques appears to have been a catalyst for some positive transformations in the caregivers’ experiences, although it is not possible to attribute this change to any one aspect. The potentials of the home-based intervention would benefit from further investigation on a larger scale

A New Space for a New Generation: The Rise of Co-operatives Amongst Young People in Africa

One of the most pressing challenges for the co-operative movement today is how it can engage with and support the aspirations of young people. A new paper, A New Space For a New Generation: The Rise of Co-operatives Amongst Young People in Africa, by doctoral researcher Sally Hartley, highlights some of the innovative ways in which this engagement is being fostered in Africa today and how co-operatives provide not just opportunities for gaining an income but play a vital educational role. The paper is the result of a joint doctoral programme between the Co-operative College and the Open University, funded by the UK Economic and Social Research Council. The development and publication of the paper was also carried out under the Co-operatives for Development programme supported by the UK Department for International Development. Young people, who comprise 35 per cent of the population of Sub-Saharan Africa, face many challenges and exist at the margin of society economically, politically and socially. They are seen as a financial burden to governments due to the higher needs of providing them with education, and health. In her research, Sally sets out to answer the question of whether co-operatives in Africa can enable young people to form a successful business which in turn can generate income and act as an effective mechanism for collective action. She examines the various ways by which youth benefit from co-operatives including access to user friendly finance, increased income, personal development and different skills

Learning for development through co-operation: the engagement of youth with co-operatives in Lesotho and Uganda

With 2011 designated the United Nations Year of the Youth and 2012 the Year of the Co-operative this research contributes to issues raised by these two significant and timely events. The renaissance of co-operatives globally and their revival in countries in Africa has promoted interest and debate around co-operatives as collective values-based businesses and their potential to promote economic and social development and address poverty (UN, 2010). There is also increasing recognition that youth in Africa present both a potential and a challenge for development (UN, 2011). Youth access to education, civic participation and the ability to secure and sustain livelihoods are core concerns. Initiatives to involve youth in co-operatives in Lesotho and Uganda bring these two areas together and are of particular interest. The focus of this thesis is whether and how co-operatives provide opportunities for youth learning and the development of their capabilities and agency to achieve valued goals. The analysis is framed through conceptualisation of co-operatives as learning spaces within which theories of situated , learning are combined with the capability approach. Using qualitative and participatory methods to investigate youth engagement in co-operatives in Lesotho and Uganda the thesis argues that co- operatives provide situated social learning spaces where youth learn for development. Learning emerges within such spaces for: business and vocational knowledge and skills, personal development, collective learning based on trust and co-operator identity, and wider outcomes such as community engagement, enhanced relationships and networks and development of the co- operative form. Learning is, however, both enabled and restricted by: gender, the level of prior formal education, the networks of which a co-operative is a part and the type and success of a co-operative

Early childhood portfolios as a tool for enhancing learning during the transition to school

From 2005-2008 Mangere Bridge Kindergarten in New Zealand carried out a Centre of Innovation research project exploring the transition between early childhood education and school. A flexible action research approach was used, with the three teacher researchers, supported by two university research associates, developing and researching a range of strategies for supporting children’s learning as the children and their families ‘crossed the border’ from early childhood education to school. Many of these initiatives involved working closely with teachers in the local school setting. This paper focuses on one aspect of the findings, the ways in which the early childhood portfolios could be used to enhance children’s learning during the transition to school. Portfolios were identified as a belonging and empowerment tool; a means for school teachers to access to children’s funds of knowledge; playing a role in constructing a positive self-image about learning; and as valuable literacy artefacts

Children with cerebral palsy in bangladesh:Their contribution to the development of a rehabilitation training programme

Purpose: Although cerebral palsy is the most prevalent health condition linked to childhood disability in Bangladesh, support and rehabilitation for this group is limited and intervention development is slow. An initiative to address these unmet needs was the development of a parent/caregiver training programme for the rehabilitation of children with cerebral palsy. The aim of this study was to explore what was important in the everyday lives of children with cerebral palsy in rural Bangladesh and take their views into account to inform the training programme. Methods: Qualitative data was collected from 12 children with cerebral palsy, between 5 - 14 years of age. The children were purposively selected from among those who attended the training programme. A participatory method called the ‘Feeling Dice’ was used to elicit children’s feelings about their everyday lives. The approach was easy to use, acceptable in the local context, the children enjoyed the activity, and it generated rich information. Results: ‘Inclusion in play’ and ‘being able to attend school’ made the children happy and were their two main priorities, yet were not key issues for parents. The children were frustrated by their dependence on others for day-to-day activities such as feeding, bathing, and transport to school. Children also played an important part in encouraging their parents to attend the training course. Conclusion: This study showed that valuable information can be gathered from children with cerebral palsy by using a simple and adaptable participatory research tool. Children’s views and priorities sometimes differed from those of their parents and carers, and is useful for developing more relevant and valid interventions. Children need to be recognised as important ‘agents of change’ within their own rehabilitation. This methodology is in harmony with the UNCRPD recommendations, and supports inclusive and rights-based intervention development

Participatory Monitoring of Community-Based Rehabilitation and other Disability- Inclusive Development Programmes: the Development of a Manual and Menu

Purpose: This paper describes a three-year research project leading to the development of the CBR Monitoring Manual and Menu (MM&M). The MM&M is a practical toolkit that meets the needs of CBR managers and stakeholders, and is consistent with the philosophy of CBR and community-based disability-inclusive development. It is designed to produce meaningful and locally useful information and data, based on international data standards where possible, to enable aggregation at regional, national and international levels. Methods: Five complementary workstreams of research were carried out from 2011 to 2014: 1) literature review and analysis; 2) participatory action research with CBR stakeholders; 3) analysis and refinement of validity of concepts and structures; 4) consultation and review; and 5) synthesis of results. This article documents the method and key results of each of the five workstreams, and the lessons learned along the way. Results: The MM&M is now freely available on-line at http://sydney.edu.au/health-sciences/cdrp/projects/cbr-monitoring.shtml. Collaboration among members of the development team continues, chiefly via an on-line group to which new members have been welcomed. Conclusion and Implications: At the time of writing, the MM&M is the only international monitoring product, known to the authors, that consciously sets out to reflect both a ‘bottom- up’ and ‘top-down’ perspective of monitoring information and data. To achieve this for a complex programme such as CBR, and to align with its principles, it was essential to use a multi-component and multi-stage strategy for tool development, involving a diverse multidisciplinary team includingcollaboration with CBR stakeholders

Persons with disabilities as experts-by experience: Using personal narratives to affect community attitudes in Kilifi, Kenya

Background: The last decade has seen improved public awareness of disability in sub-Saharan Africa. However, negative and stereotypical views of disability still persist in many communities. We conducted a study to promote awareness of disability in rural Kenya, using a process of reflection and education. This paper reports on the second aspect – education. The research question was: How can personal narratives of living with disability affect community attitudes and responses to disability? Methods: A qualitative phenomenological approach was adopted. Twenty community-based groups involving 249 participants took part. Each group participated in one focus group discussion at baseline, to explore the members’ personal experiences and views of disability. The intervention involved three adults with disabilities sharing their personal narratives with each group. After the intervention, repeat focus group discussions were conducted with each group. Thematic analysis was carried out according to the framework method. Results: The emergent framework consisted of four main themes, organised as opposing constructs: ‘burden’ and ‘agency’, ‘sub-human’ and ‘human’. ‘Burden’ focused on the perceived hopelessness of the situation. Post-intervention revealed greater support for the ‘agency’ of persons with disabilities, evidenced by what the person could do, rather than their inability, and the relevance of support. The ‘sub-human’ to ‘human’ construct captured dehumanising and discriminating practice towards persons with disabilities on one side, and recognition of the person and inclusion in the community on the other. Whilst support and empathy were evident at the pre-intervention stage, post-intervention revealed greater recognition of people with disabilities as fellow human beings. Conclusion: This study provides a proof of concept regarding the deployment of persons with disabilities as agents for change. Exposure to experts-by-experience provided community groups with opportunities to reflect on, examine and adjust their views on disability in this rural part of Kenya. The sharing of personal narratives appeared to resonate with group members, to encourage recognition of the person and not just the disability, and to move their resolve toward ideas for collective action. Further research is needed to assess the effects of such interventions

An Online Survey on Identification of Evaluation Capacity, Needs and Current Practice of Programme Evaluation in Community-based Rehabilitation

Purpose: Evaluation of Community-based Rehabilitation (CBR) is important for developing good practice and providing a foundation for evidence of efficacy of practice. Since not much is known about the extent to which monitoring and evaluation (M&E) are carried out within CBR programmes, this study aimed to enhance knowledge by focussing on current M&E activities, the need and capacity of programmes to conduct evaluations and the challenges experienced. Method: An online survey of 15 questions was developed, field-tested and sent out to 236 CBR managers in Africa, Asia and Latin America. Results: The majority (86%) of the respondents indicated that their programmes had been evaluated in the past.While this was mainly done by international donors (87%), around half of the respondents reported programme participants as the main audience. Just over half of the programmes (54%) included people with disabilities, their families and community members in evaluation processes. Insufficient financial resources were considered the most important challenge to conducting evaluations, particularly in the African region and among smaller programmes. The complexity of CBR was also indicated as an important barrier to evaluation. Conclusions and Recommendations: Although evaluations have been widely implemented in CBR programmes, many of them are not locally owned, and people with disabilities and their families are often not included in the evaluation process. The issues of limited financial resources and CBR complexity reflect current discussions in other areas of mainstream development. It is therefore recommended that models for evaluation in CBR should learn from, and be embedded in, ongoing developments in mainstream evaluation in international development

COVID-19 in 2020: Defining Medical Student Roles During the Pandemic

Introduction: The COVID-19 pandemic has unequivocally disrupted medical education. Medical students have been removed from clinical rotations despite continued desire to participate in patient care during the pandemic. Many medical schools are adopting online learning while the COVID-19 pandemic continues, but the role of medical students in patient care and value of COVID-19-related education remains unclear. Methods: Rising third and fourth year medical students were placed in a 4-week long curriculum designed to prepare students for leadership during times of crisis, to educate students about COVID-19, to understand the societal and public health impacts of the pandemic, to develop tools to maintain personal wellness and resilience, and to engage students in activities related to service, education, research, and reflection. Students partook in didactic sessions, small group meetings, and weekly written reflections. The course heavily emphasized service opportunities, including service to patients, humanity (via communication and education, art and creativity, and scholarship), and self and peers. Following course completion, students answered a pre-post survey to gauge how effectively the course achieved the aforementioned educational objectives. Results: Of the 245 students who participated in the course, 41 students completed the pre-post survey. The course successfully increased student confidence in how students can personally contribute to patient care during COVID-19 (p =0.006). While no additional student attitudes significantly changed, students continued to highly rank a desire to contribute to patient care despite risks to themselves and their families. Discussion: The course gave students the tools to directly impact patient care during the pandemic and demonstrated that medical students have a strong commitment to their communities likely from an intrinsic sense of altruism and calling