Mary Wickenden

Ask us too! Doing participatory research with disabled children in the global south

This article considers how disabled children and young people living in the global south can be included actively in research that explores their lives. While acknowledging the complex, theoretical dilemmas in the overlapping arenas of childhood, disability and international development, the focus here is on methodology. Many researchers argue that children in diverse contexts can be active participants in research and this is increasingly occurring globally. However, this trend towards consulting children themselves is rarely extended to those with disabilities. Arguably, they are accidentally forgotten, assumed to have nothing to say or perceived to be methodologically difficult to include. Thus, disabled children and young people’s perspectives are overlooked, particularly in the global south. We describe two participatory research projects with disabled children and young people in India and Sri Lanka, and focus particularly on practical issues that arose including recruitment, information and consent processes and data collection methods. We argue that considering these issues and making the necessary adaptations to enable children with a variety of impairments to participate meaningfully contributes to enacting both the relevant United Nations conventions, the 1989 United Nations Convention on the Rights of the Child and the 2006 United Nations Convention on the Rights of Persons with Disabilities. Advocating their participation without making appropriate provisions is potentially tokenistic and unethical. It is necessary and possible to include them both in ‘mainstream’ child-focussed research, and specific disability-orientated projects. Involving disabled children in research has dual purposes: inclusion of their perspectives alongside those of other children and highlighting their disability-specific views where relevant. What they say may be surprising to some and challenge assumptions about them. Importantly, this will contribute to reducing their marginalisation from mainstream society.

Talking to Teenagers: Using Anthropological Methods to Explore Identity and the Lifeworlds of Young People Who Use AAC.

The article outlines the methodology used in an ethnographic study of identity with teenagers who use augmentative and alternative communication (AAC). It is unusual to investigate this population in naturalistic contexts using qualitative methods. Nine individuals are studied, in a range of contexts using ethnography as the main method. The research draws on theory from childhood and disability studies to gain a broad picture of the participants’ lives. The aim was to explore the teenagers’ views of their lives while also contextualizing these with perspectives of people around them and three adult AAC users. The method enabled the researcher to see the many ways in which disabled teenagers experience their worlds. The study shows that they are more interested in the ways that they are like others than anything else and that they identify themselves most importantly as teenagers rather than as disabled.

Widening the SLP lens: How can we improve the wellbeing of people with communication disabilities globally

Abstract This article responds to 33 by arguing that the wellbeing of people with communication disabilities in the global south will be improved if speech and language pathologists widen their lens considerably. The numbers of speech-language pathologists (SLPs) in the Majority World is and will remain infinitesimally small. Therefore, to make any meaningful impact the profession needs to engage in debates and activities outside the health and service provision arenas, getting involved cross-sectorally and at various policy levels. It is contended that, although the World Report on Disability is a useful summary of the status quo, actually SLPs need to harness two other seminal documents: The International Classification of Functioning, Disability and Health and, more particularly, the United Nations Convention on the Rights of People with Disabilities in order to drive change. Historically the professions focus has been on impairments, and current moves to social models are welcome. However, SLPs need to embrace human rights approaches and broader frameworks of inclusive community development, using global initiatives such as community-based rehabilitation to improve the lives of people with communication disabilities. Why SLPs should become critically engaged, particularly at the macro level, is explored.

Teaching Speech and Language Therapists in Sri Lanka: Issues in Curriculum, Culture and Language

This paper draws on the experiences of the authors in designing and teaching a new course to educate speech and language therapists in Sri Lanka. This was the first speech and language therapist course in the country and was the result of collaboration between two universities, one in the UK and one in Sri Lanka. Rather than replicating established programmes elsewhere it was more appropriate to design a new course, suited to providing a comprehensive model of service, encompassing both social and medical approaches to rehabilitation. Issues about developing teaching and learning approaches to match pre-existing knowledge and experience of both staff and students are addressed. The particular ways of designing the programme to take account of cultural and language aspects of the Sri Lankan context are discussed.

Preliminary planning for training speech and language therapists in Uganda.

Country-specific issues affect both the implementation of services for people with communication disabilities and the training of specialists who provide these services. Uganda is a majority world country with an extremely limited specialist service, but is looking to expand it by developing training for specialist workers. This paper reports on the initial processes adopted in Uganda to develop such training. A workshop that brought together all the stakeholders identified key issues. The paper relates these issues to the International Association of Logopedics and Phoniatrics guidelines for education and training and makes suggestions for the way forward.

What can we learn about postnatal care in Ghana if we ask the right questions? A qualitative study.

Background There are increasing efforts to monitor progress in maternal and neonatal care, with household surveys the main mode of data collection. Postnatal care (PNC) is considered a priority indicator yet few countries report on it, and the need to improve the construct validity associated with PNC questions is recognized. Objectives To determine womens knowledge of what happens to the baby after delivery, womens comprehension of terms and question phrasing related to PNC, and issues with recall periods. Design Forty qualitative interviews and four focus group discussions were conducted with mothers, and 10 interviews with health workers in rural Ghana. Data were collected on knowledge and recall of postnatal health checks and language used to describe these health checks. Results Mothers required specific probing using appropriate language to report postnatal checks. They only had adequate knowledge of postnatal checks, which were easily observed or required asking them a question. Respondents reported that health workers rarely communicated with mothers about what they were doing, and most women did not know the purpose of the equipment used during health checks, such as why a thermometer was being used. Knowledge of neonatal checks in the first hours after a facility delivery was low if the mother and child were separated, or if the mother was tired or weak. Many women reported that they could remember events clearly, but long recall periods affected reporting for some, especially those who had multiple checks or for those with no problems. Conclusions Direct questions about PNC or health checks are likely to underestimate coverage. Validity of inferences can be enhanced by using appropriate verbal probes during surveys on commonly performed checks that are clear and visible to the mother.

Understanding parents’ and professionals’ knowledge and awareness of autism in Nepal

Autism is a global phenomenon. Yet, there is a dearth of knowledge of how it is understood and its impact in low-income countries. We examined parents’ and professionals’ understanding of autism in one low-income country, Nepal. We conducted focus groups and semi-structured interviews with parents of autistic and non-autistic children and education and health professionals from urban and rural settings (n = 106), asking questions about typical and atypical development and presenting vignettes of children to prompt discussion. Overall, parents of typically developing children and professionals had little explicit awareness of autism. They did, however, use some distinctive terms to describe children with autism from children with other developmental conditions. Furthermore, most participants felt that environmental factors, including in-utero stressors and birth complications, parenting style and home or school environment were key causes of atypical child development and further called for greater efforts to raise awareness and build community capacity to address autism. This is the first study to show the striking lack of awareness of autism by parents and professionals alike. These results have important implications for future work in Nepal aiming both to estimate the prevalence of autism and to enhance support available for autistic children and their families.

Stakeholder consultations on community-based rehabilitation guidelines in Ghana and Uganda

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 Ghana Objectives 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.

Don’t Forget Us, We Are Here Too! Listening to Disabled Children and Their Families Living in Poverty

Discourses in the disability movement and disability research are predominantly focussed on adults. This volume, ironically, is further evidence of this bias. In this chapter we set out to illustrate why the lives of disabled children and young people and their families, especially those living in low-income settings globally, warrant more attention. We argue that their perspectives can and should be more actively sought. We draw on theory from childhood studies and disability studies, both of which maintain a bias towards consideration of those in the global North. We also draw on participatory research and project work, first with disabled children themselves in South Asia and Uganda, and second with parents in South Africa, to show that there is much to be learned by listening to both groups, encouraging their direct participation in research as well as in programme planning, implementation and evaluation.

G278(P) What is the estimated prevalence of autism in a rural population of Nepali children

Background Autism is a global phenomenon. Epidemiological studies estimate that 1–2% of children worldwide lie on the autism spectrum,1 with approximately 52 million individuals with autism across the globe. These estimates are largely driven, however, by prevalence estimates from high-income countries (HIC). Virtually no data exist, however, on the prevalence of autism in low-income countries (LIC) and none in a LIC rural setting. Aims Develop a Nepali language version of a screening tool for autism Estimate prevalence of autism in a rural population of 10–13 year-old Nepali children Methods The Autism Quotient-10 (AQ-10) is a well-validated brief questionnaire of the 10 statements most strongly predictive of a diagnosis of autism in a UK population of children (sensitivity: 95%; specificity: 97%).2 We translated the AQ-10 – adolescent version in discussion with UK and Nepali paediatricians and clinical psychologists. The translated version was further developed and tested for acceptability in 3 focus groups of parents (n = 25). It was then piloted as a questionnaire with 136 families, following which minor edits were made only and additional fieldworker training provided. We conducted face-to-face interviews with 3984 parents from a cohort of 10–13 year-old children recruited from a 10-year follow-up study of a trial of women’s participatory groups.3 These families live in Makwanpur, a rural district of Nepal. Results Eleven out of 3984 children scored greater than 6 out of 10, indicative of autistic symptomatology. If the AQ-10 screening tool is as sensitive and specific in the Nepali population as it is in the UK, this would give an estimated true prevalence of 3 in 1000 (95% confidence interval 2 to 5 in 1000).4 Conclusion This is the first study to estimate prevalence of autism in a rural LIC setting. Prevalence estimates were lower than those in HIC. Future research is required to validate this tool through in-depth comprehensive assessments of high-scoring children. This preliminary estimate, combined with complementary research showing the lack of awareness of autism by Nepali professionals and parents, stresses the need to develop services to support families and children with atypical development in rural LIC settings.