Stitching a new garment: Considering the future of the speech-language therapy profession globally.

Providing equitable support for people experiencing communication disability (CD) globally is a historical and contemporary challenge for the speech-language therapy profession. A group of speech-language therapists (SLTs) with ongoing and sustained experiences in Majority and Minority World contexts participated in five virtual meetings in 2021. The aim of these meetings was to develop provocative statements that might spur a global discussion among individuals and organisations that support people experiencing CD. The following questions were discussed: What is our vision for the future of the profession globally? What are the global challenges around access to speech-language therapy services?Four main themes emerged: (1) the need to centre people experiencing CD as the focal point of services, (2) participation, (3) equity and (4) community. The themes relate to the need for a process of de-imperialism in the profession. Suggestions were made to develop more suitable terminology and to establish a global framework that promotes more equitable access to communication services. We seek the adoption of approaches that focus on reciprocal global engagement for capacity strengthening. Alternative models of culturally sustaining and equitable service delivery are needed to create impact for people experiencing CD, and their families worldwide.Contribution: Provocative statements were developed to prompt global conversations among speech-language therapy professionals and associations. We encourage readers to consider the questions posed, share their viewpoints and initiate positive change towards a global strategy.

Empowering self-help groups for caregivers of children with disabilities in Kilifi, Kenya: Impacts and their underlying mechanisms.

Bringing up a child with disabilities in a low-income setting is challenged by inadequate resources, limited psycho-social support and poverty. Not surprisingly, many caregivers experience fatigue, distress and isolation. To address and investigate these issues, action was taken to set up twenty self-help groups focusing on caregiver empowerment. A realist evaluation design was adopted to evaluate impacts associated with the self-help process and to identify mechanisms determining the outcomes. Monthly monitoring visits were conducted to the groups during a ten-month set-up period, at the end of which eleven active groups remained, nine having dissolved due to disputes, corruption and extreme environmental conditions. A facilitated intervention was delivered to the active groups (N = 154) over a six-month period. The members were guided to review and discuss topics such as economic empowerment, personal situation, peer support, community inclusion, access to health and education. Evaluation employed mixed methods using questionnaires (n = 75) and semi-structured interviews (n = 36) pre- and post-intervention. At baseline, the burden of caregiving was characterised by aloneness, challenges, stigma and discrimination. Post-intervention, caregiver agency was defined by togetherness, capacity-building, acceptance and well-being. Significant impacts associated with caregiver perceptions included increased social support, reduced severity of child's disability and decreased effects of extrinsic factors affecting the caregiver's role. Mechanisms of 'handling goods and money' and 'social ties and support' appeared to underpin the outcomes. Caregiver empowerment was associated with newly developed skills, social connectedness and resource mobilisation. Documentation of group processes contributes to the evidence on community-based inclusive development.

Development of self-help groups for caregivers of children with disabilities in Kilifi, Kenya: process evaluation

Background: Caring for a child with disabilities in a resource-poor setting brings many challenges to the caregiver. We examined the development of self-help groups for caregivers in a rural part of Kenya. Objectives: To conduct a process evaluation on the development of self-help groups during a 10-month set-up period, focusing on implementation and mechanisms associated with their functional status. Methods: Using a realist evaluation design, we set up 20 self-help groups for 254 caregivers. An evaluation was conducted to investigate implementation and mechanisms of impact. Implementation focused on caregiver registration, community group support and monitoring visit compliance. Data were collected from group registers, records of meetings and field notes. Mechanisms of impact employed a framework of strengths­weaknesses­opportunities­threats to review the groups at the end of the 10-month set-up period. Results: Recruitment resulted in registration of 254 participants to 18 groups ­ two groups disbanded early. Post-evaluation included 11 active and 7 inactive groups. Compliance with the monitoring visits was consistent across the active groups. All groups engaged in 'merry-go-round' activities. The active groups were characterised by strong leadership and at least one successful income generation project; the inactive had inconsistent leadership and had dishonest behaviour both within the group and/or externally in the community. Mediators associated with functional status included the following: available literacy and numeracy skills, regular meetings with consistent attendance by the members, viable income generating projects, geographical proximity of membership and strong leadership for managing threats. Conclusion: Self-help groups have the potential to progress in resource-poor settings. However, critical to group progression are literacy and numeracy skills amongst the members, their geographical proximity, regular meetings of the group, viable income generating projects and strong leadership

Development of self-help groups for caregivers of children with disabilities in Kilifi, Kenya: Process evaluation.

Background: Caring for a child with disabilities in a resource-poor setting brings many challenges to the caregiver. We examined the development of self-help groups for caregivers in a rural part of Kenya. Objectives: To conduct a process evaluation on the development of self-help groups during a 10-month set-up period, focusing on implementation and mechanisms associated with their functional status. Methods: Using a realist evaluation design, we set up 20 self-help groups for 254 caregivers. An evaluation was conducted to investigate implementation and mechanisms of impact. Implementation focused on caregiver registration, community group support and monitoring visit compliance. Data were collected from group registers, records of meetings and field notes. Mechanisms of impact employed a framework of strengths-weaknesses-opportunities-threats to review the groups at the end of the 10-month set-up period. Results: Recruitment resulted in registration of 254 participants to 18 groups - two groups disbanded early. Post-evaluation included 11 active and 7 inactive groups. Compliance with the monitoring visits was consistent across the active groups. All groups engaged in 'merry-go-round' activities. The active groups were characterised by strong leadership and at least one successful income generation project; the inactive had inconsistent leadership and had dishonest behaviour both within the group and/or externally in the community. Mediators associated with functional status included the following: available literacy and numeracy skills, regular meetings with consistent attendance by the members, viable income generating projects, geographical proximity of membership and strong leadership for managing threats. Conclusion: Self-help groups have the potential to progress in resource-poor settings. However, critical to group progression are literacy and numeracy skills amongst the members, their geographical proximity, regular meetings of the group, viable income generating projects and strong leadership.

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.

The perception of disability by community groups: Stories of local understanding, beliefs and challenges in a rural part of Kenya.

Cultural narratives on disability have received much attention over the past few decades. In contexts of poverty, limited information and everyday challenges associated with having, or caring for someone with a disability, different understandings have emerged. A project was set up to promote disability awareness in neighborhood communities in a rural part of Kenya, using a process of reflection and education. This paper reports on the first aspect-reflection. The aim was to investigate local understanding of disability as a co-constructed concept. The research questions were: 1. What cultural beliefs shape local understanding of disability? 2. What challenges are perceived to be associated with disability? A phenomenological approach was adopted. Focus group discussions were conducted with twenty-one community groups involving 263 participants and audio-recorded. The data were transcribed and thematic analysis was carried out. Visual maps were created to illustrate any interconnections, before establishing the final conclusions. Local beliefs attributed disability to: human transgression of social conventions, particularly concerning inappropriate family relations, which invoked a curse; supernatural forces affecting the child; the will of God; unexplained events; and biomedical factors. Challenges associated with disability related to the burden of caregiving and perceived barriers to inclusion, with stress as a shared bi-product. Local understanding of disability in this rural part of Kenya demonstrated overlapping explanations and plurality of beliefs. Two possible interpretations are offered. Firstly, oscillation between explanatory lines demonstrated instability, affecting broader acceptance of disability. Secondly, and more positively, in the face of challenges, the desire to make sense of the existing situation, reflected a healthy pluralism.

Understanding the Impact of Brain Disorders: Towards a 'Horizontal Epidemiology' of Psychosocial Difficulties and Their Determinants.

OBJECTIVE: To test the hypothesis of 'horizontal epidemiology', i.e. that psychosocial difficulties (PSDs), such as sleep disturbances, emotional instability and difficulties in personal interactions, and their environmental determinants are experienced in common across neurological and psychiatric disorders, together called brain disorders. STUDY DESIGN: A multi-method study involving systematic literature reviews, content analysis of patient-reported outcomes and outcome instruments, clinical input and a qualitative study was carried out to generate a pool of PSD and environmental determinants relevant for nine different brain disorders, namely epilepsy, migraine, multiple sclerosis, Parkinson's disease, stroke, dementia, depression, schizophrenia and substance dependency. Information from these sources was harmonized and compiled, and after feedback from external experts, a data collection protocol including PSD and determinants common across these nine disorders was developed. This protocol was implemented as an interview in a cross-sectional study including a convenience sample of persons with one of the nine brain disorders. PSDs endorsed by at least 25% of patients with a brain disorder were considered associated with the disorder. PSD were considered common across disorders if associated to 5 out of the 9 brain disorders and if among the 5 both neurological and psychiatric conditions were represented. SETTING: The data collection protocol with 64 PSDs and 20 determinants was used to collect data from a convenience sample of 722 persons in four specialized health care facilities in Europe. RESULTS: 57 of the PSDs and 16 of the determinants included in the protocol were found to be experienced across brain disorders. CONCLUSION: This is the first evidence that supports the hypothesis of horizontal epidemiology in brain disorders. This result challenges the brain disorder-specific or vertical approach in which clinical and epidemiological research about psychosocial difficulties experienced in daily life is commonly carried in neurology and psychiatry and the way in which the corresponding health care delivery is practiced in many countries of the world.

Caregiver perceptions of children who have complex communication needs following a home-based intervention using augmentative and alternative communication in rural Kenya: an intervention note.

A high level of unmet communication need exists amongst children with developmental disabilities in sub-Saharan Africa. This study investigated preliminary evidence of the impact associated with a home-based, caregiver-implemented intervention employing AAC methods, with nine children in rural Kenya who have complex communication needs. The intervention used mainly locally-sourced low-tech materials, and was designed to make use of the child's strengths and the caregiver's natural expertise. A pretest-posttest design was used in the study. Data were gathered using an adapted version of the Communication Profile, which was based on the International Classification of Functioning, Disability, and Health (ICF) framework. The non-parametric Wilcoxon signed-rank test was applied to data from the first two sections of the Communication Profile-Adapted. Qualitative analysis was conducted on the final section. The data provided evidence of statistically significant positive changes in caregiver perceptions of communication at the levels of Body Structure and Function, and Activities for Communication. Also, analysis of the Participation for Communication section revealed some expansion to the children's social activities. The potential impact of the home-based intervention would benefit from investigation on a larger scale. Limitations of the study are discussed.

Narratives reflecting the lived experiences of people with brain disorders: common psychosocial difficulties and determinants.

BACKGROUND: People with brain disorders - defined as both, mental disorders and neurological disorders experience a wide range of psychosocial difficulties (PSDs) (e.g., concentrating, maintaining energy levels, and maintaining relationships). Research evidence is required to show that these PSDs are common across brain disorders. OBJECTIVES: To explore and gain deeper understanding of the experiences of people with seven brain disorders (alcohol dependency, depression, epilepsy, multiple sclerosis, Parkinson's disease, schizophrenia, stroke). It examines the common PSDs and their influencing factors. METHODS: Seventy seven qualitative studies identified in a systematic literature review and qualitative data derived from six focus groups are used to generate first-person narratives representing seven brain disorders. A theory-driven thematic analysis of these narratives identifies the PSDs and their influencing factors for comparison between the seven disorders. RESULTS: First-person narratives illustrate realities for people with brain disorders facilitating a deeper understanding of their every-day life experiences. Thematic analysis serves to highlight the commonalities, both of PSDs, such as loneliness, anger, uncertainty about the future and problems with work activities, and their determinants, such as work opportunities, trusting relationships and access to self-help groups. CONCLUSIONS: The strength of the methodology and the narratives is that they provide the opportunity for the reader to empathise with people with brain disorders and facilitate deeper levels of understanding of the complexity of the relationship of PSDs, determinants and facilitators. The latter reflect positive aspects of the lives of people with brain disorders. The result that many PSDs and their influencing factors are common to people with different brain disorders opens up the door to the possibility of using cross-cutting interventions involving different sectors. This strengthens the message that 'a great deal can be done' to improve the lived experience of persons with brain disorders when medical interventions are exhausted.

The relevance of the International Classification of Functioning, Disability and Health (ICF) in monitoring and evaluating Community-based Rehabilitation (CBR).

PURPOSE: To examine the relevance of the International Classification of Functioning, Disability and Health (ICF) to CBR monitoring and evaluation by investigating the relationship between the ICF and information in published CBR monitoring and evaluation reports. METHOD: A three-stage literature search and analysis method was employed. Studies were identified via online database searches for peer-reviewed journal articles, and hand-searching of CBR network resources, NGO websites and specific journals. From each study "information items" were extracted; extraction consistency among authors was established. Finally, the resulting information items were coded to ICF domains and categories, with consensus on coding being achieved. RESULTS: Thirty-six articles relating to monitoring and evaluating CBR were selected for analysis. Approximately one third of the 2495 information items identified in these articles (788 or 32%) related to concepts of functioning, disability and environment, and could be coded to the ICF. These information items were spread across the entire ICF classification with a concentration on Activities and Participation (49% of the 788 information items) and Environmental Factors (42%). CONCLUSIONS: The ICF is a relevant and potentially useful framework and classification, providing building blocks for the systematic recording of information pertaining to functioning and disability, for CBR monitoring and evaluation. Implications for Rehabilitation The application of the ICF, as one of the building blocks for CBR monitoring and evaluation, is a constructive step towards an evidence-base on the efficacy and outcomes of CBR programs. The ICF can be used to provide the infrastructure for functioning and disability information to inform service practitioners and enable national and international comparisons.

Survey of rehabilitation support for children 0-15 years in a rural part of Kenya.

PURPOSE: Information regarding the nature, availability and distribution of rehabilitation services for children with disabilities across developing countries is scarce, and data that do exist are of variable quality. If planning and development are to progress, information about service provision is vital. The aim was to establish the scope and nature of rehabilitation support available to children with disabilities (0-15 years) and their families in rural Kenya. METHOD: A comprehensive sample comprising service provision in the health and special education sectors was established. Non-governmental and community-based organisations were also included. A survey of rehabilitation services was conducted through examination of service-related documentation and key informant interviews with the heads of services. RESULTS: Rehabilitation comprised hospital-based occupational therapy, physiotherapy and orthopaedic technology; and seven special education establishments plus an education assessment resource centre. There was one non-government organisation and one community-based organisation relevant to children with disabilities. Activities focused on assessment, diagnosis and raising community awareness. Provision was challenged by inadequate staffing, resources and transport. Government funding was supplemented variously by donations and self-sufficiency initiatives. Rehabilitation approaches appeared to be informed by professional background of practitioner, rather than the needs of child. Service documentation revealed use of inconsistent recording methods. CONCLUSIONS: The data highlight the challenges of rehabilitation, demanding greater investment in personnel and their training, more material resources, improved access to the community and better recording mechanisms. IMPLICATIONS FOR REHABILITATION: There needs to be greater investment in rehabilitation provision in developing countries. Consideration of community-based initiatives is required to support better access for all. In order to argue the case for improved resources, better skills and mechanisms for recording, monitoring and evaluating practice are needed.

Investigation of practices to support the complex communication needs of children with hearing impairment and cerebral palsy in a rural district of Kenya: a case series.

BACKGROUND: Rehabilitation services are scarce in low-income countries, where under-representation of some specialist professions has led to the role extension of others. An example of this can be found in Kilifi in Kenya where the role of speech and language therapy has been taken on by occupational therapists and teachers. AIMS: To investigate the communication practices used by these professional groups to support children with complex communication needs in a rural part of Kenya and to explore the ways in which this might be seen to facilitate or obstruct improved communication by asking the following questions: What are the critical features of interactional discourse in practitioner-child dyads with caregiver-child dyads providing a natural comparison? What communicative modalities and practice techniques are invoked? And how does this information relate to extending professional roles? METHODS & PROCEDURES: An in-depth, descriptive study of a case series was conducted in a school for deaf children and the occupational therapy department of a district general hospital. A mixed methodology was used involving naturalistic observation and applied linguistics analysis. A convenience sample was established comprising six practitioner-child dyads assigned to partnership types: (A) three children with hearing impairment and their teachers; and (B) three children with cerebral palsy and their occupational therapists. As a natural comparator, the same three children in B were also observed with their mothers (partnership type C). Dyadic interaction was video recorded on three occasions. The video data were sampled, transcribed into standard orthography and translated. Codes were applied to determine turn structure, linguistic move types and communicative modalities. Sequential analysis was conducted on the move types. OUTCOMES & RESULTS: Partnership type A dyads showed a fairly even turn distribution between teacher and child. A common pattern was teacher-initiated Instruct and Model/Prompt, followed by child response in the form of an Action. The most frequently used modality was Sound Production and Hands-on-Articulators, which corresponded to articulation drill practice. Partnership type B dyads revealed a tendency towards adult domination of turns. The majority of adult-initiated moves required no response from the child. The practice technique Hands-on-Articulators involved manipulating the oral musculature of the child. Partnership type C dyads showed resonances of type B dyads, although focused more on Motor-Action in relation to task performance. CONCLUSIONS & IMPLICATIONS: The assignment of speech and language therapy duties to teachers and occupational therapists has resulted in suboptimal practice for children with complex communication needs.

Users' experiences of physiotherapy treatment in a semi-urban public hospital in Kenya.

INTRODUCTION: Physiotherapy practice in Africa faces a number of challenges, one of which is the limited number of therapists in most public hospitals. In Africa, physiotherapy is still mainly institution based with very little community-based practice, leading to lack of access to services for a large part of the population. This study explores users' perceptions of physiotherapy, challenges faced by users, possible options for management, and determines whether current physiotherapy practice in a rural Kilifi District general hospital in Kenya facilitates future self-management of chronic conditions. METHODS: Eight in-depth interviews, 3 focus groups discussions and 4 participant observations were conducted for data collection. All interviews and focus group discussions were recorded using a digital recorder, transcribed into the Swahili language and then translated into English. The transcriptions were imported to NVivo 9 (www.qsrinternational.com) for management and storage. Inductive data analysis was used to generate themes from the rich-text data of the transcriptions. RESULTS: Many of the users perceived physiotherapy as being effective. Challenges included distance from health facilities, negative experiences with some therapists, and lack of staff and equipment. Rehabilitation options included community- and home-based programs fostering self-management of chronic conditions. Current hospital practice lacks emphasis on self-management skills for patients with chronic conditions who can do their physiotherapy at home. CONCLUSIONS: Users' experiences of physiotherapy treatment in this rural hospital indicate that a host of challenges exist. In the face of these challenges, the needs of the users seemed to be compromised, especially those with chronic conditions. Rehabilitation services that are accessible and affordable would be better options in rural and low-resource settings. There is therefore need for community-based services that place emphasis on self-management of chronic conditions for fostering better health outcomes in rural communities.

Community-based rehabilitation (CBR) monitoring and evaluation methods and tools: a literature review.

PURPOSE: To identify and analyse tools and methods that have been reported in the literature for the monitoring and evaluation of community-based rehabilitation (CBR) programmes. METHOD: A literature review and descriptive analysis were carried out to scope CBR monitoring and evaluation methods and tools. A search was conducted using PubMed and Google Scholar databases, hand searches and reference lists. Reports were retrieved, screened and information was extracted and analysed against research questions. RESULTS: There were 34 reports which met the inclusion criteria. Analysis of the 34 reports showed that most reports used demographic and programme data. A range of methods were used: interviews, focus groups and questionnaires being the most common. Apart from this, no common standardised procedures or tools were identified and there was not a standard approach to the inclusion of people with disabilities or other CBR stakeholders. CONCLUSIONS: The findings suggest that there would be value in creating resources such as guidelines, common processes and checklists for monitoring and evaluation of CBR, to facilitate efficient and comparable practices and more comparable data. This needs to be done in partnership with people with disabilities, CBR providers, partners and researchers to ensure that all stakeholders' needs are understood and met. Implications for Rehabilitation While there is broad scope and complexity of CBR programmes, there needs to be consistency and a valid approach in the monitoring and evaluation methods and tools used by CBR programmes. The principles of CBR and CRPD require that monitoring and evaluation involve people with disabilities, CBR managers and staff not only as informants but also in the design and execution of monitoring and evaluation activities. The consistent use of appropriate and valid monitoring and evaluation methods and tools will contribute to developing a stronger evidence base on the efficacy and effectiveness of CBR.

The reasons for the epilepsy treatment gap in Kilifi, Kenya: using formative research to identify interventions to improve adherence to antiepileptic drugs.

Many people with epilepsy (PWE) in resource-poor countries do not receive appropriate treatment, a phenomenon referred to as the epilepsy treatment gap (ETG). We conducted a qualitative study to explore the reasons for this gap and to identify possible interventions in Kilifi, Kenya. Focus group discussions (FGDs) were carried out of PWE and their caregivers. Individual interviews were conducted of PWE, their caregivers, traditional healers, community health workers and leaders, nurses and doctors. In addition, a series of workshops was conducted, and four factors contributing to the ETG were identified: 1) lack of knowledge about the causes, treatment and prognosis of epilepsy; 2) inaccessibility to antiepileptic drugs; 3) misconceptions about epilepsy derived from superstitions about its origin; 4) and dissatisfaction with the communication skills of health providers. These data indicated possible interventions: 1) education and support for PWE and their caregivers; 2) communication skills training for health providers; 3) and improved drug provision.

Development and validation of the Kilifi Epilepsy Beliefs and Attitude Scale.

Epilepsy remains misunderstood, particularly in resource poor countries (RPC). We developed and validated a tool to assess beliefs and attitudes about epilepsy among people with epilepsy (PWE) in Kilifi, Kenya. The 50-item scale was developed through a literature review and qualitative study findings, and its reliability and validity were assessed with 673 PWE. A final scale of 34 items had Cronbach's alpha scores for the five subscales: causes of epilepsy (α=0.71); biomedical treatment of epilepsy (α=0.70); cultural treatment of epilepsy (α=0.75); risk and safety concerns about epilepsy (α=0.56); and negative attitudes about epilepsy (α=0.76) and entire scale (α=0.70). Test-retest reliability was acceptable for all the subscales. The Kilifi Epilepsy Beliefs and Attitude Scale is a reliable and valid tool that measures beliefs and attitudes about epilepsy. It may be useful in other RPC or as a tool to assess the effectiveness of interventions to improve knowledge, beliefs, and attitudes about epilepsy.

Indignity, exclusion, pain and hunger: the impact of musculoskeletal impairments in the lives of children in Malawi.

PURPOSE: To develop a conceptual model representing the impact of musculoskeletal impairments (MSIs) in the lives of children in Malawi. METHOD: A total of 169 children with MSIs (CMSIs), family and other community members participated in 57 interviews, focus groups and observations. An inductive approach to data analysis was used to conceptualise the impact of MSIs in children's day-to-day lives. RESULTS: The main themes that emerged were Indignity, Exclusion, Pain and Hunger. Indignity represents various affronts to children's sense of inherent equal worth as human beings, for example when bullied by peers. Exclusion refers to CMSIs being excluded from three core daily activities: school, play and household chores. Some CMSIs experienced Pain, for example as an outcome of striving to participate. Children with severe mobility impairments were at increased risk of Hunger, having less access to food outside the home and placing a burden of care on the family that could restrict household productivity. Household Poverty was therefore included in the model, as this household impact was inseparable from the impact on CMSIs. CONCLUSION: It is recommended that rehabilitation interventions are planned and evaluated with consideration to their impact on Exclusion, Indignity, Pain, Hunger and Household Poverty using multi-faceted partnerships.

Assessing and comparing the outcome measures for the rehabilitation of adults with communication disorders in randomised controlled trials: an International Classification of Functioning, Disability and Health approach.

PURPOSE: To identify the assessment instruments and relevant outcome measures used in randomised clinical trials (RCTs) relating to interventions for adults with communication disorders, and then examine and compare the domains of the outcome measures using the International Classification of Functioning, Disability and Health (ICF) as a reference tool. METHOD: Published RCTs with primary focus on the effectiveness of rehabilitation for adults with communication disorders were systematically reviewed. Identified RCTs were examined for all the assessments used as outcome measures. Distinctions were made between the use of standardised assessment tools and non-standardised empirical measures. The key concepts examined by the outcome measures were then linked to the ICF using the established ICF linking rules. RESULTS: The systematic review included 24 RCTs in which 11 trials used non-standardised empirical assessment as the outcome measure, and 18 trials included standardised instruments as the outcome measure. It is clear that all the identified items and meaningful concepts from the assessment used in the included studies can be linked to the ICF categories. Of the 108 linked level-two ICF categories, 53% were linked to 'body functions', 36% to 'activity and participation' and 9% to 'environmental factors'. CONCLUSIONS: A wide range of outcome measures have been used in RCTs of interventions for adults with communications disorders. The ICF provides a clarifying framework for systematically gathering and examining the information about the content of outcome measures and then can be used as a common reference to identify and compare the domains of the outcome measures. The high proportion of elements relating to body functions raises some questions about the purpose and aims of the interventions.

Assessing deaf and hearing children's communication in Brazil.

UNLABELLED: In Brazil there are no specific tests for either signed or spoken language for deaf children. A protocol evaluating communicative abilities independent of modality of communication (sign language or spoken language), and comprising assessments of (a) pragmatic profile; (b) modality of communication and linguistic level; (c) complexity of communication; and (d) style and efficacy of communication between parent and child was administered to 127 deaf and hearing children. The children, aged 3-6 years old, were distributed in three groups: 20 with severe hearing loss, 40 with profound hearing loss and 67 normally hearing. Deaf children were found to be delayed, independent of their linguistic level and preferred modality of communication. The protocol in this study proved to be an useful instrument for gathering relevant information about the three groups of preschool children's communicative abilities, and particularly suitable for use in countries where standardized assessments are not available. LEARNING OUTCOMES: The reader will be introduced to the use of an assessment protocol comprising its development, application and data analysis. The reader will be informed about assessment of deaf children's preferred modality of communication, by the participation of a bilingual (sign language user) professional. Communication abilities can be assessed independently of the linguistic modality. In developing countries in general, where simple and easy to administer assessments tools are scarce, such a protocol is of specific value.

Developing a tool for evaluating community-based rehabilitation in Uganda.

PURPOSE: The overall purpose of this study is to use the conceptual criteria of the 'Joint Position Statement (JPS)' (see http://www.ilo.org/public/english/employment/skills/download/jointpaper.pdf )on Community-based rehabilitation (CBR), together with the data collected from a CBR programme in Uganda (Tororo) to generate a prototype CBR evaluation tool. METHOD: A case study approach is used to examine the Tororo CBR programme. Project documentation was examined to generate base line data which was used to inform sampling for interviews and focus group discussions. These were conducted with a wide range of stakeholders. The interview and focus group data are recorded, translated, transcribed and imported into a computer-assisted analysis programme, NVivo. The data was analysed in two stages: (i) data led development of themes (ii) allocation of the generated themes to the conceptual structure of the 'JPS'. A third stage uses the data to generate an outcome measurement tool for evaluating CBR programmes. RESULTS: Fifty different themes were identified during the analysis and used to construct a questionnaire framed around the concepts of the 'JPS'. In addition, the questionnaire reflected the words and phrases used by participants. The outcome is a short and feasible tool for evaluating CBR programmes. CONCLUSION: The 'JPS' has been used as a framework for the analysis of qualitative data to generate the basis of a prototype evaluative questionnaire which can now be piloted, amended and then used for the evaluation of other CBR programmes.