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.

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.

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.

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.

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.

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.

Identification of people with disabilities using participatory rural appraisal and key informants: a pragmatic approach with action potential promoting validity and low cost.

BACKGROUND: Surveys have been the conventional methods used for identification of people with disabilities; however, they have been observed to be expensive and time-consuming that may not be affordable or practical. As a result, the participatory rural appraisal (PRA) and key informant (KI) approaches have been developed and increasingly used in the resource-poor countries. OBJECTIVE: To investigate the strengths and weaknesses of PRA and KI approaches in the identification of people with disability in resource-poor countries. METHOD: A review of published related papers was performed by searching electronic databases including PubMed, Scirus, Health on the Net (HON), Ovid Medline and SOURCE disability database. RESULTS: A total of 11 relevant papers were identified from the literature that used PRA or KI methods or both. The PRA and KI approaches were not only consistently less expensive than conventional surveys, but also observed to be simple and fast for identifying disabilities according to local perceptions, although they were less sensitive. The evidence showed that PRA and KI processes had the benefit of engaging and developing long-term partnerships with the local communities and so the likelihood of positive long-term impact on the community. CONCLUSIONS: The PRA and KI approaches could be fast and cost-effective methods for identifying people with disabilities as an alternative to surveys. They are especially useful when identification is related to subsequent development of community-based services for persons with disabilities. However, surveys were shown to be more sensitive and therefore more accurate for establishing prevalence rates of impairment.

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.

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.

Using community/researcher partnerships to develop a culturally relevant intervention for children with communication disabilities in Kenya.

PURPOSE: The objective of this study is to develop a culturally relevant community-based intervention for children with communication disabilities in Kenya through a community/researcher partnership. The resulting intervention is for use in a randomized control trial which will be reported at a later stage. METHOD: Using a qualitative approach, initial data was collected through focus group discussions with women, disabled people and traditional dancers. The groups examined the needs, problems and challenges faced by disabled children and their families. This generated the content and structure for a series of participatory workshops with a further two women's groups. These workshops strove to generate a culturally relevant community-based intervention programme for children with communication disabilities and their families. The content and balance of the resulting intervention was observed to be different from existing programmes described in the literature. Notably it included many culturally appropriate strategies for increasing social integration and raising community awareness. RESULTS: The process of generating a locally relevant community-based rehabilitation intervention is potentially transferable and has particular relevance to the estimated 80% of the world where there are no formal rehabilitation services for children with disabilities and where women's groups are a strong element of local culture. CONCLUSION: (i) Community/researcher partnerships can be used to develop interventions; (ii) such interventions are different from those imported from other cultures; and (iii) this process is transferable and can be part of the preparations for a Randomized Control Trial.

Systematic synthesis of community-based rehabilitation (CBR) project evaluation reports for evidence-based policy: a proof-of-concept study.

BACKGROUND: This paper presents the methodology and findings from a proof-of-concept study undertaken to explore the viability of conducting a systematic, largely qualitative synthesis of evaluation reports emanating from Community Based Rehabilitation (CBR) projects in developing countries. METHODS: Computer assisted thematic qualitative analysis was conducted on recommendation sections from 37 evaluation reports, arising from 36 disability and development projects in 22 countries. Quantitative overviews and qualitative summaries of the data were developed. RESULTS: The methodology was found to be feasible and productive. Fifty-one themes were identified and the most important ones of these are presented to illustrate the significance of the method. The relative priorities of these themes indicated that "management" issues were the primary areas in which recommendations were made. Further analysis of themes reflected the emphasis evaluators placed on the need for enhanced management, organisational, personnel and administrative infrastructure in CBR projects. Evaluators consistently recommended that CBR projects should be more connected and collaborative at governmental, organisational, political and community levels. The synthesis also noted that evaluators questioned the emphasis in CBR on project expansion and income generation. CONCLUSION: The application of the synthesis methodology utilised in this proof-of-concept study was found to be potentially very beneficial for future research in CBR, and indeed in any area within health services or international development in which evaluation reports rather than formal "research evidence" is the primary source material. The proof-of-concept study identified a number of limitations which are outlined. Based on the conclusions of 37 evaluation reports, future policy frameworks and implementation strategies in CBR should include a stronger emphasis on technical, organisational, administrative and personnel aspects of management and strategic leadership.

The key informant method: a novel means of ascertaining blind children in Bangladesh.

BACKGROUND: Most information on the causes of blindness has come from examining children in special education. To obtain a more representative population-based sample of children, a novel method was developed for ascertaining severe visually impaired (SVI) or blind (BL) children by training local volunteers to act as key informants (KIs). OBJECTIVE: To compare the demography and cause of blindness in children recruited by KIs with other ascertainment methods. METHOD: Children with SVI/BL were recruited in all 64 districts of Bangladesh. Three sources for case ascertainment were utilised: schools for the blind (SpEdu), community-based rehabilitation (CBR) programmes and KIs. All data were recorded using the standard WHO/PBL Eye Examination Record. RESULTS: 1935 children were recruited. Approximately 800 KIs were trained. The majority of the children were recruited by the KIs (64.3%). Children recruited by KIs were more likely to be female (odds ratio (OR) 1.6, p<0.001), of pre-school age (OR 14.1, p<0.001), from rural areas (OR 5.9, p<0.001), be multiply impaired (OR 3.1, p = 0.005) and be suffering from treatable eye diseases (OR 1.3, p = 0.005) when compared with those in SpEdu. Overall a child with an avoidable causes of SVI/BL had 40% (adjusted CI 1.1 to 1.7, p = 0.015) and 30% (CI 1.0 to 1.7, p = 0.033) higher odds of being ascertained using the KIs compared with SpEdu and CBR methods, respectively. CONCLUSION: Using this innovative approach has resulted in one of the largest studies of SVI/BL children to date. The findings indicate that KIs can recruit large numbers of children quickly, and that the children they recruit are more likely to be representative of all blind children in the community.

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.

A process for the systematic review of community-based rehabilitation evaluation reports: formulating evidence for policy and practice.

A methodological framework for conducting a systematic, mostly qualitative, meta-synthesis of community-based rehabilitation (CBR) project evaluation reports is described. Developed in the course of an international pilot study, the framework proposes a systematic review process in phases which are strongly collaborative, methodologically rigorous and detailed. Through this suggested process, valuable descriptive data about CBR practice, strategies and outcomes may be synthesized. It is anticipated that future application of this methodology will contribute to an improved evidence base for CBR, which will facilitate the development of more appropriate policy and practice guidelines for disability service delivery in developing countries. The methodology will also have potential applications in areas beyond CBR, which are similarly "evidence poor" (lacking empirical research) but "data rich" (with plentiful descriptive and evaluative reports).

Using participatory rural appraisal (PRA) in the identification of children with disabilities in rural Kilifi, Kenya.

INTRODUCTION: Cross-sectional surveys have been used widely for identifying children with disabilities, but they have several disadvantages. The surveys concentrate on identifying impairments and do not encourage the participation and ownership of the community. Participatory rural appraisal (PRA) provides a cost-effective and efficient method that reflects the local perceptions of disability and involves local people. These factors are important for sustainability in resource-poor countries. PURPOSE: To evaluate the application of PRA to identifying children with disabilities in a rural setting. METHODS: PRA was used to identify children with disabilities in two rural sub-locations in Kilifi, Kenya. Data were collected through 12 focus group discussions and 12 social mapping activities. A purposive convenience sample of teachers, village leaders and women groups participated in the PRA. The perceptions of disability were established before identification of the children. The categories of identification were based on these local perceptions. The qualitative data were analyzed thematically and validation was performed through triangulation. RESULTS: Disability was perceived locally as the existence of impairments, activity limitations and participation restrictions. Disabilities were associated with traditional beliefs including witchcraft, evil spirits and punishments from God. In some cases these categories were mutually exclusive and in others they were concurrent. Children who had lost their parents and were not being cared for by relatives (disadvantaged orphans) were also perceived as disabled children by teachers and local women, but not by community leaders. CONCLUSION: The results suggest that PRA is an efficient and cost-effective method of identifying children with disabilities according to local perceptions, and it may be useful in community-based rehabilitation as an alternative to surveys.

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.

Development of a 'communication disability model' and its implication on service delivery in low-income countries.

This paper argues that higher priority should be given to the development of services which support people with communication disabilities in low income countries and that these services should be different from those in other countries. Present services for this population group have poor coverage levels, tend to be centrally located and are orientated to specialist services. WHO (Health Programme Evaluation, Geneva, WHO, 1981) argue that health services should be based on meeting people's needs. This paper describes an analysis of 'needs related' qualitative data concerning people with communication disabilities and their families in two low income countries and examines the results in relation to service development. The data was collected as part of five different studies concerning people with communication disabilities carried out in Uganda and Nigeria. Using the principles of established theory, these data helped develop, a theoretical model. This model is compared with WHO's classification of Impairment Disability and Handicap ICIDH-2 WHO (International Classification of Impairments Disabilities and Handicaps (ICIDH-2), A manual of classification relating to the consequences of diseases, Geneva, WHO. 1997a; 1999). Suggestions are made as to how this model might inform planning and practice from the perspective of the five major stakeholder groups; government and non-government organizations, people with communication disabilities, their families and professionals. Consideration is also given as to how this theory can be used to strengthen existing services, or encourage a complete paradigm shift, with the creation of different services in new and innovative ways.

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.