Sally Hartley

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.

Community-based rehabilitation: opportunity and challenge.

Community-based rehabilitation (CBR) is the main way in which disabled people in most of the world have any chance of accessing rehabilitation services. CBR was first promoted by WHO in the mid-1970s to address the shortage of rehabilitation assistance by providing services in the community with use of local resources. The strategy drew on the principles of primary health care, accepted international rehabilitation practices of the time, and also existing local practices.

Understanding how women's groups improve maternal and newborn health in Makwanpur, Nepal: a qualitative study

Womens groups, working through participatory learning and action, can improve maternal and newborn survival. We describe how they stimulated change in rural Nepal and the factors influencing their effectiveness. We collected data from 19 womens group members, 2 group facilitators, 16 health volunteers, 2 community leaders, 21 local men, and 23 women not attending the womens groups, through semi-structured interviews, group interviews, focus group discussions and unstructured observation of groups. Participants took photographs of their locality for discussion in focus groups using photoelicitation methods. Framework analysis procedures were used, and data fed back to respondents. When group members were compared with 11 184 women who had recently delivered, we found that they were of similar socioeconomic status, despite the context of poverty, and caste inequalities. Four mechanisms explain the womens group impact on health outcomes: the groups learned about health, developed confidence, disseminated information in their communities, and built community capacity to take action. Womens groups enable the development of a broader understanding of health problems, and build community capacity to bring health and development benefit.

Service development to meet the needs of ' people with communication disabilities ' in developing countries

PURPOSE In spite of the catastrophic consequences of impaired communication skills on the quality of human life, development of services for people with communication disabilities have low priority in health care and rehabilitation. Nowhere is this more apparent than in developing countries. The low coverage levels of the limited services which do exist in these countries, indicate a need to develop new and innovative service structures. It is to this end, given the limited literature available, that this review looks mainly at articles of a descriptive nature based on clinical experience. The review seeks to identify ideology which could be used to under-pin alternative service delivery and structures. METHOD Three collections of literature relevant to the topic under discussion are identified, one collection relates to impairment categories, one to disability perspectives and one to speech and language therapy provision. It is recognized that all three collections are needed to form a basis for innovative change, but this review aims to examine the latter collection only, referring the reader to items in the other collections, when relevant. RESULTS The information reviewed is analysed for recurring themes and the results are seen to concur with many of the disability perspectives expressed in present day literature.

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.

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.

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.

Challenges in linking health-status outcome measures and clinical assessment tools to the ICF

This discussion paper focuses on using the International Classification of Functioning, Disability and Health (ICF) as a universal framework to examine health status outcome measures and clinical assessments. It reports challenges experienced whilst linking some assessment tools used by the allied health professions to the ICF. These included: establishing a common understanding of the ICF categories and structure; developing a common understanding of the linking rules; establishing the meaningful concepts contained in the assessment tools, and establishing the consensus in the linking process. It is recognized that the ICF does offer a standardized framework for describing health status, but on-going dialogue and debate between professions is required for reaching a standardized linking process. Ways to increase the reliability of the linking process will be critical to its success. The challenges described in linking the assessment tools to the ICF, can make a further contribution to that debate, and encourage others to similarly look at their own work.

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

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

Abstract 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.