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Purpose: Although cerebral palsy is the most prevalent health condition linked to childhood disability in Bangladesh, support and rehabilitation for this group is limited and intervention development is slow. An initiative to address these unmet needs was the development of a parent training programme for the rehabilitation of children with cerebral palsy. The aim of this study was to explore what was important in the everyday lives of children with cerebral palsy in rural Bangladesh and take their views into account in order to inform the parent/caregiver training programme.

Methods: Qualitative data was collected from12 children with cerebral palsy, between 5 - 14 years of age. The children were purposively selected from among those who attended the parent training programme. A participatory method called the ‘Feeling Dice’ was used to elicit children’s feelings about their everyday lives. The approach was easy to use, acceptable in the local context, the children enjoyed the activity, and it generated rich information.

Results: ‘Inclusion in play’ and ‘being able to attend school’ made the children happy and were their two main priorities, yet were not key issues for parents. The children were frustrated by their dependence on others for day-to-day activities such as feeding, bathing, and transport to school. Children also played an important part in encouraging their parents to attend the training course.

Conclusion: This study showed that valuable information can be gathered from children with cerebral palsy by using a simple and adaptable participatory research tool. Children’s views and priorities sometimes differed from those of their parents and carers, and could be useful for developing more relevant and valid interventions. Children need to be recognised as important ‘agents of change’ within their own rehabilitation. This methodology is in harmony with the UNCRPD recommendations, and supports inclusive and rights-based intervention development.

Purpose: In low- and middle-income countries, reliable and disaggregated disability data on prevalence, participation and barriers is often not available. This study aimed to estimate disability prevalence, determine associated socio-demographic factors and compare access in the community between people with and without disability in Dehradun district of Uttarakhand, India, using the Rapid Assessment of Disability Survey.

Methods: A cross-sectional population-based survey was conducted on a sample of 2431 adults, selected using a two-stage cluster randomised sampling technique. The survey comprised an interviewer-administered household survey and an individual survey measuring disability, wellbeing and participation.  For each person with disability, an age and sex-matched control (without disability) was selected. In addition to prevalence, the difference in participation and barriers faced by people with and without disability were analysed.

Results and Conclusions: The prevalence of disability was 6.8% (95% CI 5.8-7.8) with significant associations with age, sex, economic status, education and employment. Psychosocial distress (4.8%) and mobility impairment (2.7%) were the most common disabilities identified. The study showed that people with disabilities had significantly less access to services than those without disability, and the barriers reported most often were lack of information, transport and physical inaccessibility.

Purpose: This exploratory case study was undertaken to inform capacity development of the rehabilitation workforce in member nations of the Pacific Islands Forum (PIF).

Method: Participants at the 1st Pacific CBR Forum in June 2012 were key informants for this study. They comprised the disability focal points from government departments in each of the 14 countries, representatives of DPOs and disability service providers. The study was conducted in 3 phases:  a template to gather data on rehabilitation workers; key informant interviews; and, stakeholder workshops to identify strengths and needs of the rehabilitation workforce in the Pacific.

Results: The detailed case study findings suggest two critical drivers for rehabilitation health workforce development in the Pacific context. The first is leadership and commitment from government to serve rehabilitation needs in the community. The second is the urgent need to find alternative ways to service the demand for rehabilitation services as it is highly unlikely that the supply of specialist personnel will be adequate.

Conclusions: A multi-sectoral view of health and social service systems is a key element for the development of a rehabilitation health workforce. The endorsement of the WHO Global Disability Action Plan by the World Health Assembly in 2014 further enhances the opportunity to work collaboratively across sectors in Pacific countries. Specialist personnel are and will remain in short supply. There is opportunity for the region to lead the development of alternate workforce mechanisms through the training and supply of skilled community-based rehabilitation personnel.

Early detection and intervention for any degree of hearing loss is critical to the linguistic, social and educational development of children with auditory deficit. Since parents and family members are in a position to identify hearing loss at an early stage, they can play a vital role in achieving the goals of early identification and intervention for their children.

Purpose: This study was conducted to determine the age at which parents and significant others begin to suspect hearing impairmentin their children, and to advocate for using them as resource persons in the early detection of hearing loss.

Method: Parents of children with hearing impairment were retrospectively surveyed and interviewed to determine the age at which suspicion, diagnosis, fitting of amplification and initiation of interventions occurred.

Results: Interviews revealed the average age to be 16.5, 24.3, 31.7 and 33.4 months, for suspicion, diagnosis, fitting of amplification and initiation of early intervention for hearing loss respectively. The obtained age of suspicion is lower than the age of identification of hearing loss reported in Indian literature. The current study found delays in diagnosis and fitting of amplification, both of which are essential to initiate early remedial programmes which facilitate development of speech and language skills in children with hearing impairment. Surprisingly, it was found that these delays were caused by professional failures.

Conclusion: It is emphasised that parents are in the best position to detect hearing problems in their children, and can be effectively utilised as manpower/ equal partners in achieving the goal of early identification of hearing loss. The study outlines appropriate ways and means to facilitate early identification and provide effective intervention for children with hearing impairment.

Purpose: Post-polio Syndrome (PPS) affects polio survivors many years after the initial attack, and causes new musculoskeletal symptoms and decline in physical function. This study aims to compare the effect of exercise and lifestyle modification versus lifestyle modification alone, on fatigue and functional capacity in persons with PPS.

Method: An experimental study was conducted at the physiotherapy department of VS Hospital in Ahmedabad. As per the criteria of Halstead (1985), 21 PPS subjects who were between 18 and 65 years of age, and able to walk indoors and outdoors, with or without assistive aids, were included. They were randomly allocated into 3 groups using the envelope method. Those with physician- diagnosed respiratory or cardiac insufficiency, disabling co-morbidity which interfered with the intervention programme or influenced the outcome, and those unable to cooperate due to cognitive impairment or use of any psychotropic drugs, were excluded. Fatigue and functional capacity were measured using Fatigue Severity Scale (FSS) and 2-minute walk distance, respectively. Physical and psychological functions were assessed using Patient Reported Outcome Measurement Information System (PROMIS) questionnaire and Patient Health Questionnaire (PHQ-9) respectively. Intervention was given for 5 days a week, over 4 weeks. Group A received exercise and lifestyle modification, group B received lifestyle modification alone and group C continued their usual routine for 1 month.

Results: There was a significant difference in fatigue and functional capacity within groups A and B, with group A showing better reduction in fatigue than groups B or C. Physical function improved only within group A, and a significant difference was seen compared to groups B and C. Psychological function showed no difference within or between the groups.

Conclusion: There was improvement in fatigue, functional capacity and physical function in PPS subjects after 4 weeks of exercise and lifestyle modification. Lifestyle modifications alone for 4 weeks improved fatigue and functional capacity in PPS subjects. There is significant reduction in fatigue and improvement in functional capacity when lifestyle modification advice is given along with exercise.

Purpose: Since very young people benefit from early identification of communication disorders, the primary caregivers (generally the parents) become the fulcrum of the intervention services provided. This article deals with the measures taken to empower caregivers, as part of the early intervention services offered at the All India Institute of Speech & Hearing (AIISH) in Mysore city in India, and the impact this has had on their wards’ progress.

Method: A survey was conducted among the caregivers of 205 clients who availed of early intervention services. Five-pronged data were collected, pertaining to family demographic details, early intervention measures for their children with communication disorders, type and intensity of caregiver empowerment measures provided along with early intervention services, resultant caregiver participation in the education and training of their wards, and the consequent development in children with communication disorders. The mutual influences among these factors were analysed using simple correlation measures.

Results: The findings revealed that informal, but continuous and consistent efforts to empower parents, such as counselling and guidance, had a better impact. Empowered caregivers in turn contributed towards the education and training of their children with communication disorders, resulting in improved development of their wards’ communication skills and academic achievements.

Conclusion: The evidence adds strength to recommendations that caregiver empowerment and participation need to become integral components of early intervention services for young children with special needs.

Purpose: The United Nations Convention on the Rights of Persons with Disabilities recognises assistive technology such as wheelchairs (WCs) as a tool for social inclusion for this population. In less resourced settings, organisations lack information about effective models of WC service provision. The goal of this study was to investigate the lifespan of WCs and whether they provided reliable mobility, at one clinic in Mexico.

Methods: Caregivers of children, who had requested replacements for their WCs from a clinic in Mexico, were interviewed in Spanish. Among others, the questions pertained to repairs/modifications, adverse events and WC usage characteristics. The owners exchanged their WCs for new ones at the clinic, and the maintenance status of each returned WC was evaluated using the WC Assessment Checklist (WAC).

Results: Twenty-three donated WCs, used by children aged 3 to 14 years for an average of 19 months, were evaluated. Brakes (n=18), seat and back-sling upholstery (n=11 and 7 respectively), and armrests (n=14) were the components that failed most frequently. A total of 26 adverse events due to WC failure were reported. Adverse events were significantly associated with poor WAC scores (rs=-0.544, p=0.007).

Conclusions: Poor WC reliability, associated with adverse events which could undermine social engagement, indicates the need for a stronger WC and for regular maintenance. For instance, brake failures which were most often associated with adjustment issues, could have been resolved with maintenance, while seat and back-sling upholstery and armrest failures suggest that the WC may not be appropriate for the environment. Future work should investigate the robustness of these WCs using standardised methods (ISO 7176), as well as the impact of maintenance interventions on WC reliability.

Purpose: This paper reports the process of development of a CBR programme by UP Manila College of Allied Medical Professions, and its impact on the stakeholders: persons with disabilities, students and alumni, CBR workers, local leaders and the agencies involved in the programme.

Method: The impact of the programme was assessed through interviews, questionnaires, focus group discussions and review of secondary data and records.

Results: The programme results show that the condition of persons with disabilities has improved and there has been a remarkable change in their knowledge, attitudes and skills. The positive attitudes, skills and values of students were enhanced, and the CBR programme was a “character builder” for them as rehabilitation professionals. The CBR workers who participated in the programme learnt to appreciate the potential of persons with disabilities and to accept their limitations. Another key result was the pledge by local leaders to sustain CBR in their own villages.

Conclusions: The students and alumni reported that the CBR programme should be replicated for nation-building. The different stakeholders reported that it helped improve the quality of life of people with disabilities and contributed to community development.