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Lived Experience of Psychosocial Disability and Social Inclusion: A Participatory Photovoice Study in Rural India and Nepal

FERNANDES, Helen Lea
CANTRILL, Stephanie
SHRESTHA, Ram, Lal
RAJ, Rachel, Belda
ALLCHIN, Becca
KAMAL, Raj
BUTCHER, Nicole
GRILLS, Nathan
2018

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Purpose: This study aimed to investigate the experiences of people living with a psychosocial disability in rural India and Nepal, and to highlight key barriers and enablers for inclusion.

 

Method: Participatory action research approaches and Photovoice methodology were employed to investigate the lived experience of 32 participants in rural India and Nepal. There were 12 participants and 4 caregivers of people with psychosocial disability from each of the two countries. Semi-structured interviews with study participants were transcribed and analysed thematically to answer the study question.

 

Results: The findings revealed themes related to various supports, meaningful engagement in activity, and community awareness. Among these categories were both enabling and impeding factors to inclusion, the presence or absence of which was typically associated with improvements or worsening of symptoms respectively.

 

Conclusions and Implications: This study underscores the need for integrated community-based approaches that are multisectoral, inclusive of family, and strengthen community responses. Photovoice was also shown to be a feasible research methodology for providing insights into the lived experience of people with psychosocial disability and for fostering their empowerment

Disability, CBR & Inclusive Development (DCID), 2018, Vol. 29 No. 2

2018

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Research articles are:

  • Lived Experience of Psychosocial Disability and Social Inclusion: A Participatory Photovoice Study in Rural India and Nepal
  • Barriers and Facilitators for Wheelchair Users in Bangladesh: A Participatory Action Research Project
  • A Cross-sectional Survey of Rehabilitation Service Provision for Children with Brain Injury in Selangor, Malaysia
  • Effect of Abacus Training on Numerical Ability of Students with Hearing Loss
  • Cross-Cultural Adaptation and Evaluation of Psychometric Properties of Persian Version of Supports Intensity Scale among Adults with Intellectual and Developmental Disabilities

Review:

  • Developmental Social Work for Promoting the Socioeconomic Participation of Persons with Disabilities: An Application of the Capability Approach

Brief reports:

  • Zero Rejection Policy in Admission of Children with Special Needs - Myth or Reality
  • Ujamaa and Universal Design: Developing Sustainable Tactile Curricular Materials in Rural Tanzania

Cost-effectiveness of a Community-based Rehabilitation Programme in Nepal

Vaughan, Kelsey
Thapa, Aradhana
2016

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Purpose: This study aimed to estimate the cost-effectiveness of a community- based rehabilitation (CBR) programme known as Inspire2Care (I2C), implemented in Nepal by Karuna Foundation Nepal. In the absence of any gold standard methodology to measure cost-effectiveness, the authors developed a new methodology to estimate the programme’s achievements and cost-effectiveness.

 

Methods: Financial records were reviewed to determine total expenditure during the period August 2011 - December 2013. Programme records which documented the physical, mental and social status of children and adults with a disability qualitatively before, during and after the intervention were used to determine a starting disability weight and improvement score, which was then converted into a change in disability weight. The disability weight and expected remaining lifespan of each person were used to estimate disability-adjusted life years (DALYs) averted by the intervention. The cost per DALY averted was estimated by dividing the total programme expenditure by the sum of DALYs averted over that same period.

 

Results: I2C cost 204,823 Euros to implement over the period August 2011- December 2013. In total, an estimated 1,065 DALYs were averted from the treatment and rehabilitation components. The cost per DALY averted was 192.34 Euros.

 

Conclusions and Implications: The methodology devised for the study was able to successfully estimate the cost-effectiveness of the I2C programme. Using WHO benchmarks, this programme can be considered highly cost-effective. Other organisations can assess the cost-effectiveness of their programmes by using the assessment improvement score and subsequent conversion to DALYs averted. However, while mental, physical and social gains have been captured, other benefits from I2C cannot be captured in the cost per DALY averted statistic. Further research is needed to develop methods for incorporating these harder-to- measure gains in cost-effectiveness studies with a single outcome measure like the DALY.

Disability Inclusion in Primary Health Care in Nepal: An Explorative Study of Perceived Barriers to Access Governmental Health Services

VAN HEES, S
CORNIELJE, H
WAGLE, P
VELDMAN, E
2015

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Purpose: Persons with disabilities face additional barriers in accessing primary healthcare services, especially in developing countries. Consequently the prevalence of secondary health conditions is higher among this population. This study aims to explore the perceived barriers to access primary healthcare services by persons with disabilities in the Western region of Nepal.

 

Methods: 10 primary healthcare providers and 11 persons with disabilities (physically or visually impaired) were selected by non-governmental organisations from the hilly and lower areas. Based on the International Classification of Functioning and the health accessibility model of Institute of Medicine, semi-structured interviews were conducted and analysed using analytical induction.

 

Results: In general, healthcare providers and persons with disabilities reported similar barriers. Transportation and the attitude of family members and the community were the main environmental barriers. Even with assistive devices, people still depend on their families. Financial barriers were lack of funds for health expenses, problems in generating an income by persons with disabilities themselves, and the low socio-economic status of their families. Personal barriers, which affect help-seeking behaviour in a major way, were most often mentioned in relation to financial and socio-environmental barriers. Low self-esteem of the person with disability determines the family’s attitude and the motivation to seek out healthcare. Lastly, poor public awareness about the needs of persons with disabilities was reported.

 

Conclusions: Besides the known physical environmental barriers, this study found several environmental, financial and personal barriers that also affect access to primary healthcare. In particular, the attitudes of families and poor financial conditions seem to be interrelated and greatly influence help-seeking behaviour.

Children with Disability in Nepal: New Hope Through CBR?

MOL, Tanja Ingeborg
BRAKEL, Wim Van
SCHREURS, Merel
2014

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Purpose: This study assesses the impact of a community-based rehabilitation (CBR) programme on the quality of life (QoL) of children with disability and their families.

 

Methods: A qualitative approach was applied, using two techniques - a ranking line and semi-structured interviews. Nineteen children (ranging from 4 –18 years of age) were interviewed in their homes located in three villages - Chapakhori, Bokraha and Madesha - in Nepal.

 

Results: Children with disability and their families ranked physical health, psychological health, empowerment and level of independence as the most important factors for their QoL. Of the 19 children, 13 had experienced positive changes in their life and 1 child reported a negative change. The positive changes related mainly to their physical health and functioning. The impact of these changes was felt in the ‘social’, ‘level of independence’ and ‘empowerment’ outcome categories. The children mentioned that they had more friends, experienced less stigma, could go to school and were more hopeful about the future.

 

Conclusions: This CBR programme has brought about changes in the QoL of all children with disability and their families. The majority of them reported a positive impact.

 

 

Promoting Prosocial Beliefs and Behavior Toward People with Disabilities in Nepal through a Children’s Entertainment-Education Program

STRONG, D A
BROWN, W J
2011

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Purpose: This quasi-experimental field study examines the prosocial influences of a children’s entertainment-education television programme, Khushi Ko Sansar, on children’s beliefs and intended behaviour towards people with disabilities in Nepal.

 

Method: Pre-test and post-test survey data were gathered from 357 Nepali children from nine communities that took part in the study. The children were shown two television episodes in which the star of the programmes, a dog named Khush, befriends and visits people with disabilities.

 

Results: Post-test results show that children developed strong identification with Khush and adopted his prosocial beliefs and behaviour towards people with disabilities.

 

Conclusions: The authors conclude that the entertainment-education television programme, Khushi Ko Sansar, provided a positive role model for children who encounter people with disabilities. Implications of these findings suggest that entertainment- education media can improve the treatment of people with disabilities and can promote beneficial health beliefs and practices.

Quality of Life, Perceived Stigma, Activity and Participation of People with Leprosy-Related Disabilities in South-East Nepal

BROUWERS, C
VAN BRAKEL, W H
CORNIELJE, H
POKHREL, P
DHAKAL, K P
BANSTOLA, N
2011

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In Nepal, many people live with leprosy-related disabilities. The objective of this stdy was to evalate dierences in socio-economic characteristics, ality of life , perceived stima, activity and participation amon people aected by leprosy as a group and between this group and the general population, and to identify prime determinants of among the leprosy-aected people.

 

People with leprosy-related disabilities (N=100; 54DGI/46DGII) and community controls (N=100) were selected from Morang district, South-East Nepal, using uota sampling. , perceived stigma and participation and activity limitations were measured using the Nepali abbreviated version of the World Health Organisation Quality of Life (WHOQOL) assessment and the Nepali versions of the Jacoby Scale, Participation Scale and Green Pastures Activity Scale (GPAS), respectively.

 

Total QOL, participation and activity levels of people aected by leprosy were worse than those of the general population. Regression analysis showed that the ability to maintain a family, satisfaction with health, vocational training, se, activity and participation limitations (the laer for QOL only), perceived stigma and living situation (i.e. joint family, type of house) were signicantly associated with a deterioration in QOL and higher participation restriction in one or both of the grading groups.

 

There is an urgent need for interventions focused on uic referral of people with leprosy, to minimize the development of visible impairments, and social rehabilitation. The laer can be achieved by creating more public awareness, providing (nancial) support for income generating projects and /or vocational training to leprosy- aected people, and by encouraging them to be involved in all community development activities. The current results indicate that such measures would help improve the uality of life of people with leprosy-related disabilities.

 

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