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Narratives Around Concealment and Agency for Stigma-reduction: A study of Women affected by Leprosy in Cirebon District, Indonesia

PETERS, R. M. H
HOFKER, M. E
VAN BRAKEL, W H
ZWEEKHORST, M B M
SEDA, F S S E
IRWANTO, I
BUNDERS, J F G
2014

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Purpose: This study analyses the experiences of women affected by leprosy, taking into consideration whether they concealed or disclosed their status, and looks specifically at their ‘agency’. The aim is to provide recommendations for stigma-reduction interventions.

 

Methods: The study population consisted of women affected by leprosy who live in Cirebon District, Indonesia. Study subjects were purposively selected on the basis of characteristics such as age and role in the community. After informed consent was obtained, they were interviewed in their homes. Data was collected through semi-structured in-depth interviews. Analysis was done with six points of focus: who knows, care, social stigma, feelings, self-isolation and agency.

 

Results: In total, 53 women were interviewed. Eight were omitted due to ambiguity over who knew about their leprosy status. Five different categories of ‘disclosure’ were identified, ranging from 1 woman who concealed completely to 19 (42%) who disclosed fully. Disclosure created possibilities for care and support, which 84% mentioned they received. In contrast, disclosure was also found to be linked to negative feelings, isolation and social stigma, which 18 women experienced. The women coped with this through acceptance, comforting themselves, trusting in God, focussing on recovery, friendship or finding inspiration in others. 

 

Conclusions: An analysis of these experiences helps to understand how women affected by leprosy are coping, and what they are already doing for and by themselves. This could be a starting point for more appropriate and effective stigma-reduction interventions. It is recommended to consider the following: i) assisting people with their choice, if any, of either concealment or disclosure, ii) the appropriateness of any intervention for people who (want to) conceal their illness, iii) the existing sources of care and support, and iv) the inner strength demonstrated and its three sources (spirituality, relationships and the desire to be cured).

Fatigue and Functional Capacity in Persons with Post-Polio Syndrome: Short-term Effects of Exercise and Lifestyle Modification Compared to Lifestyle Modification Alone

SHARMA, S S
SHETH, M S
VYAS, N J
2014

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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.

Social participation of diabetes and ex-leprosy patients in the Netherlands and patient preference for combined self-care groups

DE VRIES, Henry JC
DE GROOT, Roos
VAN BRAKEL, Wim H
August 2014

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This study compared the social constraints of diabetic patients and ex-leprosy patients and investigated combined self-care groups for ex-leprosy patients and diabetic patients. The physical complications and social problems in ex-leprosy and diabetic patients with neuropathy are similar. Despite the fact that diabetic patients preferred disease-specific, homogeneous self-care groups, the authors believe that the option of combined groups is a promising strategy. Therefore, further research is warranted into the acceptance and impact of self-care groups as a strategy to reduce social constraints by diseases causing neuropathy 

Frontiers in Medicine, Vol 1

Surviving spinal cord injury in low income countries

ODEROD, Tone
August 2014

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Life expectancy and the situation of persons living with Spinal Cord Injury (SCI) in low income settings was explored. Mortality rates from injuries and challenges in daily lives of people with injuries from poorer economic backgrounds are were investigated and are compared with those with higher incomes. Literature studies and qualitative methods were used. Qualitative data was collected through semi-structured interviews with 23 informants from four study sites in Zimbabwe representing persons with SCI, their relatives and rehabilitation professionals.

There are few publications available about life expectancy and the daily life of persons with SCI in low income countries. Those few publications identified and the study findings confirm that individuals with SCI are experiencing a high occurrence of pressure sores and urinary tract infections leading to unnecessary suffering, often causing premature death. Pain and depression are frequently reported and stigma and negative attitudes are experienced in society. Lack of appropriate wheelchairs and services, limited knowledge about SCI amongst health care staff, limited access to health care and rehabilitation services, loss of employment and lack of financial resources worsen the daily challenges.

Conclusion: The study indicates that life expectancy for individuals with SCI in low income settings is shorter than for the average population and also with respect to individuals with SCI in high income countries. Poverty worsened the situation for individuals with SCI, creating barriers that increase the risk of contracting harmful pressure sores and infections leading to premature death. Further explorations on mortality and how individuals with SCI and their families in low income settings are coping in their daily life are required to provide comprehensive evidences.

Surviving polio in a post-polio world

GROCE, Nora
BANKS, Lena Morgan
STEIN, Michael Ashley
April 2014

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This paper reviews what is currently known about disabled survivors of polio and highlights areas of need in public health research, policy and programming. Based on a literature review, discussion and field observations, the authors identify continuing challenges posed by polio and argue that the attention, funding and commitment now being directed towards eradication be shifted to provide for the rehabilitative, medical, educational and social needs of those for whom the disabling sequelae of polio will remain a daily challenge for decades to come

Social Science & Medicine, Vol 107

Presentation and Impact of Pain in Persons with Post-Polio Syndrome: A Cross-sectional Survey Study

SHETH, M S
GHOGHARI, B
VYAS, N J
2014

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Purpose: It is a common and well‐recognised phenomenon that functional deterioration occurs many years after people are affected by poliomyelitis infection. This study aims to determine the presentation of pain in subjects with post-polio syndrome (PPS) and also the correlation between severity of pain and interference in activities of daily living (ADL).

 

Method: A cross-sectional survey was conducted among 72 persons with PPS in Gujarat state in India. Each one was given a self-administered questionnaire which included an 11‐point Numeric pain rating scale (NRS) for intensity of pain, questions about site, duration and diurnal variation of pain, and an 11‐point Numeric pain rating scale for pain interference.

 

Results: The study showed that 17 persons (24%) had only joint pain, 28 (39%) had only muscular pain and 27 (37%) had both joint as well as muscular pain. The highest number of subjects or 34 persons (47%) had knee pain, followed by 24 (33%) with shoulder pain, 21% with hip and 19% with low back pain. Muscle pain was maximum in arm musculature, as reported by 33 persons (45%), followed by pain in leg and foot muscles among 25 (36%) and 17 (23%) persons, respectively. Maximum number of subjects or 31% had pain while working which was relieved by rest, while 28 % had pain which continued all day. 43% experienced more pain in winter while 57% had no seasonal variation in pain. 30 persons (42%) had severe pain, 26 had moderate pain and only 16 had mild pain. Mean pain intensity was 5.88 ±1.52. Interference in ADL on NRS was 4.72 ±2.70. Interference in ADL and pain intensity were found to be positively correlated with Pearson’s co-efficient r=0.6295(p<0.0001).

 

Conclusion: The majority of those who had recovered from polio experienced increased or new symptoms and problems in ADL, muscle pain, joint pain, and difficulties in walking.

Perceived Needs Related to Social Participation of People with Leprosy-related Disabilities and other People with Disabilities in Cambodia: A Qualitative Study

HEEREN, Marie-Julie J
KY, Lai
VAN BRAKEL, Wim H
2014

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Purpose: The objective of this study was to describe the similarities and differences in perceived needs related to social participation of persons with leprosy-related disabilities and other persons with disabilities in Cambodia, and to suggest key interventions to promote participation in the community.

 

Methods: A cross-sectional study was conducted. People with leprosy-related disabilities were selected at home during field visits or at the rehabilitation centre for people with leprosy in Phnom Penh. People with locomotor disabilities were selected at the rehabilitation centre for persons with disabilities in Phnom Penh and Prey Veng. A pilot-tested, face-to-face semi-structured interview, with open and closed questions, and focus group discussions were used to investigate the perceived needs related to social and economic participation in the community. The interview was based on the International Classification of Functioning, Disability and Health (ICF) model of the WHO.

 

Results: Both groups of people with disabilities struggle with social exclusion in society. People with leprosy-related disabilities, in particular, live below the poverty line of US$ 0.5 per day. Most of the participants lived in rural areas. Participants raised the need for enhanced self-esteem and help in finding jobs. To overcome the difficulty in finding employment, they felt vocational training and microcredit to start businesses, were required.  

 

Conclusions: The study found that both groups of people with disabilities have similar needs to improve participation in social and economic life. Rehabilitation centres provide vocational training and microcredit. Self-help groups have also proven effective in reaching poor people with disabilities in rural areas and improving social participation. The authors suggest that it is best to form multi-disability self-help groups to empower all the affected people and help fight poverty. 

 

 

Disability, CBR & Inclusive Development Journal, Vol 25, No 3

Lessons learned on inclusion of people with disability in the ICCO Gaibandha food security project for ultra poor women, 2009-2013

BRUIJN, Paulien
October 2013

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The Gaibandha Food Security Program is one of the first programs that mainstreams disability on a large scale, and the Food Security Project in Gaibandha was implemented in order to improve the food security situation of 40.000 women headed households. In April 2013 an internal evaluation took place on the disability mainstreaming process within the FSUP Gaibandha project. This report reflects related lessons learned about disability mainstreaming

Leprosy: Knowledge and Attitudes of Physiotherapists in Nigeria

AYANNIYI, O
DUNCAN, F O
ADENIYI, A F
2013

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Purpose: The objectives of this study were to investigate the knowledge and attitudes towards leprosy of physiotherapists in Nigeria.

 

Method: A cross-sectional survey of 330 physiotherapists, with minimum 1-year work experience in public hospitals in the 6 geo-political zones of Nigeria, was carried out. A pre-tested, self-administered questionnaire with open and close- ended questions was employed. Data obtained were analysed using descriptive and inferential statistics of Chi-square tests with Alpha level at 0.05.

 

Results: The respondents’ mean and range of years of job experience was 8.6 + 5.51 and 1 to 27 years respectively. Close to half (44.5%) of the physiotherapists had only a fair knowledge about leprosy and 165 (50%) had poor attitudes towards leprosy and persons with leprosy. There were significant associations between the schools of training and each level of knowledge (χ2 = 45.04; p = 0.0001) and attitudes of physiotherapists to leprosy and to persons who have suffered from leprosy (χ2 = 20.26; p = 0.009). There was, however, no significant association between years of job experience and each of knowledge (χ2 = 4.76; p = 0. 312), or attitudes of the physiotherapists to leprosy (χ2 = 4.55; p = 0.337).

 

Conclusions and Implications: It was concluded that a substantial number of physiotherapists in Nigeria had fair knowledge but poor attitudes towards leprosy. The institution of training appears to have an influence on their knowledge and attitudes. It is therefore recommended that educational and training programmes on leprosy should be organised and emphasised at the basic training institutions for physiotherapists.

Knowledge, Beliefs and Perception of Leprosy

SINGH, S
SINHA, A K
BANERJEE, B
JASWAL, N
2013

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Purpose: For intervention to be effective, it is essential that the knowledge, beliefs and perception of a specific social group are taken into account. This is particularly true of leprosy where the problems of social stigma and ostracism are more prominent than the disease itself. There are many misconceptions about the cause, methods of transmission, and treatment.

 

The main objectives of the study were to examine the socio-demographic profile of persons with leprosy and to explore their knowledge, beliefs and perception about the disease and its initial symptoms, within a specific socio-cultural milieu.

 

Method: Semi-structured interviews were held with a persons with leprosy at various clinics and care-homes for affected persons in and around Chandigarh, India. Those who had completed their treatment and those who were still undergoing treatment were included in the study. Data collection was done through case studies and in-depth interviews.

 

Results: The name of the disease varied across different geo-cultural zones. Many respondents who were afflicted with only red patches and had no ulcers, believed that they suffered from a skin disease which would turn into leprosy if proper medication was not received. The perception of 64.9 % of the respondents was that leprosy resulted from supernatural causes like God’s punishment, karma, and sin.

 

Conclusion: There is a need to educate persons with leprosy and their families about the etiology of the disease.

Disability in people affected by leprosy : the role of impairment, activity, social participation, stigma and discrimination

VAN BRAKEL, W. H.
et al
2012

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"Leprosy-related disability is a challenge to public health, and social and rehabilitation services in endemic countries. Disability is more than a mere physical dysfunction, and includes activity limitations, stigma, discrimination, and social participation restrictions." This paper assesses the extent of disability and its determinants among persons with leprosy-related disabilities after release from multi drug treatment
Global Health Action, Vol 5

Developing intervention strategies to improve community health worker motivation and performance

FRANK, Tine
KALLANDER, Karin
2012

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"This 28-page learning paper describes Malaria Consortium’s experience with Integrated Community Case Management (ICCM) in malaria prevention and treatment in Mozambique and Uganda. ICCM is an approach where community-based health workers are trained to identify, treat, and refer complex cases malaria (and other diseases) in children"
The Learning Series Papers

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.

 

Guidelines to reduce stigma : guide 1|What is health-related stigma?

VAN BRAKEL, Wim
et al
2011

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"This guide is part of a series of four Guides to reduce stigma. The guides are for all managers, health and social workers and service staff who have to deal with stigma in leprosy and other health conditions. These Guides provide evidence-based and best-practice information from different disciplines, and recommendations for field workers on how to reduce stigma against and among affected persons and in the community. This first Guide provides basic information on stigma, its causes, manifestations, and effects"

Guidelines to reduce stigma : guide 2|How to assess health-related stigma

VOOREND, Carlijn
et al
2011

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"This guide is part of a series of four Guides to reduce stigma. The guides are for all managers, health and social workers and service staff who have to deal with stigma in leprosy and other health conditions. These Guides provide evidence-based and best-practice information from different disciplines, and recommendations for field workers on how to reduce stigma against and among affected persons and in the community...The second Guide describes when and how to assess stigma using qualitative and quantitative methods and instruments. It also explains how to use the instruments"

Guidelines to reduce stigma : guide 3|A roadmap to stigma reduction : an empowerment intervention

CROSS, Hugh
et al
2011

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"This guide is part of a series of four Guides to reduce stigma. The guides are for all managers, health and social workers and service staff who have to deal with stigma in leprosy and other health conditions. These Guides provide evidence-based and best-practice information from different disciplines, and recommendations for field workers on how to reduce stigma against and among affected persons and in the community...The third Guide provides recommendations on how to develop an approach for reducing stigma. Through the use of a roadmap, several steps are discussed for reducing stigma related to a particular health condition"

Guidelines to reduce stigma : guide 4|Counseling to reduce stigma

AUGUSTINE, Valsa
et al
2011

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"This guide is part of a series of four Guides to reduce stigma. The guides are for all managers, health and social workers and service staff who have to deal with stigma in leprosy and other health conditions. These Guides provide evidence-based and best-practice information from different disciplines, and recommendations for field workers on how to reduce stigma against and among affected persons and in the community...The fourth guide explains the use of counselling at a basic level in dealing with stigma. It provides an explanation on different techniques and approaches for counselling persons affected by stigma"

Lessons from the evolution of a CBR programme for people affected by leprosy in Northern Nigeria

EBENSO, Bassey
et al
December 2010

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"This paper reviews the 13-year evolution of the social economic activities in Northern Nigeria from a welfare-oriented to a community-centred programme for people affected by leprosy...Findings revealed that the transformation among other things, demanded formulation of new programme policies and guidelines; and staff training in CBR principles and practice. Findings also showed that adopting CBR principles and community development projects can stimulate improvements in living conditions,self-esteem and acceptance of people affected by leprosy into the community"
Leprosy Review Journal, Vol 81

Review of leprosy research evidence (2002-2009) and implications for current policy and practice

VAN BRAKEL, Wim
et al
September 2010

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"The ILEP Technical Commission (ITC) advises ILEP member associations on technical aspects of leprosy. A major review of research evidence in leprosy was published prior to the International Leprosy Congress in 2002. This current report updates that review based on research published between 2002-2009 and focuses on interventions for prevention, early diagnosis, chemotherapy, reactions, prevention of disability, stigma measurement and reduction and rehabilitation in leprosy"
Leprosy Review, Vol 81, Issue 3

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