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Activity Limitation of People Affected by Leprosy in an Endemic District in West Bengal, India

Govindharaj, Pitchaimani
Srinivasan, Sampathkumar
Darlong, Joydeepa
2020

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Purpose: This study aimed to assess the level of activity limitation, and the factors associated with it, among people affected by leprosy who were reporting at a leprosy referral centre of Purulia, in West Bengal state, India.

 

Method: A cross-sectional study was conducted among 358 individuals affected by leprosy. Persons recruited for this study were above 18 years of age, married, and had been diagnosed with leprosy for at least 1 year at the time of the interview. A semi-structured questionnaire was used to gather information about the respondents’ socio-economic and disease status. The Screening of Activity Limitation and Safety Awareness (SALSA) Scale was used to measure activity limitation.

 

Results: Of the 358 respondents, 59% were male, 60% were between 18 and 45 years of age, and 42% were illiterate. About 144 or 40% of the respondents had Grade 2 disability and 60% had disease duration of more than 3 years. There were 229 individuals (64%) who had no limitation in activities, 103 (29%) had mild limitation and 26 (7%) had moderate to severe limitation in activities. There is a significant association between gender, age, occupation, physical disability and disease duration with activity limitation.

 

Conclusion: It appears that limitations in activities among persons affected by leprosy are associated with being a woman, ahousewife, an aged person, and with longer disease duration. The physical disability was intrinsically associated with limitation in activities.

Disclosure of Disease among Women affected by Leprosy: A Qualitative Study

Ramasamy, Senthilkumar
Govindharaj, Pitchaimani
Kumar, Archana
Panneerselvam, Suganya
2020

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Purpose: Although leprosy is completely curable with multidrug therapy, it is unfortunate that the stigma attached to leprosy persists even today. Fear of social exclusion prevents disclosure of the disease to the family and community. This study aimed to evaluate the extent of disclosure of disease among women affected by leprosy in a tertiary referral hospital in Chhattisgarh State, India.

 

Method: A qualitative study was conducted with 57 women affected by leprosy who reported at a tertiary referral hospital in Champa, Chhattisgarh State. The respondents were 18 years of age or older, and had completed multidrug therapy for leprosy. They were asked whether the disclosure of disease had affected their interactions with family, neighbours and community members.

 

Results: Of the 57 women, 48 (84%) had disclosed their disease to their family, 17 (30%) to their neighbours and 13 (23%) to the community members. Thirty women (53%) reported that they experienced problems after revealing the ailment to their family, friends and neighbours. The qualitative analysis found that negative behaviour towards people affected by leprosy still persists in the community. Consequently, women affected by leprosy try to hide their disease due to fear of negative community reactions.

 

Conclusion: This study emphasises the need to spread awareness about the disease and its transmission, by educating the people affected by leprosy, their families and the community. This should be a continuous process in order to reduce or remove the stigma and discrimination against women affected by leprosy, in particular.

User Satisfaction with Conventional Lower-Limb Orthotic Devices: a Cross-Sectional Survey in Pakistan

Aftab, Zohaib
Zaidi, Zohaib Ahmed
Shafi, Faraz
2020

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Purpose: Persons with disabilities affecting lower-limb function use ankle- foot-orthoses (AFO) and knee-ankle-foot-orthoses (KAFO) on a regular basis. However, the effectiveness of these devices in daily use is seldom evaluated, especially in the developing world. This study aimed to evaluate user satisfaction with lower-limb orthotic devices while performing a broad spectrum of daily life activities in Pakistan, and to document the desired outcomes.

 

Method: A survey was conducted among orthotic device users in the out-patient departments of three hospitals in Lahore, Pakistan. The survey questionnaire was devised by adapting the Prosthetic Evaluation Questionnaire to suit orthotics evaluation. Fifty-four AFO and KAFO users participated in the study.

 

Results: Most users felt comfortable while walking on even surfaces with their orthoses. However, donning/doffing these, climbing stairs and performing certain routine activities were considered problematic for most people. Energy conservation was the most desired AFO feature, while the KAFO users wanted automatic knee-joint function.

 

Conclusion and Implications: Overall satisfaction with the existing lower- limb orthoses is adequate. Yet, significant improvements are needed in terms of energy efficiency and comfort while walking on different terrains. Further research is required in order to improve the functioning of the existing orthotic devices.

What do we know about how to support mental health and wellbeing during the COVID-19 pandemic from past infectious disease epidemics?

QURESH, Onaiza
SCHERER, Nathaniel
July 2020

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The question and the problem:

Symptoms of mental ill-health are common during widespread outbreak of an infectious disease, with high rates of depression, anxiety and post-traumatic stress disorder (PTSD) reported during recent epidemics, such as the recent Ebola crises and SARS-CoV-1. Elevated symptoms of mental ill-health are not limited to patients only, and are seen in healthcare workers, family members and indeed more widely across the general population. Early evidence coming from the COVID-19 pandemic demonstrates high rates of mental ill-health and mental health service provision is needed. This evidence brief summarises evidence on mental health support during COVID-19 and other recent pandemics, informing policy and practice during this crisis.

Guidance for including people with disabilities in responses to the COVID-19 pandemic. Guidance for development partners

PREGEL, Andrea
LE FANU, Guy
May 2020

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Practical guidance is provided for development partners to develop disability inclusive responses to the COVID-19 pandemic during the emergency phase of the COVID19 pandemic. In the immediate- and long-term response to the pandemic, it is vital that all development partners take steps to strengthen health systems that are disability-inclusive.

 

Topics include: intersectionality; assessing gaps and needs; engaging people with disabilities and DPO's; accessible and inclusive communications; healthcare and essential services; livelihoods and social protection; education; independent living and housing; and evidence generation.

COVID-19 response: Considerations for children and adults with disabilities

UNICEF
April 2020

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A guidance note on considerations for children and adults with disabilities in the COVID-19 response. The guidance describes what we need to know about the situation of persons with disabilities in COVID-19 response, and what we need to do in five key points: Limit human to human transmission and protect individuals from exposure; minimise morbidity and mortality; prevent and address the secondary impact of the outbreak- minimise the human consequences of the outbreak; enhance risk reduction and in-country preparedness including coordination; inclusion in UNICEF operations

How to Cope With Being Short Of Breath

April 2020

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People with lung problems often feel short of breath. Many daily tasks can make you breathless, such as walking, getting dressed or doing jobs around the house. Being breathless can make you panic or feel frightened. When you learn how to control your breathing these feelings will not trouble you as much and you will be able to do more. When you are breathless, do not panic. Your breathing will settle.
 

Advice about leprosy and COVID-19

ILEP TECHNICAL COMMISSION (ITC)
April 2020

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Brief advice is given in relation to COVID-19 concerning general issues, diagnosis and clinical management of leprosy patients, public health aspects of leprosy in the COVID-19 pandemic and services for persons living with disabilities and/or psychosocial consequences of leprosy

COVID19 Resource Key advocacy messages, questions to ask on inclusion and signpost to resources to learn more

Dr. Werner-Freybergstr
March 2020

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The COVID pandemic continues to escalate across the world, this document has been prepared to;

  • Provide some top-line advocacy messages that can be used for advocacy and communications,
  • Give a few questions example that you can ask yourself/or other stakeholders to check how people with disabilities are being included,
  • Provide key resources for further reading. We recognise the importance of safe, evidence-based messages, and stand by the advice of the World Health Organisation on health-related issues, of the Inter-Agency Standing Committee on international coordination, and of the International Disability Alliance on inclusion of people with disabilities in the COVID-19 response. 

COVID-19 RESPONSE A unique expertise to fight the virus

HUMANITY & INCLUSION (HI)
March 2020

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Humanity & Inclusion’s teams are assessing its scope for action and plans to use its expertise in emergency situations, working with and for people with disabilities and older people, and its experience of past epidemic situations to protect the most vulnerable. HI has experience in major epidemics of ebola and cholera.

 

HI published a repository of resources on disability inclusion and COVID-19 as a member of the International Disability and Development Consortium (IDDC) and the CORE Group Disability Inclusive Health Technical Advisory Group

Investigation of physical and functional impairments experienced by people with active tuberculosis infection: A feasibility pilot study

Van ASWEGEN, Heleen
ROOS, Ronel
McCREE, Melanie
QUINN, Samantha
MER, Mervyn
August 2019

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Background: Tuberculosis (TB) remains a significant healthcare problem. Understanding physical and functional impairments that patients with active TB present with at the time of diagnosis and how these impairments change over time while they receive anti-TB therapy is important in developing appropriate rehabilitation programmes to optimise patients’ recovery.

 

Objectives: The aim of this study was to assess the acceptability, implementation and practicality of conducting a prospective, observational and longitudinal trial to describe physical and functional impairments of patients with active TB.

 

Method: A feasibility pilot study was performed. Patients with acute pulmonary TB admitted to an urban quaternary-level hospital were recruited. Physical (muscle architecture, mass and power, balance, and breathlessness) and functional (exercise capacity) outcomes were assessed in hospital, and at 6 weeks and 6 months post-discharge. Descriptive statistics were used to analyse the data.

 

Results: High dropout (n = 5; 41.7%) and mortality (n = 4; 33.3%) rates were observed. Limitations identified regarding study feasibility included participant recruitment rate, equipment availability and suitability of outcome measures. Participants’ mean age was 31.5 (9.1) years and the majority were human immunodeficiency virus (HIV) positive (n = 9; 75%). Non-significant changes in muscle architecture and power were observed over 6 months. Balance impairment was highlighted when vision was removed during testing. Some improvements in 6-minute walk test distance were observed between hospitalisation and 6 months.

 

Conclusion: Success of a longitudinal observational trial is dependent on securing adequate funding to address limitations observed related to equipment availability, staffing levels, participant recruitment from additional study sites and participant follow-up at community level. Participants’ physical and functional recovery during anti-TB therapy seems to be limited by neuromusculoskeletal factors.

 

 

African Journal of Disability, Vol 8, 2019

Growing up with a disability following paralytic poliomyelitis: experiences from persons with late effects of polio

SJODAHL HAMMARLUND, Catharina
LEXELL, Jan
BROGARDH, Christina
August 2019

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Purpose: To describe the experiences of growing up after acute paralytic poliomyelitis and strategies used to adapt to the new situation.

 

Methods: Seven women and seven men (mean age 70 years, min–max 61–78 years) with late effects of polio, who had contracted paralytic polio in their childhood. Data were collected using semi-structured interviews, transcribed verbatim, and analyzed by systematic text condensation.

 

Results: Memories of contracting acute paralytic poliomyelitis involved being immobilized and sent away from home for surgical and physiotherapeutic treatment. Growing up in a social context that was often tough and unfriendly resulted in the development of strategies, such as optimistic thinking, trying to blend in, trusting one’s ability to manage, and to handle the preconceptions and expectations of others. At the onset of late effects of polio, some of these strategies were still functioning, whereas overachieving, disregarding pain, and weariness were not.

 

Conclusion: The challenges of growing up with a disability following paralytic polio led to the development of various psychological strategies for managing daily life. By understanding these experiences and strategies, knowledge may be gained in assisting rehabilitation professionals to better support persons with late effects of polio in adapting to the new situation.

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.

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.

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.

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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