Top

Published in:

Open Access 01-12-2018 | Research article

Assessing the feasibility of integration of self-care for filarial lymphoedema into existing community leprosy self-help groups in Nepal

Authors: Joseph Pryce, Hayley E. Mableson, Ramesh Choudhary, Basu Dev Pandey, Dambar Aley, Hannah Betts, Charles D. Mackenzie, Louise A. Kelly-Hope, Hugh Cross

Published in: BMC Public Health | Issue 1/2018

Abstract

Background

Lymphatic filariasis (LF) and leprosy are disabling infectious diseases endemic in Nepal. LF infection can lead to lymphoedema and hydrocoele, while secondary effects of leprosy infection include impairments to hands, eyes and feet. The disabling effects of both conditions can be managed through self-care and the supportive effects of self-help groups (SHGs). A network of SHGs exists for people affected by leprosy in four districts in Nepal’s Central Development Region, however no such service exists for people affected by LF. The aim of this study was to determine the feasibility of integrating LF affected people into existing leprosy SHGs in this area.

Methods

A survey was conducted using a semi-structured questionnaire to elicit information on: (i) participant characteristics, clinical manifestation and disease burden; (ii) participants’ knowledge of management of their condition and access to services; and (iii) participants’ knowledge and perceptions of the alternate condition (LF affected participants’ knowledge of leprosy and vice versa) and attitudes towards integration.

Results

A total of 52 LF affected and 53 leprosy affected participants were interviewed from 14 SHGs. On average, leprosy affected participants were shown to have 1.8 times greater knowledge of self-care techniques, and practiced 2.5 times more frequently than LF affected participants. Only a quarter of LF affected participants had accessed a health service for their condition, compared with 94.3% of leprosy affected people accessing a service (including SHGs), at least once a week. High levels of stigma were perceived by both groups towards the alternate condition, however, the majority of LF (79%) and leprosy (94.3%) affected participants stated that they would consider attending an integrated SHG.

Conclusions

LF affected participants need to increase their knowledge of self-care and access to health services. Despite stigma being a potential barrier, attitudes towards integration were positive, suggesting that the SHGs may be a good platform for LF affected people to start self-care in this area.

Trial registration

This is not a registered trial.

WHO. Global programme to eliminate lymphatic filariasis: progress report, 2015. Wkly Epidemiol Rec. 2016;91:441–60. Available from: http://www.who.int/wer/2016/wer9139/en/.

Suma TK, Shenoy RK, Kumaraswami V. A qualitative study of the perceptions, practices and socio-psychological suffering related to chronic brugian filariasis in Kerala, southern India. Ann Trop Med Parasitol. 2003;97:839–45. Available from:http://www.tandfonline.com/doi/full/10.1179/000349803225002435

Martindale S, Mkwanda SZ, Smith E, Molyneux D, Stanton MC, Kelly-Hope LA. Quantifying the physical and socio-economic burden of filarial lymphoedema in Chikwawa District, Malawi. Trans R Soc Trop Med Hyg. 2014;108:759–67. Available from: http://www.ncbi.nlm.nih.gov/pubmed/25270880.

Babu B V, Mishra S, Nayak AN, Michael E, Bundy D, Grenfell B, et al. Marriage, Sex, and Hydrocele: An Ethnographic Study on the Effect of Filarial Hydrocele on Conjugal Life and Marriageability from Orissa, India. PLoS Negl. Trop. Dis. 2009;3:e414. Available from: http://dx.plos.org/10.1371/journal.pntd.0000414

Zeldenryk LM, Gray M, Speare R, Gordon S. Melrose W. The emerging story of disability associated with lymphatic filariasis: a critical review. PLoS Negl Trop Dis. 2011;5:e1366. Available from:http://www.ncbi.nlm.nih.gov/pubmed/22216361

Stanton MC, Smith EL, Martindale S, Mkwanda SZ, Kelly-Hope LA. Exploring hydrocoele surgery accessibility and impact in a lymphatic filariasis endemic area of southern Malawi. Trans R Soc Trop Med Hyg. 2015;109:252–61. Oxford University Press. Available from: https://academic.oup.com/trstmh/article-lookup/doi/10.1093/trstmh/trv009.

Gyapong M, Gyapong J, Weiss M, Tanner M. The burden of hydrocele on men in northern Ghana. Acta Trop. 2000;77:287–94. Available from: http://linkinghub.elsevier.com/retrieve/pii/S0001706X00001455.

Bryceson A, Pfaltzgraff RE (Roy E. Leprosy. Churchill Livingstone); 1990.

Talhari S, de Grossi MAF, de Oliveira MLW, Gontijo B, Talhari C, Penna GO. Hansen’s disease: a vanishing disease? Mem Inst Oswaldo Cruz. 2012;107:13–6. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0074-02762012000900003&lng=en&nrm=iso&tlng=en.

10.

WHO. Global leprosy situation, 2005. Wkly Epidemiol Rec. 2005;80:289–96.

11.

WHO. Global leprosy update, 2015: time for action, accountability and inclusion. Wkly Epidemiol Rec. 2016;91:405–20. Available from: http://www.who.int/lep/resources/who_wer9135/en/.

12.

Coreil J, Mayard G, Louis-Charles J, Addiss D. Filarial elephantiasis among Haitian women: social context and behavioural factors in treatment. Trop Med Int Health. 1998;3:467–73. Available from: https://www.ncbi.nlm.nih.gov/pubmed/9657509.

13.

Wynd S, Melrose WD, Durrheim DN, Carron J, Gyapong M. Understanding the community impact of lymphatic filariasis: a review of the sociocultural literature. Bull World Health Organ. 2007;85:421–500. Available from: http://www.who.int/bulletin/volumes/85/6/06-031047/en/.

14.

van’t Noordende AT, van Brakel WH, Banstola N, Dhakal KP, Dhakal KP. The impact of leprosy on marital relationships and sexual health among married women in eastern Nepal. J Trop Med. 2016;2016:1–9. Available from: http://www.hindawi.com/journals/jtm/2016/4230235/.

15.

WHO. Morbidity management and disability prevention in lymphatic filariasis. India: World Health Organization, Regional Office for South East Asia; 2013.

16.

WHO. Global Programme to eliminate lymphatic Filariasis: managing morbidity and preventing disability. World Health Organ 2013;13:1–69. Available from: http://www.who.int/lymphatic_filariasis/resources/9789241505291/en/.

17.

WHO. Enhanced global strategy for further reducing the disease burden due to leprosy. 2009.

18.

WHO. Global leprosy strategy 2016–2020: accelerating towards a leprosy-free world – 2016 operational manual. 2016.

19.

Deepak S. Answering the rehabilitation needs of leprosy-affected persons in integrated setting through primary health care services and community-based rehabilitation. Indian J Lepr 2003; 75:127–42. Available from: http://www.ncbi.nlm.nih.gov/pubmed/15255400.

20.

Cross H, Choudhary R. STEP: an intervention to address the issue of stigma related to leprosy in southern Nepal. Lepr Rev. 2005;76:316–24. Available from: http://www.ncbi.nlm.nih.gov/pubmed/16411511].

21.

Cross H, Kumar Sah A. The experiences and attitudes of people affected by leprosy who voluntarily undertake leprosy services in Nepal. Lepr Rev. 2014;85:224–31. Available from: http://www.ncbi.nlm.nih.gov/pubmed/25509724.

22.

Cassidy T, Worrell CM, Little K, Prakash A, Patra I, Rout J, et al. Experiences of a community-based Lymphedema management program for lymphatic Filariasis in Odisha state, India: an analysis of focus group discussions with patients, families, community members and program volunteers. PLoS Negl Trop Dis. 2016;10:e0004424. Available from: http://www.ncbi.nlm.nih.gov/pubmed/26849126.

23.

Budge PJ, Little KM, Mues KE, Kennedy ED, Prakash A, Rout J, et al.. Impact of community-based Lymphedema management on perceived disability among patients with lymphatic Filariasis in Orissa state, India, PLoS Negl. Trop. Dis, 7; 2013. p. e2100. Available from: http://dx.plos.org/10.1371/journal.pntd.0002100.

24.

Mues KE, Deming M, Kleinbaum DG, Budge PJ, Klein M, Leon JS, et al. Impact of a community-based Lymphedema management program on episodes of Adenolymphangitis (ADLA) and Lymphedema progression - Odisha state, India, PLoS Negl. Trop. Dis. 2014; 8. e3140. Available from: http://dx.plos.org/10.1371/journal.pntd.0003140.

25.

Stanton MC, Best A, Cliffe M, Kelly-Hope L, Biritwum N-K, Batsa L, et al. Situational analysis of lymphatic filariasis morbidity in Ahanta West District of Ghana. Trop Med Int Health. 2016;21:236–44. Available from: http://www.ncbi.nlm.nih.gov/pubmed/26584839.

26.

Peters RMH, Dadun, Van Brakel WH, Zweekhorst MBM, Damayanti R, Bunders JFG, et al. The Cultural Validation of Two Scales to Assess Social Stigma in Leprosy. PLoS Negl Trop Dis. 2014;8:e3274. https://doi.org/10.1371/journal.pntd.0003274.

27.

Adhikari RK, Sherchand JB, Mishra SR, Ranabhat K, Pokharel A, Devkota P, et al. Health-seeking behaviors and self-care practices of people with filarial lymphoedema in Nepal: a qualitative study. J Trop Med. 2015;2015:260359. Available from: http://www.ncbi.nlm.nih.gov/pubmed/25694785.

28.

Cross H, Choudhury R. Self care: a catalyst for community development. Asia Pac Disabil Rehabil J. 2005;16:100–114. Available from: http://english.aifo.it/disability/apdrj/apdrj205/selfcare.pdf.

29.

Stanton MC, Mkwanda SZ, Debrah AY, Batsa L, Biritwum N-K, Hoerauf A, et al. Developing a community-led SMS reporting tool for the rapid assessment of lymphatic filariasis morbidity burden: case studies from Malawi and Ghana. BMC Infect Dis. 2015;15:214. Available from: http://www.biomedcentral.com/1471-2334/15/214.

30.

Perera M, Whitehead M, Molyneux D, Weerasooriya M, Gunatilleke G. Neglected patients with a neglected disease? A qualitative study of lymphatic filariasis. PLoS Negl Trop Dis. 2007;1:e128. Available from: http://www.ncbi.nlm.nih.gov/pubmed/18060080.

31.

Sermrittirong S, Van Brakel WH, Kraipui N, Traithip S, Bunders-Aelen JF. Comparing the perception of community members towards leprosy and tuberculosis stigmatization. Lepr Rev. 2015;86:54–61. Available from: https://www.ncbi.nlm.nih.gov/pubmed/26065147.

32.

Dreyer G, Mattos D. Perspectives of Elephantiasis in an endemic area of Brazil. J Lymphoedema. 2007;2:24–31.

33.

Person B, Bartholomew LK, Addiss D, van den Borne B. Disrupted social connectedness among Dominican women with chronic filarial lymphedema. Patient Educ Couns. 2007;68:279–86. Available from: http://www.ncbi.nlm.nih.gov/pubmed/17707609.

34.

Person B, Kay Bartholomew L, Gyapong M, Addiss DG, Van Den Borne B. Health-related stigma among women with lymphatic filariasis from the Dominican Republic and Ghana. Soc Sci Med. 2001;68:30–8.CrossRef

35.

Bandyopadhyay L. Lymphatic filariasis and the women of India. Soc Sci Med. 1996;42:1401–10. Available from: http://www.ncbi.nlm.nih.gov/pubmed/8735896.

36.

Kumari AK, Harichandrakumar KT, Das LK, Krishnamoorthy K. Physical and psychosocial burden due to lymphatic filariasis as perceived by patients and medical experts. Trop Med Int Health. 2005;10:567–73.CrossRef

37.

Ahorlu CK, Dunyo SK, Koram KA, Nkrumah FK, Aagaard-Hansen J, Simonsen PE. Lymphatic filariasis related perceptions and practices on the coast of Ghana: implications for prevention and control. Acta Trop. 1999;73:251–64. Available from: www.elsevier.com/locate/actatropica.

38.

Adhikari B, Kaehler N, Chapman RS, Raut S, Roche P. Factors affecting perceived stigma in leprosy affected persons in western Nepal. PLoS Negl Trop Dis. 2014;8:e2940.CrossRefPubMedPubMedCentral

39.

Heijnders ML. The dynamics of stigma in leprosy. Int J Lepr. 2004;72:437–47.

40.

Wijesinghe RS, Wickremasinghe AR, Ekanayake S, MSA P. Physical disability and psychosocial impact due to chronic filarial lymphoedema in Sri Lanka. Filaria J. 2007;6:4. Available from: http://www.ncbi.nlm.nih.gov/pubmed/17391538.

41.

Scott J. The psychosocial needs of leprosy patients. Lepr Rev. 2000;71:486–49.PubMed

42.

Try L. Gendered experiences: marriage and the stigma of leprosy. Asia Pac Disabil Rehabil J. 2006;55

43.

Ton TGN, Mackenzie C, Molyneux DH. The burden of mental health in lymphatic filariasis. Infect Dis Poverty. 2015;4:34. Available from: http://www.ncbi.nlm.nih.gov/pubmed/26229599.

Title: Assessing the feasibility of integration of self-care for filarial lymphoedema into existing community leprosy self-help groups in Nepal
Authors: Joseph Pryce
Hayley E. Mableson
Ramesh Choudhary
Basu Dev Pandey
Dambar Aley
Hannah Betts
Charles D. Mackenzie
Louise A. Kelly-Hope
Hugh Cross
Publication date: 01-12-2018
Publisher: BioMed Central
Published in: BMC Public Health / Issue 1/2018
Electronic ISSN: 1471-2458
DOI: https://doi.org/10.1186/s12889-018-5099-0

Keynote webinar | Spotlight on sleep in brain health

Springer Medicine

Assessing the feasibility of integration of self-care for filarial lymphoedema into existing community leprosy self-help groups in Nepal

Abstract

Background

Methods

Results

Conclusions

Trial registration

Keynote webinar | Spotlight on sleep in brain health

Springer Medicine

Abstract

Background

Methods

Results

Conclusions

Trial registration

Please log in to get access to this content

Other articles of this Issue 1/2018

Cluster-randomised trial on participatory community-based outdoor physical activity promotion programs in adults aged 65–75 years in Germany: protocol of the OUTDOOR ACTIVE intervention trial

Association between body mass index and health outcomes among adolescents: the mediating role of traditional and cyber bullying victimization

Simple and rationale-providing SMS reminders to promote accelerometer use: a within-trial randomised trial comparing persuasive messages

The English National Cohort Study of Flooding and Health: the change in the prevalence of psychological morbidity at year two

A qualitative analysis exploring preferred methods of peer support to encourage adherence to a Mediterranean diet in a Northern European population at high risk of cardiovascular disease

‘You don’t throw these things out:’ an exploration of medicines retention and disposal practices in Australian homes