Key Sources of Strength and Resilience for Persons Receiving Services for Hansen's Disease (leprosy) in Porto Velho, Brazil: What Can We Learn for Service Development?

Overview

Journal Int Health

Publisher Oxford University Press

Specialty Health Services

Date 2021 Feb 6

PMID 33547894

Citations 3

Authors

Anna T Vant Noordende

Zoica Bakirtzief da Silva Pereira

Pim Kuipers

Affiliations

Soon will be listed here.

Abstract

Background: Individuals affected by Hansen's disease (leprosy) often experience stigma and discrimination. Greater psychosocial resilience may enable people to deal with such discrimination. This study aimed to explore sources of strength and resilience for individuals affected by Hansen's disease in Brazil.

Methods: We used a cross-sectional study design with a qualitative approach. Semistructured focus groups were conducted. Analysis comprised thematic categorisation of transcripts.

Results: Thirty-one participants were included: 23 individuals affected by Hansen's disease and 8 healthcare providers. We found that while a few individuals affected were provided with formal psychological support in the early phases of their treatment, many noted the importance of providing such support at this time. Most participants described relationships with and social support from family members, friends and with others affected by Hansen's disease as their primary source of resilience. A key context for building resilience was through the peer-level sharing and engagement experienced in self-care and support groups. Participants also emphasised the importance of providing appropriate information about Hansen's disease and the importance of beliefs and spirituality.

Conclusions: Hansen's disease services should seek to build resilience in early treatment through counselling and during treatment and beyond by having people affected getting together. Across both settings supporting family and social relationships, providing accurate information and acknowledging spiritual beliefs are important.

Citing Articles

Community-based psychosocial support interventions to reduce stigma and improve mental health of people with infectious diseases: a scoping review.

Anindhita M, Haniifah M, Putri A, Karnasih A, Agiananda F, Yani F Infect Dis Poverty. 2024; 13(1):90.

PMID: 39623477 PMC: 11613911. DOI: 10.1186/s40249-024-01257-6.

Factors affecting treatment adherence among leprosy patients: Perceptions of healthcare providers.

Pepito V, Loreche A, Samontina R, Abdon S, Fuentes D, Saniel O Heliyon. 2023; 9(7):e17975.

PMID: 37501956 PMC: 10368771. DOI: 10.1016/j.heliyon.2023.e17975.

Strengthening individual and family resilience against leprosy-related discrimination: A pilot intervention study.

Vant Noordende A, Bakirtzief da Silva Pereira Z, Biswas P, Ilyas M, Krishnan V, Parasa J PLoS Negl Trop Dis. 2021; 15(4):e0009329.

PMID: 33798199 PMC: 8046345. DOI: 10.1371/journal.pntd.0009329.

References

van Brakel W, Sihombing B, Djarir H, Beise K, Kusumawardhani L, Yulihane R . Disability in people affected by leprosy: the role of impairment, activity, social participation, stigma and discrimination. Glob Health Action. 2012; 5. PMC: 3402069. DOI: 10.3402/gha.v5i0.18394. View

Thoits P . Mechanisms linking social ties and support to physical and mental health. J Health Soc Behav. 2011; 52(2):145-61. DOI: 10.1177/0022146510395592. View

Stevelink S, van Brakel W, Augustine V . Stigma and social participation in Southern India: differences and commonalities among persons affected by leprosy and persons living with HIV/AIDS. Psychol Health Med. 2011; 16(6):695-707. DOI: 10.1080/13548506.2011.555945. View

Pietrzak R, Johnson D, Goldstein M, Malley J, Rivers A, Morgan C . Psychosocial buffers of traumatic stress, depressive symptoms, and psychosocial difficulties in veterans of Operations Enduring Freedom and Iraqi Freedom: the role of resilience, unit support, and postdeployment social support. J Affect Disord. 2009; 120(1-3):188-92. DOI: 10.1016/j.jad.2009.04.015. View

Tsutsumi A, Izutsu T, Islam A, Maksuda A, Kato H, Wakai S . The quality of life, mental health, and perceived stigma of leprosy patients in Bangladesh. Soc Sci Med. 2007; 64(12):2443-53. DOI: 10.1016/j.socscimed.2007.02.014. View

Weiss M . Stigma and the social burden of neglected tropical diseases. PLoS Negl Trop Dis. 2008; 2(5):e237. PMC: 2359851. DOI: 10.1371/journal.pntd.0000237. View

Litt E, Baker M, Molyneux D . Neglected tropical diseases and mental health: a perspective on comorbidity. Trends Parasitol. 2012; 28(5):195-201. DOI: 10.1016/j.pt.2012.03.001. View

Cook J, Purdie-Vaughns V, Meyer I, Busch J . Intervening within and across levels: a multilevel approach to stigma and public health. Soc Sci Med. 2014; 103:101-109. DOI: 10.1016/j.socscimed.2013.09.023. View

Hofstraat K, van Brakel W . Social stigma towards neglected tropical diseases: a systematic review. Int Health. 2016; 8 Suppl 1:i53-70. DOI: 10.1093/inthealth/ihv071. View

10.

Connell J, Brazier J, OCathain A, Lloyd-Jones M, Paisley S . Quality of life of people with mental health problems: a synthesis of qualitative research. Health Qual Life Outcomes. 2012; 10:138. PMC: 3563466. DOI: 10.1186/1477-7525-10-138. View

11.

Thoits P . Stress, coping, and social support processes: where are we? What next?. J Health Soc Behav. 1995; Spec No:53-79. View

12.

Cross H, Choudhary R . STEP: an intervention to address the issue of stigma related to leprosy in Southern Nepal. Lepr Rev. 2006; 76(4):316-24. View

13.

Cross H . Interventions to address the stigma associated with leprosy: a perspective on the issues. Psychol Health Med. 2006; 11(3):367-73. DOI: 10.1080/13548500600595384. View

14.

Mead S, Hilton D, Curtis L . Peer support: a theoretical perspective. Psychiatr Rehabil J. 2002; 25(2):134-41. DOI: 10.1037/h0095032. View

15.

Deepak S, Hansine P, Braccini C . Self-care groups of leprosy-affected people in Mozambique. Lepr Rev. 2014; 84(4):283-91. View

16.

Benbow C, Tamiru T . The experience of self-care groups with people affected by leprosy: ALERT, Ethiopia. Lepr Rev. 2001; 72(3):311-21. DOI: 10.5935/0305-7518.20010038. View

17.

Hatzenbuehler M, Nolen-Hoeksema S, Dovidio J . How does stigma "get under the skin"?: the mediating role of emotion regulation. Psychol Sci. 2009; 20(10):1282-9. PMC: 3687354. DOI: 10.1111/j.1467-9280.2009.02441.x. View

18.

MacLeod S, Musich S, Hawkins K, Alsgaard K, Wicker E . The impact of resilience among older adults. Geriatr Nurs. 2016; 37(4):266-72. DOI: 10.1016/j.gerinurse.2016.02.014. View

19.

Cohen S . Psychosocial models of the role of social support in the etiology of physical disease. Health Psychol. 1988; 7(3):269-97. DOI: 10.1037//0278-6133.7.3.269. View

20.

Rafferty J . Curing the stigma of leprosy. Lepr Rev. 2005; 76(2):119-26. View