The impact of family-based approaches aimed at prevention and sustainable selfmanagement of disabilities on persons affected by lymphatic filariasis (LF) and podoconiosis and their family members in the Amhara region, Ethiopia. A mixed methods study

Samenvatting

Introduction

Lymphatic filariasis (LF) and podoconiosis are disabling neglected tropical diseases (NTDs) in Ethiopia and can have multiple consequences. People can experience stigma, decreased individual and Family Quality of Life (FQoL), and there are social and economic consequences such as social exclusion and loss of income. Therefore, an intervention aiming to support persons affected by LF and podoconiosis and their families was implemented in the Zigem area in Ethiopia. Before implementing the intervention, the current situation has been assessed by measuring, among others, the FQoL of the participating persons affected and their families. The impact of the intervention was not assessed yet, indicating a knowledge gap. The objective of this study is to evaluate the short-term impact of the family-based intervention in the Zigem area, Ethiopia on persons affected by LF and podoconiosis and their families by analyzing the baseline FQoL and FQoL data from an initial follow-up study. These results can be used to optimize the last phase of this intervention or to improve the intervention in other areas at a later stage.

Contextual background

The intervention consists of three pillars and involves persons affected, their family members and the community. The first pillar, awareness creation, is done through educationalsessions, providing general information about the NTDs. These sessions are provided outdoors, thereby increasing the visibility of NTDs in the Zigem community. Disease management is the second pillar and concerns the medical part of the intervention such as learning how to treat wounds, and how to take care of others and yourself. The third pillar is socio-economic support where products such as bandages, Vaseline and jerrycans are handed out. Moreover, an income-generating association is created. This does not only create income but also creates jobs. The intervention is not completed: shoes, socks, and stoves are planned to provide in a later stage.

Theoretical framework

The FQoL framework of Beach Center on Disabilities (2006) was used to assess the impact of the intervention. The FQoL framework consists of five domains: 1) family interaction, assessing the relationships among family members, 2) parenting, focusing on the role of the caregiver in the family, 3) emotional wellbeing, looking at the emotional needs, 4) physical/material wellbeing, concerning the basic physical and material needs, and 5) disability-related support, evaluating the support families receive. These domains are assessed by 25 items with a Likert scale. Additionally, open questions are added to explore the needs and opinion of the participants more in-depth.

Methods

The study population was selected by means of an opportunity sample drawn from community members in the Zigem area. Eligibility criteria were; an age of 18 years and older, the person is affected by LF and/or podoconiosis or is a family member of a person affected, is living in the Amhara region, and participated in the intervention. This study used a mixed methods approach. Quantitative baseline data was obtained from the FQoL survey (n=119). Follow-up data was both quantitative and qualitative, with the same survey, combined with open questions (n=40). These two samples were partially overlapping. Moreover, an expert interview was conducted with the main researcher of the entire project to take into account possible cultural sensitivity of the results. Independent samples t-tests and one sample t-tests were conducted in SPSS to analyze the quantitative data. The qualitative data was open coded. Principal component analyses were used to assess the reliability of the FQoL framework.

Results

The majority of the study population was female and related to podoconiosis. Comparing persons affected and family members, 11 out of 25 items showed significant differences in scores in the baseline data. In the follow-up data, 1 out of 25 items showed significant differences. In all these differences, persons affected scored higher. Overall, persons affected had a higher FQoL during the follow-up, but family members improved their FQoL most. The domain family interaction improved, but not significantly (p=.440). The support desired by persons affected from their family all related to the household, such as help with preparing food and chopping wood. The domain parenting improved very significantly (p<.001). An open question showed that children are the main caregivers in the family. The third domain, emotional wellbeing, decreased very significantly (p<.001). Participants mainly experience stress due to the health conditions of the persons affected and a lack of freedom. The domain physical/material wellbeing improved, but not significantly (p=.250). Participants mentioned that they mainly desire shoes and clothing. The mean scores of disability-related support improved. Participants were overall very positive about the intervention. They appreciate the products provided, the home visits and the follow-up appointments. Points of improvement relate to providing medication and financial support.

Discussion

The decrease in significant differences between the two respondent groups can imply that family members are now better able to understand the needs of the persons affected. Comparing the baseline and the follow-up data showed a decrease in emotional wellbeing. It is a possibility that participants better realize the severity of their disease, due to the information provided in this intervention. It stood out that mental health is not a big part of the project. This can be incorporated more by using, for example, the association to share feelings. Other recommendations to improve the intervention are, among others, to focus the project on supporting children as well; involve community and religious leaders and provide visual health education materials to the community to decrease stigma; hand out shoes and socks earlier in the project, and initiate a sewing project. Additional literature supports the findings of this study. The FQoL framework showed relatively low Cronbach’s α, indicating low correlation within the domains. Another limitation concerned the partially overlapping sample. Strengths were among others backforward translation and involvement of experienced people from Ethiopia in this project.

Conclusion and further research

Overall, participants perceived a higher FQoL after the intervention, than before. The FQoL perceived by family members improved more than the FQoL of persons affected. Further research should explore, among other issues, how to improve mental health for persons affected by NTDs and their family members. Additionally, further research should look at the possible negative effects of healthcare interventions on mental wellbeing. Moreover, it should be examined how to implement the recommendations, to improve the long-term impact of the intervention.

Doelstelling

The objective of this study is to evaluate the short-term impact of the family-based intervention in the Zigem area, Ethiopia on persons affected by LF and podoconiosis and their families by analyzing the baseline FQoL and FQoL data from an initial follow-up study. These results can be used to optimize the last phase of this intervention or to improve the intervention in other areas at a later stage.

Methode

The study population was selected by means of an opportunity sample drawn from community members in the Zigem area. Eligibility criteria were; an age of 18 years and older, the person is affected by LF and/or podoconiosis or is a family member of a person affected, is living in the Amhara region, and participated in the intervention. This study used a mixed methods approach. Quantitative baseline data was obtained from the FQoL survey (n=119). Follow-up data was both quantitative and qualitative, with the same survey, combined with open questions (n=40). These two samples were partially overlapping. Moreover, an expert interview was conducted with the main researcher of the entire project to take into account possible cultural sensitivity of the results. Independent samples t-tests and one sample t-tests were conducted in SPSS to analyze the quantitative data. The qualitative data was open coded. Principal component analyses were used to assess the reliability of the FQoL framework.

Resultaten

See also the tab 'Samenvatting'

Overall, participants perceived a higher FQoL after the intervention, than before. The FQoL perceived by family members improved more than the FQoL of persons affected.

 

Projectinformatie

Project period: February 2019 – June 2019

Research line
(Family) Quality of Life
Status
Afgerond
Year completed
2019

Personen

Researchers/ authors
Meike Troost
Researchers / project members

Meike Troost

People or organisations involved in the project

On-site supervisor: A.P. Schippers, PhD.

VU supervisor: M.M. Waltz, PhD.

Disability Studies in Nederland: Alice Schippers and Anna van 't Noordende

Athena Institute, Faculty of Science, VU University Amsterdam
Athena Science Shop

ENAPAL (Ethiopian National Association of Persons Affected by Leprosy)

Moges Wubie, assis. Professor in Tropical and Infectious disease, Ethiopia

 

Contact

Meike Troost
Email: meiketroost@gmail.com

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