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| ORIGINAL ARTICLE |
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| Year : 2023 | Volume
: 19
| Issue : 1 | Page : 14-18 |
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Development of home-based care intervention module for filarial lymphedema patients
Divya Sethi1, Shyama Devi1, Manish Taywade2
1 College of Nursing, All India Institute of Medical Sciences, Bhubaneswar, India
2 Department of Community Medicine and Family Medicine, All India Institute of Medical Sciences, Bhubaneswar, Odisha, India
| Date of Submission | 22-Aug-2022 |
| Date of Decision | 01-Mar-2023 |
| Date of Acceptance | 04-Mar-2023 |
| Date of Web Publication | 28-Mar-2023 |
Correspondence Address:
Divya Sethi
All India Institute of Medical Sciences, Bhubaneswar, Odisha 751019
India
 Source of Support: None, Conflict of Interest: None
DOI: 10.4103/AMJM.AMJM_30_22
The study aims to describe the development and validation of an intervention module based on home-based care training for patients with filarial lymphedema. Qualitative and quantitative approaches were followed for the development of the intervention module. Initial steps involved the framing of the intervention module. Direct observation, interviews with patients, suggestions from five experts in community medicine, community health nursing, and plastic surgery department were conducted. The experts and patients for the discussion were chosen with the help of convenient sampling. The experts rated the usefulness and feasibility of the components on a scale of 1–5 (5 extremely helpful). The ingredients derived for the intervention module included washing and drying of limb, prevention, care of entry lesions, light oil massage, the exercise of limb, the elevation of the stem, wearing of appropriate footwear, and management of adenolymphangitis (ADL). The intervention included individual sessions with demonstration and return demonstration. The final version of the module was pilot tested among five patients and had been found to improve the quality of life. Home-based care training with low-cost interventions can improve patients’ quality of life. Keywords: Filariasis, home-based intervention, lymphedema, quality of life
How to cite this article:
Sethi D, Devi S, Taywade M. Development of home-based care intervention module for filarial lymphedema patients. Amrita J Med 2023;19:14-8 |
How to cite this URL:
Sethi D, Devi S, Taywade M. Development of home-based care intervention module for filarial lymphedema patients. Amrita J Med [serial online] 2023 [cited 2023 Jun 4];19:14-8. Available from: https://ajmonline.org.in/text.asp?2023/19/1/14/372705 |
| Introduction | |  |
Lymphatic filariasis is the second most common cause of physical disability.[1] The disease is mainly caused by Wuchereria bancrofti, Brugia malayi, and Brugia timori. Brugia malayi and timori constitute 10% of the disease, and 90% of the disease is caused by Wuchereria species. Anopheles and Aedes species of the mosquito are responsible for the transmission of Wuchereria worms and Mansonia. Anopheles and Aedes species mosquitoes are responsible for the transmission of Brugia worms. The manifestations of the disease can be painful and disfiguring leading to permanent disability in later stages. The disease affects all three domains of life physical, psychological, and social.[2] As there is no cure for the disease, some basic care exists that helps the sufferers live an active life. Home-based care training has been a crucial intervention for patients with filarial lymphedema. Lymphedema management helps to prevent, promote, and maintain health and well-being. Development of the intervention module on home-based care training of patients with filarial lymphedema patients is adopted from the previous studies. The studies suggested that the home-based lymphoedema management program in the primary health care system has shown effective results in decreasing the morbidity due to lymphatic filariasis in very short term effective in reducing morbidity due to lymphatic filariasis in the short term, which can be less than 5 months. Also, this management does not require any additional human resources (4.5 months).[3],[4] There were various interventions carried out in the community settings to reduce the morbidity related to the disease but none of the interventions were carried out by a community health nurse by providing door-to-door services. Either the interventions were given in specific clinics or with the help of conducting camps. The opinions of experts in Community Medicine, Community Nursing, and Plastic surgery helped frame the intervention module. The current study was carried out in Odisha from October to November 2019. The study aims to describe the development of a structured intervention module for home-based care by combining the knowledge from different fields in helping patients to improve their quality of life.
| Materials and Methods | | |
Identification of the community problem
Orissa is an endemic state for filariasis. The prevalence rate of filariasis in the Khordha district of Bhubaneswar is 1.3%.[5] Affected people greatly affect physical, psychological, and social domains, resulting in poor quality of life for these patients. There is no cure for the disease, but some low-cost interventions do exist to reduce the suffering of the disease.
Assessment of the level of problem
People have reported problems in continuing their job, mobility problems, pain, problems in carrying out their usual activities, worry about the disease prognosis, lack of accessibility to medical facilities, poor financial status, etc.
Describing the prioritized group to benefit
The prioritized groups who will benefit from this intervention include the patients who are suffering from lymphedema of the lower limb and report poor quality of life.
Review of literature
The lymphedema staff manual given by the World Health Organization and Learner’s guide, which is a module for preventing disability due to lymphedema, has been referred.[6],[7],[8],[9]
Obtaining an expert’s opinion
Expert’s opinion was taken for the development of the intervention module. They suggested the same items, which were reviewed in the literature. So finally, a total of six components were included in the module. Suggestions were taken from five experts from different departments. Experts were from the community health nursing department, plastic surgery department, and community medicine department.
Obtaining the client’s input
After an in-depth interview and informal discussions with the patients, a large amount of information was obtained from the patients, and it has come to a conclusion that the interventions should be available at home and free of cost. Patients also asked for medications to be given free of charge.
Setting goals and objectives
Improving the quality of life of patients with filarial lymphedema of the lower limb
To alleviate the suffering of the patients having the disease
To prevent the painful episodes of acute dermatolymphangioadenitis adenitis attacks
The overall objective is to provide the complete package of recommended home-based care.
Specifying the core components of the intervention
The core components included in the module are washing the affected limb, drying the limb, light oil massage, exercise, the elevation of the limb, wearing appropriate footwear, and management of adenolymphangitis (ADL).
Regular washing of the leg
Wash the affected limb at least once a day with clean water at room temperature (do not use hot water) and ordinary, unperfumed soap. Make sure that the skin between the toes and skin folds is carefully dried.
Prevention and care of entry lesions
Every time the limb is washed, the skin should be examined for entry lesions that can be very small and hidden in between the toes (or fingers) or folds.
Light oil massage
Light oil massage can be done. Mustard oil is to be used for massaging the limb. Massage can be done for 10 min. It should be done gently with light hands by the person himself or herself. Help can be taken from any family member if not able to do so. It should be done after washing and drying the limb.
Elevation
The elevation is important for lymphatic filariasis sufferers with swelling (lymphoedema) to prevent the accumulation of fluid in the affected part of the body.
Exercise
Frequent exercise of the affected limb will bring relief. The exercises can be done anywhere and at any time, whether sitting, standing, or lying down, but should not be done during an acute attack.
Wearing appropriate footwear
The footwear should be comfortable, should not be tight, should allow air to circulate the foot, and should have a very low heel.
Management of acute attack
Pain relief is obtained by cooling the affected limb or another part of the body. Patient should drink plenty of water. Patient should rest, elevating the affected part of the body as comfortably as possible. Exercise should be avoided.
Identifying the mode of delivery through which each component of the intervention will be delivered
The intervention will be given to all the study subjects through a home visit. All the six steps of the intervention will be taught and demonstrated to the patients. Return demonstration will be taken under the supervision of the researcher.
Developing an action plan for the intervention
The intervention will be provided individually. A whole training session will be for 20–30 min. The intervention will be provided after the administration of the pretest questionnaire. Fifteen minutes will be set for teaching and demonstration, and the rest 15 min are given for return demonstration.
Content validation of module
The module was validated by experts from the community health nursing department, plastic surgery department, community medicine, and Family Medicine department. Experts were requested to rate the activities’ usefulness and feasibility on a five-point scale ranging from 1 to 5, wherein “1” signifies the not helpful activities and “5” denotes the beneficial activities. Activities rated with a score of three and above by the majority of experts were retained.
Pilot testing the intervention on a small scale
The intervention was tested on five study subjects to check its feasibility of the intervention.
Modification according to the results of a pilot study
One more component is added to the module as management of ADL attacks. Full details about the do’s and don’ts for the ADL attack management are explained. The component is added because of the queries raised by the patients.
Content revalidation of module
After adding one more component (management of ADL attack), the module is revalidated for content validity by two experts. The module got approved after the corrections.
Implementing the intervention and monitoring and evaluating the outcome
The final step is the implementation of the intervention. The intervention will be analyzed in terms of the attainment of objectives. A checklist is prepared to monitor the adherence to the management of the limb.
| Results | | |
In-depth interview
The central theme derived was the home-based care for lymphedema. Two components emerged from the interview. Clients were mainly concerned about washing and drying limbs and elevation of the stem. But the discussion with experts showed a different direction to the module by adding the other components such as prevention and care of entry lesions, exercises, management of ADL attacks, and wearing appropriate footwear. After analyzing the interviews and conducting further discussions among the authors, the intervention module was framed by focusing on seven components.
Thus, the intervention module had only individual sessions divided into three parts. The methodology used in the first part was a discussion with the help of flashcards. The second part was about giving a demonstration on components of home-based care. The third part was on the return demonstration. They were detailed about the intervention module, which was discussed in [Table 1].
Validation of the intervention module
Five experts from different fields validated the module. Experts were requested to rate the usefulness of the activities in each session on a five-point Likert scale ranging from 1 to 5, wherein “0” signifies the activities in that session “not helpful and not feasible,” and “4” means extremely helpful and feasible. Components rated with a score of 3 and above by the majority of experts were retained for the final module.[10]
The validation score for components of the intervention module was described in [Table 2]. Practices that received a score of 3 or more from 80% of the experts were retained in the final module. The content validity ratio for all the components was 1.0, indicating high validity.
A pilot study was done among five patients. The researcher provided the intervention for 1 day, followed by two follow-up visits at 10 days in October 2019. Baseline quality of life scores was calculated using the lymphatic filariasis Quality of Life Questionnaire. The data were not normally distributed. Only mean Quality of Life scores were calculated as the sample size was too small. The score at baseline was 80.06 (standard deviation = 11.43) and at the post-intervention was 85.77 (standard deviation = 8.95), which indicated a significant change in the quality of life.
| Discussion | | |
Mostly, all experts have rated the sessions as extremely helpful and recommended keeping the sessions with minor changes. Previous studies have used comparable methodology in validating interventions, and the content validity scores correspond to the current research.[11]
Community Health Nurses can provide home-based care training to patients with lower limb lymphedema. Even the caregivers can also be trained for home-based care. They can provide services in the peripheral areas for these patients with the help of an independent nurse-led clinic or participate in door-to-door services to train these patients. This model can be scaled up by training community health officers to provide interventions to the clients in the community. Community health officers at health centers such as Primary Health Centre and Community Health Centre can provide education on lymphedema management if any patient with lymphedema comes for treatment. Clinicians can also collaborate with frontline workers and community health nurses by forming a team to render services to the needful. Moreover, there is a need to develop awareness among the nursing students and train them about home-based care for filarial lymphedema to reduce morbidity.
Limitations of the study
Results of the study can not be generalized because of small sample size.
For more valid results, randomize control trails can be done.
| Conclusion | | |
Home-based care training with low-cost interventions can improve patients’ quality of life. The intervention module can be used in future studies to improve the morbidity rates of the diseases. Community health nurses can play a major role to scale up the model by providing services through home visiting. Future studies can use this model by providing care using demonstration, discussion, and redemonstration method. Hence, this pilot study had marked the need to optimize the intervention and providing it to a larger population. The community health nursing practice curriculum can have the topic of home-based care demonstration for lymphatic filariasis patients.
Ethical consideration
Ethical clearance was taken from Institute Ethical Committee, and permission to conduct the study was taken from the Informed written consent after explaining the study with the help of a patient information sheet.
Financial support and sponsorship
Nil.
Conflicts of interest
There are no conflicts of interest.
| References | | |
| 1. | Zeldenryk L, Gordon S, Gray M, Speare R, Melrose W Disability measurement for lymphatic filariasis: A review of generic tools used within morbidity management programs. PLoS Negl Trop Dis 2012;6:e1768.  |
| 2. | Krishna Kumari A, 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. |
| 3. | Jullien P, Somé JDA, Brantus P, Bougma RW, Bamba I, Kyelem D Efficacy of home-based lymphoedema management in reducing acute attacks in subjects with lymphatic filariasis in Burkina Faso. Acta Trop 2011;120:S55-61. |
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| 5. | Walsh V, Little K, Wiegand R, Rout J, Fox LM Evaluating the burden of lymphedema due to lymphatic filariasis in 2005 in Khurda District, Odisha State, India. PLoS Negl Trop Dis 2016;10: e0004917. |
| 6. | World Health Organization. Training module on community home-based prevention of disability due to lymphatic filariasis. World Health Organization; 2003. |
| 7. | World Health Organization. Lymphoedema staff manual: treatment and prevention of problems associated with lymphatic filariasis. World Health Organization; 2001. |
| 8. | McPherson T Impact on the quality of life of lymphoedema patients following introduction of a hygiene and skin care regimen in a Guyanese community endemic for lymphatic filariasis: A preliminary clinical intervention study. Filaria J 2003;2:1-5. |
| 9. | Douglass J, Mableson HE, Martindale S, Kelly-Hope LA An enhanced self-care protocol for people affected by moderate to severe lymphedema. Methods Protoc 2019;2:77. |
| 10. | Govindaraj R, Varambally S, Sharma M, Gangadhar BN Designing and validation of a yoga-based intervention for schizophrenia. Int Rev Psychiatry 2016;28:323-26. |
| 11. | Narahari SR, Bose KS Aggithaya MG, Swamy GK, Ryan TJ, et al. Community level morbidity control of lymphoedema using self care and integrative treatment in two lymphatic filariasis endemic districts of South India: A non randomized interventional study. Trans R Soc Trop Med Hyg 2013;107:566-77. |
[Table 1], [Table 2]
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