The effect of distance empowerment program on the sense of coherence among multiple sclerosis patients: A quasi-experimental study

Abstract

BACKGROUND:

There is no definitive cure for multiple sclerosis, and symptom control is a crucial part of treatment. This study aimed to determine the effect of distance empowerment programs on the sense of coherence in patients with multiple sclerosis.

MATERIALS AND METHODS:

This is a quasi-experimental study conducted on 64 multiple sclerosis patients from the Saveh MS Association in 2020. Participants were randomly divided into control (32) and intervention groups (32). The intervention group participated in a distance empowerment program with weekly telephone follow-ups for 2 months. Patients’ sense of coherence was evaluated before and after the program using Antonovsky’s Multiple Sclerosis sense of coherence scale and analyzed with SPSS software version 23.

RESULTS:

The mean score of sense of coherence in the intervention group after the implementation of the empowerment program was 68.93 ± 9.99, which showed a statistically significant difference compared to before the intervention (P < .001).

CONCLUSIONS:

Distance empowerment affects the sense of coherence of patients with multiple sclerosis and has led to an increase in sense of coherence scores after the empowerment program.

Introduction

Today, chronic diseases have become widespread due to the modernization of societies, industrialization, technological progress and population density in urban areas, changes in lifestyle, and people’s tendency to partake in inappropriate habits. Such diseases cause many psychological and social problems for people, including long-term living with disease symptoms, and disability that endangers people’s identity and changes their roles.[1] One of the chronic diseases is multiple sclerosis (MS). It is the most common non-traumatic disabling disease in young adults[2] and the third leading cause of disability in adults. Multiple sclerosis is a chronic and inflammatory disease of the central nervous system. Multiple sclerosis affects sensory, motor, and cognitive functions by damaging axons and myelin.[3] The main cause is still unknown, but various studies have found factors such as trauma, immunological stress, genetics, and environmental factors to be effective in the occurrence of this disease.

The prevalence of multiple sclerosis in women is twice that of men and the age of onset of the disease is usually between 20 and 40 years and it may also occur from 20 to 80 years.[4] According to statistics, 2.8 million people worldwide have the disease.[5] In Iran, according to the statistics of the Multiple Sclerosis Association, there are currently 74,000 patients with multiple sclerosis.[6] Early symptoms include fatigue, depression, weakness, apathy, impaired coordination, imbalance, and pain. There is no definitive cure for multiple sclerosis.[2]

Sense of coherence describes how humans can deal with various stressful factors of daily life. The main concept of this theory includes three components: comprehensibility, manageability, and meaningfulness. Comprehensibility (a person’s consciousness can observe the world in a comprehensive, consistent, predictable, and explainable way), manageability (a person’s ability to cope with needs and understand sufficient resources to respond to internal and external stimuli), and being meaningful (the motivational component is the sense of coherence that leads people to improve their understanding of the world and resources). Multiple sclerosis threatens a person’s sense of coherence because the disease is unpredictable, its origin is unknown, and no definitive treatment is available for it.[7] Multiple sclerosis creates a great challenge for doctors in terms of how to empower patients to deal with the disease for a long time, and it seems that the sense of coherence can play an important role in the process of empowering patients.[8]

Empowerment means improving the sense of trust and positive adaptability, the feeling of power control, and helping others to achieve their goals. The principles of empowerment include the ability to solve problems, self-reliance, and building self-confidence, in such a way that empowerment is the main pillar in the direction of improving the health of society.[9] Continuous follow-up is considered an essential part of care services, and patients who are followed up are more likely to change their poor health behaviors.[10] Meanwhile, telephone follow-up is a very useful and inexpensive way to evaluate patients outside of care hours, which can lead to a reduction in frequent visits.[11]

There is no cure for multiple sclerosis and the treatment of these patients without the participation of the patient is not effective.[2] Among the members of the health team, nurses have the closest relationship with patients and their families.[12] and allows patients to improve their daily activity performance.[13] The need for empowerment programs to improve the sense of coherence was felt in patients with MS. On the other hand, due to MS problems, such as fatigue, pain, muscle weakness, lack of coordination of movements, etc., this empowerment program is implemented distantly, which is possible if it is easier and more acceptable to the patient.

Materials and Methods

Study design and setting

This is a two-group quasi-experimental study conducted on multiple sclerosis patients from the Saveh MS Association in 2020.

Study participants and sampling

The study population consisted of 64 individuals who were invited to participate using a convenience sampling method. They were then randomly assigned to either the control group (32 participants) or the intervention group (32 participants) using the random block method.

Inclusion criteria included confirmation of multiple sclerosis by a neurologist, membership in the Multiple Sclerosis Association, age between 20 and 60 years, absence of acute or chronic physical, mental, or psychological disorders (including severe depression), no speech or hearing impairment, not being in the acute disease stage, ability to use a mobile phone and computer, and an extensive disability status score (EDSS = 4). Exclusion criteria included non-cooperation, disease recurrence, patient death, acute disorders, and long-term hospitalization.

To determine the sample size, the study followed Omid’s research. Based on a 95% confidence level and 80% test power (α = 0.05 and β = 0.2), the calculated sample size was 58 individuals. Accounting for a 10% potential dropout rate, a total of 64 participants were estimated and then divided into the intervention and control groups.

Data collection tool and technique

Data collection tools included a demographic questionnaire and Antonovsky’s Sense of Coherence questionnaire. Sense of Coherence Questionnaire has 13 questions which are extracted from its 29-question form, which is a 7-point Likert scale from 1 to 7. The questionnaire includes three subscales: comprehensibility, manageability, and meaningfulness. In Iran, Mohammadzadeh, Poursharif, and Alipour standardized the mentioned questionnaire on Iranian students after translation, and obtained Cronbach’s alpha of the questionnaire in male and female students, respectively, 0.75 and 0.78. To check the validity of the questionnaire, they investigated the relationship between the subscales of comprehensibility, management ability, and meaningfulness with the total score of the questionnaire, and these results were obtained as 0.81, 0.86, and 0.76, respectively. The validity and reliability of the scale were satisfactory. Questions (12, 7, 4, and 1) are related to the meaning subscale, questions (11, 9, 8, 6, and 2) are related to the comprehensibility subscale, and questions (13, 10, 5, and 3) are related to the management ability subscale. Questions (10, 7, 3, 2, and 1) should be reversed. The minimum score is 13 and the maximum score is 91.[14] To check the reliability of the questionnaire in the present study, the internal consistency method and Cronbach’s alpha calculation, which was calculated as 0.79, were used. Also, a qualitative validation method was used for the validity of educational materials. In this way, educational materials were sent to eight specialists, including neurologists and nursing faculty members, and they provided their opinions on the educational materials.

In the intervention group, patients were initially interviewed to determine the necessary content for the empowerment program. To create the program, these patients joined WhatsApp and Telegram groups and received access to a dedicated blog. Meanwhile, the control group did not receive any intervention. For the intervention group, educational materials were sent via the blog, WhatsApp, and Telegram twice a week over a 2-month period. Additionally, a researcher with a master’s degree in nursing conducted weekly 15-min telephone follow-ups based on patients’ preferred schedules, addressing their questions and concerns. The educational materials provided to the intervention group covered a wide range of topics, including disease definition, diagnosis, treatment, complications, recognition of physical symptoms, anxiety management, relaxation techniques, problem-solving skills, mental strengthening, and coping with various disease-related challenges (such as fatigue, pain, stiffness, muscle spasms, and movement disorders). The program also addressed excretory issues (intestinal and bladder), sexual health, swallowing difficulties, vision problems, cognitive issues, proper exercise, and familiarity with support systems. Two months after the intervention, both the intervention and control groups completed the multiple sclerosis sense of coherence questionnaires. The scores were then compared and evaluated to assess the impact of the empowerment program.

Data analysis

SPSS v23 was used for statistical analysis. To report the demographic characteristics of the samples, absolute and relative frequency, mean, and standard deviation were used. Chi-square and Fisher’s tests were used to compare the demographic variables of the intervention and control groups. To determine the effect of the distance empowerment program on the sense of coherence of the samples, paired t-tests and independent t-tests were used.

Ethical consideration

This study was approved by the Ethics Committee of Arak University (Ethics Code: IR.ARAKMU.REC.1399.206). All participants provided written informed consent before enrolment in the study. This research was conducted ethically in accordance with the World Medical Association Declaration of Helsinki.

Findings

Five patients (two from the intervention group and three from the control group) were excluded from the study due to not completing the questionnaires. Finally, the data of 59 patients were analyzed. Demographic information of the intervention and control groups is shown in Table 1. According to the Fisher and Chi-square test, there were no significant statistical differences in demographic variables (gender, age, marital status, employment status, and duration of infection) between the two intervention and control groups. The mean and standard deviation of the age of the subjects in the intervention group was 32 ± 8.27 and for the subjects in the control group, it was 35 ± 7.43. The highest frequency of the samples was female (93.3%) and unemployed (70%).

Table 1.

Frequency and percentage of the demographic variables of two groups

Variables		(Years)		Number (Percentage)				Significance Level*
				Intervention		Control
Age		20 Years		2 (6.7)		0		0.135
		21-25		2 (6.7)		4 (13.8)
		26-30		7 (23.3)		6 (20.7)
		31-35		9 (30)		6 (20.7)
		36-40		5 (16.7)		4 (13.8)
		41-45		2 (6.7)		8 (27.6)
		46-50		3 (10)		0
		51-55		0		1 (3.4)
Gender		Male		2 (6.7)		4 (13.8)		0.424
		Female		28 (93.3)		25 (86.2)
Marital status		Married		25 (83.3)		26 (89.7)		0.832
		Single		4 (13.3)		2 (6.9)
		Married		25 (83.3)		26 (89.7)
		Divorce		1 (3.3)		1 (3.4)
Education		Illiterate		0		0		0.483
		Primary and middle		3 (10)		5 (17.2)
		Secondary		15 (50)		10 (34.5)
		Academic		12 (40)		14 (48.3)
Duration of multiple sclerosis years		1-5		13 (43.3)		7 (24.1)		0.217
		6-10		7 (23.3)		14 (48.3)
		11-15		6 (20)		3 (10.3)
		16-20		3 (10)		2 (6.9)
		Over 20 Years		0		1 (3.4)

*Fisher’s test or Chi-square is significant at P≤0.05

The mean and standard deviation scores of sense of coherence in the control and intervention groups before the study were (57.79 ± 13.08 and 55.40 ± 14.38), respectively. Independent t-tests showed that there was no significant difference in the mean score of sense of coherence between the control and intervention groups before the intervention.

After the implementation of the empowerment program, the mean scores of sense of coherence in the intervention group increased compared to the control group, which had a statistically significant difference between the two groups (P < .001). Also, the results of the paired t-test showed that the sense of coherence score of the intervention group increased significantly after the intervention compared to before the intervention (P < .001). However, there was no statistically significant difference in the control group [Table 2].

Table 2.

Comparison of the mean and standard deviation of the Sense of Coherence scores in two stages before and after intervention in intervention and control groups

Variables		Group		Before				After				Significance Level*
				Mean		SD		Mean		SD
Sense of coherence		Intervention		55.40		14.38		68.93		9.99		0.001
		Control		57.79		13.08		56.07		12.51		0.229
		Significance level**		0.507				0.001				-

*Paired t-test is significant at P≤0.05. **Independent t-test is significant at P≤0.05

Discussion

The results showed that the distance empowerment program increased the sense of coherence in patients with multiple sclerosis. The results of the present study showed that the distance empowerment program affected the sense of coherence of the multiple sclerosis patients participating in the study and the sense of coherence of patients in the intervention group significantly improved after the intervention. This result is in line with the findings of Hourzad et al.,[15] Musavinasab et al.,[16] Štern et al.,[17] Mirhashmi,[18] Von Humboldt et al.,[19] Pourfarid,[20] and Marzyniak.[21] In Hourzad et al.[15] study, retired elderly people with chronic diseases participated in a five-stage self-management empowerment model. The results showed that the use of the self-management model can lead to improvement of self-efficacy and a sense of coherence among retired elderly persons with chronic diseases. This model can be used to empower the elderly to achieve understanding, management, and meaningfulness in their lives. Empowerment was obtained from various aspects of the elderly’s life, including self-awareness of changes, improvement of independence, adaptability, feeling of higher control, and life satisfaction. By creating awareness of living, environmental, and social conditions, as well as available resources, we can motivate the elderly to identify their self-management abilities in the direction of self-reliance and problem-solving.[15] In the present study, the implementation of empowerment programs in patients with multiple sclerosis led to an increase in the sense of coherence in these people, and since the sense of coherence plays a major role in individual adaptation to multiple sclerosis and health in general, it can be said that such a program can be used to diagnose, predict and improve the health status of people, especially those with multiple sclerosis.

In line with the results of our study, we can refer to Mohamadirizi et al.[22] study, which aimed to compare the effects of electronic education and illustrated booklets on the awareness of patients with multiple sclerosis (MS). In this study, MS patients were randomly divided into e-learning and illustrated booklet groups. The findings showed that both electronic education and illustrated booklets significantly improved the knowledge levels of MS patients. Additionally, the electronic education method proved to be more effective than pamphlets in increasing awareness about the disease. Considering the many challenges faced by MS patients and the lower time and cost associated with electronic education, this method can be used by patients and healthcare providers alongside traditional methods.

The results of a study conducted by Hedayati,[23] aimed at improving the health and self-esteem of patients and their family members, showed that implementing the family-centered empowerment model can significantly enhance self-care for high blood pressure in the elderly. This model increases family knowledge and improves the self-efficacy and self-esteem of the elderly.

Today, patients and their families play a crucial role in treatment programs for chronic diseases, and without their participation, effective treatment and care are not possible. Therefore, using empowerment programs for patients and their families can lead to improved self-management of the disease. The results of Hedayati’s study are consistent with the findings of our study.

In the study of Mousavi Nasab et al.,[16] a five-stage self-management empowerment model was used for the intervention group (elderly patients with cardiovascular diseases), which increased the sense of coherence in these patients. Adopting self-management behaviors plays an important role in empowering the elderly, disease management, and creating successful adaptation to changes in various aspects of life. In interventions and educational programs related to aging, attention to knowledge, and awareness of individual and social resources can promote health and improve the quality of life of the elderly with chronic diseases. This model can provide a framework for the design of nursing education for the empowerment of the elderly. In the research that was conducted, the use of empowerment programs, adequate and timely education about the disease and its complications, and effective interventions led to an increase in the sense of coherence in multiple sclerosis patients. The findings of Štern et al.[17] show that the sense of coherence can be considered a targeted intervention and used in managing multiple sclerosis problems. This study identified a sense of coherence as an important, independent, and stable determinant of health-related quality of life in MS patients.

In line with our study, we can refer to Robles Sanchez’s research, which aimed to evaluate the Catalonia specialist patient program on quality of life, disease-related knowledge, and self-management in people with multiple sclerosis. In this study, 144 patients with multiple sclerosis participated in six teams, and the intervention included nine distance learning sessions led by peers. Study variables were measured at 6 and 12 months after the sessions concluded. Peer-to-peer learning programs help empower people with chronic illnesses, providing them with tools to improve their independence and quality of life. Consistent with the results of our study, remote interventions benefit both individuals with chronic diseases and the healthcare system by facilitating family and work reconciliation, saving time, easing attendance at meetings, reducing costs, and optimizing resource use.[24]

The results of the research conducted by Arab et al.,[25] aimed at determining the effect of distance empowerment programs on the self-efficacy of MS patients, showed that distance empowerment positively impacts self-efficacy scores. Tele-empowerment is a low-cost intervention for MS patients, saving them time and energy, and eliminating the need for travel to receive care services. This study should be repeated over a longer period and include a 6-month follow-up. Additionally, this empowerment program can be applied to individuals who have recently been diagnosed with MS and other chronic diseases.

Mirhashmi et al. showed that circuit solution therapy can be effective in the resilience and sense of coherence of patients with multiple sclerosis.[18]

The findings of the study by von Humboldt et al.,[19] titled “Aging with diabetes: Sense of cohesion and life satisfaction in European elderly adults with Type 2 diabetes,” showed that the sense of coherence can successfully adapt to life challenges in diabetic patients. Chronic diseases, such as diabetes, and the presence of various diseases affect people’s life satisfaction and sense of coherence in different ways. This study showed the importance of life satisfaction and a sense of coherence for elderly people, especially when there is diabetes and their relationship in the context of healthy aging in older populations.

The study by Pourfarid et al.,[20] under the title “The effect of self-care education with the telenursing approach on health-promoting behaviors in multiple sclerosis patients during the COVID-19,” showed that self-care training with the telenursing approach can affect health promotion behaviors in multiple sclerosis patients. It seems that this intervention has significantly favorable effects in achieving the predicted health outcomes, increasing the self-care ability of MS patients and their independent self-care, and finally, improving their quality of life as a secondary effect. The necessary policies and programs for self-care education using the remote nursing approach can help to reduce the time loss and costs incurred on the health care system and the patient. In this study, the self-care approach program was conducted 3 days a week for 6 weeks through WhatsApp, and patients were assessed over the phone. Also, patients could call the researcher on weekdays if they felt the need for a 10-15 min telephone consultation.

The results of the study by Marzyniak et al.[21] showed that the development of digital programs and remote communication technologies, remote monitoring of symptoms and side effects of patients with multiple sclerosis also leads to the optimal use of limited resources such as time for visiting the clinic in person and this issue can lead to providing timely and more interventions than what is possible with scheduled in-person visits. These benefits are necessary because multiple sclerosis is a chronic, multifaceted disease that requires ongoing monitoring, evaluation, and management. These results align with our study on the use of remote empowerment programs in patients with multiple sclerosis.

Strengths and Limitations

Distance empowerment programs make it possible for patients to access them regardless of their location. These programs typically require fewer resources, reducing costs associated with travel, accommodation, and physical space. Patients can access the program at any time, fitting it into their schedules without the need for long-term commitments. Empowerment programs can significantly improve patients’ sense of coherence and ability to adapt to their condition.

This study has two notable limitations. First, it only included participants with smartphone access, excluding those without access to WhatsApp and Telegram messenger programs. Second, there was no long-term follow-up of patients after the intervention. To enhance healthcare for individuals with chronic diseases, including multiple sclerosis, providing necessary facilities for such services can improve overall health, patient adaptation, and reduce costs associated with referrals and frequent visits.

Conclusion

The study demonstrated that distance empowerment programs significantly enhance the sense of coherence in patients with multiple sclerosis (MS). These programs, which include education and regular follow-up through digital platforms, provide a cost-effective, accessible, and flexible approach to patient empowerment. Given the unpredictable nature and lifelong management requirements of MS, such programs offer vital support by improving patients’ ability to comprehend, manage, and find meaning in their condition.

The findings support the integration of remote empowerment initiatives into health policy, particularly for chronic diseases like MS that affect a young and dynamic population. By minimizing the need for in-person visits and reducing healthcare system costs, distance-based programs can be an effective alternative to traditional care methods. Moreover, the scalability and ease of access make them suitable for widespread implementation in various healthcare settings, especially for patients with limited mobility or those living in remote areas.

In conclusion, incorporating remote empowerment programs into healthcare policies could improve patient outcomes by enhancing self-management and adaptation to chronic conditions like MS. Expanding such programs to other chronic diseases would further support patient well-being while optimizing healthcare resources.

Data availability statement

The datasets used or analyzed during the present study are available from the corresponding author upon reasonable request. The data are not publicly available due to privacy and ethical restrictions.

Conflicts of interest

There are no conflicts of interest.

Funding Statement

The authors disclosed receiving financial support for this research, authorship, and/or publication. This work was supported by the medical research department of the School of Nursing and Midwifery at Arak University of Medical Sciences.