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

doi:10.21203/rs.3.rs-2477327/v1

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

https://doi.org/10.21203/rs.3.rs-2477327/v1

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Background: Multiple sclerosis is the most common central nervous system disease that causes permanent disability in young adults. There is no definitive cure for multiple sclerosis, and symptom control is an important part of the treatment of multiple sclerosis patients. This study aimed to determine the effect of distance empowerment programs on the sense of coherence in multiple sclerosis patients.

Methods: This research was conducted on 64 people with multiple sclerosis who were referred to Saveh MS Association in a semi-experimental method in 2020. The random block method divided the research subjects into two control groups (32 people) and intervention groups (32 people). The control group only received routine care from the MS Association, but the intervention group, in addition to the routine care, underwent a distance empowerment program (via WhatsApp, Telegram, and blog) and weekly telephone follow-up for two months. Patients’ sense of coherence in the intervention and control groups was evaluated before and immediately after the empowerment program using Antonovsky's Multiple Sclerosis sense of coherence scale and was analyzed using SPSS software version 23.

Results: In total, the data from 59 samples were analyzed. 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<0.001). Also, the mean score of the sense of coherence after the intervention was significantly higher in the intervention group than in the control group (P<0.001).

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 implementation of the empowerment program.

Empowerment

Multiple Sclerosis

Sense of Coherence

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 20–40 years old and it may also occur from 20–80 years old [4]. According to statistics, two million and five hundred thousand 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]. The symptoms of multiple sclerosis are highly variable and depend on the location and severity of the central nerve lesions. Early symptoms include fatigue, depression, weakness, apathy, impaired coordination, imbalance, and pain. There is no definitive cure for multiple sclerosis [2].

The concept of a sense of coherence was expressed in 1970 by Israeli-American sociologist Antonovsky. Its purpose is to describe 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). A person with a strong sense of coherence copes more with the corresponding conditions than a person with a weak sense of coherence [7–9]. 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 [10]. 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[11].Empowerment was first introduced by Anderson and his colleagues [12]. Empowerment means improving the sense of trust and positive adaptability, 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[13]. Empowerment is a partnership-oriented approach, in addition to identifying patients' problems, it helps patients to identify and make maximum use of their abilities to manage the disease [14]. Empowerment of the patient begins with giving information and education and it ends with the active participation of the patient in making decisions about the disease process and acting on them [15]. Healthcare management also reduces the workload of healthcare personnel[16]. 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[17]. 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[18]. Since there is no cure for multiple sclerosis and the treatment of these patients without the participation of the patient is not effective[2]. Also, among the members of the health team, nurses have the closest relationship with patients and their families[19]. and can help patients to improve their abilities in daily activities[20]. The need for empowerment programs to improve the sense of coherence was felt in patients with MS. On the other hand, due to the 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. Therefore, this study was designed to determine the effect of distance empowerment programs on the sense of coherence in patients with multiple sclerosis.

Study design and sample

The current research is a semi-experimental study with two groups (control and intervention). The statistical population of the present study is all patients with multiple sclerosis who are members of the Saveh MS Association in 2020 and who are eligible to enter the study. The researcher referred to the location of the MS Association and made a phone call to the doctors and explained the current research (objective of the study, implementation method). Sixty-four people from this community were invited to the present research to complete the sense of coherence questionnaire and obtain information. Then, the samples were divided into two control groups (32) and intervention (32) using the random block method. The entry criteria for participating in this study include informed consent to participate in the study, confirmation of multiple sclerosis by a doctor and membership in the Multiple Sclerosis Association, age between 20-60 years, and not having any acute or chronic physical disorders, mental or psychological disorders such as severe depression, no speech or hearing impairment, not being in the acute stage of the disease, having the ability to use a mobile phone and computer, and the extensive disability status score (EDSS = 4). Exclusion criteria included no cooperation and satisfaction in participating in the study, recurrence of the disease, death of the patient, suffering from acute disorders, and long-term hospitalization. To determine the size of the samples according to Omid's study [21] and according to the 95% confidence level and 80% test power (α=0.05 and β=0.2), the sample size was calculated to be 58 people in two intervention and control groups. According to the probability of 10% spillage, a total of 64 samples were estimated, which were divided into two intervention and control groups.

Ethical considerations

This study has been approved by the Medical Research Ethics Committee of Arak University of Medical Sciences. The code 1399.206IR.ARAKMU.REC was given. All methods were performed with relevant regulations and guidelines.

Procedure

The patients in the intervention group were first interviewed about the content required for the empowerment program. To achieve the content of the empowerment program, the patients of the intervention group became members of WhatsApp and Telegram groups, and the blog address was provided to them. The control group received routine care from the MS Association. For the intervention group, educational materials on the blog, WhatsApp, and Telegram, were sent twice a week for two months. Also, to follow up on education and care, 15 minutes per week based on patients' preferred time, telephone calls were made to them and their questions were answered. The educational materials sent to the patients of the intervention group included the following topics: defining the disease, diagnosis, treatment, complications caused by the disease, recognizing the physical symptoms of the disease and its problems, controlling anxiety and stress, teaching relaxation techniques, problem-solving skills, strengthening the mind, controlling the complications of the disease such as fatigue, pain (pharmacological and non-pharmacological methods), stiffness, muscle spasms, movement disorders and muscle weakness, excretory disorders (intestinal, bladder), sexual disorders, swallowing, vision, cognitive disorders, proper exercise and familiarity with support and assistance systems.

Two months after the intervention, the multiple sclerosis sense of coherence questionnaires were completed again by the intervention and control groups. Then the scores of the sense of coherence questionnaire in both groups before and after the intervention were compared and evaluated.

Data collection

Data collection tools included a demographic questionnaire and Antonovsky's Sense of Coherence questionnaire. The sense of coherence questionnaire was designed by Antonovsky in 1987. Antonovsky’s 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, 1) are related to the meaning subscale, questions (11, 9, 8, 6, 2) are related to the comprehensibility subscale, and questions (13, 10, 5, 3) are related to the management ability subscale. Questions (10,7,3,2,1) should be reversed. The minimum score is 13 and the maximum score is 91[22]. 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 8 specialists, including neurologists and nursing faculty members, and they provided their opinions on the educational materials. Then the opinions of education experts were changed.

Data analysis

SPSS software version 23 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.

Considering that the significance level of the Kolmogorov-Smirnov test in the Table 1 for the sense of coherence variable is greater than 0.05, it is concluded that the sense of coherence distribution is not significantly different from the normal distribution.

Five patients (two from the intervention group and three from the control group) were excluded from the study due to not completing the questionnaires, and 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, 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%).

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)8), 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<0.001). 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<0.001). However, there was no statistically significant difference in the control group (Table 2).

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 [23], Mousavi Nasab[24], Stern[25], Mirhashmi[26], von Humboldt[27], Pourfried[28], and Odajima[29]. In Hourzad et al.'s study, retired elderly people with chronic diseases participated in a five-stage self-management empowerment model. (1) Self-awareness of changes and personal level understanding of performance and expectations, 2) Optimal targeting, 3) Planning, 4) Regulation of physical, psychological, and social structures, 5) Evaluation. 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[23]. 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 the study of Mousavi Nasab et al., 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[24]. The findings of Stern et al. 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[25].

Mirhashmi et al. showed that circuit solution therapy can be effective in the resilience and sense of coherence of patients with multiple sclerosis[26].

The findings of the study by von Humboldt et al., 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[27].

The study by Pourfarid et al., 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 three days a week for six 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 to 15 minute telephone consultation[28].

The study by Odajima et al., under the title “Development, and validation of an educational program to enhance the sense of coherence in patients with diabetes mellitus type 2”, provides a diabetes education program and, by increasing the sense of coherence, focusing on reducing the burden caused by diabetes, it showed that the educational program led to an improvement of the sense of coherence in people with type 2 diabetes. In this study, the control group received a lecture-based educational program that was presented in a general hospital in Japan, in the intervention group; In addition to the center's educational program, patients received four 30-minute group sessions of diabetes education[29]. However, in our study, the empowerment program and distance education was carried out for two months along with telephone follow-up. On the other hand, we organized a remote empowerment program due to the problems that MS can cause for people, such as fatigue, pain, muscle weakness, issues and problems related to commuting, etc. Also, the average age of participants in Odashima's study was 59.1 ± 14.2 in the intervention group and 59.5 ± 12.4 in the control group, but in our study, most samples were in the age range of 31–40. However, the remote empowerment program in our study also led to an improvement in the sense of coherence among the study participants.

The results of the study by Marzyniak et al. 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[30].

In the present study, the effect of distance empowerment programs on the sense of coherence in multiple sclerosis patients was measured. According to the obtained results, it was found that the distance empowerment program significantly improved the sense of coherence in multiple sclerosis patients. Considering that multiple sclerosis is one of the chronic diseases and also involves the young and dynamic segment of society, the use of such programs can be effective in adapting to the disease as much as possible and since this program is held distantly, there is no need to travel a long distance, spend a long time, allocate space to provide empowerment programs, and it does not require a lot of money, and these programs can be accessed easily and at any time, therefore, they are recommended. Such programs can be used to increase the ability of patients with other chronic conditions. One of the limitations of the research is not having a smartphone and WhatsApp and Telegram messenger programs, because at first, only samples who had access to a smartphone were included in the study. Another limitation of this research is the lack of follow-up of patients over a long period after the intervention. In general, by providing the necessary facilities to provide such services to patients with chronic diseases, especially multiple sclerosis, it is possible to take steps towards improving the health of society and the adaptation of people with multiple sclerosis, as well as reducing the costs related to referrals and frequent visits in these patients.

Acknowledgments

This article is part of a thesis for a Master of Science in Nursing which has been approved by the Deputy of Research of Arak University of Medical Sciences. We would like to express our gratitude and appreciation to the Vice-Chancellor for Research of the School of Nursing and Midwifery of Arak University of Medical Sciences and all those who helped us in this study, as well as patients and colleagues of the Saveh MS Association.

Authors' contributions

Author FA: Data curation, Investigation, Methodology, Resources, Software, Supervision, Writing original draft. Author DH: Writing original draft, Writing review & editing, Conceptualization, Methodology, Project administration, Supervision, Validation. The authors read and approved the final manuscript. Author MS: Methodology, Project administration, Supervision, Data curation, Investigation, Validation.

Funding:

This study was financially supported by Arak University of Medical Sciences, Iran.

Availability of data and materials

The datasets analyzed during the current study are available from the corresponding author upon reasonable request.

Declarations:

Ethical considerations

This study has been approved by the Medical Research Ethics Committee of Arak University of Medical Sciences. The code 1399.206IR.ARAKMU.REC was given. Written informed consent was obtained from all samples to participate in the study. The research samples were informed that participation in the research is optional and if they do not wish to continue participating in the research, they have the right to cancel without any restriction on receiving the services of the Multiple Sclerosis Association. All information from the research samples was confidentially analyzed and reported.

Consent for publication

Not applicable.

Competing interests

The authors declare that they have no competing interests.

Author details

¹MSc of Nursing, Instructor. School of Nursing and Midwifery, Saveh University of Medical Sciences, Saveh, Iran.²Ph.D. in Nursing. Professor. Nursing department, School of Nursing and Midwifery, Arak University of Medical Sciences, Arak, Iran.²Ph.D. in Nursing. Assistant Professor. Nursing department, School of Nursing and Midwifery, Saveh University of Medical Sciences, Saveh, Iran.

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Table 1 Frequency and percentage of the demographic variables of two groups

		intervention group	Control group	Significance Level
variables	)years(	number (percentage)	number (percentage)	Significance Level
age	20 years	2(6.7)	0(0)	0.385
	30-21 years	9(30)	(34.5)10
	31-40 years	(46.7)14	(34.5)10
	50-41 years	(16.7)5	(27.6)8
	Over 50 years	0	(3.4)1
gender	male	(6.7)2	(13.8)4	0.424
gender	female	(93.3)28	(86.2)25	0.424
Marital status	Married	(83.3)25	(89.7)26	0.706
Marital status	single	(16.7)5	(10.3)3	0.706
job	non-employed	21(70)	(79.3)23	0.552
job	employed	9(30)	(20.7)6	0.552
Duration of multiple sclerosis years	10-1 years	21(70)	(79.3)23	0.360
	20-11 years	9(30)	(17.2)5
	Over 20 years	-	(3.4)1

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

Variable

Control group

Within the group

Interventinal group

Within the group

Between groups(pre-test)

P-value

Between groups(post-test)

P-value

Pre- test

Post test

P-value

Pre- test

Post-test

P-value

Sense of Coherence

57.79±13.08

56.07±12.51

0.229

55.40±14.38

68.93±9.99

0.001

0.507

0.001

No competing interests reported.

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

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