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The effect of education of self-care behaviors on the quality of life and resilience of multiple sclerosis patients

BMC Neurology volume 24, Article number: 264 (2024) Cite this article

Abstract

Background

Multiple sclerosis (MS) is one of the most common causes of non-traumatic disability in young adults. Typically, doctors diagnose MS between the ages of 20 and 50. This study aims to determine the effect of educational intervention on self-care behaviors on MS patients’ quality of life and resilience in Shiraz, Iran.

Methods

This interventional study included 90 individuals, aged 15 to 50, who were members of the support association for MS patients in Shiraz city, Iran. The study employed a convenient sampling method. Patients were randomly assigned to two experimental and control groups, and the self-care educational program was conducted during six educational sessions. The quality of life and resilience of the patients were measured before and after the study. Information was collected by completing the questionnaires before and three months after the intervention. To analyze the data, SPSS 23 was used. To describe the data, frequency, percentage, mean, and standard deviation indicators were used, and for analysis, independent t-tests and paired t-tests were used.

Results

This study examined a total of 90 MS patients. 50.4% of the people in the study were married, 40% of them had a high school diploma, and 78.5% were unemployed. The results of the t-test showed that there was a significant difference between all the components of self-care, quality of life, and resilience before and after the intervention (P < 0.05).

Conclusion

By accepting the responsibility of self-care, patients would improve the inadequacies and disabilities resulting from the disease, use the power of self-care to solve problems, and improve their quality of life and resilience.

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Introduction

Young adults typically diagnose multiple sclerosis (MS), one of the most common causes of non-traumatic disability, between the ages of 20 and 50 [1, 2] and is mostly diagnosed between the ages of 20 and 50 [2]. This disease occurs three times more often in women than in men [3]. Today, approximately 700,000 people in America and more than 2.5 million people in the world suffer from MS [4]. Comparative statistics highlight the higher prevalence of MS in West Asia and the Middle East countries, including Iran, compared to East and South Asia [5]. According to statistics from the MS Association of Iran, 70,000 people in Iran suffer from this disease [6]. This places Iran at the forefront among Middle Eastern nations in terms of MS prevalence [6]. Over the last century, the prevalence of this disease has steadily increased, primarily among women [7]. Today, despite the significant advances in medical knowledge, the diagnosis of the cause and the definitive treatment of this disease are still unknown.

Weakness, disability, movement limitations, stress, psychological and nervous disorders, depression, etc. are major complications that can affect the personal and social lives of MS patients and transform them into isolated and reclusive people [8]. Although the cause of this disease is not known, stress and psychological factors play a significant role in the aggravation of the disease and the occurrence of new attacks. Experts recommend that MS patients prioritize avoiding anxiety, stress, and mental tension over drugs and complex treatments [9]. This disease presents a constant challenge for the family, draining their energy and causing delays in their movement and activities. It is also a costly disease from various perspectives [10]. Research indicates that MS patients suffer severe damage to their quality of life [11].

In all aspects, quality of life is a dynamic and subjective structure that compares the past life situation with recent events [12]. This concept deals with people’s perception of their life situation instead of the reports of others; therefore, patients with similar problems may have different opinions about their quality of life and report it in different ways [13, 14]. Measuring the quality of life is of great value, as some people call the improvement of the quality of life the most important goal of therapeutic interventions, and the maximum importance of this is related to patients with chronic diseases whose definitive treatment is not known [15]. Studies demonstrate that patients with long-term conditions can improve their health through education. Education can successfully reduce anxiety and depression, improve social tendencies, increase the feeling of well-being, and improve the quality of life parameters [16].

Resilience is a phenomenon that arises from humans’ natural adaptive responses, and despite facing serious threats, it empowers them to achieve success and overcome threats [17]. Resilience is a person’s ability and skill to adapt positively to stress or difficult conditions, such as chronic disease. Resilience refers to the ability to successfully adapt to challenging conditions in life [18]. This term is an important concept for understanding the adaptation process and learning adaptation methods in chronic disease sufferers. People with a high level of resilience are more likely to experience positive emotions in their lives, have higher self-confidence, and have better psychological conditions compared to those with a low level of resilience [19]. MS patients exhibit weak resilience in their social and family lives [20]. Research indicates that the resilience variable, as a dynamic process, makes people face stressful issues in life appropriately [21].

Many researchers are trying to study, evaluate, and develop interventions to control the problems of MS patients. The results indicate that methods such as energy conservation, exercise, behavioral interactions, and psychological interventions have a mutual relationship with the symptoms of MS [22]. Studies conducted by Rampello et al. [23] and Sutherland et al. [24] showed that the implementation of an educational program increased various aspects of the quality of life in MS patients. Researchers have concluded that, in addition to drug therapy and other common and modern medical and therapeutic facilities, self-care training can improve the quality of life [25]. Self-care includes a set of spontaneous activities that enable the patient to understand the conditions and factors affecting their health, make decisions to improve their health, and implement these decisions [26]. Self-care is the practice of using methods to control internal and external factors that affect an individual’s function, developmental processes, or well-being [27].

One of the reasons for re-hospitalizations for people with chronic diseases is a lack of knowledge on how to take care of themselves, and education can prevent this [28]. Considering various therapeutic interventions, including drug therapies and medical facilities, there remains a notable gap in addressing the well-being and adaptive resilience of MS patients, particularly in regions with high prevalence, such as Iran. Despite the importance of self-care behaviors in chronic disease and the outcomes of educational programs in enhancing quality of life in MS patients, there is still a lack of comprehensive studies investigating the impact of self-care education on both quality of life and resilience in this population. Addressing this gap is critical for optimizing the well-being of these patients and advancing the understanding of educational interventions to enhance their quality of life and resilience, among the challenges posed by this chronic condition. Considering that self-care training can increase the quality of life in patients, especially those with MS, this study aims to investigate the effect of training self-care behaviors on the quality of life and resilience of a group of MS patients in Shiraz, Iran.

Methods

Research design

The present quasi-experimental study was conducted on 90 MS patients. The Shiraz MS Patient Support Association provided a convenient sampling method for selecting these samples. Then, the participants were allocated randomly to two experimental and control groups (45 people for each group).

The criteria for people to enter the study included reading and writing literacy, communicating with the researcher, being between 15 and 50 years old, having symptoms of the disease, not being dependent on a wheelchair, not being in the acute stage of the disease, and having a history of the disease for 2–5 years.

Sample size and sampling method

The sample size was chosen based on the results of a previous similar study [29]. To determine the sample size for this study, we used the following formula for comparing two means (experimental and control groups):

$$\:n=\frac{{2({Z}_{\alpha\:/2}+{Z}_{\beta\:})}^{2}.{\sigma\:}^{2}}{{\left(d\right)}^{2}}$$

where:

n is the sample size required per group.

Zα/2 is the critical value of the standard normal distribution at 𝛼/2.

Zβ is the critical value of the standard normal distribution at 𝛽.

σ is the population standard deviation.

d is the effect size, the difference in means we want to detect.

According to the formula, we would need at least 63 participants per group. However, considering possible dropouts or non-compliance, we increased the sample size to 90 participants to ensure the robustness and reliability of the study results.

In this study, we employed a convenience sampling method to select participants. The convenience sampling was conducted through the Shiraz MS Patient Support Association, enabling the practical and efficient recruitment of MS patients. Participants were then randomly assigned to either the experimental or control group, with 45 participants in each group. This study employed convenience sampling due to practical time and resource constraints. The study was able to conduct within the available timeframe and budget thanks to the convenience sampling, which facilitated a quicker and more cost-effective recruiting process.

Convenience sampling may introduce selection bias, as the sample may not be representative of the broader population of MS patients. More accessible and willing participants may differ in important ways, affecting the study’s external validity. Additionally, the findings may not be generalizable to all patients, as the sample may not accurately reflect the diversity within the wider MS patient population in terms of demographic and clinical characteristics. Lastly, we should exercise caution when extrapolating these findings to the larger MS patient population, even though the results provide valuable insights.

Protocol

After the recruitment of the participants, the objectives of the research were explained to the participants, and written consent was obtained from them. Then, an educational program was implemented in the form of six sessions lasting six hours. The participants were asked to apply the training materials given at home. Two of the training recipients gave special training to the test group after the completion of six training sessions. The control group received only routine training. Participants in both groups completed the questionnaires again two months after the last session. Table 1 displays the educational content for the experimental group.

Questionnaires

The data collection tool included the following four questionnaires:

  1. 1)

    A questionnaire of demographic information, which included age, sex, marital status, education level, occupation, and previous medical history.

  2. 2)

    Self-care status standard questionnaire: This questionnaire has 12 questions, and its purpose is to evaluate the level of self-care skills and perform daily life activities. The questionnaire is based on a 4-point scale with a range of 0 to 36 points. Higher scores indicate a higher ability of the respondent in self-care situations and a higher ability to perform daily activities, and vice versa. In the study of Safavi et al., 10 professors of Tehran Azad University of Medical Sciences examined the Persian version of the questionnaire (content validity) and estimated its reliability with the participation of 10 MS patients using Cronbach’s alpha of 0.98 and a correlation coefficient of 0.68 [30].

  3. 3)

    MS patients’ quality of life questionnaire: This questionnaire contains 29 questions; the first 20 questions measure the physical impact, and the last 9 questions measure the psychological impact of MS on the patient. Each question contains five options (with a score of 1 to 5). The sum of the numbers related to the patient’s answers to these two groups of questions is converted into numbers from 0 to 100, and finally, two scales are obtained to measure the physical and psychological aspects of the quality of life. Higher scores indicate a poorer patient’s health. The maximum score in the physical dimension is 100 and the minimum is 20, and the maximum score in the psychological dimension is 45 and the minimum is 9 [30].

Hassanzadeh et al. evaluated the questionnaire’s validity and reliability in 2023. A panel of specialists (four internists, one epidemiologist, and one neurologist) was asked to rate each P-MSQOL-29 question on a 4-point ordinal Likert scale (completely relevant = 4, related = 3, slightly related = 2, and unrelated = 1) in terms of relevancy and clarity in order to determine content validity. Cronbach’s alpha was computed as 0.9 for the mental health composite and 0.7 for the physical health composite in order to assess internal consistency [31].

Connor and Davidson prepared the Connor-Davidson’s Resilience Questionnaire in the field of resilience in 2003. Researchers have investigated the psychometric properties of this scale in six groups: the general population, primary care patients, psychiatric outpatients, patients with generalized anxiety disorder, and two groups of post-traumatic stress patients. The creators of this scale assert that it can differentiate resilient individuals from non-resilient ones in both clinical and non-clinical contexts, making it a valuable tool for both research and clinical settings. A Likert scale, ranging from zero (completely false) to five (completely true), scores 25 items in this questionnaire [32].

Taghizadeh et al.‘s study determined the validity and reliability of the questionnaire. To determine the validity, first the correlation of each question with the total score of the questions was calculated, and then the factor analysis method was used. Calculating the correlation of each total score showed that, except for question 3, the coefficients were between 41% and 61%. In the factor analysis, the factor load of each question was calculated in relation to the whole question, and only question 3 was excluded from the final analysis due to the lower factor. Thus, 24 questions were used in the final analysis. Cronbach’s method was used to determine reliability, and the resulting reliability was equal to 52% [33]. In Samani et al.‘s research, the scale’s reliability with Cronbach’s alpha coefficient was 87% [34]. Previous studies have already utilized and published the questionnaires used in this study [30, 32, 33, 35].

Data analysis

The collected data were analyzed using SPSS 23, powered by Armonk, NY: IBM Corp. Descriptive statistics indicators (frequency, percentage, mean, and standard deviation) were used to describe the data, and inferential statistics (paired t-test and independent t-test) were also used to analyze the data. The significance level for all tests was considered to be less than 0.05.

Table 1 Educational content provided
Full size table

Results

The participant’s mean and standard deviation were 41.11 ± 8.40 years old. 50.4% of the patients participating in the study were male, 55.6% were married, 40% had a high school diploma, and 78.5% were unemployed (Table 2).

Table 2 Frequency distribution of demographic variables
Full size table

According to the results of the paired t-test, there was a notable difference in the self-care scores of the experimental group before and after the intervention (P < 0.05) (Table 3).

Table 3 Difference in self-care component before and after the intervention
Full size table

The results of the independent t-test among the variables (age, sex, married, education level, and employment status) showed that there was a significant difference between quality of life and patient resilience before and after the intervention in the experimental and control groups (P < 0.05) (Table 4).

Table 4 Association between resilience and quality of life of patients with demographic variables
Full size table

The results of the paired t-test showed that there was a significant difference between the quality of life and resilience of the participants compared to their initial scores after the intervention (P < 0.05) (Table 5).

Table 5 The quality of life and resilience of the patients before and after the intervention in both groups
Full size table

Discussion

The present study was conducted with the aim of investigating the effect of education in self-care behaviors on the quality of life and resilience of MS patients. The results showed significant improvement in the quality of life and resilience of MS patients in the experimental group after the intervention. This highlights the importance of tailored educational interventions in enhancing the well-being of individuals living with chronic conditions like MS. The structured program provided comprehensive information on disease management, symptom alleviation techniques, lifestyle modifications, and psychological support, all of which were crucial components in improving quality of life for MS patients. By equipping participants with knowledge and practical skills to manage their condition effectively, our intervention empowered them to take an active role in their healthcare, leading to enhanced quality of life outcomes.

Studies by Safavi et al. [30] and Madani et al. [32] also support the positive effects of self-care programs in patients with MS, though their methods and content differed from the current study. These studies confirm that self-care education can significantly improve various aspects of life for MS patients. Khodaveisi et al. [36] found that effective care models, like the continuous care model, positively impact the quality of life for MS patients, aligning with our findings. Other studies [37, 38] have similarly shown improvements in quality of life for MS patients through educational interventions.

Taghizadeh et al. [33] found that group spirituality therapy effectively increases resilience in women with MS, while Pakenham et al. [35] showed that resilience training programs are well accepted by MS patients with different socio-demographic and clinical characteristics. Mirhashmi et al. [39] and Ramezani et al. [40] also demonstrated the effectiveness of group therapy in increasing resilience among MS patients.

Currently, applications related to MS often fail to meet the comprehensive needs and wishes of patients. Therefore, the design of appropriate health applications to engage and interact with MS patients is crucial. Providing accessible resources, personalized support, and opportunities for active engagement can enhance patient outcomes and promote a sense of empowerment and autonomy.

The implications of these findings are particularly significant for regions such as the Middle East, West Asia, and other developing countries, where healthcare resources may be limited. In these areas, structured educational programs and interventions like the one studied can play a vital role in improving the quality of life and resilience of MS patients. These regions often face higher prevalence rates of MS, and tailored educational interventions can help bridge the gap in healthcare services. By implementing cost-effective and accessible self-care education programs, healthcare providers can empower patients to manage their conditions more effectively, leading to better health outcomes and overall well-being. Moreover, promoting resilience through structured interventions can help patients in these regions cope better with the psychological and social challenges posed by MS, enhancing their ability to lead more fulfilling lives despite the disease.

Strengths and limitations

One of the study’s strengths is its quasi-experimental approach, which facilitated the comparison of results between the two groups and increased the reliability of the findings. Moreover, utilizing validated questionnaires to evaluate self-care, quality of life, and resilience enhances the credibility of the findings. Furthermore, the organized educational intervention offered extensive knowledge and practical abilities to MS patients, including multiple aspects of their overall health and happiness.

One limitation of this study could be its dependence on convenient sampling, which could impact the relevance of the results to a broader population. The short follow-up period also constrains the assessment of long-term effects. In addition, the study did not evaluate any confounding factors, such as the severity of the disease, which could impact the results.

Conclusion

In conclusion, our study provided evidence for the effectiveness of a structured self-care educational program in enhancing the quality of life and resilience of MS patients. This significant improvement demonstrates the potential for empowering MS patients with knowledge and skills and supporting them in actively managing their condition. Our findings highlighted the nature of self-care, which encompasses various aspects of disease management, symptom alleviation, lifestyle adjustments, and psychological well-being. Furthermore, our study emphasizes the importance of patient-centered care in the management of chronic conditions like MS.

By prioritizing patient empowerment and involving them as active participants in their healthcare routines, we can cultivate a sense of self-efficacy and resilience among individuals struggling with the challenges of living with MS. According to our research, self-care education programs should be incorporated into routine MS treatment protocols in order to support patient autonomy, improve self-care abilities, and raise the general quality of life. We can build resilience, encourage psychological adjustment, and ultimately improve outcomes for people with MS by funding programs that give patients the power to take control of their health and well-being.

Suggestions

The findings of this study have significant clinical and practical implications for MS management and patient well-being. Firstly, the implementation of structured self-care educational programs can serve as a valuable adjunct to conventional medical treatments, offering MS patients the knowledge, skills, and support necessary to actively engage in their disease management. By empowering patients to control their health and well-being, such interventions can lead to improvements in quality of life and resilience, ultimately enhancing patient outcomes.

Practically, healthcare professionals should consider integrating self-care education into routine MS treatment protocols to support patient autonomy and improve overall quality of life. Furthermore, future studies in this field should explore the long-term effects of self-care interventions, assess the scalability and accessibility of such programs, and investigate the potential benefits of incorporating digital health technologies to enhance patient engagement and support.

Additionally, research could focus on tailoring self-care interventions to address specific needs and challenges faced by diverse populations of MS patients, thereby ensuring that strategies are effective and inclusive across different demographic and clinical contexts. Overall, prioritizing patient empowerment and self-management strategies can lead to more holistic and patient-centered approaches to MS care, ultimately improving outcomes and quality of life for individuals living with this chronic condition.

Data availability

The datasets used and/or analyzed during the current study are publicly available from the corresponding author on reasonable request.

Abbreviations

MS:

Multiple sclerosis

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Acknowledgements

This study approved by the Shiraz University of Medical Sciences. Our warm thanks go to the Research and Technology Dept. of Shiraz University of Medical Sciences, as well as Shiraz MS Patients for their participation in the study.

Funding

We did not receive any financial support.

Author information

Authors and Affiliations

  1. Nutrition Research Center, Department of Public Health, School of Health, Shiraz University of Medical Sciences, Shiraz, Iran

    Tayebeh Rakhshani & Ali Khani Jeihooni

  2. Department of Public Health, School of Health, Shiraz University of Medical Sciences, Shiraz, Iran

    Shohreh Afroozeh & Seyyed Mansour Kashfi

  3. Department of Community Medicine, School of Medicine, Fasa University of Medical Sciences, Fasa, Iran

    Amirhossein Kamyab

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  1. Tayebeh Rakhshani
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Contributions

AKHJ, SA, SMK, AK and TR assisted in conceptualization and design of the study, oversaw data collection, conducted data analysis and drafted the manuscript. AKHJ and SA conceptualized and designed the study, assisted in data analysis and reviewed the manuscript. AKHJ, SA, SMK, AK and TR assisted in study conceptualization and reviewed the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Ali Khani Jeihooni.

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Ethical approval and consent to participate

Ethical approval was obtained from the Human Research Ethics Committee at the Shiraz University of Medical Sciences (IR.SUMS.SCHEANUT.REC.1400.098). All study participants provided written informed consent. Permission was also obtained to digitally record all interview. Confidentiality and anonymity were ensured. All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration.

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Rakhshani, T., Afroozeh, S., Kashfi, S.M. et al. The effect of education of self-care behaviors on the quality of life and resilience of multiple sclerosis patients. BMC Neurol 24, 264 (2024). https://doiorg.publicaciones.saludcastillayleon.es/10.1186/s12883-024-03777-y

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  • DOI: https://doiorg.publicaciones.saludcastillayleon.es/10.1186/s12883-024-03777-y

Keywords

BMC Neurology

ISSN: 1471-2377

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