Experiences of persons with multiple sclerosis of a collaborative care programme: A qualitative study

Abstract Aim This study aimed to explain the experiences of individuals with multiple sclerosis (MS) about the collaborative care programme. Design This qualitative study was conducted from July 2021 to March 2022. Methods We conducted this study with individuals with MS who participated in the collaborative care programme in Hamadan, Iran. A purposive sampling with maximum variety was applied to recruit patients until data saturation. Eventually, 18 patients consented and were interviewed using a semi‐structured interview guide. The transcriptions of audio‐checked interviews were analysed using a conventional content analysis approach of Graneheim and Lundman by MAXQDA 10, 2010 edition. Results The study identified three main categories. that emerged from the participants' experiences of collaborative care: the ‘Beginning of Communication’, which included two subcategories, ‘Introduction and Acquaintance with Each Other’ and ‘Formation of Trust’; ‘Mutual Interaction’, which included three subcategories, ‘Dialogue’, ‘Mutual Goal Setting’ and ‘Mutual Agreement of Care Solutions’; and ‘Exchange of Targeted Behaviors’, which included six categories, Implementation of Strategies for ‘Nutritional Behaviors’, ‘Sleep and Rest’, ‘Constipation Relief’, ‘Promotion of Physical Activity and Exercise’, ‘Fatigue Reduction’ and ‘Stress Management’. Conclusions The findings highlight the statistically significant role of collaborative care in MS management. Utilizing these research findings can update the development of interventions based on collaborative care, which can provide appropriate support to individuals with MS. Patient or public contribution Individuals with multiple sclerosis.


| INTRODUC TI ON
Multiple sclerosis (MS) is an autoimmune condition with acute and chronic inflammatory lesions in the central nervous system (CNS), leading to tissue damage and disability of the affected person (Koch-Henriksen & Magyari, 2021). Currently, 2.8 million people worldwide are diagnosed with MS, and its prevalence has increased in recent years (Kassie et al., 2021;Walton et al., 2020). The MS prevalence in Iran is about 5.3 to 89 per 100,000 people, and its incidence rate is 7 to 1.148 per 100,000 people (Azami et al., 2019). There are 2000 MS patients in Hamadan province, which is high compared with the province population and shows that Hamadan is one of the most prolific provinces in terms of the prevalence of this disease (Ghiasian, 2019).
The disease is associated with the involvement of different parts of the central nervous system. Therefore, individuals' symptoms can vary from benign condition to rapidly progressive and debilitating disease that requires extensive lifestyle adaptation (Harrison & AS, 2004). The problems caused by the disease can affect patients' lives and cause disturbances in activities related to wellness, thereby leading to secondary health consequences, the loss of individual independence and the reduction in the capacity to perform daily living activities (Dehghani et al., 2019).
Factors such as fatigue, receiving medication (Farran et al., 2020), disturbed role performance related to physical health problems (Heidari Sureshjani et al., 2012), and physical restrictions in one or more fields decline the quality of life (QOL) among individuals with MS (Buzaid et al., 2013). Active participation of the patient in the care process in chronic conditions such as MS is associated with positive health-related outcomes (Payamani et al., 2020), and collaboratively management is intended for this disease (Rahimi-Bashar et al., 2020).
Collaborative care is a systematic and rational process of establishing practical, interactive and dynamic communication between the client and the healthcare providers. This process leads to a greater understanding and recognition of needs and health issues to control the disease. Accordingly, it motivates and involves the client to accept responsibility and be an active healthcare team member to improve wellness (Mohammadi et al., 2002). Although patient engagement, involvement and participation have semantic differences and similarities, from a nursing perspective, these concepts reflect the process of collaborative care, which involves mutual participation between the patient and nurse. To make this process unique, interactive actions are required from both parties, including asking questions, sharing information, acquiring knowledge, making decisions and teaching for patients, and diagnosing, responding, sharing information, teaching and collaborating for nurses (Jerofke-Owen et al., 2023).
One of the theories related to collaborative care is King's theory of goal attainment. The central concept of this theory is collaborative care which emphasizes the patient's participation in decisions such as determining and agreeing on self-care goals, prioritizing goals, agreeing with methods to achieve goals and understanding the patient's direction. In this regard, determining the degree of goal attainment is highly emphasized (Fawcett & Desanto-Madeya, 2012).
Based on King's theory, nurses can recognize the patient's understanding by establishing interaction and reaching a joint agreement to determine the mutual goals of self-care, prioritizing goals and methods of achieving goals (King, 2007). By involving patients in goal setting, nurses allow them to make decisions for their health and express their perceptions of illness, related health problems, experiences and tensions (Adib-Hajbaghery & Tahmouresi, 2018).
Creating and fostering a two-way nurse-patient relationship encourages clients to participate in counselling sessions and express their experiences and feelings (Nasab et al., 2017). This approach is strongly recommended to acknowledge the positive effects of collaborative care in improving the quality of care for chronic diseases (Rahimi-Bashar et al., 2020). The results of some studies in mutual collaborative care in the management of chronic diseases indicate that this approach is a necessary element to promote the client's trust in healthcare providers and ultimately improve the health outcomes, QoL and satisfaction of the affected (Rahimi-Bashar et al., 2020;Shamsi et al., 2017), and reduces nurses' workload (Chan et al., 2018).
Although collaborative care has been acknowledged as an effective method for managing chronic disorders, there has been a lack of qualitative research exploring patient experiences and perceptions of collaborative care. The purpose of conducting this study was to fill a gap in the existing literature regarding the perceptions of individuals with MS who receive collaborative care. Understanding the experiences of individuals with MS who receive collaborative care can inform the development and implementation of more patientcentred care approaches.

| Design
This qualitative study with a conventional content analysis approach was undertaken after a quantitative study to implement collaborative care for people with multiple sclerosis (MS). The study period was from July 2021 to March 2022.

| Sample and setting
The research population consisted of individuals with MS who participated in the collaborative care programme at the Neshat Rehabilitation Center in Hamadan, Iran. Inclusion criteria were an age range of 20-50 years, confirmation of the disease by a neurologist, at least 6 months passed since diagnosis, and suffering from relapsing-remitting MS. To assess patients' orientation to time, person and place, they were asked to repeat their full name, present location and the current date. Purposive sampling with maximum diversity was used to recruit patients until data saturation was achieved. Maximum variation was ensured based on the participants' demographic characteristics and interventional study results. None of the participants were excluded. Sampling continued until data saturation, which occurred after the fifteenth interview.
Additionally, three more interviews were conducted to ensure sampling adequacy.

| Data collection
The quantitative study results were utilized as a guide for the subsequent qualitative phase, which involved conducting interviews using a conventional content analysis approach. The interviews were designed by research team and conducted by a Nursing Ph.D. candidate, who invited participants either in person or by phone at the Rehabilitation Center. The participants were provided with detailed information about the study and informed consent for audio recording was obtained. To confirm the suitability of the semi-structured interview guide, the research team assessed the initial interviews.
The primary questions of the interview were shown in Table 1.
During the interviews, follow-up and exploratory questions such as 'Please elaborate on this?' and 'What do you mean?' were used based on participants' responses. The interviews were scheduled in advance and conducted in a private room within the community building. Each participant was interviewed individually in a face-toface setting. The duration of the interviews ranged from 30 to 60 min based on the physical condition and willingness of the participants, with descriptive notes taken to supplement the findings. The theoretical saturation of the categories in the study was reached after the 15th interview, with an additional three interviews conducted to ensure adequate sampling.
Firstly, the text was transcribed instantly after each interview.
Secondly, the interview transcript was reread to gain a general insight. Thirdly, each interview's entire transcript was considered a unit of analysis, with meaningful units specified and coded in the fourth step. Based on the continuous comparison of similarities, differences and appropriateness, codes with a single topic were merged into one subcategory, and then, the subcategories were put into categories. Finally, by comparing the subcategories and categories and conducting deep and detailed reflection, the content embedded in the data was introduced under the title of main classes.
The data were analysed in MAXQDA 10, 2010 edition.

| Validity and reliability
To ensure the trustworthiness of the research, Guba and Lincoln's proposed criteria were employed (Hsieh & Shannon, 2005). The researchers aimed to enhance credibility by adopting long-term involvement throughout the research, effectively interacting with the participants to verify the accuracy of the information and coding. Reflexivity was employed to prevent potential biases in the findings. As such, the researcher documented their feelings and experiences in a daily notebook at the beginning and during the research process, enabling them to understand the participants' experiences without influencing their assumptions. The dependability was improved by repeating the steps of data collection and analysis and seeking input from colleagues and experts. Colleague approval and additional comments were used to increase the conformability of the data. To promote transferability, the research report provided a detailed description of the study, enabling evaluation of the research's applicability in other domains.

| Ethics
The Hamadan University of Medical Sciences and Health Services approved the study proposal with the number 9910096961. Also, the proposal was approved by the Ethics Committee with the number IR.UMSHA.REC.1399.773. Verbal and written informed consent was obtained from the participants before the study's start and the interviews' recording. Participants were free to voluntarily participate in or withdraw from the study and were assured that the information would be kept confidential. The first researcher allowed participants to call or text them via WhatsApp Messenger if they had questions or needed information.

| RE SULTS
The mean age of participants was 36.94 ± 9.27 years and with an average illness duration of 8.08 ± 5.57 years, and other demographic information of the participants is summarized in Table 2.

No
Interview guide questions Following analysis of the interview data, 375 initial codes were extracted, which were subsequently merged due to semantic similarities, resulting in 92 codes. The participants experienced collaborative care as a continuous, systematic, and logical process that involved three categories: 'initiation of communication', 'mutual interaction', and 'exchange of targeted behaviors' (Table 3).

| Category 2-Mutual interaction
This class involved a mutual and purposeful interaction between the nurse and the patient. Establishing effective communication and interaction between the two parties facilitated decision-making and increased the patient's involvement in the care process. This TA B L E 2 Demographic characteristics of the participants.

| Category 3-Exchange of targeted behaviours
The third class extracted from the collaborative care process was the 'Exchange of Targeted Behaviors', which involved meaningful interactions between patients and nurses aimed at achieving selfcare goals. Effective interaction occurred when both parties shared similar goals and engaged in purposeful behaviours to achieve them.
During the exchange, patients effectively performed their roles.

| DISCUSS ION
The objective of this study was to explore the experiences of individuals with MS who participated in a collaborative care programme.
The findings revealed that the participants perceived collaborative care as three interrelated processes: 'Initiation of Communication', 'Mutual Interaction' and 'Targeted Behavior Exchange'.
Our findings on collaborative care align with previous research suggesting that patient participation in decision-making and treatment implementation can lead to better healthcare services (Dobscha et al., 2009;Ebrahimi et al., 2017) increased selfsufficiency in self-care, and improved motivation, responsibility and participation in treatment, ultimately resulting in higher quality care (Alidina et al., 2021;Foroutani et al., 2014;Rakhshan et al., 2018).  Iran revealed that 80% of patients hospitalized in the burn department did not know their nurses, and nurses were only present during medicine administration and dressing. The study also identified a statistically significant correlation between nurse-patient communication and patient satisfaction (Lotfi et al., 2019).

| The beginning of communication
Our study suggests that effective interaction between nurses and patients begins with the nurse's acquaintance with the patient and trust establishment. In different cultures, the nurse-patient connection and trust are the foundation of nursing communication and patient-centred care (Minton et al., 2022). The introduction process of nurses to patients (Guest, 2016) and trust form the foundations of the therapeutic nurse-patient relationship (Allande-Cussó et al., 2022). Trust is developed over time during ongoing nursepatient interactions and can be strengthened or diminished. Once gained, patient trust in the nurse must be maintained, as it is a fragile element that is not easily regained once lost (Rajcan et al., 2020).
From the patient's perspective, the nurses' personal and professional characteristics are essential in trust development. Conversely, mistreatment, professional incapability and communication problems are contributors to mistrust (Ozaras & Abaan, 2018). A systematic review of patients' experiences revealed that knowledge and commitment in nurses are associated with promoting trust (Rørtveit et al., 2015). In a review study, it was found that nurses and patients who established trust had better adaptability and cooperation to improve health. They also expressed a sense of security and a desire to participate more confidently (Leslie & Lonneman, 2016). As a result, nurses can initiate a patient-centred approach by introducing themselves and building trust. Additional researches are needed to further explore the process of 'Beginning of Communication'. Investigating this process can help to identify effective approaches to building trust and rapport between nurses and patients, ultimately improving the quality of care provided to individuals with chronic illnesses.

| Mutual interaction
In our study, mutual interaction involved a shared and purposeful collaboration between the nurse and the patient. Establishing effective nurse-patient communication facilitated the patient's involvement in the decision-making. Mutual interaction between nurse and patient provides care and improves health outcomes, empowerment and security (Allande-Cussó et al., 2022). The collaborative approach between the healthcare system, patients and families, and their social system requires mutual and interactive cooperation (Costa et al., 2022). Effective mutual communication between patients and healthcare providers is crucial for patient care and recovery (Kwame & Petrucka, 2021).
Collaborative care involves a continuous process of mutual interaction through nurse-patient 'dialogue', 'mutual goal-setting' and 'mutual agreement on care solutions'. In clinical nursing, many practices such as patient assessment, education and counselling are dialogue-based (Crawford et al., 2017). Nursing is a live dialogue and an intersubjective exchange where nurses and patients engage in friendly communication to present their experiences (O'Connor, 1992). A respectful open dialogue between the patient and care provider is crucial in recognizing needs, promoting positive care outcomes, and understanding the quality of care (Kwame & Petrucka, 2021). The dialogical approach of nurses can reduce patients' reluctance and open their minds to accept care advice (Wesseldijk-Elferink et al., 2021). Nurse-patient dialogue can prepare patients with enough information about mutual goal setting and effective participation in the decision-making process. Nurses' role in providing patient readiness improves the mutual goal-setting process for patients (Vaalburg et al., 2021). Our results support mutual goal setting in the collaborative care process, leading to later joint agreement on care solutions and strategies. Nurses typically write and document a patient care plan based on their professional experience and knowledge, which can be seen as a violation of person-centred care, as the nurse ignores the patient's resistance and avoids shared status. In collaborative care, care strategies should be developed by the professional and the patient together, with both taking the initiative in the actual writing (Forsgren & Björkman, 2021). However, communication with patient and mutual decision-making are two critical factors in patients' adherence with treatment. As a result, the stronger the communication and the more patients participate in their treatment decisions, the greater their adherence with treatment will be (Yu et al., 2022).
Further studies are needed to explore the concept of mutual interaction, which involves shared and purposeful collaboration between the nurse and the patient.

| Exchange of targeted behaviours
The collaborative care process for individuals with MS involves the

| Limitations of the study
While our study is the first to explore the experiences of individuals with MS participating in collaborative nursing care, it has some limitations. The small number of participants in our initial quantitative study resulted in a limited sample size for this qualitative study. As a result, the generalizability of our findings may be limited to only comparable settings. Additionally, the findings may be influenced by cultural and community differences, despite the researchers' efforts to select participants from a diverse range of backgrounds. Further studies are needed to design, implement and evaluate collaborative care programmes for patients with MS and other chronic diseases.

CO N FLI C T O F I NTE R E S T S TATE M E NT
The researchers declare that there was no conflict of interest in the process of implementation, extraction and report of the findings of the present study.

DATA AVA I L A B I L I T Y S TAT E M E N T
Data openly available in a public repository that issues datasets with