Publication
Theme Article
Background: As they age, people with multiple sclerosis (MS) experience age-related functional decline earlier than people without MS. This qualitative study aimed to explore the trajectory of healthy aging from the perspective of people with MS.
Methods: Grounded theory methodology was employed in this study. A purposive sample of 10 people with MS 50 years or older was recruited from an MS clinic in the north of Iran. Data were collected through 15 semistructured interviews and analyzed using initial coding, focused coding, and constant comparison.
Results: Participants described how they focus on maintaining physical function by developing physical capability. They considered healthy aging with MS as maintaining current function and experiencing less functional decline in later life. Most expected to experience further dysfunctions as age-related declines are superimposed on MS-related disabilities. Consequently, they are developing their physical capacity through a healthy lifestyle to maintain residual abilities while aging with MS.
Conclusions: The findings of this study reveal that people aging with MS maintain functional ability by developing capability through a healthy lifestyle across the life course. They suggest that the interaction between age- and MS-related dysfunction should be taken into consideration to foster healthy aging in people with MS.
From the Student Research Committee (NAM), the Social Determinants of Health Research Center (MKK, FR), the Research Institute for Prevention of Noncommunicable Diseases (MKK, FR), the Faculty of Medicine (HM), Qazvin University of Medical Sciences, Qazvin, Iran. Correspondence: Maryam Keramat Kar, PhD, Qazvin University of Medical Sciences, Shahid Bahonar Boulevard, Qazvin 59811-34197, Iran; email: mkeramatkar@qums.ac.ir.
Multiple sclerosis (MS) is considered a growing global disease,1 affecting 2.9 million people around the world.2 An MS diagnosis reduces life expectancy by
7 years; however, the majority of people with MS live a relatively normal lifespan.3 Recent advances in MS management have improved survival,4 so life expectancy has increased significantly for people with MS.5 The incidence of MS has also shifted to older age in recent years4,6; consequently, the population of people aging with MS is growing.7
People with MS experience changes in physical function at an early age, which leads to accelerated aging.8 Findings from a recent longitudinal study showed that age-related decline in physical function is accelerated by 15 to 30 years in middle-aged people with MS compared with people without.9 Consequently, people with MS experience age-related challenges10 and frailty earlier than the general population.11 These early experiences of aging may prepare people with MS to adjust to age-related changes earlier than people without.12,13
Aging with MS has both direct and indirect effects on physical function, including the loss of mobility, physical activities,14 and cognitive functions.15 Findings of other studies have shown that the level and rate of physical activity in older people with MS are lower than those of middle-aged and younger people living with MS.16 Declines in motor function also increase as people with MS age.17 Consequently, both aging and MS are characterized by loss of function, which makes aging with MS complex and compounding.18 Further, the symptoms of MS can be compounded by age-related changes.19 Therefore, aging people with MS experience 2 separate, interactive progressive conditions,7 which may result in a different aging trajectory.18
Research on aging with MS has shown that people aging with MS face physical dysfunction,5,7,20 socioeconomic decline,21 and functional limitations.22 Other study findings have also revealed both age- and MS-related differences between younger and older people with MS.23 These quantitative studies have mainly focused on the impact of MS on aging, but little is known about how people with MS experience healthy aging.
Healthy aging is a heterogeneous process, as functional ability and capacity in people decline at different rates over time,24 particularly in those with chronic conditions.25 The World Health Organization (WHO) declared 2020-2030 the decade of healthy aging and published a baseline report. This report recommends exploring healthy aging from the perspective of people with disabilities. Focusing on the experience of healthy aging in older people with disabilities could help us understand health concerns, needs, and preferences required for providing person-centered integrated health care.26
Qualitative research on aging with MS has explored the perspectives of older people on living with MS,13 their lived experience of aging,18,27 and their adaptation to aging with MS.12 These studies have described the dysfunctions they experience in their daily and social lives. A few qualitative studies have also explored factors contributing to healthy aging28,29 and aging well30 from the perspective of people with MS. People with MS experience different and distinct pathways of aging with disability developed in a complex manner across the lifespan,31 making it essential to understand what they experience in the context of their everyday lives.32,33 This study aimed to explore the trajectory of healthy aging from the perspective of people with MS.
Grounded theory is used to discover the core pattern of the life cycle.34 In this study, sampling, data collection, and analysis were conducted using the constructivist grounded theory developed by Kathy Charmaz. This grounded theory approach combines the fluidity and open-endedness of the Straussian version with specific strategies for data analysis from the Glaserian approach.35 It also resolves criticisms about earlier grounded theory approaches by being more interpretive and emergent and less prescriptive and procedural.36
The study received approval from the Qazvin University of Medical Sciences Research Ethics Committee (IR.QUMS.REC.1400.126). All participants provided informed consent.
Participants
A purposive sample of 10 people with MS took part in the study. Purposive sampling involves selecting participants who experience the phenomenon under investigation37 to provide rich and in-depth data.38 In this sampling, participants are considered the source of knowledge and expertise, as they live through the phenomenon under investigation.39 Participants who met the following criteria were included in the study: age of 50 years or older, diagnosed with MS for at least 5 years, in remission, mild to moderate disability using the Expanded Disability Status Scale (EDSS score ≤ 6), and the cognitive capacity to engage in the interview. Those with drug misuse, psychiatric disorders, an acute disease (eg, influenza), or MS exacerbations were excluded from the study.
Participants were recruited through the MS clinic at a teaching hospital in Qazvin in the north of Iran. Potential participants were identified by reviewing medical records, and then a researcher (N.A.M.) contacted potential participants to invite them to take part. A total of 28 eligible participants were contacted. Of these, 10 people were excluded because 5 had moved from the city and 5 lived in rural areas more than 1 hour from the study location. Eight people declined to participate.
Data Collection
Data were collected through semistructured interviews that focused on the participants’ perspectives about aging with MS. An interview guide covering healthy aging with MS was developed based on the existing literature on healthy aging and aging with MS, particularly the WHO’s Decade of Healthy Ageing: Baseline Report.26 The guide consisted of open-ended questions: What would you do for aging people with MS? How would you change your daily functions and social life so that you could age like people without MS? Probing questions were used for further clarification.
A researcher (N.A.M.) conducted all interviews with participants over 3 months from April 2021 to July 2021. Interviews were scheduled at an appropriate time and place based on participants’ preferences. All sessions took place in a quiet, private, and comfortable place, either the investigator’s office at the university or the participants’ home. Each interview lasted approximately 30 to 60 minutes, and all were recorded via audio.
As the study proceeded, some participants were selected through theoretical sampling to collect additional data about emerging themes developed in preliminary codes and categories.36 Two strategies were used to sample theoretically: interviewing informant participants more than once and focusing on the emergent categories during the interview with newly selected participants. Therefore, participants who provided rich information on aging with MS during the interview were selected as informants for the subsequent interview session. Consequently, 5 people were interviewed twice. Theoretical sampling continued until no new properties for categories on aging with MS emerged. These categories were saturated with the data, which were found through reading and reviewing codes and categories. After 15 interviews, emerging themes were saturated with data.
Data Analysis
According to the constructivist approach, data were analyzed in 2 phases: preliminary and final. Preliminary analysis was conducted through initial coding by N.A.M. of the recorded interviews during data collection, producing a list of codes and categories for each participant. She then transcribed the recorded interviews word for word and checked the accuracy of the transcripts by listening to the interviews and reading the transcripts. Some errors were corrected. Another researcher (M.K.K.) read each participant’s transcript and coded line by line to categorize and summarize. The codes were written in the margins of the transcripts and then added to the list of codes created for each participant during initial coding.
Final analysis was conducted through focused and theoretical coding and constant comparison. During focused coding, more significant or frequent initial codes were selected and grouped into categories. Throughout data analysis, constant comparison was carried out for codes to codes, codes to categories, and categories to categories to explore similarities and differences within and across participants in the trajectory of healthy aging.
A number of techniques were employed to ensure study accuracy, including maximum variation in sampling, peer check, and member check. People with various individual and clinical characteristics were included in the study to demonstrate diversity in aging with MS. For member check, a copy of their transcript and the preliminary findings were sent to the participants to read and comment on the interpretation of data. Feedback was also obtained from the participants either after the interview or in the following interview session. Peer checks enhanced the credibility of the findings. The process of analysis was monitored through regular meetings with the research team to discuss codes and categories over the preliminary and final analyses. All members of the research team provided input on emerging findings, and codes and categories were also reviewed and compared with the transcripts.
Participants' Characteristics
The mean age of the participants was 52.4 (SD, 3.2) years, with a range of 50 to 58 years. Four participants were women and 6 were men. All participants were married and lived with their families. All participants had remitting-relapsing MS. The duration of illness ranged from 5 to18 years, and the mean time since diagnosis was 11.2 years. The mean EDSS score was 3.65 (SD, 1.1), with a range of 2.0 to 5.5 indicating that most participants were ambulatory with or without assistance. Table 1 presents the demographic characteristics of the participants.
Table 1. Demographic Characteristics of Study Participants
Trajectory of Healthy Aging With MS
Participants described the phases representing the trajectory of healthy aging: declining physical function, maintaining physical capability, and developing physical capability. Table 2 presents the codes and categories of healthy aging that emerged from the analysis.
Table 2. Categories, Codes, and Quotes From Data Collection
Decline in Physical Function
From participants’ perspectives, living with MS makes aging different. Participant 8 stated, “Living [with MS] is not usual. When someone gets an illness, it makes life different. Getting older with such a special disease [disability] is different from those without any illness. This is a fact.” Most participants thought about the consequences of getting older with MS and living with disability only later in their lives. They said that aging with MS was unavoidable. Participant 5 emphasized this, saying, “If I didn’t have MS, I would be less likely to think about getting older. But now these thoughts bother my mind: I am getting older with MS and face lots of disabilities and keep thinking about being disabled in life and becoming more disabled.”
Most participants considered age-related decline combined with MS-related disability in older age. They believed that dysfunction would be greater as they aged with MS and were concerned about losing independence and mobility due to worsening symptoms and further disabilities. Participant 3 stated, “I’m scared that my legs don’t work well. Now, I do stuff at home, but I’m really scared that I [will not be able to] get up and do my stuff (ie, household and self-care) when I get older.” Participant 10 was also concerned about living with further disabilities in older age, saying, “I just say I wish I were not disabled and [could] always [stand] on my own [2] feet as I get older with MS.”
Most participants worried about the possible impact of further disability from aging with MS on themselves and their families, such as losing dignity and status in the family and being a burden. Participant 5 said, “I have this problem [ie, MS], and aging problems will also be added in the future.… My children may not take care of me. It’s making trouble in my family life. I think about such issues, and I’m also concerned about losing [my] dignity. So, they [my family] may not respect me, and I lose my [status]. You know, everyone gets tired of doing the same for a patient.”
Maintaining Physical Capability
Participants thought about how to manage future dysfunction and disability while aging with MS. Participant 2 emphasized this, saying, “I think so much [about getting older with MS] and I’m getting older with this disease and what can I do in life [about the disease]?” Most participants wanted to continue their current daily life activities. Participant 4 stated, “If I were in this state [current functional status], it would be great. Now, I can go everywhere and do my own stuff and personal hygiene.” Participants thought that aging without MS meant having less disability and having greater capability in physical functions, essentially more independence and less dependence. Participant 9 stated, “I just said I wish I would not be in this state [dependent], and I would do my own stuff as long as I can.”
Developing Physical Capability
Participants thought about maintaining their current physical state and level of activity. Consequently, they wanted to develop their capacity in order to maintain their abilities as they aged with MS. Participant 5 stated, “Over time, since it [MS] is a specific disease, individuals need to change their lifestyle. Nothing else can be done. The process of living is changing. It is clear that life is not like [that of] a healthy person. Over time, doing daily stuff is hard and cannot be done as before.”
Most participants actively engaged in a healthy lifestyle in order to enhance their physical ability to be independent and do daily activities, and this was core to healthy aging with MS. They managed physical decline in aging with MS by engaging in a healthy lifestyle. Participant 6 stated, “Well, I have to think about it [getting older with MS]. When a person is getting older and has a disease, it is necessary to plan in advance. It isn’t a minor illness that can be dealt with easily. You have to think about it and make decisions for the future. Now, I pay more attention to my diet, physical activity, stress, and routines. I try to be under less stress because of MS.”
Healthy Lifestyle While Aging With MS
The majority of participants made attempts to stay as healthy as possible by changing their lifestyles. Participant 6 said, “As it is a special disease, we should change [our] lifestyle consciously. [The way we live] should be changed. It is not a healthy person’s life, as doing daily activities gets harder and cannot be done as before. But I try to do as much as I can.”
Participants considered a healthy lifestyle essential. From their perspective, if it is good for MS, it is good for aging with MS. Participant 7 said, “Changing [your] lifestyle may decrease MS progression and make life better…. I try to do the exercise and do the stuff that I can. It may make me stronger to deal with the disabling symptoms in the future.”
Most said that they continue daily activities and remain active despite MS dysfunction. They believe that maintaining current physical function will help them experience less dysfunction as they age. They performed regular exercise such as walking, home exercises, and going to the gym. Participant 4 said, “I do the exercise. I try to have a healthy diet. I go walking and keep going walking despite the fact that I quickly get tired and have to rest.” Participant 10 said much the same: “I use a treadmill at home. I also go shopping as long as I can. I go walking to do my own stuff.”
Healing Lifestyle While Aging With MS
Most participants emphasized remaining positive and actively engaging with family and social events. They paid more attention to their mood and feeling less stressed in daily life. They believed that such states may decrease the rate of progression of MS and help them experience aging like healthy people. Participant 6 expressed, “I go to happy events like weddings, birthday parties…and the like…which makes me feel better. I don’t like to go to funerals and visit relatives at hospitals. It makes me upset, and it is not good for MS.”
Participants said that they chose to engage in social and family relationships more consciously than in the past, continuing or discontinuing any relationship based on its stress level. Participant 7 said, “I used to have relationships with all my family members and friends, even those who hurt me. Now, I [interact] with them as little as possible. In fact, I get away from those who make trouble. I prefer to have a relationship with someone who understands me and talks about good things rather than bad ones. I go to see relatives who make me feel well. I invite family and friends who make me feel happy.”
Most participants emphasized being under less stress in daily life to help them experience less physical decline in aging with MS. They believed that they need to avoid unnecessary stress while living and aging with MS. They also thought a peaceful life would help them age better with MS. Participant 4 expressed, “It is 100% effective to have peace. MS and being up and down make life stressful, and stress is not good at all for both MS [and aging].”
Participants also engaged in activities such as yoga, massage therapy, and spiritual practices to manage both age- and MS-related physical decline. They employed these strategies to maintain good-temperedness to overcome concerns about aging with MS. Participant 8 said, “I try to engage with something like gardening…because if I get involved with these preoccupations [ie, aging with MS], it may make the pain worse and I will lose my temper. But if we engage in such activities, we may distract [ourselves] from [these stressful thoughts and feelings] through these activities.”
This study explored the trajectory of healthy aging from the perspective of people living with MS. Analysis of the data revealed that people aging with MS emphasized maintaining physical function through developing physical capability. Participants also considered further disability while aging with MS, so they planned ahead to manage future physical dysfunction.
Participants of this study considered healthy aging with MS to be maintaining current function and experiencing less functional decline in later life. This pattern of aging with MS seems consistent with a low-stable healthy aging trajectory, meaning a low functional level at baseline with a slow decline over time, which is reported in both healthy people and those with chronic conditions.40 However, this trajectory of healthy aging is more common in people with chronic conditions compared with healthy ones.25
Participants in this study believed that MS-related dysfunction, along with age-related decline, would result in a significant loss of physical function. Findings from a study on the functional trajectory of people aging with MS showed higher functional limitations in older people with MS.22 The findings of some qualitative studies have also revealed that people aging with MS were concerned about further loss of physical function,18,31 particularly related to independence and mobility.10,13 They believed that their level of independence and mobility indicated their adaptation to aging with MS12 and that maintaining independence was critical for healthy aging.28
Study participants also thought that an enhanced physical capacity would enable them to live independently. They engaged in a healthy lifestyle with a healthy diet and physical activity to manage existing and upcoming functional decline. Consistent with the results of this study, findings from a study on aging with MS showed that older people with MS engage in healthy behaviors such as physical activity more than the general population,41 as a healthy lifestyle, particularly in terms of physical activity, has been found to affect disability level in aging with MS.42
The findings of other studies have also shown that older people use lifestyle as an effective strategy for healthy aging with MS and for living well with MS, including diet and exercise.20,28-30 They also employed strategies to stay healthy in order to reduce disability progression.43
Participants in this study valued maintaining physical function as they aged, similar to another study’s results, which found that people aging with MS consider health as their ability to function in daily life.44This is in line with the capability approach, where well-being at older ages is understood as comprising opportunities (capability) and achievements (functioning) that people aging with MS value. This was found to be an essential part of aging with a disability.45,46 Consistent with this approach, findings from this study indicate that participants valued maintaining physical function. Consequently, they tried to develop their physical capabilities through lifestyle changes.
This study’s findings also indicate that people with MS consider healthy aging to be maintaining physical function in daily life, particularly mobility. Consistent with that finding, findings from a qualitative study also showed that aging well with MS was attributed to the ability to do daily activities.30 According to the findings of this study, people aging with MS develop physical capability to maintain this ability in later life. These findings are consistent with the WHO approach to healthy aging (optimizing functional ability) and its definition of healthy aging (the process of developing and maintaining functional ability).24,26 However, our findings showed that an awareness of the combination of age- and MS-related dysfunction persuaded people with MS to develop the physical capability to function in later life, contrary to the WHO approach of healthy aging, in which the interaction between internal capacity and environment determines functional ability.26
People with MS mainly considered physical capacity in healthy aging, with less emphasis on cognitive function, whereas functional ability reflects both physical and mental capacities based on the WHO healthy aging approach.24,26 Our findings could be related to the differential effects of aging on motor and cognitive functions in MS.47 Another study’s findings show that the interaction between MS and aging affects motor function but not cognitive function, putting
older people with MS at a higher risk of disability than
cognitive decline.17
Our study findings indicate that people aging with MS maintain and develop healthy social and family relationships, prioritizing those relationships that cause them less stress. In a study on healthy aging, social connection was found to determine healthy aging from the perspective of older people with MS.29 Another qualitative study’s findings also showed that relationships with others and the quality of those relationships contributed to well-being from the perspective of people aging with MS. Participants perceived that the energy and contributions of positive people influenced aging well with MS.30
One of the strengths of this study is that it provides insight into healthy aging from a lifespan perspective. Developing capacity in adulthood can help people attain and maintain health potential for aging.26 Another strength of this study is its exploration of healthy aging from the perspective of those living with a disability, which incorporates diversity.
There are some limitations to this study. It was conducted on people aging with MS who were ambulatory and community dwelling. Participants’ clinical demographics should also be taken into consideration, as people in remission and the middle stage of MS took part in the study. Future research could explore healthy aging in people in the exacerbation and/or advanced stage of MS. Considering the number of participants in this study, investigating healthy aging in a larger sample that includes more women could be productive.
This study has captured the trajectory of healthy aging from the perspective of people aging with MS. The results of this study indicate that people expect further dysfunction as they experience both age-related declines and MS-related disability. Participants tried to maintain functional ability by developing physical capability with a healthy lifestyle throughout their lives. We suggest that the capability approach be taken into consideration for the growing population of people aging with disability.
Acknowledgments: This study is from a master’s thesis in geriatric nursing, with approval from Qazvin University of Medical Sciences. We are grateful to the people with MS who participated in this study.
Financial Disclosures: The authors have no conflicts of interest
to declare.
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