Disability and Rehabilitation
ISSN: 0963-8288 (Print) 1464-5165 (Online) Journal homepage: http://www.tandfonline.com/loi/idre20
Bouncing back again, and again: a qualitative study of resilience in people with multiple sclerosis Arielle M. Silverman, Aimee M. Verrall, Kevin N. Alschuler, Amanda E. Smith & Dawn M. Ehde To cite this article: Arielle M. Silverman, Aimee M. Verrall, Kevin N. Alschuler, Amanda E. Smith & Dawn M. Ehde (2016): Bouncing back again, and again: a qualitative study of resilience in people with multiple sclerosis, Disability and Rehabilitation, DOI: 10.3109/09638288.2016.1138556 To link to this article: http://dx.doi.org/10.3109/09638288.2016.1138556
Published online: 15 Feb 2016.
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Date: 13 May 2016, At: 18:43
DISABILITY AND REHABILITATION, 2016 http://dx.doi.org/10.3109/09638288.2016.1138556
RESEARCH PAPER
Bouncing back again, and again: a qualitative study of resilience in people with multiple sclerosis Arielle M. Silvermana, Aimee M. Verralla, Kevin N. Alschulera,b, Amanda E. Smitha and Dawn M. Ehdea
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a Department of Rehabilitation Medicine, University of Washington School of Medicine, Seattle, WA, USA; bDepartment of Neurology, University of Washington School of Medicine, Seattle, WA, USA
ABSTRACT
ARTICLE HISTORY
Purpose The purpose of this study was to describe the meaning of resilience, factors facilitating resilience and barriers to resilience, from the perspective of persons with multiple sclerosis (MS), their care partners and community stakeholders. Method We conducted four focus groups: two with middle-aged (36–62 years) individuals with MS [one with men (n ¼ 6) and one with women (n ¼ 6)], one for partners of individuals with MS (n ¼ 11) and one with community stakeholders serving people with MS (n ¼ 9). We asked participants to describe what resilience means to them, what factors facilitate resilience and what barriers to resilience they perceive. We analyzed the focus group transcripts for emerging themes and sub-themes. Results Participants found it difficult to generate a concise definition of resilience, but they generated evocative descriptions of the concept. Psychological adaptation, social connection, life meaning, planning and physical wellness emerged as facilitators of resilience. Resilience depletion, negative thoughts and feelings, social limitations, social stigma and physical fatigue emerged as barriers to resilience. Conclusion The unpredictable nature of MS can present unique challenges to resilient adjustment, especially during middle age. However, several factors can contribute to resilience and quality of life, and these factors are amenable to intervention.
Received 29 July 2015 Revised 7 December 2015 Accepted 3 January 2016 Published online 5 February 2016 KEYWORDS
Aging; coping; multiple sclerosis; psychological resilience; quality of life
ä IMPLICATIONS FOR REHABILITATION
Resilience is the capacity to bounce back and thrive when faced with challenges. People with MS develop resilience through psychological adaptation, social connection, life meaning, planning ahead and physical wellness. Barriers to resilience with MS include burnout, negative thoughts and feelings, social difficulties, stigma and fatigue. Interventions should address both individual and social factors that support resilience, such as promoting positive thinking, planning and engagement in meaningful activities.
Introduction Multiple sclerosis (MS) is a neurological disorder affecting about 2.3 million people worldwide.[1] It causes progressive, unpredictable functional impairment, chronic pain, fatigue and other symptoms that impact health-related quality of life.[2] MS poses unique challenges to coping, as there is a high level of variability in presentation, rate of progression and impact on quality of life, causing the individual to have to cope with abnormal levels of uncertainty.[3] Moreover, individuals with relapsing-remitting MS (480%) must also cope with episodes of significantly-worsened physical functioning that are accompanied by anywhere from full to little recovery. The challenges presented by life with MS are accentuated during middle age when individuals may struggle to manage important social roles such as CONTACT Arielle M. Silverman ß 2016 Taylor & Francis
[email protected]
careers, families and leisure activities while coping with MS symptoms and changes in their functional status.[4,5] Despite this, many people with MS report leading happy, fulfilling lives.[6] Resilience is defined in the positive psychology literature as the human capacity to persist, bounce back and flourish when faced with stressors.[7] It has been identified as an important contributor to quality of life in the face of physical disability and illness.[8–10] However, little is known about how people with MS develop and maintain resilience in the face of progressive, unpredictable functional declines. Resilience is thought to be a multifaceted construct influenced by both stable factors (e.g., genetic predispositions, trait optimism) and modifiable factors (e.g., social support, mindfulness and coping skills).[7,10–14] Being more
Department of Rehabilitation Medicine, University of Washington, Box 359612, Seattle, WA 98104, USA
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resilient in the face of chronic health conditions buffers against negative outcomes (e.g., lower rates of depression and anxiety [15,16]) and facilitates positive outcomes (e.g., better social role functioning over time).[9] Unfortunately, people with MS can be at risk for low resilience. In a recent investigation,[10] people with MS reported lower resilience levels, on average, than community samples and people with other long-term physical conditions such as spinal cord injury. Resilience was especially low among young and middle-aged adults with MS, suggesting that barriers to resilience may be particularly prominent during early adulthood and midlife. A qualitative study looking at people aging with physical disabilities, including MS, noted a turning point in midlife where people began adjusting to physical and psychosocial changes due to age as well as those from their disability.[17] More research is needed to identify these barriers and ways to overcome them. Though resilience has been studied in a variety of populations, the empirical literature specific to MS is scant. A few studies have investigated related positive psychology concepts, such as adjustment,[18,19] benefit finding [20] and coping over time.[21] However, these studies have not focused specifically on the construct of resilience or described in detail how people with MS build and maintain resilience resources; they also did not simultaneously incorporate the perspectives of people with MS, their care partners and community stakeholders. One qualitative study exploring healthy aging did identify resilience as a subtheme, but the study itself did not seek detailed descriptions of resilience.[22] Further, no studies have explored how people in the MS community define and describe barriers to resilience. The aim of this qualitative study was to describe: (1) the meaning of resilience, (2) factors facilitating resilience and (3) barriers to resilience, from the unique perspectives of people living with MS, their partners and community stakeholders who support them. We included the perspectives of partners and community stakeholders in order to obtain data triangulation from multiple informant groups [23–25] and in an attempt to include the views of individuals with MS who are distressed or depressed and, thus, may be less likely to participate themselves in a focus group discussion.
Methods Procedure In Autumn of 2014, four focus groups were held to gain the perspectives of people living with MS, their care
partners and their stakeholders. These focus groups were conducted as part of participatory action research methodology in the development of a resilience intervention.[26] As such, the focus groups were conducted with three different categories of informants as a form of triangulation to use multiple sources to establish an understanding of resilience in the MS community. Each focus group represented a different population – one for men with MS, one for women with MS, one for care partners (e.g., spouses, partners, family members) and one for stakeholders (i.e., people who have an interest, involvement, or stake in the MS community). To maximize participation, two of our focus groups (men with MS and care partners) were conducted in conjunction with a regularly-scheduled support group meeting time and place (conference room at a clinic) and the stakeholder focus group was conducted by telephone. The discussions were led by a moderator, and each lasted about 1.5 h. There were always two moderators of opposite gender for each discussion. Moderators were one of the psychologists or senior researchers on our research team (names masked for review) with experience in qualitative research and facilitating group discussions. In all cases, the group was supported by study staff who attended to collect the surveys and distribute the study payments.
Participants The four groups of participants were recruited using both convenience and purposive recruitment methods. Patients from the [name masked for review] Medicine MS Center were invited to participate through clinician referral. Study staff also approached the leaders of existing support groups for patients and care partners and invited their members to participate in our study. Stakeholders were identified through our research team’s existing relationships within the MS community both locally and nationally and were invited by email by the study coordinator. As a study involving minimal risk, our university’s Human Subjects Division approved consenting participants via a written information statement delivered by email and verbal consent. Participants were paid $25 after the focus group discussion concluded. All of our procedures were approved by the (masked for review) Human Subjects Division. A total of 32 people participated, consisting of six men with MS, six women with MS, 11 care partners and nine stakeholders. One additional participant enrolled in the study but was unable to participate due to a scheduling conflict. The participants with MS were middle-aged, with an average age of 52.3 (SD 8.0) ranging from 36 to 62. The average duration of their MS
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Table 1. Characteristics of 12 of 32 participants who are living with multiple sclerosis (MS) and participated in a focus group discussion on resilience. Men (n¼6)
Women (n¼6)
Total (n¼12)
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Age (Mean (SD)) 50.2 (8.6) 54.3 (7.6) 52.3 (8.0) Years since diagnosis (Mean (SD)) 11.5 (4.7) 15.8 (9.3) 13.7 (7.4) White/Caucasian (%) 6 (100%) 6 (100%) 12 (100%) Married (%) 4 (67%) 4 (67%) 8 (67%) College degree or higher (%) 6 (100%) 6 (100%) 12 (100%) Employed (full or part-time) (%) 4 (67%) 2 (33%) 6 (50%) Household income Less than $20K 0 (0%) 1 (17%) 1 (8%) Between $20 and 49K 1 (17%) 1 (17%) 2 (17%) Between $50 and 99K 2 (33%) 3 (50%) 5 (42%) $100K or more 3 (50%) 1 (17%) 4 (33%)
diagnosis was 13.7 years (SD 7.4). The care partners group (55% female) reported that their partners lived longer with their diagnosis of MS [an average of 22.5 years (SD 18.1)] than our participants who were adults living with MS. The stakeholders represented a diverse group of individuals, including five from nonprofit organizations (National MS Society, MS Foundation and Full Life Care, an organization that provides adult day care for people living with chronic illnesses) that serve people living with MS, and four MS clinicians (two nurses, one community case manager and one social worker). Table 1 provides detailed participant demographics.
Data collection The discussions were semi-structured with a guide. Participants were asked questions such as, ‘‘What does resilience mean to you?’’, ‘‘What things help you bounce back during difficult times?’’ and ‘‘What barriers keep you from being resilient?’’ Care partners and stakeholders were asked to respond based upon their experiences with people who have MS and how they perceive those individuals exhibit resilience. Three of the focus group discussions were transcribed in real-time by a professional court reporter to facilitate the most accurate transcription. During the women’s group, the court reporter was unavailable, so the discussion was audio-recorded and transcribed verbatim by a trained transcriber. A short survey collecting demographic characteristics (age, education, years since diagnosis, etc.) was completed either before or after the focus group discussion.
Data analysis The transcripts were analyzed by two researchers (names masked for review) independently using a phenomenological approach,[27] which aims to offer insights into
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how a person in a specific context makes sense of the phenomenon being studied. In the phenomenological analysis, themes are generated from the data in a ‘‘bottom-up’’ fashion without being guided by any preexisting theoretical framework. The focus group transcripts were reviewed several times and then codes were assigned to the participant comments to summarize their meaning. Themes and sub-themes were then created by clustering similar units of meaning together.[28] The researchers looked for the themes common to most or all of the focus group discussions as well as the individual variations.[29] One researcher coded the transcripts in Dedoose version 5.0.11,[30] whereas the other manually coded in Microsoft Word. After all of the focus group transcripts were analyzed, the codes and subcategories were organized into the essential themes that characterized the phenomenon. The two researchers met and reconciled their codes, subcategories and themes and prepared a composite summary. The composite summary was presented to all authors and adjusted as needed based on ongoing discussion and reflection.
Results Below, we present exemplar quotes from the participants’ definitions of resilience. Five major facilitators and five major barriers to resilience emerged from the data, each with one or more sub-themes, as shown in Table 2. All of the quotations shown below are accompanied by the participant’s gender, age and duration of MS (or duration of partner’s MS in the case of care partners) written in parentheses.
Defining resilience Participants found it difficult to define resilience directly. Several participants used metaphors to describe the concept. One said, ‘‘It’s like a tire, I’m going to roll with [the disease]. . .. It’s learning that it’s like the weather, it will pass’’ (M, 56, 5 years). A care partner described resilience as being like ‘‘a rubber-band ball. Many, many rubber bands. . .. No matter how many times you smack it, it just comes back to you’’ (F, 37, 10 years). One woman with MS exclaimed, ‘‘Bouncing back. That’s it. Buoyancy’’ (F, 45, 24 years). Others emphasized thriving, ‘‘living well’’, or making the best of their lives with MS as their overall definition of resilience. One woman with MS stated: ‘‘Hey, we’ve only got one life. We’re only here one time. So we’ve got to make the best of it, right?’’ (F, 45, 24 years). A man with MS explained, ‘‘I try to do the most that I can for as long as I can, and that’s a day-to-day thing. . .. I don’t just
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Table 2. Facilitators and barriers to resilience themes and sub-themes that emerged from the qualitative coding. Category
Major theme
Sub-themes
Facilitators
Psychological adaptation and coping Social connection Life meaning Planning Physical wellness Resilience depletion Negative thoughts and feelings Social barriers Stigma Physical fatigue
Humour, optimism, flexibility, new normal, perseverance, acceptance and self-compassion Connecting with family and friends, peer support (from others with MS) Family relationships, hobbies, volunteerism Attention to logistics, routines, not overcommitting oneself, simplifying life Exercise, stress reduction, energy management Feeling burned out Depression/sadness, giving up, low self-worth, anger, dwelling on what one cannot do Wearing out or losing friends, people not understanding MS Denial, refusing accommodations, concealing MS from others Exhaustion, missed social opportunities
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Barriers
want to survive, I want to thrive’’ (M, 51, 15 years). Stakeholders also expressed this, ‘‘Having the attitude – you’re going to live the best life possible’’. Another participant with MS put it concisely: ‘‘It’s not dwelling on what you can’t do, it’s relishing what you can do. And keep going’’ (M, 56, 15 years). A final comment from someone with MS emphasized the importance of attitude and appraisal to resilience: ‘‘I hurt terrible, but I don’t feel bad’’ (M, 56, 5 years). However, some stakeholders, especially the clinicians, tended to define resilience in a pragmatic sense, ‘‘When I think about resiliency, I think about problem-solving and being able to think through solutions’’. In sum, while participants found it difficult to generate a universal definition of resilience, they generally viewed resilience as both the ability to focus on positive assets rather than deficits, and as a state of thriving, rather than merely surviving, in the face of MS-related challenges.
Facilitators of resilience Participants identified five major factors that support resilience in their lives: psychological adaptation, social connection, life meaning, planning and physical wellness. These are described in turn below.
Psychological adaptation Participants described a variety of psychological strategies that they employ to adapt emotionally and cognitively to MS (see Table 2 for a complete list of sub-themes). One common strategy is humour. One participant with MS said that he ‘‘watches a lot of standup comedy’’ (M, 56, 5 years) while another noted, ‘‘It [living with MS] just becomes so ironic at times that Larry David [a famous comedian] couldn’t make some of this stuff up’’ (F, 45, 24 years). Another added, ‘‘I think finding a funny story amidst the situations, it’s really important’’ (F, 59, 9 years). Participants described needing to create a ‘‘new normal’’ for themselves in the midst of MS. One commented, ‘‘Sometimes, my new normal’s different
every day’’ (F, 45, 24 years). A care partner echoed this sub-theme: ‘‘Given the extreme limitations that you now have, can you create a new life for yourself?’’ (F, 65, 6 years). By creating a ‘‘new normal’’, the participants could continue to view their lives positively while accepting the challenges and changes presented by MS. Stakeholders discussed the importance of ‘‘flexibility in thinking’’ and ‘‘flexibility to consider other ideas’’ as a way to adjust to MS-related losses. Both a positive outlook and awareness of challenges were seen as important psychological approaches to MS. One man with MS stated, ‘‘With this disease, the only thing I can control is my attitude. So why would I want to have a bad attitude?’’ (M, 56, 15 years). Another said, ‘‘I don’t feel like I have any other option but to be resilient. . .. I need to work in the morning and I need to take the kids to soccer, and I don’t really have an opportunity not to be active’’ (M, 44, 15 years). While perseverance is important, acceptance and self-compassion also support resilience: ‘‘I’ve been an artist for most of my life, and once I lost the colour red, I really had to find the time to grieve that. . .. Once I had the time to really grieve that, I could get out of that’’ (F, 51, 27 years). The idea of self-compassion was echoed by stakeholders, ‘‘helping people tap into the sense of shared humanity, mindfulness and self-kindness, and giving people those tools to be more compassionate towards themselves’’.
Social connection Participants cited social connections, both within and outside the MS community, as integral to their resilience. One woman with MS said, ‘‘I think that for me, it’s important to engage with other people’’ such as her family and friends (F, 62, 16 years). A man with MS noted, ‘‘getting socially involved and feeling like you matter is really important’’. He described how having MS deepened his connections with a few close friends: ‘‘The people in my life now are totally different from a year ago. And the relationships are all based on people actually wanting to be with me, not based on work or finances or what they will gain from knowing me’’ (M, 56,
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5 years). Structured activities can help with socialization; for example, one care partner described her husband’s participation in a water walk programme, where he found consistent social support and acceptance from the programme’s community (F, 72, 13 years). ‘‘He still goes to Water Walk three times a week; he hardly ever misses it. Somehow he just stumbled [into] it and it fit him, and it’s helping him know that people care about him’’. Stakeholders acknowledged the significance of family and friends, ‘‘I think people find hope when they have support’’. Some participants cited the value of connecting with other people who have MS. One man with MS said, ‘‘I think it’s a matter of feeling less self-conscious around those people [people with MS] because they don’t see you the way other people see you’’ (M, 56, 15 years). A woman with MS noted the practical assistance that others with MS can provide: ‘‘Maybe you have tools I don’t have, and you can give me some of your tools, and I’ll give you some of mine’’ (F, 45, 24 years). Thus, participants perceived others with MS as potential sources of both emotional and informational support.
Life meaning Both participants with MS and care partners agreed that finding meaning in life plays an integral role in supporting resilience. Participants identified a variety of sources of life meaning, including their families (particularly children and grandchildren), hobbies such as art and weaving, and volunteerism. One woman said, ‘‘For me, it’s always been a life of service. I was a reproductive health nurse, so I do patient modelling’’ (F, 51, 27 years). A care partner described his wife’s involvement in sewing projects and directing plays for her church as meaningful activities in her life (M, 72, 15 years). These meaningful activities allow people with MS to remain connected and engaged in life.
Planning Participants described how planning ahead, and attending to practical concerns, enable them to cope effectively with MS-related challenges. One participant stated, ‘‘I plan my day, I know what I am going to do and routine. I set up routines so I don’t have to think about things too much’’ (M, 56, 15 years). One essential component of planning involves simplifying life tasks and managing commitments in order to minimize fatigue. One man with MS said, ‘‘It helps to know when to say no. . .. And then explaining to yourself, it’s better to say no than to say yes and then not do it’’
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(M, 51, 15 years). Another man with MS described how moving from a two-story to a one-story home helped simplify his life and optimized his mobility (M, 44, 15 years). In general, participants felt that being proactive contributed to their resilience.
Physical wellness The final facilitator of resilience that emerged was physical wellness, including exercise, stress reduction and energy management. Several participants with MS mentioned exercise programmes. One said that ‘‘both the physical activity and the choice to stop working and go exercise is really important’’ for his wellness and relief of stress (M, 36, 6 years). Another said that ‘‘[exercise] makes me feel better even though it wipes me out’’ (M, 56, 15 years). One woman with MS described the training and finishing a triathlon when she was in her 50’s, ‘‘I trained for months, and I did it. I did it. I couldn’t do a triathlon right now if my life depended on it. . .. It was a window of time that has closed. I am so happy I did it’’ (F, 62, 17 years). Stress reduction and energy management were also emphasized. One man with MS said, ‘‘I think stress reduction is [a] big piece of it. Knowing what requires the most energy is part of being resilient’’ (M, 36, 6 years). A woman with MS described her meditation practice: ‘‘I’m in a meditation group. . .. It’s a mainstay. It gives me a pathway to my body so that I can get information from my body without anything traumatic happening’’ (F, 62, 17 years). Finally, participants with MS described rationing their energy and taking well-timed naps to replenish their energy reserves, ‘‘when I’m tired or when I’m fatigued, I just stop so that I can go again’’ (F, 47, 2 years).
Barriers to resilience Five barriers were described: resilience depletion, negative thoughts and feelings, social limitations, stigma and physical fatigue. Each of these themes included sub-themes (Table 2).
Resource depletion Participants described how living with MS can expend limited physical and mental resources. For example, some participants described feeling ‘‘burned out’’ or depleted after many years of accumulated challenges from managing MS. As one woman with MS said, ‘‘I feel like I’ve just re-invented myself so many times. . .. I feel like my tool bag is empty, I’ve gone to it so many times. . .. I’m physically and emotionally exhausted. . ..
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It’s like, after 27 years of doing this, I don’t know how to do this anymore’’ (F, 51, 27 years). A care partner echoed this concept when describing how accumulated hardships can deplete resilience: ‘‘I think your resilience is done when you’re done, when you’re just through dealing with it. And that happens too’’ (F, 37, 10 years).
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Negative thoughts and feelings Participants also cited a number of negative cognitive and emotional patterns that hinder resilience. One example is the tendency to dwell upon what one can no longer do. One care partner described of her husband, ‘‘there will be months at a time when he’ll focus on the main thing he wants to do in life, which he can’t do anymore. . .. He gets very depressed at the thought of everybody’s helping him all the time and he can’t do anything for anybody else. . .. And when he’s focused on that, he’s not resilient’’ (F, 76, 25 years). Other participants described depression or anger. One man with MS said, ‘‘I’ve seen my career just crash and burn, and I understand I can’t do what I did, and yet, I’m not over that at all. I’m still really angry about it’’ (M, 58, 13 years). One stakeholder noted that some people living with MS are ‘‘consumed by their rage, their fear, their depression, the sadness or the lack of hope’’. In some cases, negative thoughts and feelings can foster a tendency to give up or disengage from activities. One care partner described this in her husband: ‘‘You know, if it was up to him, he’d be dead, basically’’ (F, 65, 6 years).
accommodations is huge’’, explaining how people with MS may be reluctant to use mobility aids in public (F, 37, 10 years). Another care partner described how his wife concealed her MS diagnosis from everyone, even her children (M, 67, 44 years). Avoidance and concealment can aid coping with social stigma in the short term, but can also forestall the use of adaptive strategies that support resilience, such as the use of assistive technologies or the benefits of support from friends and family.
Physical fatigue A final barrier that participants identified is physical fatigue and exhaustion, ‘‘It just is life-sucking’’ (F, 51, 27 years). Similar to resilience depletion, fatigue can interfere with adaptation to MS-related challenges. Participants with MS also described fatigue as a barrier to engaging in wellness-promoting activities, such as exercise, ‘‘when you’re fatigued, it’s really hard to get out and motivate’’ (F, 45, 24 years). One participant described her disappointment during a long-awaited, rare visit with an old friend, ‘‘I was only gonna be up 8 h and I fell asleep three times during dinner and I slept the entire way home from dinner. I was crushed. [These were] people I really wanted to see and interact [with]’’ (F, 51, 27 years). Nearly all participants indicated that MS-related fatigue had a negative impact on their participation in life activities or even daily activities like taking a shower.
Discussion Social limitations Participants described how the social challenges or limitations associated with MS can act as barriers to resilience. Some participants with MS found that they lost friendships or struggled with friends who did not understand their condition. One woman with MS said that ‘‘my friends are exhausted by the wheelchair’’ (F, 51, 27 years). While a care partner said of his wife, ‘‘most of [her friends] have no concept of what MS is’’ (M, 67, 44 years). Others cited unemployment, transportation barriers and fatigue as obstacles to social connection.
Social stigma Some participants and their partners described how stigmas of chronic illness and aging impeded resilience. In particular, stigma drove some individuals to forego using assistive technologies or to conceal their MS from others, ‘‘I wasn’t ready to be [the] white-haired lady with a cane, so I went and got the walking stick instead’’ (F, 62, 16 years). One care partner said that ‘‘refusal of
MS challenges an individual’s ability to be resilient due to its variability in symptoms and impact, unpredictability and potentially accumulating losses. Despite these obvious challenges, resilience is in its infancy of study among individuals living with MS. The present study was the first to explore how people in the MS community (people with MS, their partners and their stakeholders) define resilience and its barriers and facilitators. Themes from our focus groups revealed difficulty defining resilience, but the groups generated a number of interesting exemplar statements and identified five facilitators and five barriers to developing and maintaining resilience. When asked to define resilience, participants in our focus groups had difficulty agreeing upon a concise definition. That does not mean, however, that they lacked an understanding of the elements that are central to resilience; rather, these were conveyed through metaphors, images and examples. Together, these statements emphasized: (a) bouncing back from setbacks repeatedly over time, (b) positive assets (rather
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than deficits) and (c) thriving despite MS (rather than surviving with MS). Our themes are similar to those identified in the broader resilience literature, such as in Bonanno (2004) who suggested that resilience in people with spinal cord injury includes persistence, being able to bounce back, and flourishing in the face of stressors.[7] Similar to our findings, Ploughman et al.’s qualitative study of older people (55 years or older) who had lived with MS for at least 20 years considered resilience an important part of healthy aging.[22] Participants readily identified factors that support resilience. Our participants described using a variety of coping strategies to maintain resilience, such as psychological flexibility, maintaining a social connection, seeking life meaning and employing strategies to manage logistical challenges and physical symptoms. The importance of coping strategies to resilience is well documented in other populations. For example, psychological flexibility was found to be central to successful coping among individuals facing new stressors.[7] In MS, social support has been identified as important for adaptation and better adjustment, both for emotional support and practical support (such as helping with activities of daily living and mobility).[18,31] In addition, social connection and life purpose have been identified as important factors in biopsychosocial resilience models [12] and resilience interventions in other populations target these factors.[32–34] However, participants indicated that thriving in mid-life is not always easy in the face of MS and its associated life changes. Some participants described becoming mentally depleted by the changing demands of MS, which made it difficult for them to adapt to future challenges. This is consistent with the literature on self-regulation and ego-depletion.[35] The challenges associated with the social stigma that participants described are consistent with the literature in people aging with MS [18,36] and aging in general.[37] We found that negative thoughts and feelings can interfere with healthy psychological responding while social isolation and societal stigma can impede full participation and the maintenance of needed social connections. Finally, our participants felt that fatigue was a particularly challenging MS symptom that interferes with resilience. The impact of fatigue for people living with MS is well-documented in the MS literature and interventions to reduce and manage fatigue are plentiful.[38] Consistent with this, chronic fatigue is associated with distress and loss of function in disability populations.[5,35] The facilitators and barriers to resilience provide central targets for resilience interventions. Existing
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psychology interventions have much to contribute to building resilience, as elements of them address facilitators and barriers to resilience. For example, goals of cognitive-behavioural therapy include reducing unhelpful, negative thinking and promoting the use of adaptive coping strategies such as symptom self-management. Acceptance and commitment therapy focuses heavily on staying connected with aspects of life that give meaning to the individual. Many psychological interventions focus more on the individual than on the social context. Our themes revealed a value in focusing on the social context – including fostering social connections and life meaning (which often has a social role component) and addressing social limitations and stigma. Our findings suggest that an intervention for people with MS should be developed to both promote facilitators of resilience and reduce barriers to resilience. Despite the present study’s strengths, it is important to consider a number of limitations. While we noted that we identified common themes, facilitators and barriers across participants and groups, we feel that we fell short of formally meeting criteria for ‘‘saturation’’ – the common point at which a series of focus groups is terminated – due to time and budget constraints that prevented holding additional groups. As with any qualitative research, we are mindful of sources of bias, such as that some of the participants and stakeholders had formal or informal professional relationships with the moderators. Additionally, participants from the men’s and care partner focus groups were already members of MS support groups, and most participants were married, suggesting our findings may not generalize to samples with less existing social support or who do not voluntarily join support groups. Finally, as this was a convenience sample, the participants living with MS and care-partners were comprised of volunteers from a limited geographic region (the masked area) and individuals who were white and had higher levels of education, suggesting that these findings may not be generalizable to other individuals with MS living elsewhere. Despite these limitations, this study shows how, from the viewpoint of people affected by MS, people with MS can maintain resilience in the face of changing and unpredictable circumstances, bouncing back again and again. The unpredictable nature of MS can and does present unique challenges to resilience, especially during middle age. However, this study and the literature suggest a number of avenues for promoting resilience in this population. Interventions aimed at increasing resilience have the potential to enable people with MS to live their lives to the fullest as they age.
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Acknowledgements The authors would like to thank everyone who participated in our focus group discussions. We also wish to thank Dagmar Amtmann, PhD for her assistance in co-moderating one of the focus group discussions.
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Disclosure statement The authors have no financial support or conflicts of interest to report. The contents of this article were developed under a grant from the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR grant number 90RT5023-01-00). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of this article do not necessarily represent the policy of NIDILRR, ACL, HHS, and you should not assume endorsement by the Federal Government.
References [1] Society NMS. MS Prevalence; [cited 2015 Apr 27]. Available from: http://www.nationalmssociety.org/ about-the-society/ms-prevalence. [2] Montel SR, Bungener C. Coping and quality of life in one hundred and thirty five subjects with multiple sclerosis. Mult Scler. 2007;13:393–401. [3] Alschuler KN, Beier ML. Intolerance of uncertainty in multiple sclerosis: shaping an agenda for future research. Int J MS Care. 2014;17:153–158. [4] Molton IR, Hirsh AT, Smith AE, et al. Age and the role of restricted activities in adjustment to disability-related pain. J Health Psychol. 2014;19:1025–1034. [5] Molton IR, Terrill AL, Smith AE, et al. Modeling secondary health conditions in adults aging with physical disability. J Aging Health. 2014;26:335–359. [6] Barak Y, Achiron A. Happiness and personal growth are attainable in interferon-beta-1a treated multiple sclerosis patients. J Happiness Stud. 2011;12:887–895. [7] Bonanno GA. Loss, trauma, and human resilience: have we underestimated the human capacity to thrive after extremely aversive events? Am Psychol. 2004;59: 20–28. [8] Moore RC, Eyler LT, Mausbach BT, et al. Complex interplay between health and successful aging: role of perceived stress, resilience, and social support. Am J Geriatr Psychiatry. 2015;23:622–632. [9] Silverman AM, Molton IR, Alschuler KN, et al. Resilience predicts functional outcomes in people aging with disability: a longitudinal investigation. Arch Phys Med Rehabil. 2015;96:1262–1268. [10] Terrill AL, Molton IR, Ehde DM, et al. Resilience, age, and perceived symptoms in persons with long-term physical disabilities. J Health Psychol. 2014;1:11. [11] Caspi A, Sugden K, Moffitt TE, et al. Influence of life stress on depression: moderation by a polymorphism in the 5-HTT gene. Science 2003;301:386–389. [12] Yeung EW, Arewasikporn A, Zautra AJ. Resilience and chronic pain. J Soc Clin Psychol. 2012;31:593–617.
[13] Smith BW, Zautra AJ. Vulnerability and resilience in women with arthritis: test of a two-factor model. J Consult Clin Psychol. 2008;76:799–810. [14] Senders A, Bourdette D, Hanes D, et al. Perceived stress in multiple sclerosis: the potential role of mindfulness in health and well-being. J Evid Based Complementary Altern Med. 2014;19:104–111. [15] Tan-Kristanto S, Kiropoulos LA. Resilience, self-efficacy, coping styles and depressive and anxiety symptoms in those newly diagnosed with multiple sclerosis. Psychol Health Med. 2015;20:635–645. [16] White B, Driver S, Warren AM. Resilience and indicators of adjustment during rehabilitation from a spinal cord injury. Rehabil Psychol. 2010;55:23–32. [17] Yorkston KM, McMullan KA, Molton I, et al. Pathways of change experienced by people aging with disability: a focus group study. Disabil Rehabil. 2010;32:1697–1704. [18] DiLorenzo TA, Becker-Feigeles J, Halper J, et al. A qualitative investigation of adaptation in older individuals with multiple sclerosis. Disabil Rehabil. 2008;30:1088–1097. [19] Dennison L, Moss-Morris R, Yardley L, et al. Change and processes of change within interventions to promote adjustment to multiple sclerosis: learning from patient experiences. Psychol Health. 2013;28:973–992. [20] Pakenham KI. Benefit finding in multiple sclerosis, and associations with positive and negative outcomes. Health Psychol. 2005;24:123–132. [21] Boland P, Levack WM, Hudson S, et al. Coping with multiple sclerosis as a couple: ‘peaks and troughs’ – an interpretative phenomenological exploration. Disabil Rehabil. 2012;34:1367–1375. [22] Ploughman M, Austin MW, Murdoch M, et al. Factors influencing healthy aging with multiple sclerosis: a qualitative study. Disabil Rehabil. 2012;34: 26–33. [23] Arksey H, Knight P. Interviewing for social scientists. London, UK: Sage Publications; 1999. [24] Bloor M. Techniques of validation in qualitative research: a critical commentary. In Millar G, Dingwall R, editor. Context and method in qualitative research. London, UK: Sage Publications; 1997. p. 37–50. [25] Holloway I. Basic concepts for qualitative research. Oxford: Blackwell Science; 1997. [26] Ehde DM, Wegener ST, Williams RM, et al. Developing, testing, and sustaining rehabilitation interventions via participatory action research. Arch Phys Med Rehabil. 2013;94:S30–S42. [27] Moustakas C. Phenomenological research methods. Thousand Oaks (CA): Sage Publications, Inc; 1994. [28] Creswell JW. Qualitative inquiry and research design: choosing among five traditions. Thousand Oaks, CA: Sage Publications; 1998. [29] Hycner RH. Some guidelines for the phenomenological analysis of interview data. In A. Bryman A, Burgess RG, editor. Qualitative research. Vol. 3. London (UK): Sage Publications; 1999. p. 143–164. [30] Dedoose. Web application for managing, analyzing, and presenting qualitative and mixed method research data. 2014. [cited 2015 Feb 1]. Available from: www.dedoose.com.
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Downloaded by [Nanyang Technological University] at 18:43 13 May 2016
[31] Tabuteau-Harrison SL, Haslam C, Mewse AJ. Adjusting to living with multiple sclerosis: the role of social groups. Neuropsychol Rehabil. 2016;26:36–59. [32] Moss-Morris R, Dennison L, Landau S, et al. A randomized controlled trial of cognitive behavioral therapy (CBT) for adjusting to multiple sclerosis (the saMS trial): does CBT work and for whom does it work? J Consult Clin Psychol. 2012;81:251–262. [33] Steinhardt MA, Mamerow MM, Brown SA, et al. A resilience intervention in African American adults with type 2 diabetes: a pilot study of efficacy. Diabetes Educ. 2009;35:274–284. [34] Burton NW, Pakenham KI, Brown WJ. Evaluating the effectiveness of psychosocial resilience training for heart health, and the added value of promoting physical
[35]
[36]
[37]
[38]
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activity: a cluster randomized trial of the READY program. BMC Public Health. 2009;9:427. Muraven M, Baumeister RF. Self-regulation and depletion of limited resources: does self-control resemble a muscle? Psychol Bull. 2000;126:247–259. Finlayson M, van Denend T. Experiencing the loss of mobility: perspectives of older adults with MS. Disabil Rehabil. 2003;25:1168–1180. Goins RT, Jones J, Schure M, et al. Older adults’ perceptions of mobility: a metasynthesis of qualitative studies. 2015;55:929–942. Asano M, Berg E, Johnson K, et al. A scoping review of rehabilitation interventions that reduce fatigue among adults with multiple sclerosis. Disabil Rehabil. 2015;37: 729–738.
ISSN: 0963-8288 (Print) 1464-5165 (Online) Journal homepage: http://www.tandfonline.com/loi/idre20
Bouncing back again, and again: a qualitative study of resilience in people with multiple sclerosis Arielle M. Silverman, Aimee M. Verrall, Kevin N. Alschuler, Amanda E. Smith & Dawn M. Ehde To cite this article: Arielle M. Silverman, Aimee M. Verrall, Kevin N. Alschuler, Amanda E. Smith & Dawn M. Ehde (2016): Bouncing back again, and again: a qualitative study of resilience in people with multiple sclerosis, Disability and Rehabilitation, DOI: 10.3109/09638288.2016.1138556 To link to this article: http://dx.doi.org/10.3109/09638288.2016.1138556
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DISABILITY AND REHABILITATION, 2016 http://dx.doi.org/10.3109/09638288.2016.1138556
RESEARCH PAPER
Bouncing back again, and again: a qualitative study of resilience in people with multiple sclerosis Arielle M. Silvermana, Aimee M. Verralla, Kevin N. Alschulera,b, Amanda E. Smitha and Dawn M. Ehdea
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a Department of Rehabilitation Medicine, University of Washington School of Medicine, Seattle, WA, USA; bDepartment of Neurology, University of Washington School of Medicine, Seattle, WA, USA
ABSTRACT
ARTICLE HISTORY
Purpose The purpose of this study was to describe the meaning of resilience, factors facilitating resilience and barriers to resilience, from the perspective of persons with multiple sclerosis (MS), their care partners and community stakeholders. Method We conducted four focus groups: two with middle-aged (36–62 years) individuals with MS [one with men (n ¼ 6) and one with women (n ¼ 6)], one for partners of individuals with MS (n ¼ 11) and one with community stakeholders serving people with MS (n ¼ 9). We asked participants to describe what resilience means to them, what factors facilitate resilience and what barriers to resilience they perceive. We analyzed the focus group transcripts for emerging themes and sub-themes. Results Participants found it difficult to generate a concise definition of resilience, but they generated evocative descriptions of the concept. Psychological adaptation, social connection, life meaning, planning and physical wellness emerged as facilitators of resilience. Resilience depletion, negative thoughts and feelings, social limitations, social stigma and physical fatigue emerged as barriers to resilience. Conclusion The unpredictable nature of MS can present unique challenges to resilient adjustment, especially during middle age. However, several factors can contribute to resilience and quality of life, and these factors are amenable to intervention.
Received 29 July 2015 Revised 7 December 2015 Accepted 3 January 2016 Published online 5 February 2016 KEYWORDS
Aging; coping; multiple sclerosis; psychological resilience; quality of life
ä IMPLICATIONS FOR REHABILITATION
Resilience is the capacity to bounce back and thrive when faced with challenges. People with MS develop resilience through psychological adaptation, social connection, life meaning, planning ahead and physical wellness. Barriers to resilience with MS include burnout, negative thoughts and feelings, social difficulties, stigma and fatigue. Interventions should address both individual and social factors that support resilience, such as promoting positive thinking, planning and engagement in meaningful activities.
Introduction Multiple sclerosis (MS) is a neurological disorder affecting about 2.3 million people worldwide.[1] It causes progressive, unpredictable functional impairment, chronic pain, fatigue and other symptoms that impact health-related quality of life.[2] MS poses unique challenges to coping, as there is a high level of variability in presentation, rate of progression and impact on quality of life, causing the individual to have to cope with abnormal levels of uncertainty.[3] Moreover, individuals with relapsing-remitting MS (480%) must also cope with episodes of significantly-worsened physical functioning that are accompanied by anywhere from full to little recovery. The challenges presented by life with MS are accentuated during middle age when individuals may struggle to manage important social roles such as CONTACT Arielle M. Silverman ß 2016 Taylor & Francis
[email protected]
careers, families and leisure activities while coping with MS symptoms and changes in their functional status.[4,5] Despite this, many people with MS report leading happy, fulfilling lives.[6] Resilience is defined in the positive psychology literature as the human capacity to persist, bounce back and flourish when faced with stressors.[7] It has been identified as an important contributor to quality of life in the face of physical disability and illness.[8–10] However, little is known about how people with MS develop and maintain resilience in the face of progressive, unpredictable functional declines. Resilience is thought to be a multifaceted construct influenced by both stable factors (e.g., genetic predispositions, trait optimism) and modifiable factors (e.g., social support, mindfulness and coping skills).[7,10–14] Being more
Department of Rehabilitation Medicine, University of Washington, Box 359612, Seattle, WA 98104, USA
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resilient in the face of chronic health conditions buffers against negative outcomes (e.g., lower rates of depression and anxiety [15,16]) and facilitates positive outcomes (e.g., better social role functioning over time).[9] Unfortunately, people with MS can be at risk for low resilience. In a recent investigation,[10] people with MS reported lower resilience levels, on average, than community samples and people with other long-term physical conditions such as spinal cord injury. Resilience was especially low among young and middle-aged adults with MS, suggesting that barriers to resilience may be particularly prominent during early adulthood and midlife. A qualitative study looking at people aging with physical disabilities, including MS, noted a turning point in midlife where people began adjusting to physical and psychosocial changes due to age as well as those from their disability.[17] More research is needed to identify these barriers and ways to overcome them. Though resilience has been studied in a variety of populations, the empirical literature specific to MS is scant. A few studies have investigated related positive psychology concepts, such as adjustment,[18,19] benefit finding [20] and coping over time.[21] However, these studies have not focused specifically on the construct of resilience or described in detail how people with MS build and maintain resilience resources; they also did not simultaneously incorporate the perspectives of people with MS, their care partners and community stakeholders. One qualitative study exploring healthy aging did identify resilience as a subtheme, but the study itself did not seek detailed descriptions of resilience.[22] Further, no studies have explored how people in the MS community define and describe barriers to resilience. The aim of this qualitative study was to describe: (1) the meaning of resilience, (2) factors facilitating resilience and (3) barriers to resilience, from the unique perspectives of people living with MS, their partners and community stakeholders who support them. We included the perspectives of partners and community stakeholders in order to obtain data triangulation from multiple informant groups [23–25] and in an attempt to include the views of individuals with MS who are distressed or depressed and, thus, may be less likely to participate themselves in a focus group discussion.
Methods Procedure In Autumn of 2014, four focus groups were held to gain the perspectives of people living with MS, their care
partners and their stakeholders. These focus groups were conducted as part of participatory action research methodology in the development of a resilience intervention.[26] As such, the focus groups were conducted with three different categories of informants as a form of triangulation to use multiple sources to establish an understanding of resilience in the MS community. Each focus group represented a different population – one for men with MS, one for women with MS, one for care partners (e.g., spouses, partners, family members) and one for stakeholders (i.e., people who have an interest, involvement, or stake in the MS community). To maximize participation, two of our focus groups (men with MS and care partners) were conducted in conjunction with a regularly-scheduled support group meeting time and place (conference room at a clinic) and the stakeholder focus group was conducted by telephone. The discussions were led by a moderator, and each lasted about 1.5 h. There were always two moderators of opposite gender for each discussion. Moderators were one of the psychologists or senior researchers on our research team (names masked for review) with experience in qualitative research and facilitating group discussions. In all cases, the group was supported by study staff who attended to collect the surveys and distribute the study payments.
Participants The four groups of participants were recruited using both convenience and purposive recruitment methods. Patients from the [name masked for review] Medicine MS Center were invited to participate through clinician referral. Study staff also approached the leaders of existing support groups for patients and care partners and invited their members to participate in our study. Stakeholders were identified through our research team’s existing relationships within the MS community both locally and nationally and were invited by email by the study coordinator. As a study involving minimal risk, our university’s Human Subjects Division approved consenting participants via a written information statement delivered by email and verbal consent. Participants were paid $25 after the focus group discussion concluded. All of our procedures were approved by the (masked for review) Human Subjects Division. A total of 32 people participated, consisting of six men with MS, six women with MS, 11 care partners and nine stakeholders. One additional participant enrolled in the study but was unable to participate due to a scheduling conflict. The participants with MS were middle-aged, with an average age of 52.3 (SD 8.0) ranging from 36 to 62. The average duration of their MS
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Table 1. Characteristics of 12 of 32 participants who are living with multiple sclerosis (MS) and participated in a focus group discussion on resilience. Men (n¼6)
Women (n¼6)
Total (n¼12)
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Age (Mean (SD)) 50.2 (8.6) 54.3 (7.6) 52.3 (8.0) Years since diagnosis (Mean (SD)) 11.5 (4.7) 15.8 (9.3) 13.7 (7.4) White/Caucasian (%) 6 (100%) 6 (100%) 12 (100%) Married (%) 4 (67%) 4 (67%) 8 (67%) College degree or higher (%) 6 (100%) 6 (100%) 12 (100%) Employed (full or part-time) (%) 4 (67%) 2 (33%) 6 (50%) Household income Less than $20K 0 (0%) 1 (17%) 1 (8%) Between $20 and 49K 1 (17%) 1 (17%) 2 (17%) Between $50 and 99K 2 (33%) 3 (50%) 5 (42%) $100K or more 3 (50%) 1 (17%) 4 (33%)
diagnosis was 13.7 years (SD 7.4). The care partners group (55% female) reported that their partners lived longer with their diagnosis of MS [an average of 22.5 years (SD 18.1)] than our participants who were adults living with MS. The stakeholders represented a diverse group of individuals, including five from nonprofit organizations (National MS Society, MS Foundation and Full Life Care, an organization that provides adult day care for people living with chronic illnesses) that serve people living with MS, and four MS clinicians (two nurses, one community case manager and one social worker). Table 1 provides detailed participant demographics.
Data collection The discussions were semi-structured with a guide. Participants were asked questions such as, ‘‘What does resilience mean to you?’’, ‘‘What things help you bounce back during difficult times?’’ and ‘‘What barriers keep you from being resilient?’’ Care partners and stakeholders were asked to respond based upon their experiences with people who have MS and how they perceive those individuals exhibit resilience. Three of the focus group discussions were transcribed in real-time by a professional court reporter to facilitate the most accurate transcription. During the women’s group, the court reporter was unavailable, so the discussion was audio-recorded and transcribed verbatim by a trained transcriber. A short survey collecting demographic characteristics (age, education, years since diagnosis, etc.) was completed either before or after the focus group discussion.
Data analysis The transcripts were analyzed by two researchers (names masked for review) independently using a phenomenological approach,[27] which aims to offer insights into
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how a person in a specific context makes sense of the phenomenon being studied. In the phenomenological analysis, themes are generated from the data in a ‘‘bottom-up’’ fashion without being guided by any preexisting theoretical framework. The focus group transcripts were reviewed several times and then codes were assigned to the participant comments to summarize their meaning. Themes and sub-themes were then created by clustering similar units of meaning together.[28] The researchers looked for the themes common to most or all of the focus group discussions as well as the individual variations.[29] One researcher coded the transcripts in Dedoose version 5.0.11,[30] whereas the other manually coded in Microsoft Word. After all of the focus group transcripts were analyzed, the codes and subcategories were organized into the essential themes that characterized the phenomenon. The two researchers met and reconciled their codes, subcategories and themes and prepared a composite summary. The composite summary was presented to all authors and adjusted as needed based on ongoing discussion and reflection.
Results Below, we present exemplar quotes from the participants’ definitions of resilience. Five major facilitators and five major barriers to resilience emerged from the data, each with one or more sub-themes, as shown in Table 2. All of the quotations shown below are accompanied by the participant’s gender, age and duration of MS (or duration of partner’s MS in the case of care partners) written in parentheses.
Defining resilience Participants found it difficult to define resilience directly. Several participants used metaphors to describe the concept. One said, ‘‘It’s like a tire, I’m going to roll with [the disease]. . .. It’s learning that it’s like the weather, it will pass’’ (M, 56, 5 years). A care partner described resilience as being like ‘‘a rubber-band ball. Many, many rubber bands. . .. No matter how many times you smack it, it just comes back to you’’ (F, 37, 10 years). One woman with MS exclaimed, ‘‘Bouncing back. That’s it. Buoyancy’’ (F, 45, 24 years). Others emphasized thriving, ‘‘living well’’, or making the best of their lives with MS as their overall definition of resilience. One woman with MS stated: ‘‘Hey, we’ve only got one life. We’re only here one time. So we’ve got to make the best of it, right?’’ (F, 45, 24 years). A man with MS explained, ‘‘I try to do the most that I can for as long as I can, and that’s a day-to-day thing. . .. I don’t just
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Table 2. Facilitators and barriers to resilience themes and sub-themes that emerged from the qualitative coding. Category
Major theme
Sub-themes
Facilitators
Psychological adaptation and coping Social connection Life meaning Planning Physical wellness Resilience depletion Negative thoughts and feelings Social barriers Stigma Physical fatigue
Humour, optimism, flexibility, new normal, perseverance, acceptance and self-compassion Connecting with family and friends, peer support (from others with MS) Family relationships, hobbies, volunteerism Attention to logistics, routines, not overcommitting oneself, simplifying life Exercise, stress reduction, energy management Feeling burned out Depression/sadness, giving up, low self-worth, anger, dwelling on what one cannot do Wearing out or losing friends, people not understanding MS Denial, refusing accommodations, concealing MS from others Exhaustion, missed social opportunities
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Barriers
want to survive, I want to thrive’’ (M, 51, 15 years). Stakeholders also expressed this, ‘‘Having the attitude – you’re going to live the best life possible’’. Another participant with MS put it concisely: ‘‘It’s not dwelling on what you can’t do, it’s relishing what you can do. And keep going’’ (M, 56, 15 years). A final comment from someone with MS emphasized the importance of attitude and appraisal to resilience: ‘‘I hurt terrible, but I don’t feel bad’’ (M, 56, 5 years). However, some stakeholders, especially the clinicians, tended to define resilience in a pragmatic sense, ‘‘When I think about resiliency, I think about problem-solving and being able to think through solutions’’. In sum, while participants found it difficult to generate a universal definition of resilience, they generally viewed resilience as both the ability to focus on positive assets rather than deficits, and as a state of thriving, rather than merely surviving, in the face of MS-related challenges.
Facilitators of resilience Participants identified five major factors that support resilience in their lives: psychological adaptation, social connection, life meaning, planning and physical wellness. These are described in turn below.
Psychological adaptation Participants described a variety of psychological strategies that they employ to adapt emotionally and cognitively to MS (see Table 2 for a complete list of sub-themes). One common strategy is humour. One participant with MS said that he ‘‘watches a lot of standup comedy’’ (M, 56, 5 years) while another noted, ‘‘It [living with MS] just becomes so ironic at times that Larry David [a famous comedian] couldn’t make some of this stuff up’’ (F, 45, 24 years). Another added, ‘‘I think finding a funny story amidst the situations, it’s really important’’ (F, 59, 9 years). Participants described needing to create a ‘‘new normal’’ for themselves in the midst of MS. One commented, ‘‘Sometimes, my new normal’s different
every day’’ (F, 45, 24 years). A care partner echoed this sub-theme: ‘‘Given the extreme limitations that you now have, can you create a new life for yourself?’’ (F, 65, 6 years). By creating a ‘‘new normal’’, the participants could continue to view their lives positively while accepting the challenges and changes presented by MS. Stakeholders discussed the importance of ‘‘flexibility in thinking’’ and ‘‘flexibility to consider other ideas’’ as a way to adjust to MS-related losses. Both a positive outlook and awareness of challenges were seen as important psychological approaches to MS. One man with MS stated, ‘‘With this disease, the only thing I can control is my attitude. So why would I want to have a bad attitude?’’ (M, 56, 15 years). Another said, ‘‘I don’t feel like I have any other option but to be resilient. . .. I need to work in the morning and I need to take the kids to soccer, and I don’t really have an opportunity not to be active’’ (M, 44, 15 years). While perseverance is important, acceptance and self-compassion also support resilience: ‘‘I’ve been an artist for most of my life, and once I lost the colour red, I really had to find the time to grieve that. . .. Once I had the time to really grieve that, I could get out of that’’ (F, 51, 27 years). The idea of self-compassion was echoed by stakeholders, ‘‘helping people tap into the sense of shared humanity, mindfulness and self-kindness, and giving people those tools to be more compassionate towards themselves’’.
Social connection Participants cited social connections, both within and outside the MS community, as integral to their resilience. One woman with MS said, ‘‘I think that for me, it’s important to engage with other people’’ such as her family and friends (F, 62, 16 years). A man with MS noted, ‘‘getting socially involved and feeling like you matter is really important’’. He described how having MS deepened his connections with a few close friends: ‘‘The people in my life now are totally different from a year ago. And the relationships are all based on people actually wanting to be with me, not based on work or finances or what they will gain from knowing me’’ (M, 56,
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5 years). Structured activities can help with socialization; for example, one care partner described her husband’s participation in a water walk programme, where he found consistent social support and acceptance from the programme’s community (F, 72, 13 years). ‘‘He still goes to Water Walk three times a week; he hardly ever misses it. Somehow he just stumbled [into] it and it fit him, and it’s helping him know that people care about him’’. Stakeholders acknowledged the significance of family and friends, ‘‘I think people find hope when they have support’’. Some participants cited the value of connecting with other people who have MS. One man with MS said, ‘‘I think it’s a matter of feeling less self-conscious around those people [people with MS] because they don’t see you the way other people see you’’ (M, 56, 15 years). A woman with MS noted the practical assistance that others with MS can provide: ‘‘Maybe you have tools I don’t have, and you can give me some of your tools, and I’ll give you some of mine’’ (F, 45, 24 years). Thus, participants perceived others with MS as potential sources of both emotional and informational support.
Life meaning Both participants with MS and care partners agreed that finding meaning in life plays an integral role in supporting resilience. Participants identified a variety of sources of life meaning, including their families (particularly children and grandchildren), hobbies such as art and weaving, and volunteerism. One woman said, ‘‘For me, it’s always been a life of service. I was a reproductive health nurse, so I do patient modelling’’ (F, 51, 27 years). A care partner described his wife’s involvement in sewing projects and directing plays for her church as meaningful activities in her life (M, 72, 15 years). These meaningful activities allow people with MS to remain connected and engaged in life.
Planning Participants described how planning ahead, and attending to practical concerns, enable them to cope effectively with MS-related challenges. One participant stated, ‘‘I plan my day, I know what I am going to do and routine. I set up routines so I don’t have to think about things too much’’ (M, 56, 15 years). One essential component of planning involves simplifying life tasks and managing commitments in order to minimize fatigue. One man with MS said, ‘‘It helps to know when to say no. . .. And then explaining to yourself, it’s better to say no than to say yes and then not do it’’
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(M, 51, 15 years). Another man with MS described how moving from a two-story to a one-story home helped simplify his life and optimized his mobility (M, 44, 15 years). In general, participants felt that being proactive contributed to their resilience.
Physical wellness The final facilitator of resilience that emerged was physical wellness, including exercise, stress reduction and energy management. Several participants with MS mentioned exercise programmes. One said that ‘‘both the physical activity and the choice to stop working and go exercise is really important’’ for his wellness and relief of stress (M, 36, 6 years). Another said that ‘‘[exercise] makes me feel better even though it wipes me out’’ (M, 56, 15 years). One woman with MS described the training and finishing a triathlon when she was in her 50’s, ‘‘I trained for months, and I did it. I did it. I couldn’t do a triathlon right now if my life depended on it. . .. It was a window of time that has closed. I am so happy I did it’’ (F, 62, 17 years). Stress reduction and energy management were also emphasized. One man with MS said, ‘‘I think stress reduction is [a] big piece of it. Knowing what requires the most energy is part of being resilient’’ (M, 36, 6 years). A woman with MS described her meditation practice: ‘‘I’m in a meditation group. . .. It’s a mainstay. It gives me a pathway to my body so that I can get information from my body without anything traumatic happening’’ (F, 62, 17 years). Finally, participants with MS described rationing their energy and taking well-timed naps to replenish their energy reserves, ‘‘when I’m tired or when I’m fatigued, I just stop so that I can go again’’ (F, 47, 2 years).
Barriers to resilience Five barriers were described: resilience depletion, negative thoughts and feelings, social limitations, stigma and physical fatigue. Each of these themes included sub-themes (Table 2).
Resource depletion Participants described how living with MS can expend limited physical and mental resources. For example, some participants described feeling ‘‘burned out’’ or depleted after many years of accumulated challenges from managing MS. As one woman with MS said, ‘‘I feel like I’ve just re-invented myself so many times. . .. I feel like my tool bag is empty, I’ve gone to it so many times. . .. I’m physically and emotionally exhausted. . ..
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It’s like, after 27 years of doing this, I don’t know how to do this anymore’’ (F, 51, 27 years). A care partner echoed this concept when describing how accumulated hardships can deplete resilience: ‘‘I think your resilience is done when you’re done, when you’re just through dealing with it. And that happens too’’ (F, 37, 10 years).
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Negative thoughts and feelings Participants also cited a number of negative cognitive and emotional patterns that hinder resilience. One example is the tendency to dwell upon what one can no longer do. One care partner described of her husband, ‘‘there will be months at a time when he’ll focus on the main thing he wants to do in life, which he can’t do anymore. . .. He gets very depressed at the thought of everybody’s helping him all the time and he can’t do anything for anybody else. . .. And when he’s focused on that, he’s not resilient’’ (F, 76, 25 years). Other participants described depression or anger. One man with MS said, ‘‘I’ve seen my career just crash and burn, and I understand I can’t do what I did, and yet, I’m not over that at all. I’m still really angry about it’’ (M, 58, 13 years). One stakeholder noted that some people living with MS are ‘‘consumed by their rage, their fear, their depression, the sadness or the lack of hope’’. In some cases, negative thoughts and feelings can foster a tendency to give up or disengage from activities. One care partner described this in her husband: ‘‘You know, if it was up to him, he’d be dead, basically’’ (F, 65, 6 years).
accommodations is huge’’, explaining how people with MS may be reluctant to use mobility aids in public (F, 37, 10 years). Another care partner described how his wife concealed her MS diagnosis from everyone, even her children (M, 67, 44 years). Avoidance and concealment can aid coping with social stigma in the short term, but can also forestall the use of adaptive strategies that support resilience, such as the use of assistive technologies or the benefits of support from friends and family.
Physical fatigue A final barrier that participants identified is physical fatigue and exhaustion, ‘‘It just is life-sucking’’ (F, 51, 27 years). Similar to resilience depletion, fatigue can interfere with adaptation to MS-related challenges. Participants with MS also described fatigue as a barrier to engaging in wellness-promoting activities, such as exercise, ‘‘when you’re fatigued, it’s really hard to get out and motivate’’ (F, 45, 24 years). One participant described her disappointment during a long-awaited, rare visit with an old friend, ‘‘I was only gonna be up 8 h and I fell asleep three times during dinner and I slept the entire way home from dinner. I was crushed. [These were] people I really wanted to see and interact [with]’’ (F, 51, 27 years). Nearly all participants indicated that MS-related fatigue had a negative impact on their participation in life activities or even daily activities like taking a shower.
Discussion Social limitations Participants described how the social challenges or limitations associated with MS can act as barriers to resilience. Some participants with MS found that they lost friendships or struggled with friends who did not understand their condition. One woman with MS said that ‘‘my friends are exhausted by the wheelchair’’ (F, 51, 27 years). While a care partner said of his wife, ‘‘most of [her friends] have no concept of what MS is’’ (M, 67, 44 years). Others cited unemployment, transportation barriers and fatigue as obstacles to social connection.
Social stigma Some participants and their partners described how stigmas of chronic illness and aging impeded resilience. In particular, stigma drove some individuals to forego using assistive technologies or to conceal their MS from others, ‘‘I wasn’t ready to be [the] white-haired lady with a cane, so I went and got the walking stick instead’’ (F, 62, 16 years). One care partner said that ‘‘refusal of
MS challenges an individual’s ability to be resilient due to its variability in symptoms and impact, unpredictability and potentially accumulating losses. Despite these obvious challenges, resilience is in its infancy of study among individuals living with MS. The present study was the first to explore how people in the MS community (people with MS, their partners and their stakeholders) define resilience and its barriers and facilitators. Themes from our focus groups revealed difficulty defining resilience, but the groups generated a number of interesting exemplar statements and identified five facilitators and five barriers to developing and maintaining resilience. When asked to define resilience, participants in our focus groups had difficulty agreeing upon a concise definition. That does not mean, however, that they lacked an understanding of the elements that are central to resilience; rather, these were conveyed through metaphors, images and examples. Together, these statements emphasized: (a) bouncing back from setbacks repeatedly over time, (b) positive assets (rather
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than deficits) and (c) thriving despite MS (rather than surviving with MS). Our themes are similar to those identified in the broader resilience literature, such as in Bonanno (2004) who suggested that resilience in people with spinal cord injury includes persistence, being able to bounce back, and flourishing in the face of stressors.[7] Similar to our findings, Ploughman et al.’s qualitative study of older people (55 years or older) who had lived with MS for at least 20 years considered resilience an important part of healthy aging.[22] Participants readily identified factors that support resilience. Our participants described using a variety of coping strategies to maintain resilience, such as psychological flexibility, maintaining a social connection, seeking life meaning and employing strategies to manage logistical challenges and physical symptoms. The importance of coping strategies to resilience is well documented in other populations. For example, psychological flexibility was found to be central to successful coping among individuals facing new stressors.[7] In MS, social support has been identified as important for adaptation and better adjustment, both for emotional support and practical support (such as helping with activities of daily living and mobility).[18,31] In addition, social connection and life purpose have been identified as important factors in biopsychosocial resilience models [12] and resilience interventions in other populations target these factors.[32–34] However, participants indicated that thriving in mid-life is not always easy in the face of MS and its associated life changes. Some participants described becoming mentally depleted by the changing demands of MS, which made it difficult for them to adapt to future challenges. This is consistent with the literature on self-regulation and ego-depletion.[35] The challenges associated with the social stigma that participants described are consistent with the literature in people aging with MS [18,36] and aging in general.[37] We found that negative thoughts and feelings can interfere with healthy psychological responding while social isolation and societal stigma can impede full participation and the maintenance of needed social connections. Finally, our participants felt that fatigue was a particularly challenging MS symptom that interferes with resilience. The impact of fatigue for people living with MS is well-documented in the MS literature and interventions to reduce and manage fatigue are plentiful.[38] Consistent with this, chronic fatigue is associated with distress and loss of function in disability populations.[5,35] The facilitators and barriers to resilience provide central targets for resilience interventions. Existing
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psychology interventions have much to contribute to building resilience, as elements of them address facilitators and barriers to resilience. For example, goals of cognitive-behavioural therapy include reducing unhelpful, negative thinking and promoting the use of adaptive coping strategies such as symptom self-management. Acceptance and commitment therapy focuses heavily on staying connected with aspects of life that give meaning to the individual. Many psychological interventions focus more on the individual than on the social context. Our themes revealed a value in focusing on the social context – including fostering social connections and life meaning (which often has a social role component) and addressing social limitations and stigma. Our findings suggest that an intervention for people with MS should be developed to both promote facilitators of resilience and reduce barriers to resilience. Despite the present study’s strengths, it is important to consider a number of limitations. While we noted that we identified common themes, facilitators and barriers across participants and groups, we feel that we fell short of formally meeting criteria for ‘‘saturation’’ – the common point at which a series of focus groups is terminated – due to time and budget constraints that prevented holding additional groups. As with any qualitative research, we are mindful of sources of bias, such as that some of the participants and stakeholders had formal or informal professional relationships with the moderators. Additionally, participants from the men’s and care partner focus groups were already members of MS support groups, and most participants were married, suggesting our findings may not generalize to samples with less existing social support or who do not voluntarily join support groups. Finally, as this was a convenience sample, the participants living with MS and care-partners were comprised of volunteers from a limited geographic region (the masked area) and individuals who were white and had higher levels of education, suggesting that these findings may not be generalizable to other individuals with MS living elsewhere. Despite these limitations, this study shows how, from the viewpoint of people affected by MS, people with MS can maintain resilience in the face of changing and unpredictable circumstances, bouncing back again and again. The unpredictable nature of MS can and does present unique challenges to resilience, especially during middle age. However, this study and the literature suggest a number of avenues for promoting resilience in this population. Interventions aimed at increasing resilience have the potential to enable people with MS to live their lives to the fullest as they age.
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Acknowledgements The authors would like to thank everyone who participated in our focus group discussions. We also wish to thank Dagmar Amtmann, PhD for her assistance in co-moderating one of the focus group discussions.
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Disclosure statement The authors have no financial support or conflicts of interest to report. The contents of this article were developed under a grant from the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR grant number 90RT5023-01-00). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of this article do not necessarily represent the policy of NIDILRR, ACL, HHS, and you should not assume endorsement by the Federal Government.
References [1] Society NMS. MS Prevalence; [cited 2015 Apr 27]. Available from: http://www.nationalmssociety.org/ about-the-society/ms-prevalence. [2] Montel SR, Bungener C. Coping and quality of life in one hundred and thirty five subjects with multiple sclerosis. Mult Scler. 2007;13:393–401. [3] Alschuler KN, Beier ML. Intolerance of uncertainty in multiple sclerosis: shaping an agenda for future research. Int J MS Care. 2014;17:153–158. [4] Molton IR, Hirsh AT, Smith AE, et al. Age and the role of restricted activities in adjustment to disability-related pain. J Health Psychol. 2014;19:1025–1034. [5] Molton IR, Terrill AL, Smith AE, et al. Modeling secondary health conditions in adults aging with physical disability. J Aging Health. 2014;26:335–359. [6] Barak Y, Achiron A. Happiness and personal growth are attainable in interferon-beta-1a treated multiple sclerosis patients. J Happiness Stud. 2011;12:887–895. [7] Bonanno GA. Loss, trauma, and human resilience: have we underestimated the human capacity to thrive after extremely aversive events? Am Psychol. 2004;59: 20–28. [8] Moore RC, Eyler LT, Mausbach BT, et al. Complex interplay between health and successful aging: role of perceived stress, resilience, and social support. Am J Geriatr Psychiatry. 2015;23:622–632. [9] Silverman AM, Molton IR, Alschuler KN, et al. Resilience predicts functional outcomes in people aging with disability: a longitudinal investigation. Arch Phys Med Rehabil. 2015;96:1262–1268. [10] Terrill AL, Molton IR, Ehde DM, et al. Resilience, age, and perceived symptoms in persons with long-term physical disabilities. J Health Psychol. 2014;1:11. [11] Caspi A, Sugden K, Moffitt TE, et al. Influence of life stress on depression: moderation by a polymorphism in the 5-HTT gene. Science 2003;301:386–389. [12] Yeung EW, Arewasikporn A, Zautra AJ. Resilience and chronic pain. J Soc Clin Psychol. 2012;31:593–617.
[13] Smith BW, Zautra AJ. Vulnerability and resilience in women with arthritis: test of a two-factor model. J Consult Clin Psychol. 2008;76:799–810. [14] Senders A, Bourdette D, Hanes D, et al. Perceived stress in multiple sclerosis: the potential role of mindfulness in health and well-being. J Evid Based Complementary Altern Med. 2014;19:104–111. [15] Tan-Kristanto S, Kiropoulos LA. Resilience, self-efficacy, coping styles and depressive and anxiety symptoms in those newly diagnosed with multiple sclerosis. Psychol Health Med. 2015;20:635–645. [16] White B, Driver S, Warren AM. Resilience and indicators of adjustment during rehabilitation from a spinal cord injury. Rehabil Psychol. 2010;55:23–32. [17] Yorkston KM, McMullan KA, Molton I, et al. Pathways of change experienced by people aging with disability: a focus group study. Disabil Rehabil. 2010;32:1697–1704. [18] DiLorenzo TA, Becker-Feigeles J, Halper J, et al. A qualitative investigation of adaptation in older individuals with multiple sclerosis. Disabil Rehabil. 2008;30:1088–1097. [19] Dennison L, Moss-Morris R, Yardley L, et al. Change and processes of change within interventions to promote adjustment to multiple sclerosis: learning from patient experiences. Psychol Health. 2013;28:973–992. [20] Pakenham KI. Benefit finding in multiple sclerosis, and associations with positive and negative outcomes. Health Psychol. 2005;24:123–132. [21] Boland P, Levack WM, Hudson S, et al. Coping with multiple sclerosis as a couple: ‘peaks and troughs’ – an interpretative phenomenological exploration. Disabil Rehabil. 2012;34:1367–1375. [22] Ploughman M, Austin MW, Murdoch M, et al. Factors influencing healthy aging with multiple sclerosis: a qualitative study. Disabil Rehabil. 2012;34: 26–33. [23] Arksey H, Knight P. Interviewing for social scientists. London, UK: Sage Publications; 1999. [24] Bloor M. Techniques of validation in qualitative research: a critical commentary. In Millar G, Dingwall R, editor. Context and method in qualitative research. London, UK: Sage Publications; 1997. p. 37–50. [25] Holloway I. Basic concepts for qualitative research. Oxford: Blackwell Science; 1997. [26] Ehde DM, Wegener ST, Williams RM, et al. Developing, testing, and sustaining rehabilitation interventions via participatory action research. Arch Phys Med Rehabil. 2013;94:S30–S42. [27] Moustakas C. Phenomenological research methods. Thousand Oaks (CA): Sage Publications, Inc; 1994. [28] Creswell JW. Qualitative inquiry and research design: choosing among five traditions. Thousand Oaks, CA: Sage Publications; 1998. [29] Hycner RH. Some guidelines for the phenomenological analysis of interview data. In A. Bryman A, Burgess RG, editor. Qualitative research. Vol. 3. London (UK): Sage Publications; 1999. p. 143–164. [30] Dedoose. Web application for managing, analyzing, and presenting qualitative and mixed method research data. 2014. [cited 2015 Feb 1]. Available from: www.dedoose.com.
BOUNCING BACK
Downloaded by [Nanyang Technological University] at 18:43 13 May 2016
[31] Tabuteau-Harrison SL, Haslam C, Mewse AJ. Adjusting to living with multiple sclerosis: the role of social groups. Neuropsychol Rehabil. 2016;26:36–59. [32] Moss-Morris R, Dennison L, Landau S, et al. A randomized controlled trial of cognitive behavioral therapy (CBT) for adjusting to multiple sclerosis (the saMS trial): does CBT work and for whom does it work? J Consult Clin Psychol. 2012;81:251–262. [33] Steinhardt MA, Mamerow MM, Brown SA, et al. A resilience intervention in African American adults with type 2 diabetes: a pilot study of efficacy. Diabetes Educ. 2009;35:274–284. [34] Burton NW, Pakenham KI, Brown WJ. Evaluating the effectiveness of psychosocial resilience training for heart health, and the added value of promoting physical
[35]
[36]
[37]
[38]
9
activity: a cluster randomized trial of the READY program. BMC Public Health. 2009;9:427. Muraven M, Baumeister RF. Self-regulation and depletion of limited resources: does self-control resemble a muscle? Psychol Bull. 2000;126:247–259. Finlayson M, van Denend T. Experiencing the loss of mobility: perspectives of older adults with MS. Disabil Rehabil. 2003;25:1168–1180. Goins RT, Jones J, Schure M, et al. Older adults’ perceptions of mobility: a metasynthesis of qualitative studies. 2015;55:929–942. Asano M, Berg E, Johnson K, et al. A scoping review of rehabilitation interventions that reduce fatigue among adults with multiple sclerosis. Disabil Rehabil. 2015;37: 729–738.
