Adjusting to living with multiple sclerosis: The role of social groups
Sophie L. Tabuteau-Harrison1, Catherine Haslam2 and Avril J. Mewse1
1
2
University of Exeter, Exeter, United Kingdom
University of Queensland, Brisbane, St Lucia, Australia
Corresponding Author:
Avril Mewse, Washington Singer Laboratories, Psychology, College of Life and
Environmental Sciences, University of Exeter, Exeter, EX4 4QG, United Kingdom.
Email: A.J.Mewse@exeter.ac.uk
Running head: Social groups and MS adjustment
Key words: multiple sclerosis, adjustment, social identity
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Abstract
Multiple Sclerosis (MS) is typically associated with life-long adjustment to wide-ranging,
changeable symptoms and psychosocial disruption as all relationships are changed or lost.
Despite accumulating evidence, the therapeutic impact of harnessing social group factors in
MS management and rehabilitation remains largely unexplored. We investigated their role
specific to adjusting to MS. A qualitative approach was used with thematic analysis to induce
a rich and developing account of the impact of social groups on adjustment for 15 individuals
with MS. An adjustment questionnaire was used to provide a framework for its organization
and discussion. The analysis revealed three themes associated with loss, change and social
processes that influenced adjustment. These features distinguished between those who were
more or less able to adjust, and resonated well with processes previously identified as central
to identity loss and change. Social factors enhanced adjustment through easing transition
between pre- and post-MS diagnosis lives. Notably, maintenance of pre-existing social roles
and relationships was critical in providing a meaningful basis for integrating the old with new
senses of self. The capacity to join new social groups was as key in adjustment as was
awareness of having access to multiple social groups to avoid being solely defined by MS.
These concepts provided a more stable grounding upon which to nurture value systems and
employ collective support to counter the negative consequences of living with MS.
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Adjusting to living with multiple sclerosis: The role of social groups
Around 100,000 people are diagnosed with Multiple Sclerosis (MS) in the UK, and it
is the most prevalent chronic degenerative disease among young adults (MS Trust, 2014).
Inflammation of the nervous system results in a wide range of unpredictable physical,
psychological, cognitive, emotional and behavioral symptoms and irreversible accumulation
of disability (Chiaravalloti & DeLuca, 2003; Dutta & Trapp, 2007). Growing research
suggests social factors play an important role in maintaining health and adjusting to a range
of clinical conditions; from post-myocardial infarction (Berkman, 1995), MS (Mohr,
Goodkin, Nelson, Darcy, Weiner, 2002), and stroke (Boden-Albala, Litwak, Elkind, Rundek,
& Sacco, 2005). Despite the accumulating evidence, the impact of social factors on MS and
the therapeutic potential of harnessing social strategies to MS management and rehabilitation
remain largely unexplored (Jelinek & Hassed, 2009; Thomas, Thomas, Hillier, Galvin, &
Baker, 2006). The purpose of this article is to explore the role of social factors specific to
adjusting to living with MS using qualitative methodology.
Presentation and impact of MS
MS typically begins with sporadic inflammation of the nervous system, ultimately
leading to demyelination (Hemmer, Nessler, Zhou, Kieseier, & Hartung, 2006) and an
extremely variable disease course characterized by four different patterns of neural
dysfunction: benign MS with long periods of remission and good prognosis in terms of
dysfunction rate, relapsing-remitting (RR) with intermittent periods of remission and relapse,
which converts to secondary progressive (SP) when the rate of dysfunction becomes more
steadily progressive, and primary progressive (PP) with evidence of continual worsening of
symptoms (Lubin & Reingold, 1996). In addition to a changeable range of symptoms
including pain, fatigue, incontinence, blindness, and depression (Mohr & Cox, 2001),
diagnosis signifies a life-time of confronting and attempting to adjust to profound
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psychosocial disruption as personal, professional and family roles and relationships are either
changed or lost (Bogosian, Moss-Morris, Yardley, & Dennison, 2009; Pakenham & Cox,
2009). Indeed, MS typically strikes between 20 to 40 years of age, a crucial stage in the
formation of relationships and establishment of working and family lives (McCabe & Di
Battista, 2004). Associated lack of purpose and meaning in life, social withdrawal and
isolation are routinely reported (Pakenham & Burnsall, 2006).
Adjustment to MS
Participating in meaningful social activity is crucial to maintaining our sense of being
human (Dijkers, Whiteneck, & El-Jaroudi, 2000). In a review of the MS literature, Mohr and
Cox (2001) make the striking observation that adjustment outcomes are more strongly
associated with the ability to engage in social roles than with the impact of physical
impairment. Consistent with this, subsequent research highlights the critical role that social
support plays both in facilitating adjustment in general (e.g., Sullivan, Wilken, Rabin,
Demorest, & Bever, 2004), and in protecting mental health and well-being (McCabe,
McKern, & McDonald, 2004; McCabe, Stokes, & McDonald, 2009). Nevertheless, there is a
need to recognize that the ability to engage with, and benefit from, meaningful social
participation is strongly influenced by multiple factors in MS (Baylor, Yorkston, Bamer,
Britton, & Amtmann, 2010). In response, several authors have advocated qualitative
investigations to gain the full significance of complex under-explored personal territory, as
this is not readily inferred from objective measures alone (e.g., Baylor et al., 2010; Bringfelt,
Hartelius, & Runmarker, 2006; Yorkston, Baylor, Klasner, Deitz, Dudgeon, Eadie, &
Amtmann, 2006).
While there are few qualitative investigations of adjustment in MS populations, two
recent studies are of particular relevance — both addressing the general experience of coping
with MS and its impact on self-beliefs and self-understanding in early (Irvine, Davidson, Hoy
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& Lowe-Strong, 2009) and more advanced stages (Boeije, Duijnstee, Grypdonck, & Pool,
2002) of the illness. Similar themes of initially ignoring or denying the condition emerged in
both studies; characterised by concealment, as evident in reports of coping with other forms
of trauma (Jones, Jetten, Haslam & Williams, 2012), and avoidance of support groups.
Additional themes captured feelings of uncertainty, the physical challenges, loss of valued
roles, and changes in interpersonal relationships (particularly with partners) — all of which
impacted negatively on self-esteem and self-confidence. Interestingly, whether having lived
with the condition for five (Irvine et al., 2009) or more (Boeije et al., 2002) years, some
people found themselves more accepting of MS over time through learning to become more
appreciative of simple pleasures, the better days, and of the support groups they were initially
reluctant to join (Irvine et al., 2009). Nevertheless, there were some aspects of the condition
that were particularly difficult to come to terms with; most notably, the dependence on others
(Boeije et al., 2002).
Although these papers go beyond the existing quantitative research to capture the
experience of adjusting to MS, there was limited engagement with issues of identity change
and reconstruction in broader social terms. The experiences described in these papers focus
primarily on interpersonal relationships, with support from partners particularly important,
and on changes to individual roles (as worker, parent, partner) and activity levels. Apart from
brief reference to support groups, there was little exploration of changes to other social group
relationships (i.e., work groups, friendship networks, family groups, sporting groups, interest
and hobby groups, etc) and how these influence coping with MS. This constitutes a major gap
for two reasons. First, there is a substantial evidence base showing that social group
membership plays a critical role in self-understanding (Tajfel & Turner, 1979; Turner, 1985;
Turner, Hogg, Oakes, Reicher, & Wetherell, 1987), and by ignoring these we can only ever
gain a rudimentary understanding of the emergent consequences of MS on one’s sense of
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self. Second, there is a growing evidence that having a strong sense of belonging to others in
social groups has a positive impact on coping with life transitions arising from other forms of
illness and trauma (e.g., Haslam, Holme, Haslam, Iyer, Jetten, & Williams, 2008;
Ownsworth, 2014; Ownsworth & Haslam, in press). Yet in the MS field to date, such
investigation has been confined largely to quantitative study of the impact that identification
with support groups has on the well-being of people with MS (Wakefield, Bickley, & Sani,
2013). The present paper attempts to address this gap by extending exploration of the impact
of MS on social group relationships.
Understanding the role of social factors in adjustment
Although evidence of the positive effects of social relationships is undeniable, there is
reluctance within standard health care to help people draw upon these resources
systematically to protect and facilitate their adjustment (Haslam, O’Brien, Jetten, Vordemal,
& Penna, 2005; Jelinek & Hassed, 2009). Moreover, there is limited understanding of
specific “social” processes that underlie adjustment, particularly in responding to life change,
largely due to the lack of a clear theoretical framework through which to investigate and
explain these benefits. Indeed, the MS adjustment literature has relied mainly on the models
of stress and coping proposed by Folkman & Lazarus (1986, 1988) to quantitatively examine
the association between problem- and emotion-focused coping strategies and adaptive
behaviors (e.g., Pakenham, 1999; Sullivan et al., 2004). These relationships, though, are not
always clear in people living with progressive disease, and it is argued that such
individualistic, quantitative analysis cannot fully capture important compounding MS factors
and social processes (Mohr & Cox, 2001; Sullivan et al., 2004; McCabe et al., 2009; Baylor
et al., 2010).
The social identity approach to health (Haslam, Jetten, Postmes, & Haslam, 2009;
Jetten, Haslam, & Haslam, 2012), that draws on social identity and self-categorization
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theories (Tajfel & Turner, 1979; Turner, 1985), articulates the contribution of social
processes and goes further to identify pathways that might account for positive adjustment
outcomes. Central to this theorising is the idea that social group relationships (whether peer,
family, work, or indeed, as a person with MS) inform our self-understanding, and in so doing
guide how we think, feel and act in different contexts. While many psychological theories
stress the importance of a person’s individuality in terms of their roles and traits (one’s sense
of “I” and “me”), this approach emphasizes the importance of an internalized sense of shared
identification and belonging with others (one’s sense of “we” and “us”). The social groups
we value provide a basis for development of our social identity, or social self; informing what
we stand for with respect to our values and goals, promoting our sense of worth and
validation, and providing a basis for security and companionship. So, when one’s identity as
a person with MS is salient, then this will influence their thoughts and behaviour to the extent
they may be more willing to seek and accept support from others with MS, in the context of
sharing common fate and experience. Indeed, when the MS identity is internalised as part of
the self, then one’s willingness to give support will be especially strong, as by helping other
people with MS you are advancing both the interests of the self and the wider group. In the
absence of such identification, as might be evident in the early stages of MS diagnosis where
the goal may be to conceal or deny illness, there is neither basis or motivation to seek or
provide support.
Particularly relevant to understanding identity processes in response to life change, is
the Social Identity Model of Identity Change (SIMIC; Jetten, Haslam, Haslam, &
Branscombe, 2009; Jetten & Pachana, 2012). Drawing upon the above theorising, the model
emphasizes the importance of particular group processes in protecting well-being during life
change. Highlighted is the central role that multiple group membership plays in adjustment as
a basis for (a) increasing access to a range of sources of social support, (b) increasing the
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likelihood that at least some previous groups will be maintained and so providing a sense of
continuity of the self over time, and (c) developing skills to join new groups and take on new
identities when old groups are either lost or no longer desirable following life change. Also
important is the degree of compatibility between new and existing groups, in that the greater
the perceived integration of old with new groups, the more positive our appraisal of identity
change, and the greater our willingness, skills and resources to form new social identities. It
is argued that these processes provide support, grounding, belonging and continuity;
effectively buffering negative consequences of social disruption that life changes impose as
demonstrated in the context of coping with stress (e.g., Jetten, Haslam, Iyer, & Haslam,
2009), moving to residential care (Haslam, et al., 2010; 2014) and coping with other
neurological conditions (e.g., Haslam et al., 2008; Jones et al., 2010; 2012).
While much has been published from the quantitative perspective on identity change
processes, to our knowledge no natural setting exploration of such social factors critical to
MS adjustment has been considered. As an important first step, we draw upon qualitative
methodology to unravel some of the complexities of context, and explore whether people’s
experiences of adjustment are influenced by social group factors.
Method
Design
Prior to conducting the present study, a small pilot study was undertaken with a focus
group of eight MS support group members, and this confirmed the important role that social
relationships play in adjustment. Furthermore, in disclosing sensitive and complex contextual
components that facilitated or constrained this relationship, the need to locate the present
study within an explorative qualitative design was highlighted. We therefore used one-to-one,
semi-structured interviews carried out from a realist perspective, not rigidly adhering to
interview questions, to induce a developing account of the impact of social group experiences
8
on adjustment. A purposive sampling strategy and thematic analysis were used to drive the
discovery of experiences and provide a rich account of data (Braun & Clarke, 2006). The
GHQ-12 questionnaire (Goldberg & Williams, 1978), indexing mental adjustment over the
past few weeks, was used to provide a broad framework for the organization and discussion
of findings. For the purposes of this study, the instructions for this measure were modified
slightly to assist responding in the context of the unpredictable nature of MS (i.e.,
emphasizing responses that most nearly apply to participants) and capture perceptions of
adjustment in the recent period (over the last few weeks). Instructions were as follows:
“We should like to know if you have any medical complaints and how your
health has been in general over the past few weeks. Please answer all the
following questions by verbally indicating the answer which you think most
nearly applies to you. Remember that we want to know about present and recent
complaints, not those you had in the past.”
Participants
Members of local MS support groups were asked to participate in the study through MS
Society web site and branch newsletter. They were required to be aged 18 years or over with
a clinical diagnosis of MS, live in South West England, and have the ability to communicate
and consent independently. Ethical approval was obtained from the researchers’ University
Ethics Committee (Psychology) prior to recruitment. One respondent didn’t meet eligibility
criteria and another withdrew due to bereavement, resulting in a sample of 15 participants
aged between 42 to 67 years (53.80 SD 7.12). Consistent with MS prevalence data (MS
Trust, 2014) participants were predominantly women (11 women, four men). The period of
MS diagnosis ranged from one to forty years (14.73 SD 11.02) and reflected a variety of MS
categories and symptoms (see Table 1).
Insert Table 1 about here
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Procedure
On receipt of consent, interviews at participants’ homes were arranged. Participants
were first re-introduced to the study purpose and shown an aide-memoire that would be
displayed throughout the interview to help bear in mind what meaningful social groups
constituted. They were asked to answer demographic and then GHQ-12 questions before
taking part in a semi-structured interview. The interview schedule (see Table 2) addressed
four topics: exploration of meaningful social relationships (types, natures, influences,
changes), the influence of MS on these relationships, perceptions of the impact of MS on
others’ social relationships, and the influence that social relationships might have on how MS
is perceived. Questions were repeated or reframed as necessary to ensure understanding.
Interviews were audio-taped and lasted between 45 to 75 minutes. Finally, participants were
debriefed.
Insert Table 2 about here
The accuracy of verbatim transcriptions was verified by all authors. Following the
guidelines of Braun & Clarke (2006), the research topic was developed using a blend of
inductive and theoretical analyses, initially staying close to data to extract semantic concepts
for each participant. These were then merged to form an account of prevalent codes across
participants. Subsequent analysis extracted latent themes relating to sensitized social
concepts. This process involved a continuous cycle of transcription, re-reading, extraction
and review, moving back and forth between data-sets until themes accurately reflected
semantic and latent conceptualizations articulated in the data. To ensure rigor, we reviewed
data to enhance accuracy and broaden perspective, and cross-checked codes and themes
(Cresswell, 2009).
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Framing the Qualitative Data
Adjustment is a complex construct comprising multiple components and thus, to
provide a framework for the organization and discussion of findings, the GHQ-12 was used.
These data were scored bi-modally across participants’ responses (1=0, 2=0, 3=1, 4=1)
providing an overall score between 0 and 12. Consistent with guidelines, those scoring above
three were categorized as experiencing ‘challenged adjustment’ (n=3), defined broadly here
as experiencing difficulties coping with MS in recent weeks. Those scoring three and below
were categorized as experiencing ‘good adjustment’ (n=12), indicating better coping with MS
in recent weeks. The qualitative findings appeared to support this classification except for
two participants. In scoring “3”, both fell in the ‘good adjustment’ category, but their data
tended to resonate more closely with those experiencing ‘challenged adjustment’. Therefore,
to more clearly illustrate their experiences and elaborate themes, they were re-classified as
experiencing ‘unclear adjustment’ (n=2). These classifications were used to guide the
presentation of findings, with experiences associated with good adjustment presented first,
followed by those whose adjustment was experienced as challenging or unclear. This proved
helpful in highlighting any common or discriminating factors across the data, and aided
discussion of findings.
Results
The thematic analysis identified ten prevalent concepts grouped into three key themes.
These were applicable to both women and men, with common and contrasting aspects to
broad adjustment categories (see Table 3).
Insert Table 3 about here
The three themes encompassed different social processes that participants described
in adjusting to living with MS. Theme 1 describes loss and change within important social
roles and relationships in response to disability imposed by MS. Theme 2 captures the
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positive and negative experiences participants had with social groups that influenced their
decision to either engage with, or avoid them. Theme 3 depicts social participation as
distraction, in association with benefits and barriers that this simultaneously raised.
1. Loss and change in social roles and relationships
Losing parts of yourself. Many of those with ‘good adjustment’ to MS described
losing a wide range of function and self-care ability. One of them described blindness in one
eye and losing leg function as “just the normal routine” (C,F,56)1. Another said, “You may
lose your speech and much more, so happiness is the greatest benefit of all” (V,M,49). A
third said, “You’ve got to wave goodbye to bits of you. You’ve got to accept that” (M,M,55).
Though, not everyone expressed this sense of acceptance. A person experiencing
‘unclear adjustment’ described constantly “looking back” at what she had lost (J,F,48), and
one participant with ‘challenged adjustment’ said, “I want to feel as though I’m everything I
once was” and feared the future in terms of “pain and worsening symptoms,” changing into a
“cantankerous, horrible person” and being abandoned by her husband (BA,F,53). Another felt
that progression from RR to SP MS had “almost destroy[ed]” her. She said, “Within a couple
of months, I was trying to commit suicide” (IH,F,51).
Changing family relationships. All participants more able to adjust to MS described
having to come to terms with loss within their marriage, which they associated with
becoming “less able”. One person described his wife telling him he was not the person she’d
married, with “the sex-side of things” deteriorating (V,M,49). For similar reasons of reduced
capacity, valued family roles were also diminishing. To illustrate, another participant
indicated that she had maintained her home and gardens in the past, but now her husband
would say, “I seem to do everything around here!” and “You’re so slow!” (Q,F,51). Another,
now separated, portrayed the escalation of an abusive relationship: “[We were] ready to go
somewhere and a spastic attack hit. I remember [my partner] screaming in frustration and
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kicking me. That’s how she dealt with it” (D,M,49). Yet another stated, “As I slowly
deteriorated, [my husband] felt I was becoming a burden” and so they had gone their
“separate ways” (R,F,67). These examples highlight the great impact that deteriorating ability
had on their spousal relationships and illustrate the frustrations experienced on both sides
leading, in some cases, to separation.
More generally though, family members increasingly helped with day-to-day
activities, transport and access, enabling maintenance and continuity of broader family
relationships and roles. Some ensured vehicles were MS-friendly to support continued family
involvement. For two participants with ‘good adjustment’, family were “always there at the
end of the day” (B,F,49) providing reassurance, and this bolstered their “strength and selfworth” (Q,F,51). One of them said, “When they depend on me I feed on it!” (Q,F,51) and the
other, “It doesn’t matter if I’m sitting there ‘goo-gah’, I feel I’m still ‘The Mum,’” and her
children didn’t “begrudge” her being different to other parents (B,F,49). Balanced against the
positive effects of being able to maintain their family role, there was also the negative
experience at times among those with ‘good adjustment’ to “try hard not to be a nuisance”
(Q,F,51). One said, “I’m ferociously determined to pull my weight in the relationship, but I
can see the agony in their faces” (D,M,49). These efforts were sometimes in vain, and in the
case of two participants more able to adjust to MS, they chose to disassociate from their
mothers to escape what were perceived as constant negative interactions (B,F,49; D,M,49).
What this illustrates is that even in the context of good adjustment, all had experienced
change or loss in family relationships which they attributed to MS.
Most participants experiencing ‘challenged adjustment’ described receiving some
support through on-going family involvement. Though, one described a negative discrepancy
between her pre-diagnosis and current self, expressing a need to be “lifted out of obsessional,
nasty thinking and jealousies.” She said, “I need lots of reassurance from [my husband] about
13
still being the woman he married. I compare myself with other women and think ‘He must
see the difference!” She asked herself, “What’s my life for? What have I to offer?”
explaining, “It’s not what I mapped out for myself in life. I always thought I would be the
carer” (BA,F,53). Another experienced the withdrawal of support from a sister as “a crushing
blow.” Her sister had thought: “I can’t go through another illness in the family” (G,F,59).
One person with ‘unclear adjustment’ received little family support and continually tried “to
help everybody else” (L,F,67). Another’s increased dependency on their mother and partner
had produced “a great big gap” between them, and the deterioration in her relationship with
her sons had undermined coping efforts. One son (now living elsewhere) had resented her
inability to do “normal things” and so would beat her. Subsequently, another son treated her
“with no respect at all” (J,F,48).
Career changes. All participants noted the impact of MS on their careers. Those more
able to adjust to this change, associated the loss with reduced practical abilities, social
interaction and earnings. One said, “I’m a qualified [craftswoman] and I can’t even pick up a
bloody pen” (E,F,52), and another could not “mentally handle problems” (V,M,49). Balanced
against this loss, most with ‘good adjustment’ described positive career-based experiences as
a result of MS. One gained the opportunity for training, which had bolstered her “confidence
and social skills” to the extent she had resumed her work role on a voluntary basis (B,F,49).
Another handed his business “onto the next generation” so that he and son could continue to
“make it work” (V,M,49). A third transformed his prior community work into
Neighbourhood Watch activities to continue to enjoy “encouraging, thanking and helping
people” (RT,M,42). Another had actually been hit on the head causing him to stop midcareer. He said, “At the time, I could have pulled him limb from limb. But I look back and
think “You did me a lot of good. I’ve probably lived a lot longer because of him.” He
continued, “MS has made me what I am today. I’d become very cold and hard. MS has saved
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my life.” Through transference of coping strategies, he now tells himself, “You’ve got
enough willpower to get through, no matter how bad it gets.” Through continuing as an artist,
this participant was able to gain some self-continuity saying that, “Even when drooling and
wobbling, people are still interested in me as a person” (D,M,49).
In contrast, someone with ‘challenged adjustment’ found the impact on work
demeaning, now dismissing what she does because it is not paid work but volunteering. She
said, “I’m at the bottom because MS has knocked-out my working life and where I fit in”
(BA,F,53). Another acknowledged that her career-loss had enabled the fulfilment of her
dream of having a dog. Though, she described needing “to get back on track” because
without a valued work role, “days, weeks and months” were “slipping by.” She wanted a
volunteer role to structure her life, but feared being unreliable (G,F,59). A person with
unclear adjustment described her strong community volunteer role as “the only thing” she
had, and yet, in spite of this, felt like “a nobody” (L,F,67). In contrast with those experiencing
‘good adjustment’, illustrated here is a marked difficulty in harnessing career change or loss
as an opportunity for self-continuity.
Changes in Friendships. One participant more able to adjust expressed “a tendency
[for people with MS] to lose a lot of old, close friends” (M,M,55). Balanced with experiences
of loss, most with ‘good adjustment’ described their ability to maintain general friendships
and links of connection. One portrayed her “whole social system” of friends and neighbours
“gelling” together (R,F,67). Another two described long-term hobby- and work-colleagues
literally supporting them at times (D,M,49; RT,M,42): “I became really dizzy and realised the
manager had his arm under me. It’s needs-must at that moment” (D,M,49).
In contrast, those with ‘challenged adjustment’ expressed problems in maintaining
friendships. One said, “Like me, they’re scared of what’s to come. So, they put their heads in
the sand .... they never want to read up on it, or understand it” (IH, F,51). Another wasn’t able
15
to explain to friends her reasons for withdrawing: “You know what it’s like at restaurants
when sometimes it takes hours. That to me is torturous. But how do you explain that? They’ll
just think you’re miserable” (BA,F,53). Similarly, despite a person with ‘unclear adjustment’
describing her social networks as “a life-line”, she wouldn’t talk with friends about problems
because they found her traumatic history “very hard,” and as a result she felt unable to draw
upon the collective support she facilitated for others (L,F,67). Another spoke frankly about
being unable to maintain friendship networks: “I had a few very good friends until I was
struck down with MS. Suddenly, they’ve never been near me and it became very lonely”
(J,F,48). Thus, the contrast here with those experiencing ‘good adjustment’, is the intense
difficulty in maintaining supportive friendships, which adds to one’s increased sense of
loneliness.
Changing relationship with society. Interestingly, it was only among those with ‘good
adjustment’ who described an impact beyond interpersonal relationships and in particular, a
changed relationship with society. In this they highlighted their awareness of the social
stigma of MS, but responded with some resilience and pride. Much of this was reflected in
their frustration over “the ignorance of the public” in misattributing MS symptoms. One
participant noted that, “[The public] will only see what they want to see. And that’s the other
thing about it: It’s what they’re allowed to see. People with MS have got pride!” (M,M55).
This quote reflected the necessity of giving greater thought to how they were perceived,
sometimes covering up symptoms to be more accepted by others. One participant in
particular described her husband defending her use of a disabled parking space. He protested,
“But my wife’s disabled!”, and the challenger responded, “Oh, like hell! On the back of a
[motor] bike like that?!” This participant concluded, “She was sorry when she saw me
produce a walking stick!” (E,F,52). Another participant felt her neighbours thought she was
“lazy.” And she often would “laugh-off” symptoms: “When I’m tripping-up I say: ‘Who put
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that step there?!’ When I get the ‘drunk-bit’, I’m saying: ‘I shouldn’t have had that last
vodka!” (B,F,49). Presenting in this way, provided a means to portray physical complaints as
something not so different from what others in society can experience.
To summarise, in the transition towards becoming less able, all participants
experienced relationship change and loss across a range of networks. This, together with
perceived changes in empathy and support (e.g., from partners who leave or demean them, or
through child or sibling rejection) had a profound impact on ability to cope with the
consequences of MS. Those who were more able to adjust were distinguishable in harnessing
important social relations to maintain valued social roles (e.g., within their family and
workplace); easing the life transition. These participants described more opportunities to
maintain the roles and relationships they valued, which may in turn have contributed to their
sense of self, or identity, continuity (e.g., still being mum in the family despite MS). In
contrast, those finding adjustment more challenging felt more uncomfortable in their social
roles, and experienced role distortions and incompatibility with their pre-diagnosis selves. In
this context it is difficult to be open to, let alone harness, the support offered by others and
only adds to the challenge of adjustment.
2. Engaging with, or avoiding, others
Group engagement. The majority of participants emphasized the importance of
engaging with, and sharing experiences with others who also lived with MS, in the context of
both understanding the condition and learning how to modify their behavior in response to
MS. One participant among those with ‘good adjustment’ said, “[talking to others with MS]
helps me come to terms with it . . you’re not embarrassed, so you can get through that
barrier.” He described how “laughing things off” and being encouraged to “push himself” had
enabled “adjustment and learning to do things differently.” He found it easier shopping with
“another MS person” because they stopped and socialized, whereas his wife struggled with
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“everything moving slower” (V,M,49). Another stated, “I thought a symptom was just me,
but somebody with MS will say, ‘Yes, I get that!’ and the next minute, you have six people
…. So you’re not on your own” (B,F,49). This notion of common fate, “all being in the same
predicament” (C,F,56), was more often expressed by those experiencing ‘good adjustment’.
This came through in comments like “You speak the same language” (V,M,49), and, “It’s just
like our own family” (R,F,67). Two additional participants described working collaboratively
with others in the process “fighting not to get worse or more dependent” (D,M,49) and using
“positive self-talk” (Q,F,51). Another said of her MS social group, “If we’ve been poorly, we
listen and talk about it, and then just laugh and joke” (C,F,56). Another said, “We all look
after each other. We’re interested in each other” (R,F,67).
Most participants, irrespective of adjustment classification also benefited from some
“non-MS friends”, though there were more examples of these experiences of other social
relationships from people who were more able to adjust. Two participants with ‘good
adjustment’ pointedly described continuing to share activities and conversations with
“normal” people “in the normal world” (Q,F,51; E,F,52) in an attempt not to be defined
solely by the disease. Another two, indicated they deliberately worked at being part of other
social groups despite their impaired vision and mobility — keeping up with the religious
fellowship group as a driver for one to enhance his quality of life and ensure continued
personal growth (RT,M,42), and with sports membership in the case of another, to “maintain
relationships with the same people” and form some new connections with others through the
group (Z, F,49). The importance of non-MS groups came out clearly for another with
‘unclear adjustment’ who said “They’re usually there for me when I need to talk about things
apart from MS” (L,F,67).
Group avoidance. Not all social groups appeared to enhance adjustment. Most
participants with ‘good adjustment’ indicated that the ‘wrong’ company was problematic.
18
Indeed, one person who was well adjusted indicated they avoided people with MS (PwMS)
because “they br[oke] down barriers built-up in trying to keep going” (D,M,49). Another
described “talking about MS” as a “hindrance” to getting on with life. Elaborating on this
point she said, “People who go to MS groups can’t get on with their life normally and you
think ‘Why don’t they just shut up?!’ I’ve got this disease. I don’t want it in my face!” She
described deliberately withdrawing from PwMS, calling it her “lone-wolf strategy”, to
minimize the impact of MS. Though, at the same time, she expressed some sadness at having
a small social circle (E,F,52). This also featured in descriptions of some with ‘challenged
adjustment’, with one person indicating they “cut off” social links when “dispirited [and]
despondent” in order to avoid feeling “a failure” (G,F,59). More generally, participants
avoided those who wouldn’t address their problems, with one person more able to adjust
saying, “Some PwMS moan all the time and I think, ‘Oh, give it a rest!’” (B,F,49)
In summary, most participants stressed the importance of maintaining connections
with MS groups in the process of coming to learn how best to live with MS. Though, those
more able to adjust were more likely to challenge those groups and were mindful that the
‘wrong’ company could de-rail their coping efforts. This highlights greater social strategising
among these participants, whose engagement was guided by the perceived value of these
groups in meeting their goals, and contrasts with the descriptions of those with adjustment
difficulties who rarely experienced such agency.
3. Social participation as distraction
Benefits of active participation. The majority of those with ‘good adjustment’
described social distraction as an important antidote to “isolation” (Z,F,49) and “sitting
within four walls” (C,F,56). Indeed, they stressed that their social networks provided good
distraction from thinking about the downside of MS. One participant described how meeting
and conversing with people helped “relax the brain and take away tension” (V,M,49).
19
Another said, “Rather than moaning, getting out and having a good laugh is something we
can do, and forget about illness”, and that social “busyness” (such as dog walking and coffee
with friends) prevented her feeling “down in the dumps” (C,F,56). Yet another said, “I feed
off other people. You need that social interaction, that energy, to keep going” (D,M,49).
Active participation also appeared to help people manage their symptoms. One participant
found that line-dancing had maintained her co-ordination (C,F,56). Another found that riding
with disabled children had improved his balance and enabled him to come to terms with
“losing so much” (V,M,49). A third described how social distraction had helped him become
“more mellow” and so counter stress that had caused his “legs to tighten” (M,M,55). And yet
another, how it had transformed his walking-style and helped remove spasms and pain
(RT,M,42).
These benefits of social distraction were also described by people with ‘unclear
adjustment’. One such participant said that attending “social meetings” brought pleasure and
made MS “easier”, and described transformation of a new social group member: “I’ve got her
back into gardening and she’s growing plants for me to sell. And this has given her
motivation and purpose. It has worked a miracle” (L,F,67). Although less evident in those
with ‘challenged adjustment’, one did indicate that “When I become socially distracted it
brings back the ‘old me!’” (BA,F,53).
Barriers to participation. At the same time as noting the benefits of social distraction,
there was also recognition of the barriers to participation. Notably, problems with tremor,
incontinence, emotionality, word finding and eyesight, and fatigue, all hindered participation.
One participant more able to adjust to MS explained, “You gear-up to go, and suddenly you
can’t” (D,M,49). Interestingly, a third of the participants with ‘good adjustment’ described
some sense of feeling “unreliable and untrustworthy” (BA,F,53). Due to reduced functioning
“in the afternoons” one participant with ‘good adjustment’ found he had to “cram things into
20
mornings” (V,M,49). Another illustrated this point: “At five o-clock, I prepare supper. We
won’t appreciate anyone turning-up because I’m knackered. The telephone is off at fivethirty. By nine we’re in bed” (E,F,52). ‘Trying to plan ahead’ as a means to increase
participation was nevertheless perceived as a barrier. In the case of another person with ‘good
adjustment’, trying to motivate her MS group and source new wheel-chair friendly
destinations was a struggle (C,F,56). Interestingly, participants from all adjustment categories
described how pre-arranging and relying on external transport had “taken spontaneity out of
life” and “freedom” (Q,F,61; J,F,48; G,F,59). Only those with ‘good adjustment’ focused on
physical barriers to social engagement. This was perhaps because 50% depended on mobility
aids, compared with 20% of those in ‘unclear’ and ‘challenged’ adjustment groups. Two in
particular felt “barred from getting out” because of a “lack of personal strength” and
inaccessible terrain, door thresholds, public toilets and modern vehicles (Q,F,61; E,F,52).
Unlike participants with ‘challenged adjustment’, those more able to adjust were
conscious of negative consequences on health and well-being as a result of being hindered in
taking part in social networks. Three indicated this increased depression, and the sense they
were living in a “totally different world” to the rest of society (Z,F,49; Q,F,61; D,M,49).
Another indicated it would drive her “crazy” C,F,56). Yet another noted that: “It would kill
me off …. everything would shut down physically and mentally. Confidence would go. I
would shut myself out from the world” (B,F,49).
In summary, the majority of participants described social participation as the vehicle
to distraction, which in and of itself, was seen to be associated with enhanced mental and
physical health. Though, there was simultaneous recognition of the common barriers to
participation that impacted negatively on adjustment. Those more able to adjust to MS were
distinguishable in describing more deeply the detrimental impact reduced social participation
and access to social distraction had on their health and adjustment. This again suggests they
21
value and extract positive social qualities more purposefully than those who experienced
adjustment difficulties.
Discussion
In this qualitative investigation we explored the role of social groups in adjustment to
MS, using the GHQ as a framework from which to interpret the experience of adjustment.
Three central themes emerged — loss and change in social roles and relationships, engaging
with or avoiding others, and social participation as distraction. Notably, those more able to
adjust described having more opportunities to maintain meaningful social roles and
relationships across disease progression and transition periods. Second, they expressed
greater acceptance of loss and change, employing more pragmatic approaches to manage
their impact. Finally, they appeared to have a stronger sense of connectedness with social
groups, and not just to individuals, with agency in harnessing those that were empathetic and
supportive of positive self-concept.
Despite the research focusing primarily on group relationships, it was clear that
interpersonal relationships played an important role in adjustment. Consistent with previous
research (e.g., Irvine et al., 2009; Larsen, 1990; Williamson, 2000), spousal relationships
were highlighted as key in the experience of adjustment, as was support from other family
members. However, the present research extended these findings in several ways. First, it
provided evidence of the importance of maintaining these valued relationships (in addition to
other valued roles, such as mother, artist), which was a stronger element in the reports of
those more able to adjust. Theoretically, this maintenance provides a basis for self-continuity
— or seeing oneself as the same person over time — which has been shown in previous
research to be vital in coping with life change (e.g., Jetten et al., 2012). From this,
participants may have derived a sense of coherence and continuity between their pre- and
post-diagnosis selves. Second, social group relationships appeared as influential in supporting
22
adjustment, but, again, especially so for those who presented with ‘good adjustment’. These
participants expressed a strong sense of connectedness with particular groups perceived as a
resource to be drawn upon for support. Important too, was evidence of agency in choosing
those groups that were particularly positive and protective of self-esteem. Support groups
were not always sought, but rather avoided if felt to contain people out of alignment with
participants’ goals of overcoming MS. This may have heightened the sense of control among
those more able to adjust, in the context of living with an uncontrollable condition. These
notions of maintenance and connectedness with social groups were clearly an important part
of their adjustment story, supporting greater acceptance of changes and losses in social
relationships experienced in response to MS.
Also striking for those more able to adjust, was their capacity to consider their role in
wider society, given the tendency for stigmatisation and exclusion of people with chronic
conditions. Notable, was their need to present a good image of themselves to feel more
accepted and included. Some participants explained and described symptoms as experiences
others in society might relate to, such as having one drink too many. Others withheld
explanations to some degree to protect dignity. Regardless of motivation, this sub-theme
highlighted a sense of resilience in order to better manage changes in experience of wider
society, as a consequence of MS.
The experience of social distraction of those more able to adjust is also a novel
finding. Here, participants described drawing upon social networks to enhance health,
adjustment and positive self-image, and to deter rumination about MS and its consequences.
In a sense, this served to expand self-concept beyond being solely defined by MS. Positive
experiences simultaneously highlighted barriers to participation to which all were particularly
aware. This perhaps indirectly points to the importance of access to multiple social networks
for different ends. Access to, and identification with, a support group is necessary to enhance
23
understanding of MS through others. Though, at other times, it is helpful to see oneself in a
different light (e.g., as a volunteer) to pursue other interests for personal growth and increase
access to other forms of support.
The above concepts featured less, or were absent from the experiences of those with
‘unclear’ or ‘challenged’ adjustment. These participants expressed a sense that MS had
destroyed self-continuity through the loss of roles and relationships. Similarly, there was
general absence of shared identification with groups, and so the potential of social support to
contribute to successful adjustment was compromised. This may provide a helpful social
component to the suggestion that those challenged in adjustment are perhaps focusing on
unresolvable problems (Mohr & Cox, 2009). Hankering after lost aspects of the pre-MS self,
for example, may indicate integration difficulties between pre- and post-diagnosis self. This
may also impact negatively on willingness to take-on new identities through joining new
groups, and so limit access to beneficial forms of social support that can be so vital to
adjustment.
Theoretically, these factors resonate well with the social processes highlighted in the
Social Identity Model of Identity Change (SIMIC). Maintenance appeared to play a critical
role in adjustment, as the model would predict. Those more able to adjust maintained
meaningful roles and relationships and through this were able to find some coherence
between their pre- and post-diagnosis lives. Multiple group membership was important to the
extent that it provided opportunities to be someone other than a person with MS, with access
to other forms of support as needed. Also contributing to adjustment was the capacity to take
-on new social identities, particularly in the context of joining support groups but also in
joining other non-MS groups. Clearly then, adjustment is not a process informed by one, but
multiple, social processes and SIMIC provides a useful model from which to understand
these.
24
In keeping with this model, it was also clear that identification with others was greatly
pronounced in those more able to adjust. This enhanced the effectiveness of social groups in
providing an important source of grounding, support and guidance, and countering the
negative consequences of life change imposed by MS. Indeed, among those who were more
able to adjust, there appeared to be a greater capacity to be more open to modifying their selfperspectives and health behaviours to better manage their condition. This mechanism extends
the previous MS adjustment literature in the areas of cognitive reframing and acceptance
(Mohr & Cox, 2001). Specifically, it adds an important social dimension to the more
individualistic problem-solving approach that has been proposed. Those who actively pursue
social engagement — in the course of seeking personal-growth, new opportunities, and
external validation — appear better equipped to rebuild meaning in the face of MS and
sustain positive psychological states (Pakenham & Cox, 2009).
An important strength of our study is that we provide the first qualitative
demonstration of a relationship between social group processes and adjustment outcomes
within a neuro-degenerative population. The richness of data reflects the strength and
robustness of our natural setting design in uncovering highly sensitive perspectives and
complex contextual components that facilitate or constrain adjustment, supporting the view
that qualitative investigation is critical to deepening our understanding of the impact of
dimensions of participation (see, for example, Yorkston et al., 2006). These findings also
resonate with previous quantitative investigations of the role that social identities play in
adjusting to neurological conditions such as stroke (Haslam et al., 2008), progressive disease
(Haslam et al., 2010; Knight et al., 2010), acquired brain injury (Jones et al., 2010; 2012), and
MS depression (Wakefield et al., 2013), and confirms the centrality of particular group
processes through which social identities achieve these outcomes. In so doing, the potential
25
of the SIMIC framework to provide a coherent explanation that can be translated into MS
management and rehabilitation, and perhaps broader neurological populations, is signalled.
There are, though, a number of limitations that affect the strength of the conclusions
that can be drawn. A limiting feature of our design was its reliance on a purposeful and crosssectional sample, raising the possibility that those more able to adjust were more likely to
take part in a study about adjustment, to join support groups, and avoid reporting negative
experience as an important adjustment strategy. The present experiences of adjustment also
need to be interpreted within the boundaries of the methods and time perspective taken.
Using the GHQ as a framework for adjustment limits our understanding of the experience of
participants in the context of the medical and health symptoms that this measure taps.
Furthermore, in focusing on recent complaints and symptoms, we limit experiences to more
recent perceptions of adjustment, and recognize that these may change over time.
Additionally, there were limitations in primarily relying on the MS Society in our recruitment
strategy, potentially raising questions about the representativeness of the present experiences
of all people with MS, given a large number do not seek such support.
Concluding Comments
Our qualitative exploration of the lived experience of MS unravelled some
complexities of social context and meaning, and highlighted specific social variables
potentially critical to adjusting to living with MS. Consistent with SIMIC, findings
highlighted the vital role that social groups play in supporting people in coming to terms with
MS and to live fulfilled lives. Central to this, was the importance of maintaining valued roles
and relationships, of forming new social identities through joining support and other groups,
but also having access to multiple social identities to avoid being defined solely by MS. In
the context of this population’s tendency to withdraw from society because of the challenging
nature of MS (Pakenham & Burnsall, 2006), an important implication of findings is that we
26
can facilitate adjustment by helping people with MS take on board and sustain critical group
memberships, rather than leaving individuals to the uncertainty of their own resources.
27
Footnote
1. This coding scheme, used throughout the Results section, captures the participant ID (from
Table 1), their gender (as female (F), or male (M)) and their age.
28
Acknowledgements
We are grateful to the MS Society and its members for enabling us to conduct this
research.
29
References
Baylor, C., Yorkston, K., Bamer, A., Britton, D., & Amtmann. D. (2010). Variables
Associated With Communicative Participation in People with Multiple Sclerosis: A
Regression Analysis. American Journal of Speech-Language Pathology, 19, 143–153.
Berkman, L.F. (1995). The role of social relations in health promotion. Psychomatic
Medicine, 57, 245–254.
Boden-Albala, B., Litwak, E., Elkind, M.S., Rundek, T., & Sacco, R.L. (2005). Social
isolation and outcomes post stroke. Neurology, 64, 1888–1862.
Boeije, H.R., Duijnstee, M.S.H., Grypdonck, M.H.F., & Pool, A. (2002). Encountering the
downward phase: Biographical work in people with multiple sclerosis living at home.
Social Science and Medicine, 55, 881-893.
Bogosian, A., Moss-Morris, R., Yardley, L., & Dennison, L. (2009). Experiences of partners
of people in the early stages of multiple sclerosis. Multiple Sclerosis, 15, 876–884.
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research
in Psychology, 3, 77–101.
Bringfelt, P.A., Hartelius, L., & Runmarker, B. (2006). Communication problems in multiple
sclerosis: 9-year follow-up. International Journal of MS Care, 8, 130–140.
Chiaravalloti, N.D., & DeLuca, J. (2003). Assessing the Behavioral Consequences of
Multiple Sclerosis. An Application of the Frontal Systems Behavior Scale (FrSBe).
Cognitive and Behavioral Neurology, 16, 54–67.
Cresswell, J.W. (2009). Research design: Qualitative, quantitative, and mixed methods
approaches. 3rd ed. Sage Publications Inc.
Dijkers, M., Whiteneck, G., & El-Jaroudi, R. (2000). Measures of social outcomes in
disability research. Archives of Physical Medicine & Rehabilitation, 81, S63–S80.
30
Dutta, R., & Trapp, B.D. (2007). Pathogenesis of axonal and neuronal damage in multiple
sclerosis. Neurology, 68, S43–54.
Folkman, S., & Lazarus, R.S. (1986). Stress processes and depressive symptomatology.
Journal of Abnormal Psychology, 95, 107–113.
Folkman, S., & Lazarus, R.S. (1988). Manual for the Ways of Coping Questionnaire.
Research edition. Palo Alto, CA: Consulting Psychologists Press.
Goldberg, D.P., & Williams, P. (1978). Manual of the General Health Questionnaire.
Windsor, England: NFER Publishing.
Haslam, C., Haslam, S.A., Jetten, J., Bevins, A., Ravenscroft, S., & Tonks, J. (2010). The
social treatment: The benefits of group interventions in residential care settings.
Psychology and Aging, 25, 157-167.
Haslam, C., Haslam, S.A., Knight, C., Gleibs, I., Ysseldyk, R., & McCloskey, L.G. (2014).
We can work it out: Group decision-making builds social identity and enhances the
cognitive performance of care home residents. British Journal of Psychology, 105, 17-34
Haslam, C., Holme, A., Haslam, S.A., Iyer, A., Jetten, J., & Williams, W.H. (2008).
Maintaining group memberships: S.I. continuity predicts well-being after stroke.
Neuropsychological Rehabilitation, 18, 671–691.
Haslam, S.A., Jetten, J., Postmes, T., & Haslam. C. (2009). Social identity, health and wellbeing: An emerging agenda for Applied Psychology. Applied Psychology: An
International Review, 58, 1–23.
Haslam, S.A., O’Brien, A., Jetten, J., Vordemal, K., & Penna, S. (2005). Taking the strain:
Social identity, social support and the experience of stress. British Journal of Social
Psychology, 44, 355–370.
31
Hemmer, B., Nessler, S., Zhou, D., Kieseier, B., & Hartung, H.P. (2006).
Immunopathogenesis and immunotherapy of multiple sclerosis. Nature Clinical Practice
Neurology, 2, 201–211.
Irvine, H., Davidson, C., Hoy, K., & Lowe-Strong, A. (2009) Psychosocial adjustment to
multiple sclerosis: Exploration of identity redefinition. Disability and Rehabilitation, 31,
599-606.
Jelinek, G.A., & Hassed, C.S. (2009). Managing multiple sclerosis in primary care: are we
forgetting something? Quality in Primary Care, 17, 55–61.
Jetten, J., Haslam, C., Haslam, S.A. (2012). The social cure: Identity, Health and Well-being
New York: Psychology Press.
Jetten, J., Haslam, C., Haslam, S.A, & Branscombe, N.R. (2009). The Social Cure. Scientific
American Mind, 20, 26-33.
Jetten, J., Haslam, S.A., Iyer, A., & Haslam, C. (2009). Turning to others in times of change:
Social identity and coping with stress. In S. Stürmer, and M. Snyder (Eds.). The
psychology of prosocial behavior: Group processes, intergroup relations, and helping (pp.
139-156). Oxford, UK: Blackwell.
Jetten, J., & Pachana, N.A. (2012). Not wanting to grow old. A Social Identity Model of
Identity Change (SIMIC) analysis of driving cessation among older adults. In J. Jetten, C.
Haslam, and S.A. Haslam (Eds.). The social cure: Identity, Health and Well-being (pp. 97113). New York: Psychology Press.
Jones, J.M., Haslam, S.A., Jetten, J., Williams, W.H., Morris, R., & Saroyan, S. (2010). That
which does not kill you can make you stronger (and more satisfied with life): The
contribution of personal and social changes to well-being after brain injury. Psychology
and Health, 3, 353-369.
32
Jones, J.M., Jetten, J., Haslam, S.A., & Williams, W.H. (2012). Deciding to disclose: The
importance of disclosure for well-being after acquired brain injury. In J. Jetten, C.
Haslam, and S.A. Haslam (Eds.). The social cure: Identity, Health and Well-being (pp.
255-271). New York: Psychology Press.
Knight, C., Haslam, S.A., Haslam, C. (2010). In home or at home? Evidence that collective
decision making enhances older adults’ social identification, well-being and use of
communal space when moving into a new care facility. Aging and Society, 30, 1393–1418.
Larsen, P.D. Psychosocial adjustment in multiple sclerosis. Rehabilitation Nursing, 15, 242247.
Lubin, F.D., & Reingold, S.C. (1996). Defining the clinical course of multiple sclerosis:
Results of an international study. Neurology, 46, 907-911.
McCabe, M.P., & Di Battista, J. (2009). Role of health, relationships, work and coping on
adjustment among people with multiple sclerosis: A longitudinal investigation.
Psychology, Health & Medicine, 9, 431–439.
McCabe, M.P., McKern, S., & McDonald, E. (2004). Coping and psychological adjustment
among people with multiple sclerosis. Journal of Psychosomatic Research, 56, 355–361.
McCabe, M.P., Stokes, M., & McDonald, E. (2009). Changes in quality of life and coping
among people with multiple sclerosis over a 2 year period. Psychology, Health &
Medicine, 14, 86–96.
Mohr, D.C., & Cox, D. (2001). Multiple Sclerosis: Empirical Literature for the Clinical
Health Psychologist. Journal of Clinical Psychology, 57, 479–499.
Mohr, D.C., Goodkin, D.E., Nelson, S., Darcy, C., & Weiner, M. (2002). Moderating effects
of coping on the relationship between stress and the development of new brain lesions in
multiple sclerosis. Psychosomatic Medicine, 64, 803–809.
33
MS Trust (2013). Information, education, research and support. Available from:
http://www.mstrust.org.uk/information/aboutms/keyfacts.jsp and
http://www.mstrust.org.uk/atoz/prevalence_incidence.jsp
Ownsworth, T. (2014). Self-identity after brain injury. Hove, UK: Psychology Press
Ownsworth, T., & Haslam, C. (in press). Impact of rehabilitation on self-concept following
traumatic brain injury: A review of intervention methodology and efficacy.
Neuropsychological Rehabilitation.
Pakenham, K.I. (1999). Adjustment to multiple sclerosis: Application of a stress and coping
model. Health Psychology, 18, 383-392.
Pakenham, K.I., & Burnsall, S. (2006). Relations between social support, appraisal and
coping and both positive and negative outcomes for children of a parent with multiple
sclerosis and comparisons with children of healthy parents. Clinical Rehabilitation, 20,
709–723.
Pakenham, K.I., & Cox, S. (2009). The dimensional structure of benefit finding in multiple
sclerosis and relations with positive and negative adjustment: A longitudinal study.
Psychology & Health, 24, 373–393.
Sullivan, C.L., Wilken, J.A., Rabin, B.M., Demorest, M., & Bever, C. (2004). Psychosocial
Adjustment to Multiple Sclerosis. International Journal of MS Care, 6, 98–105.
Tajfel, H., & Turner, J.C. (1979). An integrative theory of intergroup conflict. In: WG Austin
and S Worchel (Eds.). The social psychology of intergroup relations (pp. 33-47).
Monterey, CA: Brooks/Cole.
Thomas, P.W., Thomas, S., Hillier, C., Galvin, K., & Baker, R. (2006). Psychological
interventions for multiple sclerosis. Cochrane Database Systematic Review, Jan 25, 1,
CD004431.
34
Turner, J.C. (1985). Social categorization and the self-concept: A social cognitive theory of
group behaviour. In E.J Lawler (Ed.). Advances in group processes (pp 77-122).
Greenwich, CT: JAI Press.
Turner, J.C, Hogg, M.A., Oakes, P.J., Reicher, S.D., & Wetherell, M.S. (1987).
Rediscovering the social group: A self-categorization theory. Cambridge, MA, US: Basil
Blackwell.
Yorkston, K.M., Baylor, C.R., Klasner, E.R., Deitz, J., Dudgeon, B.J., Eadie, T.L., &
Amtmann, D. (2006). Satisfaction with communicative participation as defined by adults
with multiple sclerosis: A qualitative study. Journal of Communication Disorders, 40,
433–451.
Wakefield, R.H., Bickley, S., & Sani, F. (2013). The effects of identification with a social
group on the mental health of people with multiple sclerosis. Journal of Psychosomatic
Research, 74, 420-426.
Williamson, K. (2000). Review of the psychosocial aspects of multiple sclerosis. British
Journal of Community Nursing, 5, 132-138.
35
Table 1. Participant characteristics
ID
L
Age
67
Gender
F
Years
with MS
MS category
27
Unknown
Current occupation
Volunteer,
Marital status
Living
circumstances
Medication for
for ..
GHQ data
organization
Widowed
Alone
Spasticity
Unclear adjustment
MS Society
R
67
F
40
Unknown
None
Separated
Alone
n/a
Good adjustment
RT
42
M
1
PrimaryProgressive
None
Married
Partner
n/a
Good adjustment
B
49
F
13
Unknown
Volunteer,
MS Society
Married
Partner
Pain
Good adjustment
G
59
F
7
Unknown
None
Separated
Alone
Pain
Challenged adjustment
E
52
F
29
‘Progressive’
None
Married
Partner
Incontinence
Good adjustment
C
56
F
11
RelapsingRemitting
Volunteer,
MS Society
Married
Partner
Pain
Good adjustment
V
49
M
9
‘Progressive’
None
Married
Partner
Tremor
Good adjustment
M
55
M
16
‘Progressive’
Volunteer,
MS Society
& private part-time
Divorced
Alone
Fatigue
Good adjustment
Disease-modification
Spasticity
J
48
F
3
RelapsingRemitting
None
Partnered
Partner
Disease-modification
Unclear adjustment
D
49
M
22
RelapsingRemitting
None
Separated
Sister
n/a
Good adjustment
Z
49
F
6
RelapsingRemitting
None
Married
Partner
Disease-modification
Good adjustment
Sleep, Pain
36
IH
51
F
16
SecondaryProgressive
None
Divorced
Sister
BA
53
F
4
RelapsingRemitting
Volunteer,
Married
Partner
SecondaryProgressive
None
Married
Partner
Q
61
F
17
MS Society
Spasticity, Tremor
Incontinence
Depression
Insomnia, Pain
Pain
Disease-modification
Challenged adjustment
Spasticity
Good adjustment
Challenged adjustment
37
Table 2. Topic schedule and prompts
Topic: Exploring social group relationships
Question: Thinking about social relationships (with family, friends hobby, religious, work, and
support group contexts) who are the people important to you and why?
Prompts
a) their types and nature
b) their roles and influences
c) any beneficial effects
d) any changes in relationships over time
e) any impact of these changes
Topic: Exploring the influence of MS on social relationships
Question: Do you think MS has influenced your social relationships?
Prompts
a) barriers and facilitators of social relationships
b) losses and gains
c) opportunities to maintain old relationships and build new ones
d) any changes in relationships over time
e) any impact of these changes
Question: Thinking about other people you know with MS and the social aspects of their lives, do
you think they might have similar or different experiences and feelings?
Topic: Exploring perceptions of the impact of MS on others social relationships
Question: Thinking about other people you know with MS and the social aspects of their lives, do
you think they might have similar or different experiences and feelings?
Prompts
a) resilience
Topic: Exploring the impact that social groups have on perceptions of MS
Question: Looking again at your social relationships, do you think they have affected your MS?
Prompts
a) health
b) well-being
c) adjustment
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Table 3. Central themes and associated concepts in participant experience of adjustment to MS.
Themes
Associated concepts
1. Loss and change in social roles and
relationships
Losing parts of yourself
Changing family relationships
Career changes
Changes in friendships
Changing relationship with society
2. Engaging with, or avoiding, others
Group engagement
Group avoidance
3. Social participation as distraction
Benefits of active participation
Barriers to participation
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