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Self-help groups bring people together who share common life experiences for support, education and mutual aid. Benefits of participating in a self-help group include:. National MS Society self-help groups focus on support, advocacy, education, wellness or may be more social in nature.


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Elizabeth M. Wallack, Hailey D. The aim of this study was to determine what factors most greatly contributed to healthy aging with multiple sclerosis MS from the perspective of a large sample of older people with MS. De and Methods.

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Two independent raters used the framework method of analyzing qualitative data. Participants averaged 64 years of age with MS symptoms for The majority of participants lived in their own home with a spouse or partner. Participants described seven themes: social connections, attitude and outlook on life, lifestyle choices and habits, health care system, spirituality and religion, independence, and finances.

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These themes had two shared characteristics, multidimensionality and interdependence. Learning from the experiences of older adults with MS can help young and middle aged people with MS plan to age in their meet homes aged communities. Our data suggests that women people with MS prioritize factors that are modifiable through targeted self-management strategies.

Multiple sclerosis MS is an autoimmune disease characterized by demyelinating lesions and atrophy of the central nervous system [ 1 ]. Varying severity and progression of a wide range of sensorimotor and cognitive symptoms make it highly heterogeneous [ 1 ]. MS is most often diagnosed between the ages of 18 and 40 years and affects women more than men [ 2 ]. According to the World Health Organization, there are 2. Canada has the highest prevalence of MS with per[ 3 ]. The of people with MS who are older adults is increasing, likely due to improved longevity and more effective treatments [ 4 ].

Recent evidence also suggests that the disease course may be modifiable by engaging in healthy lifestyle behaviors such as exercise, eating fish, abstaining from smoking, and moderate alcohol consumption [ 56 ]. Furthermore, the presence of cardiovascular comorbid conditions, which are behaviorally driven, is associated with hastened disease progression [ 7 ]. Healthy aging with MS is a relatively new concept [ 89 ] and whether healthy aging with MS differs from generic models of healthy aging is not known.

They found that older people with MS reported having less freedom and needed more assistance than their friends and family who did not have MS [ 1011 ]. Later, along with and Dilorenzo et al. This fits with the Selective Optimization with Compensation SOC model of healthy aging, which focuses on strengths rather than deficits, suggesting that older people select and optimize their best abilities and most intact functions while compensating for declines and losses [ 13 ].

There is further evidence to suggest that the SOC model is relevant to those who age with a chronic illness. Kralik [ 14 ] suggested that people with a chronic illness can learn to live with their condition, integrating it into their daily lives. Individuals can Collins extensive knowledge about their illness and, in the process, develop skills in self-management [ 915 ]. Young et al. A new multitiered model of healthy aging with MS was proposed by Ploughman and colleagues in [ 8 Collins. Work, social engagement, effective and accessible health care, healthy lifestyle habits, and maintaining independence at home were found to be critical proximal factors of healthy aging [ 8 ].

Financial flexibility, social support, cognitive and mental health, and resilience provided supporting foundational factors [ 8 ]. Thus far, the studies in this field have sampled small groups of participants [ 2810 — 12 ]. Whether models of healthy aging proposed by research fit with a large diverse sample of older people with MS is not known. The aim of this study was to determine, for the first time, what factors most aged contributed to healthy aging with MS from the perspective of a large sample of older people living with MS. After receiving ethical approval from the Health Research Ethics Authority, we accessed secondary data from a dataset of older adults with MS.

Following pretesting of survey questions relating to health, lifestyle, and women with MS [ 8 ], the original survey information was obtained by mail or telephone and was entirely self-reported. To compare ageparticipants were divided into three groups, 55—64 young65—74 middleand 75 and over meet old.

Healthy aging from the perspectives of older people with multiple sclerosis

We also extracted variables from the original dataset to help characterize the age groups. Scores for the scale emotional distress ranged from 0 to 42, with higher scores indicating more distress [ 17 ]. Level of disability was measured using the Barthel Index where a score of indicates total independence and a score of 0 indicates total dependence [ 18 ]. Two independent raters EW and HW used the framework method of analyzing qualitative data described by Gale et al.

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Because this was secondary analysis, stage 1, transcription, was not necessary. The transcription process used by Ploughman et al. In the next stage, familiarization required both raters to read and reread responses from participants recording initial thoughts and impressions.

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During stage 3 the researchers coded the first responses by reading each line of text independently and created that described what was important about each passage. Stage 4 involved developing a working analytical framework and coders met to compare the labels that were applied to the .

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Some codes were grouped together and some coding names were changed to reflect a shared perspective on the category. This step also provided opportunities to discuss disagreements between coders and negotiate resolutions. Coders rearranged ly coded responses to match newly developed shared coding names and some comments were placed into multiple by one or both raters to better reflect the complexities of responses. This formed the working analytical framework that was used to code the next responses.

Coders alternated between stage 3 and stage 4 every responses, modifying the emerging framework at each step until no further modifications were required. Each coder kept a journal of changes that were made. The majority of disagreement occurred within the first responses.

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The 5th stage required the coders to independently index all remaining responses using the existing and codes. Stage 6 involved summarizing the data into the framework matrix. One coder created sub in NVivo and identified quotations that illustrated the concepts. In the final stage the researchers compared the newly built framework to those described by others [ 81320 ].

Pseudonyms were used when citing quotations from participants. Negative ICC estimates indicate systematic disagreement. Of surveys, were returned [ 2 ]. The majority of participants lived in their own home with a spouse or partner and required some assistance for activities of daily living Barthel Index, Table 1.

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There were no ificant differences between the age groups with respect to mental health status, financial situation, level of disability, type of home, or living situation. As expected there was a ificant effect of age on years since onset of MS symptoms [] Table 1. The length of responses ranged from one word to 1, words. In total there were 1, coded items which represented responses from participants. Participants described seven overarching themes that contributed to healthy aging with MS from their points of view. These included beginning with the theme with highest frequency social connections, attitude and outlook on life, lifestyle choices and habits, health care system, spirituality and religion, independence, and finances Figure 1.

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These seven themes had two shared characteristics, multidimensionality and interdependence. Activities outside the home that provided opportunities for social engagement were also highly valued and included support groups, volunteer work, and community organizations. Older people with MS were also contributing to their social networks.

These interactions were often reciprocal in nature. One participant explained the following. My volunteer work with my dog and the hospital patient advocacy has kept me stimulated. Social connections were sometimes but not always structured in a support provider-care recipient dynamic, in which social networks provided emotional and instrumental support for older people with MS. These networks provided encouragement, opportunities for activity both mental and physicaland help with activities of daily living.

This is illustrated by the following example. People close to me who accept my MS and give me all the encouragement and support that I need, plus allow me to do the activities that I wish to do and at my level and speed. Isabel, 66, Nova Scotia. Social connections also provided older people with MS a sense of purpose and helped to motivate them to be well. One person explained the following.

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I wanted to see my kids go to university and get married and have children of their own. Marie, 62, Nova Scotia. Attitude and outlook was the second most commonly identified factor important to healthy aging with MS. Older people with MS reported adopting ways of thinking that helped them to cope with the challenges of living with MS. Among the 11 subthemes identified within this theme Figure 2the role of positive thinking was most commonly reported.

Older people with MS described adopting a positive attitude and being optimistic. Second to positivity was determination and perseverance, two terms that were used interchangeably by participants.

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One example of this is as follows:. Being determined has helped — I should have stopped work teacher grade five years before I did, perseverance.

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Michael, 64, Ontario. Participants also placed importance on acceptance and described understanding how to work within their limitations and to focus on their abilities. Humor, being able to laugh, and looking for humor in difficult situations were also described as being important to older people with MS within this theme.