OJTROpen Journal of Therapy and Rehabilitation2332-1822Scientific Research Publishing10.4236/ojtr.2016.41003OJTR-63793ArticlesMedicine&Healthcare The Psychological Processes of Adaptation and Hope in Patients with Multiple Sclerosis: A Thematic Synthesis ndySoundy1*CarolynRoskell1TraceyElder1JohnnyCollett2HelenDawes2Department of Sport and Health Sciences, Faculty of Health and Life Sciences at Oxford Brookes University, Oxford, UKDepartment of Physiotherapy, School of Sport, Exercise and Rehabilitation Sciences, University of Birmingham, Edgbaston, Birmingham, UK* E-mail:A.A.Soundy@bham.ac.uk(NS);150220160401224711 January 2016accepted 22 February 25 February 2016© Copyright 2014 by authors and Scientific Research Publishing Inc. 2014This work is licensed under the Creative Commons Attribution International License (CC BY). http://creativecommons.org/licenses/by/4.0/

Purpose: The purpose of the current research was to review the lived experiences of patients with multiple sclerosis (MS) in order to extrapolate the psychological process of adaptation. Methods: A thematic synthesis was undertaken within 3 phases: systematic search for literature, critical appraisal of included studies and synthesis of research. Results: A total of 47 studies were included in this review, this included 1146 (812 females, 265 males, and 69 unknown) unique patients with MS (aggregated mean age: 49.3 years [30/47 studies], aggregated time with illness: 12.3 years [28/47 studies]). The critical appraisal of research illustrated that the design of the studies and the reference to reflexivity in studies were not well considered. The synthesis was able to identify a primary response of psychological adaptation as well as distinct coping strategies. A model of emotion, hope, and adjustment was identified. Conclusion: Simple processes of adaptation for people with MS can be considered by clinicians and utilised to promote mental well-being in patients. Clinicians and researchers also need to be aware of the important psychological needs of patients during interactions. Discussion and clinical implications are provided.

Qualitative Meta-Synthesis Adaptation Hope Neurology Multiple Sclerosis1. Introduction

Multiple sclerosis (MS) is a disease affecting the brain and spinal cord which is typically defined within different descriptors that identify the state and course of the illness [1] . It is characterised by an unpredictable course, but often leads to substantial disability [2] . Approximately 2.1 million people in the world are affected [3] , within the United Kingdom this represents around 0.3% of the population. MS has a higher incidence in women than men, with a peak onset between the ages of 40 - 50 years [4] . MS is reported to have a considerable impact on an individual’s quality of life, ability to continue life roles, the ability to work and/or undertake leisure activities [3] . MS is costly for society and the patients, their carers and families. For instance, in the UK, half yearly costs for patients with MS have been estimated as £8397 [5] , these figures are similar to other westernised countries, for instance annual costs in the US are $30,601 per patient [2] .

Patients with MS experience periods of anxiety, fear and uncertainty, which can lead to hopelessness, depression and feelings of abandonment [6] . Perceptions of stress, fear, and uncertainty exert a negative impact on a patient’s meaningful activities (work, social activities) and interactions [7] . This, in turn, is likely to have a significant impact on the patient’s quality of life. For instance, the perceived ability to cope [8] and experience of depression [6] are negatively associated with quality of life for patients with MS. This evidence suggests that emotions are likely associated with adjustment, hope and the ability to cope. Thus, there is evidence that MS has a severe and negative impact on a patient’s quality of life and mental well-being1. Indeed, in patients with MS, psychological constructs are considered a better predictor of adjustment than illness related factors, for instance remission status or the severity of symptoms [6] .

Despite the negative impact of the illness, it is possible for patients to positively influence their mental well- being. For instance, patient’s perceptions of control over their life or, those patients who are able to positively reappraise their own situation can experience better adjustment [9] . Evidence to support such conclusions is generated from quantitative studies that utilise specific inventories [10] . Such quantitative studies are valuable in identifying the strength and direction of relationship between psychological concepts but less able to consider the processes involved, the different ways that the concepts may be defined, or have the ability to be theory generating through the process of synthesis.

Recent evidence from other chronic and palliative conditions has demonstrated how concepts such as coping, adaptation and hope can be understood through reviewing qualitative studies based on patient’s experience of illness [11] . Indeed a recent psychological model developed from a qualitative synthesis of research has been able to identify a process of psychological adaptation and hope enablement for patients with motor neurone disease [12] . The model reflects a well-established framework of adaptation [13] that considers two broad outcomes including a coping or succumbing response to the illness experience. Expressions relating to the expression of hope and adaptation lie at the centre of the model. However, they are not well considered. For instance, the spectrum of responses relating to adaptation e.g., those found in classic stage and phase models of adjustment [14] are missing, as is the spectrum of expressions relating to hope [11] . Further, the model does not consider the coping processes identified within existing literature on coping, for instance from a taxonomy of coping strategies [15] [16] . Neither does the model consider many of the psychological processes involved in self-management [17] , or, alternatively the importance of the person as an active agent in the illness as a part of the self-regulatory literature [18] . The proposed model has other weaknesses, for instance, the common sense model of illness has identified the dual cognitive and emotional processes that occur simultaneously as a response to the threat of illness [19] [20] . Further to this, evidence has identified a strong affinity between emotional regulation and coping [16] . Indeed, emotions are considered an important part of self-management processes [17] as well as a factor that influences a patient’s coping response [21] [22] . Thus, although difficult to establish [23] , being able to establish the psychological processes of adaptation and the expression of hope is valuable for research for patients with MS.

To the best of the author’s knowledge only one qualitative review [24] has been conducted considering the experiences of patients with MS. This narrative review only included 15 articles and primarily considers interaction with health care professionals rather than processes of adaptation. Past the need for a qualitative review, there is also need for further understanding around the expression of hope identified within a recent model of hope enablement [12] , in particular how the processes of psychological adaptation (including adjustment and coping related responses) integrate with this expression. Further to this, it is possible that this understanding could be applied more generally and consideration for concepts identified above, could identify and contribute to a theory on this topic.

Given the above rationale, the purpose of this review is to illustrate the processes of psychological adaptation following events that relate to MS (MSRE; multiple sclerosis related event); which include symptoms of MS which impact on the individual’s mental well-being both pre and post diagnosis). This will be undertaken by considering three major points: 1) that psychological adaptation occurs before a coping or succumbing response to illness, but includes aspects of an emotional response, acceptance and is contained and relates to the expression of hope as identified in a recent model for individuals with motor neurone disease [12] ; 2) that the idea of psychological adaptation is related to the ability to accept, reject or defy what has happened which is important for patients with MS [25] and 3) the dichotomy of hope from hope to no hope [11] can be expressed by patients about how they their expectations, wants or desires in the future, with hope in possibility as a central factor that is needed as part of this expression [26] .

2. Methods

A position as a “subtle realist” [12] was selected for the purpose of this review. With this in mind, the review is focused on the generalizable experiences detailed in the included studies with an aim of developing a theory or model which may have a broad application to all individuals with MS, as well as other patients who suffer with chronic and palliative conditions. A thematic synthesis [27] was undertaken in three stages: 1) search strategy; 2) appraisal of literature; 3) synthesis technique.

2.1. Electronic Search

The primary author undertook an electronic search of the following databases was undertaken, from inception until January 2015; PubMed, Medline, CINHAL, and PsychInfo. The key words used in the database included; Experience OR Hope OR Adjustment OR Coping OR expectation AND qualitative OR mixed methods AND Multiple Sclerosis. Secondary search methods included; Electronic searches of Google Scholar and Sciencedirect were undertaken for the first 500 hits generated. Citation chasing of included articles was conducted. Finally, the author’s personal library of literature was accessed to aid the identification and search process.

2.2. Eligibility Criteria

The primary author determined by two authors (AS, TE) and moderated by a third (CR). An article was included when it satisfied the following eligibility criteria, considered within the domains of the “SPIDER” tool [28] :

S―Sample

The focus of the sample is on individuals diagnosed with MS.

PI―Phenomenon of Interest

Articles were selected if they considered the patient’s experience and expressions associated with hope, coping or adjustment. Verbatim experiences and expressions were required to be reported within articles. Further to this experience and perceptions from others (health care professionals, carers, family or friends) which focused on the patient experience were included. Articles were included where there was at least one paragraph within the result section of the article that fitted these criteria.

D―Design

Any type of qualitative design was considered including phenomenology, grounded theory, or ethnography. Mixed methods studies and case studies were included where a clear qualitative section could be utilised for the purposes of a synthesis. Articles were excluded if they were reflective pieces, quantitative research, reviews, books, theses, or conference proceedings. Internet sources were excluded if they were not presented in a traditional article form with a methods section that could be critically evaluated.

E―Evaluation

Articles were required to use the following type of evaluation method: field notes, diaries of any kind, interviews or focus groups. Articles were also required that could document experiences, views, or attitudes from users. Only articles published in English were included.

R―Result Type

To be included, articles had to contain qualitative results including observations, as well as interviews that illustrate verbal and nonverbal interactions.

2.3. Data Extraction

A pre-determined form was used to extract demographic details from included studies by the primary author. This form identified the following; sample size, gender, age, diagnosis, geographical location, setting of data collection, sampling method undertaken, analysis type, aim of study, and information on the interview schedule, duration of interviews and the type of analysis used by the study.

2.4. Critical Appraisal

An initial screening tool assessing the quality of the studies was used [29] . Following this, a modified 13 item critical appraisal tool developed from the 32 item Consolidated Criteria for Report Qualitative Research form (COREQ) [30] was used to assess the methodological quality of included articles. The reduced item version was used as the other 19 items identified within the COREQ, don’t appear to be sensitive to identifying methodological weaknesses from studies [12] [31] - [33] . The traditional three domains were retained and included: domain 1, research team and reflexivity (5 items); domain 2, study design (5 items); domain 3, study analysis (3 items). See Supplementary file A for full item breakdown.

2.5. Data Analysis and Qualitative Meta-Synthesis

A framework analysis [34] [35] was undertaken and developed from previous research based on a recent model on illness adaptation [12] as well as previous understanding from literature which considered the expression of hope and adaptation in neurological research [11] [25] [26] [32] [36] [37] . The framework had 5 themes including; 1) individual losses and the levels of hope, 2) adaptive responses, 3) expression of emotion and agency, 4) cognitive responses which (re)enable or disable hope, autonomy and perceived control. The framework was tested against the first 20 articles, which allowed the framework items to be reorganised (changing, adding and adapting themes, sub-themes, codes and units) on 4 occasions. This was followed by a reduction phase, which looked to define each unit and consider how it was associated with other cognitive and emotional expressions and identify how many studies supported each code (vote counting) [38] . The reduced and simplified framework split cognitive responses which reflective psychological adaptation and hope from coping related responses. Thus, other than acceptance and denial related spectrum of responses, coping was defined by previously identified groups of coping strategies/labels [15] [16] . The most frequent association between codes were identified and presented in the results including: a) a spectrum of hope related responses (from no hope to concrete hope) [11] ; b) a spectrum of adjustment related response (an inability to accept to positive embracement); and c) events of emotional expression, with consideration to the circumplex model of affect [39] because affect is considered the heart of emotional states [40] and clearly linked to the emotions described within the initial analysis.

The review used previous knowledge from different models and theories from inception of the review through to completion of analysis. This was undertaken to utilise the highest application of theory [41] . The purpose of this is to identify a generalizable model and process in line with the methodological orientation taken for the review, but not to claim it as “the truth” [42] , rather an identification of a process that could exist and that is able to challenge and further current models and views of psychological adaptation. An audit trail of the synthesis can be obtained from the primary author.

3. Results3.1. Demographics

A total of 841 hits were identified from the search processes with a total of 47 articles [25] [43] - [87] meeting the eligibility criteria. A total of 1146 (812 females, 265 males, and 69 unknown) unique patients were included in this review. The diagnosis and type of MS for each individual included 59 patients with primary progressive, 148 with secondary progressive, 149 with relapsing remitting, 2 with Benign and 801 unknown. The aggregated mean age (across 30/47 studies) was 49.3 years. The aggregated mean time of living with the illness post diagnosis (across 28 studies/47 studies) was 12.3 years. Studies were most frequently conducted in the UK (n = 12), USA (n = 11), Sweden (n = 8), Canada (n = 6), and Australia (n = 4). The primary setting of data collection was the patient’s home (n = 22), a MS charity community location (n = 5) or a hospital/rehabilitation clinic (n = 6). The PRISMA diagram can be seen in Figure 1 and summary Table 1 provides details of the included studies.

3.2. Critical Appraisal

All studies were identified as being appropriate to include in the review. Average scores across all studies revealed that the weakest reporting occurred within domain 2 the study design domain (average score 1.3/5). Within this domain details about non-participation of participants, the use of a pilot interview or construction of interview guides, the use of field notes, as well as consideration of data saturation were often not reported or considered. The average score for domain 1 was 1.4/5, within this domain the interviewer characteristics and consideration to bias and assumptions of the interviewer, as well as participants knowledge of the interviewer very rarely considered. Finally, the highest scoring domain was domain 3 scoring 1.4/3. However, consideration to the structure of the analysis using an audit trail or coding tree were most often not considered by the included studies. See Supplementary file A for complete summary scores.

A PRISMA diagram for the study The study characteristics of included studies
StudyQualitative method (methodology given if identified)ParticipantsSampling and settingData collection, study aims and analysis
1) Ahlström (2007)Semi-structured interviews15 (?♂) patients with MS Sub-types No type break down Mean age: 51 years Age range: 29 - 60 years Mean time with illness: not given Mean time until diagnosis: not givenSampling: purposive Eligibility: a) severe disease or injury; b) aged between 18-64; c) had received personal assistance in their daily lives; d) marked intellectual functional impairment and aphasia were excluded Setting: Two interviews in the patients home Study geographical location: SwedenData collection tool: semi-structured interview guide. Interview 1 considered falling ill, problems in daily living and family situation. Interview 2 repeated this and also included integrity, autonomy, participation in the events of daily living. Study Aim: “The aim of the study is twofold: i) to describe the losses of persons severely afflicted with chronic illness and who therefore, may experience chronic sorrow; and ii) to identify meaningful underlying patterns related to these losses in the form of chronic sorrow through an abductive approach to analysis.” (page 77) Average interview time: not given Interview time range: not given Analysis: abductive approach (both inductive and deductive)
2) Barker-Collo et al. (2006)Semi-structured interviews16 (5♂) patients with MS Sub-types 8 PP 8 RR Mean age: 56 years Age range: 27 - 72 years Mean time with illness: 6 years Mean time until diagnosis: not givenSampling: purposive Eligibility: a) received diagnosis of Ms either <5 years ago or >15 years ago, b) Setting: Participants homes Study geographical location: New ZealandData collection tool: Questions identified: 1) events leading to diagnosis and what happened following the events 2) what impact multiple sclerosis had on their lives Study Aim: “explore participants’ pre-diagnosistic and diagnosis experiences as well as the implications of living with the disease” (page 436) Average interview time: not given Interview time range: 1 - 2 hours Analysis: Thematic analysis
3) Boeije (2002)Case study1 (1♂) patients with MS Sub-type Not given Mean age: not given Age range: not given Mean time with illness: not given Mean time until diagnosis: not givenSampling: purposive Eligibility: (a) diagnosis with MS Setting: not given Study geographical location: HollandData collection tool: Consider the experience of multiple sclerosis Study Aim: Consider the experience of multiple sclerosis Average interview time: Interview time range: Analysis: Constant comparison approach
4) Boland et al. (2012)IPA7 (3♂) patients with MS Sub-types: 3 PP 3 RR 1 SP Mean age: not given. Median: 53 years Age range: 35 - 70 years Mean time with illness: not given. Median = 10 years Mean time until diagnosis: not given.Sampling: purposive Eligibility: a) diagnosed with MS for >2 years, b) speak English, c) have a significant other who would participate in interviews, d) previously worked with the primary author, e) were experiencing emotional or social crisis. Setting: not clear. Study geographical location: New ZealandData collection tool: semi-structured interview guide. Questions considered the patients coping approach, whether these had changed over time, o = and how coping may change in the future. Study Aim: “to gain a more in-depth understanding of how couples cope as a dyad when one of them has MS” (page 1368) Average interview time: not given Interview time range: not given Analysis: IPA
5) Boys and Mac Millian (2005)Phenomenological approach12 (5♂) patients with MS Sub-types: Not given Mean age: not given Age range: 8 - 18 years Mean time with illness: not given. Mean time until diagnosis: not givenSampling: purposive Eligibility: (a) children aged between 1 and 18 years diagnosed with MS Setting: not given Study geographical location: CanadaData collection tool: semi-structured interview guide. Guide focused on the patients’ thoughts and feelings about MS, what effect MS has had on their lifestyle, future relationships and stress and their ability to cope and advice they would give to others. Study Aim: Consider the experiences of children and adolescents who have MS Average interview time: not given Interview time range: not given Analysis: narrative analysis
6) Courts et al. (2004)Focus group design13 (3♂) patients with MS Sub-types not given Mean age: 46.9 years 47.3 years for women. 45.7 years for men. Age range: 1.5 - 15 years for women. 28 - 59 years for men. Mean time with illness: 5.8 years 5.6 years for women, 6.9 years for men. Mean time until diagnosis: not givenSampling: purposive Eligibility: a) had a diagnosis of MS, b) attended the MS society community location. Setting: MS society community location Study geographical location: United states of AmericaData collection tool: Focus groups. A period of uninterrupted time was given to each participation about their experiences of having MS. This was combined with comments from others which followed. Study Aim: “investigate the concerns and problems or lived experience of a group of men and a group of women with MS” (page 43) Average interview time: not given. Interview time range: 1.5 - 2 hours Analysis: not clear
7) Dennison et al. (2010)Telephone interview30 (8♂) patients with MS Sub-types 18 RR 4 PP 8 SP Mean age: not given. Age range: not given. “36.7% in 40’s, 33.3% in 50’s” Mean time with illness: 3.8 years. Mean time until diagnosis: not givenSampling: purposive Eligibility: a) diagnosis of MS for >8 years, b) could be recruited from MS society website and NHS MS services. Setting: Telephone interviews Study geographical location: United KingdomData collection tool: Telephone interview considering a series of open ended questions. Considered: (a) thoughts and feelings when first diagnosed and at present Study Aim: “in depth investigation into the process of adjusting to early stage MS.” (page 480) Average interview time: 45 minutes Interview time range: not given. Analysis: inductive thematic analysis
8) Dilorenzo et al. (2008)Telephone interview13 (4♂) patients with MS Sub-types Not given Mean age: 68.3 years Age range: 62 - 75 years Mean time with illness: 22.5 years. 8 - 42 years Mean time until diagnosis:Sampling: purposive Eligibility: a) 60 years and older, b) English speaking, c) diagnosed for >5 years Setting: Telephone interviews Study geographical location: United states of AmericaData collection tool: Open questions to the consider the experience and impact of living with MS and the factors which relate to adaptation. Study Aim: “identify psychosocial and/or physical characteristics reported to be related to adaptation in older individuals with MS Average interview time: not given. Interview time range: 60 - 90 minutes Analysis: software with thematic approach
9) Dyck and Jongbloed (2000)Semi-structured interviews54 (0♂) patients with MS Sub-types Not given Mean age: not given Age range: 25 - 49 years Mean time with illness: not given Mean time until diagnosis: not given.Sampling: purposive Eligibility: a) individuals with MS, b) attendance of the MS society locally. Setting: Patients home Study geographical location: CanadaData collection tool: semi-structured interviews. Considered; a) work experiences, b) illness management strategies, c) income issues, d) housing and personal relationships. Study Aim: “take account of both the individual and societal dimensions of employment, by investigating the everyday work experiences of women diagnosed with MS and the contextual framing of such experience” (page 339) Average interview time: not given. Interview time range: 1 - 2 hours Analysis: Constant comparison methods
10) Edmonds et al. (2007)Semi-structured interviews32 (13♂) patients with MS Sub-types: SP 21 PP 6 RR 3 Other 2 Mean age: not given. Median: 55 years Age range: 18 - 79 years Mean time with illness: not given. Median 14.5 years Mean time until diagnosis: not given.Sampling: purposive Eligibility: (a) individuals with Ms Setting: Patients home and rehabilitation unit where they attended for treatment Study geographical location: United KingdomData collection tool: Open ended question considering the most important things about living with MS. Study Aim: “As little is known about the needs and experiences of people severely affected by progressive or RRMS, we used a qualitative approach to investigate these issues” (page 102) Average interview time: not given. Interview time range: 30 - 60 minutes Analysis:
11) Finlayson (2004)Phenomenological approach27 (4♂) patients with MS Sub-types Not given Mean age: 62 years Age range: 55 - 82 years Mean time with illness: 20 years Mean time until diagnosis: 22 yearsSampling: purposive Eligibility: a) 55 years if older, b) diagnosed with MS for at least 15 years, c) speak English, d) access to a private location for interview. Setting: Patients homes Study geographical location: United States of AmericaData collection tool: semi structured interviews Study Aim: “exploratory study focused on describing the health concerns and service needs of older adults with MS… developing an understanding of living and aging with MS” (page 56) Average interview time: 107 minutes Interview time range: not given Analysis: thematic analysis accompanied with software
12) Finlayson et al. (2005) * same sample ? excluded for totalsMixed method27 (4♂) patients with MS Sub-types Not given Mean age: 62 years Age range: 55 - 82 years Mean time with illness: 22 years Mean time until diagnosis: 20 yearsSampling: purposive Eligibility: a) 55 years if older, b) diagnosed with MS for at least 15 years, c) speak English, d) access to a private location for interview. Setting: Patients homes Study geographical location: United States of AmericaData collection tool: Semi-structured interview guide which focused on the participants’ perspective of aging Study Aim: “For this reason, the authors set out to identify what people who are ageing with MS describe as the positive and negative aspects of living with the disease” (pages 117 - 118) Average interview time: 107 minutes Interview time range: Analysis: content analysis
13) Fallahi-Khoshknab et al. (2014)“naturalistic paradigm”25 (7♂) patients with MS Sub-types Not given Mean age: not given Age range: 20 - 55 years Mean time with illness: 10 years. Range 4 - 20 years. Mean time until diagnosis: not given.Sampling: purposive Eligibility: a) having MS for at least or more than 1 year, b) no hearing or speaking impairments, c), awareness of phenomenon that was being considered, d) no other pathological condition Setting: not given. Study geographical location: IranData collection tool: semi-structured interview. Questions considered thoughts and feelings following diagnosis Study Aim: “to elicit the experience of patients faced with an MS diagnosis and to explore its dimensions.” (page 276) Average interview time: 45 - 75 minutes. Interview time range: not known. Analysis: unclear
14) Fong et al. (2006) * same sample― excluded for totalsIn-depth interviews27 (4♂) patients with MS Sub-types Not given Mean age: 62 years Age range: 55 - 82 years Mean time with illness: 22 years Mean time until diagnosis: 20 yearsSampling: purposive Eligibility: a) 55 years if older, b) diagnosed with MS for at least 15 years, c) speak English, d) access to a private location for interview. Setting: Patients homes Study geographical location: United States of AmericaData collection tool: Semi-structured interview guide which focused on the participant’s perspective of aging Study Aim: “explore the social experiences of those aging with multiple sclerosis from their own perspective.” (page 696) Average interview time: 107 minutes Interview time range: Analysis: content analysis
15) Gagliardi et al. (2002)Naturalistic case study method18 (9♂) patients with MS Sub-types Not given Mean age: not given Age range: 27 - 61 years Mean time with illness: not given Mean time until diagnosis: not givenSampling: purposive Eligibility: (a) a diagnosis of MS Setting: in person or telephone interviews Study geographical location: United States of AmericaData collection tool: guided conversations using an in depth interview Study Aim: Consider what it is like to live with MS by analysing based on the Roy mode of adaptation Average interview time: Interview time range: Analysis: Roy adaptation rules for research
16) Gaskill et al. (2011)Mixed methods16 (5♂) patients with MS Sub-types Not given Mean age: 54 years Age range: 21 -64 years Mean time with illness: 15 years. Mean time until diagnosis: not givenSampling: purposive Eligibility: a) endorse suicide ideation, b) attended MS centre hospital, c) clinician diagnosis of MS, Setting: unclear. Study geographical location: United States of AmericaData collection tool: Open ended questions considered the context, meaning and function of suicide ideation, as well as association of suicide ideation with time of day, symptoms and family problems Study Aim: explore meanings of suicide ideation for individuals with MS Average interview time: Interview time range: 40 - 60 minutes Analysis: General thematic analysis
17) Hainsworth (1994)Structured interviews10 (1♂) patients with MS Sub-types Not given Mean age: 42.8 years Age range: 28 - 55 years Mean time with illness: 4 years Mean time until diagnosis: not givenSampling: Convenience Eligibility: (a) a diagnosis of MS Setting: patients home Study geographical location: United States of AmericaData collection tool: Burke Chronic Sorrow Interview Schedule. The questionnaire uses 16 question to determine the intensity, occurrence, when it can occur and what can influence it Study Aim: To examine the experiences of chronic sorrow in patients with MS Average interview time: not given. Interview time range: 60 - 90 minutes Analysis: content analysis
18) Hunt et al. (2013)Phenomenological approach5( 2♂) patients with MS Sub-types Not given Mean age: not given. Age range: 40 - 65 years Mean time with illness: not given. Range = 1 - 30 years Mean time until diagnosis: not given.Sampling: purposive Eligibility: a) living with MS, b) engaged with visual art work Setting: Private room in physiotherapy clinic Study geographical location: United KingdomData collection tool: semi-structured interview guide. Study Aim: “This qualitative study explored the meanings of leisure-based art- making for people living with multiple sclerosis” (page 2) Average interview time: 1 hour Interview time range: not given. Analysis: IPA
19) Irvine et al. (2009)Semi-structured focus group8 (1♂) patients with MS Sub-types Not given Mean age: 49 years Age range: 36 - 63 years Mean time with illness: 12.8 years Mean time until diagnosis: not givenSampling: purposive Eligibility: a) 18 years and older, b) diagnosed with MS for at least 5 years, c) willing and able to participate in a focus group Setting: MS charity location Study geographical location: United KingdomData collection tool: A semi structured interview guide. Focused on views about how MS affects individual’s day to day lives, the patient’s values and how they see themselves. Study Aim: “this study explored individuals’ subjective experiences of coping with the changes associated with MS and the adjustments required in relation to self and identity” (page 601) Average interview time: Interview time range: Analysis: IPA
20) Lsaksson et al. (2007)Mixed methods38 (12♂) patients with MS Sub-types RR 26 SP 9 PP 3 Mean age: 40.5 years Age range: 20 - 62 years Mean time with illness: 5 years Mean time until diagnosis: not givenSampling: purposive Eligibility: (a) clinically defined or laboratory supported diagnosis of MS Setting: Patient’s homes or room at a hospital Study geographical location: SwedenData collection tool: semi-structured interview Burke Chronic sorrow inventory. Focused on the patients concerns of chronic sorrow. Study Aim: “The overall aim of this study was to explore the presence and meaning of chronic sorrow in 61 persons with MS” (page 316) Average interview time: not given Interview time range: not given Analysis: latent content analysis
21) Isaksson and Ahlström (2008) * same sample― excluded for totalsDescriptive with semi-structured interviews38 (12♂) patients with MS Sub-types RR 26 SP 9 PP 3 Mean age: 40.5 years Age range: 20 - 62 years Mean time with illness: 5 years Mean time until diagnosis: not givenSampling: purposive Eligibility: (a) clinically defined or laboratory supported diagnosis of MS Setting: Patient’s homes or room at a hospital Study geographical location: SwedenData collection tool: semi-structured interview Burke Chronic sorrow inventory. Focused on the patients concerns of chronic sorrow Study Aim: “the goals of this study were to describe the method patients with MS use to mange choric sorrow and to apply these management methods to the theoretical model of chronic sorrow” (page 181) Average interview time: Interview time range: Analysis: latent content analysis
22) Kirkpatrick Pinson et al. (2009)Semi-structured interviews10 (0♂) patients with MS Sub-types Not given Mean age: 56.4 years Age range: 46 - 68 years Mean time with illness: 17.4 years Mean time until diagnosis: not givenSampling: purposive Eligibility: a) clinical diagnosis for at least 8 years, b) a diagnosis of progressive-relapsing, secondary progressive, or primary progressive type of multiple sclerosis, c) no major depression currently, d) self or physician assessment of successful coping. Setting: at participants home or convenient locations Study geographical location: United States of AmericaData collection tool: semi structured interview tool. Arranged around the precursors to coping. Study Aim: “report findings on how the precursors described above are expressed in women who are coping effectively with MS.” (page 184) Average interview time: not given Interview time range: not given Analysis: thematic analysis
23) Koch & Kelly (1999)Action research8 (0♂) patients with MS Sub-types Not given Mean age: not given Age range: 38 -75 years Mean time with illness: not given Mean time until diagnosis: not givenSampling: purposive Eligibility: a) a diagnosis of MS, b) incontinence Setting: not given Study geographical location: United KingdomData collection tool: focus groups discussing aspects around the aims Study Aim: “identify strategies for successfully managing urinary incontinence and what is important for the women who live with it” (page 15) Average interview time: not given Interview time range: not given Analysis: not given
24) Koch et al. (2001)Action research4 (0♂) patients with MS Sub-types Not given Mean age: not given Age range: not given Mean time with illness: not given Mean time until diagnosis: not givenSampling: purposive Eligibility: (a) a diagnosis of MS Setting: MS community centre Study geographical location: AustraliaData collection tool: focus group schedule. Consideration to question around experiences, perceptions and strategies associated with urinary incontinence. Study Aim: “address a noticeable absence in the research literature about MS related urinary incontinence by providing an understanding of how men and women perceived and articulate the implications of this problem” (page 16 - 17) Average interview time: 2 hours Interview time range: not given Analysis: not given
25) Malcomson et al. (2008)Focus groups13 (4♂) patients with MS Sub types 6 RR 6 SP 1 PP Mean age: 54 years Age range: 40 - 67 Mean time with illness: 17.2 years Mean time until diagnosis: not given.Sampling: purposive Eligibility: a) diagnosis of MS, b) self-belief that they were coping with the illness Setting: not clear (likely MS community centre) Study geographical location: United kingdomData collection tool: focus groups Study Aim: “the primary aim of this study was to explore personal accounts and experiences of individuals with MS who felt able to cope with the disease in day-to-day life” (page 663) Average interview time: 90 mins Interview time range: not given Analysis: thematic analysis
26) Lexell et al. (2009)Grounded theory10 (4♂) patients with MS Sub types 8 SP 2 RR Mean age: 53 years Age range: 41 - 67 years Mean time with illness: 17 years Mean time until diagnosis: not given.Sampling: purposive Eligibility: (a) ‘moderate’ limitations in occupational performance, (b) ability to take part in the interview, (3) no disease influencing occupational performance. Setting: Patients homes Study geographical location: SwedenData collection tool: semi-structure interview considering experiences and occupations currently engaged in and if change had occurred over time Study Aim: “gain an enhanced under-standing of how people with MS_ experience their engagement in occupations.” (page, 773) Average interview time: 82 mins Interview time range: 32 - 133 mins Analysis: constant comparison method
27) McLaughlin and Zeeberg (1993)EthnographyDenmark 51 (20♂) patients with MS Sub-types Not given Mean age: 40.8 Age range: 22 - 58 years Mean time with illness: 11 years. Range 3 - 18 years. Mean time until diagnosis: not given USA 35 (17♂) patients with MS Sub-types Not given Mean age: 42.4 years Age range: 19 - 65 years Mean time with illness: not given Mean time until diagnosis: not givenSampling: purposive Eligibility: (a) patients with MS Setting: Patient’s homes or workplace Study geographical location: DenmarkData collection tool: semi-structured interview schedule and structured interview schedule (self-care behaviour for MS inventory) Study Aim: “compares the extent of self-care behaviours of groups with MS in Denmark and in the United States” (page, 318) Average interview time: Interview time range: 1 - 5 hours Analysis: quantitative content analysis
28) Miller (1997)Phenomenological10 (3♂) patients with MS Sub-types Not given Mean age: not given Age range: 40 - 59 years Mean time with illness: not given. Range: 2 - 39 years Mean time until diagnosis: not given.Sampling: purposive Eligibility: a) willing and able to relate their experience b) diagnosed for greater than one year, c) with a disability score which indicated normal functioning, d) no cognitive deficits Setting: Clinic for MS patients Study geographical location: United States of AmericaData collection tool: semi-structured interview guide considering experience of the patient Study Aim: “patients need to be asked about their lived experience of MS so that we as health care professionals can address concerns and improve their quality of life” (page 296) Average interview time: not given Interview time range: not given Analysis: thematic analysis
29) Mozo-Dutton et al. (2012)IPA12(4♂) patients with MS Sub-types RR 3 SP 5 PP 1 B 1 Unknown 2 Mean age: 46 years Age range: 34 - 71 years Mean time with illness: 14 years Mean time until diagnosis: not givenSampling: purposive Eligibility: a) diagnosis of MS, b) aged over 18 years, c) able to consent to take part Setting: Patient’s home or “where they felt most comfortable” Study geographical location: United KingdomData collection tool: Semi structured interview guide questions focus on self pre and post illness as well as future view of self. Bio-psychosocial and practical implications of impact explored Study Aim: “search explicitly addressing the experience of self among people living with MS remains an important priority. This qualitative study aims to address this gap and build on previous literature, by conducting an in-depth exploration of personal perceptions of self and the perceived impact of MS on “ (page 1209-1210) Average interview time: not given. Interview time range: 40 - 75 mins Analysis: IPA
30) Norton and Chelvanayagam (2010)Internet Survey150 (36♂) patients with MS Sub-types RR 56 SP 47 PP 26 Don’t know 26 Mean age: not given. Median 50 years Age range: 19 - 73 years Mean time with illness: Mean time until diagnosis:Sampling: purposive Eligibility: (a) member of MS society UK Setting: Patients home via a computer Study geographical location: United kingdomData collection tool: open questions Study Aim: “Many people wrote at length about the bowel problems that they experience. This survey aimed to explore the issue in more detail in order to describe the impact bowel dysfunction has on the lives of people with MS, and to identify interventions that MS Society members find helpful that may warrant further investigation.” (page 2) Average interview time: not applicable Interview time range: not applicable Analysis: content analysis not clear
31) O’Connor et al. (2005)Mixed methods62 (22♂) patients with MS Sub-types Not given Mean age: 46 years Age range: 19 - 65 Mean time with illness: 12 years. Range 1 - 43 years Mean time until diagnosis: not given.Sampling: purposive Eligibility: a) diagnosis of MS, b) attending a hospital, c) aged between 18 - 65 years, Setting: Hospital Study geographical location: United KingdomData collection tool: semi-structured interview to consider experiences of MS and employment Study Aim: “identify factors that impact on work retention in patients with MS.” (page 892) Average interview time: not given Interview time range: not given Analysis: not given
32) Olsson et al. (2008)Phenomenological10 (0♂) patients with MS Sub-types 10 SP Mean age: 49 years Age range: 43 - 59 years Mean time with illness: 18.5 years. Range 2 - 29 years Mean time until diagnosis: not given.Sampling: purposive Eligibility: a) had a diagnosis of MS, b) attended a rehabilitation hospital for MS. Setting: rehabilitation centre Study geographical location: SwedenData collection tool: Telephone interview schedule Study Aim: Average interview time: not given Interview time range: 40 - 60 mins Analysis: Phenomenological hermeneutic interpretation
33) Olsson et al. (2010)Phenomenological15 (0♂) patients with MS Sub type SP 15 Mean age: not given. Median 54 years Age range: 35 - 70 years Mean time with illness: not given. Median 24 years. Range 7 - 34 years Mean time until diagnosis: not givenSampling: purposive Eligibility: a) female, b) diagnosis of secondary progressive MS Setting: Patients home Study geographical location: SwedenData collection tool: Telephone interview schedule Study Aim: “describe meanings of feeling well for women with MS.” (page 2) Average interview time: not given Interview time range: 40 - 60 mins Analysis: Phenomenological hermeneutic interpretation
34) Olsson et al. (2011) * same sample― excluded for totalsPhenomenological15 (0♂) patients with MS Sub type SP 15 Mean age: not given. Median 54 years Age range: 35 - 70 years Mean time with illness: not given. Median 24 years. Range 7 - 34 years Mean time until diagnosis: not givenSampling: purposive Eligibility: a) female, b) diagnosis of secondary progressive MS Setting: Patients home Study geographical location: SwedenData collection tool: Telephone interview schedule Study Aim: “elucidate meanings of being received and met by others as experienced by women with MS” (page 2) Average interview time: not given Interview time range: 40 - 60 mins Analysis: Phenomenological hermeneutic interpretation
35) Pakeman (2008)Mixed methods145 (25*♂) patients with MS Sub-type Not given. Mean age: 49 years Age range: 21 - 80 years Mean time with illness: not given Mean time until diagnosis: not given *numbers estimatedSampling: purposive Eligibility: a) Member of MS society, b) diagnosis of MS Setting: home Study geographical location: AustraliaData collection tool: Postal survey. If patients indicated they could make sense of the MS one open ended question about how individual make sense of their MS. Study Aim: “this report presents qualitative and quantitative data on sense making collected from a larger study designed to examine coping processes in adaptation to MS and caregiving” (page 96) Average interview time: not applicable Interview time range: not applicable Analysis: quantitative content analysis
36) Ploughman et al. (2012)Semi structured interviews18 (4♂) patients with MS Sub-types RR 3 PP 2 SP 10 B 1 Unknown 2 Mean age: 66.5 years Age range: 56 - 80 years Mean time with illness: 33.5 years. Range 20 - 50 years Mean time until diagnosis: not givenSampling: purposive Eligibility: a) diagnosis of MS, b) aged over 55 years, c) had MS for at least 20 years, c) patients who lived over 1.5 hours from researcher group Setting: home (not identified implied) Study geographical location: CanadaData collection tool: semi-structured interview Focused on experience, interactions, relationships, typical day and strategies to deal with Ms Study Aim: “describe the factors influencing health aging from the perspective of the older person with MS” (page, 27) Average interview time: not known Interview time range: 60 - 80 minutes Analysis: thematic and INVIVO computer software
37) Prunty et al. (2008)Focus groups20 (0♂) patients with MS Sub types RR 12 PP 2 SP 2 Unknown 4 Mean age: 32 years Age range: 20 - 40 years Mean time with illness: 6.5 years. Mean time until diagnosis: not given.Sampling: purposive Eligibility: (a) member of the MS society Setting: not identified. MS community locaitonlikely. Study geographical location: AustraliaData collection tool: focus groups Study Aim: “document the main themes and concerns for women with MS considering motherhood” (page 701) Average interview time: 60 mins Interview time range: not given Analysis: thematic analysis
38) Reynolds and Prior (2003)Phenomenological27 (0♂) patients with MS Sub-types not given Mean age: not given. Median 48. Age range: 32 - 75 years Mean time with illness: not given. Median 14 years. Range 2 - 37 years Mean time until diagnosis: not given.Sampling: purposive Eligibility: (a) lived with a diagnosis of MS for more than 5 years Setting: Patients, home, at clinic and by telephone Study geographical location: United KingdomData collection tool: semi-structured interview guide Study Aim: “we explore women’s strategies for achieving an acceptable quality of life” (page 1228) Average interview time: not given Interview time range: not given. Analysis: thematic analysis
39) Robinson (1990)Narrative50 (?♂) patients with MS Mean age: not given Age range: not given Mean time with illness: not given Mean time until diagnosis: not given.Sampling: purposive Eligibility: (a) diagnosis with Ms Setting: home Study geographical location: United KingdomData collection tool: Written life stories from people with Ms Study Aim: “people were enjoined to write their life stories including anything in their lives―events, experiences or feelings which was important to them.” (page 1177) Average interview time: not given Interview time range: not given Analysis: narrative analysis
 ReferencesLubin, F.D., Reingold, S.C., Cohen, J.A., Cutter, G.R., S&oslash;rensen, P.S., et al. (2014) Defining the Clinical Course of Multiple Sclerosis: The 2013 Revision. Neurology, 83, 278-286. <br />http://dx.doi.org/10.1212/WNL.0000000000000560Coleman, C.I., Sidovar, M.F., Roberts, M.S. and Kohn, C. (2013) Impact of Mobility Impairment on Indirect Costs and Health-Related Quality of Life in Multiple Sclerosis. PLoS ONE, 8, e54756. <br />http://dx.doi.org/10.1371/journal.pone.0054756Zwibel, H.L. and Smrtka, J. (2011) Improving Quality of Life in Multiple Sclerosis: An Unmet Need. The American Journal of Managed Care, 17, S139-S145.Mackenzie, I.S., Morant, S.V., Bloomfield, G.A., MacDonald, T.M. and O’Riordan, J.I. (2013) Changing Face of Multiple Sclerosis in the United Kingdom 1990-2010. An Incidence and Prevalence Study. Journal of Neurology, Neurosurgery & Psychiatry, 84, e2. <br />http://dx.doi.org/10.1136/jnnp-2013-306573.27McCrone, P., Heslin, M., Knapp, M., Bull, P. and Thompson, A. (2008) Multiple Sclerosis in the UK Service Use, Costs, Quality of Life and Disability. Phamacoeconomics, 26, 847-860. <br />http://dx.doi.org/10.2165/00019053-200826100-00005Simmons, R.D. (2010) Life Issues in Multiple Sclerosis. Nature Reviews in Neurology, 6, 603-610. <br />http://dx.doi.org/10.1038/nrneurol.2010.143Hartley, S., McArthur, M., Coenen, M., Cabello, M., Covelli, V., Roszczynska-Michta, J., et al. (2014) Narratives Reflecting the Lived Experiences of People with Brain Disorders: Common Psychosocial Difficulties and Determinants. PLoS ONE, 9, e96890. <br />http://dx.doi.org/10.1371/journal.pone.0096890Mitchell, A.J., Benito-León, J., Gonzàlez, J.M.M. and Rivera-Navarro, J. (2005) Quality of Life and Its Assessment in Multiple Sclerosis: Integrating Physical and Psychological Components of Wellbeing. Lancet Neurology, 4, 556-566. http://dx.doi.org/10.1016/S1474-4422(05)70166-6Dennison, L., Moss-Morris, R. and Chalder, T. (2009) A Review of the Psychological Correlates of Adjustment in Patients with Multiple Sclerosis. Clinical Psychology Review, 29, 141-153. <br />http://dx.doi.org/10.1016/j.cpr.2008.12.001Lynch, S.G., Kroencke, D.C. and Denney, D.R. (2001) The Relationship between Disability and Depression in Multiple Sclerosis: The Role of Uncertainty, Coping and Hope. Multiple Sclerosis Journal, 7, 411-416. <br />http://dx.doi.org/10.1177/135245850100700611Soundy, A., Smith, B., Dawes, H., Pall, H., Gimbrere, K. and Ramsay, J. (2013) Patients Expression of Hope and Illness Narratives in Three Neurological Conditions: A Meta-Ethnography. Health Psychology Review, 7, 177-201. http://dx.doi.org/10.1080/17437199.2011.568856Soundy, A. and Condon, N. (2015) Patients Experiences of Maintaining Mental Well-Being and Hope within Motorneuron Disease: A Thematic Synthesis. Frontiers in Psychology, 6, 606.Wright, B.A. (1983) Physical Disability—A Psychosocial Approach. Harper & Row, New York.Smedema, S.M., Bakken-Gillen, S.K. and Dalton, J. (2009) Psychosocial Adaptation to Chronic Illness and Disability: Models and Measurement. In: Chan, F., Da Silva Cardoso, E. and Chronister, J.A., Eds., Understanding Psychosocial Adjustment to Chronic Illness and Disability: A Handbook for Evidence-Based Practitioners in Rehabilitation, Springer, New York, 51-68.Skinner, E.A., Edge, K., Altman, J. and Sherwood, H. (2003) Searching for the Structure of Coping: A Review and Critique of Category Systems for Classifying Ways of Coping. Psychological Bulletin, 129, 216-269. http://dx.doi.org/10.1037/0033-2909.129.2.216Skinner, E.A. and Zimmer-Gembeck, M.J. (2007) The Development of Coping. Annual Review of Clinical Psychology, 58, 119-144. http://dx.doi.org/10.1146/annurev.psych.58.110405.085705Schulman-Green, D., Jaser, S.S., Martin, F., Alonzo, A., Grey, M., McCorkle, R., et al. (2012) Processes of Self- Management in Chronic Illness. Journal of Nursing Scholarship, 44, 136-144. <br />http://dx.doi.org/10.1111/j.1547-5069.2012.01444.xde Ridder, D.T.D. and de Wit, J.B.F. (2006) Self-Regulation in Health Behaviour: Concepts, Theories, and Central Issues. In: de Ridder, D.T.D. and de Wit, J.B.F., Eds., Self-Regulation in Health Behaviour, Wiley & Son, Chichester, 1-23. http://dx.doi.org/10.1002/9780470713150.ch1Leventhal, H., Meyer, D. and Nerenz, D. (1980) The Common Sense Representation of Illness Danger. In: Rachman, S., Ed., Medical Psychology, Volume 2, Pergamon Press, New York, 7-30.Hale, E.D., Treharne, G.J. and Kitas, G.D. (2007) The Common-Sense Model of Self-Regulation of Health How Can We Use It to Understand and Response to Our Patients. Rheumatology, 46, 904-906. <br />http://dx.doi.org/10.1093/rheumatology/kem060Compas, B.E., Jaser, S.S., Dunn, M.J. and Rodriguez, E.M. (2012) Coping with Chronic Illness in Childhood and Adolescence. Annual Review of Clinical Psychology, 8, 455-480. <br />http://dx.doi.org/10.1146/annurev-clinpsy-032511-143108Eaton, R.J., Baradley, G. and Morrissey, S. (2014) Positive Predispositions, Quality of Life and Chronic Illness. Psychology, Health and Medicine, 19, 473-489. <br />http://dx.doi.org/10.1080/13548506.2013.824593Carver, C.S. and Connor-Smith, J. (2010) Personality and Coping. Annual Review of Psychology, 61, 679-704. http://dx.doi.org/10.1146/annurev.psych.093008.100352Methley, A.M., Campbell, S.M., Chew-Graham, C. and Cheraghi-Sohi, S. (2014) Experiences of UK Health-Care Services for People with Multiple Sclerosis: A Systematic Narrative Review. Health Expectations, 18, 1844-1855. http://dx.doi.org/10.1111/hex.12228Soundy, A., Benson, J., Dawes, H., Smith, B., Collette, J. and Meaney, A. (2012) Understanding Hope in Patients with Multiple Sclerosis. Physiotherapy, 98, 349-355. <br />http://dx.doi.org/10.1016/j.physio.2011.05.003Soundy, A., Sayers, J., Stubbs, B. and Roskell, C. (2014) Don’t Take My Hope Away: Understanding the Patient’s Hope in Neurological Rehabilitation. International Journal of Therapy and Rehabilitation, 21, 257-258. http://dx.doi.org/10.12968/ijtr.2014.21.6.257Thomas, J. and Harden, A. (2008) Methods for the Thematic Synthesis of Qualitative Research in Systematic Reviews. BMC Medical Research Methodology, 8, 45. <br />http://dx.doi.org/10.1186/1471-2288-8-45Cooke, A., Smith, D. and Booth, A. (2012) Beyond PICO: The SPIDER Tool for Qualitative Evidence Synthesis. Qualitative Health Research, 22, 1435-1443. <br />http://dx.doi.org/10.1177/1049732312452938Garside, R. (2014) Should We Appraise the Quality of Qualitative Research Reports for Systematic Reviews, and If So, How? Innovation: The European Journal of Social Science Research, 27, 67-79. <br />http://dx.doi.org/10.1080/13511610.2013.777270Tong, A., Sainsbury, P. and Craig, J. (2007) Consolidated Criteria for Reporting Qualitative Research (COREQ): A 32-Item Checklist for Interviews and Focus Groups. International Journal for Quality in Health Care, 19, 349-357. http://dx.doi.org/10.1093/intqhc/mzm042Hole, E., Stubbs, B., Roskell, C. and Soundy, A. (2014) The Patient’s Experience of the Psychosocial Process That Influences Identity Following Stroke Rehabilitation: A Meta-Ethnography. The Scientific World Journal, 2014, 1-13.Soundy, A., Stubbs, B., Freeman, P., Coffee, P. and Roskell, C. (2014) Factors Influencing Patients’ Hope in Stroke and Spinal Cord Injury: A Narrative Review. International Journal of Therapy and Rehabilitation, 21, 210-218. http://dx.doi.org/10.12968/ijtr.2014.21.5.210Soundy, A., Stubbs, B. and Roskell, C. (2014) The Experience of Parkinson’s Disease: A Systematic Review and Meta-Ethnography. The Scientific World Journal, 2014, Article ID: 613592. <br />http://dx.doi.org/10.1155/2014/613592Carroll, C., Booth, A. and Cooper, K. (2011) A Worked Example of “Best Fit” Framework Synthesis: A Systematic Review of Views concerning the Taking of Some Potential Chemo Preventive Agents. BMC Medical Research Methodology, 11, 1-9. http://dx.doi.org/10.1186/1471-2288-11-29Dixon-Woods, M. (2011) Using Framework-Based Synthesis for Conducting Reviews of Qualitative Studies. BMC Medicine, 9, 1-2. http://dx.doi.org/10.1186/1741-7015-9-39Soundy, A., Liles, C., Stubbs, B. and Roskell, C. (2014) Identifying a Framework for Hope in Order to Establish the Importance of Generalised Hopes for Individuals Who Have Suffered a Stroke. Advances in Medicine, 2014, Article ID: 471874.Soundy, A., Smith, B., Butler, M., Minns-Lowe, C., Dawes, H. and Winward, C.E. (2010) A Qualitative Study in Neurological Physiotherapy and Hope: Beyond Physical Improvement. Physiotherapy Theory and Practice, 26, 79-88. http://dx.doi.org/10.3109/09593980802634466Pope, C., Mays, N. and Popay, J. (2007) Synthesizing Qualitative and Quantitative Health Research: A Guide to Methods. Open University Press, Berkshire.Russell, J.A. (1980) A Circumplex Model of Affect. Journal of Personality and Social Psychology, 39, 1161-1178. http://dx.doi.org/10.1037/h0077714Koole, S.L. (2009) The Psychology of Emotional Regulation: An Integrative Review. Cognition and Emotion, 23, 4- 41. http://dx.doi.org/10.1080/02699930802619031Bradbury-Jones, C., Taylor, J. and Herber, O. (2014) How Theory Is Used and Articulated in Qualitative Research: Development of a New Typology. Social Science & Medicine, 120, 135-141. <br />http://dx.doi.org/10.1016/j.socscimed.2014.09.014Weed, M. (2008) A Potential Method for the Interpretive Synthesis of Qualitative Research: Issues in the Development of Meta-Interpretation. International Journal of Social Research Methodology, 11, 13-28. <br />http://dx.doi.org/10.1080/13645570701401222Ahlstr&ouml;m, G. (2007) Experiences of Loss and Chronic Sorrow in Persons with Severe Chronic Illness. Journal of Nursing and Healthcare in Chronic Illness, 16, 76-83. <br />http://dx.doi.org/10.1111/j.1365-2702.2006.01580.xBarker-Collo, S., Cartwright, C. and Read, J. (2006) Into the Unknown: The Experiences of Individuals Living with Multiple Sclerosis. Journal of Neuroscience Nursing, 38, 435-446. <br />http://dx.doi.org/10.1097/01376517-200612000-00008Boeije, H. (2002) A Purposeful Approach to the Constant Comparative Method in the Analysis of Interviews. Quality and Quantity, 36, 391-409. <br />http://dx.doi.org/10.1023/A:1020909529486Boland, P., Levack, W.M.M., Hudson, S. and Bell, E.M. (2012) Coping with Multiple Sclerosis as a Couple: “Peaks and Troughs”—An Interpretative Phenomenological Exploration. Disability and Rehabilitation, 34, 1367-1375. <br />http://dx.doi.org/10.3109/09638288.2011.645115Boyd, J.R. and MacMillan, L.J. (2005) Experiences of Children and Adolescents Living with Multiple Sclerosis. Journal of Neuroscience Nursing, 37, 334-342.Courts, N.F., Buchanan, E.M. and Werstelin, P.O. (2004) Gocu Groups: The Lived Experience of Participants with Multiple Sclerosis. Journal of Neuroscience Nursing, 36, 42-47. <br />http://dx.doi.org/10.1097/01376517-200402000-00007Dennison, L., Yardley, L., Devereux, A. and Moss-Morris, R. (2010) Experiences of Adjusting to Early Stage Multiple Sclerosis. Journal of Health Psychology, 16, 478-488. <br />http://dx.doi.org/10.1177/1359105310384299Dilorenzo, T.A., Becker-Feigeles, J., Halper, J. and Picone, M.A. (2008) A Qualitative Investigation of Adaptation in Older Individuals with Multiple Sclerosis. Disability and Rehabilitation, 30, 1088-1097. <br />http://dx.doi.org/10.1080/09638280701464256Dyck, I. and Jongbloed, L. (2000) Women with Multiple Sclerosis and Employment Issues: A Focus on Social and Institutional Environments. Canadian Journal of Occupational Therapy, 67, 337-346. <br />http://dx.doi.org/10.1177/000841740006700506Edmonds, P., Vivat, B., Burman, R., Silber, E. and Higginson, I.J. (2007) Loss and Change: Experiences of People Severely Affected by Multiple Sclerosis. Palliative Medicine, 21, 101-107. <br />http://dx.doi.org/10.1177/0269216307076333Finlayson, M. (2004) Concerns about the Future among Older Adults with Multiple Sclerosis. American Journal of Occupational Therapy, 58, 54-63. http://dx.doi.org/10.5014/ajot.58.1.54Finlayson, M., Van Denend, T. and Julie, D. (2005) Older Adults’ Perspectives on the Positive and Negative Aspects of Living with Multiple Sclerosis. British Journal of Occupational Therapy, 68, 117-124. <br />http://dx.doi.org/10.1177/030802260506800304Fallahi-Khoshknab, M., Ghafari, S., Nourozi, K. and Mohammadi, E. (2014) Confronting the Diagnosis of Multiple Sclerosis: A Qualitative Study of Patients Experiences. The Journal of Nursing Research, 22, 275-282. http://dx.doi.org/10.1097/jnr.0000000000000058Fong, T., Finlayson, M. and Peacock, N. (2006) The Social Experience of Aging with a Chronic Illness: Perspectives of Older Adults with Multiple Sclerosis. Disability and Rehabilitation, 28, 695-705. http://dx.doi.org/10.1080/09638280500277495Gagliardi, B.A., Frederickson, K. and Shanley, D.A. (2002) Living with Multiple Sclerosis: A Roy Adaptation Model-Based Study. Nursing Science Quarterly, 15, 230-236. <br />http://dx.doi.org/10.1177/08918402015003009Gaskill, A., Foley, F.W., Kolzet, J. and Picone, M.A. (2011) Suicidal Thinking in Multiple Sclerosis. Disability and Rehabilitation, 33, 1528-1536. <br />http://dx.doi.org/10.3109/09638288.2010.533813Hainsworth, M.A. (1994) Living with Multiple Sclerosis: The Experience of Chronic Sorrow. The Journal of Neuroscience Nursing, 26, 237-240. <br />http://dx.doi.org/10.1097/01376517-199408000-00008Hunt, L., Nikopoulou-Smyrni, P. and Reynolds, F. (2014) “It Gave Me Something Big in My Life to Wonder and Think about Which Took over the Space … and Not MS”: Managing Well-Being in Multiple Sclerosis through Art- Making. Disability and Rehabilitation, 36, 1139-1147. <br />http://dx.doi.org/10.3109/09638288.2013.833303Irvine, H., Davidson, C., Hoy, K. and Lowe-Strong, A. (2009) Psychosocial Adjustment to Multiple Sclerosis: Exploration of Identity Redefinition. Disability and Rehabilitation, 31, 599-606. <br />http://dx.doi.org/10.1080/09638280802243286Isaksson, A.-K., Gunnarsson, L.-G. and Ahlstr&ouml;m, G. (2007) The Presence and Meaning of Chronic Sorrow in Patients with Multiple Sclerosis. Journal of Nursing and Healthcare in Chronic Illness, 16, 315-324. <br />http://dx.doi.org/10.1111/j.1365-2702.2007.01995.xIsaksson, A.-K. and Ahlstr&ouml;m, G. (2008) Managing Chronic Sorrow: Experiences of Patients with Multiple Sclerosis. Journal of Neuroscience Nursing, 40, 180-191. <br />http://dx.doi.org/10.1097/01376517-200806000-00009Pinson, D.M.K., Ottens, A.J. and Fisher, T.A. (2009) Women Coping Successfully with Multiple Sclerosis and the Precursors of Change. Qualitative Health Research, 19, 181-193. <br />http://dx.doi.org/10.1177/1049732308329465Koch, T. and Kelly, S. (1999) Understanding What Is Important for Women Who Live with Multiple Sclerosis. The Australian Journal of Holistic Nursing, 6, 14-24.Koch, T., Kralik, D., Eastwood, S. and Schofield, A. (2001) Breaking the Silence: Women Living with Multiple Sclerosis and Urinary Incontinence. International Journal of Nursing Practice, 7, 16-23. <br />http://dx.doi.org/10.1046/j.1440-172x.2001.00241.xMalcomson, K.S., Lowe-Strong, A.S. and Dunwoody, L. (2008) What We Can Learn from the Personal Insights of Individuals Living and Coping with Multiple Sclerosis. Disability and Rehabilitation, 30, 662-674. <br />http://dx.doi.org/10.1080/09638280701400730Lexell, E.M., Lund, M.L. and Iwarsson, S. (2009) Constantly Changing Lives: Experiences of People with Multiple Sclerosis. American Journal of Occupational Therapy, 63, 772-781. <br />http://dx.doi.org/10.5014/ajot.63.6.772McLaughlin, J. and Zeeberg, I. (1993) Self-Care and Multiple Sclerosis: A View from Two Cultures. Social Science & Medicine, 37, 315-329. <br />http://dx.doi.org/10.1016/0277-9536(93)90263-4Miller, C.M. (1997) The Lived Experience of Relapsing Multiple Sclerosis: A Phenomenological Study. Journal of Neuroscience Nursing, 29, 294-304. <br />http://dx.doi.org/10.1097/01376517-199710000-00003Mozo-Dutton, L., Simpson, J. and Boot, J. (2012) MS and Me: Exploring the Impact of Multiple Sclerosis on Perceptions of Self. Disability and Rehabilitation, 34, 1208-1217. <br />http://dx.doi.org/10.3109/09638288.2011.638032Norton, C. and Chelvanayagam, S. (2010) Bowel Problems and Coping Strategies in People with Multiple Sclerosis. British Journal of Nursing, 19, 220-226. <br />http://dx.doi.org/10.12968/bjon.2010.19.4.46783O’Connor, R.J., Cano, S.J., Torrenta, L.R.I. and Playford, E.D. (2005) Factors Influencing Work Retention for People with Multiple Sclerosis Cross-Sectional Studies Using Qualitative and Quantitative Methods. Journal of Neurology, 252, 892-896. <br />http://dx.doi.org/10.1007/s00415-005-0765-4Olsson, M., Lexell, J. and S&ouml;dergerg, S. (2008) The Meaning of Women’s Experiences of Living with Multiple Sclerosis. Health Care for Women International, 29, 416-430. <br />http://dx.doi.org/10.1080/07399330701876646Olsson, M., Sk&auml;r, L. and S&ouml;derberg, S. (2010) Meanings of Feeling Well for Women with Multiple Sclerosis. Qualitative Health Research, 20, 1254-1261. <br />http://dx.doi.org/10.1177/1049732310371103Olsson, M., Sk&auml;r, L. and S&ouml;derberg, S. (2011) Meanings of Being Received and Met by Others as Experienced by Women with MS. International Journal of Qualitative Studies on Health and Well-Being, 6, 1-8. <br />http://dx.doi.org/10.3402/qhw.v6i1.5769Ploughman, M., Austin, M.W., Murdoch, M., Kearney, A., Fisk, J.D., Godwin, M. and Stefanelli, M. (2012) Factors Influencing Healthy Aging with Multiple Sclerosis: A Qualitative Study. Disability and Rehabilitation, 34, 26-33. <br />http://dx.doi.org/10.3109/09638288.2011.585212Prunty, M., Sharpe, L., Butow, P. and Fulcher, G. (2008) The Motherhood Choice: Themes Arising in the Decision- Making Process for Women with Multiple Sclerosis. Multiple Sclerosis, 14, 701-704. <br />http://dx.doi.org/10.1177/1352458507086103Reynolds, F. and Prior, S. (2003) ‘‘Sticking Jewels in Your Life’’: Exploring Women’s Strategies for Negotiating an Acceptable Quality of Life with Multiple Sclerosis. Qualitative Health Research, 13, 1225-1251. http://dx.doi.org/10.1177/1049732303257108Robinson, I. (1990) Personal Narrative, Social Careers and Medical Courses: Analyzing Life Trajectories in Autobiographies of People with Multiple Sclerosis. Social Science and Medicine, 30, 1173-1186. <br />http://dx.doi.org/10.1016/0277-9536(90)90257-SSchneider, M. and Young, N. (2010) “So This Is My New Life”: A Qualitative Examination of Women Living with Multiple Sclerosis and the Coping Strategies They Use When Accessing Physical Activity. Disability Studies Quarterly, 30, 1-13.Somerset, M., Sharp, D. and Campbell, R. (2002) Multiple Sclerosis and Quality of Life: A Qualitative Investigation. Journal of Health Services Research and Policy, 7, 151-159. <br />http://dx.doi.org/10.1258/135581902760082454Thorne, S., Con, A., McGuinness, L., McPherson, G. and Harris, S.R. (2004) Health Care Communication Issues in Multiple Sclerosis: An Interpretive Description. Qualitative Health Research, 14, 5-22. <br />http://dx.doi.org/10.1177/1049732303259618Thannhauser, J.E. (2009) Grief-Peer Dynamics: Understanding Experiences with Pediatric Multiple Sclerosis. Qualitative Health Research, 19, 766-777. <br />http://dx.doi.org/10.1177/1049732309334859Riessman, C.K. (2003) Performing Identities in Illness Narrative: Masculinity and Multiple Sclerosis. Qualitative Research, 3, 5-33. http://dx.doi.org/10.1177/146879410300300101Isaksson, A.-K. and Ahlstr&ouml;m, G. (2006) From Symptom to Diagnosis: Illness Experiences of Multiple Sclerosis Patients. Journal of Neuroscience Nursing, 38, 229-237. <br />http://dx.doi.org/10.1097/01376517-200608000-00005Wollin, J.A., Yates, P.M. and Kristjanson, L.J. (2006) Supportive and Palliative Care Needs Identified by Multiple Sclerosis Patients and Their Families. International Journal of Palliative Nursing, 12, 20-26. <br />http://dx.doi.org/10.12968/ijpn.2006.12.1.20392Soundy, A., Smith, B., Butler, M., Minns-Lowe, C., Dawes, H. and Windward, C.H. (2010) A Qualitative Study in Neurological Physiotherapy and Hope: Beyond Physical Improvement. Physiotherapy Theory and Practice, 26, 1-10. http://dx.doi.org/10.3109/09593980802634466Livneh H. ,et al. (1986)A Unified Approach to Existing Models of Adaptation to Disability: Part 1: A Model of Adaptation Journal of Applied Rehabilitation Counseling 17, 5-16.Arnett, P.A., Barwick, F.H. and Beeney, J.E. (2008) Depression in Multiple Sclerosis: Review and Theoretical Proposal. Journal of the International Neuropsychological Society, 14, 691-724. <br />http://dx.doi.org/10.1017/S1355617708081174Becker, E. (1973) The Denial of Death. Free Press, New York.Barnard, D. (1995) Chronic Illness and the Dynamics of Hoping. In: Toombs, S.K., Barnard, D. and Carson, R.A., Eds., Chronic Illness from Experience to Policy, Indiana University Press, Indiana.Taylor, S.E. (1983) Adjustment to Threatening Events: A Theory of Cognitive Adaptation. American Psychologist, 38, 1161-1173. http://dx.doi.org/10.1037/0003-066X.38.11.1161Ratelle, C.F., Vallerand, J., Chantal, Y. and Provencher, P. (2004) Cognitive Adaptation and Mental Health: A Motivational Analysis. European Journal of Social Psychology, 34, 459-476. <br />http://dx.doi.org/10.1002/ejsp.208Chambers, R., Gullone, E. and Allen, N.B. (2009) Mindful Emotion Regulation: An Integrative Review. Clinical Psychology Review, 29, 560-572. http://dx.doi.org/10.1016/j.cpr.2009.06.005Soundy, A., Roskell, C., Stubbs, B., Collett, J., Dawes, H. and Smith, B. (2014) Do You Hear What Your Patient Is Telling You? Understanding the Meaning behind the Narrative. Way Ahead, 18, 10-13.Lode, K., Larsen, J.P., Bru, E., Klevan, G., Myhr, K.M. and Nyland, H. (2007) Patient Information and Coping Styles in Multiple Sclerosis. Multiple Sclerosis, 13, 792-799. <br />http://dx.doi.org/10.1177/1352458506073482Aldao, A., Nolen-Hoeksema, S. and Schweizer, S. (2010) Emotion-Regulation Strategies across Psychopathology: A Meta-Analytic Review. Clinical Psychology Review, 30, 217-237. <br />http://dx.doi.org/10.1016/j.cpr.2009.11.004Carver, C.S. and Scheier, M.F. (1998) On Self-Regulation and Behaviour. Cambridge University Press, New York. http://dx.doi.org/10.1017/CBO9781139174794Carver, C.S. (2004) Self-Regulation of Action and Affect. In: Baumeister, R.F. and Vohs, K.D., Eds., Handbook of Self-Regulation Research, Theory, and Applications, Guildford Press, New York, 13-39.Bornstein, R.F. (2012) From Dysfunction to Adaptation: An Integrationist Model of Dependency. Annual Review of Clinical Psychology, 8, 291-316. <br />http://dx.doi.org/10.1146/annurev-clinpsy-032511-143058Wang, S., Roche, M.J., Pincu, A.L., Conroy, D.E., Rebar, A. and Ram, N. (2014) Interpersonal Dependency and Emotion in Every Day Life. Journal of Research in Personality, 53, 5-12. <br />http://dx.doi.org/10.1016/j.jrp.2014.07.007Bodenheimer, T., Wagner, E.H. and Grumbach, K. (2002) Improving Primary Care for Patients with Chronic Illness. Journal of the American Medical Association, 288, 261-268.Delmar, C., B&oslash;je, T., Dylmer, D., Forup, L., Jakobsen, C., M&oslash;ller, M., et al. (2006) Independence/Dependence—A Contradictory Relationship? Life with a Chronic Illness. Scandinavian Journal of Caring Sciences, 20, 261-268. http://dx.doi.org/10.1111/j.1471-6712.2006.00403.xGuo, Q. and Jacelon, C.S. (2014) An Integrative Review of Dignity in the End-of-Life Care. Palliative Medicine, 28, 931-940. http://dx.doi.org/10.1177/0269216314528399Berwick, D.M., Nolan, T.W. and Whittington, J. (2012) The Triple Aim: Care, Health and Cost. Health Affairs, 27, 759-769. http://dx.doi.org/10.1377/hlthaff.27.3.759Aujoulat, I., Marcolongo, R., Bonadiman, L. and Deccache, A. (2008) Reconsidering Patient Empowerment in Chronic Illness: A Critique of Models of Self-Efficacy and Bodily Control. Social Science & Medicine, 66, 1228-1239. http://dx.doi.org/10.1016/j.socscimed.2007.11.034Windle, G. (2011) What Is Resilience? A Review and Concept Analysis. Reviews in Clinical Gerontology, 21, 152- 169. http://dx.doi.org/10.1017/S0959259810000420Baumeister, R.F., Bratslavsky, E., Muraven, M. and Tice, D.M. (1998) Ego-Depletion: Is the Active Self a Limited Resource? Journal of Personality and Social Psychology, 74, 1252-1265. <br /> http://dx.doi.org/10.1037/0022-3514.74.5.1252Telford, K., Kralik, D. and Koch, T. (2006) Acceptance and Denial: Implications for People Adapting to Chronic Illness: Literature Review. Journal of Advanced Nursing, 55, 457-464. <br />http://dx.doi.org/10.1111/j.1365-2648.2006.03942.xDuggleby, W., Hicks, D., Nekolaichuk, C., Holtstlander, L., Williams, A., Chambers, T., et al. (2012) Hope, Older Adults, and Chronic Illness: A Metasynthesis of Qualitative Research. Journal of Advanced Nursing, 68, 1211-1223. http://dx.doi.org/10.1111/j.1365-2648.2011.05919.xSteptoe, A., Shankar, A., Panayotes, D. and Wardle, J. (2013) Social Isolation, Loneliness, and All-Cause Mortality in Older Men and Women. Proceedings of the National Academy of Sciences of the United States of America, 110, 5797- 5801. http://dx.doi.org/10.1073/pnas.1219686110