Introduction
Cognitive Analytic Therapy
Aims
Integrative Review
Method
Search Strategy
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“Multiple Sclerosis”
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AND (relationships OR impact)
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AND (family OR spouse OR identity OR social support)
Data Evaluation
Item definition | |
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Rationale-aims | A: positive if the objective of the study was sufficiently described |
Demographic variables | B: positive if information was reported on pwMS gender, age, disease type/course, disease severity, time since diagnosis, current MS status (at least 3 of these) AND if a relative-focused study: their gender, age, nature of their relationship with pwMS as well as the previous |
Suitability of the design to answering the research question | C: positive if appropriate research design was used, e.g. positive if control group was used when comparing psychopathology to the healthy population, if cross sectional design was used to find associations among the variables (not suggest causality or predictors), or qualitative methods were used to investigate in depth pwMS’ or relatives’ experiences |
D: positive if control group was equivalent in age, sex and socioeconomic status with the single difference that the person did not have MS (comparative studies only) | |
E: positive when analysing different age groups separately when people in a wide age span were studied, or positive when studying a specific age group only | |
Statistical analysis | F: positive if appropriate statistical methods of analysis were used for the data |
Presentation of the analysis | G: positive if the graphs and tables were easy to understand, e.g., presenting a table for regression analyses including R
2
values and β weights |
H: the confidence intervals or p-values were given for the main results | |
Measures used | I: positive if all the questionnaires used were standardized, defined as questionnaires that had been validated and published or psychometric data of new measures were presented |
Conclusions | J: positive if the conclusions were justified based on the research findings |
Limitations | K: positive if key limitations were mentioned |
Item definition | |
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Report explicit scientific context and purpose | A: positive if the manuscript specified where the study fitted within relevant literature and stated the intended purposes or questions of the study |
Situating the sample | B: positive if authors described the research participants and their life circumstances to aid the reader in judging the range of people and situations to which the findings might be relevant |
Appropriate methods | C: positive if the methods and procedures used were appropriate or responsive to the intended purposes or questions of the study |
Specification of methods | D: positive if authors reported all procedures for gathering data, including specific questions posed to participants. Ways of organizing the data and methods of analysis were also specified |
Clarity of presentation | E: positive if the manuscript was well-organized and clearly written, with technical terms defined |
Grounding in examples | F: positive if authors provided examples of the data to illustrate both the analytic procedures used in the study and the understanding developed in the light of them |
Providing credibility checks | G: positive if credibility checks were provided where relevant, these may include (a) checking these understandings with the original informants or others similar to them, (b) using multiple qualitative analysts, (c) comparing two or more varied qualitative perspectives, or (d) where appropriate, “triangulation” with external factors (e.g. outcome or recovery) or quantitative data |
Coherence | H: positive if the understanding was represented in a way that achieved coherence and integration while preserving nuances in the data |
Appropriate discussion | I: positive if the research data and the understandings derived from them are discussed in terms of their contribution to theory, content, method, and/or practical domains, with limitations acknowledged |
Quality classification | Methodological group | |
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Quantitative | Qualitative | |
Good | 9–11 points | 7–9 points |
Medium | 6–8 points | 4–6 points |
Poor | <6 points | <4 points |
Process of Data Extraction, Analysis and Synthesis
Structure for Data Presentation
Results
Identified Papers
Participants (number of studies in review) | Qualitative | Quantitative |
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PwMS (18) | Dyck (1995) M Irvine, Davidson, Hoy, and Lowe-Strong (2009) G Galushko et al. (2014) G Koch, Kralik, and Eastwood (2002) G Kosmala-Anderson and Wallace (2013) G Kralik, Koch, and Eastwood (2003) G Malcomson, Lowe-Strong, and Dunwoody (2008) G McClurg, Beattie, Lowe-Strong, and Hagen (2012) G Mozo-Dutton, Simpson, and Boot (2012) G Olsson, Lexell, and Söderberg (2005) M Olsson, Lexell, and Söderberg (2008) G Olsson, Skär, and Söderberg (2011) G Payne and McPherson (2010) G Ploughman et al. (2012) G Reynolds and Prior (2003) G | Green and Todd (2008) G McCabe, McDonald, Deeks, Vowels, and Cobain (1996) G Özdemir and Aşiret (2011) M |
Partners (5) | Bogosian, Moss-Morris, Yardley, and Dennison (2009) G Cheung and Hocking (2004) G Courts et al. (2005) G DesRosier, Catanzaro, and Piller (1992) M Mutch (2010) G | |
Children of pwMS (4) | Bogosian, Moss-Morris, Bishop, and Hadwin (2011) G Jonzon and Goodwin (2012) G Turpin, Leech, and Hackenberg (2008) M | Pakenham and Cox (2012) G |
Relatives (2) | Bowen, MacLehose, and Beaumont (2011) G Hughes, Locock, and Ziebland (2013) G | |
Couple experiences (4) | Boeije, Duijnstee, and Grypdonck (2003) G Boland, Levack, Hudson, and Bell (2012) G Esmail, Munro, and Gibson (2007) M Esmail, Huang, Lee, and Maruska (2010) M | |
PwMS and relatives (4) | Grytten and Måseide (2006) M Power (1985) M | Hakim et al. (2000) M |
Method (number of studies in review)a
| Characteristics of method | Additional comment |
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Inductive thematic analysis (10) | An umbrella term covering methods that aim to identify and describe patterns (themes) across a dataset through a process of data familiarisation, data coding, theme development and theme revision | The research does not have to be connected to a particular theoretical framework or epistemological position—it could be realist or constructivist |
Constant comparative analysis (5) | The first interview is coded and then all subsequent interviews are compared to that and to each other. Comparisons continue as codes combine to form larger categories. Data is “fragmented” and then “connected” so that the individual and then the whole is seen | Connected to Grounded Theory (see below) but distinct as no theory is developed |
Interpretative phenomenological analysis (IPA) (5) | IPA involves in-depth line-by-line analysis of individual interview transcripts, looking at the language used in order to understand the perspective of the individual. Each interview is analysed separately before links or points of difference are found across cases | Goal of IPA research is to understand the “lived experience” of a particular phenomenon. Developed by Smith, Flowers and Larkin |
Hermeneutic phenomenology (4) | Many variations in method exist all with the aim of explaining and understanding the meaning of human experience, primarily through interpretation of narratives. This may consist of three phases: naive reading, structural analysis, comprehensive understanding of the whole text (e.g., Olsson et al., 2005) | Connected with philosophers such as Husserl, Ricoeur and Heidegger |
Other (3) | There also exist other lesser known methods of qualitative analysis e.g., Payne and McPherson (2010) use Interpretive Description developed by Thorne. An approach from Nursing, it is characterised by immediate and progressive interview analysis throughout the study | |
Grounded theory (2) | A constant comparative method is used to analyse data from interviews in order to develop a theory. Researchers keep interviewing until “data saturation” is reached, i.e. when unique themes no longer appear | Goal of such research is to develop a plausible and useful theory |
Number | Author (year) | Aim | Method and sample size | Analysis | Themes reported | Quality rating |
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1 | Boeije et al. (2003) | Explore commitment and caregiving in couples in total care phase | Semi-structured interview 17 couples | Constant comparative analysis | 1. Five themes a. The first stages: becoming more experienced in caregiving b. The total care phase c. Inevitability of caregiving d. A shared disadvantage e. Commitment to prevent admission 2. Living with MS involved gradual change, and was a learning process for both partners | 7 |
2 | Bogosian et al. (2009) | Explore partner experiences of living with early stages of MS | Semi-structured interview (phone) 15 spouses | Inductive thematic analysis | Seven themes a. Initial reactions to diagnosis b. Loss of control c. Constant worry d. Lifestyle changes e. Social isolation f. Relationship changes g. Attempts to adjust | 8 |
3 | Bogosian et al. (2011) | Explore how adolescents adjust to parental MS | Semi-structured interview 15 children | Inductive thematic analysis | Two themes a. Barriers and enhancements to adjustment b. Impact on everyday life | 7 |
4 | Boland et al. (2012) | In-depth exploration of couple coping in MS | Semi-structured interview 7 couples | Interpretative phenomenological analysis | Four themes a. Coping together: “Peaks and troughs” b. Coping over the long haul c. Faith in self d. Faith in each other | 8 |
5 | Bowen et al. (2011) | Explore experiences of family members following admission of relative with advanced MS | Semi-structured interview 25 relatives | Grounded theory | Four themes a. Information, communication and understanding b. Family relationships, roles and responsibilities c. Emotion, coping and support d. Life outlook and reflection | 8 |
6 | Cheung and Hocking (2004) | Explore spousal carers’ experiences of caring for chronically ill partners | Unstructured interview 10 spouses | Hermeneutic phenomenology | One of two major themes (the other is reported in a separate article): Caring as worrying. This has two key subthemes a. Worrying about their partner and their relationship b. Worrying about the future | 7 |
7 | Courts et al. (2005) | Investigate lived experience of spouses of pwMS | Focus group 12 spouses | Not stated | Four themes a. Caregiver roles b. Need for resources c. Relational changes d. Barriers | 7 |
8 | DesRosier et al. (1992) | Describe experience and coping of wives with housebound husbands | 2 focus groups 9 wives | Constant comparative analysis | 1. Two themes a. Coping b. The need for Space 2. Women experienced significant personal hardship | 6 |
9 | Dyck (1995) | Explore workplace experiences of women with MS | Semi-structured interview 23 women | Not stated | 1. Three themes a. Changing lifeworlds b. Changing space c. Restructuring of home and neighbourhood 2. The changing experience of place (issues of access and meaning) | 5 |
10 | Edmonds et al. (2007a) | Explore experiences of people severely affected by MS | Semi-structured interview Data relates to 32 pwMS from 23 pwMS and 17 carers | Constant comparative analysis | Three themes a. Physical abilities b. Independence c. Relationships | 8 |
11 | Edmonds et al. (2007b) | Explore experiences of people severely affected by MS | Semi-structured interview Data relates to 32 pwMS | Constant comparative analysis | Three themes related to service provision a. Fighting for everything b. Continuity and co-ordination of care c. Information | 8 |
12 | Esmail et al. (2007) | Understand impact of female MS on couples’ sexual relationships | Semi-structured interview 6 couples | Inductive thematic analysis | 1. Six themes from women with MS a. Communication b. Patterns of denial and acceptance c. Impact on sex d. Partner’s needs e. Role changes f. Love and support 2. Five themes from male partners a. Communication b. Impact on sex c. Role change d. Intimacy and closeness e. Partner’s emotional response to MS | 6 |
13 | Esmail et al. (2010) | Understand impact of male MS on couples’ sexual relationships | Semi-structured interview 4 couples | Inductive thematic analysis | Four themes a. Communication is important b. MS affected sexual relationship c. Role changes d. Acceptance of MS supports the relationship | 6 |
14 | Galushko et al. (2014) | Explore unmet needs in those severely affected by MS | Semi-structured interview 15 pwMS | Constant comparison analysis | Four themes a. Support of family and friends b. Health care services c. Managing everyday life d. Maintaining biographical continuity | 8 |
15 | Grytten and Måseide (2006) | Explore stigma experienced by pwMS in social relationships | Semi-structured interview 8 pwMS 6 relatives | Grounded theory | 1. Two social processes were identified a. Ignoring illness b. Overemphasising illness 2. These processes impacted social networks and coping | 6 |
16 | Hughes et al. (2013) | Explore how people identify with a “carer” role | Narrative interviews 27 partners 2 siblings 5 children 4 parents 2 friends | Inductive thematic analysis | 1. Six categories of caring tasks were identified a. Emotional support b. Personal care c. Physical care d. Household tasks e. Advocacy f. Activism 2. Becoming a “carer” was influenced by increasing care needs. The label of “carer” could be embraced, enforced, absorbed or rejected by family and friends | 8 |
17 | Irvine et al. (2009) | Explore living with and adjusting to MS | Focus group 8 pwMS | Interpretative phenomenological analysis | Six themes a. Reaction to/impact of being diagnosed b. Social activity c. Role in society and self-worth d. Relationships and dependency e. Attitudes/reactions of others f. Perceptions of adjustment and changes in self-concept, identity and outlook | 7 |
18 | Jonzon and Goodwin (2012) | Understand play experiences of daughters who were caregivers to mothers with MS | Semi-structured interview 4 daughters 3 in focus group | Interpretative phenomenological analysis | 1. Three themes a. Being a good daughter b. Blurred relationship boundaries c. Encumbered play 2. Daughters’ leisure time was impacted by their mother’s MS. They worried about their mothers and becoming a caregiver meant their own needs could be neglected | 8 |
19 | Koch et al. (2002) | Explore how women experience and construct sexuality | 5 focus group sessions 12 pwMS 9 semi-structured interviews | Other | Three themes a. Appearance (looking and feeling good themselves) b. Acknowledgement (feeling valued and acknowledged by others) c. Communication (with partners regarding sexual changes) | 7 |
20 | Kosmala-Anderson and Wallace (2013) | Explore childbearing experiences of UK women with MS | Semi-structured interview 9 pwMS | Inductive thematic analysis | Three themes a. Concerns about MS and pregnancy b. Lack of information about MS and pregnancy c. Others’ opinions about childbirth choices | 8 |
21 | Kralik et al. (2003) | Further exploration of transition in chronic illness and the relationship between self and body | 5 focus group sessions 12 pwMS 9 semi-structured interview | Other | 1. Two themes a. Extraordinariness b. Ordinariness 2. Exemplars Julie and Lisa illustrate how women’s lives are shaped by illness-related identity shifts. A changed body affects the sense of self, roles, and relationships | 8 |
22 | Malcomson et al. (2008) | Explore experiences of people who feel able to cope with MS | 2 focus groups 13 pwMS | Inductive thematic analysis | Seven themes a. Something is wrong b. Getting a name c. Getting help d. Consequences in lifestyle e. Getting on with day-to-day life f. Advice to others with MS g. Advice to professionals | 7 |
23 | McClurg et al. (2012) | Examine effect of constipation on the quality of life of pwMS | Semi-structured interview 12 pwMS | Inductive thematic analysis | 1. Themes a. Loss of normal identity b. Daily impact c. Reluctance of patients and healthcare professionals to discuss bowel problems d. Loss of control 2. A spoiled normal identity and decreased self-esteem due to reactions of others and associated aesthetic issues of bowel dysfunction was found | 9 |
24 | Mozo-Dutton et al. (2012) | In-depth exploration of personal perceptions of self and perceived impact of MS on self | Semi-structured interviews 12 pwMS | Interpretative phenomenological analysis | Three themes a. ‘My body didn’t belong to me’: The changing relationship to the body b. ‘I miss the way I feel about myself’: The changing relationship to self c. ‘Let’s just try and live with it’: Incorporating MS within self | 8 |
25 | Mutch (2010) | Understand experiences of partners caring for disabled spouse, and explore coping strategies | Semi-structured interview 8 partners | Not stated | 1. Five themes a. Worry b. Planning c. Frustration d. Commitment to marriage e. Coping strategies | 8 |
26 | Olsson et al. (2005) | Explore what fatigue means to women with MS | Semi-structured interview 10 pwMS | Hermeneutic phenomenology | 1. Two themes a. Experiencing the body as a barrier b. Experiencing a different absence 2. Subthemes cover issues such as being unable to participate and saving strength | 6 |
27 | Olsson et al. (2008) | Describe meaning of women’s experiences of living with MS | Semi-structured interview 10 pwMS | Hermeneutic phenomenology | 1. Two themes a. An unrecognizable body b. Trying to maintain power 2. Subthemes cover issues such as dependence, feeling seen differently, feeling ignored and wanting to fight as long as possible | 8 |
28 | Olsson et al. (2011) | Explore meanings of being received and met by others by women with MS | Semi-structured interview 15 pwMS | Hermeneutic phenomenology | 1. Two themes a. Experiencing oneself as a valuable person b. Experiencing oneself as diminished 2. Women sometimes felt needed and appreciated. They also felt they were seen differently, pitied, misunderstood and a burden | 8 |
29 | Payne and McPherson (2010) | Explore the experience of motherhood in MS | Semi-structured interview 9 pwMS | Other | Six themes a. Public private experience b. Keeping baby safe c. Enlisting support d. Conserving energy e. Being the ideal mother f. Backgrounding MS | 7 |
30 | Ploughman et al. (2012) | Describe experience of ageing with MS | Semi-structured interview 18 pwMS | Inductive thematic analysis | Three themes a. MS recognition process b. The MS experience c. Moving toward self-management | 9 |
31 | Power (1985) | Identify key family variables influencing adjustment of pwMS | Semi-structured interview 49 families 80% of families seen twice | Not stated | 1. Families were classified as positively adjusted (n = 23) or maladjusted (n = 26) 2. Many factors contributed to positive adjustment including sharing responsibilities and accepting any help offered 3. In the ‘maladjusted’ families, MS was seen as “an everpresent source of trouble,” and good communication and understanding were lacking | 4 |
32 | Reynolds and Prior (2003) | Explore women’s strategies for negotiating quality of life in MS | Semi-structured interview 27 pwMS | Interpretative phenomenological analysis | Six themes a. Managing illness and limiting its impact b. Maintaining and extending meaningful roles c. Maintaining mutual relationships d. Clarifying personal beliefs and aspirations e. Dealing with social barriers f. Consciously valuing and promoting the positive | 8 |
33 | Turpin et al. (2008) | Explore experience and coping strategies of children with an MS parent | Semi-structured interview 8 children | Inductive thematic analysis | Three themes a. Changing roles and responsibilities b. Emotional impact c. Things that helped | 7 |
Number | Author (year) | Aim | Design and sample size | Analysis | Key findings | Quality rating |
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1 | Green and Todd (2008) | Examine social and economic impact of MS | Questionnaire 920 pwMS | Descriptive statistics Pearson Chi square Thematic analysis | 1. Three-quarters of the respondents felt an impact in at least some of the 8 questionnaire domains. In particular, 49.3% reported an impact on their children, 55.2% on intimate relationships, and 80% on social life and their own employment 2. The impact of MS on all domains increases as disability progresses 3. Two qualitative themes emerged from the open-ended questions: restricting choices, and limiting independence | 9 |
2 | Hakim et al. (2000) | Assess social impact of MS and patients’ abilities to fulfill roles | Survey 305 pwMS 223 relatives | Descriptive statistics Mann–Whitney U | 1. MS disease severity was associated with employment status and levels of social activity 2. 37% of the sample of pwMS reported a decline in living standards 3. 36% of carers’ reported their careers were affected | 6 |
3 | McCabe et al. (1996) | Assess perceived impact of MS on sexual functioning, social and intimate relationships | Questionnaire 111 pwMS | Descriptive statistics ANOVAs Pearson’s r
| 1. Two-thirds indicated that sexual interactions were less frequent 2. Illness duration and level of disability were not predictive of relationship quality, although some participants did report relational changes | 8 |
4 | Özdemir and Aşiret (2011) | Identification of economic, family, social, and employment issues of pwMS in Turkey | Questionnaire 101 pwMS | Descriptive statistics Chi square test and independent samples t-test | 1. 71.3% of the sample reported decreased social activity 2. 49.5% experienced household problems (e.g. communication issues, overprotective family) 3. More MS symptoms were associated with greater difficulties at home, in employment and socially | 7 |
5 | Pakenham and Cox (2012) | Explore caregiving in children of a parent with MS | Questionnaires 88 families (85 parents with MS 55 partners 130 children) | Descriptive statistics Factor analysis of Youth Activities of Caregiving Scale (YACS) Hierarchical regression analyses | 1. Higher levels of instrumental and social-emotional care tasks were associated with poor adjustment, whereas higher levels of personal-intimate were associated with better adjustment. Domestic-household tasks were unrelated to adjustment 2. Increased levels of caregiving were associated with decreased life satisfaction, increased somatisation and increased total difficulties for children of pwMS | 9 |