Dietary responses to a multiple sclerosis diagnosis: a qualitative study

Russell, Rebecca; Black, Lucinda J; Sherriff, Jill; Begley, Andrea

doi:10.1038/s41430-018-0252-5

Cited by 26 publications

(56 citation statements)

References 40 publications

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“…10,17,32,33,36-39 Several studies referred to people's experiences of receiving insufficient information and support from health-care professionals at this time. 17,33,35,37,[39][40][41] People described the provision of generic advice from health-care providers, rather than personally tailored and specific advice. 11,31,37,40,[42][43][44][45][46] In two studies, women described receiving inadequate and conflicting information related to having children -from supportive to discouraging.…”

Section: A Quest For Knowledge Expertise and Understandingmentioning

confidence: 99%

“…17,33,35,37,[39][40][41] People described the provision of generic advice from health-care providers, rather than personally tailored and specific advice. 11,31,37,40,[42][43][44][45][46] In two studies, women described receiving inadequate and conflicting information related to having children -from supportive to discouraging. 11,12 People with MS often had to navigate their own preconceived ideas about MS and what their future living with MS might look like; for example, they may have inferred from the frequent image of someone in a wheelchair used in popular representations of MS that this would be the outcome for all with this diagnosis.…”

Section: A Quest For Knowledge Expertise and Understandingmentioning

confidence: 99%

“…In response, some chose to manage anxiety about the future by only researching those symptoms that were of current concern to them. 38 People with MS described varied alternative paths of self-directed research using resources such as the internet, 11,20,33,37,[54][55][56][57] books, 11,20,33,37,56 peer group support networks, 11,20,33 media, 20,54 friends 54,55 and MS associations. 37,55,57…”

Section: A Quest For Knowledge Expertise and Understandingmentioning

confidence: 99%

See 2 more Smart Citations

‘It struck at the heart of who I thought I was’: A meta‐synthesis of the qualitative literature examining the experiences of people with multiple sclerosis

Desborough

Brunoro

Parkinson

et al. 2020

Health Expectations

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Background People with multiple sclerosis (MS) have varied experiences and approaches to self‐management. This review aimed to explore the experiences of people with MS, and consider the implications of these experiences for clinical practice and research. Methods A meta‐synthesis of the qualitative literature examining experiences of people with MS was conducted using systematic searches of ProQuest, PubMed, CINAHL and PsycINFO. We incorporated feedback from team members with MS as expert patient knowledge‐users to capture the complex subjectivities of persons with lived experience responding to research on lived experience of the same disease. Results Of 1680 unique articles, 77 met the inclusion criteria. We identified five experiential themes: (a) the quest for knowledge, expertise and understanding, (b) uncertain trajectories (c) loss of valued roles and activities, and the threat of a changing identity, (d) managing fatigue and its impacts on life and relationships, and (f) adapting to life with MS. These themes were distributed across three domains related to disease (symptoms; diagnosis; progression and relapse) and two contexts (the health‐care sector; and work, social and family life). Conclusion The majority of people in the studies included in this review expressed a determination to adapt to MS, indicating a strong motivation for people with MS and clinicians to collaborate in the quest for knowledge. Clinicians caring for people with MS need to consider the experiential and social outcomes of this disease such as fatigue and the preservation of valued social roles, and incorporate this into case management and clinical planning.

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Section: A Quest For Knowledge Expertise and Understandingmentioning

confidence: 99%

Section: A Quest For Knowledge Expertise and Understandingmentioning

confidence: 99%

Section: A Quest For Knowledge Expertise and Understandingmentioning

confidence: 99%

See 1 more Smart Citation

‘It struck at the heart of who I thought I was’: A meta‐synthesis of the qualitative literature examining the experiences of people with multiple sclerosis

Desborough

Brunoro

Parkinson

et al. 2020

Health Expectations

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“…PwMS are eager to know what diet(s) will help their disease [28,29] but there is insufficient evidence to support the use of the WahlsElim or any other diet for the treatment of MS including Swank [30], McDougall [31], Mediterranean [32,33], ketogenic [34] or energy restricted/fasting [35,36,37]. Well-designed, randomized controlled trials are needed [38,39] to identify diets that improve disease outcomes.…”

Section: Introductionmentioning

confidence: 99%

Nutrient Composition Comparison between a Modified Paleolithic Diet for Multiple Sclerosis and the Recommended Healthy U.S.-Style Eating Pattern

et al. 2019

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Multiple sclerosis (MS) is a demyelinating disease that attacks the central nervous system. Evidence-based dietary guidelines do not exist for MS; the default advice is to follow the Dietary Guidelines for Americans (DGA). A modified Paleolithic Wahls Elimination (WahlsElim) diet promoted for MS excludes grains and dairy and encourages 9+ cups fruits and vegetables (F/V) and saturated fat for cooking. This study evaluated the nutritional adequacy of seven-day menus and modeled them with varying amounts of F/V for comparison with the DGA Healthy US-Style Eating Pattern (HEP) for ages 31–50 years. WahlsElim menus had low added sugar and glycemic index. Nutritional adequacy of the menus and modeled versions were similar to HEP for 17 vitamins and minerals (mean adequacy ratio ≥92%). Nutrient shortfalls for the modeled diet with 60% F/V were identical to HEP for vitamin D, iron (females), magnesium (marginally males), choline and potassium; this modeled diet was also low in dietary fiber and calcium but met vitamin E requirements while HEP did not. WahlsElim-prescribed supplements corrected vitamin D and magnesium shortfalls; careful selection of foods are needed to meet requirements of other shortfall nutrients and reduce saturated fat and sodium. Doctors should monitor nutritional status, supplement doses, and possible contraindications to high vitamin K intake in individuals following the WahlsElim diet.

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“…All interviews were conducted over telephone by author 1, a dietitian (CS; female) who has qualitative research experience [ 60 ], with guidance from AB, an established qualitative researcher [ 61 , 62 ]. Participants in the interview completed a consent form and a demographics questionnaire on the web.…”

Section: Methodsmentioning

confidence: 99%

Design and Development of a Digital Weight Management Intervention (ToDAy): Qualitative Study

Shoneye¹,

Mullan²,

Begley³

et al. 2020

JMIR Mhealth Uhealth

Self Cite

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Background The Tailored Diet and Activity (ToDAy) study aims to build on the campaign by adding a digital intervention with the potential to provide wide-reaching, cost-effective weight management support. Objective The ToDAy study aims to build a tailored intervention using mobile technology to improve diet and physical activity behaviours in adults with overweight and obesity. The main objectives were to identify behavior change techniques for diet and physical activity (PA) change for weight loss and explore preferences for digital intervention features that would be effective in changing diet and PA behaviors. Methods This qualitative study uses the principles of a person-based approach to intervention development; the behavioral intervention technology framework; and the capability, opportunity, motivation, and behavior (COM-B) framework. Focus groups and telephone interviews were conducted with 56 adults in Western Australia. Open-ended questions and example intervention features were used to explore the usability and acceptability of the self-monitoring tools, knowledge about effective weight-loss strategies, and acceptability of tailored feedback. Findings from the focus groups and interviews were analyzed using thematic analysis. Results Qualitative findings revealed an awareness of key public health messages but a lack of confidence in how to perform these behaviors to help manage their weight. A total of 4 major themes were identified and mapped to the domains of the COM-B framework: (1) misinformation, (2) environmental support, (3) social norms, and (4) confidence. Conclusions This study explores users’ capability, opportunity, and motivation to perform the target behaviors for weight loss. The findings suggested that a digital weight management intervention using a mobile food record and activity trackers to inform tailored feedback may be acceptable and feasible. Participants expressed a preference for simple expert advice, digital self-monitoring tools, and visual feedback. International Registered Report Identifier (IRRID) RR2-10.2196/12782

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Dietary responses to a multiple sclerosis diagnosis: a qualitative study

Cited by 26 publications

References 40 publications

‘It struck at the heart of who I thought I was’: A meta‐synthesis of the qualitative literature examining the experiences of people with multiple sclerosis

‘It struck at the heart of who I thought I was’: A meta‐synthesis of the qualitative literature examining the experiences of people with multiple sclerosis

Nutrient Composition Comparison between a Modified Paleolithic Diet for Multiple Sclerosis and the Recommended Healthy U.S.-Style Eating Pattern

Design and Development of a Digital Weight Management Intervention (ToDAy): Qualitative Study

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