scholarly journals Experiences of and attitudes to lifestyle modification for the management of multiple sclerosis: A qualitative analysis of free‐text survey data

2021 ◽  
Author(s):  
Sandra L. Neate ◽  
Angela Donald ◽  
George A. Jelinek ◽  
Nupur Nag
Author(s):  
Emma Kirby ◽  
Giselle Newton ◽  
Lukas Hofstätter ◽  
Sarah Judd-Lam ◽  
Iva Strnadová ◽  
...  

The health and social ‘after-effects’ of caring are well established, yet the way carers experience pathways out of caring remains under-researched. In this article, we analyse qualitative free-text responses (n = 1,746) from a national survey of Australian carers to explore current and former carers’ concerns, opportunities and preferences around care endings. Our thematic analysis derived three key findings: (1) anticipation and fears for the care recipient; (2) prospects for life after caring; and (3) responsibility, recognition and loss. We engage with scholarship on the moralities of caring to discuss carers’ precarious relational and social positions, and their uncertainties around how caring ends.<br /><br />Key messages<br /><ul><li>Carers worry about how care recipients will be looked after in the future in the carer’s absence, especially in situations where the carer is frail or ageing.</li><br /><li>Carers also worry about their own futures and life after caring, including fears about re-entering the workforce, housing and superannuation, as well as issues of loss and loneliness.</li><br /><li>For some carers, the imagined care ending does not ultimately constitute the end of their caring responsibility in practice; for example, many carers continue to provide considerable care for those in supported accommodation.</li><br /><li>Understanding how carers experience and make sense of care endings is important for improving support for current and former carers.</li></ul>


Author(s):  
Sandra L. Neate ◽  
Keryn L. Taylor ◽  
Nupur Nag ◽  
George A. Jelinek ◽  
Steve Simpson-Yap ◽  
...  

People with multiple sclerosis (PwMS) often experience uncertainty and fear about their futures. Partners of PwMS may share their concerns and experience fears about their own futures, limitations on their lives, ability to work, and becoming a carer. For PwMS, modification of lifestyle-related risk factors has been associated with improved health outcomes. For PwMS who attended residential lifestyle modification workshops (RLMW), sustained improved health outcomes have been demonstrated. Whether improved outcomes for PwMS who engage with lifestyle modification translate to improved partner perceptions of the future, is yet to be explored. We explored the perspectives of partners of PwMS who had attended a RLMW and the impact that the person with MS’s illness and their engagement with lifestyle modification had on their partners’ views of the future. Analysis of 21 semi-structured interviews used a methodology informed by Heidegger’s Interpretive Phenomenology. Three themes emerged: ‘uncertainty’, ‘planning for the future’ and ‘control, empowerment and confidence’. Subthemes included MS and lifestyle modification being a catalyst for positive change; developing a sense of control and empowerment; and hope, optimism and positivity. Lifestyle modification may provide benefits, not only to PwMS, but also to their partners, and should be considered part of mainstream management of MS.


CJEM ◽  
2017 ◽  
Vol 19 (S1) ◽  
pp. S102-S103
Author(s):  
L. Krebs ◽  
L. Gaudet ◽  
L.B. Chartier ◽  
B.R. Holroyd ◽  
S. Dowling ◽  
...  

Introduction: Recently, campaigns placing considerable emphasis on improving emergency department (ED) care by reducing unnecessary tests, treatments, and/or procedures have been initiated. This study explored how Canadian emergency physicians (EPs) conceptualize unnecessary care in the ED. Methods: An online 60-question survey was distributed to EP-members of the Canadian Association of Emergency Physicians (CAEP) with valid emails. The survey explored respondents awareness/support for initiatives to improve ED care (i.e., reduce unnecessary tests, treatments and/or procedures) and asked respondents to define “unnecessary care” in the ED. Thematic qualitative analysis was performed on these responses to identify key themes and sub-themes and explore variation among EPs definitions of unnecessary care. Results: A total of 324 surveys were completed (response rate: 18%); 300 provided free-text definitions of unnecessary care. Most commonly, unnecessary ED care was defined as: 1) performing tests, treatments, procedures, and/or consults that were not indicated or potentially harmful (n=169) and/or 2) care that should have been provided within a non-emergent context for a non-urgent patient (n=143). Emergency physicians highlighted the role of system-level factors and system failures that result in ED presentations as definitions of unnecessary care (n=69). They also noted a distinction between providing necessary care for a non-urgent patient and performing inappropriate/non-evidenced based care. Finally, a tension emerged in their description of frustration with patient expectations (n=17) and/or non-ED referrals (n=24) for specific tests, treatments, and/or procedures. These frustrations were juxtaposed by participants who asserted that “in a patient-centred care environment, no care is unnecessary” (Participant 50; n=12). Conclusion: Variation in the definition of unnecessary ED care is evident among EPs and illustrates that EPs’ conceptualization of unnecessary care is more nuanced than current campaigns addressing ED care improvements represent. This may contribute to a perceived lack of uptake or support for these initiatives. Further exploring EPs perceptions of these campaigns has the potential to improve EP engagement and influence the language utilized by these programs.


2019 ◽  
Vol 51 (1) ◽  
pp. 67-76 ◽  
Author(s):  
Malachy Bishop ◽  
Robert Fraser ◽  
Jian Li ◽  
Phillip D. Rumrill ◽  
Maura Burns ◽  
...  

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