Descriptive analysis of free-text comments on healthcare priorities and experiences in a national sample of people with multiple sclerosis

Chiu, Chung-Yi; Park, Mirang; Hoffman, Taylor L.; Campbell, Monica; Bishop, Malachy

doi:10.1016/j.msard.2019.06.023

Cited by 11 publications

(19 citation statements)

References 35 publications

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“…Low availability of specialized care led many participants to feel that they had to rely on their family physicians, who possessed little knowledge of MS. This concern has been previously reported in Canada and internationally 15,35,36,47,48 . Many participants felt that a heavy reliance on primary care was detrimental to their health and limited their management and treatment options.…”

Section: Discussionmentioning

confidence: 80%

“…This will allow the health‐care system to respond more appropriately to the needs of persons living with MS 50 , especially, as the rates of MS and other chronic conditions rise in Canada 51 . Specifically, including outcome measures of quality of life, participation and independence to the care protocol of persons with MS may positively influence their satisfaction with care 36 .…”

Section: Discussionmentioning

confidence: 99%

“…The findings also suggest that Ontarians with MS continue to experience unmet needs and dissatisfaction with health-care services, which may be explained by their experiences of accessing health care. Studies examining access to care for people with MS have attributed unmet needs to traditional dimensions of affordability, accommodation and accessibility 5,35,36 . The participants in our study also described these dimensions of access; however, they emphasized the importance of patient-provider interactions in fulfilling their care needs, consistent with research conducted in the UK 15 .…”

Section: Findings In Contextmentioning

confidence: 99%

“…MS50 , especially, as the rates of MS and other chronic conditions rise in Canada51 . Specifically, including outcome measures of quality of life, participation and independence to the care protocol of persons with MS may positively influence their satisfaction with care36 .To mitigate the low availability of MS neurologists, we should aim to equip family physicians with the appropriate MS-related knowledge and skills to take on a larger role in the care of MS patients.Family physicians are well positioned to provide ongoing continuous care that is accessible and available 52 , and they are already commonly relied on by persons with MS53,54 . They could take on shared responsibility with neurologist to care for this patient population, as suggested by Oh et al, by supporting ongoing health maintenance, MS symptom and comorbidity management, and referrals to secondary services55 .…”

mentioning

confidence: 99%

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Is it worth it?: The experiences of persons with multiple sclerosis as they access health care to manage their condition

Pétrin

Donnelly

McColl

et al. 2020

Health Expectations

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Background People with multiple sclerosis (MS) require complex care throughout life. Canadians with MS are high users of health‐care services, yet still report unmet health‐care needs and low satisfaction with services received. Objective This study aimed to investigate the health‐care access experiences of Ontarians with MS as they manage their condition. Design and Participants Interpretive description guided data collection and analysis. Forty‐eight people living across seven communities participated. Thirty‐eight participated in one of five focus groups; the remaining 10 participated in an individual semi‐structured interview. Results Participants described the experience of accessing care as a decisional process, guided by a form of cost‐benefit analysis. The process determined whether seeking conventional health‐care services ‘is worth it’. Most participants felt that the energy and resources required to access the health‐care system outweighed their expected outcomes, based on past experiences. Participants who did not see the benefit of care seeking turned to self‐treatment, use of complementary and alternative services, and engaged in patterns of health‐care avoidance until a crisis arose. Discussion and Conclusion Findings suggest that a renewed effort to promote patient‐centred care and a biopsychosocial approach may improve the health‐care access experiences of persons with MS and reduce service avoidance.

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Section: Discussionmentioning

confidence: 80%

Section: Discussionmentioning

confidence: 99%

Section: Findings In Contextmentioning

confidence: 99%

mentioning

confidence: 99%

See 2 more Smart Citations

Is it worth it?: The experiences of persons with multiple sclerosis as they access health care to manage their condition

Pétrin

Donnelly

McColl

et al. 2020

Health Expectations

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“…Some researchers have focused on needs in specific domains, such as mental health (Marrie et al, 2019) and health care (e.g. Chiu et al, 2017Chiu et al, , 2018Chiu et al, , 2019Kinyanjui et al, 2018), while other needs assessments have had a broader scope, comprehensively exploring community-based, vocational, social, and other support needs (e.g. European MS Platform, 2004;Forbes et al, 2007;Hepworth & Harrison, 2004;Kersten et al, 2000;Koopman et al, 2006;MacLurg et al, 2005).…”

mentioning

confidence: 99%

Information and resources important to the quality of life of people living with multiple sclerosis

Bishop

Rumrill

McDaniels

et al. 2020

The Australian Journal of Rehabilitation Counselling

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Multiple sclerosis (MS) is a chronic, typically progressive immune-mediated disease characterized by inflammation and demyelination in the central nervous system (CNS), and is associated with a wide range of neurological, physical, and psychosocial effects. For people living with MS, access to relevant, timely, and accessible health information and resources may contribute to effective illness management, psychosocial health, and quality of life (QOL). In this study, we sought to increase understanding of the specific types of information most wanted by people with MS, as well as the sources and effects of this information. Specifically, we surveyed 748 adults with MS about (a) the sources from which they obtain information about MS, (b) the type of information that is most important in terms of improving their QOL, and (c) specific topics about which they would like to have more information, services, or resources. Content analysis of the qualitative results demonstrated the diversity of information sources accessed by people with MS and the importance of providing information through different formats and media. The participants prioritized information related to new MS medications and treatments, physical and mental health and wellness, and local opportunities for support. Implications for practicing rehabilitation counselors are discussed.

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Occupational therapy in multiple sclerosis

Kos

Eijssen

Bekkering

et al. 2023

Cochrane Database of Systematic Reviews

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Descriptive analysis of free-text comments on healthcare priorities and experiences in a national sample of people with multiple sclerosis

Cited by 11 publications

References 35 publications

Is it worth it?: The experiences of persons with multiple sclerosis as they access health care to manage their condition

Is it worth it?: The experiences of persons with multiple sclerosis as they access health care to manage their condition

Information and resources important to the quality of life of people living with multiple sclerosis

Occupational therapy in multiple sclerosis

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