Healthcare access experiences of persons with MS explored through the Candidacy Framework

Pétrin, Julie; Finlayson, Marcia; Donnelly, Catherine; McColl, Mary Ann

doi:10.1111/hsc.13320

Cited by 10 publications

(49 citation statements)

References 37 publications

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“…Occupational therapists, mental health providers and physiotherapists were the top HCPs whom participants needed to see but could not access. Encountering providers who lacked knowledge about MS and understood their situations was also a significant concern ( 19 ), echoed in a related qualitative study ( 20 ) and in a second qualitative study among moderately to severely affected individuals with MS in Germany ( 21 ). A recent survey of 1,190 persons, 75% of whom had MS, identified the influence of multidisciplinary teams on health outcomes and experiences as one of the top five research priorities ( 22 ).…”

Section: Discussionmentioning

confidence: 99%

Models of Care in Multiple Sclerosis: A Survey of Canadian Health Providers

et al. 2022

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ObjectiveLittle work has evaluated integrated models of care in multiple sclerosis (MS) and the composition of MS care teams across Canada is largely unknown. We aimed to gather information regarding existing models of MS care across Canada, and to assess the perceptions of health care providers (HCPs) regarding the models of care required to fully meet the needs of the person with MS.MethodsWe conducted an anonymous online survey targeting Canadian HCPs working in MS Clinics, and neurologists delivering MS care whether or not they were based in an MS Clinic. We queried the types of HCPs delivering care within formal MS Clinics, wait times for HCPs, the perceived importance of different types of HCPs for good quality care, assessments conducted, and whether clinic databases were used. We summarized survey responses using descriptive statistics.ResultsOf the 716 HCPs to whom the survey was distributed, 100 (13.9%) people responded. Of the 100 respondents, 85 (85%) indicated that their clinical practice included people with MS and responded to specific questions about clinical care. The most common types of providers within MS Clinics with integrated models of care were neurologists and MS nurses. Of 23 responding MS Clinics, 10 (43.5%) indicated that there were not enough neurologists, and 16 (69.6%) indicated that there were not enough non-neurologist HCPs to provide adequate care. More than 50% of clinics reported wait times exceeding 3 months for physiatrists, physiotherapists, psychiatrists, psychologists, neuropsychologists and urologists; in some clinics wait times for these providers exceeded 1 year. Multiple disciplines were identified as important or very important for delivering good quality MS care. Over 90% of respondents thought it was important for neurologists, nurse practitioners, MS nurses and psychiatrists to be co-located within MS Clinics.ConclusionCanadian HCPs viewed the ideal MS service as being multidisciplinary in nature and ideally integrated. Efforts are needed to improve timely access to specialized MS care in Canada, and to evaluate how outcomes are influenced by access to care.

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Section: Discussionmentioning

confidence: 99%

Models of Care in Multiple Sclerosis: A Survey of Canadian Health Providers

et al. 2022

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“…Service users, though often desperate for care, were faced with a much more restricted range of offers of care and lack of clarity about how adjudications for their eligibility were made. The apparently low level of rejections of offers by service users, in contrast with some other studies ( Pétrin et al, 2021 ) is perhaps suggestive of a problem of under-supply of care rather than enthusiastic endorsement of the offers that were made or an acceptance that the offers aligned with their needs. Our findings also offer important insights into how the adjudications were made.…”

Section: Discussionmentioning

confidence: 54%

“…Overall, these findings add to understanding of the dynamic and recursive nature of candidacy ( Pétrin et al, 2021 ), among other things further challenging a view of candidacy as involving a linear series of “stages” – the seven features are each relevant in producing candidacy, but not necessarily in easily predictable ways. For policy and practice, our findings suggest that the pandemic exposed and amplified multiple challenges and structural inequalities in relation to mental healthcare provision and organisation of services that pre-dated COVID-19.…”

Section: Discussionmentioning

confidence: 86%

Qualitative study of candidacy and access to secondary mental health services during the COVID-19 pandemic

Liberati

Richards

Parker

et al. 2022

Social Science & Medicine

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Candidacy, a construct describing how people's eligibility for care is negotiated between themselves and services, has received limited attention in the context of mental health care. In addition, candidacy research has only rarely studied the views of carers and health professionals. In this article, we use concepts relating to candidacy to enable a theoretically informed examination of experiences of access to secondary mental health services during the first wave of the COVID-19 pandemic in England. We report a qualitative study of the views and experiences of service users, carers, and healthcare professionals. Analysis of 65 in-depth interviews was based on the constant comparative method. We found that wide-ranging service changes designed to address the imperatives of the pandemic were highly consequential for people's candidacy. Macro-level changes, including increased emphasis on crisis and risk management and adapted risk assessment systems, produced effects that went far beyond restrictions in the availability of services: they profoundly re-structured service users' identification of their own candidacy, including perceptions of what counted as a problem worthy of attention and whether they as individuals needed, deserved, and were entitled to care. Services became less permeable, such that finding a point of entry to those services that remained open, required more work of service users and carers. Healthcare professionals were routinely confronted by complex decisions and ethical dilemmas about provision of care, and their implicit judgements about access may have important implications for equity. Many of the challenges of access exposed by the pandemic related to pre-existing resource deficits and institutional weaknesses in care for people living with mental health difficulties. Overall, these findings affirm the value of the construct of candidacy for explaining access to mental healthcare, but also enable deepened understanding of the specific features of candidacy, offering enduring learning and implications for policy and practice.

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“…It is possible that there would have been greater change seen if participants had been primarily cared for by family physicians; 12.3% of 324 respondents in a recent survey of Canadians living with MS indicated that they received the majority of their care from general practitioners, 4% received no care for their MS, while 8% received their MS care primarily from walk-in clinics, after-hours clinics and emergencies. [27]…”

Section: Discussionmentioning

confidence: 99%

“…[13][14][15][16][17][18][19][20][21][22][23][24][25][26] This may be evolving in Canada, as suggested by Petrin et al in 2021, where survey respondents expressed high levels of satisfaction with their healthcare providers around respectful communication and in shared decision making. [27] PwMS require decades of specialized neurologic care, with average life expectancy of one large Canadian cohort estimated to be approximately six years less than the general population. [28] A cross-sectional questionnaire study of 1,205 PwMS identi ed unmet needs for PwMS as changing and evolving as their disability progresses.…”

Section: Introductionmentioning

confidence: 99%

The Effect of Nurse Practitioner (NP-led) Care on Health-Related Quality of Life in People with Multiple Sclerosis - A Randomized Trial

Smyth

Watson

Hamarneh

et al. 2022

Preprint

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Background Care for People with Multiple Sclerosis (PwMS) is increasingly complex, requiring innovations in care. Canada has high rates of MS; it is challenging for general neurologists to optimally care for PwMS with busy office practices. The aim of this study was to evaluate the effects of add-on Nurse Practitioner (NP)-led care for PwMS on depression and anxiety (Hospital Anxiety and Depression Scale, HADS), compared to usual care (community neurologist, family physician). Methods PwMS followed by community neurologists were randomized to add-on NP-led or Usual care for 6 months. Primary outcome was the change in HADS at 3 months. Secondary outcomes were HADS (6 months), EQ5D, MSIF, CAREQOL-MS, at 3 and 6 months, and Consultant Satisfaction Survey (6 months). Results We recruited 248 participants; 228 completed the trial (NP-led care arm n = 120, Usual care arm n = 108). There were no significant baseline differences between groups. Study subjects were highly educated (71.05%), working full-time (41.23%), living independently (68.86%), with mean age of 47.32 (11.09), mean EDSS 2.53 (SD 2.06), mean duration since MS diagnosis 12.18 years (SD 8.82) and 85% had relapsing remitting MS. Mean change in HADS depression (3 months) was: -0.41 (SD 2.81) NP-led care group vs 1.11 (2.98) Usual care group p = 0.001, sustained at 6 months; for anxiety, -0.32 (2.73) NP-led care group vs 0.42 (2.82) Usual care group, p = 0.059. Other secondary outcomes were not significantly different. There was no difference in satisfaction of care in the NP-led care arm (63.83 (5.63)) vs Usual care (62.82 (5.45)), p = 0.194). Conclusion Add-on NP-led care improved depression compared to usual neurologist care and 3 and 6 months in PwMS, and there was no difference in satisfaction with care. Further research is needed to explore how NPs could enrich care provided for PwMS in healthcare settings. Trial registration: retrospectively registered on clinicaltrials.gov (ClinicalTrials.gov Identifier: NCT04388592, 14/05/2020)

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Healthcare access experiences of persons with MS explored through the Candidacy Framework

Cited by 10 publications

References 37 publications

Models of Care in Multiple Sclerosis: A Survey of Canadian Health Providers

Models of Care in Multiple Sclerosis: A Survey of Canadian Health Providers

Qualitative study of candidacy and access to secondary mental health services during the COVID-19 pandemic

The Effect of Nurse Practitioner (NP-led) Care on Health-Related Quality of Life in People with Multiple Sclerosis - A Randomized Trial

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