Development of Measure Yourself Concerns and Wellbeing for informal caregivers of people with cancer—a multicentred study

Jolliffe, Rachel; Collaço, Nicole; Seers, Helen; Farrell, C.; Sawkins, Michael J.; Polley, Marie

doi:10.1007/s00520-018-4422-8

Cited by 7 publications

(8 citation statements)

References 39 publications

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“…And I wish I didn't need to. #26 This perceived need to supervise health care has been documented in previous studies that suggest that the perception of suboptimal communication with health care providers can contribute to psychological distress in caregivers, who feel responsible for bridging communication or knowledge gaps (Jolliffe et al, 2019).…”

Section: Assuming the Role Of Project Managermentioning

confidence: 97%

Co-afflicted but invisible: A qualitative study of perceptions among informal caregivers in cancer care

et al. 2019

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This article explores the lived experience of informal caregivers in cancer care, focusing on the perceived burden and needs of individuals seeking support from an informal group for next of kin. A total of 28 individuals who were closely related to a patient with cancer participated in focus group interviews. Three themes were identified: setting aside one's own needs, assuming the role of project manager, and losing one's sense of identity. Together they form the framing theme: being co-afflicted. The characteristics of informal caregivers are shown to be similar to those of people with codependency, motivating development of targeted interventions from this perspective.

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Section: Assuming the Role Of Project Managermentioning

confidence: 97%

Co-afflicted but invisible: A qualitative study of perceptions among informal caregivers in cancer care

et al. 2019

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“…MYCaW was developed in 200618 as a simple, non-hierarchical approach to hearing what was concerning a person the most and how this was affecting their well-being. MYCaW concerns were first developed into a systematic framework in 2007,14 based on a sample population of people who were living with cancer and a further framework developed based on carer’s concerns 11. The use of MYCaW has spread to many different sample populations, particularly in the NHS, as it is now accredited for use with supported self-management approaches.…”

Section: Discussionmentioning

confidence: 99%

“…Further qualitative follow-up questions ask if there is anything else important going on in a person’s life and what has been most important about the service they have received. More details on the development, validation and analysis of MYCaW data can be found in previous publications 11–14. MYCaW is now owned and licensed by Meaningful Measures Ltd and has been accredited by the NHS for use in supported self-management.…”

Section: Introductionmentioning

confidence: 99%

Developing a framework of concerns from people living with frailty, for the Measure Yourself Concerns and Wellbeing (MYCaW) person-centred outcome measure

Polley,

Barker,

Collaco

et al. 2024

BMJ Open Qual

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IntroductionMeasure Yourself Concerns and Wellbeing is a validated person-centred outcome measure, piloted as a core monitoring tool to understand what matters to people living with frailty in Gloucestershire. This paper describes the acceptability of MYCaW used in this setting, and the development of a framework for analysing personalised concerns from people living with frailty.MethodsMYCaW was implemented in the Complex Care at Home service and South Cotswold Frailty Service from November 2020 onwards. MYCaW was completed at the person’s first meeting with a community matron and then 3 months later. Nineteen staff completed an anonymous survey to provide feedback on the acceptability of the tool. A framework of concerns bespoke to people living with frailty was created via iterative rounds of independent coding of 989 concerns from 526 people. The inter-rater reliability of the framework was determined by using the Cronbach alpha test.ResultsMYCaW was simple to use and helped health professionals’ discussions to be patient focused. A pictorial scale accompanying the Numerical Rating Scale was developed and tested to help people engage with scoring their concerns and well-being more easily. A framework of concerns from people living with frailty was produced with five main supercategories: Mental and Emotional Concerns; Physical Concerns; Healthcare and Service Provision Concerns, Concerns with General Health and Well-being and Practical Concerns. Inter-rater reliability was kappa=0.905.ConclusionsMYCaW was acceptable as a core monitoring tool for people living with frailty and enabled a systematic approach to opening ‘What Matters to Me’ conversations. The personalised data generated valuable insights into how the frailty services positively impacted the outcomes for people living with frailty. The coding framework demonstrated a wide range of concerns—many linked to inequalities and not identified on existing outcome measures recommended for people living with frailty.

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“…Measure Yourself Concerns and Wellbeing MYCaW is cancer- and palliative care-specific and developed to measure the effects of CIT interventions. ( 17 )…”

Section: Methodsmentioning

confidence: 99%

The Development, Validity, and Responsiveness of a Patient-Centred Outcome Measurement Tool for Evaluating Integrative Medicine Interventions

Cabo,

Neil Browne

2023

IJTMB

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Background: The paper sets out the development, validity, and responsiveness of the Integrative Medicine Treatment Evaluation Form (IMTEF), which has been designed to measure the effects of complementary and integrative therapy (CIT) interventions in cancer and palliative care (PC) patients in a National Health Service (NHS) hospital setting. Treatment evaluation is essential for ensuring safety and quality of services, for meeting NHS governance requirements. It also helps to add to the evidence base for complementary and integrative therapies through collecting data about treatments. Methods: A number of different Patient Reported Outcome Measures (PROMs) tools were reviewed in order to design the IMTEF, which details questions that captures both quantitative and qualitative data. The IMTEF was reviewed by patients and a range of health care practitioners. Results: IMTEF’s validity is supported by feedback from health care practitioners and patients, by its ability to detect different degrees of change in relation to change scores, and by its correlations with Visual Analog Scale (VAS) scores. Conclusion: The IMTEF can be used to assess the effects of therapeutic bodywork and CITs when many of the patients do not have the capacity or the time to answer many questions, and when therapists do not know in advance the number of treatments that patients will be able to receive. Because of the way it is structured, it can also assess the effects after a number of sessions.

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Development of Measure Yourself Concerns and Wellbeing for informal caregivers of people with cancer—a multicentred study

Cited by 7 publications

References 39 publications

Co-afflicted but invisible: A qualitative study of perceptions among informal caregivers in cancer care

Co-afflicted but invisible: A qualitative study of perceptions among informal caregivers in cancer care

Developing a framework of concerns from people living with frailty, for the Measure Yourself Concerns and Wellbeing (MYCaW) person-centred outcome measure

The Development, Validity, and Responsiveness of a Patient-Centred Outcome Measurement Tool for Evaluating Integrative Medicine Interventions

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