Health expectations : an international journal of public participation in health care and health policy
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Caregivers often undertake medication management for people living with dementia without formal training. There is a need to evaluate caregiver medication management practices for people living with dementia to identify and address the key issues that contribute to caregiver burden. ⋯ From the authors' previous research, caregivers highlighted the need to address key issues in medication management for people living with dementia.
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Caregivers often undertake medication management for people living with dementia without formal training. There is a need to evaluate caregiver medication management practices for people living with dementia to identify and address the key issues that contribute to caregiver burden. ⋯ From the authors' previous research, caregivers highlighted the need to address key issues in medication management for people living with dementia.
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Health research is evolving to include patient stakeholders (patients, families and caregivers) as active members of research teams. Frameworks describing the conceptual foundations underlying this engagement and strategies detailing best practice activities to facilitate engagement have been published to guide these efforts. ⋯ Engaging patient stakeholders in research as partners presents an opportunity to design, implement and disseminate patient-centred research. This review creates an overarching foundational framework for authentic and sustainable partnerships between patient stakeholders and researchers.
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There is widespread agreement that the public should be engaged in health-care decision making. One method of engagement that is gaining prominence is the citizens' jury, which places citizens at the centre of the deliberative process. However, little is known about how the jury process works in a health-care context. There is even less clarity about how consumer perspectives are heard within citizens' juries and with what consequences. ⋯ The potential role of consumer voices in influencing deliberations and recommendations of citizens' juries requires greater attention. Much needed knowledge about the nuances of deliberative processes will contribute to an assessment of the usefulness of citizens' juries as a public engagement mechanism.
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Multiple Sclerosis (MS) is a chronic, degenerative condition with an estimated UK prevalence of 100 000. Contact with health-care services is frequent and long-term; however, little research has investigated the experiences of health care for MS in the UK. ⋯ This study provides the first review of the UK evidence base of experiences of health care for MS. Future research should investigate experiences of care after diagnosis in a more varied sample of participants.