77 research outputs found
25 Involvement in palliative and end of life care research
No full textInvolvement of those with experience of using care services is now an important and mandatory part of health and social care research, including palliative and end of life care. Those with direct experience of using palliative and end of life care (patients, carers, friends or family members), such as hospices and care homes can enhance and shape research (Goodman et al., 2011). The distinction is made between ‘participants’ in studies who provide ‘data’ and research carried out ‘with’ or ‘by’ members of the public (as defined by INVOLVE). Involvement in these research areas, has its own challenges (Backhouse et al., 2016; Mockford et al., 2016) and innovative approaches are needed (Brighton et al., 2018). Seeking involvement from people with experience of care at an early stage of research development is key to ensure the research is user-friendly, feasible and has relevant outcomes. Three organisations ran a joint workshop focussing on palliative and end of life care to enable researchers to receive face to face comments from people with experience of palliative and end of life care on their research projects in a ‘dragon’s den’ style session. We will share 1) our experience of this approach to involvement, 2) the experiences of the people who took part and 3) findings from the post evaluation. We will also outline the challenges of involving people in this research area, the importance of ‘feedback’ to those taking part (Mathie et al, 2018) and our learning for the future
End of life care
No full textThe majority of end-of-life care research is based in health care settings and/or is led by health professionals or health based researchers. This review is informed by that work. It is a guide for researchers undertaking projects on end of life care when it is provided in residential and long term care settings, people's homes and community settings. These are locations where, alongside health care services, social care is involved in providing support to people who are dying. The aim of the review is to provide an overview of the range of research methods that have been commonly used in end of life care research, their relative advantages and disadvantages and a discussion of the particular ethical challenges and logistical issues that can arise when undertaking research in this area
Interaction to enhance mindfulness: : positive strategies to increase tourists' awareness of HIV and sexual health risks on holiday (ch8)
No full textThe RAPPORT study: RAPPORT: ReseArch with Patient and Public invOlvement: A Realist evaluaTion
No full textThis research seeks to examine the extent and types of public involvement (PI) in a range of national research studies. The aim is to assess different approaches to PI amongst six different research topic areas; cystic fibrosis, diabetes, arthritis, dementia, learning disabilities and public health.
The presentation will describe key findings from the first two phases of the study; a national scoping of PI in current or recent research studies listed on the UKCRN portfolio; and an on-line survey of 300 chief investigators. Plans for the third stage; the tracking of up to 20 case studies in four regions over 18 months will also be presented. It is hoped the audience will gain some understanding of the varied approaches to PI between and within topic areas and levels of PI involvement in different types of research design. Chief investigators’ comments about the benefits and challenges of PI will be discussed alongside early findings around contextual factors that appear to impact on how PI is incorporated within studies.
The RAPPORT research has PI at all stages from research proposal development, as co-applicants, advisory committee membership, design of data collection tools, co-researchers in the case study phase through to dissemination
A case study Documenting coastal monitoring and modelling techniques in Sicily, Italy: An island example
No full textOverview of coastal monitoring in Sicily, Italy.Messin
The highland lute
No full textTitle: Lahuta e Malcis (The highland lute) Originally published: Shkodër, Shtypshkronja Françeskane, 1937 Language: Albanian The excerpts used are from The Highland Lute (Lahuta e Malcis); The Albanian National Epic, translated from the Albanian by Robert Elsie & Janice Mathie-Heck (London and New York: I.B. Tauris in association with The Centre for Albanian Studies, 2005), pp. 3–4. About the author Gjergj Fishta (born Zef Ndoka) [1871, Fishtë, near Shkodra – 1939, Shkodra, west Albania]: poe..
Talking about living and dying with the oldest old: public involvement in a study on end of life care in care homes
No full textBackground: Public involvement in research on sensitive subjects, such as death and dying, can help to ensure
that questions are framed to reflect the interests of their peers, develop a shared understanding of issues raised,
and moderate the often unequal power relationship between researcher and participant. This paper describes the
contribution and impact of older members of a Public Involvement in Research group (PIRg) to a study on living
and dying in care homes.
Methods: A longitudinal study, with a mixed method approach, its aims were to capture key experiences, events
and change over one year, of older people resident in participating care homes in the East of England. Residents
were interviewed up to three times and their case notes were reviewed four times over the year. Interviews were
semi structured, and recorded. Four members of a Public Involvement in Research group (PIRg) contributed to
preliminary discussions about the research and three were involved with many of the subsequent stages of the
research process including the facilitation of discussion groups with residents.
Results: There were three areas where the involvement of the Public Involvement in Research group (PIRg)
positively influenced the study process. These were recruitment, governance and safeguarding, and in collaboration
with the residents in the care homes, the discussion and interpretation of emergent findings. PIRg members were
of similar age to the residents and their involvement provided different and often more reflective insights of the
significance of the findings for the participants. There were examples where decision making about the range of
PIRg participation was not always negotiable, and this raised issues about power relationships within the team.
Nevertheless, PIRg members expressed personal benefit and satisfaction through participating in the research and a
commitment to continue to support research with this older age group.
Conclusions: The contribution of the PIRg supported a successful recruitment process that exceeded response
rates of other studies in care homes. It safeguarded residents during the conduct of research on a sensitive topic
and helped in validating the interview data gathered by the researchers through the discussion groups facilitated
by the PIRg. There were power differentials that persisted and affected PIRg participation. The study has showed
the value of developing job descriptions and a more formal means of setting out respective expectations. Future
research may wish to elicit the views of focal participants in such studies about the mediation of research by
public involvement in research
‘Seamless care? Just a list would have helped!’ Older people and their carer’s experiences of support with medication on discharge home from hospital
No full textBackground Many older people use one or more prescribed medicines on a daily basis. Effective medicines management at hospital discharge can support appropriate use of medicines following discharge and help avoid unnecessary hospital re-admission. Many people, however, feel they receive insufficient information about medicines on discharge from hospital. Objectives To explore older people and their family carers' experience of hospital discharge in relationship to the organization and management of medicines. Design Qualitative interviews with older people over 75 years old, taking four or more medicines, and their carers, following discharge from hospital in the United Kingdom (UK). Participants completed medication diaries prior to the interview. Setting Interviews took place in the participant's home. Results Nineteen interviews were conducted involving 12 carers and seven older people. Participants were generally not satisfied with the discharge process, particularly concerning perceived delays in discharge. Inadequate explanations about medicines at discharge were commonly reported and led to omission of medicines, incorrect dosage, anxiety and confusion. Poor communication between the hospital and general practitioners or community pharmacists was also evident. Conclusions Despite significant policy recommendations and research in this area, many problems with the management of medicines during hospital discharge were shown, and a lack of partnership was evident between hospital staff and patients/family carers regarding the use of medicines post-discharge. Improved medicines management during hospital discharge is required to ensure older people take their medications as prescribed and to protect them from the adverse effects of medicines not being taken correctly
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