Patient or user involvement in health research is well-established but is often limited to advising on research questions and design, leaving researchers to collect and analyse ‘data’ (which in this paper means written copies of interviews with patients about their experiences). We were working with sets of interviews with 1) young people with depression and 2) people with experiences of stroke. We were looking for key themes that it would be useful for the NHS to know about, and we developed short films which healthcare staff can use to think about how to make care more patient-centred. We wanted to see what user involvement in this analysis would bring, and how best to achieve it practically. After the researcher team had analysed the interviews, we ran two one-day workshops with people with relevant experience as a patient/service user or carer. We gave them some brief training in how to analyse interviews and how they might be used for improving the quality of care. Then we looked at extracts from the interviews, and discussed whether people could see the same themes as the researcher. People identified similar themes to the researcher, but also identified new details the researcher had missed. However, they felt reading large amounts of text was not the best way to use their time and experience. Instead they recommended that a better approach would be for a researcher to meet with a group of users at the start of analysis, to discuss what to look out for. Background
 Patient or user involvement in health research is a well-established principle. However, involvement is often limited to advising on research questions and design, leaving researchers to complete data collection and analysis. Involvement in data analysis is one of the most challenging, least well-explored aspects of involvement. Qualitative interview data forms high volumes of rich, complex material which can be daunting to work with. Analysing narrative interviews with patients is central to a patient-centred quality improvement method called experience-based co-design. The analysis identifies ‘touchpoints’ – key moments of healthcare experiences – and leads to the production of a ‘trigger film’ to spark codesign discussions between patients and staff. We wanted to see what user involvement in this analysis would bring, and how best to achieve it. Methods
 As part of a wider secondary analysis study to create new trigger films, we re-analysed interview transcripts on experiences of young people with depression and experiences of stroke. We then ran two workshops with people with relevant lived experience, working with extracts from the same materials after brief training. Results
 People involved in the workshops identified similar themes to the researcher, but also brought some new insights. While they engaged easily with the materials selected, we under-estimated how much time it would take people to work through these. Discussion and sharing experiences and perspectives were highly valued in the first workshop. In the second workshop, we therefore started with group discussion, based on people’s own experience, of what they thought the touchpoints would be, and later viewed a draft trigger film together to see how it compared. Conclusions
 Those involved felt that while analysing transcripts was possible in small quantities, it was not best use of their time. We suggest that conversation, rather than data, is at the heart of user involvement in analysis. One way to retain the value of lived experience in the analytic process, without over-burdening people with data, is to elicit user reflections on their experience at the start of analysis, and use this as a guide to direct both researcher and service user attention during the remainder of the process.

/pdf/involving-service-users-in-the-qualitative-analysis-of-3ouf6z9ot5.pdf

Involving service users in the qualitative analysis of patient narratives to support healthcare quality improvement

Empathy, loneliness, burnout, and life satisfaction in Chilean nurses of palliative care and homecare services

Resumo Objetivo: Identificar na literatura a producao cientifica sobre as intervencoes educativas utilizadas por enfermeiros na promocao da saude do idoso. Metodos: Revisao integrativa de literatura realizada nas bases de dados LILACS, MEDLINE, CINAHL e Web of Science, entre 2007 e 2017, em portugues, ingles e espanhol, utilizando os descritores: “aged”; “aging”; “aged, 80 and over”; “health services for the aged”; “nursing”; “clinical trial”; “technology/ED”; “educational technology”; (health education AND technology”); “health promotion”, combinados por meio dos operadores booleanos “AND” e “OR”. Resultados: Foram incluidos 22 estudos. As intervencoes educativas utilizadas por enfermeiros na promocao da saude do idoso foram: orientacoes pedagogicas durante a consulta de enfermagem (50%), acompanhamento domiciliar (27,8%), aconselhamento com dinâmicas motivacionais (11,1%) e sessoes educativas com estrategias ludicas (11,1%). Conclusao: O Enfermeiro desempenha papel fundamental na promocao da saude por coordenar o plano de cuidados pelo vinculo que estabelece com os usuarios, familiares e cuidadores a partir de acoes educativas capazes de modificar atitudes e proporcionar saude. As acoes educativas promoveram saude por oportunizar a maior adocao de habitos saudaveis, acompanhamento terapeutico e bem estar.

https://acta-ape.org/wp-content/uploads/articles_xml/1982-0194-ape-31-04-0446/1982-0194-ape-31-04-0446.pdf

Intervenções educativas para promoção da saúde do idoso: revisão integrativa

A wide range of initiatives on early detection and intervention have been developed to proactively identify problems related to health and wellbeing in (frail) older people, with the aim of supporting them to live independently for as long as possible. Nevertheless, it remains unclear what the best way is to design such initiatives and how older people’s needs and preferences can be best addressed. This study aimed to address this gap in the literature by exploring: 1) older people’s perspectives on health and living environment in relation to living independently at home; 2) older people’s needs and preferences in relation to initiating and receiving care and support; and 3) professionals’ views on what would be necessary to enable the alignment of early detection initiatives with older people’s own needs and preferences. In this qualitative study, we conducted semi-structured interviews with 36 older people and 19 professionals in proactive elderly care. Data were analysed using the framework analysis method. From the interviews with older people important themes in relation to health and living environment emerged, such as maintaining independence, appropriate housing, social relationships, a supporting network and a sense of purpose and autonomy. Older people preferred to remain self-sufficient, and they would rather not ask for help for psychological or social problems. However, the interviews also highlighted that they were not always able or willing to anticipate future needs, which can hinder early detection or early intervention. At the same time, professionals indicated that older people tend to over-estimate their self-reliance and therefore advocated for early detection and intervention, including social and psychological issues. Older people have a broad range of needs in different domains of life. Discrepancies exist between older people and professionals with regard to their views on timing and scope of early detection initiatives. This study aimed to reveal starting-points for better alignment between initiatives and older people’s needs and preferences. Such starting points may support policy makers and care professionals involved in early detection initiatives to make more informed decisions.

/pdf/improving-early-detection-initiatives-a-qualitative-study-379qyom6hn.pdf

Improving early detection initiatives: a qualitative study exploring perspectives of older people and professionals

Introduction: While many different factors can undermine older people’s ability to live safely at home, safety as an explicit aspect of integrated care for older people living at home is an underexplored topic in research. In the context of a European project on integrated care, this study aims to improve our understanding of how safety is addressed in integrated care practices across Europe. Methods: This multiple case study included thirteen integrated care sites from seven European countries. The Framework Method guided content analyses of the case study reports. Activities were clustered into activities aimed at identifying and managing risks, or activities addressing specific risks related to older people’s functioning, behaviour, social environment, physical environment and health and social care receipt. Results: Case studies included a broad range of activities addressing older people’s safety. Although care providers felt they sufficiently addressed safety issues, older people were often concerned and insecure about their safety. Attention to the practical and social aspects of safety was often insufficient. Conclusions and discussion: Integrated care services across Europe address older people’s safety in many ways. Further integration of health and social care solutions is necessary to enhance older people’s perceptions of safety.

/pdf/supporting-older-people-to-live-safely-at-home-findings-from-1biawfxxai.pdf

Supporting older people to live safely at home: Findings from thirteen case studies on integrated care across Europe

Aims and objectives
The objective of this study was to evaluate whether care provided in the care programmes matched the needs of older people.

Background
Care programmes were implemented in primary-care settings in the Netherlands to identify frail older people and to prevent further deterioration of health.

Design and methods
In total, 23 older people participated in in-depth interviews. Within this study, three older people participated as co-researchers; they gathered and analysed the data together with the academic researchers. Content analysis was used to analyse the data.

Results
Two categories emerged from the data: ‘Losing connections’ and ‘Receiving support to reconnect.’ ‘Losing connections’ reflects the needs of older people and ‘Receiving support to reconnect’ reflects their experience and the appreciated aspects of the provided care. A relationship of trust with the practice nurse (PN) appeared to be an important aspect of care, as it fostered the sharing of feelings and issues other than physical or medical problems that could not be shared with the general practitioner. The PNs are experienced as connectors, who help to restore feelings of connectedness and older peoples’ access to resources in the community.

Conclusions
The relationship with the PN was experienced as valuable because of the feelings of ‘connectedness’ it created. Through this connectedness, older people could discuss feelings of loneliness, depression and frustration in receiving and acquiring the appropriate resources and services with the PNs. Furthermore, the relationship with the PN helped the older people to gain access to other health professionals and services.

Implications for practice
The results imply that care for frail older people should include an awareness of the importance of the trusting relationship. Nurses can play a vital role in creating a trusting relationship and are able to bridge the gap between older people and other professionals and services.

Losing connections and receiving support to reconnect: experiences of frail older people within care programmes implemented in primary care settings.

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Losing connections and receiving support to reconnect: experiences of frail older people within care programmes implemented in primary care settings.