| 1. |
- Ali, Lilas, 1981, et al.
(författare)
-
Person-centred care by a combined digital platform and structured telephone support for people with chronic obstructive pulmonary disease and/or chronic heart failure: study protocol for the PROTECT randomised controlled trial
- 2020
-
Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 10:7
-
Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: A core feature of chronic obstructive pulmonary disorder (COPD) and chronic heart failure (CHF) is that symptoms may change rapidly because of illness progression. Thus, these chronic conditions are associated with high rehospitalisation rates. Person-centred care (PCC) has been shown to have several benefits for patients with COPD or CHF (or both disorders) but it has not yet been investigated through e-health services. AIM: The project aims to evaluate the effects of PCC by a combined digital platform and structured telephone support for people with COPD and/or CHF. METHODS AND ANALYSIS: A randomised controlled trial with open, parallel groups which employs a participatory design process will be used. This project will also include process and health economic evaluation of the intervention. ETHICS AND DISSEMINATION: Ethical approval has been secured from the Regional Ethical Review Board in Gothenburg, Sweden (Dnr 063-17 and T063-18). Results will be presented at conferences and to healthcare professionals, participants and patient organisations. Findings will also be submitted for publication in peer-reviewed journals. TRIAL REGISTRATION NUMBER: NCT03183817.
|
|
| 2. |
- Barenfeld, Emmelie, 1981, et al.
(författare)
-
Becoming more of an insider: A grounded theory study on patients' experience of a person-centred e-health intervention.
- 2020
-
Ingår i: PloS one. - : Public Library of Science (PLoS). - 1932-6203. ; 15:11
-
Tidskriftsartikel (refereegranskat)abstract
- The aim was to explore the experiences of a person-centred e-health intervention, in patients diagnosed with chronic obstructive pulmonary disease (COPD) or chronic heart failure (CHF).Grounded theory was applied to gather and analyse data.The study is part of a research project evaluating the effects of person-centred care (PCC) using a digital platform and structured telephone support for people with COPD or CHF recruited from nine primary care units in Sweden.Twelve patients from the intervention group were purposefully selected in accordance with the initial sampling criteria.The intervention was delivered through a digital platform and telephone support system for 6 months. The intervention relied on person-centred ethics operationalised through three core PCC components: patient narratives, partnership and shared documentation.A core category was formulated: Being welcomed through the side door when lacking the front door keys. The core category reflects how a PCC intervention delivered remotely provides access to mutual and informal meetings at times when professional contacts were desired to support patient self-management goals. According to patients' wishes, family and friends were seldom invited as care partners in the e-health context.A PCC intervention delivered remotely as a complement to standard care in a primary care setting for patients diagnosed with COPD or CHF is a viable approach to increase patients' access and involvement in preventive care. The e-health intervention seemed to facilitate PCC, strengthen patients' position in the health service system and support their self-management.
|
|
| 3. |
|
|
| 4. |
- Barenfeld, Emmelie, 1981, et al.
(författare)
-
Meaningful use of a digital platform and structured telephone support to facilitate remote person-centred care - a mixed-method study on patient perspectives
- 2022
-
Ingår i: Bmc Health Services Research. - : Springer Science and Business Media LLC. - 1472-6963. ; 22:1
-
Tidskriftsartikel (refereegranskat)abstract
- Background Process evaluations are useful in clarifying results obtained from randomised controlled trials (RCTs). Traditionally, the degree of intervention usage in process evaluations is monitored by measuring dose or evaluating implementation fidelity. From a person-centred perspective, such evaluations should be supplemented with patients' experiences of meaningful use, given that intervention use should be agreed upon between interested parties and tailored to each patient. This study aimed to elucidate patients' experiences of a remote person-centred care (PCC) intervention by deepening the understanding of, if, how and for whom the intervention contributed to meaningful use. Methods Patients (n = 86) were recruited from the RCT PROTECT intervention group. A convergent mixed-method approach was implemented. Data were collected in parallel with the ongoing RCT via a survey, including ratings and written comments on meaningful or non-meaningful use. Also, interviews were performed with twelve purposefully selected participants. Descriptive statistics, logistic regression and content analysis were employed. Data sources were integrated in the results. Results Most participants rated the overall intervention as meaningful to use, with the telephone support rated as most meaningful. Interviews and written comments showed that patient ratings on meaningful use were explained by four categories: Not in need, Communication deficiency, Benefits in everyday life and A personal boost. Meaningful use of rating symptoms on the digital platform was predicted by living alone (adjusted odds ratio [aOR] = 2.8 P = .044). A diagnosis of chronic obstructive pulmonary disease (COPD) predicted meaningful use of digital platform direct messaging (aOR = 3.5, P = .045). Moreover, having access to direct-dial telephone contact explained meaningful use among participants with low ratings of technical competence (aOR = 3.6, P = .014). Conclusions The combined digital platform and structured telephone support could be helpful in identifying preventive actions to maintain health for people diagnosed with COPD and chronic heart failure but tends to be more meaningful for those diagnosed with COPD. Overall, lower adoption of the digital platform was seen compared to telephone support. Shortcomings were noted in the digital platform's implementation that negatively influences experiences of meaningful use. When used, the intervention proved to be an easily applicable and valued tool to support preventive actions in a person-centred manner.
|
|
| 5. |
- Berge, Isak, et al.
(författare)
-
A real eye-opener: Nursing home staff experiences of co-designing nursing home services together with residents
- 2022
-
Ingår i: Journal of Aging Studies. - : Elsevier BV. - 0890-4065 .- 1879-193X. ; 62
-
Tidskriftsartikel (refereegranskat)abstract
- Introduction: Research and healthcare services struggle to fulfil the desires and needs of nursing home residents, and there is a call for person-centredness in both research and healthcare practice. Involvement of people outside academia in research has been advocated in an effort to increase the relevance and impact of research findings for the public. However, little is known on how to involve nursing home residents in research, and the purpose of this study was, therefore, to learn from professional experiences of working with this group. More specifically, the aim of the study was to explore nursing home staff experiences of co-designing nursing home services with the residents. Method: Focus group methodology was used. A total of 17 nursing home staff members (15 women and two men) from two nursing homes participated in four focus groups. Both homogeneity and heterogeneity were strived for during recruitment. Results: The analysis is summarised in one theme and five sub-themes, describing the co-design process as an eye-opener for staff in terms of realising their own, as well as the residents', hidden abilities, and the importance of combining personal and professional knowledge of the residents in daily care and services. Conclusion: The major finding is the contribution of knowledge on how co-designing processes in nursing homes could change the dynamics of the relationships between the people involved, and that this, in turn, could realise the resources and knowledge within each person. What researchers in ageing and health can learn from the present findings is the importance of developing genuine and person-centred relationships with both nursing home residents and staff.
|
|
| 6. |
- Berge, Isak, et al.
(författare)
-
Challenging oneself on the threshold to the world of research – frail older people’s experiences of involvement in research
- 2020
-
Ingår i: BMC Geriatrics. - : Springer Science and Business Media LLC. - 1471-2318. ; 20:1
-
Tidskriftsartikel (refereegranskat)abstract
- Background: User involvement of people outside academia in research is argued to increase relevance of research for society and to empower the involved lay persons. Frail older people can be a hard to reach group for research and thus an underrepresented group in research. There is a lack of knowledge how collaboration with frail older people should be best performed. Therefore, the aim of this study was to explore frail older people’s experiences of involvement in research. Methods: In this study we have invited people, 75 years of age or older screened as physically frail and who have previously participated in a study as data sources, to share their experiences by intensive interviewing. Data was collected and analysed in parallel inspired by a constructivist grounded theory approach. Results: The results demonstrate how frail older people have different incentives, how their context of ageing and the unusual position of being involved in research altogether influenced how, where and in what way they wished to be involved in research. This is described in three categories: Contributing to making a difference for oneself and others, Living a frail existence and Being on somebody else’s turf. The categories compose the core category, Challenging oneself on the threshold to the world of research, which symbolises the perceived distance between the frail older people themselves and the research world, but also the challenges the frail older people could go through when choosing to be involved in research. Conclusions: Frail older people have a varied capacity to participate in research, but in what way and how is difficult to know before they have been involved in the process of research. Our results advocate that it is problematic to exclude frail older people a priori and that there is a potential for new perspectives and knowledge to be shaped in the encounter and in the relationship between the researcher and the frail older person. For research to be able to cater for frail older people’s needs of health services, their voices need to be heard and taken into consideration.
|
|
| 7. |
- Cederberg, Matilda, et al.
(författare)
-
A lowered threshold to partnerships: a mixed methods process evaluation of participants' experiences of a person-centred eHealth intervention
- 2023
-
Ingår i: Bmc Health Services Research. ; 23:1
-
Tidskriftsartikel (refereegranskat)abstract
- BackgroundIn order to understand pathways of complex interventions, the Medical Research Council has suggested that process evaluations should be conducted alongside randomised controlled trials (RCTs). This paper presents a mixed methods process evaluation of a complex, person-centred eHealth intervention for persons on sick leave with common mental disorders.AimThe aim of the study was to explore participants' experiences of a person-centred eHealth intervention and illuminate meaningful activities and processes.MethodsParticipants were recruited from the intervention arm of an RCT (n = 102). Questionnaires on perceived meaningfulness of the overall intervention and intervention activities were sent to participants on two occasions, after 3 and 6 months, and semi-structured interviews were conducted with a purposeful sample of 15 participants in the intervention group. Questionnaire data were analysed using descriptive statistics, and interview data were analysed using qualitative content analysis. The quantitative and qualitative data strands were integrated at interpretation.ResultsAt both follow-ups, a majority of participants reported that the intervention was fully or partly meaningful and that the most meaningful activity was the phone calls with health care professionals working in the intervention. In the qualitative analysis, three categories describing participants' experiences of the intervention were formed: Acknowledgment in a disconcerting situation, Finding ways forward and Unmet expectations. A synthesis of quantitative and qualitative findings resulted in the overarching theme of meaningfulness as constituted by a lowered threshold to partnerships: support within reach, when needed.ConclusionExperiences of meaningfulness of the intervention were constituted by a lowered threshold to forming care partnerships, in which support was within reach, when needed. If the content of the intervention was not in accordance with individuals' needs or expectations, access alone did not suffice to constitute meaningfulness.Trial registrationClinicalTrials.gov; NCT03404583; 19/01/2018.
|
|
| 8. |
- Dahlin-Ivanoff, Synneve, 1950, et al.
(författare)
-
Research collaboration with older people as a matter of scientific quality and ethics: a focus group study with researchers in ageing and health.
- 2024
-
Ingår i: Research involvement and engagement. - : BioMed Central Ltd.. - 2056-7529. ; 10:1
-
Tidskriftsartikel (refereegranskat)abstract
- Society is placing increasing demands on collaboration with actors outside the academia to be involved in the research process, and the responsibility for turning this into reality lies with the researchers. As research collaboration is a way to increase the societal relevance of research and since older people have the right to be actively involved in research that concerns them, this study is addressed to researchers who work with and for older people. The purpose of this article is to explore researchers' experiences of research collaboration with the heterogeneous group of older people, from healthy to frail.The focus group method was applied based on a qualitative approach that is based on a social constructivist research tradition. It differs from other qualitative methods, such as interviews, in that it encourages interaction between research participants and contributes to shedding light on a collective understanding of the world. A total of 14 researchers participated in four focus groups (three to five participants/group).The results provided support for the overall theme: "Good scientific quality and ethics are balanced against the needs and abilities of older people". This means a balance between the researcher and the older people collaborating with them to receive the best possible scientific quality. This is highlighted in the core category "Positioning for research collaboration" with the subcategories "Involvement or not", "Traditional or innovative thinking" and "Selectivity or representativeness", and the core category "Research collaboration - an ethical issue of power" with the subcategories "Research collaboration a risk for freedom of research", "Research collaboration a risk of abuse of power" and "Discriminatory academic power structures create ethical issues".Addressing the balancing act of collaborating with older people in research, the findings contribute with an understanding of the importance of researchers' awareness of social and academic structures to minimise the risk of epistemic injustices in research on ageing and health. We want to highlight the researchers' voice and clarify the role that researchers have in terms of the opportunities for older people to become part of the collective understanding of ageing and health and make their voices heard.
|
|
| 9. |
|
|
| 10. |
- Haak, Maria, et al.
(författare)
-
Research as an essentiality beyond one’s own competence : an interview study on frail older people's view of research
- 2024
-
Ingår i: Research Involvement and Engagement. - : BioMed Central Ltd.. - 2056-7529. ; 7:1, s. 1-9
-
Tidskriftsartikel (refereegranskat)abstract
- Background: There is an increased interest to make the voices of frail older people heard in research by actively involving them in research processes. Involving frail older people in research could, however, be perceived as challenging by researchers. To actively involve frail older people in research processes in a meaningful way, the knowledge about their own views on what research is must be widened and deepened. Methods: Individual interviews were conducted with 17 frail older men and women with former experience of participation in research studies. Qualitative data were analysed using content analysis. Results: Frail older people’s views on what research means are described through the main category; An essentiality beyond one’s own competence, which describes research as a complex process that is important for society but difficult to understand. This is described in the sub-categories; A driving force for societal development, A benefit when based on lived experience, A source of knowledge difficult to access and understand, and A respected job filled with responsibilities. Conclusion: Different views on research from the perspective of frail older people show that research is viewed as a complex yet important phenomenon to frail older people. Research was also seen as a natural part in society. Research was viewed as difficult to access and understand. Thus, researchers must train themselves to communicate research findings to the public in an understandable way. To create common understandings through information and education, researchers might be better placed to involve frail older people in a meaningful way and thereby also have the possibility to develop good working practice and relationships with those involved.
|
|
