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- Ali, Lilas, 1981, et al.
(författare)
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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
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Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 10:7
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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.
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| 2. |
- Barenfeld, Emmelie, 1981, et al.
(författare)
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Becoming more of an insider: A grounded theory study on patients' experience of a person-centred e-health intervention.
- 2020
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Ingår i: PloS one. - : Public Library of Science (PLoS). - 1932-6203. ; 15:11
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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.
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| 4. |
- Barenfeld, Emmelie, 1981, et al.
(författare)
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Meaningful use of a digital platform and structured telephone support to facilitate remote person-centred care - a mixed-method study on patient perspectives
- 2022
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Ingår i: Bmc Health Services Research. - : Springer Science and Business Media LLC. - 1472-6963. ; 22:1
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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.
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| 5. |
- Cederberg, Matilda, et al.
(författare)
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A lowered threshold to partnerships: a mixed methods process evaluation of participants' experiences of a person-centred eHealth intervention
- 2023
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Ingår i: Bmc Health Services Research. ; 23:1
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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.
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| 8. |
- Ali, Lilas, 1981, et al.
(författare)
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Caring Situation, Health, Self-efficacy, and Stress in Young Informal Carers of Family and Friends with Mental Illness in Sweden
- 2015
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Ingår i: Issues in Mental Health Nursing. - New York, NY : Informa UK Limited. - 0161-2840 .- 1096-4673. ; 36:6, s. 407-415
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Tidskriftsartikel (refereegranskat)abstract
- This study compared the caring situation, health, self-efficacy, and stress of young (16-25) informal carers (YICs) supporting a family member with mental illness with that of YICs supporting a friend. A sample of 225 carers, assigned to a family group (n = 97) or a friend group (n = 128) completed the questionnaire. It was found that the family group experiences a lower level of support and friends experienced a lower positive value of caring. No other differences in health, general self-efficacy and stress were found. YICs endure different social situations, which is why further study of the needs of YICs, especially those supporting friends, is urgently needed.
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| 9. |
- Ali, Lilas, 1981, et al.
(författare)
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Daily life for young adults who care for a person with mental illness: a qualitative study
- 2012
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Ingår i: Journal of Psychiatric and Mental Health Nursing. - Chichester : Wiley. - 1351-0126 .- 1365-2850. ; 19:7, s. 610-617
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Tidskriftsartikel (refereegranskat)abstract
- Accessible summary The burden of caring for a person with mental illness has been transferred to families and close friends. Daily life for young informal carers is unpredictable and they need to stay alert and prepared for events beyond their control. Young informal carers are concerned young adults who support a family member or friend unconditionally. Supporting a friend is related to as a great a sense of individual responsibility as supporting a family member. Abstract This study describes the daily life and management strategies of young informal carers of family members or friends with mental illness. Twelve young adults (three men and nine women; 1625 years old) in Sweden were voluntarily recruited between February and May 2008. Data collected through eight individual semi-structured interviews and one focus group interview were analysed using qualitative content analysis. The findings revealed nine subthemes that were further grouped into three main themes: showing concern, providing support and using management strategies. Participants lived in constant readiness for something unexpected to happen to the person they cared for, and their role in the relationship could change quickly from family member or friend to guardian or supervisor. Supporting a friend was considered as large a personal responsibility as supporting a family member. Their management strategies were based on individual capacities and their ability to step aside should the situation become too demanding. These young informal carers need support in caring for the mentally ill. As the internet becomes increasingly fundamental to daily life, support could be provided most effectively through person-centred web sites.
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| 10. |
- Ali, Lilas, 1981-, et al.
(författare)
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Effectiveness of Web-Based versus Folder Support Interventions for Young Informal Carers of Persons with Mental Illness : a Randomized Controlled Trial
- 2013
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Konferensbidrag (refereegranskat)abstract
- Background: Changes in psychiatric services mean more young persons have to care for a mentally ill family member or friend while they themselves are in the sensitive transition to adulthood.Objective: Compare the impact of two interventions, a web-based support and a folder support, for young persons who care for people who suffer from mental illness.Method: This study was a randomized control trial, following the CONSORT statements and eConsort support. Primary outcome variable was stress, and secondary outcome variables were caring situation, general self-efficacy, well-being, health, and quality of life of young informal carers (N=241). Data were collected in June 2010 to April 2011, with self-assessment questionnaires three times, four months apart, comparing the two interventions and also to detect changes.Results: The result showed that stress levels were high in both groups at baseline, but decreased significantly in the folder group. The folder group had significant improvement in their caring situation (also significantly different from the web group), general self-efficacy, well-being, and quality of life. The web group show significant increase in well-being.Conclusion: Young informal carers who take on the responsibility for people close to them with mental illness; suffer consequences on their own health. They live in a life-situation characterized by high stress and low well-being. This signals a need for support for these young persons.Clinical relevance: The findings in this study are uniquely valuable because of the target group and the comparison of two different interventions to support them. The non-significant differences in the data show that each intervention can be effective, and that it depends upon the individual’s preferences. This highlights the importance of adopting person-centred approach, in which young persons can themselves choose support strategy
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