| 1. |
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| 2. |
- Ali, Lilas, 1985-, et al.
(author)
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Att använda internet vid datainsamling
- 2017. - 2
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In: Vetenskaplig teori och metod. - Lund : Studentlitteratur AB. - 9789144113289 ; , s. 217-232
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Book chapter (peer-reviewed)
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| 3. |
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| 4. |
- Ali, Lilas, 1981, et al.
(author)
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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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In: Issues in Mental Health Nursing. - New York, NY : Informa UK Limited. - 0161-2840 .- 1096-4673. ; 36:6, s. 407-415
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Journal article (peer-reviewed)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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| 5. |
- Ali, Lilas, 1981, et al.
(author)
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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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In: Journal of Psychiatric and Mental Health Nursing. - Chichester : Wiley. - 1351-0126 .- 1365-2850. ; 19:7, s. 610-617
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Journal article (peer-reviewed)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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| 6. |
- Ali, Lilas, 1981-, et al.
(author)
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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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Conference paper (peer-reviewed)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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| 7. |
- Ali, Lilas, 1981, et al.
(author)
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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
- 2014
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In: Patient Education and Counseling. - Shannon, Irland : Elsevier BV. - 0738-3991 .- 1873-5134. ; 94:3, s. 362-371
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Journal article (peer-reviewed)abstract
- 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. Methods: This study was a randomized control trial, following the CONSORT statements, which compared the impact of two interventions. 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, comparing the two interventions and also to detect changes. Results: The stress levels were high in both groups at baseline, but decreased in the folder group. The folder group had improvement in their caring situation (also different from the web group), general self-efficacy, well-being, and quality of life. The web group showed increase in well-being. Conclusion: Young informal carers who take on the responsibility for people close to them; 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. Practice implications: The non-significant differences show that each intervention can be effective, and that it depends upon the individual's preferences. This highlights the importance of adopting person-centered approach, in which young persons can themselves choose support strategy. © 2013 Elsevier Ireland Ltd.
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| 8. |
- Ali, Lilas, 1981, et al.
(author)
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Effects of person-centred care via telephone on self-efficacy in patients with chronic obstructive pulmonary disease: Subgroup analysis of a randomized controlled trial
- 2021
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In: Nursing Open. - : Wiley. - 2054-1058. ; 8:2, s. 927-935
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Journal article (peer-reviewed)abstract
- © 2020 The Authors. Nursing Open published by John Wiley & Sons Ltd. Aim: To evaluate the effects of PCC in the form of structured telephone support on self-reported cardiac self-efficacy in patients with COPD. Methods: We enrolled 105 patients, aged ≥50years, admitted to hospital and diagnosed with COPD from January 2015 to November 2016. The patients received usual care or PCC via telephone added to usual care. The Swedish Cardiac Self-Efficacy Scale comprising three dimensions (control symptoms, control illness and maintain functioning) was used as outcome measure. Data was collected at baseline, and at 3- and 6-month follow-ups. Results: At both the 3- and 6-month follow-ups, the intervention group improved significantly more than the control group in the control illness dimension (p=.012 and p=.032, respectively). No differences were found in the other two dimensions. Conclusions: PCC in the form of structured telephone support increases patients’ confidence in managing their illness and may be a feasible strategy to support patients in their homes.
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| 9. |
- Ali, Lilas, et al.
(author)
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eHälsa
- 2017. - 1
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In: Vårdpedagogik. - Stockholm : Liber. - 9789147112296 ; , s. 190-217
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Book chapter (peer-reviewed)
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| 10. |
- Ali, Lilas, et al.
(author)
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Need and Usage of Different Kind of Support among Young Informal Carers of Persons with Mental Illness
- 2014
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Conference paper (peer-reviewed)abstract
- Background: The high prevalence of mental illness among young person’s means that their relatives and close friends are exposed to stress by having to take on the responsibility for the support of family members or friends in difficult situations of life when suffering from mental illness. Young informal carers have shown to be exposed to a great burden in which they put their own daily tasks aside in order to stay close to the person who suffers from mental illness. Objective: Explore how young (16–25) informal carers of a person with a mental illness experience and use different kind of support, such as web-support, counseling, and group counseling, friends, family, relatives support societies, health care services etc. Method: In a mixed method approach, we first interviewed 12 young carers, and 241 completed a self-administered questionnaire. While the young carers strive to maintain control, their main support seems to be others in their lives, who often define the situation differently. Results: The carers said web-support, counseling, and group counseling might be helpful, yet very few had any professional support. The results also showed that the young informal carers’ safety net is their social network and the person who suffer from mental illness. Conclusion: Young informal carers are in need of a combination of web-based and face-to-face person-centered support, but they do not receive it. Professional support is required. Further studies about the needs of young informal carers of persons with mental illness especially those supporting friends, is necessary to gain before planning to start support interventions for them.
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| 11. |
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| 12. |
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| 13. |
- Ali, Lilas, 1981, et al.
(author)
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Need of support in people with chronic obstructive pulmonary disease
- 2018
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In: Journal of clinical nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 27:5-6
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Journal article (peer-reviewed)abstract
- OBJECTIVE: The aim of this study was to describe peoples' experiences and expectations of support when living with chronic obstructive pulmonary disease (COPD). METHOD: We conducted and analysed face-to-face or telephone interviews with 17 individuals (aged 44-77 years) diagnosed with COPD. The interviewer asked open-ended questions aimed at encouraging further narration, and we analysed the participants' narratives using a phenomenological hermeneutical approach. This report adheres to the COREQ guidelines. RESULTS: The overall theme suggests that people with COPD describe support as shared knowledge and experiences, based on the following subthemes; similar experiences, the need of genuine professional knowledge, self-reliance versus self-blame, and the Internet - feeling safe but uncertain. CONCLUSION: People with COPD find their strength through shared knowledge and dialogical support with others who have similar experiences and with professionals. A person-centred eHealth approach may be suitable for this group as it offers both collaboration and support. PRACTICE IMPLICATIONS: There is a demand for access to genuine professional knowledge as additional support to patients' own capabilities and needs. Patient associations were assessed as reliable sources of information and to some extent also support, but the importance of access to professional sources was also stressed. This article is protected by copyright. All rights reserved.
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| 14. |
- Ali, Lilas, 1981, et al.
(author)
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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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In: BMJ Open. - : BMJ. - 2044-6055. ; 10:7
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Journal article (peer-reviewed)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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| 15. |
- Ali, Lilas, 1981, et al.
(author)
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Person-centred psychosis care in the inpatient setting:Staff experiences of an educational intervention.
- 2016
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In: International Forum on Quality and Safety in Health Care. Gothenburg, Sweden 12-15 April 2016.
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Conference paper (other academic/artistic)abstract
- Introduction: The key component in this research project is to test and implement a person-centred psychosis care approach that leads to an active partnership between health professionals and patients. Only by transforming the relationship between the patient and the care provider from the present state of dependency into an equal partnership can we achieve a more effective care model with enhanced financial efficacy and patient self-efficacy. Person-centred psychosis care means to shift away from a model in which the patient is the passive target of a medical intervention to a model where a contractual arrangement is made involving the patient as an active part in the care and the decision-making process. The patient illness narrative is the starting point for building a collaborative, equalitarian health professional-patient partnership that confirms capacities in patients. The patient narrative is the patient´s account of his/her illness, symptoms, and the impact on life. Finally the narrative and agreed partnership needs to be documented in order to secure further care. Methods: The person centered care intervention will be implemented at all four in-patient wards at the Psychosis clinic. An implementation group has been formed and representatives from the four wards are included in this group (section leaders, heads of the wards, and senior ward psychiatrists). The implementation group makes decisions regarding the organization and content of the staff education sessions. The research process has a participatory design which is structured by the foundation pillars in the gPCC model and composes of four workshops together with 33% of the staff in the psychosis care wards, at the department of psychosis, Sahlgrenska University Hospital. All workshops focus on person-centred care and how to implement this care approach at all four in-patient wards at the Psychosis clinic. Now that the educational intervention has been completed it is in our belief that the care offered on the ward is more person-centred. This project will explore this with a simple “before” and “after” design. The primary outcome will be patient empowerment as measured by the “Making Decisions Empowerment Scale”. This scale been validated and used internationally in studies involving persons with severe mental ill-health. Results: All the participants in this project have completed the second phase of the gPCC implementation model and they have agreed on person-centred tasks to implement in their units. Our hypothesis is that persons who receive inpatient treatment after the implementation of the intervention will score higher on ratings of empowerment and consumer satisfaction than those on the “pre-intervention” wards. Further, we hypothesize that shorter hospital stays and less use of involuntary treatments will be observed on the post-intervention wards. Discussion: A person-centered care approach can increase partnership between mental health service users and providers. A basic tenant of person-centered care is that the patient is seen as a capable person who has self-respect and self-esteem. A key element in person-centred care is the dialogue between the professional and the patient, a dialogue with the person, rather than talking to (or informing) a person. The staff education package in itself provides us with an excellent opportunity for transfer of research findings into the care setting. The members of the teaching staff are used as active researchers who will incorporate results from ongoing of the teacher’s results from our ongoing clinical projects on cognition, adherence, and stigma.
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| 16. |
- Ali, Lilas, 1981, et al.
(author)
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Personcentrering vid psykisk ohälsa
- 2020
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In: Personcentrering inom hälso- och sjukvård. Från filosofi till praktik.. - 9789147129676 ; , s. 299-318
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Book chapter (other academic/artistic)
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| 17. |
- Ali, Lilas, 1981, et al.
(author)
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Support for young informal carers of persons with mental illness : A mixed-method study
- 2013
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In: Issues in Mental Health Nursing. - New York : Informa UK Limited. - 0161-2840 .- 1096-4673. ; 34:8, s. 611-618
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Journal article (peer-reviewed)abstract
- The aim of this study was to explore how young (16-25 year old) informal carers of a person with a mental illness experience and use support. In a mixed method approach, we interviewed 12 young carers, and 241 completed a self-administered questionnaire. While the young carers strive to maintain control, their main support seems to be others in their lives, who often define the situation differently. The carers said web-support, counseling, and group counseling might be helpful, yet very few had any professional support. Young carers are greatly in need of support and it should be provided.
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| 18. |
- Ali, Lilas, et al.
(author)
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The impact of a person-centred web-based intervention on young informal carers of people with mental illness
- 2015
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In: Abstracts: 19th International Philosophy of Nursing Society (IPONS) conference August 24-26, 2015 Karolinska Institutet, Stockholm, Sweden. - Stockholm : Karolinska Institutet. ; , s. 4-5
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Conference paper (peer-reviewed)abstract
- Background: Previous research show that young person’s often take responsibility and offer care and support for significant others who suffer from mental illness. This adoption of responsibility has consequences not only for the mentally ill, but also for the carer. A person-centred support approach to provide the young informal carers of what they are in need of is according to previous research essential, and in need of. As the internet becomes increasingly fundamental to young people in their daily lives, person-centred web-based interventions may be effective in supporting those caring for a person with mental illness.Objective: To analyze (according to stress, burden, quality of life, and self-efficacy) the impact of a person-centred web-based intervention (information, education, and support) for young persons who support family members or close friends with mental illness.Methods: The study design was prospective and randomized. The sample consisted of young informal carers (N = 241; 16–25 y), where N = 241 completed structured questionnaires at baseline and were allocated to person-centred web-based support (N = 121) respectively folder support (n =120) regarding available support in the society for young persons who support someone suffering from mental illness.Results: Data show that the stress levels were high in both groups at the start of the intervention, but decreased in the folder group, who also showed improvements in their caring situation (also different from the web-support group), general self-efficacy, well-being and their quality of life. The group who received person-centred web-based support showed significant increase in their well-being.Conclusion: It is of great importance to measure the stress and caring situation of young informal carers of persons with mental illness in order to understand their situation. One type of support could be person-centred web-based, however our results indicate that individuals seek support depending on their individual preferences. Since the responsibility of care has shifted from the health care services to the family and friends of the person suffering from a mental illness, more person- centred care/support interventions should be investigated for further development.
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| 19. |
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| 20. |
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| 21. |
- Allerby, Katarina, et al.
(author)
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Increasing person-centeredness in psychosis inpatient care: care consumption before and after a person-centered care intervention
- 2023
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In: Nordic Journal of Psychiatry. - 0803-9488 .- 1502-4725. ; 77:6, s. 600-607
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Journal article (peer-reviewed)abstract
- Background: Patients with psychotic disorders often need hospitalization with long stays. Person-centered care (PCC) has been shown to improve care quality and decrease the length of hospital stay in non-psychiatric settings. We carried out an educational intervention for inpatient staff, aiming to increase person-centeredness at a major Swedish psychosis clinic. The aim of this study was to test if the intervention could be associated with decreased length of hospital stay (LoS), involuntary stay (LoIS), and reduction in rapid readmissions. Methods: Data from the clinic’s administrative registry were compared for patients with a discharge diagnosis within the schizophrenia-spectrum treated during the one-year periods before and after the PCC intervention. Results: Contrary to our hypotheses, a quantile regression estimated longer LoS post-intervention, median difference 10.4 d (CI 4.73–16.10). Neither age, sex nor diagnostic category were associated with LoS. Of all inpatient days, ∼80% were involuntary. While LoIS was numerically longer post-intervention, the difference did not reach significance in the final regression model (median difference 7.95 d, CI −1.40 to 17.31). Proportions with readmission within 2 weeks of discharge did not differ (7.7% vs 5.2%, n.s.). Conclusions: Increased length of inpatient care was observed after the PCPC intervention. This could reflect an increased focus on the unmet needs of persons with serious psychotic conditions, but it needs to be explored in future research using a more rigorous study design. Trial registration: This study is part of a larger evaluation of Person-Centered Psychosis Care (PCPC), registered during data collection (after the study start, before analysis) at clinicaltrials.gov, identifier NCT03182283.
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| 22. |
- Allerby, Katarina, 1980, et al.
(author)
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Increasing person-centeredness in psychosis inpatient care: staff experiences from the Person-Centered Psychosis Care (PCPC) project
- 2022
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In: BMC Health Services Research. - : Springer Science and Business Media LLC. - 1472-6963. ; 22:1
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Journal article (peer-reviewed)abstract
- Background: Interventions to increase person-centeredness in hospital care for persons with psychotic illness are needed. Changing care delivery is however a complex venture, requiring staff to reconsider their mindsets and ways of working. A multidisciplinary educational intervention for hospital staff at four wards was launched to increase person-centeredness in the care of patients with schizophrenia and similar psychoses. This study aims to explore staff experiences of working to increase person-centeredness. Methods: A heterogenic sample of staff (n = 23) from all participating wards were recruited for six focus group interviews. Semi-structured questions covered staff perceptions of person-centered care and the process of increasing person-centeredness. Transcribed data was analyzed using thematic analysis according to Braun and Clarke. Results: Staff viewed person-centered care as an approach rather than a method. They described central aspects of person-centered care, such as recognizing the patient as a capable person who can participate in her/his care. Statements further showed how these core features were put into practice. Changes related to the intervention were presented in terms of evolving patient and staff roles, improved contact with patients, more flexible care routines, and a more positive ward climate. Neither psychotic symptoms nor involuntary status were considered barriers for person-centered care, but organizational factors beyond staff control seemed to impact on implementation. Conclusions: After implementation, participants displayed good understanding of the core concepts of person-centered care in both thinking and action. They attributed several improvements in the care milieu to an increased level of person-centeredness. Psychotic behavior and involuntary treatment did not present major barriers to person-centered care. Findings suggest person-centered care is feasible in the psychosis inpatient setting and could improve quality of care.
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| 23. |
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| 24. |
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| 25. |
- Allerby, Katarina, 1980, et al.
(author)
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Person-Centered Psychosis Care (PCPC) In An Inpatient Setting : Ward Level Data And Staff Workload
- 2019
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In: Schizophrenia Bulletin. - : Oxford University Press. - 0586-7614 .- 1745-1701. ; 45:Supplement 2, s. S304-S304
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Journal article (peer-reviewed)abstract
- Background: The person-centered care approach has been little tested in inpatient settings for persons with schizophrenia. An intervention, PersonCentered Psychosis Care (PCPC), was created to increase person-centered care through an educational intervention for staff. The education had a participatory approach where participants were involved in shaping the education and creating projects aimed at care development. The PCPC intervention focused on the patient’s narrative, the creation of a partnership between the patient and staff, and on coming to an agreement between the patient and staff concerning the care. The present study aims to compare staff experienced workload and ward level data before and after implementation of the intervention.Methods: The study was carried out on 4 hospital wards (43 beds) at the Psychosis Clinic, Gothenburg, Sweden. Data was collected during a 6-month pre-intervention period, followed by an implementation period of 3 years, and finally a post intervention data collection period (9 months). During both data collection periods, one nurse per ward filled out a measure of daily subjective workload (a VAS scale with 0 indicating no burden at all and 10 indicating the highest imaginable burden). Additional ward level data (length of hospital stay, involuntary interventions, rehospitalization rates) were collected via the clinic’s electronic monitoring system.Results: The pre-intervention ratings (n=505) showed a mean subjective workload of 5.48 (SD=1.94). The post intervention workload (n=465) showed a mean of 4.51 (SD=2.08) which represents a significant reduction of experienced workload (t (968) = p <.0005). Analyses regarding length of hospital stay, involuntary interventions, and rehospitalization rates are underway and will be presented.Discussion: The findings indicate an improvement in the work environment for hospital staff and provide a quantitative result in line with staff experiences previously reported in our focus group study. The before and after design has its limitations, but the positive findings motivate further testing with a more rigorous design such as a cluster randomized study.
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| 26. |
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| 27. |
- Allerby, Katarina, 1980, et al.
(author)
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Striving for a more person-centered psychosis care: results of a hospital-based multi-professional educational intervention
- 2020
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In: BMC Psychiatry. - : Springer Science and Business Media LLC. - 1471-244X. ; 20
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Journal article (peer-reviewed)abstract
- Background: Reluctance on the part of mental health professionals constitutes an important barrier to patient participation in care. In order to stimulate person-centeredness in the inpatient care of persons with psychotic illness, we developed and tested an educational intervention for hospital staff (including psychiatrists) at all four wards at the Psychosis Clinic, Sahlgrenska University Hospital in Gothenburg, Sweden. The intervention was co-created by professionals, patients, and researchers using a participatory approach. In addition to lectures and workshops, staff created and implemented small projects to increase person-centeredness on their own wards. A primary focus was to establish a partnership between patient and staff by capturing and utilizing the patient's narrative to support active engagement in the care process. This included the development of a person-centered care plan. We hypothesized that the intervention would be associated with increased patient empowerment (primary outcome) and satisfaction with care (secondary outcome). Methods: A before and after design was used to test group differences in patient empowerment (Empowerment Scale) and consumer satisfaction (UKU-ConSat Rating Scale). All patients receiving inpatient psychosis care during measuring periods were eligible if meeting inclusion criteria of schizophrenia spectrum disorder, age > 18, and ability to comprehend study information. Severe cognitive deficit and inadequate Swedish language skills were exclusion criteria. Data on possible confounding variables including overall health (EQ-5D), symptom burden (PANSS), and functional ability (GAF) were collected alongside outcome measures. Results: ANCOVAs with overall health as a confounding variable showed no group differences regarding empowerment before (n = 50) versus after (n = 49) intervention, sample mean = 2.87/2.99, p = .142, eta(2) = .02, CI = -.27-.04. Consumer satisfaction (n = 50/50) was higher in the post-implementation group (4.46 versus 11.71, p = .041 eta(2) = .04, CI = -14.17- -.31). Conclusion: The hypothesis regarding the primary outcome, empowerment, was not supported. An increase in the secondary outcome, satisfaction, was observed, although the effect size was small, and results should be interpreted with caution. Findings from this staff educational intervention can inform the development of future studies aimed at improvement of inpatient care for persons with severe mental illness.
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| 28. |
- Alsén, Sara, et al.
(author)
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Effectiveness of a person-centred eHealth intervention in reducing symptoms of burnout in patients with common mental disorders - secondary outcome analysis of a randomized controlled trial
- 2023
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In: Bmc Primary Care. ; 24:1
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Journal article (peer-reviewed)abstract
- Background The number of people with common mental disorders (CMDs), especially stress-related disorders, has increased in several countries, including Sweden, during the past decade. Patients seeking care for long-term stress report severe symptoms. Although person-centred care (PCC) has shown several benefits, studies evaluating the effects of a PCC eHealth intervention on patients with CMDs are scarce.Objective The aim of this study was to compare levels of self-reported symptoms of burnout between a control group receiving treatment as usual (TAU) and an intervention group receiving TAU with the addition of a person-centred eHealth intervention, in patients on sick leave for CMDs.Methods This study reports analysis of a secondary outcome measure from a randomized controlled trial. Patients (n = 209) on sick leave for CMDs were recruited from nine primary health care centres and allocated to either a control group (n = 107) or an intervention group (n = 102). The intervention consisted of phone support and an interactive digital platform built on PCC principles. Self-reported symptoms of burnout were assessed using the Shirom-Melamed Burnout Questionnaire (SMBQ) at baseline and at 3 and 6 months.Results Our findings showed changes in SMBQ scores over time in both the control and the intervention group. There was no significant difference in SMBQ scores between the groups; however, a difference in change over time between the groups was observed. The SMBQ scores decreased significantly more in the intervention group than in the controls between 0 and 3 months and between 0 and 6 months. No differences in change between the two groups were seen between the 3- and 6-month follow-ups.Conclusion This person-centred eHealth intervention for patients on sick leave for CMDs showed a slight initial effect in reducing symptoms of burnout. Taking into account that both groups reported comparable SMBQ scores throughout the study period, the overall effect may be considered limited.
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| 29. |
- Alsén, Sara, et al.
(author)
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Facing a blind alley - Experiences of stress-related exhaustion: a qualitative study
- 2020
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In: BMJ Open. - : BMJ. - 2044-6055. ; 10:9
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Journal article (peer-reviewed)abstract
- INTRODUCTION: Mental illness is a major concern in many countries. In Sweden, stress-related mental illness is currently the most frequent reason for sick leave. OBJECTIVE: This study aimed to explore patients' experiences of stress-related exhaustion. DESIGN: A qualitative study with interview data analysed using a phenomenological hermeneutic method. SETTING: Participants were selected from public primary healthcare centres in a larger city in western Sweden. PARTICIPANTS: Seven women and five men on sick leave from work due to stress-related exhaustion were included in the study. FINDINGS: Stress-related exhaustion was experienced as a loss of access to oneself and one's context and feelings of being trapped and lost in life. The condition had a significant impact on personal identity, raised existential issues and was interpreted as facing a blind alley. Participants described a mistaken direction in life, being forced to stop, change direction and act differently. CONCLUSION: Stress-related exhaustion is a challenging, life-changing existential experience that involves a crisis with an opportunity for new insights. Careful consideration of patients' narratives together with the expertise of healthcare professionals can be combined to improve health and optimise recovery based on individual's situation.
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| 30. |
- Alsén, Sara, et al.
(author)
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Having allies—Experiences of support in people with stress-related exhaustion: A qualitative study
- 2022
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In: Plos One. - : Public Library of Science (PLoS). - 1932-6203. ; 17
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Journal article (peer-reviewed)abstract
- Background The number of people seeking care for symptoms of exhaustion and stress is a major concern in several countries. The condition is a challenging and life-changing experience, and a deeper understanding of support to help people on sick leave due to stress-related exhaustion in their early stages is needed to facilitate recovery. Objective The aim was to explore experiences of support in people with stress-related exhaustion being on sick-leave less than six months. Method A qualitative interview study was conducted with 12 participants (7 women and 5 men; aged 25–46 years) who were on sick leave that had not exceeded six months due to stress-related exhaustion. The participants were recruited from public healthcare centres in the western part of Sweden, and the intention was to reach them early in their ongoing sick leave period. The interviews were performed face-to-face and analysed using a phenomenological hermeneutical approach. Results The findings show that people affected by stress-related exhaustion struggle to maintain their dignity and define support in terms of allies who acknowledge their personhood and provide them helpful guidance. Participants expressed their needs to be taken seriously by professionals, family, and friends willing to engage in their situation. Lack of empathy and professional knowledge in the clinical encounter induced additional stress. Conclusions This study indicates that people affected by stress-related exhaustion need allies from their surrounding networks in their struggle to maintain their dignity. Our findings highlight that it is essential to acknowledge them as persons and establish an alliance to provide appropriate support based on each person’s specific situation, needs and resources. This approach can be facilitated in a partnership, as emphasized in person-centred care (PCC). PCC emphasizes the co-creation of care in partnership between the patient (often with relatives) and health care professionals which may imply a more collaborative view of health care in which patients are engaged as active partners in planning their care.
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| 31. |
- Barenfeld, Emmelie, 1981, et al.
(author)
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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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In: PloS one. - : Public Library of Science (PLoS). - 1932-6203. ; 15:11
-
Journal article (peer-reviewed)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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| 32. |
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| 33. |
- Barenfeld, Emmelie, 1981, et al.
(author)
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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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In: Bmc Health Services Research. - : Springer Science and Business Media LLC. - 1472-6963. ; 22:1
-
Journal article (peer-reviewed)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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| 34. |
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| 35. |
- Blanck, Elin, et al.
(author)
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Informal carers in Sweden - striving for partnership
- 2021
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In: International Journal of Qualitative Studies on Health and Well-being. - : Taylor & Francis. - 1748-2623 .- 1748-2631. ; 16:1
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Journal article (peer-reviewed)abstract
- Informal carers have an important role in society through their care and support of their long-term ill relatives. Providing informal care is challenging and can lead to caregiver burden
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| 36. |
- Blanck, Elin, et al.
(author)
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Self‐efficacy and healthcare costs in patients with chronic heart failure or chronic obstructive pulmonary disease
- 2023
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In: ESC Heart Failure. - 2055-5822.
-
Journal article (peer-reviewed)abstract
- Abstract Aims This study aims to explore possible associations between self‐efficacy and healthcare and drug expenditures (i.e. direct costs) in patients with chronic heart failure (CHF) or chronic obstructive pulmonary disease (COPD) in a study investigating the effects of person‐centred care delivered by telephone. Methods and results This exploratory analysis uses data from an open randomized controlled trial conducted between January 2015 and November 2016, providing remote person‐centred care by phone to patients with CHF, COPD, or both. Patients hospitalized due to worsening of CHF or COPD were eligible for the study. Randomization was based on a computer‐generated list, stratified for age ≥ 75 and diagnosis. At a 6 month follow‐up, 118 persons remained in a control group and 103 in an intervention group. The intervention group received person‐centred care by phone as an addition to usual care. Trial data were linked to register data on healthcare and drug use. Group‐based trajectory modelling was applied to identify trajectories for general self‐efficacy and direct costs. Next, associations between self‐efficacy trajectories and costs were assessed using regression analysis. Five trajectories were identified for general self‐efficacy, of which three indicated different levels of increasing or stable self‐efficacy, while two showed a decrease over time in self‐efficacy. Three trajectories were identified for costs, indicating a gradient from lower to higher accumulated costs. Increasing or stable self‐efficacy was associated with lower direct costs ( P = 0.0013). Conclusions The findings show that an increased or sustained self‐efficacy is associated with lower direct costs in patients with CHF or COPD. Person‐centred phone contacts used as an add‐on to usual care could result in lower direct costs for those with stable or increasing self‐efficacy.
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| 37. |
- Boström, Eva, et al.
(author)
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Registered nurses' experiences of communication with patients when practising person-centred care over the phone: a qualitative interview study
- 2020
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In: Bmc Nursing. - : Springer Science and Business Media LLC. - 1472-6955. ; 19:1
-
Journal article (peer-reviewed)abstract
- Background To explore registered nurses' (RNs') experiences of practising person-centred care (PCC) by telephone with people diagnosed with chronic obstructive pulmonary disease and/or chronic heart failure. Methods Qualitative interview study. Four RNs were individually interviewed before, during, and after participating in an intervention practising PCC by telephone. The interviews were analysed using qualitative content analysis. Results The results reflect three categories of their experience: realize the complexity of practising PCC by distance, gain insight into what PCC communication meant to RNs and their approach, and develop the professional role by practising PCC theory and ethics. Conclusions PCC over the telephone facilitate healthcare and support patients. Through careful listening, the RNs (1) created space for the individual patients to express their thoughts and feelings and (2) emphasized each patient's capabilities and resources. The RNs also gained an understanding of PCC and what it means to patients and to themselves as practitioners. Potential implications are that it is important for RNs practising PCC by telephone to remould their role, to listen carefully, and to communicate as equals in conversations that respect both parties' knowledge and expertise. Health professionals need supervision and support to fully understand the person-centred approach and provide communications that support it.
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| 38. |
- Cederberg, Matilda, et al.
(author)
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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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In: Bmc Health Services Research. ; 23:1
-
Journal article (peer-reviewed)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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| 39. |
- Cederberg, Matilda, et al.
(author)
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Effects of a Person-Centered eHealth Intervention for Patients on Sick Leave Due to Common Mental Disorders (PROMISE Study): Open Randomized Controlled Trial
- 2022
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In: Jmir Mental Health. - : JMIR Publications Inc.. - 2368-7959. ; 9:3
-
Journal article (peer-reviewed)abstract
- Background: Sick leave due to common mental disorders (CMDs) is a public health problem in several countries, including Sweden. Given that symptom relief does not necessarily correspond to return to work, health care interventions focusing on factors that have proven important to influence the return to work process, such as self-efficacy, are warranted. Self-efficacy is also a central concept in person-centered care. Objective: The aim of this study is to evaluate the effects of a person-centered eHealth intervention for patients on sick leave due to CMDs. Methods: A randomized controlled trial of 209 patients allocated to either a control group (107/209, 51.2%) or an intervention group (102/209, 48.8%) was conducted. The control group received usual care, whereas the intervention group received usual care with the addition of a person-centered eHealth intervention. The intervention was built on person-centered care principles and consisted of telephone support and a web-based platform. The primary outcome was a composite score of changes in general self-efficacy (GSE) and level of sick leave at the 6-month follow-up. An intention-to-treat analysis included all participants, and a per-protocol analysis consisted of those using both the telephone support and the web-based platform. Results: At the 3-month follow-up, in the intention-to-treat analysis, more patients in the intervention group improved on the composite score than those in the control group (20/102, 19.6%, vs 10/107, 9.3%; odds ratio [OR] 2.37, 95% CI 1.05-5.34; P=.04). At the 6-month follow-up, the difference was no longer significant between the groups (31/100, 31%, vs 25/107, 23.4%; OR 1.47, 95% CI 0.80-2.73; P=.22). In the per-protocol analysis, a significant difference was observed between the intervention and control groups at the 3-month follow-up (18/85, 21.2%, vs 10/107, 9.3%; OR 2.6, 95% CI 1.13-6.00; P=.02) but not at 6 months (30/84, 35.7%, vs 25/107, 23.4%; OR 1.8, 95% CI 0.97-3.43; P=.06). Changes in GSE drove the effects in the composite score, but the intervention did not affect the level of sick leave. Conclusions: A person-centered eHealth intervention for patients on sick leave due to CMDs improved GSE but did not affect the level of sick leave.
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| 40. |
- Cederberg, Matilda, et al.
(author)
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Person-centred eHealth intervention for patients on sick leave due to common mental disorders: study protocol of a randomised controlled trial and process evaluation (PROMISE)
- 2020
-
In: BMJ Open. - : BMJ. - 2044-6055. ; 10:9
-
Journal article (peer-reviewed)abstract
- INTRODUCTION: The number of people dealing with common mental disorders (CMDs) is a major concern in many countries, including Sweden. Sickness absence resulting from CMDs is often long-lasting and advancing return to work is a complex process impacted by several factors, among which self-efficacy appears to be an important personal resource. Person-centred care (PCC) has previously shown positive effects on self-efficacy however this needs to be further investigated in relation to patients with CMDs and in an eHealth context. METHODS AND ANALYSIS: This study is an open randomised controlled trial comparing a control group receiving standard care with an intervention group receiving standard care plus PCC by telephone and a digital platform. The primary outcome measure is a composite score of changes in sick leave and self-efficacy. Participants will include 220 primary care patients on sick leave due to CMDs and data will mainly be collected through questionnaires at baseline and 3, 6, 12 and 24 months from the inclusion date. Inclusion is ongoing and expected to be completed during the fall of 2020. A process and health economic evaluation will also be conducted. ETHICS AND DISSEMINATION: This study was approved by the Regional Ethical Review Board in Gothenburg, Sweden. Results will be published in peer-reviewed scientific journals and presented at national and international scientific conferences. This project is part of a broader research programme conducted at the Gothenburg Centre for Person-Centred Care (GPCC), where extensive work is undertaken to disseminate knowledge on and implementation of PCC. TRIAL REGISTRATION NUMBER: NCT03404583.
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| 41. |
- Cederberg, Matilda, et al.
(author)
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The interactive work of narrative elicitation in person-centred care: Analysis of phone conversations between health care professionals and patients with common mental disorders
- 2022
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In: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 25:3, s. 971-983
-
Journal article (peer-reviewed)abstract
- Introduction Narratives play a central part in person-centred care (PCC) as a communicative means of attending to patients' experiences. The present study sets out to explore what activities are performed and what challenges participants face in the interactive process of narrative elicitation, carried through in patient-professional communication in a remote intervention based on PCC. Methods Data were gathered from a randomized controlled trial (RCT) in a Swedish city where health care professionals (HCPs) conducted remote PCC for patients on sick leave due to common mental disorders. A sample of eleven audio-recorded phone conversations between HCPs and patients enroled in the RCT were collected and subjected to conversation analysis. Results Three interactive patterns in narrative elicitation were identified: Completed narrative sequences driven by the patient, question-driven narrative sequences guided by the HCP, and narrative sequences driven as a collaborative project between the patient and the HCP. In the question-driven narrative sequences, communication was problematic for both participants and they did not accomplish a narrative. In the other two patterns, narratives were accomplished but through various collaborative processes. Conclusion This study provides insight into what challenges narrative elicitation may bring in the context of a remote PCC intervention and what interactive work patients and HCP need to engage in. Importantly, it also highlights tensions in the ethics of PCC and its operationalization, if the pursuit of a narrative is not properly balanced against the respect for patients' integrity and personal preferences. Our findings also show that narrative elicitation may represent an interactive process in PCC in which illness narratives are jointly produced, negotiated and transformed. Patient or Public Contribution Stakeholders, including patient representatives, were involved in the design of the main study (the RCT). They have been involved in discussions on research questions and dissemination throughout the study period. They have not been involved in conducting the present study.
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| 42. |
- Elf, Mikael, 1959, et al.
(author)
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Design of Web-based Support Systems in Less Structured Contexts - the Case of Young Carers.
- 2011
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In: Medicine 2.0 Congress, Sept 17-18 2011, Stanford University, US..
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Conference paper (peer-reviewed)abstract
- Background It has been suggested that at least 4% in a given population of young people are young carers (YC), providing substantial support to diseased family members. Many of them have little or no help from society, partly due to societal neglect of this group and partly due to barriers for help seeking, such as shame, stigma and distrust in health and social care resources (HSCR). The group addressed in this abstract, YCs aged 16-25 and supporting someone with mental illness, may find those barriers even more constricting. Research on web-based support for this group are limited, although web-based support may have a prominent role to play in reaching and supporting them. However, web-based support systems (WBSS) are often built around an educational part and a peer-support part, while a number of recent studies of ICT-support to homeless people, at-risk teens and YCs point to additional needs not addressed in such supports. A common factor among these groups seems to be a lack of support in their life context and at the same time barriers to reach important HSCRs. Our objective is to outline a model for web-based support aiming to increase YCs' opportunities and willingness to overcome barriers in reaching HSCRs that they need. Methods Data from two qualitative studies has been used. Study one was based on interview data (N=12) and explored YCs' needs in their care situation and in relation to a hypothesized WBSS. Data was transcribed and analyzed with content analysis. Study 2 explored YCs' views (N=8) of a WBSS when acting as co-designers in a participatory design (PD) process. Five consecutive design meetings were video recorded and analyzed with content analysis. Results 1) In addition to needs of knowledge (e.g. for understanding mental illness) and needs for communication (e.g. with peers having similar experiences), YCs wanted the opportunity to meet peers in real life and to get “real-life” support. Important real-life support could be e.g. acute relief in the care situation and structured family interventions. Young carers also expressed need for greater commitment from HSCRs. 2) Young carers emphasized human qualities of the WBSS (personification), like competence and a serious attitude. They indicated the importance of commitment and sensitivity in any action on the WBSS. The website was viewed not only as a source for information, knowledge and exchange, but also as something to relate to and trust. Conclusions Localization, mediation and personification may be important properties of a WBSS aimed at YCs. A locally anchored WBSS could facilitate real-life connections between YCs (observing security issues) and would be a prerequisite in helping YCs to become familiar with HSCRs in their place of living. A dedicated staff can build relations to and explore local HSCRs and mediate these experiences on the WBSS. A personified WBSS may offer not only increased visibility, transparency and familiarity of HSCRs, but also trust and support for YCs to overcome barriers in reaching HSCRs.
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| 43. |
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| 44. |
- Engström, Ingemar, 1952-, et al.
(author)
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Relational continuity may give better clinical outcomes in patients with serious mental illness - a systematic review
- 2023
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In: BMC Psychiatry. - : BioMed Central (BMC). - 1471-244X. ; 23:1
-
Research review (peer-reviewed)abstract
- BackgroundContinuity of care is considered important for results of treatment of serious mental illness (SMI). Yet, evidence of associations between relational continuity and different medical and social outcomes is sparse. Research approaches differ considerably regarding how to best assess continuity as well as which outcome to study. It has hitherto been difficult to evaluate the importance of relational continuity of care. The aim of this systematic review was to investigate treatment outcomes, including effects on resource use and costs associated with receiving higher relational continuity of care for patients with SMI.MethodsEleven databases were searched between January 2000 and February 2021 for studies investigating associations between some measure of relational continuity and health outcomes and costs. All eligible studies were assessed for study relevance and risk of bias by at least two independent reviewers. Only studies with acceptable risk of bias were included. Due to study heterogeneity the synthesis was made narratively, without meta-analysis. The certainty of the summarized result was assessed using GRADE. Study registration number in PROSPERO: CRD42020196518.ResultsWe identified 8 916 unique references and included 17 studies comprising around 300 000 patients in the review. The results were described with regard to seven outcomes. The results indicated that higher relational continuity of care for patients with serious mental illness may prevent premature deaths and suicide, may lower the number of emergency department (ED) visits and may contribute to a better quality of life compared to patients receiving lower levels of relational continuity of care. The certainty of the evidence was assessed as low or very low for all outcomes. The certainty of results for the outcomes hospitalization, costs, symptoms and functioning, and adherence to drug treatment was very low with the result that no reliable conclusions could be drawn in these areas.ConclusionsThe results of this systematic review indicate that having higher relational continuity of care may have beneficial effects for patients with severe mental illness, and no results have indicated the opposite relationship. There is a need for better studies using clear and distinctive measures of exposure for relational continuity of care.
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| 45. |
- Eriksson-Liebon, Magda, 1986-
(author)
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The effects and experiences of internet-delivered cognitive behavioural therapy : The perspectives of patients with non-cardiac chest pain and healthcare professionals in the emergency and cardiac care
- 2024
-
Doctoral thesis (other academic/artistic)abstract
- BackgroundNon-cardiac chest pain (NCCP) is a common issue, accounting for roughly half of all emergency department visits related to chest pain. Patients afflicted with NCCP often endure cardiac anxiety, misinterpreting the pain as heart-related and fearing it, despite the absence of any life-threatening cardiac issues. This anxiety often leads to the avoidance of physical activities, negatively impacting their quality of life. Cognitive behavioural therapy (CBT) has been shown to be effective in managing psychological distress such as anxiety and depression. CBT is a structured process that helps patients identify and restructure their negative thoughts, get a corrected and more realistic perception of their symptoms, and learn to manage their thoughts about chest pain. Despite its effectiveness, CBT is resource-intensive, and therefore internet-delivered cognitive behavioural therapy (iCBT) may be an alternative as it increases accessibility and is more cost-effective compared to traditional therapy methods. However, there is a lack of re-search on the effectiveness of this treatment approach for patients with NCCP and cardiac anxiety. Moreover, digital care technologies are still relatively unfamiliar in clinical practice, particularly in emergency departments, and the successful implementation of iCBT relies on healthcare professionals' acceptance and integration of digital care into clinical practice. Aim The overall aim of this dissertation was to evaluate the short- and long-term effects of a nurse-led iCBT program on psychological distress in patients with NCCP, and to explore their experiences participating in the iCBT program. In addition, the study aimed to describe healthcare professionals' perceptions of digital care in the emergency and cardiac care for patients with NCCP. Methods This dissertation comprises two quantitative and two qualitative studies. A randomised clinical trial (RCT) (studies I, II, and III) was conducted to evaluate cardiac anxiety, measured with the Cardiac Anxiety Questionnaire (CAQ); and secondary outcomes such as fear of body sensations, measured with The Body Sensations Questionnaire (BSQ); depressive symptoms, assessed with the Patient Health Questionnaire-9 (PHQ-9); health-related quality of life (HRQoL), measured using the EuroQol Visual Analog Scale (EQ-VAS); and chest pain frequency with a self-developed question. The RCT cohort consisted of 109 patients who had at least two healthcare consultations for NCCP in the past 6 months, experienced cardiac anxiety (CAQ score ≥24), and were randomised into a 5-week iCBT program (n=54) or psychoeducation (n=55). An intention-to-treat analysis was conducted, and linear mixed model analysis was used to assess between-group differences in primary and secondary outcomes. The iCBT program included psychoeducation, mindfulness, and exposure to physical activity, with weekly homework assignments and feedback, while the control (psychoeducation) group received readable psychoeducation program aimed to increase knowledge about their mental health, symptoms, and the strategies that can be used to manage chest pain and improve their well-being. Study I was a short-term follow-up with a three-month duration. Study III was a longitudinal study with a 12-month follow-up. Additionally, factors impacting the treatment effect of iCBT on cardiac anxiety were also explored. Study II was a semi-structured qualitative study utilising an inductive approach with content analysis following Patton (2015). Face-to-face interviews were conducted with 16 participants from the iCBT group. Study IV was a qualitative descriptive study involving individual, digital/face-to-face semi-structured interviews with 17 licensed healthcare professionals (physicians and nurses) working in emergency care or cardiology. Data were analysed using inductive thematic analysis based on Braun and Clarke (2006). Result In Study I, no significant differences were found between the iCBT and control (psychoeducation) groups regarding cardiac anxiety or any of the secondary outcomes in terms of the interaction effect of time and group over the 3-month follow-up. iCBT demonstrated a small effect size on cardiac anxiety (Cohen’s d=0.31). A positive change score (≥11 points on the CAQ) was reported by 16 patients in the iCBT group (36%) compared to 13 patients (27%) in the control (psychoeducation) group, indicating a slightly greater improvement in cardiac anxiety in the iCBT group. However, the difference between the groups was non-significant (p=.213). Within-group analysis showed significant improvement in cardiac anxiety (p=.037) at the 3-month follow-up compared to the 5-week follow-up in the iCBT group, but not in the control (psychoeducation) group. In Study III, there was no statistically significant interaction effect of time and group between the iCBT and control (psychoeducation) groups regarding cardiac anxiety over the 12-month follow-up. However, there was a statistically significant interaction effect of time and group (p=.009) regarding chest pain frequency for the iCBT group and a group effect on health-related quality of life (p=.03) for the iCBT group. Furthermore, the regression analysis showed that higher scores of "avoidance" on the CAQ at baseline were associated with improvement in cardiac anxiety at the 12-month follow-up in both groups. In Study II, participants described their experiences, leading to three main categories: "driving factors for participation in the iCBT program", "the program as a catalyst" and "learning to live with chest pain." Participants described how pain impacted their lives, the struggle that led them to participate in the program, and how they found the program helpful, trustworthy, and viewed it as a tool for gaining the strength and skills they needed to live a normal life despite chest pain. In Study IV, healthcare professionals described their perception of digital care, resulting in four themes: "new ground to walk on”, "a challenge for the current healthcare system", "digital care has its potential" and "prerequisites for use in clinical practice". These themes describe healthcare professionals' knowledge and experience with digital care, the challenges associated with implementing digital care in the current healthcare system, the opportunities it presents, and identify facilitators for the implementation of digital care in clinical practice.ConclusionsIn studies I and III, iCBT was not superior to psychoeducation in reducing cardiac anxiety in patients with NCCP. However, both iCBT and psychoeducation have demonstrated utility as interventions for reducing cardiac anxiety in these patients. Moreover, patients with an increased propensity to avoid activities or situations they believe may trigger cardiac -related symptoms, were found to have reduced cardiac anxiety. Patients generally perceived the iCBT program positively, viewing it as a tailored and effective tool for confronting fears and restoring normalcy in their lives. Healthcare professionals express a mixture of caution and optimism towards digital care, emphasising the importance of clear leadership, education, technical competence, and positive attitudes to ensure successful implementation and maximise benefits for patients with NCCP.
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| 46. |
- Fors, Andreas, 1977, et al.
(author)
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Effects of a person-centred telephone-support in patients with chronic obstructive pulmonary disease and/or chronic heart failure - A randomized controlled trial
- 2018
-
In: PLOS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 13:8
-
Journal article (peer-reviewed)abstract
- To evaluate the effects of person-centred support via telephone in two chronically ill patient groups, chronic obstructive pulmonary disease (COPD) and/or chronic heart failure (CHF). 221 patients ≥ 50 years with COPD and/or CHF were randomized to usual care vs. usual care plus a person-centred telephone-support intervention and followed for six months. Patients in the intervention group were telephoned by a registered nurse initially to co-create a person-centred health plan with the patient and subsequently to discuss and evaluate the plan. The primary outcome measure was a composite score comprising General Self-Efficacy (GSE), re-hospitalization and death. Patients were classified as deteriorated if GSE had decreased by ≥ 5 points, or if they had been re-admitted to hospital for unscheduled reasons related to COPD and/or CHF or if they had died. At six-month follow-up no difference in the composite score was found between the two study groups (57.6%, n = 68 vs. 46.6%, n = 48
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| 47. |
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| 48. |
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| 49. |
- Goulding, Anneli, 1966, et al.
(author)
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Person-centered psychosis care (PCPC) in an inpatient setting: Patient outcomes
- 2018
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In: Schizophrenia Bulletin. 44 (suppl 1), S426. - : Oxford University Press (OUP). - 0586-7614 .- 1745-1701.
-
Conference paper (peer-reviewed)abstract
- Background The person-centered care approach has been little tested in inpatient settings for persons with schizophrenia and similar psychoses. We developed a staff educational intervention, Person-Centered Psychosis Care (PCPC) tailored to our care setting (4 hospital wards for persons with psychoses, 43 beds). The intervention was co-created by professionals, patients, and researchers using a participatory approach. There was a focus on the patient’s narrative, the creation of partnership between staff and patient, an agreement between staff and patient concerning care, and a bridging of inpatient and outpatient care and support. The present study aims to describe patient outcomes associated with PCPC. Methods The study had a before and after design. Before the PCPC intervention started, questionnaire data was collected from 50 inpatients shortly before discharge. Post intervention data are currently under collection (anticipated n=50). The primary outcome measure is self-reported empowerment (Empowerment Scale, Range 0–112) and the secondary measure is consumer satisfaction (UKU-ConSat Rating Scale, converted to range between 11 and 77). Participants also complete questionnaires related to possible confounding variables such as overall health (EQ-5D), symptom burden (PANSS), and functional ability (GAF). Results The participants (46% women) included in the pre-intervention sample had a mean age of 47.5 years (SD=14.5). The total mean empowerment score for the pre-intervention sample was 82.6 (SD=8.1) whereas the mean consumer satisfaction score was 51.5 (SD=12.9). There were no statistically significant gender differences regarding empowerment or consumer satisfaction. There were no significant correlations between age, any of the confounding variables, and empowerment and consumer satisfaction. We will present results from comparisons between the pre- and post-intervention groups regarding empowerment and consumer satisfaction. Discussion The before and after design has its limitations, but if the PCPC intervention proves beneficial, such a model could be tested with a cluster randomized study design.
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| 50. |
- Goulding, Anneli, 1966, et al.
(author)
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Person Centred Psychosis Care (PCPC) in an Inpatient Setting: The Implementation Process and Staff Experiences.
- 2016
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In: Npj Schizophrenia. - 2334-265X.
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Conference paper (other academic/artistic)abstract
- Background: Persons with schizophrenia-spectrum disorders might benefit from increased involvement in the care process. To this end, integrated care models have been successfully implemented in outpatient settings. We wanted to develop an inpatient care model inspired by integrated care. Further, we wanted to include central components of person-centred care (asdefined by the Gothenburg Centre for Person-Centred Care) including a focus on the patient's narrative, the creation of partnership between staff and patient, and an agreement between staff and patientconcerning the care. The present research project, Person Centred Psychosis Care (PCPC), aims to develop, implement, and evaluate an inpatient care approach that utilizes aspects of integrated care as well as person-centred care. In the present study we will describe the PCPC staff educational intervention, the implementation process that followed, and staff experiences of the intervention and implementation. Methods: Emplyoing a participatory design, the PCPC staff educational intervention involved one third (n=40) of the staff working at four wards at a clinic providing inpatient care for persons with schizophrenia-spectrum disporders. Facilitators with previous experience in the implementation of person-centred care in somatic settings served as coaches. During six full day workshop, staff learned to apply theoretical concepts of both integrated care and person-centred care to their everyday ward situation and worked in groups to develop ward-level projects with the aim of stimulating patient involvement. Service users took part in the educational intervention. Staff who participated in the educational intervention transferred their new approaches to care tasks. This means that all ward staff became involved in the implementation process. Results A purposeful sample of staff memebers (both with and without course participation, n=20) were asked to praticipate in focus group interviews to relate their experiences of the PCPC staff educational intervention, the transfer to those staff memebers who did not take the course, and of recorded, transcribed verbatim, and thematically analyzed. Results regarding the implementation process will be presented, with a focus on barriers and facilitators to change. Discussion: Findings from the focus group interviews will shed light on staff members' experiences of the education intervention, as well as the experiences of staff memebers who participated in transfer activities but not in the course itself. It is our expectation that the participatory design will facilitate long lasting behaviour change in staff, resulting in patients feeling more involved in their care. Future studies will report on patient outcomes (empowerment and care satisfaction) as well as ward level outcomes. If the PCPC-intervention shows positive outcomes for patients and staff, it might be a model that other psychiatric care providers can use to enhance patient involvemebt and satisfaction with care.
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