| 1. |
- 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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| 2. |
- 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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| 3. |
- 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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| 4. |
- 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
- 2014
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Ingår i: Patient Education and Counseling. - Shannon, Irland : Elsevier BV. - 0738-3991 .- 1873-5134. ; 94:3, s. 362-371
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Tidskriftsartikel (refereegranskat)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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| 5. |
- Ali, Lilas, et al.
(författare)
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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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Konferensbidrag (refereegranskat)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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| 6. |
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| 7. |
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| 8. |
- Ali, Lilas, 1981, et al.
(författare)
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Support for young informal carers of persons with mental illness : A mixed-method study
- 2013
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Ingår i: Issues in Mental Health Nursing. - New York : Informa UK Limited. - 0161-2840 .- 1096-4673. ; 34:8, s. 611-618
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Tidskriftsartikel (refereegranskat)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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| 9. |
- Ali, Lilas, et al.
(författare)
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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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Ingår i: 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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Konferensbidrag (refereegranskat)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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| 10. |
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| 11. |
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| 12. |
- Alwin, Jenny, 1978-
(författare)
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Assessment of Support Interventions in Dementia : Methodological and Empirical Studies
- 2010
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Dementia means a continuous deterioration of abilities and has a large impact on the persons affected as well as on family members and others close to the persons with dementia. Interventions aimed at this population in order to support and alleviate the often straining situation may be of great importance. There is a need to increase the knowledge and understanding of the impact and consequences of these interventions, both at an individual level and at a societal level. The demand for information concerning, e.g., economic and medical impact of technologies and interventions within health care is increasing. Assessment of technologies and interventions in dementia is related to certain methodological issues. The overall aim of this thesis is to contribute to the development of methodological knowledge concerning assessment studies and understanding of support interventions in dementia.This thesis work includes four studies that examine methodological aspects of assessment of support interventions in dementia and also report empirical research on the perception of support interventions from the perspectives of family caregivers of persons with dementia. In study I, an assessment model for assistive technology (AT) interventions in dementia was developed. In study II, part of the assessment model is applied, and a process evaluation of the AT intervention is presented. Study III examines family caregivers’ perception of the importance of different types of support and services. In the final study, study IV, a well‐acknowledged methodological challenge within the field of assessment in dementia is addressed: measuring health‐related quality of life (HRQoL). The studies are based on different data materials.An assessment model of AT interventions was developed that includes health economic evaluation from a societal perspective as well as evaluation of the intervention process. The perspectives of both persons with dementia and their relatives were incorporated in the model. The process evaluation was applied in study II in order to study the relatives’ perception of an AT intervention process. Assistive technology interventions in dementia may be of great significance for the relatives. By performing the process evaluation, several important aspects that need to be acknowledged in AT intervention processes in dementia were identified.Family caregivers of persons with dementia perceived different types of support/services within the comprehensive areas of counselling, relief and information as very important. Knowledge of the caregivers’ preferences is significant so that more directed support interventions may be provided.One specific methodological issue was addressed in study IV. The results of study IV showed that there were large differences in the results of cost‐effectiveness analyses depending on whether patient self‐ratings or proxy ratings (ratings of persons close to the patient) of patient HRQoL were used for the same analysis. These differences in the results could ultimately have an important impact on decision making and resource allocation.Support interventions aimed at persons with dementia and their relatives may be of great value. Conducting assessment studies of technologies and interventions within health care is important in order to increase the knowledge concerning, e.g., economic and medical impact. Assessment studies of support interventions dementia entails methodological issues that need to be addressed. There is a need for increased knowledge within this field and suggestions on methodology are made.
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| 13. |
- Alwin, Jenny, 1978-, et al.
(författare)
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Health economic and process evaluation of AT interventions for persons with dementia and their relatives - A suggested assessment model
- 2007
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Ingår i: Technology and Disability. - 1055-4181. ; 19:2-3, s. 61-71
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Tidskriftsartikel (refereegranskat)abstract
- There is growing interest in assistive technology (AT) as a means of enabling participation in everyday activities for persons with dementia and their relatives. Health economic assessment of AT in dementia is of importance due to the consequences of the disease for both patients and relatives and to the high societal costs for dementia care. The aim of this article is to outline a model for assessment of AT interventions for persons with dementia. The model expands existing assessment models as it also includes evaluation of the intervention process. Methodological challenges and possibilities in making health economic assessments, including outcomes and costs, as well as process evaluation, are discussed in the article. © 2007 IOS Press. All rights reserved.
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| 14. |
- Alwin, Jenny, 1978-, et al.
(författare)
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Perception and significance of an assistive technology intervention - the perspectives of relatives of persons with dementia
- 2013
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Ingår i: Disability and Rehabilitation. - : Informa Healthcare. - 0963-8288 .- 1464-5165. ; 35:18, s. 1519-1526
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: The aim of this study was to examine relatives' perception of an assistive technology intervention aimed at persons with dementia (PwDs) and their relatives, and to examine whether, and how, experiences of the intervention process differed between relatives valuing the intervention to be of high, and relatives perceiving it to be of low significance. Method: A total of 47 relatives of PwDs within the Swedish Technology and Dementia project were interviewed telephonically using a modified version of the Patient perspective on Care and Rehabilitation process instrument. A total of 46 participants were divided into two groups depending on whether they valued the intervention to be of great significance (GS group; N = 33) or of some/no significance (SNS group; N = 13). Results: Several aspects of the intervention were perceived as highly important, e.g. being shown consideration and respect, and having somewhere to turn. The results indicate that relatives in the GS group perceived certain aspects of the intervention process as highly fulfilled to a larger extent than did relatives in the SNS group. Conclusions: This study illustrates how process evaluations can be used to increase the understanding and to identify improvement aspects of interventions.
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| 15. |
- Alwin, Jenny, et al.
(författare)
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Support/services among family caregivers of persons with dementia - perceived importance and services received
- 2010
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Ingår i: International Journal of Geriatric Psychiatry. - : John Wiley & Sons, Ltd.. - 0885-6230 .- 1099-1166. ; 25, s. 240-248
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Tidskriftsartikel (refereegranskat)abstract
- Conclusion: The results from this study suggest that there is almost no difference between groups of caregivers experiencing higher and lower NI regarding their perception of what are important types of support/services. The caregivers rated different types of support/services within the areas of information, relief and counselling as very important.
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| 16. |
- Alwin, Jenny, 1978-, et al.
(författare)
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Teknik för personer med demens : En utvärderingsstudie av teknikintervention för personer med demenssjukdom och deras närstående
- 2008
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Rapport (övrigt vetenskapligt/konstnärligt)abstract
- Denna rapport är framtagen av Centrum för utvärdering av medicinsk teknologi (CMT), Institutionen för medicin och hälsa, vid Linköpings universitet på uppdrag av Hjälpmedelsinstitutet. Utvärderingsstudien1 som presenteras i rapporten har gjorts av en intervention som utvecklats inom ramen för projektet ”Teknik och Demens”.Författarna till rapporten vill tacka medarbetare i Teknik och Demensprojektet:Arbetsterapeuter på de kliniska enheterna: Barbro Askenborg, Carina Boström, Ulla Haraldson, Malin Lundberg, Anna Rosshagen, Sofia Starkhammar samt Inger Lindblad från Stockholms sjukhem och Margret Rosenberg från Arbetsterapeuterna primärvården Gästrikland.Medarbetare på FoU-enheterna: Ulla Johansson, Staffan Josephsson och Åke Seiger.Projektledningsgruppen: Susann Forsberg och Ingela Månsson från Hjälpmedelsinstitutet, Inge Dahlenborg från Demensförbundet och Kerstin Lundström från Alzheimerföreningen i Sverige.Vi vill även tacka Magnus Husberg, CMT, för konsultinsatser vad gäller analys och databehandling samt Olle Eriksson, LiU, som rådgivare vad gäller statistiska beräkningar. Tack till alla personer som bidragit med synpunkter på rapporten.Slutligen ett varmt tack till alla deltagare i Teknik och Demensprojektet som under studiens gång besvarat många frågor.Linköping 2008-04-22Jenny Alwin Jan Persson Barbro Krevers
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| 17. |
- Andersson, Kristin, et al.
(författare)
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Implementing healthy lifestyle promotion in primary care: a quasi-experimental cross-sectional study evaluating a team initiative
- 2015
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Ingår i: BMC Health Services Research. - : BioMed Central. - 1472-6963. ; 15:31
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Tidskriftsartikel (refereegranskat)abstract
- Background:Non-communicable diseases are a leading cause of death and can largely be prevented by healthy lifestyles. Health care organizations are encouraged to integrate healthy lifestyle promotion in routine care. This study evaluates the impact of a team initiative on healthy lifestyle promotion in primary care.Methods: A quasi-experimental, cross-sectional design compared three intervention centres that had implemented lifestyle teams with three control centres that used a traditional model of care. Outcomes were defined using the RE-AIM framework: reach, the proportion of patients receiving lifestyle promotion; effectiveness, self-reported attitudes and competency among staff; adoption, proportion of staff reporting regular practice of lifestyle promotion; implementation, fidelity to the original lifestyle team protocol. Data collection methods included a patient questionnaire (n = 888), a staff questionnaire (n = 120) and structured interviews with all practice managers and, where applicable, team managers (n = 8). The chi square test and problem-driven content analysis was used to analyse the questionnaire and interview data, respectively.Results:Reach: patients at control centres (48%, n = 211) received lifestyle promotion significantly more often compared with patients at intervention centres (41%, n = 169). Effectiveness: intervention staff was significantly more positive towards the effectiveness of lifestyle promotion, shared competency and how lifestyle promotion was prioritized at their centre. Adoption: 47% of staff at intervention centres and 58% at control centres reported that they asked patients about their lifestyle on a daily basis. Implementation: all intervention centres had implemented multi-professional teams and team managers and held regular meetings but struggled to implement in-house referral structures for lifestyle promotion, which was used consistently among staff.Conclusions:Intervention centres did not show higher rates than control centres on reach of patients or adoption among staff at this stage. All intervention centres struggled to implement working referral structures for lifestyle promotion. Intervention centres were more positive on effectiveness outcomes, attitudes and competency among staff, however. Thus, lifestyle teams may facilitate lifestyle promotion practice in terms of increased responsiveness among staff, illustrated by positive attitudes and perceptions of shared competency. More research is needed on lifestyle promotion referral structures in primary care regarding their configuration and implementation.
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| 18. |
- Balducci, C, et al.
(författare)
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Negative impact and positive value in caregiving : Validation of the COPE index in a six-country sample of carers
- 2008
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Ingår i: The Gerontologist. - 0016-9013 .- 1758-5341. ; 48:3, s. 276-286
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: The present study attempts to further validate the COPE Index on a large sample of carers drawn from six European countries. Design and Methods: We used a cross-sectional survey, with approximately 1,000 carers recruited in each of six countries by means of a common standard evaluation protocol. Our saturation recruitment of a designated quota of carers occurred by means of several channels, in identified geographical zones within countries. Interviews were carried out with primary informal carers by use of a common assessment tool. We subjected items of the COPE Index to principal component analysis and we assessed emergent components through the use of Cronbach's alpha reliability procedures. We examined factor components as summative scales for confirmatory correlations with caregiving and psychological variables. Results: Three components emerged, which we identified as the negative impact of caregiving, the positive value of caregiving, and the quality of support for caregiving. Internal consistency was good for negative impact and satisfactory for positive value and quality of support. Negative value was most consistently and strongly correlated with caregiving and psychological variables, although we did find diverse associations between these variables and the COPE Index subscales. Implications: The COPE Index is a brief, first-stage assessment of some sophistication that can enable health and social care professionals to develop appropriately targeted interventions to enhance the positive aspects of the caregiving experience and quality of support, as well as reduce the negative impacts of caregiving. Copyright 2008 by The Gerontological Society of America.
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| 19. |
- Bień, Barbara, et al.
(författare)
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Disabled older people’s use of health and social care services and their unmet care needs in six European countries
- 2013
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Ingår i: European Journal of Public Health. - : Oxford University Press. - 1101-1262 .- 1464-360X. ; 23:6, s. 1032-1038
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Tidskriftsartikel (refereegranskat)abstract
- Background: The national health and social care systems in Europe remain poorly integrated with regard to the care needs of older persons. The present study examined the range of health and social care services used by older people and their unmet care needs, across six European countries. Methods: Family carers of older people were recruited in six countries via a standard protocol. Those providing care for disabled older people (n = 2629) provided data on the older person’s service use over a 6-month period, and their current unmet care needs. An inventory of 21 services common to all six countries was developed. Analyses considered the relationship between older people’s service use and unmet care needs across countries. Results: Older people in Greece, Italy and Poland used mostly health-oriented services, used fewer services overall and also demonstrated a higher level of unmet care needs when compared with the other countries. Older people in the United Kingdom, Germany and Sweden used a more balanced profile of socio-medical services. A negative relationship was found between the number of different services used and the number of different areas of unmet care needs across countries. Conclusions: Unmet care needs in older people are particularly high in European countries where social service use is low, and where there is a lack of balance in the use of health and social care services. An expansion of social care services in these countries might be the most effective strategy for reducing unmet needs in disabled older people.
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| 20. |
- Blomma, Caroline, et al.
(författare)
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Important aspects of conducting an interdisciplinary public preventive oral health project for children in areas with low socioeconomic status: staff perspective
- 2020
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Ingår i: BMC Oral Health. - : BMC. - 1472-6831. ; 20:1
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Tidskriftsartikel (refereegranskat)abstract
- Background To achieve good and equal oral health in children, interdisciplinary preventive oral health actions, directed toward disadvantaged areas, can be an important means. Staff play a crucial role in the implementation of these actions. The aim of the present study was to analyze circumstances of importance for conducting an interdisciplinary public preventive oral health project for children, directed toward parents in areas with low socioeconomic status from the interdisciplinary perspective of the involved staff. Method The present study consisted of a qualitative content analysis with an inductive approach, based on interviews with interdisciplinary staff who had participated in a public preventive oral health project directed toward parents in areas with low socioeconomic status. The interviews were analyzed using text-driven analysis. Results The main category concerned the staff members prerequisites and understanding necessary to perform their tasks in interdisciplinary public preventive oral health project. To have the right prerequisites and understanding regarding the oral health project enabled staff to be committed, able and willing to perform in it. Important aspects of this are to have knowledge, motivation and to experience a supportive professional context, to have good leadership and for certain resources to fulfilled. A crucial aspect was to reach the targeted mothers. Conclusions For interdisciplinary cooperation in preventive oral health care to be achieved, it is essential for the involved disciplines and professions to embrace a common view on the projects aim, their duties, and oral health, from the leadership to the individual level. Staff require competent leadership but also allocated time and adapted method support to be successful in this context. When allocating preventive health actions directed at low SES areas, it is important to acknowledge the risk of stigmatization and for staff to understand that families might be facing social challenges that prevent them from taking part in health-promoting actions. An important conclusion is that to be able to reach people, it is important for both those who design preventive programs for oral health and the staff who administer them to have sufficient knowledge about the target group.
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| 21. |
- Broqvist, Mari, 1958-
(författare)
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Asking the public : Citizens´ views on priority setting and resource allocation in democratically governed healthcare
- 2018
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Resource allocation in publicly funded healthcare systems is inevitably linked with priority setting between different patient groups and between different service areas, so-called meso level priorities. Behind every priority-setting decision (investments, reallocating or rationing), are values affecting both the content of the decisions and how the decisions are made. The importance for priority-setting to reflect social values, has been emphasised for the legitimacy of the healthcare systems and the decision makers. Also important, if supposed to provide enough guidance in practice, is that content values, expressed in ethical principles and criteria, are further operationalised. Few studies exist where Swedish citizens have been asked about priority setting and rationing at meso level, and findings from other countries cannot automatically be transferred to the Swedish context.The overall aim of this thesis is to extend and deepen the knowledge of the Swedish citizens´ views on acceptance of rationing in healthcare, on appropriate decision makers for rationing, and on the severity criterion for priority setting. Two qualitative and one mixmethod study were conducted, where citizens were interviewed. Citizens´ views on severity were also compared, both with a Severity Framework, derived from parliamentary-decided ethical principles and used for resource allocation, and with health professionals´ and politicians´ ranking of different aspects of severity in a quantitative, survey study.Study I shows that citizen participants perceived that acceptance of rationing at meso level is built on the awareness of priority-setting dilemmas between patient groups. No such spontaneous awareness was found. Depending on reactions of self-interest or solidarity, acceptance was also perceived to be built on acceptable principles for rationing and/or access to alternatives to public care. Study II shows that awareness of the meso level forms the basis for awareness of different risks of unfairness, linked with potential decision makers (even health professionals). Collaborative arrangements were promoted in order to control for such risks, especially the risk of self-interest. Politicians, in contrast to previous studies, were favoured as final decision makers for rationing healthcare. In study III, citizen participants identified the same severity aspects as health professionals and experts had done in the Severity Framework. They contributed with some possible refinements, but also promoted aspects not in line with established ethical criteria for priority setting in Sweden. Study IV shows that citizen respondents differ to a larger proportion compared to politicians´ ranking of severity aspects, than with that of health professionals´. The greatest number of significant differences was found between politicians and health professionals.This thesis has several implications. Politicians ought to strive for greater public awareness of the priority-setting dilemma at the meso level in healthcare, both according to the process and the content values behind the decisions. Social values not in accordance to the parliamentary decision indicate a need to facilitate an ongoing dialogue, reason-giving activities and promotion of content values of solidarity. To capture social values on priority setting and rationing, ambitious public deliberation is not the only way. Methodologically stringent research, with a variety of study designs, could contribute in many important ways.
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| 22. |
- Broqvist, Mari, 1958-, et al.
(författare)
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The meaning of severity - do citizenś views correspond to a severity framework based on ethical principles for priority setting?
- 2018
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Ingår i: Health Policy. - : Elsevier. - 0168-8510 .- 1872-6054. ; 122:6, s. 630-637
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Tidskriftsartikel (refereegranskat)abstract
- The importance for governments of establishing ethical principles and criteria for priority setting in line with social values, has been emphasised. The risk of such criteria not being operationalised and instead replaced by de-contextualised priority-setting tools, has been noted. The aim of this article was to compare whether citizenś views are in line with how a criterion derived from parliamentary-decided ethical principles have been interpreted into a framework for evaluating severity levels, in resource allocation situations in Sweden. Interviews were conducted with 15 citizens and analysed by directed content analysis. The results showed that the multi-factorial aspects that participants considered as relevant for evaluating severity, were similar to those used by professionals in the Severity Framework, but added some refinements on what to consider when taking these aspects into account. Findings of similarities, such as in our study, could have the potential to strengthen the internal legitimacy among professionals, to use such a priority-setting tool, and enable politicians to communicate the justifiability of how severity is decided. The study also disclosed new aspects regarding severity, of which some are ethically disputed, implying that our results also reveal the need for ongoing ethical discussions in publicly-funded healthcare systems.
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| 23. |
- Bäck, Maria, et al.
(författare)
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Important aspects in relation to patients attendance at exercise-based cardiac rehabilitation - facilitators, barriers and physiotherapists role: a qualitative study
- 2017
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Ingår i: BMC Cardiovascular Disorders. - : BIOMED CENTRAL LTD. - 1471-2261 .- 1471-2261. ; 17
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Tidskriftsartikel (refereegranskat)abstract
- Background: In order to improve attendance at exercise-based cardiac rehabilitation (CR), a greater insight into patients perspectives is necessary. The aim of the study was to explore aspects that influence patients attendance at exercise-based CR after acute coronary artery disease (CAD) and the role of the physiotherapist in patients attendance at exercise-based CR. Methods: A total of 16 informants, (5 women; median age 64.5, range 47-79 years), diagnosed with CAD, were included in the study at the Cardiology Department, Linkping University Hospital, Sweden. Qualitative interviews were conducted and analysed according to inductive content analysis. Results: Four main categories were identified: (i) previous experience of exercise, (ii) needs in the acute phase, (iii) important prerequisites for attending exercise-based CR and (iv) future ambitions. The categories demonstrate that there are connections between the past, the present and the future, in terms of attitudes to facilitators, barriers and the use of strategies for managing exercise. An overall theme, defined as existential thoughts, had a major impact on the patients attitudes to attending exercise-based CR. The interaction and meetings with the physiotherapists in the acute phase were described as important factors for attending exercise-based CR. Moreover, informants could feel that the physiotherapists supported them in learning the right level of effort during exercise and reducing the fear of exercise. Conclusions: This study adds to previous knowledge of barriers and facilitators for exercise-based CR that patients with CAD get existential thoughts both related to exercise during the rehabilitation process and for future attitudes to exercise. This knowledge might necessitate greater attention to the physiotherapist-patient interaction. To be able to tailor exercise-based CR for patients, physiotherapists need to be aware of patients past experiences of exercise and previous phases of the rehabilitation process as these are important for how patients perceive their need and ability of exercise.
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| 24. |
- Bäckman, Karin, 1967-, et al.
(författare)
-
Prioriteringar över kommunala förvaltningsområden : ett utvecklingsarbete i Motala kommun
- 2017
-
Rapport (övrigt vetenskapligt/konstnärligt)abstract
- Motala kommun är den första kommunen som på ett systematiskt sätt tagit sig an prioritering och resursfördelning inom alla sina förvaltningsområden med utgångspunkt i de etiska principer och riktlinjer för prioriteringar som gäller för hälso- och sjukvård. Arbetet omfattar utveckling av ett verktyg för prioritering, anpassat till ett kommunalt sammanhang och att använda det i ett systematiskt prioriteringsarbete kombinerat med politiska mål och visioner. Avsikten är att prioriteringsarbetet ska utvecklas till en hållbar rutin, integrerad i befintlig budgetprocess.Syftet med denna rapport är att beskriva det första skedet i utvecklingsarbetet, med tillhörande arbetsprocesser samt att analysera det utifrån ett förbättringsoch implementeringsperspektiv. Rapporten omfattar åren 2013-2015.Prioriteringscentrums engagemang i Motala kommun har inneburit att vi genom s k aktionsforskning har studerat utvecklingen av prioriteringsarbetet samtidigt som vi gett stöd till kommunen och deltagit i utvecklingsarbetet av verktyg och processer. Datainsamling har skett genom observationer, dokument, enkäter och olika typer av kontakter.I Motala kommun har prioriteringsprocessen och dess verktyg utvecklats i nära samarbete med involverade aktörer, de som skulle bli användarna. Prioriteringsarbetet har integrerats i kommunens befintliga ledningssystem och rutiner. Utvecklingen har skett stegvis i små förbättringscykler. På detta sätt har kunskap och lärande byggts upp inom organisationen och arbetet har präglats av långsiktighet.Motala kommuns utveckling av verktyg och processer för prioritering visar att det är möjligt att vägledas av nationella etiska principer för prioritering inom hälso- och sjukvård och att det går att kombinera dessa med politiska mål och visioner. Det har också varit möjligt att inkludera kommunens alla förvaltningar i prioriteringsarbetet i en öppen, systematisk process som kopplats till ordinarie budgetarbete.
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| 25. |
- Carlsson, Staffan, et al.
(författare)
-
Vägledning för prioriteringar i en behovsstyrd hälso- och sjukvård för god och jämlik hälsa i hela befolkningen.
- 2022
-
Rapport (övrigt vetenskapligt/konstnärligt)abstract
- Sammanfattande synpunkter från deltagande regionerI projektet beskrev deltagarna hur prioritering och resursfördelning går till i respektive region idag och hur de skulle vilja utveckla arbetet framöver.Deltagarna beskrev ett antal viktiga förutsättningar för att på ett systematiskt sätt, med utgångspunkt från befolkningens hälsa och behov av hälso- och sjukvård, kunna prioritera och fördela resurser till de med störst behov.Ett tydligt uppdrag från politiken att leverera strukturerade underlag som underlättar diskussion och beslut om prioriteringar.En tydlig mottagare av underlag och analyser med uppdrag att agera vidare utifrån dessa.Ett strukturerat arbetssätt och tydliga roller för både förtroendevalda och tjänstepersoner.Skapa förutsättningar i organisationen för att genomföra hela processen.En god dialog mellan förtroendevalda, tjänstepersoner och vårdprofession.En gemensam förståelse för vad som ska uppnås med prioriteringarna.Behovsanalyser både avseende bredd (stora grupper) och djup (specifika tillstånd).Beskrivning av utfallet av hälso- och sjukvårdens åtgärder i form av hälsovinster i befolkningen samt kostnaderna för att åstadkomma dessa hälsovinster.Beslut om prioriteringar som grundas på fakta och framtagna underlag.Uppföljning av beslutade prioriteringar genom dialog på flera nivåer (politik, tjänsteperson, vårdprofession, patient och befolkning).För att få genomslag för politiska prioriteringar i en hel region har förtroendevalda i fullmäktige, styrelser och nämnder ett särskilt ansvar.Regiondirektör, hälso- och sjukvårdsdirektör, ekonomidirektör och budgetchef behöver vara engagerade och tjänstepersoner med kompetens från hälso- och sjukvård, regional utveckling, ekonomi och analys behöver bilda ett tvärprofessionellt team.Det är nödvändigt att säkra en gemensam förståelse för behovet av politiska prioriteringar i verksamheterna och hos befolkningen.
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| 26. |
- Davidson, Thomas, et al.
(författare)
-
Cost-effectiveness of caries preventive interventions : a systematic review
- 2021
-
Ingår i: Acta Odontologica Scandinavica. - : Taylor & Francis. - 0001-6357 .- 1502-3850. ; 79:4, s. 309-320
-
Forskningsöversikt (refereegranskat)abstract
- OBJECTIVE: The primary purpose of this study was to assess the cost-effectiveness of caries preventive interventions.MATERIAL AND METHODS: A systematic review was conducted, following the PRISMA Statement. Four electronic databases were searched (final search 16 March 2020). Studies fulfilling the inclusion criteria were independently critically appraised, by two reviewers in parallel. Data from each included study were extracted and tabulated: the analysis used a narrative approach to present the results of the estimated cost-effectiveness.RESULTS AND CONCLUSIONS: Twenty-six publications fulfilled the inclusion criteria and were of low or moderate risk of bias. Ten publications were economic evaluations, directly based on empirical studies, and the other 16 were modelling studies. Most of the studies concerned interventions for children and the most common were analyses of fluoride varnish and risk-based programs. Some of the studies showed both reduced cost and improved outcomes, but most studies reported that the improved outcome came with an additional cost. The results disclosed several cost-effectiveness evaluations of caries preventive interventions in the literature, but these target primarily children at high risk. There is a scarcity of studies specifically targeting adults and especially the elderly.
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| 27. |
- Davidson, Thomas, 1977-
(författare)
-
How to include relatives and productivity loss in a cost‐effectiveness analysis
- 2009
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Health economic evaluations are today commonly used in the decision‐making process in health care. Within the field of cost‐effectiveness analysis (CEA), there are several methodological and empirical issues that cause debate about what is included in the analysis. This thesis covers two such issues; costs and effects for relatives, and the valuation of individuals’ productivity loss due to morbidity. The objective of the thesis is to provide further knowledge about what should be included in CEAs which take a societal approach. The papers that the thesis is based on, four in total, examine the theoretical aspects of the studied issues and test these aspects empirically. Three different data materials were used. The CEA and the estimation of costs and effects are central in all the papers. The outcome measure used is quality‐adjusted life years (QALYs).The relatives of an individual with a disease or disability often provide informal care, and there may also be concomitant effect on their own well‐being. Nevertheless, the costs and effects for the relatives are generally excluded from CEAs, and there are few guidelines for how to include relatives’ effects. This thesis suggests the use of a new measure, R‐QALYs, which can be used both to visualise relatives’ effects and to include them in the analysis. We found that while the EQ‐5D instrument can be used to capture some of the relatives’ effects, it most likely misses a number of important attributes, for example altruistic preferences. Methods of eliciting R‐QALY weights include direct valuation methods and indirect methods, using existing relativerelated instruments. However, none of these methods are without difficulties, and there is a need for more studies on estimating valid relatives’ effects. Another possible approach with high potential is to use monetary measurements for both the costs and effects relevant to relatives.The results also show that income affects the QALY weights if the individuals include the utility generated by consumption within their QALY weights. The empirical tests showed that a majority of individuals do not consider their own income when they value health states. An explicit instruction to take income into account seemed to affect the valuation of those health states that were assumed to have consequences on the ability to perform daily activities. These findings give support for including the productivity costs caused by morbidity in the analysis; as these costs are not, or are only to a minor extent, implicitly incorporated in individuals’ QALY weights. The loss of leisure time, however, is captured in the QALY weight, and care must be taken to avoid double counting this loss in the analysis.The results of CEAs will only be partial if relatives’ costs and effects and the costs of individuals’ productivity loss are excluded for health interventions where they are assumed to be of significant importance.
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| 28. |
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| 29. |
- Davidson, Thomas, et al.
(författare)
-
In pursuit of QALY weights for relatives : Empirical estimates in relatives caring for older people
- 2008
-
Ingår i: European Journal of Health Economics. - : SpringerLink. - 1618-7598 .- 1618-7601. ; 9:3, s. 285-292
-
Tidskriftsartikel (refereegranskat)abstract
- This study estimates quality-adjusted life-year (QALY) weights for relatives caring for an older person. The data used are from the Swedish part of the EUROFAMCARE study. A new measure is introduced called the R-QALY weight, defined as the effect on a relative’s QALY weight due to being a relative of a disabled or sick individual. R-QALY weights were created by comparing relatives’ QALY weights with population-based QALY weights. They were also created by comparing with QALY weights reassessed for a hypothetical situation in which the older person needed no care. The results indicate that R-QALY weights are small when compared with population-based weights, but large when compared with QALY weights reassessed for the hypothetical situation. Moreover, R-QALY weights were affected by relatives’ age, sex, and subjective perception of positive and negative aspects of the caregiving situation. These aspects should therefore be taken into account in health economics evaluations using a societal approach.
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| 30. |
- Drees, Catharina, et al.
(författare)
-
Clinical Priority Setting and Decision-Making in Sweden : A Cross-sectional Survey Among Physicians
- 2022
-
Ingår i: International Journal of Health Policy and Management. - : Kerman University of Medical Sciences. - 2322-5939. ; 11:7, s. 1148-1157
-
Tidskriftsartikel (refereegranskat)abstract
- Background: Priority setting in healthcare that aims to achieve a fair and efficient allocation of limited resources is a worldwide challenge. Sweden has developed a sophisticated approach. Still, there is a need for a more detailed insight on how measures permeate clinical life. This study aimed to assess physicians views regarding (1) impact of scarce resources on patient care, (2) clinical decision-making, and (3) the ethical platform and national guidelines for healthcare by the National Board of Health and Welfare (NBHW). Methods: An online cross-sectional questionnaire was sent to two groups in Sweden, 2016 and 2017. Group 1 represented 331 physicians from different departments at one University hospital and group 2 consisted of 923 members of the Society of Cardiology. Results: Overall, a 26% (328/1254) response rate was achieved, 49% in group 1 (162/331), 18% in group 2 (166/923). Scarcity of resources was perceived by 59% more often than at least once per month, whilst 60% felt less than well-prepared to address this issue. Guidelines in general had a lot of influence and 19% perceived them as limiting decision-making. 86% professed to be mostly independent in decision-making. 36% knew the ethical platform well and very well and 64% NBHWs national guidelines. 57% expressed a wish for further knowledge and training regarding the ethical platform and 51% for support in applying NBHWs national guidelines. Conclusion: There was a need for more support to deal with scarcity of resources and for increased knowledge about the ethical platform and NBHWs national guidelines. Independence in clinical decision-making was perceived as high and guidelines in general as important. Priority setting as one potential pathway to fair and transparent decision-making should be highlighted more in Swedish clinical settings, with special emphasis on the ethical platform.
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| 31. |
- Eckerblad, Jeanette, et al.
(författare)
-
Symptom burden in community-dwelling older people with multimorbidity : a cross-sectional study
- 2015
-
Ingår i: BMC Geriatrics. - : BMJ Publishing Group Ltd. - 1471-2318. ; 15
-
Tidskriftsartikel (refereegranskat)abstract
- Background: Globally, the population is ageing and lives with several chronic diseases for decades. A high symptom burden is associated with a high use of healthcare, admissions to nursing homes, and reduced quality of life. The aims of this study were to describe the multidimensional symptom profile and symptom burden in community-dwelling older people with multimorbidity, and to describe factors related to symptom burden. Methods: A cross-sectional study including 378 community-dwelling people >= 75 years, who had been hospitalized >= 3 times during the previous year, had >= 3 diagnoses in their medical records. The Memorial Symptom Assessment Scale was used to assess the prevalence, frequency, severity, distress and symptom burden of 31 symptoms. A multiple linear regression was performed to identify factors related to total symptom burden. Results: The mean number of symptoms per participant was 8.5 (4.6), and the mean total symptom burden score was 0.62 (0.41). Pain was the symptom with the highest prevalence, frequency, severity and distress. Half of the study group reported the prevalence of lack of energy and a dry mouth. Poor vision, likelihood of depression, and diagnoses of the digestive system were independently related to the total symptom burden score. Conclusion: The older community-dwelling people with multimorbidity in this study suffered from a high symptom burden with a high prevalence of pain. Persons with poor vision, likelihood of depression, and diseases of the digestive system are at risk of a higher total symptom burden and might need age-specific standardized guidelines for appropriate management.
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| 32. |
- Ekdahl, Anne W, et al.
(författare)
-
Costs and Effects of an Ambulatory Geriatric Unit (the AGe-FIT Study) : A Randomized Controlled Trial
- 2015
-
Ingår i: Journal of the American Medical Directors Association. - : Elsevier. - 1538-9375 .- 1525-8610. ; 16:6, s. 497-503
-
Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES: To examine costs and effects of care based on comprehensive geriatric assessment (CGA) provided by an ambulatory geriatric care unit (AGU) in addition to usual care.DESIGN: Assessor-blinded, single-center randomized controlled trial.SETTING: AGU in an acute hospital in southeastern Sweden.PARTICIPANTS: Community-dwelling individuals aged 75 years or older who had received inpatient hospital care 3 or more times in the past 12 months and had 3 or more concomitant medical diagnoses were eligible for study inclusion and randomized to the intervention group (IG; n = 208) or control group (CG; n = 174). Mean age (SD) was 82.5 (4.9) years.INTERVENTION: Participants in the IG received CGA-based care at the AGU in addition to usual care.OUTCOME MEASURES: The primary outcome was number of hospitalizations. Secondary outcomes were days in hospital and nursing home, mortality, cost of public health and social care, participant' sense of security in care, and health-related quality of life (HRQoL).RESULTS: Baseline characteristics did not differ between groups. The number of hospitalizations did not differ between the IG (2.1) and CG (2.4), but the number of inpatient days was lower in the IG (11.1 vs 15.2; P = .035). The IG showed trends of reduced mortality (hazard ratio 1.51; 95% confidence interval [CI] 0.988-2.310; P = .057) and an increased sense of security in care interaction. No difference in HRQoL was observed. Costs for the IG and CG were 33,371£ (39,947£) and 30,490£ (31,568£; P = .432).CONCLUSIONS AND RELEVANCE: This study of CGA-based care was performed in an ambulatory care setting, in contrast to the greater part of studies of the effects of CGA, which have been conducted in hospital settings. This study confirms the superiority of this type of care to elderly people in terms of days in hospital and sense of security in care interaction and that a shift to more accessible care for older people with multimorbidity is possible without increasing costs. This study can aid the planning of future interventions for older people.TRIAL REGISTRATION: clinicaltrials.gov identifier: NCT01446757.
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| 33. |
- Ekdahl, Anne W., et al.
(författare)
-
Long-Term Evaluation of the Ambulatory Geriatric Assessment: A Frailty Intervention Trial (AGe-FIT): Clinical Outcomes and Total Costs After 36 Months
- 2016
-
Ingår i: Journal of the American Medical Directors Association. - : ELSEVIER SCIENCE INC. - 1525-8610 .- 1538-9375. ; 17:3, s. 263-268
-
Tidskriftsartikel (refereegranskat)abstract
- Objective: To compare the effects of care based on comprehensive geriatric assessment (CGA) as a complement to usual care in an outpatient setting with those of usual care alone. The assessment was performed 36 months after study inclusion. Design: Randomized, controlled, assessor-blinded, single-center trial. Setting: A geriatric ambulatory unit in a municipality in the southeast of Sweden. Participants: Community-dwelling individuals aged >= 75 years who had received inpatient hospital care 3 or more times in the past 12 months and had 3 or more concomitant medical diagnoses were eligible for study inclusion. Participants were randomized to the intervention group (IG) or control group (CG). Intervention: Participants in the IG received CGA-based care for 24 to 31 months at the geriatric ambulatory unit in addition to usual care. Outcome measures: Mortality, transfer to nursing home, days in hospital, and total costs of health and social care after 36 months. Results: Mean age (SD) of participants was 82.5 (4.9) years. Participants in the IG (n = 208) lived 69 days longer than did those in the CG (n = 174); 27.9% (n = 58) of participants in the IG and 38.5% (n = 67) in the CG died (hazard ratio 1.49, 95% confidence interval 1.05-2.12, P =.026). The mean number of inpatient days was lower in the IG (15.1 [SD 18.4]) than in the CG (21.0 [SD 25.0], P =.01). Mean overall costs during the 36-month period did not differ between the IG and CG (USD 71,905 [SD 85,560] and USD 65,626 [SD 66,338], P =.43). Conclusions: CGA-based care resulted in longer survival and fewer days in hospital, without significantly higher cost, at 3 years after baseline. These findings add to the evidence of CGAs superiority over usual care in outpatient settings. As CGA-based care leads to important positive outcomes, this method should be used more extensively in the treatment of older people to meet their needs. (c) 2016 AMDA - The Society for Post-Acute and Long-Term Care Medicine.
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| 34. |
- Elf, Mikael, 1959, et al.
(författare)
-
An investigation of intended and real use of a research web health portal and its implementation
- 2014
-
Ingår i: Electronic Journal of Health Informatics. - Melbourne, Victoria : Health Informatics Society of Australia (H I S A) Ltd.. - 1446-4381. ; 8:1
-
Tidskriftsartikel (refereegranskat)abstract
- Participatory design (PD) projects involve prospective users as co-designers in a process where the design object emerges through several iterations. However, the result of such a process can only partly anticipate how the future real users will use the designed object. For this reason, its actual use needs to be investigated. The present study investigated the relationship between intended use and real use in two web-based health support systems in order to explore the conditions for redesign. The dependency between intended use and real use was found to be weak. Rather, the real use was dependent on 1) the context of use and 2) the needs or interest of the users. We conclude that redesign should be based on continuous use of web metrics collected in natural settings and by involving users on a recurring basis. While a web health portal must have an agenda it is important to adapt thing design to use design, why redesign in essence will become an adaptation to user needs.©Copyright of articles originally published in www.eJHI.net under the Creative Commons Attribution 3.0 License is retained by the authors.
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| 35. |
- Elf, Mikael, 1959, et al.
(författare)
-
Design of Web-based Support Systems in Less Structured Contexts - the Case of Young Carers.
- 2011
-
Ingår i: Medicine 2.0 Congress, Sept 17-18 2011, Stanford University, US..
-
Konferensbidrag (refereegranskat)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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| 36. |
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| 37. |
- Elf, Mikael, 1959, et al.
(författare)
-
The web is not enough, its a base - an explorative study of what needs a web-based support system for young carers must meet
- 2011
-
Ingår i: Informatics for Health and Social Care. - London : Informa Healthcare. - 1753-8157 .- 1753-8165. ; 36:4, s. 206-219
-
Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to gain knowledge about the specific needs that a web-based support system for young carers (YCs) must meet. Twelve young people with experience of caring for and supporting a close friend, partner or relative with mental illness (MI) were interviewed about their life situation, support needs and opinions about a hypothetical web-based support system. The transcribed interviews were analysed using content analysis. The analysed data were organised into three themes relating to support needs, each including a number of sub-themes: knowledge - understanding MI, managing the mentally ill person and self-care; communication - shared experiences, advice and feedback, and befriending; and outside involvement - acute relief, structured help and health care commitments. Web-based support for YCs may be a suitable way to meet the need for knowledge and to meet some of the needs for communication. We have outlined a concept of a geographically anchored web support to meet the need for befriending, facilitate connections to health and social care, and increase understanding and interaction between the parties involved. Further research is needed to corroborate the results.
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| 38. |
- Elf, Mikael, 1959, et al.
(författare)
-
Young carers as co-designers of a web-based support system - the views of two publics.
- 2011
-
Ingår i: Advances in Health Care Sciences Conference, Oct 18-19 2011, Karolinska Institutet, Stockholm.
-
Konferensbidrag (refereegranskat)abstract
- Aims: The aims of the study was to reveal young carers views of design of a web-base support system directed to them and to reveal differences between their views and the views of project representatives, in a participatory design process. Methods: Eight young people, 17-24, close to and supporting someone with mental illness were involved in either a work or a test group. The work group participated in video recorded design meetings with representatives of the project. Content analysis and Dewey's concept of public were applied on the data. The test group worked from their homes and data were collected via test forms. Data from the test group coherent to the content of the design meetings were added as supplement. Results: Four resulting themes were revealed, constituting key-parts in the design of the WBSS: Communicating the message, ideational working principles, considerations on user interaction, and user interface. Furthermore decisive differences between the views of participants and project representatives were found. Participants view of the user was a person that had a usefulness perspective and the object for support was primarily the person with mental illness. The project representatives' view of the user was a person that had a short- and long-term self-care perspective and the object of support was primarily him-/herself. Conclusion: The design of a WBSS for young carers should consider four key-parts, but early user involvement and critical reflection in the PD process itself may be crucial to discern differences between designers and user, not the least when their different publics overlap.
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| 39. |
- Elf, Mikael, 1959, et al.
(författare)
-
Young carers as co-designers of a web-based support system - the views of two publics
- 2012
-
Ingår i: Informatics for Health and Social Care. - : Informa UK Limited. - 1753-8157 .- 1753-8165. ; 37:4, s. 203-216
-
Tidskriftsartikel (refereegranskat)abstract
- Aim: The aim of the study was to reveal young carers’ views of design of a web-based support system (WBSS) directed to them and the differences between their views and the views of project representatives (PRs), in a participatory design process. Methods: Eight young people, 17–24 years, were involved in either a work or a test group. The work group participated in video-recorded design meetings with representatives of the project. Content analysis and Dewey’s concept of public were applied on the data. The test group worked from their homes and data were collected via test forms and used as supplemental data. Results: Four themes were revealed, constituting key parts in the design of the WBSS: Communicating the message, Ideational working principles, User interaction and User interface. Furthermore, decisive differences between the views of participants and PRs were found. Conclusion: The four key parts should be considered in a WBSS directed to young carers. The study also suggests that early user involvement and critical reflection in the design process itself may be crucial to discern differences in perspective between designers and users.
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| 40. |
- Engstrand, Christina, et al.
(författare)
-
Factors affecting functional recovery after surgery and hand therapy in patients with Dupuytren's disease
- 2015
-
Ingår i: Journal of Hand Therapy. - : Elsevier. - 0894-1130 .- 1545-004X. ; 28:3, s. 255-260
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Tidskriftsartikel (refereegranskat)abstract
- Study design: Prospective cohort study. Introduction: The evidence of the relationship between functional recovery and impairment after surgery and hand therapy are inconsistent. Purpose of the study: To explore factors that were most related to functional recovery as measured by DASH in patients with Dupuytrens disease. Methods: Eighty-one patients undergoing surgery and hand therapy were consecutively recruited. Functional recovery was measured by the Disability of the Arm, Shoulder and Hand (DASH) questionnaire. Explanatory variables: range of motion of the finger joints, five questions regarding safety and social issues of hand function, and health-related quality of life (Euroqol). Results: The three variables "need to take special precautions", "avoid using the hand in social context", and health-related quality of life (EQ-5D index) explained 62.1% of the variance in DASH, where the first variable had the greatest relative effect. Discussion: Safety and social issues of hand function and quality of life had an evident association with functional recovery. Level of evidence: IV.
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| 41. |
- Engstrand, Christina, et al.
(författare)
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Hand function and quality of life before and after fasciectomy for Dupuytren contracture
- 2014
-
Ingår i: Journal of Hand Surgery-American Volume. - : Elsevier. - 0363-5023 .- 1531-6564. ; 39:7, s. 1333-1343
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE:To describe changes in joint motion, sensibility, and scar pliability and to investigate the patients' expectations, self-reported recovery, and satisfaction with hand function, disability, and quality of life after surgery and hand therapy for Dupuytren disease.METHODS:This prospective cohort study collected measurements before surgery and 3, 6, and 12 months after surgery and hand therapy. Ninety patients with total active extension deficits of 60° or more from Dupuytren contracture were included. Outcomes measures were range of motion; sensibility; scar pliability; self-reported outcomes on expectations, recovery, and satisfaction with hand function; Disabilities of the Arm, Shoulder, and Hand scores; safety and social issues of hand function; physical activity habits; and quality of life with the Euroqol.RESULTS:The extension deficit decreased, and there was a transient decrease in active finger flexion during the first year after surgery. Sensibility remained unaffected. Generally, patients with surgery on multiple fingers had worse scar pliability. The majority of the patients had their expectations met, and at 6 months, 32% considered hand function as fully recovered, and 73% were satisfied with their hand function. Fear of hurting the hand and worry about not trusting the hand function were of greatest concern among safety and social issues. The Disability of the Arm, Shoulder, and Hand score and the Euroqol improved over time.CONCLUSIONS:After surgery and hand therapy, disability decreased independent of single or multiple operated fingers. The total active finger extension improved enough for the patients to reach a functional range of motion despite an impairment of active finger flexion still present 12 months after treatment.
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| 42. |
- Engstrand, Christina
(författare)
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Hand function in patients with Dupuytren’s disease : Assessment, results & patients’ perspectives
- 2016
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Dupuytren’s Disease (DD) is a soft tissue disorder that leads to finger joint contractures affecting hand function. DD can be treated with surgery or injection and hand therapy to improve finger joint extension and thereby improve hand function. However, this does not cure the disease and recurrence is common. Previous research on DD has shown improvement in finger joint extension and in self-reported disability of the upper extremity after surgery and hand therapy for DD. However, this provides only a limited perspective on hand function, and multiple dimensions of changes in hand function (i.e. physical, psychosocial aspects and including the patients’ views of results) have not been reported as a whole.Aim: The overall aim of the thesis was to explore hand function before and after surgery and hand therapy in patients with DD, including assessment, results and patients’ perspectives.Methods: The thesis comprises three studies: Study A was a methodological study of interrater reliability in goniometry of the finger joints. Study B was a prospective cohort study with a repeated measures design. Study C was a qualitative interview study, using the model of Patient Evaluation Process and content analysis.Results: Interrater reliability was high or very high for goniometer measurement of finger joint range of motion (ROM) in patients with DD when experienced raters follow our standardized guidelines developed for the study. Changes in hand function consisted of improvement of finger joint extension while active finger flexion was significantly impaired during the first year after surgery and hand therapy. No patient reached a normal ROM, but the majority reached a functional ROM. Sensibility remained unaffected. Patients with surgery on multiple fingers had worse scar pliability than patients with surgery on a single finger. Most patients had their expectations met and were pleased or delighted with their hand function at 12 months after surgery and hand therapy. Safety issues of hand function were of greater concern than social issues. Patients reported less disability and improved health-related quality of life after surgery and hand therapy. The three variables “need to take special precautions”, “avoid using the hand in social context”, and health-related quality of life had significant importance for patients’ rating of functional recovery. Together, these variables explained 62% of the variance in functional recovery. Patients’ perspectives of undergoing a surgical intervention process were described through five categories. Previous experiences of care influenced participants’ expectations of results and the care they were about to receive. Previous experiences and expectations were used as references for appraisal of results, which concerned perceived changes in hand function, the care process, competency, and organization. Appraisal of results could also vary in relation to patient character. Appraisal of results of the intervention process influenced participants’ expectations of future hand function, health and care.Conclusions: Surgery and hand therapy for DD improve hand function and patients regain a functional ROM needed for performance of common daily activities. Despite the negative effect on finger flexion present during the first year after surgery, patients’ regards their hand function as recovered six to eight months after surgery and hand therapy. Measuring digital ROM in the finger joints with a goniometer is a reliable assessment method. However, from the patient’s perspective, it is not enough to evaluate results only in terms of digital extension or ROM. From their view, results of treatment concern consequences on daily use of the hand, what happens during the care process in terms of interaction between patient and health care provider, as well as their view of the competence and logistics of the organization providing the care.
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| 43. |
- Engstrand, Christina, et al.
(författare)
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Interrater Reliability in Finger Joint Goniometer Measurement in Dupuytrens Disease
- 2012
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Ingår i: American Journal of Occupational Therapy. - : American Occupational Therapy Association. - 0272-9490 .- 1943-7676. ; 66:1, s. 98-103
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Tidskriftsartikel (refereegranskat)abstract
- We investigated interrater reliability of range of motion (ROM) measurement in the finger joints of people with Dupuytrens disease. Eight raters measured flexion and extension of the three finger joints in one affected finger of each of 13 people with different levels of severity of Dupuytrens disease, giving 104 measures of joints and motions. Reliability measures, represented by intraclass correlation coefficient (ICC), standard error of the mean (SEM), and differences between raters with the highest and lowest mean scores, were calculated. ICCs ranged from .832 to .973 depending on joint and motion. The SEM was andlt;= 3 degrees for all joints and motions. Differences in mean between highest and lowest raters were larger for flexion than for extension; the largest difference was in the distal interphalangeal joint. The results indicate that following these standardized guidelines, the interrater reliability of goniometer measurements is high for digital ROM in people with Dupuytrens disease.
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| 44. |
- Engstrand, Christina, et al.
(författare)
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Patients'€™ perspective on surgical intervention for Dupuytren'€™s disease€ : experiences, expectations and appraisal of results
- 2016
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Ingår i: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 38:24-26, s. 2538-2549
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Tidskriftsartikel (refereegranskat)abstract
- Purpose To explore patients’ perspectives on surgical intervention for Dupuytren’s disease (DD), focusing on patients’ appraisal of results, involving previous experiences, expectations and patient characters.Method The participants were 21 men, mean age 66 years, scheduled for DD surgery. Qualitative interviews were conducted 2–4 weeks before surgery and 6–8 months after surgery. The model of the Patient Evaluation Process was used as theoretical framework. Data were analyzed using problem-driven content analysis.Results Five categories are described: previous experiences, expectations before surgery, appraisal of results, expectations of the future and patient character. Previous experiences influenced participants’ expectations, and these were used along with other aspects as references for appraisal of results. Participants’ appraisal of results concerned perceived changes in hand function, care process, competency and organization, and could vary in relation to patient character. The appraisal of results influenced participants’ expectations of future hand function, health and care.Conclusions Patients’ appraisal of results involved multidimensional reasoning reflecting on hand function, interaction with staff and organizational matters. Thus, it is not enough to evaluate results after DD surgery only by health outcomes as this provides only a limited perspective. Rather, evaluation of results should also cover process and structure aspects of care.Implications for RehabilitationTo improve health care services, it is important to be aware of the role played by patient’s previous experiences, expectations as well as staff and organizational aspects of care.Knowledge about patients’ experience and view of the results from surgery and rehabilitation should be established by assessment of care effects on health as well as structure and process aspects of care.Evaluation of structure and process aspects of care can be done by using questions about if the patient felt listened to, received clear information and explanations, was included in decision-making, and their view of waiting time or continuity of care.Improving health care services means not only providing the best treatment method available but also developing individualized care by ensuring good interaction with the patient, providing accurate information, and working to improve the structure of the care process.Before treatment, health care providers should have a dialogue with the patient and consider previous experiences and expectations in order to ensure the patient has balanced expectations of the outcome.
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| 45. |
- Holmér, Suzana, et al.
(författare)
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How health care professionals handle limited resources in primary care - an interview study
- 2023
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Ingår i: BMC Health Services Research. - : BMC. - 1472-6963. ; 23:1
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Health care systems around the world are struggling with limited resources, in relation to the prevailing health care need. An accessible primary care is an important part of the solution for how to provide affordable care for the population and reduce pressure on the overall health care system such as unnecessary hospital stays and associated costs. As primary care constitutes an important first line of healthcare, the task of prioritising and deciding what to do and for whom lies in practice, primarily with the primary care professionals. Thus, the decisions and behaviour of primary care professionals have a central role in achieving good and equal health in the population. The aim of this study is to explore how primary health care professionals handle situations with limited resources and enhance our knowledge of priorities in practice. Methods: Semi-structured interviews with 14 health care professionals (7 nurses, 7 physicians) working in Swedish primary care were interviewed. Data were analysed inductively with content analysis. Findings: Three main categories were found: Influx of patients; Structural conditions; and Actions. Each category illustrates an important aspect for what primary care professionals do to achieve good and equal care. The influx of patients concerned what the professionals handled in terms of patients healthcare needs and patient behaviour. Structural conditions consisted of policies and goals set for primary care, competence availability, technical systems, and organisational culture. To handle situations due to limited resources, professionals performed different actions: matching health care needs with professionals competency, defining care needs to suit booking systems appointments, giving care at the inappropriate health care level, rearranging workhours, and passing on the decision making. Conclusion: Priorities in primary care are not, "one fits all " solution. Our study shows that priorities in primary care comprise of ongoing daily processes that are adapted to the situation, context of patient influx, and structural conditions. Healthcare professionals actions for how influx of patients is handled in relation to limited resources, are created, and shaped within this context which also sets the boundaries for their actions.
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| 46. |
- Klompstra, Leonie, et al.
(författare)
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Factors related to health-related quality of life in older people with multimorbidity and high health care consumption over a two-year period
- 2019
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Ingår i: BMC Geriatrics. - : BMC. - 1471-2318. ; 19
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundThe prevalence of multimorbidity is increasing worldwide, and older people with multimorbidity are frequent users of health care services. Since multimorbidity has a significant negative impact on Health-related Quality of Life (HrQoL) and is more common in older age it would be expected that factors related to HrQoL in this group might have been thoroughly researched, but this is not the case. Furthermore, it is important to look at old people living at home, considering the shift from residential to home-based care. Therefore, we aim to investigate factors that are related to HrQoL in older people with multimorbidity and high health care consumption, living at home.MethodsThis is a secondary analysis of a RCT study conducted in a municipality in south-eastern Sweden. The study had a longitudinal design with a two-year follow-up period assessing HrQoL, symptom burden, activities of daily living, physical activity and depression.ResultsIn total, 238 older people with multimorbidity and high health care consumption, living at home were included (mean age 82, 52% female). A multiple linear regression model including symptom burden, activities of daily living and depression as independent variables explained 64% of the HrQoL. Higher symptom burden, lower ability in activities of daily living and a higher degree of depression were negatively related to HrQoL. Depression at baseline and a change in symptom burden over a two-year period explained 28% of the change in HrQoL over a two-year period variability. A higher degree of depression at baseline and negative change in higher symptom burden were related to a decrease in HrQoL over a two-year period.ConclusionIn order to facilitate better delivery of appropriate health care to older people with high health care consumption living at home it is important to assess HrQoL, and HrQoL over time. Symptom burden, activities of daily living, depression and change in symptom burden over time are important indicators for HrQoL.Trial registrationClinicaltrials.gov identifier: NCT01446757, the trial was registered prospectively with the date of trial registration October 5(th), 2011.
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| 47. |
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| 48. |
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| 49. |
- Krevers, Barbro, et al.
(författare)
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Development of the 'Patient perspective On Care and Rehabilitation process' instrument (POCR)
- 2002
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Ingår i: Aging Clinical and Experimental Research. - 1594-0667 .- 1720-8319. ; 14:5, s. 402-411
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Tidskriftsartikel (refereegranskat)abstract
- Background and aims: There is a lack of instruments for assessing patient-perceived quality of care developed from a process perspective and also from theoretical concepts based on a patient perspective. The objective was to develop an instrument for following-up the care and rehabilitation process of the elderly from the patients' perspective. Methods: The present instrument, the "Patient perspective On Care and Rehabilitation process" (POCR), is based on a theoretical framework for the patients' evaluation of the care process, i.e., an instrument-construction reflecting that the patients' needs differed during the care process. The POCR contains two scales, one measures the fulfilment of needs and the other the importance of the fulfilment of needs. Data collection took place via telephone interviews. Results: A factor analysis based on 306 cases resulted in seven factors reflecting the different phases in the care process and with an explained variance of 60.8. Assessed by Cronbach's alpha coefficient, the internal consistency was 0.83 for the total importance scale and between 0.55-0.71 for each factor. Conclusions: The POCR is a valid, reliable and useful multidimensional instrument for measuring patient-perceived outcome of the care and rehabilitation process in the elderly. (C) 2002, Editrice Kurtis.
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