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- 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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| 2. |
- 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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| 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
- 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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| 4. |
- 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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| 5. |
- Elf, Mikael, 1959, et al.
(författare)
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Design of Web-based Support Systems in Less Structured Contexts - the Case of Young Carers.
- 2011
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Ingår i: Medicine 2.0 Congress, Sept 17-18 2011, Stanford University, US..
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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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| 6. |
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| 7. |
- Skärsäter, Ingela, 1952-, et al.
(författare)
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Health and lifestyle among young informal carers who support family members or close friends with mental illness
- 2013
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Ingår i: Horatio, European Psychiatric Nursing Congress 2013. ; , s. 135-135
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Konferensbidrag (refereegranskat)abstract
- In the last decades it has been stated that the mental health of young people has deteriorated. Young persons’ report depressive feelings, anxiety and sleep-disturbance. The tendency is most pronounced for young women in the ages 16-24 years. Nowadays, the main parts of the psychiatric care are out-patient care. Family, relatives and close friends get involved and need to take great responsibility for their relative or friend with mental illness, which has consequences for their own health. This study will explore health situation among young persons’, age 16-25 years, who are identifying themselves as supporting a family member or a friend with mental illness. The collected data in this study is based on baseline data from the research project “Ps Young Support”. That research project aimed to develop and evaluate web-based health efforts for young persons’ who were close to people who suffered from mental illness. Data was collected by means of questionnaires in June 2010, which the informants (N=241, 170 females and 71 males) responded. Sociodemographic and lifestyle characteristics were obtained and self-rated health questions were asked about their general health, well-being, physical and mental illnesses. The results revealed high levels of stress, as well as different psychosomatic symptoms, such as sleeping problems, and head- or stomach ache. Over half of the young persons stated that they used some kind of non-prescriptive pharmacological treatments against pain. This is alarming and preventive health care resources should be offered to these young informal carers.
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