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Santini, S., Socci, M., Boccaletti, L., D’Amen, B., Becker, S., Lewis, F., . . . Hanson, E. (2019). Adolescent young caregivers of older, sick or disabled family members: evidence from the ‘ME-WE’ European project online survey in Italy. In: Presented at the International Association of Gerontology and Geriatrics European Region Congress 2019, Gothenburg, Sweden, May 23-25, 2019: . Paper presented at International Association of Gerontology and Geriatrics European Region Congress 2019, Gothenburg, Sweden, May 23-25, 2019.
Open this publication in new window or tab >>Adolescent young caregivers of older, sick or disabled family members: evidence from the ‘ME-WE’ European project online survey in Italy
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2019 (English)In: Presented at the International Association of Gerontology and Geriatrics European Region Congress 2019, Gothenburg, Sweden, May 23-25, 2019, 2019Conference paper, Oral presentation with published abstract (Refereed)
Abstract [en]

Aims: Several studies at national level show that the phenomenon of Adolescent Young Caregivers (AYCs) of older, sick or disabled family members is increasing, despite the fact that European data are missing. Having family care responsibilities can compromise AYC’s mental well-being, school performance, training, work opportunities and social inclusion. The Horizon 2020 “ME-WE” project, aims at systematizing the knowledge about AYCs at European level and strengthening their resilience.

Methods: About 3,000 adolescents (aged 15-17) were surveyed in 2018 in six European countries (Italy, Slovenia, Sweden, Switzerland, The Netherlands, UK) through an on-line questionnaire including demographic questions, the Multidimensional Assessment of Caring Activities Checklist, the Positive and Negative Outcomes of Caring Questionnaire and Kidscreen Questionnaire. The survey had the goal of examining the prevalence of AYCs in the six partner countries and outlining profiles, needs and preferences of European AYCs. Data were analysed through descriptive and inferential statistics.

Results: In Italy, 243 (i.e. 27% out of 886 surveyed adolescents) were identified as AYCs, mainly females (62.1%). 60.5% of AYCs provided care for their grandparents (80 for grandfathers, 67 for grandmothers). Due to care responsibilities, 3.3% of Italian AYCs found it difficult to attend school and study with proficiency; 3,7% were bullied; 5.8% reported mental health problems (e.g. depression or anxiety). Only 7.8% received support connected with their caring role.  

Conclusion: “ME-WE” represents the first systematic study on AYCs in Europe. Italian findings highlighted a notable proportion of AYCs of older people and that just a few of them received support, with negative effects on their mental well-being, school performance and social inclusion. In light of the above, tailored policies and interventions for enhancing Italian AYC’s resilience are needed as well as training for boosting educational and health practitioners’ capability of identifying and appropriately sup

National Category
Nursing
Research subject
Health and Caring Sciences, Caring Science
Identifiers
urn:nbn:se:lnu:diva-84703 (URN)
Conference
International Association of Gerontology and Geriatrics European Region Congress 2019, Gothenburg, Sweden, May 23-25, 2019
Available from: 2019-06-07 Created: 2019-06-07 Last updated: 2019-11-20Bibliographically approved
Hanson, E., Sennemark, E. & Magnusson, L. (2019). Anhörigas delaktighet och behov (1 uppl.ed.). In: Mirjam Ekstedt & Maria Flink (Ed.), Hemsjukvård: olika perspektiv på trygg och säker vård (pp. 209-226). Stockholm: Liber
Open this publication in new window or tab >>Anhörigas delaktighet och behov
2019 (Swedish)In: Hemsjukvård: olika perspektiv på trygg och säker vård / [ed] Mirjam Ekstedt & Maria Flink, Stockholm: Liber, 2019, 1 uppl., p. 209-226Chapter in book (Other academic)
Place, publisher, year, edition, pages
Stockholm: Liber, 2019 Edition: 1 uppl.
National Category
Nursing
Research subject
Health and Caring Sciences
Identifiers
urn:nbn:se:lnu:diva-75898 (URN)9789147112777 (ISBN)
Available from: 2018-06-14 Created: 2018-06-14 Last updated: 2019-05-20Bibliographically approved
Berghamre Heinz, A., Magnusson, L., Hanson, E. & Furenbäck, I. (2019). Barn som anhöriga: Alla barn ska få möjlighet till hälsa och personlig utveckling. Kalmar: Nationellt kompetenscentrum för anhöriga
Open this publication in new window or tab >>Barn som anhöriga: Alla barn ska få möjlighet till hälsa och personlig utveckling
2019 (Swedish)Report (Other academic)
Abstract [sv]

Alla barn och unga har rätt att växa upp under trygga och goda förhållanden och få det skydd och stöd som kan behövas för en gynnsam fysisk och social utveckling. Vad gäller barn som anhöriga utsätts de för mångfaldigt större risker att drabbas av såväl sjukdom som sociala problem jämfört med andra barn. Samhället kan gemensamt verka förebyggande genom att minska risk- och stärka skyddsfaktorer för barnen och deras familjer och utveckla och systematiskt följa upp riktade stödinsatser för barnen. Genom utveckling av organisatoriska strukturer och rutiner, enskilda initiativ och engagemang kan bättre förutsättningar för alla barn stärkas. Nka arbetar för att bidra till sådant stöd att närståendes svårigheter inte inkräktar på barnets hälsa, utveckling och skolgång. I denna folder finner Ni flera intressanta exempel på rutiner och insatser till barn som anhöriga. Låt er inspireras och vara delaktiga i detta viktiga uppdrag, att alla barn ska få möjlighet till hälsa, personlig utveckling, utbildning och social delaktighet.

Place, publisher, year, edition, pages
Kalmar: Nationellt kompetenscentrum för anhöriga, 2019. p. 24
National Category
Health Sciences
Research subject
Health and Caring Sciences, Nursing
Identifiers
urn:nbn:se:lnu:diva-73115 (URN)978-91-87731-59-4 (ISBN)
Available from: 2018-04-20 Created: 2018-04-20 Last updated: 2019-05-28Bibliographically approved
Malm, C., Hanson, E. & Andersson, S. (2019). Carers' views and experiences of the co-creation of a national carer strategy. In: Presented at the International Association of Gerontology and Geriatrics European Region Congress 2019, Gothenburg, Sweden, May 23-25, 2019, 2019: . Paper presented at International Association of Gerontology and Geriatrics European Region Congress 2019, Gothenburg, Sweden, May 23-25, 2019.
Open this publication in new window or tab >>Carers' views and experiences of the co-creation of a national carer strategy
2019 (English)In: Presented at the International Association of Gerontology and Geriatrics European Region Congress 2019, Gothenburg, Sweden, May 23-25, 2019, 2019, 2019Conference paper, Oral presentation with published abstract (Refereed)
Abstract [en]

In Sweden, increasingly the care of older people is carried out by informal/family carers. That is, family members- adult children and spouses, but also relatives and friends. In the move towards people-centred, integrated care systems, there is a growing argument for carers to be seen as partners in care alongside the person they are caring for and health and care staff. Whilst there is an increasing awareness of carers’ role within service systems and their own needs for support, their involvement in research has not been systematically explored.   One of the university nodes within the UserAge research programme, focuses on this theme.

 This presentation will examine recent research to create a national carer strategy in Sweden. In particular, to examine carers’ involvement during the research and development (R&D) process. An overview of the initial stages of the design process will be given drawing on the theoretical foundations for the work with reference to the temporal model of family caring and the carer as expert model.  The presentation will focus on findings from a  qualitative study (n=12) that explored how carers perceived R&D work and their own experiences of being involved in the development of a national carer strategy. Interview participants were purposively selected from those carers that participated in focus group interviews conducted in the earlier design phase. Main findings include the challenges and benefits of carer involvement in research and their aspirations and concerns regarding their involvement in research generally, and with regards to the national carer strategy.

 The discussion will examine the level of carers’ involvement and the significance of their involvement in the co-creation process of the national carer strategy. Concluding comments will highlight that genuine carer involvement in research also demands a high level of engagement from involved researchers and policymakers during the entire process.

National Category
Nursing
Research subject
Health and Caring Sciences, Caring Science
Identifiers
urn:nbn:se:lnu:diva-90189 (URN)
Conference
International Association of Gerontology and Geriatrics European Region Congress 2019, Gothenburg, Sweden, May 23-25, 2019
Note

Symposium presentation

Available from: 2019-11-20 Created: 2019-11-20 Last updated: 2019-11-20Bibliographically approved
Andréasson, F., Aidemark, J., Magnusson, L., Strömberg, A. & Hanson, E. (2019). Lifeworld in co-designing with informal carers. Journal of Enabling Technologies, 13(1), 29-39
Open this publication in new window or tab >>Lifeworld in co-designing with informal carers
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2019 (English)In: Journal of Enabling Technologies, ISSN 2398-6263, Vol. 13, no 1, p. 29-39Article in journal (Refereed) Published
Abstract [en]

Purpose – The purpose of this paper is to reflect on carers’ experiences of being involved in the development of a web-based support programme for carers of people with heart failure (CPwHF), and discuss the challenges related to their involvement in the development process. The focus was on the different phases in the project as well as the methodological challenges and opportunities that occurred in the user group sessions conducted.

Design/methodology/approach – This research adopt an explorative design studying a co-design process to develop an information and communication technology based support programme for and with CPwHF. Habermas’ concepts of lifeworld and system are used as a theoretical framework to analyse the co-design process employed in the study.

Findings – Reflecting on the co-design approach adopted, the findings highlight the methodological challenges that arise with carer involvement and the possible tensions that occur between researchers’ ambitions to include users in the design process, and the goal of developing a product or service, in the different phases of the design process.

Originality/value – Findings highlight that there is a tension between the system and lifeworld in the co-design process which are not totally compatible. The paper highlights that there is a need to develop flexible and reflexive human-centred design methodologies, able to meet carers’ needs and ideas, and at the same time balance this with proposed research outcomes.

Place, publisher, year, edition, pages
Emerald Group Publishing Limited, 2019
National Category
Other Health Sciences Information Systems, Social aspects
Research subject
Health and Caring Sciences, Health Informatics
Identifiers
urn:nbn:se:lnu:diva-88908 (URN)10.1108/JET-05-2018-0023 (DOI)000484263700003 ()
Projects
ICT4SelfCare
Available from: 2019-09-02 Created: 2019-09-02 Last updated: 2019-09-25Bibliographically approved
Malm, C., Andersson, S., Joenson, H., Magnusson, L. & Hanson, E. (2019). Moving beyond the first response phenomenon Exploring carers' views and experiences of being involved in research and development work. International journal of sociology and social policy, 39(7-8), 627-643
Open this publication in new window or tab >>Moving beyond the first response phenomenon Exploring carers' views and experiences of being involved in research and development work
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2019 (English)In: International journal of sociology and social policy, ISSN 0144-333X, E-ISSN 1758-6720, Vol. 39, no 7-8, p. 627-643Article in journal (Refereed) Published
Abstract [en]

Purpose In Sweden, the care of older people and people with disabilities is increasingly carried out by informal carers, often family members, who are unpaid and outside a professional or formal framework. While there is an increasing awareness of the role of carers within service systems and their own needs for support, their involvement in research is underexplored. The purpose of this paper is to explore carers' views and experiences of involvement in research and development (R&D) work. Design/methodology/approach A qualitative study was conducted, consisting of 12 individual interviews with carers from different local Swedish carer organizations. Findings Core findings included carers' discussions of the perceived challenges and benefits of their involvement in research, both generally and more specifically, in the context of their involvement in the development of a national carer strategy. Research limitations/implications - Limitations included the relative lack of male carer participants and the convenience sample. Practical implications - Authentic carer involvement in research demands a high level of engagement from researchers during the entire research process. The provided CRAC framework, with reference to the themes community, reciprocity, advocacy and circumstantiality, may help researchers to understand and interpret carer involvement in research and provide the prerequisites for their involvement. Originality/value There is a dearth of studies that systematically examine carer involvement in research. This paper attempts to redress this gap by providing a nuanced analysis of carer involvement in R&D work from the perspective of carers themselves.

Place, publisher, year, edition, pages
Emerald Group Publishing Limited, 2019
Keywords
Identity, Heterogeneity, Research and development, Social policy, Carer involvement, Carer strategy
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Research subject
Health and Caring Sciences
Identifiers
urn:nbn:se:lnu:diva-89259 (URN)10.1108/IJSSP-05-2019-0091 (DOI)000482906500008 ()
Available from: 2019-09-24 Created: 2019-09-24 Last updated: 2019-09-24Bibliographically approved
Johansson, M., Wåhlin, I., Magnusson, L. & Hanson, E. (2019). Nursing staff's experiences of intensive care unit diaries: a qualitative study. Nursing in Critical Care, 24(6), 407-413
Open this publication in new window or tab >>Nursing staff's experiences of intensive care unit diaries: a qualitative study
2019 (English)In: Nursing in Critical Care, ISSN 1362-1017, E-ISSN 1478-5153, Vol. 24, no 6, p. 407-413Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Diaries as an intervention to aid psychological recovery among intensive care patients have been used for about 20 years, and findings tend to be positive. The provision of a diary directed at the patient may clarify the story of the intensive care unit (ICU) even for the family members and the family members of non-survivors. Members of nursing staff are the primary authors, but how they themselves experience the use of ICU diaries has been minimally explored.

AIMS AND OBJECTIVES: This study aimed to explore how nursing staff experienced the use of ICU patient diaries.

DESIGN: Qualitative design using focus group interviews.

METHODS: A qualitative methodology was used. Six focus group interviews were conducted with 27 nursing staff recruited from one university and two county hospitals. The data were analysed via thematic content analysis.

FINDINGS: One overarching theme, 'An effort to do good in words and actions', and four interconnected themes were derived from the analysis. By creating the diary, nursing staff had to deal with a variety of ethical and practical dilemmas, but feedback from patients, family members and ICU follow-up services reinforced the feeling of doing good. This overarching feeling of beneficence encouraged diary authoring and increased motivation and commitment to strive towards excellent patient care. To sustain the use of ICU diaries, collegiate and organizational support was deemed essential.

CONCLUSIONS: Nursing staff strived to do good in words and actions for patients and their families when writing the diaries. Positive feedback from patients, family members and ICU follow-up services reinforced feelings of doing good, which served to enhance work satisfaction and a commitment to good-quality nursing care. Experiential-based education was recommended to help sustain ICU diary writing.

RELEVANCE TO CLINICAL PRACTICE: Nursing staff requested mentoring and group discussions concerning the format, content and communication channels of the diary.

Place, publisher, year, edition, pages
John Wiley & Sons, 2019
Keywords
Diaries, Experiences, ICU, Nursing staff, Qualitative, Thematic content analysis
National Category
Nursing
Research subject
Health and Caring Sciences, Caring Science
Identifiers
urn:nbn:se:lnu:diva-84583 (URN)10.1111/nicc.12416 (DOI)30680873 (PubMedID)
Available from: 2019-06-04 Created: 2019-06-04 Last updated: 2019-11-26Bibliographically approved
Hanson, E. & Magnusson, L. (2019). Quality of long term care from a carer perspective: a commissioned study to inform the national quality plan for care of older people in Sweden. In: Presented at the International Association of Gerontology and Geriatrics European Region Congress 2019, Gothenburg, Sweden, May 23-25, 2019, 2019: . Paper presented at International Association of Gerontology and Geriatrics European Region Congress 2019, Gothenburg, Sweden, May 23-25, 2019.
Open this publication in new window or tab >>Quality of long term care from a carer perspective: a commissioned study to inform the national quality plan for care of older people in Sweden
2019 (English)In: Presented at the International Association of Gerontology and Geriatrics European Region Congress 2019, Gothenburg, Sweden, May 23-25, 2019, 2019, 2019Conference paper, Oral presentation with published abstract (Refereed)
Abstract [en]

The presentation will highlight findings from a report commissioned by the independent investigator for the National Quality Plan for Care of Older People. In Sweden, a traditional welfare model of care for older people has come under increasing threat in recent years leading to a pattern of de-universalisation of care, an increase in for-profit provision of publicly funded care for older people and an increase in informal/family care.   This contextual backdrop provides the rationale for the commissioned study that focused on the role of informal/ family carers of older people within long term care.

The overall aim was to explore what makes for a good quality of care for older people from a carer perspective? The specific aims were:

  1. To map carers’ experiences and preferences regarding quality of long term care for an older relative
  2. To identify potential differences in experiences in relation to gender, class and cultural background
  3. Suggest priority areas for policy, practice and research

The study was underpinned by the ‘carers as experts’ model in which carers and practitioners are viewed as co-experts, each with differing yet complementary forms of knowledge. The study comprised a systematic literature review and findings  were validated  via three focus group interviews and individual  interviews with representatives from pensionist, disability and carer organisations and decision makers from the municipality and health care region (n= 21).

The main findings focused on the theme of a sense of security together with five interrelated themes. Despite a policy rhetoric of equal care, older people and carers tend to be treated differently depending on their education, work/social position, gender, ethnic origin, religious beliefs, disability, sexual preferences and age.

To conclude, current quality indicators need to include a carer perspective and gaps in the research include studies focusing on service provision in older people’s own homes.

National Category
Nursing
Research subject
Health and Caring Sciences, Caring Science
Identifiers
urn:nbn:se:lnu:diva-84702 (URN)
Conference
International Association of Gerontology and Geriatrics European Region Congress 2019, Gothenburg, Sweden, May 23-25, 2019
Note

Symposium: Towards carer-friendly systems in the European Union: the EU pillar of social rights as a framework for evidence-based policymaking- findings from the Eurocarers Research Working Group

Symposium Chair: Elisabeth Hanson

Available from: 2019-06-07 Created: 2019-06-07 Last updated: 2019-11-20Bibliographically approved
Ewertzon, M. & Hanson, E. (2019). Support interventions for family members of adults with mental illness: a narrative literature review. Issues in Mental Health Nursing, 40(9), 768-780
Open this publication in new window or tab >>Support interventions for family members of adults with mental illness: a narrative literature review
2019 (English)In: Issues in Mental Health Nursing, ISSN 0161-2840, E-ISSN 1096-4673, Vol. 40, no 9, p. 768-780Article, review/survey (Refereed) Published
Abstract [en]

The aim of this review was to describe research related to support interventions for adult family members of people with mental illness and the significance that support may have. The results indicate the importance of flexible and individualized forms of support from both professionals and people with personal experience as a family member of someone with mental illness. In many cases, the intervention studies revealed that family members' burden decreased, their knowledge of the disease and treatment increased, and their ability to cope with the situation was improved. The results highlight the importance of support both from professionals and peers.

Place, publisher, year, edition, pages
Taylor & Francis, 2019
National Category
Nursing
Research subject
Health and Caring Sciences, Nursing
Identifiers
urn:nbn:se:lnu:diva-84580 (URN)10.1080/01612840.2019.1591547 (DOI)000482131200006 ()31145025 (PubMedID)
Available from: 2019-06-04 Created: 2019-06-04 Last updated: 2019-09-24Bibliographically approved
Hanson, E., Hellström, A., Sandvide, Å., Jackson, G. A., MacRae, R., Waugh, A., . . . Tolson, D. (2019). The extended palliative phase of dementia: an integrative literature review. Dementia, 18(1), 108-134
Open this publication in new window or tab >>The extended palliative phase of dementia: an integrative literature review
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2019 (English)In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 18, no 1, p. 108-134Article, review/survey (Refereed) Published
Abstract [en]

This article presents an integrative literature review of the experience of dementia care associated with the extended palliative phase of dementia. The aim was to highlight how dementia is defined in the literature and describe what is known about the symptomatology and management of advanced dementia regarding the needs and preferences of the person with dementia and their family carer/s. There was no consistent definition of advanced dementia. The extended palliative phase was generally synonymous with end-of-life care. Advanced care planning is purported to enable professionals to work together with people with dementia and their families. A lack of understanding of palliative care among frontline practitioners was related to a dearth of educational opportunities in advanced dementia care. There are few robust concepts and theories that embrace living the best life possible during the later stages of dementia. These findings informed our subsequent work around the concept, ‘Dementia Palliare’.

Place, publisher, year, edition, pages
Sage Publications, 2019
Keywords
Advanced dementia, Integrative literature review, Palliare, Palliative care
National Category
Nursing
Research subject
Health and Caring Sciences, Caring Science
Identifiers
urn:nbn:se:lnu:diva-61510 (URN)10.1177/1471301216659797 (DOI)000456465500007 ()2-s2.0-85045150247 (Scopus ID)
Available from: 2017-03-21 Created: 2017-03-21 Last updated: 2019-08-29Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0001-7609-4822

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