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Hellström, Ingrid
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Odzakovic, E., Kullberg, A., Hellström, I., Andrew, C., Sarah, C., Kainde, M., . . . Richard, W. (2019). ‘It's our pleasure, we count cars here’: an exploration of the ‘neighbourhood-based connections’ for people living alone with dementia. Ageing & Society, 9, 1-26
Öppna denna publikation i ny flik eller fönster >>‘It's our pleasure, we count cars here’: an exploration of the ‘neighbourhood-based connections’ for people living alone with dementia
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2019 (Engelska)Ingår i: Ageing & Society, ISSN 0144-686X, E-ISSN 1469-1779, Vol. 9, s. 1-26Artikel i tidskrift (Refereegranskat) Epub ahead of print
Abstract [en]

The extent of social isolation experienced by people living with dementia who reside in the community has been well acknowledged, yet little is known about how people living alone with dementia maintain neighbourhood-based connections. The purpose of this study is to examine the experiences of people with dementia who live alone, focusing upon how they establish social networks and relationships in a neighbourhood context, and how they are supported to maintain this social context within everyday life. Multiple data collection methods were used including, semi-structured interviews, walking interviews, guided home tours and social network mapping, which were conducted with 14 community-dwelling people living alone with dementia (11 women and three men) situated across the three international study sites in England, Scotland and Sweden. Data were analysed using thematic analysis. The analysis revealed four main themes: (a) making the effort to stay connected; (b) befriending by organisations and facilitated friendships; (c) the quiet neighbourhood atmosphere; and (d) changing social connections. The analysis suggests that people with dementia who live alone were active agents who took control to find and maintain relationships and social networks in the neighbourhood. Our findings indicate the need to raise awareness about this specific group in both policy and practice, and to find creative ways to help people connect through everyday activities and by spontaneous encounters in the neighbourhood.

Ort, förlag, år, upplaga, sidor
Cambridge University Press, 2019
Nyckelord
Dementia, living alone, neighbourhood, community, qualitative research, social networks, relationships, solitude
Nationell ämneskategori
Folkhälsovetenskap, global hälsa, socialmedicin och epidemiologi Omvårdnad Socialt arbete
Identifikatorer
urn:nbn:se:liu:diva-160696 (URN)10.1017/s0144686x19001259 (DOI)
Tillgänglig från: 2019-10-02 Skapad: 2019-10-02 Senast uppdaterad: 2019-10-09Bibliografiskt granskad
Lasrado, R., Bielsten, T., Hann, M., Davies, L., Schumm, J., Reilly, S., . . . Hellström, I. (2018). Designing and Implementing a Home-Based Couple Management Guide for Couples Where One Partner has Dementia (DemPower): Protocol for a Nonrandomized Feasibility Trial. JMIR Research Protocols, 7(8), Article ID e171.
Öppna denna publikation i ny flik eller fönster >>Designing and Implementing a Home-Based Couple Management Guide for Couples Where One Partner has Dementia (DemPower): Protocol for a Nonrandomized Feasibility Trial
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2018 (Engelska)Ingår i: JMIR Research Protocols, ISSN 1929-0748, E-ISSN 1929-0748, Vol. 7, nr 8, artikel-id e171Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

The increasing rate of dementia and high health and social care costs call for effective measures to improve public health and enhance the wellbeing of people living with dementia and their relational networks. Most postdiagnostic services focus on the condition and the person with dementia with limited attention to the caring spouse or partner. The key focus of the study is to develop a guide for couples where one partner has a diagnosis of dementia. This couple management guide is delivered in the form of an app, DemPower.

Ort, förlag, år, upplaga, sidor
JMIR Publications, 2018
Nyckelord
couple management guide; dementia; dementia intervention; dementia self-help
Nationell ämneskategori
Folkhälsovetenskap, global hälsa, socialmedicin och epidemiologi
Identifikatorer
urn:nbn:se:liu:diva-156007 (URN)10.2196/resprot.9087 (DOI)30097423 (PubMedID)
Tillgänglig från: 2019-04-01 Skapad: 2019-04-01 Senast uppdaterad: 2019-08-23
Harding, A. J. E., Morbey, H., Ahmed, F., Opdebeeck, C., Wang, Y.-Y., Williamson, P., . . . Reilly, S. (2018). Developing a core outcome set for people living with dementia at home in their neighbourhoods and communities: study protocol for use in the evaluation of non-pharmacological community-based health and social care interventions. Trials, 19, Article ID 247.
Öppna denna publikation i ny flik eller fönster >>Developing a core outcome set for people living with dementia at home in their neighbourhoods and communities: study protocol for use in the evaluation of non-pharmacological community-based health and social care interventions
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2018 (Engelska)Ingår i: Trials, ISSN 1745-6215, E-ISSN 1745-6215, Vol. 19, artikel-id 247Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

Background: The key aim of the study is to establish an agreed standardised core outcome set (COS) for use when evaluating non-pharmacological health and social care interventions for people living at home with dementia. Methods/design: Drawing on the guidance and approaches of the Core Outcome Measures in Effectiveness Trials (COMET), this study uses a four-phase mixed-methods design: 1 Focus groups and interviews with key stakeholder groups (people living with dementia, care partners, relevant health and social care professionals, researchers and policymakers) and a review of the literature will be undertaken to build a long list of outcomes. 2 Two rounds of Delphi surveys will be used with key stakeholder groups. Statements for the Delphi surveys and participation processes will be developed and informed through substantial member involvement with people living with dementia and care partners. A consensus meeting will be convened with key participant groups to discuss the key findings and finalise the COS. 3 A systematic literature review will be undertaken to assess the properties of tools and instruments to assess components of the COS. Measurement properties, validity and reliability will be assessed using the Consensus-based Standards for the Selection of Health Measurement (COSMIN) and COMET guidance. 4 A stated preference survey will elicit the preferences of key stakeholders for the outcomes identified as important to measure in the COS. Discussion: To the best of our knowledge, this study is the first to use a modified Delphi process to involve people living with dementia as a participant group. Though the study is confined to collecting data in the United Kingdom, use of the COS by researchers will enhance the comparability of studies evaluating non-pharmacological and community-based interventions.

Ort, förlag, år, upplaga, sidor
BIOMED CENTRAL LTD, 2018
Nyckelord
Core outcome set; Dementia; Non-pharmacological interventions; Community-based programmes; Neighbourhood; Delphi method; Public involvement
Nationell ämneskategori
Hälso- och sjukvårdsorganisation, hälsopolitik och hälsoekonomi
Identifikatorer
urn:nbn:se:liu:diva-147928 (URN)10.1186/s13063-018-2584-9 (DOI)000431359600001 ()29690920 (PubMedID)
Anmärkning

Funding Agencies|ESRC; NIHR

Tillgänglig från: 2018-05-23 Skapad: 2018-05-23 Senast uppdaterad: 2019-08-23
Odzakovic, E., Hellström, I., Ward, R. & Kullberg, A. (2018). 'Overjoyed that I can go outside': Using walking interviews to learn about the lived experience and meaning of neighbourhood for people living with dementia.. Dementia, Article ID 1471301218817453.
Öppna denna publikation i ny flik eller fönster >>'Overjoyed that I can go outside': Using walking interviews to learn about the lived experience and meaning of neighbourhood for people living with dementia.
2018 (Engelska)Ingår i: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, artikel-id 1471301218817453Artikel i tidskrift (Refereegranskat) Epub ahead of print
Abstract [en]

This study explores the relationships between people living with dementia and their neighbourhood as they venture out from home on a regular and often routine basis. Here, we report findings from the Swedish field site of an international 5-year project: Neighbourhoods: our people, our places. The aims of this study were to investigate the lived experience of the neighbourhood for people with dementia and through this to better understand the meaning that neighbourhood held for the participants. In this study, we focus on the walking interviews which were conducted with 14 community-dwelling people with dementia (11 men and 3 women) and were analysed using an interpretative phenomenological method. Four themes were revealed from these interviews: life narratives embedded within neighbourhood; the support of selfhood and wellbeing through movement; the neighbourhood as an immediate social context; and restorative connections to nature. These themes were distilled into the 'essence' of what neighbourhood meant for the people we interviewed: A walkable area of subjective significance and social opportunity in which to move freely and feel rejuvenated. We have found that the neighbourhood for community-dwelling people with dementia holds a sense of attachment and offers the potential for freedom of movement. Our research indicates that a dementia diagnosis doesn't necessarily reduce this freedom of movement. The implications for practice and policy are considered: future research should explore and pay closer attention to the diverse living conditions of people living with dementia, and not least the particular challenges faced by people living alone with dementia.

Nyckelord
community-dwelling, dementia, interpretative phenomenology, lived experiences, neighbourhood, walking interviews
Nationell ämneskategori
Geriatrik
Identifikatorer
urn:nbn:se:liu:diva-153897 (URN)10.1177/1471301218817453 (DOI)30541394 (PubMedID)
Tillgänglig från: 2019-01-18 Skapad: 2019-01-18 Senast uppdaterad: 2019-08-23
Hedman, R., Hellström, I., Ternestedt, B.-M., Hansebo, G. & Norberg, A. (2018). Sense of Self in Alzheimers Research Participants. Clinical Nursing Research, 27(2), 191-212
Öppna denna publikation i ny flik eller fönster >>Sense of Self in Alzheimers Research Participants
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2018 (Engelska)Ingår i: Clinical Nursing Research, ISSN 1054-7738, E-ISSN 1552-3799, Vol. 27, nr 2, s. 191-212Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

The sense of self is vulnerable in people with Alzheimers disease (AD), and might be positively and negatively influenced by research participation. The purpose of this study was to describe how people with AD express their experience of being a research participant with respect to their sense of self. Interviews and support group conversations involving 13 people with mild and moderate AD were analyzed using qualitative content analysis. Three themes were constructed: contributing to an important cause, gaining from participating, and experiencing risks and drawbacks. Participants described contributing to research as being in line with their lifelong values and lifestyles. They expressed contentment and pride about being research participants, emphasized their positive relationships with the researchers, and described participation as a meaningful activity. When research procedures threatened their sense of self, they were able to reason about risks and decline participation.

Ort, förlag, år, upplaga, sidor
SAGE PUBLICATIONS INC, 2018
Nyckelord
Alzheimers disease; research participation; self; support group
Nationell ämneskategori
Omvårdnad
Identifikatorer
urn:nbn:se:liu:diva-145122 (URN)10.1177/1054773816672671 (DOI)000423586200005 ()29374986 (PubMedID)
Anmärkning

Funding Agencies|Oscar and Maria Ekman Foundation; Ersta Diakoni; Dementia Association-The National Association for the Rights of the Demented; Swedish Order of St. John; Erling-Persson Family Foundation

Tillgänglig från: 2018-02-19 Skapad: 2018-02-19 Senast uppdaterad: 2019-08-23
Österlind, J., Ternestedt, B.-M., Hansebo, G. & Hellström, I. (2017). Feeling lonely in an unfamiliar place: older peoples experiences of life close to death in a nursing home. International Journal of Older People Nursing, 12(1), Article ID e12129.
Öppna denna publikation i ny flik eller fönster >>Feeling lonely in an unfamiliar place: older peoples experiences of life close to death in a nursing home
2017 (Engelska)Ingår i: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 12, nr 1, artikel-id e12129Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

The aim of the study was to deepen the understanding of how older persons living in a nursing home experience life close to death.

Ort, förlag, år, upplaga, sidor
John Wiley & Sons, 2017
Nyckelord
end-of-life care; nursing home care; older people; palliative care; transition
Nationell ämneskategori
Omvårdnad
Identifikatorer
urn:nbn:se:liu:diva-145579 (URN)10.1111/opn.12129 (DOI)000405747300008 ()27624362 (PubMedID)
Tillgänglig från: 2018-03-20 Skapad: 2018-03-20 Senast uppdaterad: 2018-03-20
Hellström, I. & Hydén, L.-C. (Eds.). (2016). Att leva med demens (1ed.). Malmö: Gleerups Utbildning AB
Öppna denna publikation i ny flik eller fönster >>Att leva med demens
2016 (Svenska)Samlingsverk (redaktörskap) (Övrigt vetenskapligt)
Abstract [sv]

För att personer med demenssjukdom ska kunna leva ett fullgott liv behövs mer kunskap. I grunden handlar det om att förändra föreställningar och attityder till personer som lever med en demenssjukdom så att personerna själva, deras anhöriga och personal inom hälso- och sjukvården och politiker, kan se nya möjligheter i stället för enbart förluster. I den här boken presenteras kunskap och forskning som sätter personer med demenssjukdom i centrum. Boken utgår alltså inte i första hand från vården eller anhöriga, utan från dem som lever med sjukdomen. På så sätt skapas en tankeram som ger stöd vid både utvecklingsarbete och reflektion bland människor som på olika sätt arbetar med och för personer med demenssjukdom.

Cirka 110 000 och 170 000 svenskar har i dag en demenssjukdom. Om ett tiotal år är det betydligt fler: ökad livslängd och en större medvetenhet om demenssjukdomar gör att allt fler personer får en diagnos tidigt i förloppet. Som en konsekvens av detta kommer alltfler personer att leva med en demenssjukdom under lång tid, och ofta i hemmet. Detta innebär inte bara en utmaning för vård, omsorg och socialpolitik, utan väcker också frågor som berör såväl personer med demens, som anhöriga och andra i det sociala nätverket: Hur kan personer med demens leva och fungera i sitt hem tillsammans med eventuella familjemedlemmar? Hur kan de fungera som medborgare och delta i samhällslivet, ha makt över sitt eget vardagsliv och fatta egna beslut om sitt eget liv?

I boken medverkar forskare från Centrum för demensforskning (CEDER) vid Linköpings universitet. Den innehåller många pedagogiska exempel och riktar sig till utbildningar inom vård, omvårdnad, socialt arbete och omsorg.

Ort, förlag, år, upplaga, sidor
Malmö: Gleerups Utbildning AB, 2016. s. 240 Upplaga: 1
Nyckelord
Dementia, Cognition disorders, Demenssjuka, Demens, Hjärnsjukdomar
Nationell ämneskategori
Tvärvetenskapliga studier inom samhällsvetenskap Gerontologi, medicinsk/hälsovetenskaplig inriktning
Identifikatorer
urn:nbn:se:liu:diva-123704 (URN)9789140691651 (ISBN)
Tillgänglig från: 2016-01-08 Skapad: 2016-01-08 Senast uppdaterad: 2018-01-10Bibliografiskt granskad
Nilsson, E. & Hellström, I. (2016). Demens och identitet i relationer (1ed.). In: Ingrid Hellström, Lars-Christer Hydén (Ed.), Att leva med demens: (pp. 71-77). Malmö: Gleerups Utbildning AB
Öppna denna publikation i ny flik eller fönster >>Demens och identitet i relationer
2016 (Svenska)Ingår i: Att leva med demens / [ed] Ingrid Hellström, Lars-Christer Hydén, Malmö: Gleerups Utbildning AB, 2016, 1, s. 71-77Kapitel i bok, del av antologi (Övrigt vetenskapligt)
Ort, förlag, år, upplaga, sidor
Malmö: Gleerups Utbildning AB, 2016 Upplaga: 1
Nyckelord
Demenssjuka, Demens
Nationell ämneskategori
Humaniora Sociologi (exklusive socialt arbete, socialpsykologi och socialantropologi)
Identifikatorer
urn:nbn:se:liu:diva-126087 (URN)978-91-4069-165-1 (ISBN)
Tillgänglig från: 2016-03-14 Skapad: 2016-03-14 Senast uppdaterad: 2016-04-04Bibliografiskt granskad
Bielsten, T. & Hellström, I. (2016). Den bortglömda kroppen (1ed.). In: Ingrid Hellström & Lars-Christer Hydén (Ed.), Att leva med demens: (pp. 97-103). Malmö: Gleerups Utbildning AB
Öppna denna publikation i ny flik eller fönster >>Den bortglömda kroppen
2016 (Svenska)Ingår i: Att leva med demens / [ed] Ingrid Hellström & Lars-Christer Hydén, Malmö: Gleerups Utbildning AB, 2016, 1, s. 97-103Kapitel i bok, del av antologi (Övrigt vetenskapligt)
Ort, förlag, år, upplaga, sidor
Malmö: Gleerups Utbildning AB, 2016 Upplaga: 1
Nyckelord
Demenssjuka, Demens
Nationell ämneskategori
Sociologi (exklusive socialt arbete, socialpsykologi och socialantropologi)
Identifikatorer
urn:nbn:se:liu:diva-126081 (URN)978-91-4069-165-1 (ISBN)
Tillgänglig från: 2016-03-14 Skapad: 2016-03-14 Senast uppdaterad: 2016-08-23
Hedman, R., Hansebo, G., Ternestedt, B.-M., Hellström, I. & Norberg, A. (2016). Expressed Sense of Self by People With Alzheimers Disease in a Support Group Interpreted in Terms of Agency and Communion. Journal of Applied Gerontology, 35(4), 421-443
Öppna denna publikation i ny flik eller fönster >>Expressed Sense of Self by People With Alzheimers Disease in a Support Group Interpreted in Terms of Agency and Communion
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2016 (Engelska)Ingår i: Journal of Applied Gerontology, ISSN 0733-4648, E-ISSN 1552-4523, Vol. 35, nr 4, s. 421-443Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

The self is constructed in cooperation with other people and social context influences how people perceive and express it. People with Alzheimers disease (AD) often receive insufficient support in constructing their preferred selves, but little is known about how they express themselves together with other people with AD. In accordance with Harres social constructionist theory of self, this study aimed to describe how five people with mild and moderate AD express their Self 2 (i.e., their personal attributes and life histories) in a support group with a facilitator experienced in communicating with people with AD. The participants expressions of their Self 2 were analyzed with qualitative abductive content analysis and interpreted in terms of agency and communion and a lack of agency and communion. The findings highlight the importance of supporting a sense of agency and communion when assisting people with AD in constructing their self.

Ort, förlag, år, upplaga, sidor
SAGE PUBLICATIONS INC, 2016
Nyckelord
self; Alzheimers disease; agency; communion; support group
Nationell ämneskategori
Sociologi
Identifikatorer
urn:nbn:se:liu:diva-126798 (URN)10.1177/0733464814530804 (DOI)000371695800004 ()24776791 (PubMedID)
Anmärkning

Funding Agencies|Oscar and Maria Ekman Foundation; Ersta Diakoni; Dementia Association-The National Association for the Rights of the Demented; Swedish Order of St. John; Erling-Persson Family Foundation

Tillgänglig från: 2016-04-07 Skapad: 2016-04-05 Senast uppdaterad: 2017-04-21
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