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  • 1.
    Bielsten, Therese
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Ersta Skondal Bracke Univ Coll, Sweden.
    A review of couple-centred interventions in dementia: Exploring the what and why - Part A2019In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 18, no 7-8, p. 2436-2449Article, review/survey (Refereed)
    Abstract [en]

    Introduction Symptoms of dementia bring about challenges to couples relationships. Relationship-focused support has been highlighted to be of significant importance for sustained relationship quality and to reduce the negative impact of dementia on the dyadic relationship. This review aimed to explore the what and why of interventions aimed at couples where one partner has a diagnosis of dementia and in which the couple jointly participate. Method Searches were performed in Academic Search Premier, CINAHL, PsycINFO, PubMed, Scopus and Web of Science from January 2000 to August 2017. Results Six studies were included. Objectives for the person with dementia was related to cognitive function and for the care partner the objectives were related to well-being. The majority of the outcomes were mirrored by the objectives and focused on cognitive function for people with dementia and depression and relationship quality for care partners. Our findings indicate that people with dementia should be included in the assessment of the relationship in order to gain an overall picture of relationship dynamics and to increase tailored support in couple-centred interventions. Conclusions The findings of this review indicate that joint interventions for people with dementia and care partners are lacking a genuine dyadic approach where both partners views of their relationship are valued. In order to identify targets for support and to use the appropriate outcome measures, the quality of the relationship should be recognised and taken into account. Moreover, there is a lack of a salutogenic approach in couple-centred interventions in which couples strengths and resources can be identified and supported.

  • 2.
    Bielsten, Therese
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Ersta Skondal Bracke Univ Coll, Sweden.
    An extended review of couple-centred interventions in dementia: Exploring the what and why - Part B2019In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 18, no 7-8, p. 2450-2473Article, review/survey (Refereed)
    Abstract [en]

    This scoping review is an extended version of a narrative review of couple-centred interventions in dementia shared in part A and the previous publication in this edition. The rationale for expanding study A emerged through the fact that most dyadic interventions have samples consisting of a majority of couples. The exclusion of interventions with samples of mixed relationships in part A therefore contributed to a narrow picture of joint dyadic interventions for couples in which one partner has a dementia. The aim of this second review is to explore the what (types of interventions) and the why (objectives and outcome measures) of dyadic interventions in which sample consists of a majority of couples/spouses and in which people with dementia and caregivers jointly participate. Method A five-step framework for scoping reviews guided the procedure. Searches were performed in Academic Search Premier, CINAHL, PsycINFO, PubMed, Scopus, and Web of Science. Results Twenty-one studies with various types of psychosocial interventions were included. The main outcome measure for people with dementia was related to cognitive function, respectively caregiver burden and depression for caregivers. Conclusions The findings of this extended review of joint dyadic interventions in dementia are in line with the findings of part A regarding the negative approach of outcomes, lack of a genuine dyadic approach, lack of tailored support, neglect of interpersonal issues and the overlook of the views of people with dementia. This review also recognises that measures of caregiver burden, as well as relationship quality should be considered in samples of mixed relationships due to the different significance of burden and relationship quality for a spouse as opposed to an adult child or friend.

  • 3.
    Bielsten, Therese
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Lasrado, Reena
    Univ Manchester, England.
    Keady, John
    Univ Manchester, England.
    Kullberg, Agneta
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Medicine and Health Sciences.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland.
    Living Life and Doing Things Together: Collaborative Research With Couples Where One Partner Has a Diagnosis of Dementia2018In: Qualitative Health Research, ISSN 1049-7323, E-ISSN 1552-7557, Vol. 28, no 11, p. 1719-1734Article in journal (Refereed)
    Abstract [en]

    The aim of this study is to identify relevant content for a self-management guide by using the outcomes of previous research in combination with knowledge and experiences from couples where one partner has a diagnosis of dementia. The study was carried out in three phases: (a) literature search of previous research related to well-being and couplehood in dementia; (b) interviews with couples with dementia based on the findings of the literature search; and (c) further authentication of the findings within expert groups of people with dementia and carers. For analysis of data, we used a hybrid approach of thematic analysis with combined deductive and inductive approaches. The findings of this study indicated that the four main themes Home and Neighborhood, Meaningful Activities and Relationships, Approach and Empowerment, and Couplehood with related subthemes could be appropriate targets for a self-management guide for couples where one partner has a diagnosis of dementia.

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  • 4.
    Bielsten, Therése
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences.
    Den bortglömda kroppen2016In: Att leva med demens / [ed] Ingrid Hellström & Lars-Christer Hydén, Malmö: Gleerups Utbildning AB, 2016, 1, p. 97-103Chapter in book (Other academic)
  • 5.
    Carlander, Ida
    et al.
    Ersta Skondal University College.
    Sahlberg-Blom, Eva
    Ersta Skondal University College.
    Hellström, Ingrid
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies, Health, Activity, Care.
    Ternestedt, Britt-Marie
    Ersta Skondal University College.
    The modified self: family caregivers experiences of caring for a dying family member at home2011In: JOURNAL OF CLINICAL NURSING, ISSN 0962-1067, Vol. 20, no 7-8, p. 1097-1105Article in journal (Refereed)
    Abstract [en]

    Aim. The aim of this study was to explore situations in daily life that challenge caregivers self-image when caring for a dying family member at home. Background. Caregiving affects the health and daily lives of family caregivers. Patterns of challenging situations may provide insight into the home caregiving experience, thus contributing to our understanding of the influence it has on the caregivers self-image. Design. Qualitative descriptive study. Methods. Ten family caregivers who cared for a dying family member at home with support from an advanced home care team were interviewed 6-12 months after the death of the family member. The interviews were analysed with interpretive description. Result. Three patterns characterised the experiences of caregivers daily lives in caring for a dying family member at home: challenged ideals, stretched limits and interdependency. These patterns formed the core theme, the modified self. Situations that challenged the caregivers self-image were connected to experiences such as forbidden thoughts, intimacy and decreasing personal space. Conclusions. The caregivers met challenging situations in their daily lives that created a modified image of self. It is important to recognise the impact of caring for a dying family member at home. Relevance to clinical practice. This study argues for supporting family caregivers to maximise their potential to handle the demanding everyday life with a dying family member at home. This study contributes to understanding situations in the home that may challenge caregivers self-image and points out the importance of talking about caregiving experiences. From a clinical perspective, this study emphasises the significance of creating a climate, which allows family caregivers to express thoughts and feelings. Sharing experiences such as forbidden thoughts can be one way of handling the profoundly changed every day life.

  • 6.
    Carlander, Ida
    et al.
    Karolinska Institute, Stockholm, Sweden.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Stockholm, Sweden.
    Sahlberg-Blom, Eva
    Örebro University, Örebro, Sweden.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Health Sciences.
    Sandberg, Jonas
    Ersta Sköndal University College, Stockholm, Sweden.
    Being Me and Being Us in a Family Living Close to Death at Home2011In: Qualitative Health Research, ISSN 1049-7323, E-ISSN 1552-7557, Vol. 21, no 5, p. 683-695Article in journal (Refereed)
    Abstract [en]

    We used interpretive description to describe how everyday life close to death was experienced and dealt with in families with one member who had a life-threatening illness. We performed 28 individual, couple, and group interviews with five families. We found two patterns, namely, “being me in a family living close to death” and “being us in a family living close to death.” “Being me” meant that every individual in the family had to deal with the impending death, regardless of whether or not he or she was the person with the life-threatening illness. This was linked to ways of promoting the individual’s self-image, or “me-ness.” This pattern was present at the same time as the pattern of “being us,” or in other words, being a family, and dealing with impending death and a new “we-ness” as a group. “Striving for the optimal way of living close to death” was the core theme.

  • 7.
    Carlander, Ida
    et al.
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm and Department of Palliative Care Research, Ersta Sköndal University College, Stockholm, Sweden.
    Ternestedt, Britt-Marie
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm and Department of Palliative Care Research, Ersta Sköndal University College, Stockholm, Sweden and Research and Development Unit, Stockholm Sjukhem Foundation, Stockholm, Sweden.
    Sahlberg-Blom, Eva
    School of Health and Medical Sciences, Örebro University, Örebro, Sweden.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Health Sciences.
    Sandberg, Jonas
    Department of Palliative Care Research, Ersta Sköndal University College, Stockholm, Sweden.
    Four aspects of self-image close to death at home2011In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 6, no 2Article in journal (Refereed)
    Abstract [en]

    Living close to death means an inevitable confrontation with one's own existential limitation. In this article, we argue that everyday life close to death embodies an identity work in progress. We used a narrative approach and a holistic-content reading to analyze 12 interviews conducted with three persons close to death. By illuminating the unique stories and identifying patterns among the participants’ narratives, we found four themes exemplifying important aspects of the identity work related to everyday life close to death. Two of the themes, named “Inside and outside of me” and “Searching for togetherness,” represented the core of the self-image and were framed by the other themes, “My place in space” and “My death and my time.” Our findings elucidate the way the individual stories moved between the past, the present, and the future. This study challenges the idea that everyday life close to impending death primarily means limitations. The findings show that the search for meaning, new knowledge, and community can form a part of a conscious and ongoing identity work close to death.

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  • 8.
    Carlander, Ida
    et al.
    Ersta Sköndal University College and Ersta Hospital, Stockholm, Sweden.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College and Ersta Hospital, Stockholm, Sweden.
    Sandberg, Jonas
    Ersta Sköndal University College and Ersta Hospital, Stockholm, Sweden.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Ersta Sköndal University College and Ersta Hospital, Stockholm, Sweden.
    Constructing family identity close to death2013In: Open Journal of Nursing, ISSN 2162-5336, E-ISSN 2162-5344, Vol. 3, no 5, p. 379-388Article in journal (Refereed)
    Abstract [en]

    Daily life close to death involves physical, psychological, and social strain, exposing patients and their family members to major transitions affecting relational patterns and identity. For the individual family member, this often means sharing life with a changing person in a changing relationship, disrupting both individual identity and family identity. Our aim was to deepen the understanding of individual experiences that are important in constructing family identity close to death at home. We performed a secondary analysis of qualitative data collected through 40 interviews with persons with life-threatening illness and the family members who shared everyday life with them. The analysis resulted in interpretive descriptions which provided three patterns important for creating family identity, which we here call “we-ness” close to death. The patterns were: being an existential person, being an extension of the other, and being together in existential loneliness. Together, these three patterns seemed to play a part in the construction of family identity; we-ness, close to death. One important finding was the tension between the search for togetherness in “we-ness” while dealing with an existential loneliness, which seemed to capture an essential aspect of being a family of which one member is dying.

  • 9.
    Eckerblad, Jeanette
    et al.
    Linköping University, Department of Social and Welfare Studies, Health, Activity, Care. Linköping University, Faculty of Health Sciences.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Health, Activity, Care. Linköping University, Faculty of Health Sciences.
    Jakobsson, Per
    Linköping University, Department of Medical and Health Sciences, Pulmonary Medicine. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Centre for Surgery, Orthopaedics and Cancer Treatment, Department of Respiratory Medicine UHL.
    Kentsson, Magnus
    Landstinget i Jönköpings län.
    Skargren, Elisabeth
    Linköping University, Department of Medical and Health Sciences, Physiotherapy. Linköping University, Faculty of Health Sciences.
    Tödt, Kristina
    Linköping University, Department of Social and Welfare Studies, Health, Activity, Care. Linköping University, Faculty of Health Sciences.
    Unosson, Mitra
    Linköping University, Department of Social and Welfare Studies, Health, Activity, Care. Linköping University, Faculty of Health Sciences.
    Theander, Kersti
    Karlstad Universitet.
    Symptom Prevalence And Symptom Distress In Patients With COPD2012Conference paper (Other academic)
  • 10.
    Eckerblad, Jeanette
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences.
    Theander, Kersti
    Faculty of Health, Science and Technology, Department of Health Sciences, Nursing, Karlstad University, Karlstad, Sweden.
    Ekdahl, Anne
    Region Östergötland, Local Health Care Services in Central Östergötland, Department of Geriatric Medicine in Linköping. Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences.
    Jaarsma, Tiny
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences.
    Hellström, Iingrid
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences. Ersta Sköndal University College, Stockholm, Sweden.
    To adjust and endure: a qualitative study of symptom burden in older people with multimorbidity2015In: Applied Nursing Research, ISSN 0897-1897, E-ISSN 1532-8201, Vol. 28, no 4, p. 322-327Article in journal (Refereed)
    Abstract [en]

    Context Older people with multimorbidity are vulnerable and often suffer from conditions that produce a multiplicity of symptoms and a reduced health-related quality of life. Objectives The aim of this study is to explore the experience of living with a high symptom burden from the perspective of older community-dwelling people with multi-morbidity.

    Method A qualitative descriptive design with semi-structured interviews, including 20 community-dwelling older people with multi-morbidity and a high symptom burden. The participants were 79-€“89 years old with a mean of 12 symptoms per person. Data were analyzed using content analyses.

    Results The experience of living with a high symptom burden revealed the overall theme, “To adjust and endure” and three sub-themes. The first sub-theme was "To feel inadequate and limited". Participants reported that they no longer had the capacity or the ability to manage, and they felt limited and isolated from friends or family. The second sub-theme was "To feel dependent". This was a new and inconvenient experience; the burden they put on others caused a feeling of guilt. The final sub-theme was "To feel dejected". The strength to manage and control their conditions was gone; the only thing left to do was to sit or lie down and wait for it all to pass.

    Conclusion This study highlights the importance of a holistic approach when taking care of older people with multi-morbidity. This approach should employ a broad symptom assessment to reveal diseases and conditions that are possible to treat or improve.

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  • 11.
    Ekdahl, A. W.
    et al.
    Karolinska Institute, Sweden.
    Odzakovic, Elzana
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    LIVING UNNOTICED: COGNITIVE IMPAIRMENT IN OLDER PEOPLE WITH MULTIMORBIDITY2016In: The Journal of Nutrition, Health & Aging, ISSN 1279-7707, E-ISSN 1760-4788, Vol. 20, no 3, p. 275-279Article in journal (Refereed)
    Abstract [en]

    Objectives: To investigate the correlation between MMSE <= 23 and the presence of a diagnosis of dementia in the medical record in a population with multimorbidity. Design, setting, and participants: This cross-sectional study was part of the Ambulatory Geriatric Assessment - a Frailty Intervention Trial (AGe-FIT; N = 382). Participants were community dwelling, aged >= 75 years, had received inpatient hospital care at least three times during the past 12 months, and had three or more concomitant diagnoses according to the International Classification of Diseases, 10th revision. Measurements: The Mini Mental State Examination (MMSE) was administered at baseline. Medical records of participants with MMSE scores < 24 were examined for the presence of dementia diagnoses and two years ahead. Results: Fifty-three (16%) of 337 participants with a measure of MMSE had a MMSE scores < 24. Six of these 53 (11%) participants had diagnoses of dementia (vascular dementia, n = 4; unspecified dementia, n = 1; Alzheimers disease, n = 1) according to medical records; 89% did not. Conclusions: A MMSE-score < 24 is not well correlated to a diagnosis of dementia in the medical record in a population of elderly with multimorbidity. This could imply that cognitive decline and the diagnosis of dementia remain undetected in older people with multimorbidity. Proactive care of older people with multimorbidity should focus on cognitive decline to detect cognitive impairment and to provide necessary help and support to this very vulnerable group.

  • 12.
    Ericsson, Iréne
    et al.
    Jönköping University, Sweden.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Kjellström, Sofia
    Jönköping University, Sweden.
    Sliding interactions: An ethnography about how person with dementia interacts in special housing for elderly2011In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 10, no 4, p. 523-538Article in journal (Refereed)
    Abstract [en]

    This ethnography describes how persons with dementia interact with cognitively intact persons in housing with care for the elderly. The results, drawing upon 31 observation sessions and nine interviews, are described under the following themes, which were interpreted from the standpoint of social interaction theory: interaction with expression of satisfaction, disorientation, and dissociation. Interaction provided satisfaction, but did not always reflect a positive experience. Awareness in persons with dementia seemed to be greater than others perceived and, as a result, interaction was adversely affected by frequent well-intentioned corrections and comments. Participation in interaction can be encouraged and feelings of indignation avoided  by assuming that persons with dementia are aware of their situation and how others behave toward them. Sensitivity is required to interpret individuals' expressions of desire not to participate, while simultaneously it is important to try to interpret why they want to refrain.

  • 13.
    Ericsson, Iréne
    et al.
    Jönköping University, Sweden.
    Kjellström, Sofia
    Jönköping University, Sweden.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Creating relationships with persons with moderate to severe dementia2013In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 12, no 1, p. 63-79Article in journal (Refereed)
    Abstract [en]

    The study describes how relationships are created with persons with moderate to severe dementia. The material comprises 24 video sequences of Relational Time (RT) sessions, 24 interviews with persons with dementia and eight interviews with professional caregivers. The study method was Constructivist Grounded Theory. The categories of 'Assigning time', 'Establishing security and trust' and 'Communicating equality' were strategies for arriving at the core category, 'Opening up', which was the process that led to creating relationships. Both parties had to contribute to create a relationship; the professional caregiver controlled the process, but the person with dementia permitted the caregiver's overtures and opened up, thus making the relationship possible. Interpersonal relationships are significant to enhancing the well-being of persons with dementia. Small measures like RT that do not require major resources can open paths to creating relationships.

  • 14.
    Eriksson, Henrik
    et al.
    Mälardalens University, Eskilstuna, Sweden.
    Sandberg, Jonas
    Jönköping University, Sweden; Ersta Sköndal university college and Ersta hospice clinic, Stockholm, Sweden.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Experiences of long-term home care as an informal caregiver to a spouse: gendered meanings in everyday life for female carers2013In: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 8, no 2, p. 159-165Article in journal (Refereed)
    Abstract [en]

    AIMS AND OBJECTIVES: In this article, we explore the gender aspects of long-term caregiving from the perspective of women providing home care for a spouse suffering from dementia.

    BACKGROUND: One of the most common circumstances in which a woman gradually steps into a long-term caregiver role at home involves caring for a spouse suffering from dementia. Little attention has been paid to examining the experiences and motivations of such caregivers from a feminist perspective.

    METHODS: Twelve women, all of whom were informal caregivers to a partner suffering from dementia, were interviewed on the following themes: the home, their partner's disease, everyday life, their relationship and autonomy. The results of these interviews were analysed in relation to gender identity and social power structures using a feminist perspective.

    RESULTS: The findings of this study show that the informants frequently reflected on their caregiving activities in terms of both general and heteronormative expectations. The results suggest that the process of heteropolarisation in these cases can be an understood as a consequence of both the spouse's illness and the resulting caring duties. Also, the results suggest that the act of caring leads to introspections concerning perceived 'shortcomings' as a caregiver. Finally, the results indicate that it is important to recognise when the need for support in day-to-day caring is downplayed.

    CONCLUSIONS: Women view their caregiving role and responsibilities as paramount; their other duties, including caring for themselves, are deemed less important. We stress that the intense commitment and responsibilities that women experience in their day-to-day caring must be acknowledged and that it is important for healthcare professionals to find mechanisms for providing choices for female caregivers without neglecting their moral concerns.

    IMPLICATIONS FOR PRACTICE: Female carers face difficulties in always living up to gendered standards and this need to be considered when evaluating policies and practices for family carers.

  • 15.
    Harding, Andrew J. E.
    et al.
    Univ Lancaster, England.
    Morbey, Hazel
    Univ Lancaster, England.
    Ahmed, Faraz
    Univ Lancaster, England.
    Opdebeeck, Carol
    Manchester Metropolitan Univ, England.
    Lasrado, Reena
    Univ Manchester, England.
    Williamson, Paula R.
    Univ Liverpool, England; Med Res Council North West Hub Trials Methodol Re, England.
    Swarbrick, Caroline
    Univ Manchester, England.
    Leroi, Iracema
    Univ Manchester, England.
    Challis, David
    Univ Manchester, England.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Burns, Alistair
    Univ Manchester, England.
    Keady, John
    Univ Manchester, England; Greater Manchester Mental Hlth NHS Fdn Trust, England.
    Reilly, Siobhan T.
    Univ Lancaster, England.
    What is important to people living with dementia?: the "long-list of outcome items in the development of a core outcome set for use in the evaluation of non-pharmacological community-based health and social care interventions2019In: BMC Geriatrics, ISSN 1471-2318, E-ISSN 1471-2318, Vol. 19, article id 94Article in journal (Refereed)
    Abstract [en]

    BackgroundCore outcome sets (COS) prioritise outcomes based on their importance to key stakeholders, reduce reporting bias and increase comparability across studies. The first phase of a COS study is to form a long-list of outcomes. Key stakeholders then decide on their importance. COS reporting is described as suboptimal and this first phase is often under-reported. Our objective was to develop a long-list of outcome items for non-pharmacological interventions for people with dementia living at home.MethodsThree iterative phases were conducted. First, people living with dementia, care partners, health and social care professionals, policymakers and researchers (n=55) took part in interviews or focus groups and were asked which outcomes were important. Second, existing dementia trials were identified from the ALOIS database. 248 of 1009 pharmacological studies met the inclusion criteria. Primary and secondary outcomes were extracted from a 50% random sample (n=124) along with eight key reviews/qualitative papers and 38 policy documents. Third, extracted outcome items were translated onto an existing qualitative framework and mapped into domains. The research team removed areas of duplication and refined the long-list in eight workshops.ResultsOne hundred seventy outcome items were extracted from the qualitative data and literature. The 170 outcome items were consolidated to 54 in four domains (Self-Managing Dementia Symptoms, Quality of Life, Friendly Neighbourhood amp; Home, Independence).ConclusionsThis paper presents a transparent blueprint for long-list development. Though a useful resource in their own right, the 54 outcome items will be distilled further in a modified Delphi survey and consensus meeting to identify core outcomes.

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  • 16.
    Harding, Andrew J. E.
    et al.
    Univ Lancaster, England.
    Morbey, Hazel
    Univ Lancaster, England.
    Ahmed, Faraz
    Univ Lancaster, England.
    Opdebeeck, Carol
    Manchester Metropolitan Univ, England.
    Wang, Ying-Ying
    Univ Lancaster, England.
    Williamson, Paula
    Univ Liverpool, England.
    Swarbrick, Caroline
    Univ Manchester, England.
    Leroi, Iracema
    Univ Manchester, England.
    Challis, David
    Univ Manchester, England.
    Davies, Linda
    Univ Manchester, England.
    Reeves, David
    Univ Manchester, England.
    Holland, Fiona
    Univ Manchester, England.
    Hann, Mark
    Univ Manchester, England.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland.
    Hydén, Lars-Christer
    Linköping University, Department of Social and Welfare Studies, Division Ageing and Social Change. Linköping University, Faculty of Arts and Sciences.
    Burns, Alistair
    Univ Manchester, England.
    Keady, John
    Univ Manchester, England; Greater Manchester Mental Hlth NHS Fdn Trust, England.
    Reilly, Siobhan
    Univ Lancaster, England.
    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 interventions2018In: Trials, ISSN 1745-6215, E-ISSN 1745-6215, Vol. 19, article id 247Article in journal (Refereed)
    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.

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  • 17.
    Hedman, Ragnhild
    et al.
    Karolinska Institute, Sweden; Ersta Skondal University of Coll, Sweden.
    Hansebo, Görel
    Karolinska Institute, Sweden; Ersta Skondal University of Coll, Sweden.
    Ternestedt, Britt-Marie
    Karolinska Institute, Sweden; Ersta Skondal University of Coll, Sweden.
    Hellström, Ingrid
    Linköping University, Faculty of Medicine and Health Sciences. Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Ersta Sköndal University of Coll, Sweden.
    Norberg, Astrid
    Ersta Skondal University of Coll, Sweden; Umeå University, Sweden.
    Expressed Sense of Self by People With Alzheimers Disease in a Support Group Interpreted in Terms of Agency and Communion2016In: Journal of Applied Gerontology, ISSN 0733-4648, E-ISSN 1552-4523, Vol. 35, no 4, p. 421-443Article in journal (Refereed)
    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.

  • 18.
    Hedman, Ragnhild
    et al.
    Ersta Sköndal University College, Sweden; Karolinska Institutet, Sweden.
    Hansebo, Görel
    Ersta Sköndal University College, Sweden; Karolinska Institutet, Sweden.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Sweden; Karolinska Institutet, Sweden.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Norberg, Astrid
    Ersta Sköndal University College, Sweden; Umeå University, Sweden.
    How people with Alzheimer's disease express their sense of self: analysis using Rom Harré's theory of selfhood2013In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 12, no 6, p. 713-733Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to use Harré's social constructionist theory of selfhood to describe how people with mild and moderate Alzheimer's disease (AD) express their sense of self. The findings show that Self 1, the embodied sense of being a person, was expressed fluently by participants through the use of first-person indexicals. Self 2, the experienced personal attributes and life narrative, had undergone changes. Those changes were not entirely for the worse; participants had also developed new skills in managing life with AD. In a lifetime perspective, those changes were minor and participants perceived themselves to be basically the same people that they were before having AD. When constructing Self 3, the social personae, participants usually described being supported by others, but sometimes described being exposed to malignant positioning. They also feared that they might become more exposed to negative attitudes as their AD progressed. However, participants were understanding towards the offensive behaviours of others.

  • 19.
    Hedman, Ragnhild
    et al.
    Karolinska Institute, Sweden Ersta Skondal University of Coll, Sweden Ersta Skondal University of Coll, Sweden .
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Ternestedt, Britt-Marie
    Karolinska Institute, Sweden Ersta Skondal University of Coll, Sweden .
    Hansebo, Gorel
    Karolinska Institute, Sweden Ersta Skondal University of Coll, Sweden .
    Norberg, Astrid
    Ersta Skondal University of Coll, Sweden Umeå University, Sweden .
    Social positioning by people with Alzheimers disease in a support group2014In: Journal of Aging Studies, ISSN 0890-4065, E-ISSN 1879-193X, Vol. 28, p. 11-21Article in journal (Refereed)
    Abstract [en]

    People with Alzheimers disease (AD) are often negatively positioned by others, resulting in difficulties upholding a positive sense of self. This might cause them to withdraw socially and apparently lose their minds. Conversely, the sense of self can be strengthened with the support from others. This study aimed to describe, in accordance with positioning theory, how people with moderate AD positioned themselves and each other in a support group for people with AD. We describe five first-order positions; the project manager, the storyteller, the moral agent, the person burdened with AD, and the coping person. In the interactions that followed among the support group participants, those positions were mainly affirmed. This enabled participants to construct strong and agentic personae, and to have the severity of their illness acknowledged. Despite their language impairment participants managed to position and reposition themselves and others by assistance of the trained facilitator.

  • 20.
    Hedman, Ragnhild
    et al.
    Karolinska Inst, Sweden; Ersta Skondal Univ Coll, Sweden.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland. Ersta Sköndal Univ Coll, Sweden.
    Ternestedt, Britt-Marie
    Karolinska Inst, Sweden; Ersta Sköndal Univ Coll, Sweden.
    Hansebo, Görel
    Karolinska Inst, Sweden; Ersta Skondal Univ Coll, Sweden.
    Norberg, Astrid
    Ersta Skondal Univ Coll, Sweden; Umea Univ, Sweden.
    Sense of Self in Alzheimers Research Participants2018In: Clinical Nursing Research, ISSN 1054-7738, E-ISSN 1552-3799, Vol. 27, no 2, p. 191-212Article in journal (Refereed)
    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.

  • 21.
    Hedman, Ragnhild
    et al.
    Ersta Skondal Bracke Univ, Sweden; Ersta Skondal Univ Coll, Sweden.
    Norberg, Astrid
    Ersta Skondal Bracke Univ, Sweden; Ersta Skondal Univ Coll, Sweden; Umea Univ, Sweden.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Ersta Skondal Bracke Univ, Sweden; Ersta Skondal Univ Coll, Sweden.
    Agency and Communion in People with Alzheimers Disease, as Described by Themselves and their Spousal Carers2019In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 18, no 4, p. 1354-1372Article in journal (Refereed)
    Abstract [en]

    Agency (individuality) and communion (togetherness) are vital to a positive sense of self. People with Alzheimers disease are at risk of experiencing diminished agency and decreased communion. Their family members, especially their partners, view on their agency and communion is also likely to influence their sense of agency, communion, and self. In the present study, individual interviews with 10 people with Alzheimers disease and their spousal carers were qualitatively analysed to describe how in each couple the two spouses viewed the agency and communion of the person with Alzheimers disease from an individual perspective. The findings show that the carers generally described the agency of the person with Alzheimers disease as slightly weaker compared with the persons with Alzheimers disease themselves. The carers also appeared to have poor knowledge of what supported and threatened the sense of communion of the person with Alzheimers disease.

  • 22.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Health, Activity, Care. Linköping University, Faculty of Health Sciences.
    Dignity and elderly spouses with dementia2009In: Dignity in Care for Older People / [ed] Lennart Nordenfelt, Chichester: Wiley-Blackwell, 2009, 1, p. 99-116Chapter in book (Other academic)
    Abstract [en]

    The notion of quality of life has for several decades been well-established in ethical debate about health care and the care of older people. Dignity in Care for Older People  highlights the notion of dignity within the care of the elderly, focusing on the importance of theoretical concepts.  Primarily based on a Research Project, Dignity and Older Europeans, funded by the European Commission, this book provides a thorough investigation of the concept of dignity and related concepts such as quality of life and autonomy. It includes a chapter devoted to the dignity of human embodiment, emphasizing the importance of the notion of the lived body in the context of elderly care. As a result of the conceptual study a model of dignity emerges in which four variants of dignity stand out: dignity of merit, dignity as moral status, dignity of identity and Menschenwurde (the specifically human value). From this follows a discussion of how these variants of dignity can be used in characterizing the care of the elderly. The notions of dignity and dignified care are discussed particularly in relation to demented persons and dying persons.The book also contains a chapter on the dignity of the dead person.  International in focus,  Dignity in Care for Older People  provides a contemporary discussion of the care of older people, and will be of use to qualified nurses and social care practitioners working with older people, as well as those on ethics and gerontology courses.

  • 23.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    I’m his wife not his carer! - Dignity and couplehood in dementia.: dignity and couplehood in dementia2014In: Beyond Loss: dementia, identity, personhood / [ed] Lars-Christer Hydén, Hilde Lindemann, Jens Brockmeier, Oxford: Oxford University Press, 2014, p. 53-66Chapter in book (Refereed)
  • 24. Order onlineBuy this publication >>
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Health Sciences.
    Parrelationer i förändring vid demenssjukdom: en studie med konstruktivistisk grundad teori2005Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    The overall aim of this thesis is to gain a better understanding how people with dementia and their spouses experience dementia over time, especially the impact it has on their inter-personal relationships and patterns of everyday life. Data were collected using separate semi-structured interviews with 20 persons with dementia and their spouses of 6 monthly intervals over an 18-months period (132 interviews in total), and analysed using constructivist grounded theory.

    Analysis suggested that whilst spouses are aware of and acknowledge the diagnosis of dementia, they do not routinely talk about it but rather the focus of their combined efforts is on making life as meaningful as possible. To do this couples, rather than individuals, actively ‘work together’ to create a ‘nurturative relational context’ in order to sustain the quality of their relationship, and maintain the self-image and sense of agency of the person with dementia.

    In order to create a ‘nurturative relational context’ couples continued to ‘do things together’ for as long as possible by understanding complementary roles underpinned by a mutual appreciation of each others contribution in a way that builds upon the remaining strengths of the person with dementia. Their focus is therefore on ‘couplehood’ as much as ‘personhood’.

    An analysis of the complete data set identified three temporally sequenced but overlapping phases of the experience of couplehood termed ‘sustaining couplehood’, ‘maintaining involvement’, and ‘becoming alone’. ‘Sustaining couplehood’ had the primary goal of ensuring that the spuses’ ‘work’. This involved four interrelated sets of activities: talking things through, in order to ensure good communication and acknowledge and value differences; being affectionate and appreciative by demonstrating continued attractiveness to their spouse; making the most of things by enjoying everyday pleasures, looking for positive interpretations of events and focussing on the present (living for today); and finally, keeping the peace by being aware of potential points of friction and not responding to difficult behaviour. Both the person with dementia and the non-affected spouse were active strategies in the above process.

    In addition both spouses worked to ‘maintain the involvement’ of the person with dementia by ensuring that they had an active role to play. However, despite their efforts, eventually the non-affected spouse took on an increasing role and this occurred in a number of ways, either by the person with dementia consciously ‘handing over’ responsibility or more passively ‘letting go’, or by the non-affected spouse ‘taking over’.

    ‘Sustaining couplehood’ and ‘maintaining involvement’ often occurred simultaneously but the relative emphasis changed over time as ‘sustaining couplehood’ became more difficult and increasing effort was expended in ‘maintaining involvement’. As this occurred the data suggested that the non-affected spouse became increasingly ‘alone’ as the dementia progressed. This process has yet to be fully explored, however, it is clear that for spouses a complete understanding of the dementia experience is not possible without consideration of ‘couplehood’.

    List of papers
    1. Awareness context theory and the dynamics of dementia: Improving understanding using emergent fit
    Open this publication in new window or tab >>Awareness context theory and the dynamics of dementia: Improving understanding using emergent fit
    2005 (English)In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 4, no 2, p. 269-295Article in journal (Refereed) Published
    Abstract [en]

    This article presents the initial results of an ongoing constructivistgrounded theory study (Charmaz, 2000) exploringthe impact of dementia on the everyday life and relationships of older spousal couples. Using a processof ‘emergent fit’ (Glaser, 1978)and drawing upon data from 74 interviews with 20 spouse couples living with dementia, it considers the relevanceof ‘awareness context theory’ (Glaser& Strauss, 1965) and the ‘dynamicsof dementia’ (Keady, 1999) to an understanding of interpersonal relationships among spouses. The combinationof existing literature and new data providefurther insights into how couples actively work to ‘construct’ awareness in a way that, forthe majority, maintains both a sense of ‘self’for the person with dementia (PWD) and the integrityof the relationship between couples. It is suggested that a‘mutual acknowledgement’ of thediagnosis and a subsequent focus on maintaininga meaningful life in the present combine to create a ‘nurturative relational context’ in whichliving with dementia unfolds.

    Keywords
    awareness contexts, dynamics of dementia, grounded theory, spousal relationships
    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:liu:diva-13345 (URN)10.1177/1471301205051096 (DOI)
    Available from: 2005-09-02 Created: 2005-09-02 Last updated: 2017-12-13Bibliographically approved
    2. We do things together: A case study of couplehood
    Open this publication in new window or tab >>We do things together: A case study of couplehood
    2005 (English)In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 4, no 1, p. 7-22Article in journal (Refereed) Published
    Abstract [en]

    The value of the single case study is well established in dementiacare with the seminal contributions of Alzheimerand Kitwood being based on the study of individuals.This article presents a case study of an elderly married coupleliving with dementia and explores how theirrelationship has continued to flourish. In drawingon their story we highlight ways in which both partners seekto ‘maintain involvement’ of theperson with dementia (PWD) (Keady, 1999), andconsider the various types of ‘work’ that is required. We suggest that whilst the ‘personhood’of the PWD as an individual has received muchrecent attention, a consideration of ‘couplehood’is also essential to a full understanding of how spouses live with and respond to the impact of dementia.

    Place, publisher, year, edition, pages
    Sage Publications, 2005
    Keywords
    couplehood, dementia, maintaining involvement
    National Category
    Social Sciences
    Identifiers
    urn:nbn:se:liu:diva-13346 (URN)10.1177/1471301205049188 (DOI)
    Available from: 2005-09-02 Created: 2005-09-02 Last updated: 2017-12-13Bibliographically approved
    3. Sustaining 'couplehood': Spouses' strategies for living positively with dementia
    Open this publication in new window or tab >>Sustaining 'couplehood': Spouses' strategies for living positively with dementia
    2007 (English)In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 6, no 3, p. 383-409Article in journal (Refereed) Published
    Abstract [en]

    This article explores the strategies that spouses use in order to live positively when one partner has dementia. Data were collected from 152 interviews with 20 couples conducted over a period of five years. Using a constructivist grounded theory methodology, data were analysed to capture the main processes involved and charted how these changed over time. Three main phases were identified termed: `sustaining couplehood'; `maintaining involvement'; and `moving on', that operated in an iterative rather than linear fashion. The data highlight the very active role played by both partners, especially in the early stages of the disease, as they strive to maintain the quality and closeness of their relationship by creating what we term a `nurturative relational context'. The diverse strategies that the couples adopt are presented, and the gradual way in which the person with dementia `hands over' or `let's go' of responsibility to their partner is described. The article provides several new insights into the nature of spousal relationships in dementia and the ways in which they seek to maximize their quality of life, and, wherever possible, sustain couplehood.

    Keywords
    couplehood, dementia, grounded theory, spousal relationships
    National Category
    Nursing
    Identifiers
    urn:nbn:se:liu:diva-13347 (URN)10.1177/1471301207081571 (DOI)
    Available from: 2005-09-02 Created: 2005-09-02 Last updated: 2017-12-13
    4. Ethical and methodological issues in interviewing persons with dementia
    Open this publication in new window or tab >>Ethical and methodological issues in interviewing persons with dementia
    2007 (English)In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 14, no 5, p. 608-619Article in journal (Refereed) Published
    Abstract [en]

    People with dementia have previously not been active participants in research, with ethical difficulties often being cited as the reason for this. A wider inclusion of people with dementia in research raises several ethical and methodological challenges. This article adds to the emerging debate by reflecting on the ethical and methodological issues raised during an interview study involving people with dementia and their spouses. The study sought to explore the impact of living with dementia. We argue that there is support for the inclusion of people with dementia in research and that the benefits of participation usually far outweigh the risks, particularly when a ;safe context' has been created. The role of gatekeepers as potentially responsible for excluding people with dementia needs further consideration, with particular reference to the appropriateness of viewing consent as a primarily cognitive, universalistic and exclusionary event as opposed to a more particularistic, inclusive and context relevant process.

    Place, publisher, year, edition, pages
    Sage Publications, 2007
    Keywords
    dementia, ethical considerations, informed consent
    National Category
    Medical Ethics Nursing
    Identifiers
    urn:nbn:se:liu:diva-13348 (URN)10.1177/0969733007080206 (DOI)17901172 (PubMedID)
    Available from: 2005-09-02 Created: 2005-09-02 Last updated: 2017-12-13
    Download full text (pdf)
    FULLTEXT01
  • 25.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences.
    Vardag och samspel hemma eller på hemmet2016In: Att leva med demens / [ed] Ingrid Hellström & Lars-Christer Hydén, Malmö: Gleerups Utbildning AB, 2016, 1, p. 51-53Chapter in book (Other academic)
  • 26.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Health, Activity, Care. Linköping University, Faculty of Health Sciences.
    Värdighet och äldre makar med demens2010In: Värdighet i vården av äldre personer / [ed] Lennart Nordenfelt, Lund: Studentlitteratur, 2010Chapter in book (Other academic)
    Abstract [sv]

    I flera årtionden har livskvalitet varit ett vedertaget begrepp i den etiska diskussionen om hälso- och sjukvården och vården av äldre. På senare tid har dock begreppet värdighet kommit att ta en större plats i denna diskussion. Värdighet i vården av äldre personer belyser begreppet värdighet inom äldreomsorgen och fokuserar på vikten av teoretiska begrepp. Boken baseras till största delen på forskningsprojektet Dignity and older Europeans och den beskriver ingående begreppet värdighet samt relaterade begrepp som livskvalitet och autonomi. Begreppsundersökningen resulterar i en värdighetsmodell med fyra varianter av värdighet: meritvärdighet, den moraliska resningens värdighet, identitetsvärdighet och människovärdet (Menschenwürde, det specifikt mänskliga värdet). Av detta följer en diskussion om hur dessa varianter av värdighet kan tillämpas för att karaktärisera vården av äldre. Begreppen värdighet och värdig vård diskuteras, särskilt i samband med personer med demens och döende personer. Boken innehåller också ett kapitel om den döda personens värdighet. Genom dess internationella perspektiv ger Värdighet i vården av äldre personer ett högst aktuellt bidrag till den pågående diskussionen om vården av äldre. Boken vänder sig till blivande och redan yrkesverksamma sjuksköterskor samt personer inom den sociala omsorgen som arbetar med äldre.

  • 27.
    Hellström, Ingrid
    et al.
    Linköping University, Department of Social and Welfare Studies, Health, Activity, Care. Linköping University, Faculty of Health Sciences.
    Carlander, Ida
    Ersta Sköndal högskola.
    Närstående i hemsjukvården2010In: Hemsjukvård / [ed] Eva Drevenhorn, Lund: Studentlitteratur, 2010, p. 75-90Chapter in book (Other academic)
    Abstract [sv]

    Hemsjukvård är basen för och utgör även den största delen av Sveriges sjukvård. Av den anledningen förtjänar hemsjukvården att lyftas och få en egen bok som belyser ämnet. Att arbeta i hemsjukvård innebär en stor utmaning eftersom det inte finns några gränser för vilka olika sjukdomstillstånd, åldersgrupper eller funktionsnedsättning som finns representerade där. Den här boken är en introduktion till hemsjukvård och tänkt att ge en insyn i vad hemsjukvård kan innebära i ett omvårdnadsperspektiv. Boken speglar den specialistutbildade sjuksköterskans roll och förhållningssätt i arbetet. Innehållet i boken lämpar sig i första hand till sjuksköterskestudenter som vill få en inblick i vad hemsjukvård kan innebära, men också för sjuksköterskor i specialistutbildningar och andra intresserade.

  • 28.
    Hellström, Ingrid
    et al.
    Linköping University, Department of Social and Welfare Studies, Health, Activity, Care. Linköping University, Faculty of Health Sciences.
    Dwyer, Lise-Lotte
    Ersta Sköndal högskola.
    Ett värdigt möte i vardagen2010In: Äldres hälsa och ohälsa: en introduktion till geriatrisk omvårdnad / [ed] Anna Ekvall, Lund: Studentlitteratur, 2010, p. 29-40Chapter in book (Other academic)
    Abstract [sv]

    Att möta och vårda äldre personer kräver omfattande kunskap och ständig uppdatering inom en rad olika områden. Detta är nödvändigt för att till fullo förstå och hantera äldre personers ofta komplexa hälsosituation. Denna bok syftar till att ge en heltäckande och aktuell översikt av såväl äldres hälsa som ohälsa. Inledningsvis redogör författarna för olika teorier om åldrandet och döendet och tar också upp områden som förebyggande arbete, livskvalitet och aktivitet. Därefter görs en grundlig genomgång av det fysiologiska åldrandet, fysisk och psykisk ohälsa samt de vanligaste sjukdomstillstånden och hur dessa behandlas. Boken belyser även det akuta omhändertagandet av en äldre person, vilket får allt större relevans i dagens akutsjukvård eftersom en stor andel av patienterna är äldre. Ytterligare frågor som tas upp i boken är t.ex. äldre i samhället, lagstiftning, informell vård, genus, etnicitet, värdighet samt möten i vården. Författarna representerar ett brett ämnes- och kunskapsmässigt fält. De har olika bakgrund som sjuksköterskor, arbetsterapeuter, tandläkare och läkare. De flesta är dessutom disputerade inom sina respektive områden och har en omfattande klinisk förankring. Detta gör boken Äldres hälsa och ohälsa till en av de mest aktuella och relevanta böckerna inom området i dag. Boken vänder sig till universitets- och högskolestuderande på grundläggande nivå. Den är också av intresse för kliniskt verksamma inom kommuner, landsting och prehospital vård.

  • 29.
    Hellström, Ingrid
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences.
    Eriksson, Henrik
    The Red Cross University College, Stockholm, Sweden.
    Sandberg, Jonas
    Department of Nursing, School of Health Science, Jönköping, Sweden; Palliative Research Centre, Ersta Sk€ondal University College, Stockholm, Sweden.
    Chores and sense of self: Gendered understandings of voices of older married women with dementia2015In: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 10, no 2, p. 127-135Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:

    Marital relationships in dementia are forged between the person with dementia and the care partner, and such relationships have an impact on the way in which dementia is understood and experienced. The everyday work that underpins the relationship is usually divided between spouses and based on traditional divisions of household chores.

    AIMS AND OBJECTIVES:

    The aim was to describe how older women with dementia express the importance of their homes and their chores in everyday life.

    METHODS:

    Seven women with dementia, who were cohabiting with their husbands, were interviewed on up to five occasions at home during a five-to-six-year period on the following themes: the home, their dementia illness, everyday life, their relationships with their husbands and dignity and autonomy.

    RESULTS:

    The qualitative analysis showed three different patterns in the women's narratives: keeping the core of the self through the home, keeping the self through polarising division of labour and keeping the self through (re-) negotiations of responsibilities. The feeling of one's home and home-related chores is an essential way to express who you are.

    CONCLUSION:

    The women stated that household chores are the centre of their lives despite their dementia disease and that the home, even though it shrinks, still makes the women see themselves as an important person, namely the 'competent wife'.

    IMPLICATIONS FOR PRACTICE:

    Nurses need to be aware that 'doing gender' may be a means of preserving personhood as well as of sustaining couplehood in dementia.

  • 30.
    Hellström, Ingrid
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Ersta Skondal University of Coll, Sweden.
    Hakanson, Cecilia
    Ersta Skondal University of Coll, Sweden; Karolinska Institute, Sweden.
    Eriksson, Henrik
    Swedish Red Cross University of Coll, Sweden.
    Sandberg, Jonas
    Jönköping University, Sweden.
    Development of older mens caregiving roles for wives with dementia2017In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 31, no 4, p. 957-964Article in journal (Refereed)
    Abstract [en]

    This secondary analysis of qualitative interviews describes how older Swedish men approach the caregiver role for a wife with dementia, over time. An increasing number of male caregivers will become primary caregivers for partners living with dementia at home, and they will likely be caregivers for an extended period of time. It has been stated that caregiving experiences influence how older men think of themselves. The theoretical starting point is a constructivist position, offering an understanding of older caregiving mens constructions and reconstructions of themselves and their caregiver roles. Seven men, who were cohabiting with their wives, were interviewed on up to five occasions at home during a 5- to 6-year period. The findings comprise three themes; me and it, me despite it, it is me, depict how these men gradually take on and normalise the caregiving tasks, and how they develop and internalise a language based on their caring activities. The results provide understanding about the relationship between men as caregivers and how this influences them as individuals. By careful attention to each caregiving mans individual needs rather than making gendered assumptions about men and caring, the aim of the caregiver support for men might best target mens own meaning to the caring in their the everyday practices.

  • 31.
    Hellström, Ingrid
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences.
    Hydén, Lars-ChristerLinköping University, NISAL - National Institute for the Study of Ageing and Later Life. Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Arts and Sciences.
    Att leva med demens2016Collection (editor) (Other academic)
    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.

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  • 32.
    Hellström, Ingrid
    et al.
    Linköping University, Department of Social and Welfare Studies, Health, Activity, Care. Linköping University, Faculty of Health Sciences.
    Nolan, Mike
    Sheffield University, UK.
    Time together2010In: Time for dementia: a collection of writings on the meanings of time and dementia / [ed] Jane Gilliard, Mary Marshall, London: Hawker Publications Ltd , 2010Chapter in book (Other (popular science, discussion, etc.))
  • 33.
    Hellström, Ingrid
    et al.
    Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Health Sciences.
    Nolan, Mike
    University of Sheffield, UK.
    Lundh, Ulla
    Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Health Sciences.
    Sustaining 'couplehood': Spouses' strategies for living positively with dementia2007In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 6, no 3, p. 383-409Article in journal (Refereed)
    Abstract [en]

    This article explores the strategies that spouses use in order to live positively when one partner has dementia. Data were collected from 152 interviews with 20 couples conducted over a period of five years. Using a constructivist grounded theory methodology, data were analysed to capture the main processes involved and charted how these changed over time. Three main phases were identified termed: `sustaining couplehood'; `maintaining involvement'; and `moving on', that operated in an iterative rather than linear fashion. The data highlight the very active role played by both partners, especially in the early stages of the disease, as they strive to maintain the quality and closeness of their relationship by creating what we term a `nurturative relational context'. The diverse strategies that the couples adopt are presented, and the gradual way in which the person with dementia `hands over' or `let's go' of responsibility to their partner is described. The article provides several new insights into the nature of spousal relationships in dementia and the ways in which they seek to maximize their quality of life, and, wherever possible, sustain couplehood.

  • 34.
    Hellström, Ingrid
    et al.
    Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Health Sciences.
    Nolan, Mike
    University of Sheffield, UK.
    Lundh, Ulla
    Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Health Sciences.
    We do things together: A case study of couplehood2005In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 4, no 1, p. 7-22Article in journal (Refereed)
    Abstract [en]

    The value of the single case study is well established in dementiacare with the seminal contributions of Alzheimerand Kitwood being based on the study of individuals.This article presents a case study of an elderly married coupleliving with dementia and explores how theirrelationship has continued to flourish. In drawingon their story we highlight ways in which both partners seekto ‘maintain involvement’ of theperson with dementia (PWD) (Keady, 1999), andconsider the various types of ‘work’ that is required. We suggest that whilst the ‘personhood’of the PWD as an individual has received muchrecent attention, a consideration of ‘couplehood’is also essential to a full understanding of how spouses live with and respond to the impact of dementia.

  • 35.
    Hellström, Ingrid
    et al.
    Ersta Sköndal University College, Stockholm, Sweden.
    Nolan, Mike
    University of Sheffield, UK .
    Nordenfelt, Lennart
    Linköping University, Department of Medical and Health Sciences, Health and Society. Linköping University, Faculty of Arts and Sciences.
    Lundh, Ulla
    Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Health Sciences.
    Ethical and methodological issues in interviewing persons with dementia2007In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 14, no 5, p. 608-619Article in journal (Refereed)
    Abstract [en]

    People with dementia have previously not been active participants in research, with ethical difficulties often being cited as the reason for this. A wider inclusion of people with dementia in research raises several ethical and methodological challenges. This article adds to the emerging debate by reflecting on the ethical and methodological issues raised during an interview study involving people with dementia and their spouses. The study sought to explore the impact of living with dementia. We argue that there is support for the inclusion of people with dementia in research and that the benefits of participation usually far outweigh the risks, particularly when a ;safe context' has been created. The role of gatekeepers as potentially responsible for excluding people with dementia needs further consideration, with particular reference to the appropriateness of viewing consent as a primarily cognitive, universalistic and exclusionary event as opposed to a more particularistic, inclusive and context relevant process.

  • 36.
    Hellström, Ingrid
    et al.
    Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Health Sciences.
    Nolan, Mike
    University of Sheffield, UK.
    Ulla, Lundh
    Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Health Sciences.
    Awareness context theory and the dynamics of dementia: Improving understanding using emergent fit2005In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 4, no 2, p. 269-295Article in journal (Refereed)
    Abstract [en]

    This article presents the initial results of an ongoing constructivistgrounded theory study (Charmaz, 2000) exploringthe impact of dementia on the everyday life and relationships of older spousal couples. Using a processof ‘emergent fit’ (Glaser, 1978)and drawing upon data from 74 interviews with 20 spouse couples living with dementia, it considers the relevanceof ‘awareness context theory’ (Glaser& Strauss, 1965) and the ‘dynamicsof dementia’ (Keady, 1999) to an understanding of interpersonal relationships among spouses. The combinationof existing literature and new data providefurther insights into how couples actively work to ‘construct’ awareness in a way that, forthe majority, maintains both a sense of ‘self’for the person with dementia (PWD) and the integrityof the relationship between couples. It is suggested that a‘mutual acknowledgement’ of thediagnosis and a subsequent focus on maintaininga meaningful life in the present combine to create a ‘nurturative relational context’ in whichliving with dementia unfolds.

  • 37.
    Hellström, Ingrid
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Taghizadeh Larsson, Annika
    Linköping University, Department of Social and Welfare Studies, Division Ageing and Social Change. Linköping University, Faculty of Arts and Sciences.
    Dementia as chronic illness: Maintaining involvement in everyday life2017In: Living with Dementia: Relations, Responses and Agency in EverydayLife / [ed] L-C Hydén & E. Antelius, London: Palgrave Macmillan, 2017, p. 136-148Chapter in book (Refereed)
  • 38.
    Hellström, Ingrid
    et al.
    Linköping University, Department of Social and Welfare Studies, Health, Activity, Care. Linköping University, Faculty of Health Sciences.
    Torres, Sandra
    Uppsala University, Sweden .
    A wish to know but not always tell - couples living with dementia talk about disclosure preferences2013In: Aging & Mental Health, ISSN 1360-7863, E-ISSN 1364-6915, Vol. 17, no 2, p. 157-167Article in journal (Refereed)
    Abstract [en]

    Most research on disclosure issues in dementia has focused on what it is like to receive a dementia diagnosis. Little is known about the disclosure preferences that people with dementia and their cohabiting spouses have. In this study, we explore disclosure preferences and focus on what couples living with dementia want to know and tell about the disease. The study is based on 40 qualitative interviews (20 with people with dementia and 20 with their spouses). The analysis revealed five preference patterns regarding what the couples wanted to know and how they felt about sharing information concerning the disease with others. The patterns have been called: (1) want to know and tell (no reservations about it); (2) want to know and tell (some reservations about it); (3) want to know but do not want to tell; (4) want to know but cannot decide if we want to tell and (5) cannot agree on either knowing or telling. They show that couples preferences about what they want to know are related to what they are willing to tell. The findings also show that it is usually the preferences of the person that has a dementia diagnosis that guide the stand that couples take as far as disclosure issues are concerned. Thus, the findings show the type of interdependence that exists when one person in a couple has received the diagnosis, and the life of the two people as a couple is challenged as a result of this.

  • 39.
    Hellström, Ingrid
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Torres, Sandra
    Uppsala University, Sweden.
    The "not yet" horizon: Understandings of the future amongst couples living with dementia2016In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 15, no 6, p. 1562-1585Article in journal (Refereed)
    Abstract [en]

    The way in which persons with dementia and their spouses regard the future could influence how they experience the disease itself. This study aims to explore how the future is understood by couples living with dementia. The analysis reveals different ways in which couples understand the future. The findings show that persons with dementia describe the here and now in ways that take the gloomy future they dread as a point of reference, and as a result of this, they operate in what we term the not yet horizon. But while they take for granted that there is a horizon that they have not yet reached, their spouses always seem to focus on the horizons that they have already crossed. The article discusses the findings in relation to ideas such as critical periods, existential coordinates and possible selves, and problematizes the implicit assumptions about the future that dementia researchers tend to operate from.

  • 40.
    Holmberg, Bodil
    et al.
    Ersta Skondal Bracke Univ Coll, Sweden.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Ersta Skondal Bracke Univ Coll, Sweden.
    Norberg, Astrid
    Ersta Skondal Bracke Univ Coll, Sweden; Umea Univ, Sweden.
    Osterlind, Jane
    Ersta Skondal Bracke Univ Coll, Sweden.
    Assenting to exposedness - meanings of receiving assisted bodily care in a nursing home as narrated by older persons2019In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 33, no 4, p. 868-877Article in journal (Refereed)
    Abstract [en]

    Most older persons moving to a nursing home need to receive assisted bodily care, which means being in a position of vulnerability. However, few studies have explicitly focused on the meanings of receiving assisted bodily care from the older persons perspective. This study aimed to elucidate meanings of receiving assisted bodily care, as narrated by older persons living in a nursing home. Twelve men and women, aged 80 or older, living in a Swedish nursing home, participated in the study. Data were generated by narrative interviews and analysed with a phenomenological-hermeneutical method. The regional ethics committee approved the study. In the analysis, one main theme emerged: Assenting to exposedness. This theme comprised five themes, To have hope in hopelessness, To relinquish ones body into others hands, To be between power and powerlessness, To oscillate between ones own responsibility and demands, To be in an ongoing interaction, and ten subthemes. In conclusion, receiving assisted bodily care means to be exposed, but not passively. Rather, it means to be self-determinant for as long as possible, to perceive the body as lived. When the body must be relinquished to others, it might be objectified, leading to care-suffering. To avoid this, the older persons use a certain competence, acquired through life, to decide when to take action or when to assent. However, this is but one of the several possible interpretations, which may be considered a limitation.

  • 41.
    Holmberg, Bodil
    et al.
    Ersta Skondal Bracke Univ Coll, Sweden.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Ersta Skondal Bracke Univ Coll, Sweden.
    Osterlind, Jane
    Ersta Skondal Bracke Univ Coll, Sweden.
    Being a spectator in ambiguity-Family members perceptions of assisted bodily care in a nursing home2020In: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 15, no 1, article id e12289Article in journal (Refereed)
    Abstract [en]

    Aim The aim of this study was to explore family members perceptions of assisted bodily care in a nursing home. Background Many older people living in nursing homes need assisted bodily care, provided by assistant nurses. This means exposedness, as the assistance is often provided under stress, but also brings pleasure. Family members, who may wish to and often benefit from continuing to provide assisted bodily care, are perceived as visitors and are expected to relinquish the assisted bodily care to the assistant nurses. Design This study has a qualitative design with a phenomenographic approach. Methods Data were collected through semi-structured interviews (n = 13) with family members of older people who were aged amp;gt; 80, permanently living in a nursing home, suffering from multimorbidity, and in daily need of assisted bodily care. The data were analysed using a phenomenographic method. Results Three categories of description presenting an increasing complexity were identified. The family members perceived that assisted bodily care is built upon a respect for the older persons self-determination, practically supported by assistant nurses, and complemented by family members. Conclusions In the family members perceptions, assisted bodily care signifies ambiguity, as they find themselves balancing between the older persons need for self-determination and need for help, and, further, between their trust in the assistant nurses skills and their own perceived inadequacies in intimate assisted bodily care. Implications for practice Policies that address the family members role in nursing homes are needed. Furthermore, time for collaboration is needed for assistant nurses to inform and explain care decisions, become aware of the family members perceptions of their situation and learn from them.

  • 42.
    Holmberg, Bodil
    et al.
    Ersta Skondal Bracke Univ Coll, Sweden.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Ersta Skondal Bracke Univ Coll, Sweden.
    Osterlind, Jane
    Ersta Skondal Bracke Univ Coll, Sweden.
    End-of-life care in a nursing home: Assistant nurses perspectives2019In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 26, no 6, p. 1721-1733Article in journal (Refereed)
    Abstract [en]

    Background: Worldwide, older persons lack access to palliative care. In Sweden, many older persons die in nursing homes where care is provided foremost by assistant nurses. Due to a lack of beds, admission is seldom granted until the older persons have complex care needs and are already in a palliative phase when they move in. Objective: To describe assistant nurses perspectives of providing care to older persons at the end of life in a nursing home. Research design: Data were collected in semi-structured individual interviews and analyzed with inductive qualitative content analysis. Participants and research context: Seven assistant nurses from a nursing home in Sweden were randomly selected. Ethical consideration: The research was approved by the local ethics committee. Results: Three main categories emerged; "Death a natural part of life"; "The older persons well-being"; and "Care in the moment of death"; and seven sub-categories. The assistant nurses described themselves as knowing the older persons well enough to provide good end-of-life care. This was achieved by making small-talk while providing daily care. Relying on experience-based knowledge, they strove to provide end-of-life care built upon respect and engagement with the ambition to strengthen older persons dignity, for example, by lowering the tempo of care at the end of life, in spite of organizational restrictions. Discussion: The assistant nurses offered attentive end-of-life care, focusing upon bodily care. The existential needs of the older persons were not foregrounded. Conclusion: To develop their work, and to promote an ethical foundation for such care, assistant nurses might need support and education to be able to offer a care more in line with the aims of palliative care. Furthermore, the organization of care needs to promote, not impede, the realization of this development.

  • 43.
    Keady, John
    et al.
    University of Manchester, England .
    Jones, Lesley
    Greater Manchester West Mental Health NHS Fdn Trust, England .
    Ward, Richard
    University of Stirling, Scotland .
    Koch, Susan
    Helen Macpherson Smith Institute Community Heatlh, Australia .
    Swarbrick, Caroline
    University of Manchester, England .
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Davies-Quarrell, Vivienne
    Glen Devon, Wales .
    Williams, Sion
    Bangor University, Wales .
    Introducing the bio-psycho-social-physical model of dementia through a collective case study design2013In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 22, no 19-20, p. 2768-2777Article in journal (Refereed)
    Abstract [en]

    Aims and objectives To provide evidence for the development of a physical domain attached to the well-known bio-psycho-social model of dementia. The objectives were to develop a set of international case studies that followed a trajectory approach, from prevention to end-of-life care. less thanbrgreater than less thanbrgreater thanBackground In the UK the bio-psycho-social model has informed the shape of the National Institute for Health and Clinical Excellence and the Social Care Institute for Excellence dementia guideline. However, limited attention has been paid to outlining and describing a physical domain of dementia, a discrepancy that informed the rationale for this study. less thanbrgreater than less thanbrgreater thanDesign A collective case study design was used to address the research aim and objectives. less thanbrgreater than less thanbrgreater thanMethods Case studies from along the trajectory of dementia were provided by an international team of contributors from an inter-disciplinary background comprising nursing (general and mental health), social work and social science. less thanbrgreater than less thanbrgreater thanResults The teams synthesis and analysis of the six case studies generated five repeating themes with each theme becoming components of a physical domain of dementia. The five identified physical components were: (1) physical well-being, (2) physical health and examination, (3) physical care, (4) physical treatment and (5) physical environment. less thanbrgreater than less thanbrgreater thanConclusions The development of a bio-psycho-social-physical model of dementia presents a holistic and culturally sensitive approach to understanding the experience of living with dementia, and to providing care and support in a variety of situations and contexts. less thanbrgreater than less thanbrgreater thanRelevance to clinical practice The physical domain of dementia has particular relevance to nursing and nursing practice, such as providing physical care at the end-of-life. The interplay between the biological-psychological-social-physical domains of dementia and the trajectory of dementia could form the basis of clinical decision-making and practice.

  • 44.
    Lasrado, Reena
    et al.
    Division of Nursing, Midwifery and Social Work, The University of Manchester, Manchester, United Kingdom.
    Bielsten, Therese
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Hann, Mark
    Division of Population Health, Health Services Research and Primary Care, The University of Manchester, Manchester, United Kingdom.
    Davies, Linda
    Division of Population Health, Health Services Research and Primary Care, The University of Manchester, Manchester, United Kingdom.
    Schumm, James
    IT Services, The University of Manchester, Manchester, United Kingdom.
    Reilly, Siobhan
    Division of Health Research, Lancaster University, Lancaster, United Kingdom.
    Swarbrick, Caroline
    Division of Nursing, Midwifery and Social Work, The University of Manchester, Manchester, United Kingdom.
    Keady, John
    Division of Nursing, Midwifery and Social Work, The University of Manchester, Manchester, United Kingdom.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland. Department of Health Care Science, Ersta Sköndal Bräcke University College, Stockholm, Sweden.
    Designing and Implementing a Home-Based Couple Management Guide for Couples Where One Partner has Dementia (DemPower): Protocol for a Nonrandomized Feasibility Trial2018In: JMIR Research Protocols, ISSN 1929-0748, E-ISSN 1929-0748, Vol. 7, no 8, article id e171Article in journal (Refereed)
    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.

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  • 45.
    Lundgren, Johan
    et al.
    Linköping University, Faculty of Medicine and Health Sciences. Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Region Östergötland, Local Health Care Services in East Östergötland, Department of Psychiatry in Norrköping.
    Norell Clarke, Annika
    Karlstad University, Karlstad, Sweden.
    Hellström, Ingrid
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland.
    Angelhoff, Charlotte
    Region Östergötland, Center of Paediatrics and Gynaecology and Obstetrics, H.K.H. Kronprinsessan Victorias barn- och ungdomssjukhus Linköping/Motala.
    Adolescents’ experiences of staying overnight at family-centered pediatric wards2020In: SAGE Open Nursing, ISSN 2377-9608, Vol. 6Article in journal (Refereed)
    Abstract [en]

    Background

    Sleep is essential for health and recovery. Hospital stays may affect adolescents’ sleep quality negatively as routines in the ward are not adapted for adolescents’ developmental status or sleep habits. The aims with this study were to (a) explore and describe how adolescents experience sleep in the family-centered pediatric ward, (b) explore and describe how adolescents experience the presence or absence of a parent during the hospital stay, and (c) identify circumstances that the adolescents describe as influential of their sleep in the pediatric wards.

    Methods

    This is a qualitative interview study employing thematic analysis with an inductive and exploratory approach. Sixteen adolescents aged between 13 and 17 years participated in the study.

    Results

    Three themes were found: the importance of good sleep, safety as a prerequisite for sleep in hospital, and circumstances influencing adolescents’ sleep in hospital.

    Conclusion

    The adolescents described their sleep at the pediatric ward positively, but mentioned disturbing factors associated with pain, nightly check-ups, noises, and inactivity. Parental presence was perceived as very positive both during the night and the day.

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    fulltext
  • 46.
    Lundh, Ulla
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Welfare and Care (IVV).
    Hellström, Ingrid
    Linköping University, Faculty of Arts and Sciences. Linköping University, Department of Thematic Studies.
    Nolan, Mike
    God vård vid demenssjukdom: samarbete mellan personal och anhöriga.2004In: Rapporter från hälsans provinser. Jubileumsantologi. / [ed] Ingemar Nordin, Linköping: Linköpings universitet , 2004, p. 123-144Chapter in book (Other academic)
  • 47.
    Marcusson, Jan
    et al.
    Linköping University, Department of Clinical and Experimental Medicine, Division of Neuro and Inflammation Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in Central Östergötland, Department of Acute Internal Medicine and Geriatrics.
    Nord, Magnus
    Linköping University, Department of Clinical and Experimental Medicine, Division of Neuro and Inflammation Science. Linköping University, Faculty of Medicine and Health Sciences.
    Johansson, Maria
    Linköping University, Department of Clinical and Experimental Medicine, Division of Neuro and Inflammation Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in Central Östergötland, Department of Acute Internal Medicine and Geriatrics.
    Alwin, Jenny
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Medicine and Health Sciences.
    Levin, Lars-Åke
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Medicine and Health Sciences.
    Dannapfel, Petra
    Linköping University, Department of Clinical and Experimental Medicine, Division of Neuro and Inflammation Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in Central Östergötland, Department of Acute Internal Medicine and Geriatrics.
    Thomas, Kristin
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Medicine and Health Sciences.
    Poksinska, Bozena
    Linköping University, Department of Management and Engineering, Logistics & Quality Management. Linköping University, Faculty of Science & Engineering.
    Sverker, Annette M.
    Linköping University, Faculty of Medicine and Health Sciences. Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Region Östergötland, Local Health Care Services in Central Östergötland, Department of Activity and Health.
    Olaison, Anna
    Linköping University, Department of Social and Welfare Studies, Social Work. Linköping University, Faculty of Arts and Sciences.
    Cedersund, Elisabet
    Linköping University, Department of Social and Welfare Studies, Division Ageing and Social Change. Linköping University, Faculty of Arts and Sciences.
    Kelfve, Susanne
    Linköping University, Department of Social and Welfare Studies, Division Ageing and Social Change. Linköping University, Faculty of Arts and Sciences.
    Motel-Klingebiel, Andreas
    Linköping University, Department of Social and Welfare Studies, Division Ageing and Social Change. Linköping University, Faculty of Arts and Sciences.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Kullberg, Agneta
    Linköping University, Department of Social and Welfare Studies, Social Work. Linköping University, Faculty of Arts and Sciences.
    Böttiger, Ylva
    Linköping University, Department of Medical and Health Sciences, Division of Drug Research. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center for Diagnostics, Department of Clinical Pharmacology.
    Dong, Huan-Ji
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center.
    Peolsson, Anneli
    Linköping University, Department of Medical and Health Sciences, Division of Physiotherapy. Linköping University, Faculty of Medicine and Health Sciences.
    Wass, Malin
    Linköping University, Department of Behavioural Sciences and Learning, Education, Teaching and Learning. Linköping University, Faculty of Arts and Sciences. Linköping University, The Swedish Institute for Disability Research.
    Lyth, Johan
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Operations management Region Östergötland, Research and Development Unit.
    Andersson, Agneta
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Operations management Region Östergötland, Research and Development Unit.
    Proactive healthcare for frail elderly persons: study protocol for a prospective controlled primary care intervention in Sweden2019In: BMJ Open, ISSN 2044-6055, E-ISSN 2044-6055, Vol. 9, no 5, article id e027847Article in journal (Refereed)
    Abstract [en]

    Introduction The provision of healthcare services is not dedicated to promoting maintenance of function and does not target frail older persons at high risk of the main causes of morbidity and mortality. The aim of this study is to evaluate the effects of a proactive medical and social intervention in comparison with conventional care on a group of persons aged 75 and older selected by statistical prediction.

    Methods and analysis In a pragmatic multicentre primary care setting (n=1600), a prediction model to find elderly (75+) persons at high risk of complex medical care or hospitalisation is used, followed by proactive medical and social care, in comparison with usual care. The study started in April 2017 with a run-in period until December 2017, followed by a 2-year continued intervention phase that will continue until the end of December 2019. The intervention includes several tools (multiprofessional team for rehabilitation, social support, medical care home visits and telephone support). Primary outcome measures are healthcare cost, number of hospital care episodes, hospital care days and mortality. Secondary outcome measures are number of outpatient visits, cost of social care and informal care, number of prescribed drugs, health-related quality of life, cost-effectiveness, sense of security, functional status and ability. We also study the care of elderly persons in a broader sense, by covering the perspectives of the patients, the professional staff and the management, and on a political level, by using semistructured interviews, qualitative methods and a questionnaire.

    Ethics and dissemination Approved by the regional ethical review board in Linköping (Dnr 2016/347-31). The results will be presented in scientific journals and scientific meetings during 2019–2022 and are planned to be used for the development of future care models.

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  • 48.
    Mazya, A. L.
    et al.
    Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Geriatric Medicine in Norrköping. Danderyd Hospital, Sweden .
    Eckerblad, Jeanette
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Jaarsma, Tiny
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Krevers, Barbro
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Advanced Home Care in Linköping. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care. Vrinnevi Hospital, Sweden .
    Unosson, Mitra
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Westöö, A.
    Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Geriatric Medicine in Norrköping.
    Ekdahl, Anne
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Geriatric Medicine in Norrköping.
    The Ambulatory Geriatric Assessment - a Frailty Intervention Trial (AGe-FIT) - A randomised controlled trial aimed to prevent hospital readmissions and functional deterioration in high risk older adults: A study protocol2013In: European Geriatric Medicine, ISSN 1878-7649, E-ISSN 1878-7657, Vol. 4, no 4, p. 242-247Article in journal (Refereed)
    Abstract [en]

    Background

    Care of old people with multimorbidity living at home is often fragmented with lack of coordination and information exchange between health care professionals, the elderly and their relatives. This paper describes the protocol of a randomised, controlled study, which aims to compare the efficacy of caring for older people with multimorbidity and three or more hospital admissions in the previous year at a geriatric ambulatory department based on Comprehensive Geriatric Assessment (CGA) versus usual care.

    Participants and methods

    A total of 400 community-dwelling old people with multimorbidity who are living in the city of Norrköping (Sweden) and one of their relatives are recruited for this trial and randomized to an intervention and a control group. Participants in the intervention group receive interdisciplinary care after a CGA at an Ambulatory Geriatric Unit with easy accessibility during working hours in addition to usual care. The control group receives usual care provided by the primary care or hospital.

    Outcomes

    The primary outcome is number of hospitalisation, the secondary outcomes are health-related outcomes including measures of frailty, cognition, symptom burden, feeling of security, quality of life of participants and relatives and as well as costs for health and social care. Participants will be followed for 2 years.

    Discussion

    This study will contribute to evidence of the effect of two different care models. The study has the potential to change care for older people with multimorbidity.

  • 49.
    Nilsson, Elin
    et al.
    Linköping University, Department of Social and Welfare Studies, Social Work. Linköping University, Faculty of Arts and Sciences.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences.
    Demens och identitet i relationer2016In: Att leva med demens / [ed] Ingrid Hellström, Lars-Christer Hydén, Malmö: Gleerups Utbildning AB, 2016, 1, p. 71-77Chapter in book (Other academic)
  • 50.
    Odzakovic, Elzana
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland. Ersta Sköndal Bräcke University College, Sweden.
    Ward, Richard
    Faculty of Social Science, University of Stirling, UK.
    Kullberg, Agneta
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Medicine and Health Sciences.
    'Overjoyed that I can go outside': Using walking interviews to learn about the lived experience and meaning of neighbourhood for people living with dementia.2018In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, article id 1471301218817453Article in journal (Refereed)
    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.

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