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  • 1.
    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)
  • 2.
    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.

  • 3.
    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.

  • 4.
    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.

  • 5.
    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.

  • 6.
    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)
  • 7.
    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.

  • 8.
    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.

  • 9.
    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.

  • 10.
    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.

  • 11.
    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.

  • 12.
    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.

  • 13.
    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.

  • 14.
    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.

  • 15.
    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.

  • 16.
    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)
  • 17.
    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
  • 18.
    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)
  • 19.
    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.

  • 20.
    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.

  • 21.
    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.

  • 22.
    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.

  • 23.
    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.

  • 24.
    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.))
  • 25.
    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.

  • 26.
    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.

  • 27.
    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.

  • 28.
    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.

  • 29.
    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.

  • 30.
    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.

  • 31.
    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)
  • 32.
    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.

  • 33.
    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)
  • 34.
    Osterlind, Jane
    et al.
    Ersta Skondal University College.
    Hansebo, Gorel
    Ersta Skondal University College.
    Andersson, Janicke
    Linköping University, Department of Social and Welfare Studies, Society, Diversity, Identity . Linköping University, Faculty of Arts and Sciences.
    Ternestedt, Britt-Marie
    Ersta Skondal University College.
    Hellström, Ingrid
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies, Health, Activity, Care.
    A discourse of silence: professional carers reasoning about death and dying in nursing homes2011In: AGEING and SOCIETY, ISSN 0144-686X, Vol. 31, p. 529-544Article in journal (Refereed)
    Abstract [en]

    Nursing homes are a setting in which death and dying is common. How death and dying is articulated and the actions that take place in a nursing home constitute a discourse that guides the staff in their work. The aim of this study was to explore the discourse of death and dying in nursing homes from the perspective and understanding of the staff. The study draws on Foucaults discourse analysis. Data are from five focus-group discussions held with 28 staff of four different nursing homes in Sweden. The findings show that the discourse had three characteristics : (a) dying was silent and silenced, (b) emotions were pushed into the background, and (c) attentiveness to death arose after the moment of the elderly persons death. The structure of the discourse was characterised by a movement between two positions, avoiding and confronting death, the main focus being on avoidance. The articulation and practices of silence highlight a need to regard dying as a process that requires attention. One way to ensure appropriate attention could be to instil the philosophy of palliative care in nursing homes, including training and support for the staff in their work. The study demonstrates that nursing-home staff need more knowledge and support to enable them to feel that they do a good job.

  • 35.
    Roos, Susanne
    et al.
    Linköping University, Department of Social and Welfare Studies, Health, Activity, Care. Linköping University, Faculty of Health Sciences.
    Hellström, Ingrid
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies, Health, Activity, Care.
    Hallert, Claes
    Linköping University, Department of Social and Welfare Studies, Health, Activity, Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in the East of Östergötland, Department of Internal Medicine VHN.
    Wilhelmsson, Susan
    Linköping University, Department of Medical and Health Sciences. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in the West of Östergötland, Unit of Research and Development in Local Health Care, County of Östergötland.
    The Worried well: Women living with Coeliac disease in SwedenManuscript (preprint) (Other academic)
    Abstract [en]

    Aims and objectives: To explore how women with coeliac disease (CD) experience everyday life and their outlook on their future.

    Background: Women who are diagnosed with CD and who are recommended to eat a gluten-free diet for life is likely to undergo a transition. It is therefore important that health professionals have insight into what it is like to live with a chronic illness and the factors that affect the lives of women who have CD.

    Design: A qualitative approach with interviews was used. The inclusion criteria were: woman aged 20 years or more, CD diagnosed at least 2 years prior to inclusion, following a gluten-free diet and speaking Swedish fluently.

    Method: A conventional content analysis was used for the subjective interpretation of the data content.

    Results: Three main themes emerged in the analysis: illness trajectory and treatment, socializing with others and feelings of loneliness and worries. The findings indicate that living with CD affects the person’s entire life from the past, in the present, and into the future, especially when daily routines must be altered.

    Conclusions: The women expressed a sense of loneliness and invisibility and are constantly worried about their health, which extended to the management of their diet when socializing with others. The diet is viewed as a friend, an enemy, an obstacle and an opportunity to enjoy a good life.

    Relevance to clinical practice: Supporting women diagnosed with CD as adults during successful adaptation to their chronic illness appears to be a major task for health care professionals. Health care needs to address these women’s symptoms, worries and sense of invisibility.

  • 36.
    Roos, Susanne
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Ingrid, Hellström
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Hallert, Claes
    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 Internal Medicine in Norrköping.
    Susan, Wilhelmsson
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in West Östergötland, Research & Development Unit in Local Health Care.
    Everyday life for women with celiac disease2013In: Gastroenterology Nursing, ISSN 1042-895X, E-ISSN 1538-9766, Vol. 36, no 4, p. 266-273Article in journal (Refereed)
    Abstract [en]

    The aim of this research was to explore how women with celiac disease experience everyday life. It is important that healthcare professionals understand what it is like to live with a chronic illness, and also the factors that affect the lives of women who have celiac disease. The study has a qualitative approach and the data were collected using interviews with 16 women. A conventional content analysis was used for the subjective interpretation of the qualitative interviews. Three main themes emerged in the analysis: illness trajectory and treatment, socializing with others, and feelings of loneliness and worry. The findings indicate that living with celiac disease affects the person's entire life from the past, in the present, and into the future, especially when daily routines must be altered. The women expressed a sense of loneliness and invisibility, especially when socializing with others. The diet could be a friend, enemy, obstacle, or opportunity in terms of enjoying a good life. Supporting women diagnosed with celiac disease appears to be a major task for healthcare professionals. Such professionals need to pay attention to women's symptoms, worries, and their feeling of being invisible.

  • 37.
    Torres, Sandra
    et al.
    Linköping University, Department of Social and Welfare Studies, NISAL - National Institute for the Study of Ageing and Later Life.
    Hellström, Ingrid
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies, Health, Activity, Care.
    The social construction of dementia: perspectives from elderly people with dementia and their formal and informal caregiversConference paper (Refereed)
    Abstract [en]

    n/a

  • 38.
    Wallin, A.K.
    et al.
    Wallin, Å.K., Clinical Memory Research Unit, Department of Clinical Sciences, Malmö, Lund University, Malmö, Sweden, Department of Clinical Sciences, Malmö, Lund University, Malmö University Hospital, SE-205 02 Malmö, Sweden.
    Andreasen, N.
    Karolinska Institutet, Department of Neurotec, Karolinska University Hospital, Huddinge, Stockholm, Sweden.
    Eriksson, S.
    Section of Geriatric Medicine, Department of Community Medicine and Rehabilitation, Umeå University, Umeå, Sweden, Department of Community Medicine and Rehabilitation, Umeå University, Umeå, Sweden.
    Batsman, S.
    Båtsman, S., Department of Primary Care, Kalix Vårdcentral, Kalix, Sweden.
    Nasman, B.
    Näsman, B., Section of Geriatric Medicine, Department of Community Medicine and Rehabilitation, Umeå University, Umeå, Sweden, Department of Community Medicine and Rehabilitation, Umeå University, Umeå, Sweden.
    Ekdahl, Anne
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Neuroscience and Locomotion. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Geriatric Medicine.
    Kilander, L.
    Department of Public Health and Caring Sciences/Geriatrics, Uppsala University, Uppsala, Sweden.
    Grut, M.
    Department of Geriatric Medicine, Cognitive Section, Danderyd Hospital, Danderyd, Sweden.
    Ryden, M.
    Rydén, M., Department of Geriatric Medicine, Cognitive Section, Danderyd Hospital, Danderyd, Sweden.
    Wallin, A.
    Institute of Neuroscience, Section of Psychiatry, Göteborg/Sahlgrenska University Hospital, Mölndal, Sweden, Institute of Clinical Neuroscience, Göteborg University, Göteborg, Sweden.
    Jonsson, M.
    Institute of Neuroscience, Section of Psychiatry, Göteborg/Sahlgrenska University Hospital, Mölndal, Sweden, Institute of Clinical Neuroscience, Göteborg University, Göteborg, Sweden.
    Olofsson, H.
    Memory Clinic, Uddevalla Hospital, Uddevalla, Sweden.
    Londos, E.
    Clinical Memory Research Unit, Department of Clinical Sciences, Malmö, Lund University, Malmö, Sweden.
    Wattmo, C.
    Clinical Memory Research Unit, Department of Clinical Sciences, Malmö, Lund University, Malmö, Sweden.
    Eriksdotter, Jonhagen M.
    Eriksdotter Jönhagen, M., Karolinska Institutet, Department of Neurotec, Karolinska University Hospital, Huddinge, Stockholm, Sweden.
    Minthon, L.
    Clinical Memory Research Unit, Department of Clinical Sciences, Malmö, Lund University, Malmö, Sweden.
    Bjorkman, A.
    Björkman, A., Clinical Memory Research Unit, Department of Clinical Sciences, Malmö, Lund University, Malmö, Sweden.
    Wunsch, A.
    Department of Primary Care, Kalix Vårdcentral, Kalix, Sweden.
    Mannberg, L.
    Department of Community Medicine and Rehabilitation, Umeå University, Umeå, Sweden.
    Kallman, A.
    Källman, A., Department of Geriatric Medicine, University Hospital Linköping, Linköping, Sweden.
    Hellström, Ingrid
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies, Health, Activity, Care.
    Soderin, M.
    Söderin, M., Department of Public Health and Caring Sciences/Geriatrics, Uppsala University, Uppsala, Sweden.
    Sjodin, C.
    Sjödin, C., Karolinska Institutet, Department of Neurotec, Karolinska University Hospital, Huddinge, Stockholm, Sweden.
    Grut, M.
    Department of Geriatric Medicine, Cognitive Section, Danderyd Hospital, Danderyd, Sweden.
    Mohlin, E.
    Department of Geriatric Medicine, Cognitive Section, Danderyd Hospital, Danderyd, Sweden.
    Dahl, C.
    Clinical Memory Research Unit, Department of Clinical Sciences, Malmö, Lund University, Malmö, Sweden.
    Gustavsson, K.
    Institute of Clinical Neuroscience, Göteborg University, Göteborg, Sweden.
    Holm, B.
    Memory Clinic, Uddevalla Hospital, Uddevalla, Sweden.
    Donepezil in Alzheimer's disease: What to expect after 3 years of treatment in a routine clinical setting2007In: Dementia and Geriatric Cognitive Disorders, ISSN 1420-8008, E-ISSN 1421-9824, Vol. 23, no 3, p. 150-160Article in journal (Refereed)
    Abstract [en]

    Background/Aims: Clinical short-term trails have shown positive effects of donepezil treatment in patients with Alzheimer's disease. The outcome of continuous long-term treatment in the routine clinical settings remains to be investigated. Methods: The Swedish Alzheimer Treatment Study (SATS) is a descriptive, prospective, longitudinal, multicentre study. Four hundred and thirty-five outpatients with the clinical diagnosis of Alzheimer's disease, received treatment with donepezil. Patients were assessed with Mini-Mental State Examination (MMSE), Alzheimer's Disease Assessment Scale-cognitive subscale (ADAS-cog), global rating (CIBIC) and Instrumental Activities of Daily Living (IADL) at baseline and every 6 months for a total period of 3 years. Results: The mean MMSE change from baseline was positive for more than 6 months and in subgroups of patients for 12 months. After 3 years of treatment the mean change from baseline in MMSE-score was 3.8 points (95% CI, 3.0-4.7) and the ADAS-cog rise was 8.2 points (95% CI, 6.4-10.1). This is better than expected in untreated historical cohorts, and better than the ADAS-cog rise calculated by the Stern equation (15.6 points, 95% CI, 14.5-16.6). After 3 years with 38% of the patients remaining, 30% of the them were unchanged or improved in the global assessment. Conclusion: Three-year donepezil treatment showed a positive global and cognitive outcome in the routine clinical setting. Copyright © 2007 S. Karger AG.

  • 39.
    Wissendorff Ekdahl, Anne
    et al.
    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.
    Hellström, Ingrid
    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.
    Andersson, Lars
    Linköping University, Department of Social and Welfare Studies, NISAL - National Institute for the Study of Ageing and Later Life. Linköping University, Faculty of Arts and Sciences.
    Friedrichsen, Maria
    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, Center of Palliative Care.
    Too complex and time-consuming to fit in! Physicians' experiences of elderly patients and their participation in medical decision making: a grounded theory study2012In: BMJ Open, ISSN 2044-6055, E-ISSN 2044-6055, Vol. 2, no 3Article in journal (Refereed)
    Abstract [en]

    Objective To explore physicians' thoughts and considerations of participation in medical decision making by hospitalised elderly patients.

    Design A qualitative study using focus group interviews with physicians interpreted with grounded theory and completed with a questionnaire.

    Setting and participants The setting was three different hospitals in two counties in Sweden. Five focus groups were conducted with physicians (n=30) in medical departments, with experience of care of elderly patients.

    Results Physicians expressed frustration at not being able to give good care to elderly patients with multimorbidity, including letting them participate in medical decision making. Two main categories were found: ‘being challenged’ by this patient group and  ‘being a small part of the healthcare production machine’. Both categories were explained by the core category ‘lacking in time’. The reasons for the feeling of ‘being challenged’ were explained by the subcategories ‘having a feeling of incompetence’, ‘having to take relatives into consideration’ and ‘having to take cognitive decline into account’. The reasons for the feeling of ‘being a small part of the healthcare production machine’ were explained by the subcategories ‘at the mercy of routines' and ‘inadequate remuneration system’, both of which do not favour elderly patients with multimorbidity.

    Conclusions Physicians find that elderly patients with multimorbidity lead to frustration by giving them a feeling of professional inadequacy, as they are unable to prioritise this common and rapidly growing patient group and enable them to participate in medical decision making. The reason for this feeling is explained by lack of time, competence, holistic view, appropriate routines and proper remuneration systems for treating these patients.

  • 40.
    Wissendorff Ekdahl, Anne
    et al.
    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.
    Linderholm, Märit
    Valdemarsviks Primary Care Center, 615 30 Valdemarsvik, County Council of Eastern Gotland, Sweden.
    Hellström, Ingrid
    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.
    Andersson, Lars
    Linköping University, Department of Social and Welfare Studies, NISAL - National Institute for the Study of Ageing and Later Life. Linköping University, Faculty of Arts and Sciences.
    Friedrichsen, Maria
    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, Center of Palliative Care.
    ‘Are decisions about dischargeof elderly hospital patients mainlyabout freeing blocked beds?’: A qualitative observational study2012In: BMJ. British Medical Journal, E-ISSN 1756-1833, Vol. 2, no 6, p. 1-9Article in journal (Refereed)
    Abstract [en]

    Objective: To explore the interactions concerning thefrail and elderly patients having to do with dischargefrom acute hospital wards and their participation inmedical decision-making. The views of the patients andthe medical staff were both investigated.

    Design: A qualitative observational and interviewstudy using the grounded theory.

    Setting and participants: The setting was threehospitals in rural and urban areas of two counties inSweden of which one was a teaching hospital. The datacomprised observations, healthcare staff interviews andpatient interviews. The selected patients were all aboutto be informed that they were going to be discharged.

    Results: The patients were seldom invited toparticipate in the decision-making regarding discharge.Generally, most communications regarding dischargewere between the doctor and the nurse, after which thepatient was simply informed about the decision. It wasobserved that the discharge information was oftengiven in an indirect way as if other, albeit absent,people were responsible for the decision. Interviewswith the healthcare staff revealed their preoccupationwith the need to free up beds: ‘thinking aboutdischarge planning all the time’ was the core category.This focus not only failed to fulfil the complex needs ofelderly patients, it also generated feelings of frustrationand guilt in the staff, and made the patients feelunwelcome.

    Conclusions: Frail elderly patients often did notparticipate in the medical decision-making regardingtheir discharge from hospital. The staff was highlyfocused on patients getting rapidly discharged, whichmade it difficult to fulfil the complex needs of thesepatients.

  • 41.
    Österlind, Jane
    et al.
    Palliative Research Center, Ersta Sköndal University College, Stockholm, Sweden; Department of Health Care Sciences, Ersta Sköndal University College, Stockholm, Sweden.
    Ternestedt, Britt-Marie
    Palliative Research Center, Ersta Sköndal University College, Stockholm, Sweden; Department of Health Care Sciences, Ersta Sköndal University College, Stockholm, Sweden; Department of Neurobiology, Care Sciences and Society, Karolinska Institute, Stockholm, Sweden.
    Hansebo, Görel
    Department of Health Care Sciences, Ersta Sköndal University College, Stockholm, Sweden; Department of Neurobiology, Care Sciences and Society, Karolinska Institute, Stockholm, Sweden.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Feeling lonely in an unfamiliar place: older peoples experiences of life close to death in a nursing home2017In: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 12, no 1, article id e12129Article in journal (Refereed)
    Abstract [en]

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

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