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  • 1.
    Bielsten, Therese
    et al.
    Jönköping University.
    Odzakovic, Elzana
    Jönköping University.
    Kullberg, Agneta
    Linköping University.
    Marcusson, Jan
    Linköping University.
    Hellström, Ingrid
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Controlling the Uncontrollable: Patient Safety and Medication Management From the Perspective of Registered Nurses in Municipal Home Health Care2022In: Global Qualitative Nursing Research, E-ISSN 2333-3936, Vol. 9, p. 1-11, article id 23333936221108700Article in journal (Refereed)
    Abstract [en]

    Most adverse events in health care are related to medication management and they are almost always preventable. Increased knowledge of patient safety related to medication management in home health care is an urgent issue to provide safe care for all patients regardless of where the health care takes place. This study explored patient safety within medication management in municipal home health care. Vignettes were used as stimulus during qualitative interviews with registered nurses. Three main themes with related subthemes were identified as challenges to patient safety within medication management in home health care: (1) challenges to information transfer, (2) challenges related to delegation, and (3) challenges of advanced medical treatments in the home. The issue of transfer of information permeated our findings. Coordinating medications, delegating tasks, along with more advanced care require clear communication between care providers to be compatible with patient safety within medication management in home health care.

  • 2.
    Bielsten, Therése
    et al.
    Linköpings universitet.
    Hellström, Ingrid
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Linköpings universitet.
    A review of couple-centred interventions in dementia: Exploring the what and why - Part A.2017In: 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.

  • 3.
    Bielsten, Therése
    et al.
    Linköpings universitet.
    Hellström, Ingrid
    Ersta Sköndal University College, Department of Health Care Sciences. Linköpings universitet.
    Den bortglömda kroppen2016In: Att leva med demens / [ed] Ingrid Hellström; Lars-Christer Hydén, Malmö: Gleerups Utbildning AB, 2016, p. 97-103Chapter in book (Other academic)
  • 4.
    Bielsten, Therése
    et al.
    Jönköping University.
    Hellström, Ingrid
    Marie Cederschiöld University, Department of Health Care Sciences.
    Lasrado, Reena
    The University of Manchester.
    Hann, Mark
    The University of Manchester.
    Davies, Linda
    The University of Manchester.
    Schumm, James
    The University of Manchester.
    Keady, John
    The University of Manchester.
    Doing Things Together in the Neighbourhood: Developing and testing the ‘DemPower’ app2023In: Reconsidering neighbourhoods and living with dementia: Spaces, Places, and People / [ed] John Keady, Open University Press, 2023, p. 183-203Chapter in book (Other academic)
  • 5.
    Carlander (Goliath), Ida
    et al.
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Sahlberg-Blom, Eva
    Örebro universitet.
    Hellström, Ingrid
    Linköpings universitet.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    The modified self: family caregivers' experiences of caring for a dying family member at home2011In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, 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 on 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 homecare 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: The present study argues for supporting family caregivers to maximize 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 the present study emphasizes 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 (Goliath), Ida
    et al.
    Karolinska Institutet.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Sahlberg-Blom, Eva
    Örebro universitet.
    Hellström, Ingrid
    Linköpings universitet.
    Sandberg, Jonas
    Ersta Sköndal University College, Department of Health Care Sciences.
    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 everyone in the family individually had to deal with the impending death, regardless of whether he or she was the person with the life-threatening illness or not. This was linked to ways of promoting the own self-image, of “me-ness.” This pattern was present at the same time as the pattern of “being us,” 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 (Goliath), Ida
    et al.
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Sahlberg-Blom, Eva
    Örebro universitet.
    Hellström, Ingrid
    Linköpings universitet.
    Sandberg, Jonas
    Ersta Sköndal University College, Department of Health Care Sciences.
    Four aspects of self-image close to death at home2011In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, Vol. 6, no 2, p. 5931-Article 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 twelve 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 (Goliath), Ida
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Sandberg, Jonas
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Hellström, Ingrid
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    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.
    Dwyer, Lise-Lotte
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Hellström, Ingrid
    Ett värdigt möte i vardagen2010In: Äldres hälsa och ohälsa: en introduktion till geriatrisk omvårdnad / [ed] Anna Ekwall, Lund: Studentlitteratur , 2010, 1, p. 29-40Chapter in book (Other academic)
  • 10.
    Ericsson, Iréne
    et al.
    Jönköping University.
    Ekdahl, Anne W.
    Lunds universitet.
    Hellström, Ingrid
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    "To be seen": older adults and their relatives' care experiences given by a geriatric mobile team (GerMoT)2021In: BMC Geriatrics, ISSN 1471-2318, E-ISSN 1471-2318, Vol. 21, no 1, article id 636Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The proportion of older people in the population has increased globally and has thus become a challenge in health and social care. There is good evidence that care based on comprehensive geriatric assessment (CGA) is superior to the usual care found in acute hospital settings; however, the evidence is scarcer in community-dwelling older people. This study is a secondary outcome of a randomized controlled trial of community-dwelling older people in which the intervention group (IG) received CGA-based care by a geriatric mobile geriatric team (GerMoT). The aim of this study is to obtain a better understanding, from the patients' perspective, the experience of being a part of the IG for both the participants and their relatives.

    METHODS: Qualitative semistructured interviews of twenty-two community dwelling participants and eleven of their relatives were conducted using content analysis for interpretation.

    RESULTS: The main finding expressed by the participants and their relatives was in the form of feelings related to safety and security and being recognized. The participants found the care easily accessible, and that contacts could be taken according to needs by health care professionals who knew them. This is in accordance with person-centred care as recommended by the World Health Organisation (WHO) for older people in need of integrated care. Other positive aspects were recurrent health examinations and being given the time needed when seeking health care. Not all participants were positive as some found the information about the intervention to be unclear especially regarding whom to contact when in different situations.

    CONCLUSIONS: CGA-based care of community-dwelling older people shows promising results as the participants in GerMoT found the care was giving a feeling of security and safety. They found the care easily accessible and that it was provided by health care professionals who knew them as a person and knew their health care problems. They found this to be in contrast to the usual care provided, but GerMoT care did not fulfill some people's expectations.

  • 11. Eriksson, Henrik
    et al.
    Sandberg, Jonas
    Ersta Sköndal University College, Palliative Research Centre, PRC. Jönköpings universitet.
    Hellström, Ingrid
    Experiences of long-term home care as an informal caregiver to a spouse: gendered meanings in everyday life for female carers.2013In: International journal of older people nursing, 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.
    Eriksson-Liebon, Magda
    et al.
    Vrinnevisjukhuset, Norrköping; Linköpings universitet.
    Roos, Susanne
    Linköpings universitet.
    Hellström, Ingrid
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Linköpings universitet.
    Patients' expectations and experiences of being involved in their own care in the emergency department: A qualitative interview study2021In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 30, no 13-14, p. 1942-1952Article in journal (Refereed)
    Abstract [en]

    AIMS AND OBJECTIVES: To investigate patients' experiences of being involved in their care in the emergency department (ED).

    BACKGROUND: Previous research shows that when patients experience involvement during care visits, this increased their trust in the care, gave a sense of control and promoted their autonomy.

    DESIGN: A qualitative descriptive design with semi-structured interviews, using the "Consolidated criteria for reporting qualitative research" (COREQ) checklist.

    METHODS: Using convenience sampling, semi-structured interviews were conducted with 16 patients in the ED.

    RESULTS: The study identified four categories: attention and inattention; communication and understanding; varying levels of participation; and inefficient and inaccessible care. The results show that patients expected to be treated with respect and to be involved in an open dialogue about their care. Patients' experiences of participation were related to their sense of control.

    CONCLUSIONS: Based on the results of the study, the authors found that factors such as dialogue, information, attention and participation affected the patients' involvement during the ED visit. Experiences of involvement and control were linked to patients' experiences of care and of patients as individuals.

    RELEVANCE TO CLINICAL PRACTICE: Healthcare providers' awareness of the importance of paying attention to the patient as an individual, and of the need for simple, continuous communication could facilitate patient involvement in own care.

  • 13.
    Hedman, Ragnhild
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences. Karolinska institutet.
    Hansebo, Görel
    Ersta Sköndal University College, Department of Health Care Sciences. Karolinska institutet.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet.
    Hellström, Ingrid
    Ersta Sköndal University College, Palliative Research Centre, PRC. Linköpings universitet.
    Norberg, Astrid
    Ersta Sköndal University College, Palliative Research Centre, PRC. Umeå universitet.
    Expressed Sense of Self by People With Alzheimer’s Disease in a Support Group Interpreted in Terms of Agency and Communion2016In: Journal of Applied Gerontology, ISSN 0733-4648, 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 Alzheimer’s 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 Harré’s 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.

  • 14.
    Hedman, Ragnhild
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Hansebo, Görel
    Ersta Sköndal University College, Department of Health Care Sciences.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Hellström, Ingrid
    Linköpings universitet.
    Norberg, Astrid
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    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.

  • 15.
    Hedman, Ragnhild
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences. Karolinska Institutet.
    Hellström, Ingrid
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Linköpings universitet.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet.
    Hansebo, Görel
    Ersta Sköndal University College, Department of Health Care Sciences. Karolinska institutet.
    Norberg, Astrid
    Ersta Sköndal University College, Palliative Research Centre, PRC. Umeå universitet.
    Sense of Self in Alzheimer’s 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 Alzheimer's 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.

  • 16.
    Hedman, Ragnhild
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC. Ersta Sköndal University College, Department of Health Care Sciences. Karolinska Institutet.
    Hellström, Ingrid
    Ersta Sköndal University College, Palliative Research Centre, PRC. Linköpings universitet.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska Institutet.
    Hansebo, Görel
    Ersta Sköndal University College, Department of Health Care Sciences. Karolinska Institutet.
    Norberg, Astrid
    Ersta Sköndal University College, Palliative Research Centre, PRC. Umeå universitet.
    Social positioning by people with Alzheimer's disease in a support group2014In: Journal of Aging Studies, ISSN 0890-4065, E-ISSN 1879-193X, Vol. 28, p. 11-21Article in journal (Refereed)
  • 17.
    Hedman, Ragnhild
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Norberg, Astrid
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Umeå universitet.
    Hellström, Ingrid
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Linköpings universitet.
    Agency and communion in people with Alzheimer's disease, as described by themselves and their spousal carers.2019In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 18, no 4, p. 1354-1372, article id 1471301217706268Article in journal (Refereed)
    Abstract [en]

    Agency (individuality) and communion (togetherness) are vital to a positive sense of self. People with Alzheimer's disease are at risk of experiencing diminished agency and decreased communion. Their family members', especially their partner's, 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 Alzheimer's 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 Alzheimer's disease from an individual perspective. The findings show that the carers generally described the agency of the person with Alzheimer's disease as slightly weaker compared with the persons with Alzheimer's disease themselves. The carers also appeared to have poor knowledge of what supported and threatened the sense of communion of the person with Alzheimer's disease.

  • 18.
    Hellström, Ingrid
    Ersta Sköndal University College, Department of palliative care research.
    Dignity and elderly spouses with dementia2009In: Dignity in care for older people / [ed] Lennart Nordenfelt, Chichester: Wiley-Blackwell , 2009, p. 99-116Chapter in book (Other academic)
  • 19.
    Hellström, Ingrid
    Linköpings universitet.
    Exploring 'couplehood' in dementia: A constructivist grounded theory study2005Doctoral 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’.

  • 20.
    Hellström, Ingrid
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Hur kan framtidens vård för äldre utvecklas?2020Other (Other academic)
    Abstract [sv]

    Fler och fler äldre bor hemma allt längre. Hur ska hemvården vara, förbättras och utvecklas för framtiden?

    Ingrid Hellström, professor i vårdvetenskap med inriktning vård av äldre, berättar om sin forskning.

  • 21.
    Hellström, Ingrid
    Marie Cederschiöld University, Department of Health Care Sciences.
    Older migrants and dementia2023In: Handbook on Migration and Ageing / [ed] Sandra Torres; Alistair Hunter, -- Välj ur listan --: Edward Elgar Publishing, 2023, p. 301-310Chapter in book (Other academic)
  • 22.
    Hellström, Ingrid
    Ersta Sköndal University College, Department of Health Care Sciences. Linköpings universitet.
    Vardag och samspel hemma eller på hemmet2016In: Att leva med demens / [ed] Hellström Ingrid & Hydén, Lars-Christer, Malmö: Gleerups Utbildning AB, 2016, p. 51-54Chapter in book (Other academic)
  • 23.
    Hellström, Ingrid
    Ersta Sköndal University College, Department of palliative care research.
    Värdighet och äldre makar med demens2010In: Värdighet i vården av äldre personer / [ed] Lennart Nordenfelt, Lund: Studentlitteratur , 2010, 1, p. 169-196Chapter in book (Other academic)
  • 24.
    Hellström, Ingrid
    et al.
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Carlander (Goliath), Ida
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Närstående i hemsjukvården2010In: Hemsjukvård / [ed] Eva Drevenhorn, Lund: Studentlitteratur , 2010, 1:1, p. 75-90Chapter in book (Other academic)
  • 25.
    Hellström, Ingrid
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences. Linköpings universitet.
    Hydén, Lars-ChristerLinköpings universitet.
    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.

  • 26.
    Hellström, Ingrid
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Linköpings universitet.
    Håkanson, Cecilia
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Eriksson, Henrik
    Röda korsets högskola.
    Sandberg, Jonas
    Jönköpings universitet.
    Development of older men's caregiving roles for wives with dementia.2017In: 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 men's 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 man's individual needs rather than making gendered assumptions about men and caring, the aim of the caregiver support for men might best target men's own meaning to the caring in their the everyday practices.

  • 27.
    Hellström, Ingrid
    et al.
    Ersta Sköndal University College, Department of palliative care research.
    Lundh, Ulla
    Livet med demenssjukdom på äldre dagar2007In: Hemmets vårdetik: om vård av äldre i livets slutskede / [ed] Gunilla Silfverberg, Lund: Studentlitteratur , 2007, 1, p. 91-107Chapter in book (Other academic)
  • 28.
    Hellström, Ingrid
    et al.
    Ersta Sköndal University College, Department of palliative care research.
    Nolan, M
    Time together2009In: Time for Dementia / [ed] Jane Gilliard and Mary Marshall, London: Hawker Publications , 2009Chapter in book (Other academic)
  • 29.
    Hellström, Ingrid
    et al.
    Linköpings universitet.
    Nolan, Mike
    University of Sheffield, United Kingdom.
    Lundh, Ulla
    Linköpings universitet.
    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.

  • 30.
    Hellström, Ingrid
    et al.
    Linköpings universitet.
    Nolan, Mike
    University of Sheffield, United Kingdom.
    Lundh, Ulla
    Linköpings universitet.
    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 orderto live positively when one partner has dementia. Data werecollected from 152 interviews with 20 couples conducted overa period of five years. Using a constructivist grounded theorymethodology, data were analysed to capture the main processesinvolved and charted how these changed over time. Three mainphases were identified termed: `sustaining couplehood'; `maintaininginvolvement'; and `moving on', that operated in an iterativerather than linear fashion. The data highlight the very activerole played by both partners, especially in the early stagesof the disease, as they strive to maintain the quality and closenessof their relationship by creating what we term a `nurturativerelational context'. The diverse strategies that the couplesadopt are presented, and the gradual way in which the personwith dementia `hands over' or `let's go' of responsibility totheir partner is described. The article provides several newinsights into the nature of spousal relationships in dementiaand the ways in which they seek to maximize their quality oflife, and, wherever possible, sustain couplehood.

  • 31.
    Hellström, Ingrid
    et al.
    Linköpings universitet.
    Nolan, Mike
    University of Sheffield, United Kingdom.
    Lundh, Ulla
    Linköpings universitet.
    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.

  • 32.
    Hellström, Ingrid
    et al.
    Linköpings universitet.
    Nolan, Mike
    University of Sheffield, Sheffield, United Kingdom.
    Nordenfelt, Lennart
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Lundh, Ulla
    Linköpings universitet.
    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 participantsin research, with ethical difficulties often being cited asthe reason for this. A wider inclusion of people with dementiain research raises several ethical and methodological challenges.This article adds to the emerging debate by reflecting on theethical and methodological issues raised during an interviewstudy involving people with dementia and their spouses. Thestudy sought to explore the impact of living with dementia.We argue that there is support for the inclusion of people withdementia in research and that the benefits of participationusually far outweigh the risks, particularly when a `safe context'has been created. The role of gatekeepers as potentially responsiblefor excluding people with dementia needs further consideration,with particular reference to the appropriateness of viewingconsent as a primarily cognitive, universalistic and exclusionaryevent as opposed to a more particularistic, inclusive and contextrelevant process.

  • 33.
    Holmberg, Bodil
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Hellström, Ingrid
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Linköpings universitet.
    Norberg, Astrid
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Umeå universitet.
    Österlind, Jane
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Assenting to exposedness: meanings of receiving assisted bodily care in a nursing home as narrated by older persons.2019In: 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 one's body into others' hands', 'To be between power and powerlessness', 'To oscillate between one's 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.

  • 34.
    Holmberg, Bodil
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Hellström, Ingrid
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Norberg, Astrid
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Österlind, Jane
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Assenting to exposedness: meanings of receiving assisted bodily care (RABC) in a nursing home as narrated by older persons2019Conference paper (Refereed)
    Abstract [en]

    Introduction: Most older people living in nursing homes need R-ABC (assistance while dressing, undressing, eating, maintaining personal hygiene and while being transferred). This conveys to be helped with things that most people prefer to do in private, turning the older person’s body into an area, accessible to others in ways that would be unacceptable in other contexts.

    Aim: The aim of the study was to elucidate meanings of receiving assisted bodily care, as narrated by older persons living in a nursing home.

    Method: The study used a lifeworld design, focusing upon how the older persons experienced their world. Narrative interviews with 12 older persons generated 28 interviews.The transcribed interviews were analyzed by use of a phenomenological hermeneutical method, inspired by the philosophy of Ricoeur.

    Results: The main theme ’Assenting to exposedness’ means to be exposed to others’ glances, touch and benevolence in an organisation that limits the conditions under which one lives. The overall meaning is to be exposed. Before that, one can do nothing but assent. The theme comprised five themes.

    To have hope in hopelessness

    Means to recognise remaining bodily assets and receive help to practice in order to increase self-determination, while simultaneously being aware that the life journey is nearing its end.

    To relinquish one’s body into others’ hands

    Means pleasure when experienced as soft, calm, warm, skilled and caring touch while talking about other things, which mutes the care needs. It means suffering when your wishes are neglected and the body is treated ’like a package’.

    To be between power and powerlessness

    Means to be able, to preserve self-determination by keeping trying to manage on one’s own. It means powerlessness when being without say, or feeling abandoned while waiting.

    To oscillate between one’s own responsibility and demands

    Means to judge situations and assent to circumstances predicted by others, but it also means uttering complaints about shortages in R-ABC, caused by organisational economic priorities.

    To be in an ongoing interaction

    Means having an equal and mutual fellowship with ANs, tinged by a joviality and closeness that normalises otherwise embarrassing situations. On the other hand, it means loneliness and alienation when R-ABC is percieved mechanical, not attending to personal wishes about the delivery of assisted bodily care.

    Conclusions: The meaning of R-ABC is to be exposed, but not passively. Rather, it means to be self-determinant for as long as possible, to perceive the body as lived and avoid objectification. Further, to take on responsibility for judging the ANs work-load before asking for help.

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  • 35.
    Holmberg, Bodil
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Hellström, Ingrid
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Linköpings universitet.
    Österlind, Jane
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Being a companion at a natural pathway towards death2017In: EAPC 2017 - 15th World Congress of the European Association for Palliative Care : Progressing Palliative Care: Abstracts, Newmarket: Hayward Medical Communications, 2017, p. 1091-1091, article id P02-436Conference paper (Refereed)
    Abstract [en]

    Background: Dying in old age tends to be slow and characterized by frailty and bodily needs. In Sweden a large proportion of deaths occur in nursing homes where bodily care is foremost provided by assistant nurses (ANs) who have high school education. Due to lack of places, admission to a nursing home is seldom granted until the older person has complex care needs, meeting death within a year.

    Aim: The aim of the study was to describe ANs experiences of providing bodily care to older persons during the last time of their lives in a nursing home.

    Method: The study had a qualitative design. Data was collected by individual interviews with ANs (n=7). The transcribed interviews were analyzed using an inductive qualitative content analysis.

    Results: In the analysis one main theme emerged; “Being a companion at a natural pathway towards death”. The ANs perceived dying at old age expected as a natural end to a long life. This meant not to hinder what happened, but to be pliable to bodily signs of gradual deterioration of the older person, using intuition, experience and teamwork. The bodily care strived to relieve oppressive symptoms and increase quality of life. This was made possible by teamwork with a holistic approach meaning that bodily care was not only to care for the body, but the whole person. Thus, ANs also described a wish to bring a sense of security and well-being to the older person by being present, creating an atmosphere of closeness outgoing from a companionship built upon a mutual and familiar relationship. 

    Conclusion: ANs strived to supply a bodily care aimed to strengthen the older persons self-image. This goal was closely linked to a person-centred palliative care that highlights self-image as fundamental to health, wellbeing and a good death. This may indicate a need of further education in palliative care in order to strengthen the ANs as professionals but also to develop an evidence-based bodily care.

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    Poster
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    Congress Programme
  • 36.
    Holmberg, Bodil
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Hellström, Ingrid
    Ersta Sköndal University College, Enheten för forskning i palliativ vård. Linköpings universitet.
    Österlind, Jane
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Being a spectator in ambiguity: Family members' perceptions of assisted bodily care in a nursing home2019In: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 15, no 1, p. 1-10Article 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 > 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 person's 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.

  • 37.
    Holmberg, Bodil
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Hellström, Ingrid
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Linköpings universitet.
    Österlind, Jane
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Elements of assisted bodily care: Ethical aspects2020In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 27, no 6, p. 1377-1395Article in journal (Refereed)
    Abstract [en]

    Background: Many frail older persons who die in Swedish nursing homes need assisted bodily care. They must surrender their bodies to the authority of assistant nurses, which may affect their autonomy, and dignity of identity. While assistant nurses claim to support older persons’ wishes, older persons claim having exposedness to assistant nurses’ routines. The provider-receiverin congruence revealed here warrants investigation.

    Aim: To describe the elements of assisted bodily care, as performed in a nursing home.

    Research design: Data were collected through thirty-nine observations of assisted bodily care, analyzed with qualitative content analysis.

    Participants and research context: Seventeen older persons and twenty-two assistant nurses from a Swedish nursing home.

    Ethical considerations: The research was conducted in line with the Declaration of Helsinki,further approved by the regional ethics committee.

    Findings: Findings show, that assisted bodily care consists of assistant nurses’ practical work, performed at a high tempo. Still, assistant nurses attempt to adapt this work to older persons’wishes for self-determination, taking into account their day-to-day state of health. In spite of time pressure and occasional interruptions, there is room for consideration and affection in assisted bodily care.

    Discussion: Assistant nurses try to promote older persons’ dignity of identity, but sometimes fail, possibly due to lack of time. On the contrary, they seem to know older persons well enough to adapt assisted bodily care according to their preferences and support self-determination. This indicates that openness to older persons’ life-worlds may be more important than the amount of time available.

    Conclusions: Nursing home contexts might benefit from adopting a person-centered palliative care perspective, highlighting the value of relationships and shared decision-making. If so, older persons and assisted nurses could prepare agreement on practices and goals in assisted bodily care beforehand. Such routines may be time-saving and beneficial to all.

  • 38.
    Holmberg, Bodil
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Hellström, Ingrid
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Linköpings universitet.
    Österlind, Jane
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    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 person's 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.

  • 39.
    Lasrado, Reena
    et al.
    The University of Manchester, United Kingdom.
    Bielsten, Therese
    Jönköping University.
    Hann, Mark
    The University of Manchester, United Kingdom.
    Schumm, James
    University of Bradford, United Kingdom.
    Reilly, Siobhan Theresa
    University of Bradford, United Kingdom.
    Davies, Linda
    The University of Manchester, United Kingdom.
    Swarbrick, Caroline
    University of Lancaster, United Kingdom.
    Dowlen, Robyn
    University of Leeds, United Kingdom.
    Keady, John
    The University of Manchester, United Kingdom.
    Hellström, Ingrid
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Developing a Management Guide (the DemPower App) for Couples Where One Partner Has Dementia: Nonrandomized Feasibility Study2021In: JMIR Aging, E-ISSN 2561-7605, Vol. 4, no 4, article id e16824Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Promoting the health and well-being of couples where one partner has dementia is an overlooked area of care practice. Most postdiagnostic services currently lack a couple-centered approach and have a limited focus on the couple relationship. To help address this situation, we developed a tablet-based self-management guide (DemPower) focused on helping couples enhance their well-being and relationship quality.

    OBJECTIVE: The aim of this study is to investigate the feasibility and acceptability of the DemPower app.

    METHODS: A nonrandomized feasibility design was used to evaluate the DemPower intervention over 3 months among couples where a partner had a diagnosis of dementia. The study recruited 25 couples in the United Kingdom and 19 couples in Sweden. Outcome measures were obtained at baseline and postintervention. The study process and interventions were evaluated at various stages.

    RESULTS: The study was completed by 48% (21/44) of couples where one partner had dementia, of whom 86% (18/21) of couples accessed all parts of the DemPower app. Each couple spent an average of 8 hours (SD 3.35 hours) using the app during the study period. In total, 90% (19/21) of couples reported that all sections of DemPower were useful in addressing various aspects of daily life and helped to focus on how they interacted in their relationship. Of the 4 core subjects on which the DemPower app was structured, home and neighborhood received the highest number of visits. Couples used activity sections more often than the core subject pages. The perception of DemPower's utility varied with each couple's lived experience of dementia, geographic location, relationship dynamics, and opportunities for social interaction. A 5.2-point increase in the dementia quality of life score for people with dementia and a marginal increase in the Mutuality scale (+1.23 points) for caregiver spouses were found. Design and navigational challenges were reported in the DemPower app.

    CONCLUSIONS: The findings suggest that the DemPower app is a useful resource for couples where one partner has dementia and that the implementation of the app requires the support of memory clinics to reach couples at early diagnosis.

    TRIAL REGISTRATION: ISRCTN Registry ISRCTN10122979; http://www.isrctn.com/ISRCTN10122979.

  • 40.
    Lasrado, Reena
    et al.
    The University of Manchester, United Kingdom.
    Bielsten, Therése
    Linköpings universitet.
    Hann, Mark
    The University of Manchester, United Kingdom.
    Davies, Linda
    The University of Manchester, United Kingdom.
    Schumm, James
    The University of Manchester, United Kingdom.
    Reilly, Siobhan
    Lancaster University, United Kingdom.
    Swarbrick, Caroline
    The University of Manchester, United Kingdom.
    Keady, John
    The University of Manchester, United Kingdom.
    Hellström, Ingrid
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Linköpings universitet.
    Designing and Implementing a Home-Based Couple Management Guide for Couples Where One Partner has Dementia (DemPower): Protocol for a Nonrandomized Feasibility Trial.2018In: JMIR Research Protocols, E-ISSN 1929-0748, Vol. 7, no 8, article id e171Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: 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.

    OBJECTIVE: This study aims to investigate the feasibility and acceptability of DemPower and to assess the criteria for a full-integrated clinical and economic randomized control trial. DemPower couple management app will be introduced to couples wherein one partner has dementia.

    METHODS: The study will recruit 25 couples in the United Kingdom and 25 couples in Sweden. Couples will be given 3 months to engage with the app, and the amount of time taken to complete the guide (can be <3 or >3 months) will be reviewed. A set of outcome measures will be obtained at baseline and postintervention stages.

    RESULTS: The proposed study is at the recruitment phase. The DemPower app is being introduced to couples from consultation groups at a pretrial phase for identifying any bugs and exploring if any navigation challenges exist. The feasibility testing will begin in April 2018.

    CONCLUSIONS: The study will determine how much support couples need to engage with DemPower and whether or not they make use of it in their everyday lives. If there is support for app use, a future study will assess whether it is superior to "usual care."

    TRIAL REGISTRATION: International Standard Randomized Controlled Trial Number (ISRCTN): 10122979; http://www.isrctn.com/ISRCTN10122979 (Archived by WebCite at http://www.webcitation.org/70rB1iWYI).

    REGISTERED REPORT IDENTIFIER: RR1-10.2196/9087.

  • 41.
    Lundgren, Johan
    et al.
    Linköpings universitet.
    Norell-Clarke, Annika
    Karlstads universitet; Högskolan Kristianstad.
    Hellström, Ingrid
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Linköpings universitet.
    Angelhoff, Charlotte
    Linköpings universitet.
    Adolescents' Experiences of Staying Overnight at Family-Centered Pediatric Wards2020In: Sage Open Nursing, E-ISSN 2377-9608, Vol. 6, p. 1-10Article 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.

  • 42. Lundh, Ulla
    et al.
    Hellström, Ingrid
    Ersta Sköndal University College, Department of palliative care research.
    Berättelsen om Elna och Harald2007In: Hemmets vårdetik: om vård av äldre i livets slutskede / [ed] Gunilla Silfverberg, Lund: Studentlitteratur , 2007, 1, p. 109-117Chapter in book (Other academic)
  • 43.
    Nilsson, Elin
    et al.
    Linköpings universitet.
    Hellström, Ingrid
    Ersta Sköndal University College, Department of Health Care Sciences. Linköpings universitet.
    Demens och identitet i relationer2016In: Att leva med demens / [ed] Ingrid Hellström; Lars-Christer Hydén, Malmö: Gleerups Utbildning AB, 2016, p. 71-77Chapter in book (Other academic)
  • 44.
    Odzakovic, Elzana
    et al.
    Linköpings universitet.
    Hellström, Ingrid
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Linköpings universitet.
    Ward, Richard
    University of Stirling, United Kingdom.
    Kullberg, Agneta
    Linköpings universitet.
    'Overjoyed that I can go outside': Using walking interviews to learn about the lived experience and meaning of neighbourhood for people living with dementia2020In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 19, no 7, p. 2199-2219Article 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.

  • 45.
    Söderlund, Mona
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences.
    Hellström, Ingrid
    Marie Cederschiöld University, Department of Health Care Sciences.
    Vamstad, Johan
    Marie Cederschiöld University, Centre for Civil Society Research.
    Hedman, Ragnhild
    Marie Cederschiöld University, Department of Health Care Sciences. Sophiahemmet högskola.
    Peer support for the newly diagnosed: how people with dementia can co-produce meeting centre services2022In: Ageing & Society, ISSN 0144-686X, E-ISSN 1469-1779, p. 1-20Article in journal (Refereed)
    Abstract [en]

    This paper aims to contribute to the knowledge about open, co-produced meeting centres for people with dementia, from their own perspective. Services that support people who are newly diagnosed with dementia are often insufficient. Co-produced services have the potential to address the need of people with dementia to be useful and productive, while reducing the stigma. In this study, we applied a qualitative design. Data were collected at a meeting centre for people with newly diagnosed dementia, and consisted of fieldwork (13 days for about two hours at a time), written materials, and semi-structured interviews (mean length 30 minutes) with five attendees with dementia and two staff persons. The analysis was inspired by situational analysis. The findings showed that the meeting centre provided a place for human encounters, a break from everyday life, and a place to share knowledge and develop new skills. Further, challenges were described. Co-production consisted of the attendees being encouraged to take part in the planning of activities, learning from each other and providing mutual support. The study adds to previous knowledge about co-produced services for people with dementia. Future studies can clarify how co-production can be developed in services for people with newly diagnosed dementia in countries and regions where there is a dearth of this kind of support.

  • 46.
    Österlind, Jane
    et al.
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Hansebo, Görel
    Ersta Sköndal University College, Department of Health Care Sciences.
    Andersson, Janicke
    Linköpings universitet.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Enheten för forskning i palliativ vård. Ersta Sköndal University College, Department of Health Care Sciences.
    Hellström, Ingrid
    Linköpings universitet.
    A discourse of silence: professional carers resoning of death and dying in nursing homes2011In: Ageing & Society, ISSN 0144-686X, E-ISSN 1469-1779, Vol. 31, no 4, p. 529-544Article in journal (Other academic)
    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 adiscourse that guides the staff in their work. The aim of this studywas to explore thediscourse of death and dying in nursing homes from the perspective and understandingof the staff. The study draws on Foucault’s discourse analysis. Data arefrom fivefocus-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 person’s death. The structure of the discourse was characterised by a movement between twopositions, avoiding and confronting death, themain focus being on avoidance. Thearticulation and practices of silence highlight a need to regard dying as a processthat requires attention. One way to ensure appropriate attention could be to instil the philosophy of palliative care in nursing homes, including training and supportfor the staff in their work. The study demonstrates that nursing-home staff needmore knowledge and support to enable them to feel that they do a good job.

  • 47.
    Österlind, Jane
    et al.
    Ersta Sköndal University College, Department of palliative care research. Ersta Sköndal University College, Department of Health Care Sciences.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Enheten för forskning i palliativ vård. Karolinska institutet.
    Hansebo, Görel
    Ersta Sköndal University College, Department of Health Care Sciences. Karolinska institutet.
    Hellström, Ingrid
    Ersta Sköndal University College, Department of palliative care research. Ersta Sköndal University College, Department of Health Care Sciences. Linköpings universitet.
    Feeling lonely in an unfamiliar place: Older people's 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, p. 1-8, article id e12129Article in journal (Refereed)
    Abstract [en]

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

    Background: A move to and a life in a nursing home while being close to death is a reality for many older people in Sweden. Being able to express thoughts and feelings about death has been described as both crucial for sustaining personhood as well as for establishing a meaningful existence at the end of life. Important are the experiences of older people living in nursing homes who are approaching death.

    Method: Six older people were interviewed on one to four occasions. A total of 16 interviews were conducted with the participants. An interpretative approach was chosen.

    Findings: The main interpretation, Feeling lonely in an unfamiliar place, is based on three themes (i) Waiting for death, with the subthemes death as a release and thinking of oneself as dead; (ii) Subordinate oneself to values and norms of the staff, with the subthemes feeling offended and feeling trapped; and (iii) Keep the courage up. The older people's lives were characterised by feelings of aloneness in an unfamiliar place which contributed to a sense of existential loneliness. They experienced few opportunities to discuss their thoughts of life and death, including preparations for passing away.

    Conclusion and implication for practice: It is of importance for professionals to be able to meet older people as they are and respect them as human beings in their transitions, before, during and after the move to a nursing home. It is important to find ways to support older people's wellbeing and identity near death.

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