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  • 1. Boroujeni, Ali Zargham
    et al.
    Mohammadi, Rakhshandeh
    Oskouie, Sayede Fatemeh Haghdoost
    Sandberg, Jonas
    Ersta Sköndal University College, Department of Health Care Sciences.
    Iranian nurses' preparation for loss: finding a balance in end-of-life care.2009In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 18, no 16, p. 2329-36Article in journal (Refereed)
    Abstract [en]

    AIM: To explore the nurse-patient interaction in terminally ill situations in acute care, focusing on the nurses' preparation for loss. BACKGROUND: Caring for dying patients can be a distressing and sometimes even threatening experience for nurses. Despite the vast body of literature on nurse/patient interaction and the quality of end-of-life care, few studies focus specifically on nurses' experience. DESIGN: A grounded theory approach was used to explore nurses' interaction with dying patients and their families and examine how nurses deal with situations in which the patient's death is inevitable. METHOD: Eighteen nurses were interviewed up to three times each at three teaching hospitals in Isfahan, Iran, during autumn 2006. A shortlist of possible participants was obtained by means of theoretical sampling and those who had experienced the death of patients and were able to express their feelings verbally were selected. RESULTS: The results clarified a core consideration: striking a balance between restorative and palliative care, information and hope, expectations and abilities and intimacy and distance. CONCLUSION: Attaining a balance in caring for dying patients is a major challenge to nurses: it concerns not only their interactions with patients and their families, but also their perceptions of themselves and their actions in end-of-life care. RELEVANCE TO CLINICAL PRACTICE: In end-of-life care, it is important for nurses to be able to change the focus of their care when the patient's condition is diagnosed as irreversible. They also need to be well equipped to maintain a balance, thereby preparing themselves for the patient's forthcoming death.

  • 2.
    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
    Hälsoakademin, 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.

  • 3.
    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
    Hälsoakademin, 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. 

  • 4.
    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.

  • 5. Eriksson, Henrik
    et al.
    Sandberg, Jonas
    Ersta Sköndal University College, Department of Health Care Sciences.
    Röster från Sidlinjen: former och normer i anhörigspelet2010In: Genusperspektiv på vård och omvårdnad / [ed] Helén Strömberg, Henrik Eriksson, Lund: Studentlitteratur, 2010, 2. utök. uppl., p. 151-168Chapter in book (Other academic)
  • 6. Eriksson, Henrik
    et al.
    Sandberg, Jonas
    Ersta Sköndal University College, Department of Health Care Sciences.
    Transitions in men's caring identities: experiences from home-based care to nursing home placement.2008In: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 3, no 2, p. 131-7Article in journal (Refereed)
    Abstract [en]

    Objectives.  The aim of this study is to describe, from a gender identity perspective, the experiences of older men involved in the process of caring for a partner at home and the placement into a nursing home. Background.  Few studies have paid attention to the importance of gender when considering the social experiences of older men providing care for an ill spouse and finally placing a partner in a nursing home. Further understanding is much needed of how older men experience the process of caring for a spouse from a gender identity perspective. Design.  A qualitative constructivist approach was adopted for this study. Participants.  Data consists of interviews with seven men that have been informal carers and experienced the placement of their wife in a nursing home. Methods.  Interviews were analysed with a constructivist approach. Results.  The results indicate that men go through two transitions in their gender identity during the caregiving process and placement. From the mutual loving relationship of being a loving husband, the social responsibility of daily care of their wives changes the situation into that of being a caring husband, and finally with the move to a nursing home there is a transition from intimate care to a relationship based on friendship. Conclusions.  The results show that older caregiving men undergo a process involving a reconstruction of gender identity. To formally recognize men's caring activities and to make them sustainable, we believe that men in an informal caring relationship need support. Relevance to clinical practice.  Nurses need to recognize the identity struggles resulting in sadness and suffering that are related to changes in men's lives during the caregiving process. Understanding the dynamics and changes that occur when men take on a caring task is important for the development of their role as carers.

  • 7. 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.

  • 8. Eriksson, Henrik
    et al.
    Sandberg, Jonas
    Ersta Sköndal University College, Palliative Reserch Centre, PRC.
    Holmgren, Jessica
    Pringle, Keith
    His helping hands-adult daughter's perceptions' of fathers with caregiving responsibility2013In: European Journal of Social Work, ISSN 1369-1457, E-ISSN 1468-2664, Vol. 16, no 2, p. 235-248Article in journal (Refereed)
    Abstract [en]

    Women's position as informal carers has been taken for granted in social policy and social professions, while relatively few discussions have elaborated on caring as a later life activity for men and the impact on family care. This study explores the processes connected to informal caregiving in later life through the position of adult daughters of older fathers engaged with long-term caregiving responsibilities for a partner. A sample of eight daughters, with fathers having primary caregiving responsibility for their ill partners was recruited and in-depth interviews were carried out and analysed according to qualitative procedures. The daughters' descriptions of their relationships with their fathers show that being an older man who engages in caring can have a positive outcome on relations. Even if some of the daughters have doubts about their fathers “masculine authenticity”, all of them appear to cherish “his helping hands” as a carer and closer more intimate relationships with their fathers. Caring for an old and frail spouse may potentially present alternative ways of being a man beyond traditional ‘male activities’ and that caring might also sometimes involve a re-construction of gender identities. It is suggested that social work professionals may use a gendered understanding to assess and work strategically with daughters and other family members who support caring fathers.

  • 9. Häggström-Nordin, Elisabet
    et al.
    Sandberg, Jonas
    Mälardalens högskola.
    Hanson, Ulf
    Tydén, Tanja
    'It's everywhere!' young Swedish people's thoughts and reflections about pornography.2006In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 20, no 4, p. 386-93Article in journal (Refereed)
    Abstract [en]

    Pornography is one of the most sought-after topics on the Internet, and is easily available for anyone, including children and adolescents. At youth centres, nurse-midwives have noticed that young people have different kinds of questions about sexual practices compared with a few years ago. The aim of this study was to gain an understanding of thoughts and reflections about pornography consumption, and its possible influence on sexual practices, among young women and men. The staff at a youth centre in a city in central Sweden asked the visitors if they had seen pornography and if they wanted to be interviewed about their experiences. Ten young women and eight men, aged 16-23 years, participated. In-depth interviews were performed and open-ended questions about pornography and sexuality were posed. The interviews were tape-recorded and transcribed verbatim. Data were analysed according to grounded theory. The core category 'Living with the current sexual norm' depicted how pornography created sexual expectations and demands, for instance, to perform certain sexual acts. The informants expressed contradictory feelings towards pornography and felt that sexuality was separated from intimacy. A moral attitude was described and examples of stereotypic gender roles were given. To deal with the current sexual norm, informants had different individual handling strategies and attitudes to pornography, namely liberal, normalization, distance, feminist or conservative. Limitations of this study were the small sample size and that results from a qualitative research study cannot be generalized. The results contribute to an understanding of how pornographic material can influence young peoples' thoughts, reflections and sexual behaviour. This indicates the importance, for personnel at youth centres and schools, to discuss sexual behaviour and how sexuality is portrayed in pornographic material with young people.

  • 10.
    Håkanson, Cecilia
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Sandberg, Jonas
    Jönköpings universitet .
    Ekstedt, Mirjam
    Kungliga tekniska högskolan, Stockholm.
    Kenne Sarenmalm, Elisabeth
    Skaraborgs sjukhus.
    Christiansen, Mats
    Karolinska institutet.
    Öhlen, Joakim
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Providing Palliative Care in a Swedish Support Home for People Who Are Homeless.2015In: Qualitative Health Research, ISSN 1049-7323, E-ISSN 1552-7557Article in journal (Refereed)
  • 11.
    Håkanson, Cecilia
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC. Department of Neurobiology, Care science and Society, Karolinska Institutet, Stockholm, Sweden.
    Seiger Cronfalk, Berit
    Ersta Sköndal University College, Palliative Research Centre, PRC. Department of Oncology/Pathology, Karolinska Institutet, Stockholm, Sweden, Stord Haugesund University College, Norway.
    Henrikssen, Eva
    Department of Neurobiology, Care science and Society, Karolinska Institutet, Stockholm, Sweden, FOUnu, Stockholm County Council, Stockholm, Sweden.
    Norberg, Astrid
    Ersta Sköndal University College, Palliative Research Centre, PRC. Department of Nursing, Umeå University, Umeå, Sweden.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC. Department of Neurobiology, Care science and Society, Karolinska Institutet, Stockholm, Sweden, Stockholms Sjukhem foundation, Research, Development and Education Unit, Stockholm, Sweden.
    Sandberg, Jonas
    Ersta Sköndal University College, Palliative Research Centre, PRC. Department of Nursing, School of Health Sciences, Jönköping University, Jönköping, Sweden.
    First-Line Nursing Home Managers in Sweden and their Views on Leadership and Palliative Care2014In: Open Nursing Journal, ISSN 1874-4346, E-ISSN 1874-4346, Vol. 8, p. 71-78Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to investigate first-line nursing home managers’ views on their leadership and related to that, palliative care. Previous research reveals insufficient palliation, and a number of barriers towards implementation of palliative care in nursing homes. Among those barriers are issues related to leadership quality. First-line managers play a pivotal role, as they influence working conditions and quality of care.

    Nine first-line managers, from different nursing homes in Sweden participated in the study. Semi-structured interviewswere conducted and analysed using qualitative descriptive content analysis. In the results, two categories were identified: embracing the role of leader and being a victim of circumstances, illuminating how the first-line managers handle expectations and challenges linked to the leadership role and responsibility for palliative care. The results reveal views corresponding to committed leaders, acting upon demands and expectations, but also to leaders appearing to have resigned from the leadership role, and who express powerlessness with little possibility to influence care. The first line managers reported their own limited knowledge about palliative care to limit their possibilities of taking full leadership responsibility for implementing palliative care principles in their nursing homes.

    The study stresses that for the provision of high quality palliative care in nursing homes, first-line managers need to be knowledgeable about palliative care, and they need supportive organizations with clear expectations and goals about palliative care. Future action and learning oriented research projects for the implementation of palliative care principles, in which first line managers actively participate, are suggested.

  • 12.
    Håkansson, Cecilia
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Seiger Cronfalk, Berit
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Henriksen, Eva
    Karolinska institutet.
    Norberg, Astrid
    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.
    First-line managers’ views on leadership and palliative care in Swedish nursing homes2014In: Open Nursing Journal, ISSN 1874-4346, E-ISSN 1874-4346, Vol. 8, p. 71-78Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to investigate first-line nursing home managers' views on their leadership and related to that, palliative care. Previous research reveals insufficient palliation, and a number of barriers towards implementation of palliative care in nursing homes. Among those barriers are issues related to leadership quality. First-line managers play a pivotal role, as they influence working conditions and quality of care. Nine first-line managers, from different nursing homes in Sweden participated in the study. Semi-structured interviews were conducted and analysed using qualitative descriptive content analysis. In the results, two categories were identified: embracing the role of leader and being a victim of circumstances, illuminating how the first-line managers handle expectations and challenges linked to the leadership role and responsibility for palliative care. The results reveal views corresponding to committed leaders, acting upon demands and expectations, but also to leaders appearing to have resigned from the leadership role, and who express powerlessness with little possibility to influence care. The first line managers reported their own limited knowledge about palliative care to limit their possibilities of taking full leadership responsibility for implementing palliative care principles in their nursing homes. The study stresses that for the provision of high quality palliative care in nursing homes, first-line managers need to be knowledgeable about palliative care, and they need supportive organizations with clear expectations and goals about palliative care. Future action and learning oriented research projects for the implementation of palliative care principles, in which first line managers actively participate, are suggested.

  • 13.
    Sandberg, Jonas
    Mälardalens högskola.
    Flytten till ett särskilt boende2004In: Att vara äldre: "...man har ju sina krämpor..." / [ed] Kerstin Blomqvist, Anna-Karin Edberg, Lund: Studentlitteratur, 2004, p. 157-166Chapter in book (Other academic)
  • 14.
    Sandberg, Jonas
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences.
    Eriksson, Henrik
    Att lära sig vårda på äldre dar2010In: Vårdpedagogiska utmaningar / [ed] Sonia Bentling & Bosse Jonsson, Stockholm: Liber , 2010, 1, p. 248-266Chapter in book (Other academic)
  • 15.
    Sandberg, Jonas
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences.
    Eriksson, Henrik
    Bortom omsorgsnormen: anhörigvård i genusteoretisk belysning2010In: Äldres hälsa och ohälsa: en introduktion till geriatrisk omvårdnad / [ed] Anna Ekwall, Lund: Studentlitteratur , 2010, 1, p. 63-74Chapter in book (Other academic)
  • 16.
    Sandberg, Jonas
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences.
    Eriksson, Henrik
    From alert commander to passive spectator: older male carers' experience of receiving formal support.2009In: International journal of older people nursing, ISSN 1748-3743, Vol. 4, no 1, p. 33-40Article in journal (Refereed)
    Abstract [en]

    Aim.  The aim was to describe older male carers' experience of receiving formal support. Background.  To older male carers, creating new roles seems to be important. Their need for support in their caregiving is poorly understood. Design.  A qualitative approach with a critical perspective on men and masculinities was used. Participants.  Focus groups comprising a total of 11 men were used. Methods.  Qualitative content analysis was adopted. Results.  Three categories of response were found: 'using ad hoc solutions for maintaining a protective environment', 'coping but being left behind' and 'recapturing the caregiving role'. Discussion.  Not only the quantity of support services offered to older male carers but also their quality dimension, based on a genuine understanding of the men's support needs, must be addressed. Conclusions.  Professional caregivers attempt to relieve the men of their care obligations entirely. A reciprocal arrangement involving the men as partners, instead, may help them to regard their caring experience as valuable, which is important to their self-image. Relevance to clinical practice.  These men's socially based networks need to be recognized by professional caregivers as important, to reframe the men's identity and notion of masculinity.

  • 17.
    Sandberg, Jonas
    et al.
    Ersta Sköndal University College, Palliative Reserch Centre, PRC.
    Eriksson, Henrik
    Makt, genus och identitet2013In: Palliativ vård: Begrepp och perspektiv i teori och praktik / [ed] Birgitta Andershed, Britt-Marie Ternestedt & Cecilia Håkanson, Lund: Studentlitteratur, 2013, p. 61-69Chapter in book (Other academic)
  • 18.
    Sandberg, Jonas
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences.
    Eriksson, Henrik
    ‘The hard thing is the changes’: the importance of continuity for older men caring for their wives2007In: Quality in ageing : policy, practice and research, ISSN 1471-7794 [print] 2042-8766 [online], Vol. 8, no 2, p. 5-15Article in journal (Refereed)
    Abstract [en]

    Few studies have been conducted into the contextual and relational aspects of male caregiving that include analysis by gender and family relationships. The aim was to gain understanding of the experience of older men as caregivers for an ill spouse. A narrative approach was adopted for this study. Interviews were conducted with three older men between 65 and 78 years, who had been caring for their wives for between one and 12 years. Two main categories emerged: taking on a new and unfamiliar role, and learning to live with the new role. The results also show how the men seek to maintain continuity in their relationships with the wives they are caring for. The findings can be understood in the light of a major life transition of how older men providing care for a spouse create new roles and how they cope with the changes in the marital relationship. A sense of continuity in the process of caring is important for men to help them find the strength to continue as caregivers.

  • 19.
    Sandberg, Jonas
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences.
    Eriksson, Henrik
    Holmgren, Jessica
    Pringle, Keith
    Keeping the family balance: adult daughters' experiences of roles and strategies when supporting caring fathers2009In: European Journal of Social Work, ISSN 1369-1457, E-ISSN 1468-2664, Vol. 12, no 2, p. 233-245Article in journal (Refereed)
  • 20. Sandberg, Jonas
    et al.
    Lundh, U
    Nolan, M R
    Placing a spouse in a care home: the importance of keeping.2001In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 10, no 3, p. 406-16Article in journal (Refereed)
    Abstract [en]

    Despite a universal policy of community care, the number of frail older people entering care homes is likely to increase in the future. There have been relatively few studies exploring the experience of spouses who have placed a partner in care. Due to a lack of preparation, the placement process is often ad hoc, with little attention being given to spouses' emotional reactions or their efforts to maintain their relationship with their partner. The relationship between care home staff and families is often superficial and strained. There is a need for more proactive efforts to facilitate a partnership between care home staff and families.

  • 21.
    Sandberg, Jonas
    et al.
    Högskolan i Jönköping.
    Lundh, Ulla
    Nolan, Mike
    Placing a spouce in a care home for older people: (re)-constructing roles and relationships2003In: Partnerships in Family Care: Understanding the caregiving career / [ed] Nolan M., Lundh U. Grant G. & Keady J., Maidenhead: Open University Press, 2003, p. 199-217Chapter in book (Refereed)
  • 22.
    Sandberg, Jonas
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences.
    Pringle, Keith
    "It feels like a defoliation": older men´s notions of informal support as primary caregivers2008In: Norma : Nordic journal for masculinity studies, ISSN 1890-2138, Vol. 3, no 1, p. 48-61Article in journal (Refereed)
    Abstract [en]

    Little interest has been given to painting a broader picture of men’s relation to caring and care giving activities and when it has, it has often tended to uphold stereotypic notions regarding men’s attitudes to caring activities. This article explores older men’s account of becoming and being primary caregivers as a result of unexpected life events. By interviewing eleven older men in three focus group sessions questions about masculinity and the cultural understanding about being older men in relation to caregiving and support was approached. In our result we describe the caregiving men’s social and personal changes as a consequences of caregiving as a defoliation process where the difficulty in upholding relationships with unconventional men and the caregiving men’s difficulty in upholding relations with people, who embrace hegemonic ideals about masculinity, is framing their lives as caregiving men.

    From this position caregiving men reach out and connect with other men who share  the same experiences. We suggest that in the network of men who are, and is about to become, primary caregivers, the principle of “paying it forward” seems to be understood as the most valued support. Paying it forward help the men to uphold their caring experience as valuable and gives the men a position as skilled.

  • 23. Stenwall, Ewa
    et al.
    Jönhagen, Maria Eriksdotter
    Sandberg, Jonas
    Ersta Sköndal University College, Department of Health Care Sciences.
    Fagerberg, Ingegerd
    Karolinska institutet.
    The older patient's experience of encountering professional carers and close relatives during an acute confusional state: An interview study2008In: International Journal of Nursing Studies, ISSN 0020-7489, E-ISSN 1873-491X, Vol. 45, no 11, p. 1577-1585Article in journal (Refereed)
    Abstract [en]

    Background: Acute confusional state (ACS) is a common and difficult condition among older patients with a variety of opinions about how to act when encountering patients with ACS. Few studies to our knowledge have been found exploring the encounter from the perspective of older patients and their experiences. Objectives: The aim of this study was to understand the experiences of older patients with ACS when encountering professional carers and close relatives. Design: In order to understand older patients’ experiences of encounters during their ACS a latent qualitative content analysis was used. Settings: The data collection took place at two geriatric wards in an emergency hospital in a metropolitan area. Participants: The inclusion criteria included being aged 65 years or older and having suffered from ACS, according to the DSM-IV criteria, and having regained lucidity. Participants were being cared for at one of two geriatric wards. Patients diagnosed with dementia were excluded. About 150 patients were screened, 67 patients fulfilled the inclusion criteria and seven patients were included in the study, four females and three males, aged between 78 and 98 years. Methods: Data were collected by interviews. Results: Three themes were found, namely; ‘Feeling lonely within the perceived reality of ACS’, with three sub-themes: the unequal encounter, keeping a distance and being an outsider; ‘striving towards understanding’ with two sub-themes: searching for answers and it takes time to understand; and ‘feelings of participation in the encounter’ with two sub-themes: a mutual understanding and feeling safe and supported. Conclusions: Within the encounter the older patients with ACS are searching for answers to what is happening and why. The patients feel dependent on the persons they encounter and their willingness to understand and communicate. The patients also feel lonely, unnecessarily questioned and untrustworthy; but they can also feel safe, trusted and understood.

  • 24. Stenwall, Ewa
    et al.
    Sandberg, Jonas
    Ersta Sköndal University College, Department of Health Care Sciences.
    Jönhagen, Eriksdotter
    Fagerberg, Ingegerd
    Mälardalens högskola.
    Relatives' experiences of encountering the older person with acute confusional state: experiencing unfamiliarity in a familiar person2008In: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 3, no 4, p. 243-251Article in journal (Refereed)
    Abstract [en]

    Aims and objectives. The aim was to understand the lived experience of close relatives encountering older persons with acute confusional state.

    Background. Little is known about relatives of patients with acute confusional state and their experiences while encountering a family member exhibiting acute confusional state.

    Design. A descriptive phenomenological research approach was used.

    Methods. Data were collected by interviewing 10 close relatives of older people with acute confusional state at two hospital wards.

    Results. Relatives experience the encounter as encountering a familiar person who has suddenly become unfamiliar, struggling to separate the familiar from the unfamiliar and trying to understand the causes of acute confusional state and the behaviour of the person. Six constituents illuminate the phenomenon: 'change in the other person', 'rapid and unexpected changes', 'experiencing insecurity in the encounter', 'trusting or mistrusting the other person', 'experiencing loss' and 'experiencing exposure'.

    Relevance to clinical practice. It is important for professional carers to support relatives on how to encounter the person with acute confusional state, and to co-operate with relatives to gain knowledge about the unique person behind the acute confusional state.

    Conclusion. Relatives' difficulties in dealing with strong emotions evoked within the encounter, experiencing limitation and lack of trust is essential knowledge for professional carers in all care settings.

  • 25. Stenwall, Ewa
    et al.
    Sandberg, Jonas
    Mälardalens högskola.
    Jönhagen, Maria Eriksdotter
    Fagerberg, Ingegerd
    Mälardalens högskola.
    Encountering the older confused patient: professional carers' experiences 2007In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 21, no 4, p. 515-522Article in journal (Refereed)
    Abstract [en]

    The study's rationale: Confusion is a common condition among older patients and often a fearful experience. Opinions vary as to how to communicate with and care for confused patients and professional carers often find the patients' situation almost as distressing as the patients' themselves do.

    Aims and objectives: The aim of this study was to describe professional carers' experiences of their encounters with older confused patients.

    Methodological design and justification: Data was collected from interviews with 10 professional carers working on a ward specializing in the care of older confused patients. A descriptive phenomenological research approach was used to gather knowledge of professional carers' experiences of encounters with older confused patients.

    Ethical issues and approval: A Regional Board of Research Ethics granted ethical permission for the study. The appropriate ethical principles were followed. The participants were contacted personally and received a letter providing information on the study. Written consent was requested before the interview. If needed, the participants were able to get in contact with the staff health service for a follow-up after the interview. Names or places have been changed in order to ensure confidentiality.

    Results: The encounter with the confused patient is experienced as an encounter with an unfamiliar person, where the patients' actions and words are unforeseeable and with a lack of immediate trust. The essential meaning is further illuminated by the meaning constituents: the unforeseeable encounter, always being on guard and using oneself as a tool.

    Relevance to clinical practice: This paper focuses on the importance of encouraging professional carers to pay attention to the complexity of the encounter with the confused patient, reflecting upon their own behaviour within these encounters and the importance of knowledge of the patient's preferred senses and life stories. Caring for confused patients involves a great responsibility where both the professional carers and the patients are vulnerable and exposed.

  • 26.
    Sveen, Josefin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Pohlkamp, Lilian
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska Institutet.
    Öhlén, Joakim
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Göteborgs universitet.
    Sandberg, Jonas
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Högskolan i Jönköping.
    Brandänge, Kristina
    Ersta sjukhus, Stockholm.
    Gustavsson, Petter
    Karolinska Institutet.
    Posttraumatic stress among not-exposed traumatically bereaved relatives after the MS Estonia disaster2016In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203Article in journal (Refereed)
    Abstract [en]

    Background: Little is known about posttraumatic stress (PTS) reactions in bereaved individuals following loss in disaster who were not directly exposed to disaster. The aim of the present study was to examine the course of PTS up to three years after losing relatives in the MS Estonia ferry disaster, one of the worst maritime disasters in modern times.

    Methods: Seven postal surveys were sent out over three years post-disaster. The respondents were invited and added consecutively during the three years and 938 relatives participated in one or more of the surveys, representing 89% of the MS Estonia's Swedish victims. The survey included the Impact of Event Scale (IES) to measure PTS. Latent growth curve modeling was used to analyze PTS over time.

    Results: The majority of bereaved individuals had high levels of PTS. At three years post-loss, 62% of the respondents scored above the recommended cut-off value on the IES. Over time, PTS symptoms declined, but initially high symptoms of PTS were associated with a slower recovery rate.

    Conclusion: The present finding suggests that being an indirectly-exposed disaster-bereaved close-relative can lead to very high levels of PTS which are sustained for several years.

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