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  • 1.
    Breitholtz, Agneta
    et al.
    Mälardalens högskola, Akademin för hälsa, vård och välfärd, Hälsa och välfärd. Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    Snellman, Ingrid
    Mälardalens högskola, Akademin för hälsa, vård och välfärd, Hälsa och välfärd.
    Fagerberg, Ingegerd
    Department of Health Care Sciences of Ersta Sköndal University College and Researcher.
    Older people’s dependence on caregivers’ help in their own homes and their lived experiences of their opportunity to make independent decisions2013Ingår i: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 8, nr 2, s. 139-148Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    The aim of this study was to illuminate the meaning of older people’s dependence on caregivers’ help, and of their opportunity to make independent decisions.

    Background. Throughout the world, the older population is growing, and in Sweden, the system of care for older people is currently undergoing change. Older people in the need of care are expected to live at home for as long as possible.

    Design.A qualitative and life world approach was used.

    Methods. Audio-taped interviews were conducted with twelve older persons living at home, dependent on daily municipal home help service. A phenomenological hermeneutic method was utilised to disclose the meanings of lived experiences.

    Finding. The findings revealed three themes : being facilitated to make one’s own decisions, being hindered from making one’s own decisions, struggling for vs. resigning oneself to losing the opportunity to make one’s own decisions.

    The comprehensive understanding revealed that as older people become more dependent on caregivers’ help, their opportunity to self-determine is challenged and this is stressful for them.

    Conclusion. The older persons assess their opportunity to self-determine differently, depending on who they are as a person. The caregivers need an awareness of this, and further research is needed to gain knowledge and understanding of how caregivers can improve the way they support and enhance older people’s opportunity to decide for themselves.

    Implications for practice. The findings revealed older persons need to exercise more self-determination and caregivers’ need for knowledge to enable this. Further, it indicates a move towards a person-centred approach to focus on persons as individuals and see them as interdependent. The findings contribute to improvements in similar contexts worldwide.

  • 2.
    Ehrlich, Kethy
    et al.
    Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institute, Huddinge, Sweden; Department of Geriatric Medicine, Danderyd Hospital, Stockholm, Sweden .
    Boström, Anne-Marie
    Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institute, Huddinge, Sweden; Department of Geriatric Medicine, Danderyd Hospital, Stockholm, Sweden.
    Mazaheri, Monir
    Mälardalens högskola, Akademin för hälsa, vård och välfärd, Hälsa och välfärd.
    Heikkilä, Kristiina
    Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institute, Huddinge, Sweden.
    Emami, Azita
    Karolinska Institute, Stockholm, Sweden; Biobehavioral Nursing & Health Systems, School of Nursing, University of Washington, Seattle, WA, USA.
    Family caregivers’ assessments of caring for a relative with dementia: A comparison of urban and rural areas2015Ingår i: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 10, nr 1, s. 27-37Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Aim: This study aimed to describe and compare urban and rural family caregivers' reactions to caring for a relative with dementia and to examine the associations between caregiving and socio-demographic factors. Background: Most studies on family caregivers' experiences caring for older people with dementia have been conducted in urban areas, and little is known about the experiences of family caregivers living in rural areas. Design: A cross-sectional study design was used. Methods: A total of 102 caregivers (response rate 85%) from urban (n = 57) and rural (n = 46) areas completed the Caregiver Reaction Assessment (CRA) Scale and demographic information. Data were analysed using descriptive and inferential statistics and linear regression models. Results: Overall, family caregivers reported high satisfaction even if they also reported high impact on finances and daily living. Rural caregivers experienced a higher negative impact on finances but reported more support from family members than urban caregivers. Age, gender and relationship were significantly associated with four of the five CRA subscales. Educational level and geographical setting were not associated with any of the CRA subscales. Conclusions: The results of the study raise questions about the financial situation of older female caregivers and on the expectations of built-in family structures in urban and rural areas. Further studies focusing on the meaning and constitution of a family would help us to understand how these factors influence family caregiving both in rural and urban areas. Implications for practice: To provide person-centred care and to avoid stereotyped caregiving, a better picture of traditions in family caregiving can improve a more differentiated and appropriate professional caregiving pliable with the cultural context in which it is carried out.

  • 3.
    Eriksson, Henrik
    et al.
    Mälardalens högskola, Akademin för hälsa, vård och välfärd.
    Sandberg, Jonas
    From alert commander to passive spectator: older male carers' experience of receiving formal support2009Ingår i: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 4, nr 1, s. 33-40Artikel i tidskrift (Refereegranskat)
    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

  • 4.
    Eriksson, Henrik
    et al.
    Mälardalens högskola, Institutionen för vård- och folkhälsovetenskap.
    Sandberg, Jonas
    Mälardalens högskola, Institutionen för vård- och folkhälsovetenskap.
    Transition in men's caring identities: From home-based care to nursing home placement2008Ingår i: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 3, nr 2, s. 131-137Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Keywords:

    • caring;
    • gender;
    • informal care;
    • nursing home

    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.

  • 5.
    Eriksson, Henrik
    et al.
    Mälardalens högskola, Akademin för hälsa, vård och välfärd, Hälsa och välfärd.
    Sandberg, Jonas
    School of Health Sciences, Jönköping University, Jönköping, Sweden.
    Hellström, Ingrid
    Department of Social and Welfare Studies, Linköping University, Norrköping, Sweden.
    Experiences of long-term home care as an informal caregiver to a spouse: Gendered meanings in everyday life for female carers2013Ingår i: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 8, nr 2, s. 159-165Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    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.

  • 6.
    Gransjön Craftman, A.
    et al.
    Sophiahemmet University, Stockholm, Sweden.
    Marmstål Hammar, Lena
    Mälardalens högskola, Akademin för hälsa, vård och välfärd, Hälsa och välfärd. Karolinska Institutet, Stockholm, Sweden.
    von Strauss, E.
    Stockholm University, Stockholm, Sweden.
    Hillerås, P.
    Sophiahemmet University, Stockholm, Sweden .
    Westerbotn, M.
    Sophiahemmet University, Stockholm, Sweden .
    Unlicensed personnel administering medications to older persons living at home: A challenge for social and care services2015Ingår i: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 10, nr 3, s. 201-210Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: Administration of medication to care recipients is delegated to home-care assistants working in the municipal social care, alongside responsibility for providing personal assistance for older people. Home-care assistants have practical administration skills, but lack formal medical knowledge. Aim: The aim of this study was to explore how home-care assistants perceive administration of medication to older people living at home, as delegated to them in the context of social care. Methods: Four focus groups consisting of 19 home-care assistants were conducted. Data were analysed using qualitative content analysis. Results: According to home-care assistants, health and social care depends on delegation arrangements to function effectively, but in the first place it relieves a burden for district nurses. Even when the delegation had expired, administration of medication continued, placing the statutes of regulation in a subordinate position. There was low awareness among home-care assistants about the content of the statutes of delegation. Accepting delegation to administer medications has become an implicit prerequisite for social care work in the municipality. Conclusions: Accepting the delegation to administer medication was inevitable and routine. In practice, the regulating statute is made subordinate and consequently patient safety can be threatened. The organisation of health and social care relies on the delegation arrangement to meet the needs of a growing number of older home-care recipients. Implications for practice: This is a crucial task which management within both the healthcare professions and municipal social care needs to address, to bridge the gap between statutes and practice, to create arenas for mutual collaboration in the care recipients' best interest and to ensure patient safety. 

  • 7.
    Gustafsson, Lena-Karin
    et al.
    Mälardalens universitet, Akademin för hälsa, vård och välfärd, Hälsa och välfärd.
    Asztalos Morell, Ildikó
    Mälardalens universitet, Akademin för hälsa, vård och välfärd, Hälsa och välfärd. Department of Urban and Rural Development Swedish University of Agriculture, Uppsala, Sweden.
    Johansson, Carl
    Mälardalens universitet, Akademin för hälsa, vård och välfärd, Hälsa och välfärd.
    Ray, Santa De
    School of Nursing Bharati Vidyapeeth University deemed College, Pune, India.
    Informal caregiving from the perspectives of older people living alone in India2022Ingår i: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743Artikel i tidskrift (Refereegranskat)
    Abstract [en]

     Background:  The cultural and social norms in India stipulate that family and preferably children of the older person, provide the support and care that is needed. In recent years, we have witnessed an overall upsurge in interest in informal care from all countries in the developed world considering their ageing populations. The older people living alone group is, especially interesting in this matter, since it seems to deviate from the expectations of extended family living.

     Objective:  The aim was to describe older persons' experiences of informal care when living alone in India.

     Methods:  The study has a hermeneutic design, analysing interviews of older persons living alone in India.

     Results:  Findings revealed informal care as the thematic patterns: Informal care as a fundamental human responsibility, an obligation and thereby a way to act in 'common sense'. It was a way of 'paying-back' care that they had received from others in their life history, motivated by governmental care was not presented as an option. Informal care also created safety by the provision of alert and actionable care by loved ones, including spatial safety. Most of the informants experienced themselves as informal caregivers assisting others in need even if they themselves were old and fragile. Providing self care was also seen as a part of informal care conducted by capable and worthy persons. They also pointed out their own obligation to seek informal care and even to listen to the suggestions of younger generations regarding the type and scope of care.

     Conclusions/implications for practice:  Informal care in India is not only dependent on having children who ensure that you receive the care you need. Extended family, neighbours and friends feel a basic human obligation to care for the older people in their environment. This responsibility is deeply rooted even within the older people who become fragile in old age.

  • 8.
    Karlsson, Inger
    et al.
    Karolinska Institutet.
    Ekman, Sirkka-Liisa
    Karolinska Institutet.
    Fagerberg, Ingegerd
    Mälardalens högskola, Institutionen för vård- och folkhälsovetenskap.
    To both be like a captain and fellow worker of the caring team: the meaning of Nurse Assistants´expectations of Registered Nurses in Swedish residential care homes2008Ingår i: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 3, nr 1, s. 35-45Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Aim. To describe the expectations of and to illuminate the meaning of the Nurse Assistants' (NA) expectations of Registered Nurses (RN) who are responsible for the care of older people living in residential care homes in Sweden. Background. Older people in Sweden who are provided with residential care are extremely frail and incapable of independent living. Therefore, when providing care, RN and NA encounter older people who require a great deal of care. An important precondition for the provision of satisfactory care is to have adequate collaboration between NAs and RNs and their expectations of each other. In this paper, the focus is on the NAs expectations of the RNs. Method. The study is based on a qualitative approach and a phenomenological-hermeneutical method. Ten NAs were interviewed and asked to narrate as freely as possible, about their expectations of RNs. The narratives were audio taped and transcribed verbatim. The analytical process includes the following steps; naive reading, structural analysis, comprehensive understanding and reflection. Results. The RNs were expected to take responsibility for being fellow human beings and experts in providing care as well as always available to participate in caring. The RNs were expected to make stand-alone decisions and create a sense of safety for both older people and the NAs and have the courage to work alone and create a safe environment for both the older people and the NAs. The meaning of these expectations was that the RNs are like a captain in providing care, but at the same time, fellow workers. Conclusion. When the RNs do not meet the NAs expectations, there is a risk of conflict and therefore also a risk that an unsafe environment being created when caring for older people.

  • 9.
    Stenwall, Ewa
    et al.
    Mälardalens högskola, Akademin för hälsa, vård och välfärd.
    Sandberg, Jonas
    Mälardalens högskola, Akademin för hälsa, vård och välfärd.
    Eriksdotter Jönhagen, Maria
    Karolinska Institutet.
    Fagerberg, Ingegerd
    Mälardalens högskola, Akademin för hälsa, vård och välfärd.
    Relatives' experiences of encountering the older person with acute confusional state: experiencing unfamiliarity in a familiar person2008Ingår i: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 3, nr 4, s. 243-251Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Keywords:

    • acute confusional state;
    • encounter;
    • lived experience;
    • older patient;
    • relatives

    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.

  • 10.
    Sundler, Annelie Johansson
    et al.
    University of Borås, Borås, Sweden.
    Hjertberg, F.
    Marks municipality, Mark, Sweden.
    Keri, H.
    Jönköping municipality, Jönköping, Sweden.
    Holmström, Inger
    Mälardalens högskola, Akademin för hälsa, vård och välfärd, Hälsa och välfärd. Uppsala University, Uppsala, Sweden.
    Attributes of person-centred communication: A qualitative exploration of communication with older persons in home health care2020Ingår i: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 15, nr 1, artikel-id e12284Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: Previous research points to challenges related to the home healthcare of older persons and to the complexity of communication. Although person-centred care has been advocated widely, there remains a need for in-depth knowledge on how to enable person-centred and supportive communication in the care of older persons. Aim: The aim of this study was to explore attributes of person-centred communication between nurses and older persons being cared for in their home. Methods: A descriptive study with a qualitative approach was conducted. A data set from the COMHOME-study consisting of 77 audio-recorded home healthcare visits between registered nurses and older persons was analysed with a method for qualitative thematic analysis. Results: The findings indicate that the attributes of person-centred communication comprise recognising, inviting and involving older persons. To facilitate this form of communication, attentiveness and responsiveness on the part of RNs seemed significant. Person-centred communication was facilitated when the RNs used verbal expressions to emphasise and acknowledge the older persons’ views and were attentive to their emotions and expressions. Conclusion: The nurses’ attentiveness and responsiveness seems important for person-centred communication with older persons. Communication skills are needed to recognise, invite and involve older persons in their care and to support their health and well-being. Implication for practice The importance of communication which facilitate a person-centred approach by nurses should be acknowledged when caring for older persons and included in education and training.

  • 11.
    Swall, Anna
    et al.
    Högskolan Dalarna.
    Williams, Christine
    Florida Atlantic Univeristy, USA.
    Hammar Marmstål, Lena
    School of Education, Health and Society, Falun. .
    THE VALUE OF US: EXPRESSIONS OF TOGETHERNESS IN COUPLES WHERE ONE SPOUSE HAS DEMENTIA2019Ingår i: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 3, nr suppl 1, artikel-id S660.Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND:

    Living with dementia involves both illness and health, and self-care and care from others. As most persons with dementia live in their own homes, dementia affects not only the person with the disease, but also family, commonly the partner. Research shows that spousal carers feel as though they are losing their partners since they can no longer share thoughts, feelings and experiences as a couple.

    AIM:

    The aim of the study was to describe the sense of togetherness of the spouses when one spouse has dementia.

    METHOD:

    The sample consists of 18 recorded conversations between 15 persons with dementia and their spouses. The filmed conversations were transcribed verbatim and then analysed using qualitative content analysis.

    FINDINGS:

    One overarching theme arose: Dementia preserved and challenged the value of "us." It can be challenging for a couple in which one partner has dementia to preserve a sense of togetherness and to have the relationship they wish for.

    CONCLUSION:

    Based on our results, we suggest that practitioners should help couples to strengthen their bond as a couple so as to maintain a sense of well-being. Future studies should examine couplehood under differing conditions, such as long- versus short-term relationships. Prior relationship quality may also be a factor that influences the sense of couplehood following a serious health challenge, such as dementia.

    IMPLICATION FOR PRACTICE:

    When spouses were able to live together, their relationship was enriched at many levels. Their love for each other strengthened them as a unit - as an "us" - where togetherness seemed to be strong. Future studies need to examine whether the sense of couplehood varies depending on the length of the relationship (i.e., a relationship of many years or a relatively new relationship)

  • 12.
    Swall, Anna
    et al.
    Dalarna Univ, Sch Educ Hlth & Soc, Falun, Sweden..
    Williams, Christine
    Florida Atlantic Univ, Coll Nursing, Boca Raton, FL 33431 USA..
    Marmstål Hammar, Lena
    Mälardalens högskola, Akademin för hälsa, vård och välfärd, Hälsa och välfärd. Dalarna Univ, Sch Educ Hlth & Soc, Falun, Sweden.;Karolinska Inst, Care Sci, Dept Neurobiol, Div Nursing, Stockholm, Sweden..
    The value of "us"-Expressions of togetherness in couples where one spouse has dementia2020Ingår i: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 15, nr 2, artikel-id e12299Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background Living with dementia involves both illness and health, and self-care and care from others. As most persons with dementia live in their own homes, dementia affects not only the person with the disease, but also family, commonly the partner. Research shows that spousal carers feel as though they are losing their partners since they can no longer share thoughts, feelings and experiences as a couple. Aim The aim of the study was to describe the sense of togetherness of the spouses when one spouse has dementia. Method The sample consists of 18 recorded conversations between 15 persons with dementia and their spouses. The filmed conversations were transcribed verbatim and then analysed using qualitative content analysis. Findings One overarching theme arose: Dementia preserved and challenged the value of "us." It can be challenging for a couple in which one partner has dementia to preserve a sense of togetherness and to have the relationship they wish for. Conclusion Based on our results, we suggest that practitioners should help couples to strengthen their bond as a couple so as to maintain a sense of well-being. Future studies should examine couplehood under differing conditions, such as long- versus short-term relationships. Prior relationship quality may also be a factor that influences the sense of couplehood following a serious health challenge, such as dementia. Implication for practice When spouses were able to live together, their relationship was enriched at many levels. Their love for each other strengthened them as a unit - as an "us" - where togetherness seemed to be strong. Future studies need to examine whether the sense of couplehood varies depending on the length of the relationship (i.e., a relationship of many years or a relatively new relationship).

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