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  • 1.
    Antonsson, Helena
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Isaksson, U
    Åström, Sture
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Lundström, Mats
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Effects and experiences of a web-based training program for professional carers working with people with learning disabilities and challenging behaviourManuskript (preprint) (Annet vitenskapelig)
  • 2.
    Antonsson, Helena
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. University West, Department of Health Sciences, Trollhättan, Sweden.
    Isaksson, Ulf
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Åström, Sture
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. University West, Department of Health Sciences, Trollhättan, Sweden.
    Lundström, Mats O.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Evaluation of a Web-Based Training Program for Professional Carers Working With People With Learning Disabilities and Challenging Behavior: A Pilot Study with SSED-Design2016Inngår i: Issues in Mental Health Nursing, ISSN 0161-2840, E-ISSN 1096-4673, Vol. 37, nr 10, s. 734-743Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    The interaction between people with intellectual disabilities and professional carers is often influenced by communicative difficulties contributing challenging behaviours. The aims of this study were to evaluate to a web-based training program aimed at improving carers' abilities to interact with people with learning disabilities who exhibit challenging behaviours and to explore carers' experiences of participating in such a program. A single-subject experimental design and mixed methods were used to integrate qualitative and quantitative data. Triangulation of questionnaires, interviews with carers, and assessments of one woman's behaviour was performed. The participants were professional carers aged 20 to 55 years. The web-based training program increased carers' abilities to handle challenging behaviours and decreased challenging behaviours in daily care. The program improved the opportunities to offer training to carers who work in community-based accommodations with limited time to receive training.

  • 3.
    Antonsson, Helena
    et al.
    Umeå universitet, Medicinsk fakultet, Omvårdnad.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinsk fakultet, Omvårdnad.
    Lundström, Mats
    Umeå universitet, Medicinsk fakultet, Omvårdnad.
    Åström, Sture
    Umeå universitet, Medicinsk fakultet, Omvårdnad.
    Caregivers' reflections on their interactions with adult people with learning disabilities.2008Inngår i: Journal of Psychiatric and Mental Health Nursing, ISSN 1365-2850, Vol. 15, nr 6, s. 484-91Artikkel i tidsskrift (Fagfellevurdert)
  • 4.
    Antonsson, Helena
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Åström, Sture
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Lundström, Mats
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Skilled interaction among professional carers in special accommodations for adult people with learning disabilities2013Inngår i: Journal of Psychiatric and Mental Health Nursing, ISSN 1351-0126, E-ISSN 1365-2850, Vol. 20, nr 7, s. 576-583Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    ACCESSIBLE SUMMARY: • Communicative difficulties affect interactions between people with learning disabilities and their carers. • Interactions between carers and residents in special accommodations for people with learning disabilities were recorded on video and skilled interactions were illuminated. • Results of the study show that skilled interaction between the carers and the people with learning disabilities is based upon being confirming, sharing daily life experience, giving time and space, and using congruent and distinct language.

    ABSTRACT: Communicative difficulties affect interactions between people with learning disabilities and their carers. Despite such difficulties, however, some carers seem to interact successfully with people who have limited ability to communicate verbally and exhibit challenging behaviour. This study aims to illuminate skilled interaction among carers working in special accommodations for people with learning disabilities. Interactions between 16 caregivers and 11 residents with learning disabilities were recorded on video. Verbal and non-verbal interaction skills among the carers were identified. Four caring situations with people with learning disabilities were chosen to illuminate skilled interaction. The transcribed text was subjected to qualitative content analysis and core stories were created. The results show that skilled interaction between the carers and the people with learning disabilities is based upon being confirming, sharing daily life experience, giving time and space, and using congruent and distinct language. In this paper we present examples that offer concrete suggestions of how to promote successful interaction and create meaning in the shared day-to-day life in special accommodations for people with learning disabilities.

  • 5.
    Birkeland, Anna-Lena
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för klinisk vetenskap, Pediatrik.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Rydberg, Annika
    Umeå universitet, Medicinska fakulteten, Institutionen för klinisk vetenskap, Pediatrik.
    Hägglöf, Bruno
    Umeå universitet, Medicinska fakulteten, Institutionen för klinisk vetenskap, Barn- och ungdomspsykiatri.
    Dahlgren, Lars
    Umeå universitet, Samhällsvetenskapliga fakulteten, Sociologiska institutionen.
    Facing bad news: a case study focusing on families having a child with congenital heart diseaseManuskript (preprint) (Annet vitenskapelig)
  • 6.
    Boström, Eva
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Isaksson, Ulf
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Lundman, Berit
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Hörnsten, Åsa
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Interaction between diabetes specialist nurses and patients during group sessions about self-management in type 2 diabetesInngår i: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134Artikkel i tidsskrift (Fagfellevurdert)
  • 7.
    Bölenius, Karin
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Brulin, Christine
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Personnel's Experiences of Phlebotomy Practices after Participating in an Educational Intervention Programme2014Inngår i: Nursing Research and Practice, ISSN 2090-1429, E-ISSN 2090-1437, s. 1-8, artikkel-id 538704Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background. Blood specimen collection is a common procedure in health care, and the results from specimen analysis have essential influence on clinical decisions. Errors in phlebotomy may lead to repeated sampling and delay in diagnosis and may jeopardise patient safety. This study aimed to describe the experiences of, and reflections on, phlebotomy practices of phlebotomy personnel working in primary health care after participating in an educational intervention programme (EIP). Methods. Thirty phlebotomists from ten primary health care centres participated. Their experiences were investigated through face-to-face interviews. Findings were analysed using qualitative content analysis. Results. The participants perceived the EIP as having opened up opportunities to reflect on safety. The EIP had made them aware of risks in relation to identification procedures, distractions from the environment, lack of knowledge, and transfer of information. The EIP also resulted in improvements in clinical practice, such as a standardised way of working and increased accuracy. Some said that the training had reassured them to continue working as usual, while others continued as usual regardless of incorrect procedure. Conclusions. The findings show that EIP can stimulate reflections on phlebotomy practices in larger study groups. Increased knowledge of phlebotomy practices improves the opportunities to revise and maximise the quality and content of future EIPs. Educators and safety managers should reflect on and pay particular attention to the identification procedure, distractions from the environment, and transfer of information, when developing and implementing EIPs. The focus of phlebotomy training should not solely be on improving adherence to practice guidelines.

  • 8.
    Bölenius, Karin
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Brulin, Christine
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Personnel’s experiences of venous blood specimen collection practices after participating in an educational intervention programmeManuskript (preprint) (Annet vitenskapelig)
    Abstract [en]

    Aim: The aim of this study was to describe primary healthcare personnel’s experiences of venous blood specimen collection practices after participating in an educational intervention programme.

    Background: Venous blood specimen collection is one of the most frequent procedures in healthcare, and the results from specimen analysis have essential influence on clinical decisions. Errors in specimen collection may lead to repeated sampling and delay in diagnosis, and may jeopardise patient safety.

    Design: This is a qualitative, descriptive study based on individual interviews subjected to qualitative content analysis.

    Methods: A convenient sample of 30 venous blood specimen collection personnel from ten primary healthcare centres participated in this study. Their experiences were investigated through face-to-face interviews and analysed using qualitative content analysis.

    Results: In this study we found that the participants experienced that the education opened up opportunities for reflections on safety. They became aware of risks in relation to identification procedures, environmental disturbances, lack of knowledge and transfer of information. They had also achieved improvements in clinical practice such as standardised ways of working and increased accuracy. However, some described that they felt strengthened in working as usual and worked as usual in a correct way or as usual in an incorrect way.

    Conclusions: Our findings indicate that a short educational programme opens up opportunities for reflections about safety. Education is needed to improve and maintain a good quality of venous blood specimen collection practices.

    Relevance to clinical practice: Developers of education should reflect on and pay attention to the identification procedure, environmental disturbances, and transferral of information, when developing educational intervention programmes, and not focus solely on improving adherence to guideline practices.

  • 9.
    Ekwall, Eva
    et al.
    School of Health and Medical Sciences, Örebro University, Örebro, Sweden.
    Ternestedt, Britt-Marie
    Department of Palliative Care Research, Ersta Sköndal University College, Stockholm, Sweden.
    Sorbe, Bengt
    School of Health and Medical Sciences, Örebro University, Örebro, Sweden.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Patients' perceptions of communication with the health care team during chemotherapy for the first recurrence of ovarian cancer2011Inngår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 15, nr 1, s. 53-58Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    AIM: The aim of this study was to explore what women with recurrent ovarian cancer perceived as important in their communication with the health care team.

    METHOD: Interviews were conducted with 12 women at the end of chemotherapy treatment at a department of gynecological oncology in central Sweden. The interviews were subjected to qualitative content analysis.

    RESULTS: The findings stress the importance for the health care team to offer each woman the opportunity for support in becoming familiar with the disease. This theme of becoming familiar with the disease is underpinned by four sub-themes: being acknowledged as a unique person, getting help to make sense of information regarding the disease and its treatment, having the opportunity to be involved and to share responsibility, and feeling confident that medical expertise was adequate. Becoming familiar with the disease was expressed as a process of understanding and assimilating the whole new situation. To achieve familiarity, the women needed help from the health care team to make sense of the information they received. They stressed the importance of being able to influence encounters with health professionals, in accordance with their own perspectives. Being acknowledged as a unique person was a prerequisite to achieve familiarity. Also important to the women was having the opportunity to share responsibility for their care and lives with someone from the health care team.

    CONCLUSION: Helping women with recurrence of ovarian cancer attain a sense of familiarity with the disease should be an important priority for health care providers.

  • 10.
    Graneheim, Ulla H.
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Department of Health Sciences, University West, Trollhättan, Sweden.
    Lindgren, Britt-Marie
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Lundman, Bent
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Methodological challenges in qualitative content analysis: A discussion paper2017Inngår i: Nurse Education Today, ISSN 0260-6917, E-ISSN 1532-2793, Vol. 56, s. 29-34Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    This discussion paper is aimed to map content analysis in the qualitative paradigm and explore common methodological challenges. We discuss phenomenological descriptions of manifest content and hermeneutical interpretations of latent content. We demonstrate inductive, deductive, and abductive approaches to qualitative content analysis, and elaborate on the level of abstraction and degree of interpretation used in constructing categories, descriptive themes, and themes of meaning. With increased abstraction and interpretation comes an increased challenge to demonstrate the credibility and authenticity of the analysis. A key issue is to show the logic in how categories and themes are abstracted, interpreted, and connected to the aim and to each other. Qualitative content analysis is an autonomous method and can be used at varying levels of abstraction and interpretation.

  • 11.
    Graneheim, Ulla Hällgren
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Hörnsten, Åsa
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    A lesson to learn: patients´critiques of diabetes nursing2011Inngår i: The Internet Journal of Advanced Nursing Practice, ISSN 1523-6064, Vol. 11, nr 1, s. 0-0Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background:  Most nurses sincerely wish the best for their patients and express frustration when they do not follow their advice. Reflecting on a critique of diabetes nursing from a patient perspective is essential to bridge gaps between health professionals and patients with diabetes and their understandings of possibly divergent treatment goals. Aim:  The aim of this study was to describe what patients with type 2 diabetes view as most important for diabetes specialty nurses to learn about receiving care for diabetes. Method:  An interview study was conducted among 44 patients diagnosed with type 2 diabetes over two years in Sweden. Narrative interviews were analysed using qualitative content analysis. Findings: ‘Not making a mountain out of a molehill’, ‘the more routine, the less life’, and ‘to err is human’ were identified as themes in the participants’ views about what nurses could learn, reflecting a criticism of some traditional aspects of diabetes nursing; i.e., a one-sided disease perspective, high adherence expectations, and a paternalistic attitude. Conclusion: Diabetes specialty nurses are focused on preventing complications by striving to regulate diabetes. A challenge for these nurses is to show they are partners; i.e., on the same side as the patients. Otherwise, nurses and patients will both lose. Possibly core caring values of nursing such as consoling, relieving, healing, and relating have not been given enough priority or have been replaced with more goal-oriented values such as treating, curing, and being effective.

  • 12.
    Graneheim, Ulla Hällgren
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Isaksson, Ulf
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Ljung, Inga-Maj Persson
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Jansson, Lilian
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Balancing between contradictions: the meaning of interaction with people suffering from dementia and "behavioral disturbances".2005Inngår i: The International Journal of Aging & Human Development, ISSN 0091-4150, E-ISSN 1541-3535, Vol. 60, nr 2, s. 145-157Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Interacting with people who suffer from dementia poses a challenge for care providers, and the presence of behavioral disturbances adds a further complication. Our article is based on the assumption that behavioral disturbances are meaningful expressions of experiences. Six narrative interviews were conducted with care providers with the aim of illuminating the meaning of interaction with people suffering from dementia and behavioral disturbances. The interviews were tape-recorded, transcribed into text, and interpreted using a phenomenological hermeneutic methodology. The findings indicate that interacting with people with dementia and behavioral disturbances, as narrated by care providers, means balancing between contradictions concerning meeting the person in my versus her/his world, feeling powerless versus capable, and feeling rejected versus accepted. Interaction involves being at various positions along these continua at different points in time. Furthermore, it means facing ethical dilemmas concerning doing good for the individual or the collective. This is interpreted as a dialectic process and is reflected on in light of Hegel's reasoning about the struggle between the master and the slave.

  • 13.
    Graneheim, Ulla Hällgren
    et al.
    Umeå universitet, Medicinsk fakultet, Omvårdnad.
    Jansson, Lilian
    Umeå universitet, Medicinsk fakultet, Omvårdnad.
    Hovering between heaven and hell: an observational study focusing on a woman with schizophrenia, dementia and 'disturbing behaviour', and on her care providersArtikkel i tidsskrift (Fagfellevurdert)
  • 14.
    Graneheim, Ulla Hällgren
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Jansson, Lilian
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    The meaning of living with dementia and disturbing behaviour as narrated by three persons admitted to a residential home.2006Inngår i: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 15, nr 11, s. 1397-403Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    AIM: The aim of our study was to illuminate the meaning of living with dementia and disturbing behaviour, as narrated by three persons admitted to a residential home. BACKGROUND: Living with dementia and so-called disturbing behaviour in an institution involves interaction with care providers and fellow residents and poses a challenge to all who are involved. METHODS: We asked the head nurses at a residential home to select persons with dementia and disturbing behaviour who were willing to be interviewed and able to communicate verbally. We performed 10 informal conversational interviews with three persons. The interviews were transcribed into text and interpreted using a phenomenological hermeneutic method inspired by Ricoeur's philosophy. RESULTS: The findings indicate that the meaning of living with dementia and disturbing behaviour, as narrated by three persons admitted to a residential home, is about being surrounded by disorder, being trapped by restriction and being set aside, as well as about being included. The findings are interpreted as a collapse of relations to self and others intertwined with occasional episodes of togetherness. This is reflected on in relation to the literature on homelessness and at-homeness and loss and maintenance of personal and social selves. RELEVANCE TO CLINICAL PRACTICE: The view others have of the person with dementia and of disturbing behaviour determines the nursing care given. Taking the residents' personal history and actual context into account, disturbing behaviour may be seen as a way persons with dementia express their story and maintain their self.

  • 15.
    Graneheim, Ulla Hällgren
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Lundman, Berit
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Experiences of loneliness among the very old: the Umeå 85+ project.2010Inngår i: Aging & Mental Health, ISSN 1360-7863, E-ISSN 1364-6915, Vol. 14, nr 4, s. 433-438Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    OBJECTIVE: This study aims to elucidate experiences of loneliness among the very old, who live alone. METHOD: Twenty-three women and seven men, aged 85-103 years, were interviewed about their experiences of loneliness. The text was subjected to qualitative content analysis. RESULT: The descriptions of loneliness were twofold: on the one hand, living with losses and feeling abandoned represented the limitations imposed by loneliness; and on the other, living in confidence and feeling free represented the opportunities of loneliness. The findings indicate that experiences of loneliness among the very old are complex, and concern their relations in the past, the present, and the future. CONCLUSION: Experiences of loneliness among the very old can be devastating or enriching, depending upon life circumstances and outlook on life and death. We interpreted these two aspects of loneliness as feelings of homelessness and at-homeness.

  • 16.
    Hallgren Graneheim, Ulla
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Jansson, Lilian
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Lindgren, Britt-Marie
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Hovering between Heaven and Hell: An Observational Study Focusing on the Interactions between One Woman with Schizophrenia, Dementia, and Challenging Behaviour and her Care Providers2015Inngår i: Issues in Mental Health Nursing, ISSN 0161-2840, E-ISSN 1096-4673, Vol. 36, nr 7, s. 543-550Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    This case study aims to illuminate the interactions between one woman (Alice) with schizophrenia, dementia, and challenging behaviour and her professional caregivers. We performed participant observations of these interactions and conducted informal interviews at the residential home where the woman lived. The transcripts were subjected to qualitative content analysis. The results showed that the interactions between Alice and her caregivers were experienced as hovering between heaven and hell. Alice struggled to bring order into her chaotic life world by splitting herself and others, and her caregivers struggled to protect Alice's and their own dignity by limiting her challenging behaviours. They also strived to understand their own and Alice's behaviour. Current practice in caring for people with challenging behaviour usually focuses on symptom reduction through medication and behavioural modification. Instead, we suggest moving toward an understanding of the experiences behind the challenging behaviours and designing person-centred care based on each patients' reality.

  • 17.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Beteendeförändringar vid demenssjukdom: ett personcentrerat perspektiv2009Inngår i: Personcentrerad omvårdnad i teori och praktik / [ed] David Edvardsson, Lund: Studentlitteratur , 2009Kapittel i bok, del av antologi (Annet vitenskapelig)
  • 18.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Störande beteende i interaktionen mellan personer med demens och deras vårdare2004Doktoravhandling, med artikler (Annet vitenskapelig)
    Abstract [sv]

    Det övergripande syftet med avhandlingen var att belysa innebörden i interaktionen mellan personer med demens och så kallat störande beteende och deras vårdare. I delstudierna I och II deltog en kvinna med frontallobsdemens och störande beteende (Ruth) respektive en kvinna med schizofreni, demens och störande beteende (Alice) och deras vårdare. Fjorton respektive 30 deltagande observationer samt sex respektive sju reflekterande samtal med vårdare genomfördes. Texterna tolkades med hjälp av kvalitativ innehållsanalys. I delstudie III gjordes narrativa intervjuer med sex vårdare och i delstudie IV genomfördes 10 informella samtal med tre personer med demens och störande beteende. Dessa texter tolkades med hjälp av fenomenologisk hermeneutisk metod.

    Innebörden i interaktionen mellan personerna med demens och störande beteende och deras vårdare handlar om att befinna sig i kaos och pendla mellan motsatser: att känna sig hemlös och hemma och att ”vara herre ”och ”vara slav”. Vårdarna upplever konflikter mellan att göra gott för individen och/eller kollektivet samt mellan de demensdrabbades beroende och önskan om självbestämmande.

    Såväl personerna med demens och störande beteende som deras vårdare pendlar mellan att känna sig hemlösa och hemma. Ruth lever i en fragmenterad värld där hon slåss för att skydda sitt revir. Hon kämpar också för att bli bekräftad samtidigt som hon bekräftar andra. Vårdarna bekräftar henne genom att möta henne i hennes värld. Alice lever i en tudelad värld där hon pendlar mellan ”himmel och helvete”. Hon misstror vårdarnas avsikter och slåss för sitt liv men hon visar också sin uppskattning och bekräftar vårdarnas ansträngningar. Även vårdarna upplever en tudelad värld. Innebörden i att leva med demens och störande beteende på institution handlar om att vara omgiven av oordning, fångad av begränsningar, satt åt sidan men också räknad med. Vårdarna befinner sig också i kaos och förstår inte vad det störande beteendet betyder. De upplever att de är fråntagna initiativet och känner sig utmattade och hjälplösa. Då och då upplever de att de har kontroll och känner sig dugliga och accepterade.

    Vårdarna pendlar mellan att ”vara herre” och ”vara slav”. Dialektiken mellan herre och slav handlar om kampen för ömsesidig bekräftelse. När vårdaren möter den demensdrabbade i sin egen (vårdarens) värld reduceras personen med demens till ett objekt. Därmed objektifierar vårdaren också sig själv. När vårdaren möter personen med demens i hans eller hennes värld, betraktar vårdaren den demensdrabbade som en betydelsefull person vars existens är viktig att bekräfta. Därmed känner sig också vårdaren betydelsefull.

    I hemmastaddheten bekräftas både personen med demens och vårdaren och kampen mellan herre och slav övergår i en Jag- Du relation. Störande beteenden är beteenden som inte bekräftar den andre. När vårdarna inte blir bekräftade upplever de personerna med demens vara störande och när personerna med demens inte blir bekräftade upplever de vårdarna vara störande. Bekräftelse uppstår i interaktioner som präglas av hemmastaddhet medan störande beteende visar sig i interaktioner som kännetecknas av hemlöshet.

  • 19.
    Hällgren Graneheim, Ulla H
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Slotte, Anna
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Markström Säfsten, Helena
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Lindgren, Britt-Marie
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Contradictions between ideals and reality: registered nurses' experiences of dialogues with in-patients in psychiatric care2014Inngår i: Issues in Mental Health Nursing, ISSN 0161-2840, E-ISSN 1096-4673, Vol. 35, nr 5, s. 395-402Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    This study explored ten registered nurses’ experiences of di- alogues with inpatients in psychiatric care. Data were collected through four focus group discussions, and two individual inter- views. The nurses described contradictions between their nursing ideals about dialogues and the reality faced in psychiatric inpatient care, resulting in an unsatisfactory work situation and feelings of insufficiency. We conclude that in order to improve quality of care and increase well-being for both patients and health care workers, nursing interventions, such as dialogues and meaningful activities, need to be offered to patients. A management that is visible and present on-site should encourage and facilitate health care work- ers’ participation in clinical supervision.

  • 20.
    Hällgren Graneheim, Ulla
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Hörnsten, Åsa
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Isaksson, Ulf
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Female caregivers' perceptions of reasons for violent behaviour among nursing home residents2012Inngår i: Journal of Psychiatric and Mental Health Nursing, ISSN 1351-0126, E-ISSN 1365-2850, Vol. 19, nr 2, s. 154-161Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Accessible summary

    • Threats and violence against professional caregivers present a growing health and safety problem in elderly care.
    • Caregivers attribute violent behaviour in the elderly to patient characteristics, caregiver approach and disorder in the environment.
    • Caregivers involved in a violent situation should strive to see the person behind the behaviour and the frustration that may have prompted it, to understand what the behaviour is meant to communicate, and to tailor interventions to the individual.

    Abstract

    Threats and violence against professional caregivers present a growing health and safety problem in elderly care. We aimed to explore female caregivers' perceptions of reasons for violent behaviour among nursing home residents. Forty-one caregivers at three nursing homes were interviewed and their responses were subjected to qualitative content analysis, which revealed three content areas of perceived reasons for patient violence: patient characteristics, caregiver approach and environmental aspects. The caregivers' perceptions were formulated in three core statements: ‘they (the residents) are not who they used to be’, ‘we (the caregivers) have acted inappropriately’ and ‘we (residents and caregivers) are all surrounded by disorder’. Our findings indicate that the reasons for violence are complex and multifactorial, so interventions should be individually tailored. Caregivers involved in a violent situation need to see the person behind the behaviour, try to interpret what the behaviour is meant to communicate and adjust the intervention according to individual need.

  • 21.
    Hällgren Graneheim, Ulla
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Jansson, Lilian
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Norberg, Astrid
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Interaction relating to privacy, identity, autonomy and security. An observational study focusing on a woman with dementia and 'behavioural disturbances', and on her care providers2001Inngår i: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 36, nr 2, s. 256-265Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    AIM: The study aims to illuminate how one woman with severe dementia and so-called behavioural disturbances acts in relation to her care providers and how the care providers act in relation to her. METHODS: Fourteen participant observations, including one woman with dementia and six care providers, were performed. A reflective dialogue focusing on the interaction between the woman and her care providers followed each observation. The tape-recorded observational notes and reflective dialogues were fixed as a text, which was subjected to a thematic content analysis. FINDINGS: The main findings are that the interaction between a woman with severe dementia and "behavioural disturbances" and her care providers relates to privacy, identity, autonomy and security. The phenomena are intertwined and also in conflict with each other. Interaction is a complex dialectic process in which those who are engaged meet problems that can be solved and are involved in dilemmas that cannot be solved, only related to.

  • 22.
    Hällgren Graneheim, Ulla
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Johansson, Anneli
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Lindgren, Britt-Marie
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Family caregivers' experiences of relinquishing the care of a person with dementia to a nursing home: insights from a meta-ethnographic study2014Inngår i: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 28, nr 2, s. 215-224Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Many people with dementia are cared for in their homes by family caregivers. As the dementia progresses, admission of the family member to a nursing home becomes inevitable. The aim of this meta-ethnographic study was to describe caregivers' experiences of relinquishing the care of a family member with dementia to a nursing home. A systematic literature search of PubMed, Cinahl and PsychInfo, between the years 1992 and 2012, was performed, and 10 qualitative articles, based on 180 family caregivers' experiences, were included. The family caregivers' described their experiences as a process that went from being responsible for the decision, through living with the decision, adjusting to a new caring role and having changed relationships. They felt unprepared and lonely with these changes. They experienced loss, guilt and shame, but also feelings of relief. Their roles in the nursing home environment were to make sure that the individual needs of the person with dementia were respected and to monitor the quality of care. They wished to maintain their relationship with the person with dementia and to establish meaningful relationships with caring staff. The process of relinquishing care is similar to a crisis process, which starts with a turning point, followed by a coping face and finally the outcome of the process. The adaption to the new situation can be facilitated if the family caregivers are recognised as partners in the care of the person with dementia. The family caregivers' unique knowledge of their relatives' previous life story should be acknowledged in both care planning and daily care. Welcoming family caregivers to regular meetings with staff can contribute to increase the feeling of partnership. Offering staff clinical supervision could be one way of preparing them to deal with the emotional strain reported by family caregivers.

  • 23.
    Hällgren Graneheim, Ulla
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. University West, Department of Health Sciences, Trollhattan, Sweden.
    Åstrom, Sture
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. University West, Department of Health Sciences, Trollhattan, Sweden.
    Until Death Do Us Part: Adult Relatives' Experiences of Everyday Life Close to Persons with Mental Ill-Health2016Inngår i: Issues in Mental Health Nursing, ISSN 0161-2840, E-ISSN 1096-4673, Vol. 37, nr 8, s. 602-608Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    This study illuminates adult relatives' experiences of everyday life close to a person with mental ill-health. The study was based on nine diaries and four narrative interviews with relatives of people with mental ill-health. Data were subjected to qualitative content analysis. The participants experienced everyday life as a constant fight, for better and for worse, with psychiatric care. They were fighting for the mentally ill person's right to care; sometimes they felt resigned, but yet they had a confidence in the care. Their mission in life was to sacrifice themselves, meaning that they felt indispensable and became lonely and socially isolated. They considered their mission to last until death set them apart because they were keeping a family secret, and had great worries about the future. We conclude that relatives experience a two-folded stigma in living close to a person with mental ill-health and in becoming lonely and socially isolated.

  • 24.
    Isaksson, Ulf
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Graneheim, Ulla Hällgren
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Åström, Sture
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Female caregivers' experiences of exposure to violence in nursing homes2009Inngår i: Journal of Psychiatric and Mental Health Nursing, ISSN 1351-0126, E-ISSN 1365-2850, Vol. 16, nr 1, s. 46-53Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Although earlier studies have examined caregivers' experiences of exposure to violence, few have investigated female caregivers working in nursing homes with a specific focus on experiences throughout the entire scenario of a violent situation. This study illuminates female caregivers' experiences of being exposed to violence in nursing homes. Twenty caregivers working in three nursing homes located in northern Sweden were asked to narrate about a situation in which they had been exposed to violence. Their narratives were analysed by using qualitative content analysis. We found that the caregivers had preconceived ideas about violent behaviour, that they experienced a loss of control over the situation, and that they then strove to regain control. Experiences such as these may influence caregivers' interactions with residents who display violent behaviour. As a result of violent interactions, caregivers may distance themselves from the residents, an attitude that may decrease the quality of care. There is a risk that violence in nursing homes is accepted and normalized as a part of the job and hence persists.

  • 25.
    Isaksson, Ulf
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Åström, Sture
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Karlsson, Stig
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Physically violent behaviour in dementia care: characteristics of residents and management of violent situations2011Inngår i: Aging & Mental Health, ISSN 1360-7863, E-ISSN 1364-6915, Vol. 15, nr 5, s. 573-579Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Objective: Physically violent behaviour (PVB) is common among residents with dementia and often complicates nursing care. This study aims to explore types of caring situations, resident characteristics related to PVB and professional caregivers' management of PVB.

    Methods: The study included 40 group homes for 309 residents with dementia. Data was gathered by means of structured interviews, the Multi-Dimensional Dementia Assessment Scale and the Geriatric Rating Scale.

    Results: Ninety-eight of the residents (31.7%) were assessed as showing PVB during the preceding week. Three factors were independently associated with PVB: male gender, antipsychotic treatment and decline in orientation. Violent residents were more likely to have impaired speech, difficulties understanding verbal communication and prescribed analgesics and antipsychotics than were non-violent residents. PVB occurred mainly in intimate helping situations and was managed by symptom-oriented approaches, such as distraction, medication and isolation. The working team also held frequent discussions about the residents with PVB.

    Conclusion: This study shows that PVB is frequently displayed among residents in group homes for persons with dementia and the caregivers mainly manage PVB in a symptom-oriented way. To enhance the quality of care for patients with dementia, there is a need for interventions that aim to understand and manage the residents' physical violent behaviour.

  • 26.
    Isaksson, Ulf
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Åström, Sture
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Being flexible and tuning in: professional caregivers' reflections on management of violent behaviour in nursing homes2013Inngår i: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 8, nr 4, s. 290-298Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Aims and objectives: This qualitative, descriptive study aimed to illuminate professional caregivers' reflections on managing residents' violent behaviour in nursing homes.

    Background: Violence towards caregivers in the care of older people is a challenge attracting increasing attention in nursing research. However, studies that focus on the approaches caregivers in nursing homes resort to and how they manage everyday care situations involving threats and violent situations are relatively few.

    Methods: The study was based on 41 interviews in which the caregivers reflected on their own courses of action in violent situations. The interviews were subjected to qualitative content analysis.

    Results: This study showed that caregivers were flexible and in tune with the resident by averting and defusing threatening and violent situations. The caregivers tried to give care in line with the residents' condition, control their own spontaneous reactions and interpret the residents' reactions as communicative signs indicating how they should interact with the resident in the situation. As a last resort, when previous approaches had been unsuccessful, the caregivers took a firm stand, confronted the resident and the violent behaviour more directly, but with respect and with the residents' best interests in mind.

    Conclusions: These findings illuminate how caregivers successfully can manage threatening and violent behavior in nursing homes by being flexible and tuning in with the resident but also by taking a firm stand with the residents' best interests in mind. To be flexible and in tune with residents, it is important to know the residents' personal histories. This may mean involving stakeholders, such as family members and friends, in the care of residents with violent behaviour.

    Implications for practice: We believe that it is important to involve stakeholders in the care of threatening and violent residents in nursing homes as it is important to get information on the residents' personal history. However, there are risks when interpreting residents' behaviour in light of their personal histories as relatives experiences may be subjective and the information may give the caregivers preconceived ideas about the resident.

  • 27.
    Isaksson, Ulf
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Åström, Sture
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    In the eye of the beholder: How female caregivers in nursing homes perceive violence2007Inngår i: 5th European congress on violence in clinical psychiatry., 2007Konferansepaper (Fagfellevurdert)
  • 28.
    Jansson, Leila
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. bDepartment of Health Sciences, University West, Trollhättan, Sweden.
    Nurses' experiences of assessing suicide risk in specialised mental health outpatient care in rural areas2018Inngår i: Issues in Mental Health Nursing, ISSN 0161-2840, E-ISSN 1096-4673, Vol. 39, nr 7, s. 554-560Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    This study describes nurses' experiences of assessing suicide risk in specialised mental health outpatient care in rural areas in Sweden. We used a qualitative, descriptive design based on twelve interviews that were subjected to qualitative content analysis. The results showed that the nurses felt anguish due to a lack of control. They expressed uncertainty and loneliness, and they struggled with ethical issues and organisational challenges. Having the sole responsibility to assess suicide risk can increase a person's emotional vulnerability and moral stress. Consequently, in order to prevent ill health among these nurses, there is a need for a tolerant work climate and an organisation that provides support to its employees.Assessing suicide risk is a demanding task within mental health outpatient care. Further, nurses operating in rural areas have to initiate and conduct assessments on their own, and they are, together with the physician in charge, also held individually responsible for their assessments. Consequently, it is important to describe nurses' experiences of how they deal with questions concerning suicide risk. Their experiences can foster awareness of the responsibility and the ethical standpoints related to assessing suicide risk, can help outline the need for further education and supervision, and can improve support from co-workers and management.

  • 29.
    Johansson, Anneli
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Olsson Ruzin, Helena
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Lindgren, Britt-Marie
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Remaining connected despite separation: former family caregivers’ experiences of aspects that facilitate and hinder the process of relinquishing the care of a person with dementia to a nursing home2014Inngår i: Aging & Mental Health, ISSN 1360-7863, E-ISSN 1364-6915, Vol. 18, nr 8, s. 1029-1036Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    OBJECTIVES: This qualitative study aimed to illuminate former family caregivers’ experiences of aspects that facilitate and hinder the process of relinquishing the care of a person with dementia to a nursing home. METHOD: Ten narrative interviews with former family caregivers were performed and subjected to qualitative content analysis. RESULTS: An overall theme showed that family caregivers were remaining connected to the person with dementia despite separation. They experienced being ‘caught by surprise’ when the placement occurred. Negative expectations of dementia care made the separation more difficult. Lacking adequate information increased feelings of insecurity. Despite these hurdles, family caregivers found meaning in the new situation as they felt that they could remain connected to their loved one. Being recognized as partners in care of the person with dementia after placement was a facilitating aspect. Family caregivers regarded a well-functioning interaction with staff and a supportive social network as reassuring since they facilitated staying in touch. CONCLUSION: Knowledge of the relinquishing process and adequate information about dementia and its progression may help family caregivers better prepare for and adapt to the situation. Family caregivers need to be recognized as partners in care and a welcoming nursing home environment is of utmost importance.

  • 30.
    Jutterström, Lena
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Isaksson, Ulf
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Hörnsten, Åsa
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Ideal versus real conditions for type 2 diabetes care: diabetes specialty nurses’ perspectives2012Inngår i: The Internet Journal of Advanced Nursing Practice, ISSN 1523-6064, Vol. 11, nr 2Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: Since diabetes specialty nurses are the professionals who spend the most time with patients living with diabetes, they probably have the greatest influence on the quality of diabetes care. Therefore, their personal perceptions about what constitutes “good care” in type 2 diabetes care are important to explore.

    Aim: The aim of this study was to describe conditions for “good care” in type 2-diabetes as perceived by diabetes specialty nurses.

    Method: Twenty-one experienced diabetes specialty nurses participated in three focus group interviews. Data were analyzed using qualitative content analysis.

    Findings: The findings are presented in four themes describing diabetes specialty nurses’ perspectives on ideal versus real conditions for type 2 diabetes care: 1) Diabetes counseling built on empowerment versus governance; 2) Diabetes management built on comprehensive versus biomedical views; 3) Diabetes organization built on nurse-led versus physician-led care; and 4) Diabetes policies built on quality versus equality.

    Conclusion: The ideal diabetes care is perceived as complex to achieve. Conflicting paradigms, power relations, and departmentalization of work are influencing the potential to deliver ideal diabetes care and to increase satisfaction among diabetes specialty nurses and patients. The diabetes specialty nurses described themselves as the “hub” of diabetes care, and they perceived conflicts between ideal versus real conditions in type 2 diabetes care. Patient centredness is not a real condition in diabetes care.

  • 31.
    Lindgren, Britt-Marie
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Aminoff, Carina
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Features of every day life in psychiatric inpatient care for self-harming: an observational study of six women2015Inngår i: Issues in Mental Health Nursing, ISSN 0161-2840, E-ISSN 1096-4673, Vol. 36, nr 2, s. 82-88Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    This study aimed to describe the features of everyday life in psychiatric inpatient care as experienced by women who self-harm. Participant observations and informal interviews were conducted with six women and were subjected to qualitative content analysis. The major feature of everyday life in psychiatric inpatient care was ‘being surrounded by disorder’, which consisted of ‘living in a confusing environment, being subject to routines and rules that offer safety but lack consistency’ and ‘waiting both in loneliness and in togetherness’. The nursing staff spent minimal time with the patients and the women turned to each other for support, care and companionship.

  • 32.
    Lindgren, Britt-Marie
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Aström, Sture
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Graneheim, Ulla Hällgren
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Held to ransom: parents of self-harming adults describe their lived experience of professional care and caregivers2010Inngår i: International journal of qualitative studies on health and well-being, ISSN 1748-2631, Vol. 5, nr 3Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    The aim of the study was to discover and describe lived experiences of professional care and caregivers among parents of adults who self-harm. Narrative interviews were conducted with six parents of daughters with self-harming behaviours and analysed using a phenomenological hermeneutic approach. The meanings of the parents' narratives of their lived experiences of professional care and caregivers were interpreted as their being involved in 'limit situations' comparable to hostage dramas. Several meaningful themes contributed to this interpretation: being trapped in a situation with no escape; being in the prisoner's dock; groping in the dark; and finding glimmers of hope. Parents of daughters who were in care because of self-harming often felt obliged to pay an emotional ransom, which included feelings of being accused, being 'broken', being confused, and feeling lost. Moments of peace occurred as welcome breaks offering a short time of rest for the parents. Situations that were understood by the parents and solved in a peaceful way were experienced as a respite and inspired parents with hope for their daughters' recovery.

  • 33.
    Lindgren, Britt-Marie
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Eklund, Margita
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Melin, Ylva
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Graneheim, Ulla Hällgren
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    From Resistance to Existence-Experiences of Medication-Assisted Treatment as Disclosed by People with Opioid Dependence2015Inngår i: Issues in Mental Health Nursing, ISSN 0161-2840, E-ISSN 1096-4673, Vol. 36, nr 12, s. 963-970Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    This study aimed to describe the lived experiences of participating in a medication-assisted treatment as disclosed by individuals with opioid dependence. Eleven narrative interviews were conducted and subjected to qualitative content analysis. The experiences of participating in the programme were described as a process from resistance to existence. The participants seized the chance to claim a life lived with dignity, struggled with hidden challenges, and eventually were freed from their pasts and were grateful for an existence with dignity. The recovery process was a long-term commitment and participants asked for a more individual and flexible process based on personal needs and values.

  • 34.
    Lindgren, Britt-Marie
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Ringnér, Anders
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Umeå universitet, Medicinska fakulteten, Institutionen för klinisk vetenskap, Pediatrik.
    Molin, Jenny
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Department of Health Sciences, University West,Trollhättan, Sweden.
    Patients' experiences of isolation in psychiatric inpatient care: insights from a meta-ethnographic study2019Inngår i: International Journal of Mental Health Nursing, ISSN 1445-8330, E-ISSN 1447-0349, Vol. 28, nr 1, s. 7-21Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Historically, people with mental ill-health have been isolated from society. Although mental health care has moved from closed to more open forms of care, in many societies care is still provided in locked wards, and people with mental ill-health are sometimes secluded from their fellow patients, families, friends, and visitors. The aim of this study was to illuminate patients' experiences of isolation in psychiatric inpatient care. A systematic review of qualitative research was conducted, and the key findings were subjected to meta-ethnographic synthesis. The findings were twofold: 'being admitted to prison' and 'having access to shelter'. The experience of isolated care as prison-like symbolizes patients' longing for freedom and feeling restricted and limited by rules, stripped of rights, abandoned, controlled, powerless, and unsupported. In contrast, the experience of isolation as shelter symbolizes safety and the opportunity to regain control over one's own situation. A stigmatizing public view holds that people with mental ill-health are dangerous and unpredictable and, therefore, unsafe to themselves and others. Being placed in isolation because these fears contribute to self-stigma among patients. Promoting a sheltered experience in which isolation is used with respect for patients and the reasons are made explicit may encourage recovery. A shift in emphasis in ward culture from observation to engagement is needed to reduce blame, shift patient experiences from prison to shelter, and to support autonomy as a therapeutic intervention.

  • 35.
    Lindgren, Britt-Marie
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Sundbaum, Johanna
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Eriksson, Maria
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Looking at the world through a frosted window: experiences of loneliness among people with mental ill-health2014Inngår i: Journal of Psychiatric and Mental Health Nursing, ISSN 1351-0126, E-ISSN 1365-2850, Vol. 21, nr 2, s. 114-120Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Mental ill-health is reported to be of major concern in public health. Persons suffering from mental ill-health are a vulnerable group, and loneliness influences the perception of physical, social, and emotional well-being. However, there are few studies exploring lived experiences of loneliness among people with mental ill-health. This qualitative study aimed to illuminate experiences of loneliness among people with mental ill-health. Five individual, informal conversational interviews were performed and subjected to qualitative content analysis. The main findings showed that experiences of loneliness could be metaphorically described as looking at the world through a frosted window. The experiences of loneliness were multifaceted and altering as well as emotionally and socially excluding. The findings are discussed in relation to Tillich dimensions of loneliness: loneliness as a painful dimension of being alone, and solitude as the enriching dimension of being alone. People suffering from mental ill-health carry a twofolded stigma. They feel socially undesirable because of their mental ill-health, and the social perceptions of lonely people are generally unfavourable. We believe that mental health nurses can support the developing and creative dimension of loneliness through a confirming approach, where people with mental ill-health feel seen, heard, and respected as human beings.

  • 36.
    Lindgren, Britt-Marie
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Öster, Inger
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Åström, Sture
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    'They don't understand…you cut yourself in order to live.': Interpretative repertoires jointly constructing interactions between adult women who self-harm and professional caregivers2011Inngår i: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 6, nr 3, s. 7254-Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    The aim of the study was to illuminate interpretative repertoires that jointly construct the interaction between adult women who self-harm and professional caregivers in psychiatric inpatient care. Participant observations and informal interviews were conducted among six women who self-harm and their professional caregivers in two psychiatric inpatient wards, and analysed using the concept of interpretative repertoires from the discipline of discursive psychology. The analysis revealed four interpretative repertoires that jointly constructed the interaction. The professional caregivers used a "fostering repertoire" and a "supportive repertoire" and the women who self-harmed used a "victim repertoire" and an "expert repertoire." The women and the caregivers were positioned and positioned themselves and people around them within and among these interpretative repertoires to make sense of their experiences of the interaction. It was necessary to consider each woman's own life chances and knowledge about herself and her needs. The participants made it clear that it was essential for them to be met with respect as individuals. Professional caregivers need to work in partnership with individuals who self-harm-experts by profession collaborating with experts by experience. Caregivers need to look beyond behavioural symptoms and recognise each individual's possibilities for agency.

  • 37.
    Lundman, Berit
    et al.
    Umeå universitet, Medicinsk fakultet, Omvårdnad.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinsk fakultet, Omvårdnad.
    Kvalitativ innehållsanalys.2008Inngår i: Tillämpad kvalitativ forskning inom hälso- och sjukvård., Studentlitteratur Lund , 2008Kapittel i bok, del av antologi (Annet (populærvitenskap, debatt, mm))
  • 38.
    Lundström, Mats
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Antonsson, Helena
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Karlsson, Stig
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Use of physical restraints with people with intellectual disabilities living in Sweden's group homes2011Inngår i: Journal of Policy and Practice in Intellectual Disabilities, ISSN 1741-1122, E-ISSN 1741-1130, Vol. 8, nr 1, s. 36-41Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    People with intellectual disabilities (ID) often exhibit physical and communicative difficulties as well as challenging behaviors. Physical restraints are one method used to manage challenging behaviors and promote physical safety for people with ID, their fellow residents, and professional carers. However, there is a lack of data regarding the practice of employing physical restraints in Swedish group homes for people with ID. The aim was to investigate the prevalence of physical restraint use in group homes for people with ID, and to identify the characteristics of individuals subjected to these restraints. The study had a cross-sectional design and included 556 people with ID, aged 16–90 years, living in 118 group homes. Physical restraint use and residents' characteristics were surveyed with a questionnaire. Of the 556 residents studied, 99 (17.8%) had been subjected to physical restraint over the previous week. Of these, 99.2% were subjected to more than one type of restraint. The most commonly used type of physical restraint was a belt (73.7%). Using logistic regression analysis, the independent risk factors strongly associated with being physically restrained were inability to walk independently, impaired speech, screaming and shouting continuously, epileptic seizures, and spasticity. Despite the absence of legal authority for physical restraint use in group homes for people with ID, physical restraints are frequently used in Sweden. Both physical impairments and behavioral symptoms are significantly associated with physical restraint use.

  • 39.
    Lundström, Mats
    et al.
    Umeå universitet, Medicinsk fakultet, Omvårdnad.
    Åström, Sture
    Umeå universitet, Medicinsk fakultet, Omvårdnad.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinsk fakultet, Omvårdnad.
    Caregivers' experiences of exposure to violence in services for people with learning disabilities.2007Inngår i: Journal of Psychiatric and Mental Health Nursing, ISSN 1351-0126, Vol. 14, nr 4, s. 338-45Artikkel i tidsskrift (Fagfellevurdert)
  • 40.
    Lämås, Kristina
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Graneheim, Ulla H.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Jacobsson, Catrine
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Experiences of abdominal massage for constipation2012Inngår i: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 21, nr 5-6, s. 757-765Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Aim. This study aims to illuminate participants experiences of receiving abdominal massage for constipation. Background. Abdominal massage has been found to decrease the severity of constipation and abdominal pain, but little is known about how patients experience receiving abdominal massage. Design. The present study is a qualitative descriptive study, based on individual interviews. Method. Nine adults receiving abdominal massage for constipation were invited to participate. Semi-structured interviews were conducted in Sweden between 2005-2007. The interviews were transcribed and subjected to qualitative content analysis. Results. Four themes were formulated: 'being on one's guard', 'becoming embraced by safe hands', 'being touched physically and emotionally' and 'feeling vulnerable'. The participants reported that they were on guard, i. e. they were sceptical about whether or not abdominal massage was effective and suitable. However, as the massage sessions continued, they found the massage pleasant and began to feel embraced and in safe hands. They described how the abdominal massage made them feel as 'being touched physically and emotionally' and their bowel habits were improved. Along with the improvements, their agony was gone and they felt relieved. However, they considered their new condition fragile and they felt vulnerable to relapse. Conclusions. Abdominal massage was experienced as pleasurable, and after treatment, the participants felt more comfortable with their bowel function. Participants described abdominal massage as affecting the whole person. Relevance to clinical practice. Abdominal massage has been shown to be an effective intervention for constipation. A crucial aspect is that nurses need to be sensitive and respect the intimacy associated with the abdomen.

  • 41.
    Lövheim, Hugo
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för samhällsmedicin och rehabilitering, Geriatrik.
    Graneheim, Ulla H.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Jonsén, Elisabeth
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Strandberg, Gunilla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Lundman, Berit
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Changes in sense of coherence in old age: a 5-year follow-up of the Umeå 85+ study2013Inngår i: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 27, nr 1, s. 13-19Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Objective: This study aims to describe the changes in sense of coherence (SOC) over time and relate these changes to negative life events among very old people. Design: Prospective and longitudinal study. Subjects:  190 old women and men participated, of whom 56 could be included in the 5-year follow-up. Methods: The mean SOC score from the first and second data collection were compared using a paired sample t-test. The relationship between the index of negative life events and the changes on SOC score between the two data collections was investigate using linear regression. Main outcome measures: Antonovsky's SOC scale and an index of negative life events including severe physical and mental diseases, various losses as losses of spouses, cognitive and functional ability. Result:  For the whole group of subjects (n = 56), the SOC scores was higher (70.1 vs. 73.7, p = 0.029) at the second point measure. The most common negative life events at follow-up were loss of independence in activities in daily living and decrease in cognitive function. A significant correlation between the index of negative life events and changes in SOC over 5 years was found (p = 0.025). The more negative life events, the more decrease in SOC. Conclusion: We concluded that there is a risk of decreased SOC and thereby quality of life when negative life events accumulate among very old people. Nursing interventions might play an important role for maintaining and perhaps strengthening SOC among old people exposed to negative life events.

  • 42.
    Molin, Jenny
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Lindgren, Britt-Marie
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Quality of interactions influences everyday life in psychiatric inpatient care: patients' perspectives2016Inngår i: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 11, nr 1, artikkel-id 29897Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Everyday life consists of daily activities that are taken for granted. It forms the foundation for human efforts and contains elements of both comfort and boredom. Because everyday life escapes no one, life in a psychiatric ward will become ordinary while staying there. This study aims to explore everyday life in psychiatric inpatient care based on patients' experiences. We individually interviewed 16 participants with experiences of psychiatric inpatient care and analysed the data in accordance with the methods of grounded theory. Data collection and analysis continued in parallel in accordance with the method. Our results showed that everyday life is linked to the core category quality of interactions influences everyday life, and three constructed categories — staff makes the difference, looking for shelter in a stigmatizing environment, and facing a confusing care content — were related to the core category. Our results highlight the importance of ordinary relationships between staff and patients in psychiatric inpatient care. These results can be used to develop nursing interventions to improve psychiatric inpatient care and might also be used as a basis for reflective dialogues among staff.

  • 43.
    Molin, Jenny
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Ringnér, Anders
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Lindgren, Britt-Marie
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    From ideals to resignation: interprofessional teams perspectives on everyday life processes in psychiatric inpatient care2016Inngår i: Journal of Psychiatric and Mental Health Nursing, ISSN 1351-0126, E-ISSN 1365-2850, Vol. 23, nr 9-10, s. 595-604Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Introduction: Patients and ward staff describe psychiatric inpatient care as demanding, characterized by unpredictable events, yet research on interprofessional teams perspectives of everyday life processes in psychiatric inpatient care lacks. Aim: This study aims to explore everyday life processes in psychiatric inpatient care, as reported by staff in interprofessional teams. Method: A grounded theory design was used and 36 participants were interviewed. Results: The analysis resulted in a process-oriented core category From ideals to resignation. Related to this core category were three further categories: Knowing where to go, Walking a path of obstacles and Shifting focus from the patient's best interests to self-survival. The staff had ideals about care and collaboration, but a poor environment, power asymmetry, lacking structure and demands of managing chaos meant that they appeared to resign from putting their ideals into practice. Discussion: Different professions in general describe the same obstacles in everyday life on the wards but there are also profession-specific perspectives on distancing and feelings of abandonment. To our knowledge similar findings have not been reported in the international evidence. Implications: In order to support interprofessional teams to work according to their ideals, interventions such as Protected Engagement Time and reflective dialogues within the teams are suggested.

  • 44.
    Molin, Jenny
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Ringnér, Anders
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Lindgren, Britt-Marie
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Patient experiences of taking part in Time Together – a nursing intervention in psychiatric inpatient careManuskript (preprint) (Annet vitenskapelig)
  • 45.
    Molin, Jenny
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Ringnér, Anders
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Lindgren, Britt-Marie
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Patients' experiences of taking part in Time Together - A nursing intervention in psychiatric inpatient care2019Inngår i: International Journal of Mental Health Nursing, ISSN 1445-8330, E-ISSN 1447-0349, Vol. 28, nr 2, s. 551-559Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    This qualitative study aimed to illuminate patients' experiences of taking part in the nursing intervention Time Together. The data were drawn from 11 individual semi-structured interviews with patients and analysed with qualitative content analysis using an inductive approach. The results show that patients taking part in Time Together felt confirmed and participated on equal terms; thus, they experienced being seen as humans among other humans. Time Together offered patients a break, and they felt strengthened, which contributed to their hopes for recovery. Furthermore, when Time Together was absent patients felt disconfirmed, which fostered feelings of distance from staff. The results support the effectiveness of the intervention, indicating that Time Together may be a tool to facilitate patients' personal recovery. However, the success of the intervention depends on staff compliance with the predetermined structure of the intervention in combination with engagement.

  • 46.
    Molin, Jenny
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Lindgren, Britt-Marie
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Graneheim, Ulla Hällgren
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Ringnér, Anders
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Time Together: a nursing intervention in psychiatric inpatient care : feasibility and effects2018Inngår i: International Journal of Mental Health Nursing, ISSN 1445-8330, E-ISSN 1447-0349, Vol. 27, nr 6, s. 1698-1708Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    The facilitation of quality time between patients and staff in psychiatric inpatient care is useful to promote recovery and reduce stress experienced by staff. However, interventions are reported to be complex to implement and are poorly described in the literature. This multisite study aimed to evaluate the feasibility and effects of the nursing intervention Time Together, using mixed methods. Data consisted of notes from participant observations and logs to evaluate feasibility, and questionnaires to evaluate effects. The primary outcome for patients was quality of interactions, and for staff, it was perceived stress. The secondary outcome for patients was anxiety and depression symptom levels, and for staff, it was stress of conscience. Data were analysed using visual analysis, percentage of nonoverlapping data, and qualitative content analysis. The results showed that Time Together was a feasible intervention, but measurements showed no effects on the two patient outcomes: quality of interactions and anxiety and depressive symptoms and, questionable effects on perceived stress and stress of conscience among staff. Shared responsibility, a friendly approach, and a predictable structure enabled Time Together, while a distant approach and an unpredictable structure hindered the intervention. In conclusion, the intervention proved to be feasible with potential to enable quality interactions between patients and staff using the enabling factors as supportive components. It also had some effects on perceived stress and stress of conscience among staff. Further evaluation is needed to build on the evidence for the intervention.

  • 47.
    Molin, Jenny
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Lindgren, Britt-Marie
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Ringnér, Anders
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Umeå universitet, Medicinska fakulteten, Institutionen för klinisk vetenskap, Pediatrik.
    Does 'Time Together' increase quality of interaction and decrease stress?: A study protocol of a multisite nursing intervention in psychiatric inpatient care, using a mixed method approach2017Inngår i: BMJ Open, ISSN 2044-6055, E-ISSN 2044-6055, Vol. 7, nr 8, artikkel-id e015677Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Introduction: Despite the long-known significance of the nurse–patient relationship, research in psychiatric inpatient care still reports unfulfilled expectations of, and difficulties in, interactions and relationships between patients and staff. Interventions that create structures to allow quality interactions between patients and staff are needed to solve these problems. The aim of this project is to test effects of the nursing intervention Time Together and to evaluate the intervention process.

    Methods and analysis: This is a multisite study with a single-system experimental design using frequent measures. The primary outcomes are quality interactions for patients and perceived stress for staff. Secondary outcomes are levels of symptoms of anxiety and depression for patients and stress of conscience for staff. A process evaluation is performed to describe contextual factors and experiences. Data are collected using questionnaires, participant observations and semistructured interviews. For analysis of quantitative data, both visual and statistical methods will be used. Qualitative data will be analysed using qualitative content analysis.

    Ethics and dissemination: Ethical approval was granted by the Ethical Review Board in the region (Dnr 2016/339-31). The findings will contribute to the development of nursing interventions in general, but more specifically to the development of the intervention. This is relevant both nationally and internationally as similar interventions are needed but sparse. The findings will be disseminated through conference presentations and peer-reviewed publications.

  • 48. Ozanne, A.
    et al.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Ekstedt, G.
    Malmgren, K.
    Patient experiences of epilepsy surgery - a longitudinal qualitative study2014Inngår i: Epilepsia, ISSN 0013-9580, E-ISSN 1528-1167, Vol. 55, nr Supplement 2, s. 174-174Artikkel i tidsskrift (Annet vitenskapelig)
  • 49. Ozanne, A.
    et al.
    Johansson, D.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Department of Health Sciences, University West, Trollhättan, Sweden.
    Malmgren, K.
    Bergquist, F.
    Murphy, M. Alt
    Wearables in epilepsy and Parkinson's disease: A focus group study2018Inngår i: Acta Neurologica Scandinavica, ISSN 0001-6314, E-ISSN 1600-0404, Vol. 137, nr 2, s. 188-194Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Objectives: Wearable sensors that measure movement and physiological variables are attractive for clinical evaluation of neurological diseases such as epilepsy and Parkinson's disease (PD). The aim of this study was to explore perceptions regarding the use of wearable technology in disease monitoring and management as reported by individuals with epilepsy and Parkinson's disease as well as health professionals working with these patient groups.

    Materials and Methods: Six patient groups (n=25) and two groups with health professionals (n=15) participated in this qualitative, descriptive study with focus group interviews. A manifest qualitative content analysis was used.

    Results: Four categories and nine subcategories emerged from the analysis. Participants saw possible benefits for improved treatment effect and valued this benefit more than possible inconvenience of wearing the sensors. Discrete design and simplicity were considered as facilitators for improved usability. They emphasized the importance of interactive information between patients and health professionals. However, they were concerned about unclear information and inconclusive recordings and some fears about personal integrity were at odds with the expectations on interactivity.

    Conclusions: Patients need to feel well informed and find an added value in using wearables. Wearables need to be user-friendly, have an attractive design, and show clinical efficacy in improving disease management. Variations in perceptions regarding integrity, benefits, and effectiveness of monitoring indicate possible conflicts of expectations among participants. The engagement of end users, patients, and health professionals, in the design and implementation process, is crucial for the development of wearable devices that enhance and facilitate neurological rehabilitation practice.

  • 50. Ozanne, Anneli
    et al.
    Graneheim, Ulla H.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Department of Health Sciences, University West, Trollhättan, Sweden.
    Understanding the incomprehensible: patients' and spouses' experiences of comprehensibility before, at and after diagnosis of amyotrophic lateral sclerosis2018Inngår i: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 32, nr 2, s. 663-671Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: Previous studies have examined manageability and meaningfulness in amyotrophic lateral sclerosis (ALS), but there is a lack of studies examining the comprehensibility of ALS among patients and their spouses.

    Aim: This qualitative retrospective study aimed to illuminate patients' and spouses' experiences of comprehensibility in ALS from a long-term perspective, when symptoms appeared before diagnosis, and when the diagnosis was given and in life after diagnosis.

    Methods: Individual semi-structured interviews with 14 patients and 13 spouses were performed. The transcribed interviews were subjected to qualitative content analysis.

    Findings:Through the whole disease process, patients and spouses feared the unknown regardless of whether they comprehended the disease or not. They described that they before diagnosis felt uncertainty. It was problematic to comprehend what was wrong and what the deterioration implied. At the diagnosis, they described feelings of losing their foothold. Long-term after diagnosis, they still lived in fear and looked for reasons why they were afflicted.

    Conclusions: Findings of similar experiences in comprehensibility between patients and spouses strengthen the importance of support and information to both parties. Since they hovered between comprehensibility and incomprehensibility during the whole disease process, it is important that their questions, fears and worries are met, from the first visit at hospital and through the whole process. Multiprofessional teams, such as ALS teams and palliative teams can from a holistic perspective increase the possibility of meeting their needs in their unique situation.

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