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  • 1.
    Andersson, Anna
    et al.
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - grundnivå.
    Hällgren Graneheim, Ulla
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. Department of Nursing, Umeå University, Umeå (SWE).
    Skyvell Nilsson, Maria
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå.
    Newly-graduated nurses´ work-integrated learning: A qualitative study from an educational and occupational perspective2022Inngår i: Nurse Education in Practice, ISSN 1471-5953, E-ISSN 1873-5223, Vol. 59Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Aim: The aim of this study was to describe newly graduated nurses´(NGNs´) experience of work-integrated learning (WIL), from an educational and occupational perspective.

    Background: NGNs often find themselves unprepared to meet occupational demands on their competence on entering working life, and express difficulties integrating educational theory into a practical context. Qualitative and effective WIL becomes particularly important for NGNs to develop the competence required to handle the transition from education to working life.

    Design: This is a qualitative, descriptive study with an inductive approach.

    Methods: Seven focus-group discussions were performed and subjected to qualitative content analysis.

    Results: The results revealed that WIL for NGNs includes personal mastering of several professional roles: a self-directed and collaborative learning role, a relational nursing role, and a transition from a student role to a collegial role. Furthermore, WIL entails adapting to organisational requirements, including development of contextual workplace knowledge and understanding; striving for confidence in medical-technical performance; and developing an experience-based understanding of clinical situations.

    Conclusion: The results reveal that WIL is complex, encompassing adaptation to roles and personal capabilities that increase new graduates´competence and preparation for work. In addition, WIL requires personal commitment to one’s own learning as well as organisational and social support. 

    Fulltekst (pdf)
    Elsevier
  • 2.
    Antonsson, Helena
    et al.
    University of Umeå , Department of Nursing , Umeå , Sweden.
    Hällgren Graneheim, Ulla
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. University of Umeå , Department of Nursing , Umeå , Sweden.
    Isaksson, Ulf
    University of Umeå , Department of Nursing , Umeå , Sweden.
    Åström, Sture
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. University of Umeå , Department of Nursing , Umeå , Sweden.
    Lundström, Mats O
    University of Umeå , Department of Nursing , Umeå , Swede.
    Evaluation of a Web-Based Training Program for Professional Carers Working With People With Learning Disabilities and Challenging Behavior: A Pilot Study with SSED-Design.2016Inngår 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.
    Hällgren Graneheim, Ulla
    et al.
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå.
    Lindgren, Britt-Marie
    Umeå University, Department of Nursing, Umeå, Sweden.
    Lundman, Berit
    Umeå University, Department of Nursing, Umeå, Sweden.
    Methodological challenges in qualitative content analysis: A discussion paper.2017Inngår 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.

  • 4.
    Hällgren Graneheim, Ulla
    et al.
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå.
    Åström, Sture
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå.
    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.

  • 5.
    Jansson, Leila
    et al.
    Umeå University, Department of Nursing , Umeå , Sweden..
    Hällgren Graneheim, Ulla
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå.
    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.

  • 6.
    Lindgren, Britt-Marie
    et al.
    Umeå University, Department of Nursing, SE-90187, Umeå, Sweden.
    Lundman, Berit
    Umeå University, Department of Nursing, SE-90187, Umeå, Sweden.
    Hällgren Graneheim, Ulla
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå.
    Abstraction and interpretation during the qualitative content analysis process2020Inngår i: International Journal of Nursing Studies, ISSN 0020-7489, E-ISSN 1873-491X, Vol. 108, artikkel-id 103632Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Qualitative content analysis and other 'standardised' methods are sometimes considered to be technical tools used for basic, superficial, and simple sorting of text, and their results lack depth, scientific rigour, and evidence. To strengthen the trustworthiness of qualitative content analyses, we focus on abstraction and interpretation during the analytic process. To our knowledge, descriptions of these concepts are sparse; this paper therefore aims to elaborate on and exemplify the distinction and relation between abstraction and interpretation during the different phases of the process of qualitative content analysis. We address the relations between abstraction and interpretation when selecting, condensing, and coding meaning units and creating categories and themes on various levels. The examples used are based on our experiences of teaching and supervising students at various levels. We also highlight the phases of de-contextualisation and re-contextualisation in describing the analytic process. We argue that qualitative content analysis can be both descriptive and interpretative. When the data allow interpretations of the latent content, qualitative content analysis reveals both depth and meaning in participants' utterances.

  • 7.
    Lindgren, Britt-Marie
    et al.
    Umeå University, Department of Nursing, Umeå, Sweden.
    Molin, Jenny
    Umeå University, Department of Nursing, Umeå, Sweden; Umeå University, Department of Clinical Sciences, Division of Psychiatry, Umeå, Sweden.
    Hällgren Graneheim, Ulla
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. Umeå University, Department of Clinical Sciences, Division of Psychiatry, Umeå, Sweden.
    Balancing between a Person-Centred and a Common Staff Approach: Nursing Staff's Experiences of Good Nursing Practice for Patients Who Self-Harm2021Inngår i: Issues in Mental Health Nursing, ISSN 0161-2840, E-ISSN 1096-4673, Vol. 42, nr 6, s. 564-572Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    The aim of this study was to describe nursing staff's experiences of good nursing practice in psychiatric in-patient care for patients with self-harming behavior. The participants were nine nurses and eight nursing assistants working in two in-patient wards in general psychiatry. Four focus group discussions were held and subjected to qualitative content analysis. The findings showed that good nursing practice balanced a person-centred approach with a common staff approach, allowing people who self-harm and staff to share responsibility for structuring everyday life, keeping to the plan, communicating decisions, and finding individual opportunities for relief. Reflective discussions among the staff concerning prejudice, emotional stress, lack of resources, and shortcomings in care planning could also prevent a stigmatizing culture and organizational deficiencies, which would be beneficial for both the people who self-harm and the staff.

  • 8.
    Lindgren, Britt-Marie
    et al.
    Umeå University, Department of Nursing, Umeå, Sweden.
    Ringnér, Anders
    Umeå University, Department of Nursing, Umeå, Sweden. Umeå University, Department of Paediatrics, Umeå, Sweden..
    Molin, Jenny
    Umeå University, Department of Nursing, Umeå, Sweden.
    Hällgren Graneheim, Ulla
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. Umeå University, Department of Nursing, Umeå, Sweden.
    Patients' experiences of isolation in psychiatric inpatient care: Insights from a meta-ethnographic study.2019Inngår 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.

  • 9.
    Ljunggren, Sofia
    et al.
    Department of Clinical Neuroscience, Institute of Neuroscience and Physiology, Sahlgrenska Academy at Gothenburg University, Gothenburg (SWE) and Department of Neurology, Sahlgrenska University Hospital, Gothenburg (SWE).
    Winblad, Stefan
    Department of Psychology, Gothenburg University, Gothenburg (SWE).
    Hällgren Graneheim, Ulla
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. Department of Nursing, Umeå University, Umeå (SWE).
    Malmgren, Kristina
    Department of Clinical Neuroscience, Institute of Neuroscience and Physiology, Sahlgrenska Academy at Gothenburg University, Gothenburg (SWE) and Department of Neurology, Sahlgrenska University Hospital, Gothenburg (SWE) .
    Ozanne, Anneli
    Department of Neurology, Sahlgrenska University Hospital, Gothenburg (SWE) and Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg (SWE) .
    Experiences of emotional and psychosocial functioning after frontal lobe resection for epilepsy.2021Inngår i: Epilepsy & Behavior, ISSN 1525-5050, E-ISSN 1525-5069, Vol. 121, nr Pt A, artikkel-id 108077Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    PURPOSE: Frontal lobe resection (FLR) is the second most common epilepsy surgery procedure in adults. Few studies address neuropsychological consequences after FLR. The aim of this study was to explore patients' and relatives' experiences of cognitive, emotional and social cognitive functioning after frontal lobe epilepsy surgery.

    METHODS: Semi-structured interviews were held with 14 patients having gone through FLR as adults during the years 2000-2016 and 12 of their relatives. Interviews were audio-recorded, transcribed and analyzed with inductive qualitative content analysis.

    RESULTS: Positive as well as negative consequences were described both by patients and relatives. Feelings of relief and an increased capacity to experience emotions of well-being were mainly experienced as related to seizure freedom. A newfound autonomy and a more grown-up identity as opposed to a self-image based on epilepsy was also highlighted. However, results also showed that even for seizure free patients, FLR could give rise to negative experiences, the most prominent of which were mental fatigue, lowered mood and social withdrawal. Coping strategies included planning ahead to avoid mental exhaustion. Over all, respondents considered that the epilepsy surgery had been a risk well worth taking and that positive consequences outweighed the negative ones.

    CONCLUSIONS: This study shows a range of positive as well as negative outcomes after FLR for epilepsy. The findings indicate that lowered mood and mental fatigue could affect the life situation in a negative way, regardless of seizure outcome. This is important to consider in the preoperative counselling of patients and their families, as well as in the postsurgical follow-up. It is also crucial that the epilepsy surgery team has the possibility to offer rehabilitation and support to families regarding these aspects after surgery.

    Fulltekst (pdf)
    Elsevier OpenAccess
  • 10.
    Löyttynen, Jenny
    et al.
    Department of Nursing, Umeå University, Umeå (SWE).
    Hällgren Graneheim, Ulla
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå.
    Hörnsten, Åsa
    Department of Nursing, Umeå University, Umeå (SWE).
    District Nurses' Experiences of Practice in Caring for People with Mental Ill-Health in Swedish Primary Care.2023Inngår i: Issues in Mental Health Nursing, ISSN 0161-2840, E-ISSN 1096-4673, Vol. 44, nr 5, s. 396-405Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Mental ill-health is one of the greatest public health challenges in Sweden, and it is estimated that every third person seeking primary care in the country suffers from mental ill-health. Without proper treatment at an early stage, mental ill-health may lead to long-term illness and have a significant impact on functional ability. As district nurses are specialists in public health nursing, they have been pointed out as having a key role in the prevention and management of mental ill-health. The aim was to explore district nurses' practice in caring for people with mental ill-health within primary health care. Individual semi-structured interviews were conducted with district nurses (n = 18) and the transcribed text was subjected to qualitative content analysis. The result was formulated as several subthemes, eventually developed into three themes: Practicing within an organisation where traditional attitudes are impediments, Perceiving mental healthcare as not being an obvious part of district nursing, Working as fellow human beings rather than "professionals". The findings indicate that district nurses feel uncertainty in their practice in this area. Working independently with mental ill-health was not always considered socially acceptable among district nurses. Despite these challenges they tried to remain involved without becoming emotionally overwhelmed. They also strived to meet the needs of these patients with 'small things', that could be effective and a part of recovery-oriented practice, even if they might be defined as unprofessional, and their efficacy negated.

    Fulltekst (pdf)
    fulltext
  • 11.
    Molin, Jenny
    et al.
    Department of Nursing, Umeå University, Umeå, Sweden;b Department of Clinical Science, Division of Psychiatry, Umeå University, Umeå, (SWE).
    Hällgren Graneheim, Ulla
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. Department of Nursing, Umeå University, Umeå, (SWE).
    Participation, Confirmation and Challenges: How Nursing Staff Experience the Daily Conversations Nursing Intervention in Psychiatric Inpatient Care2022Inngår i: Issues in Mental Health Nursing, ISSN 0161-2840, E-ISSN 1096-4673, Vol. 43, nr 11, s. 1056-1063Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Mental health nursing focuses on patients’ experiences, accessed through narratives developed in conversations with nursing staff. This study explored nursing staff’s experiences of using the nursing intervention Daily Conversations in psychiatric inpatient care. We used a qualitative questionnaire and received 103 responses. Qualitative content analysis of the data resulted in three themes describing both advantages and obstacles with Daily Conversations: Promotes participation, Contributes to confirming relations and Challenges previous structures. To illuminate the significance of confirming acts and make nursing staff more comfortable, the intervention could benefit from being more flexible and allowing in its structure. For the intervention to succeed, nursing staff need training in conversation, thorough preparation, shared reflections on values in mental health nursing, and structures to maintain its implementation and use.

    Fulltekst (pdf)
    fulltext
  • 12.
    Molin, Jenny
    et al.
    Umeå University, Department of Nursing, Umeå.
    Hällgren Graneheim, Ulla
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. Umeå University, Department of Nursing, Umeå.
    Ringnér, Anders
    Umeå University, Department of Nursing, Umeå; Department of Pediatrics, Umeå University Hospital, Umeå, Sweden.
    Lindgren, Britt-Marie
    Umeå University, Department of Nursing, Umeå.
    Time Together as an arena for mental health nursing: staff experiences of introducing and participating in a nursing intervention in psychiatric inpatient care2020Inngår i: International Journal of Mental Health Nursing, ISSN 1445-8330, E-ISSN 1447-0349, Vol. 29, nr 6, s. 1192-1201Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    A lack of meaningful activities for people with mental ill health admitted to psychiatric inpatient care has been related to feelings of boredom and 'doing nothing' and is not in line with recovery-oriented care. Staff in psychiatric inpatient care report having limited time, ambiguous responsibilities, and insufficient support that counteracts their ideals of good nursing care and puts them at risk for high levels of stress and stress of conscience. Research highlights a need for interactions between patients and staff, but few nursing interventions with such a focus are described in the literature. This qualitative study aimed to illuminate staff experiences of introducing and participating in the nursing intervention Time Together, via qualitative content analysis of 17 individual semi-structured interviews with nursing staff in psychiatric inpatient care. The results show that these staff members experienced Time Together as an arena for mental health nursing. They prepared for the introduction of the intervention by laying a framework for success. Although the actual implementation led to them feeling burdened, they found that Time Together fostered relationships between patients and staff. For successful implementation, mental health nurses need to advocate the intervention. As Time Together constitutes an arena for mental health nursing, play and conversations based on reciprocity and equality can contribute to patients' recovery.

  • 13.
    Molin, Jenny
    et al.
    Umeå University, Department of Nursing, Umeå, Sweden; Umeå University, Division of Psychiatry, Department of Clinical Sciences, Umeå, Sweden.
    Vestberg, Maria
    Umeå University, Department of Nursing, Umeå, Sweden.
    Lövgren, Anna
    Umeå University, Department of Odontology, Umeå, Sweden.
    Ringnér, Anders
    Umeå University, Department of Nursing, Umeå, Sweden.
    Hällgren Graneheim, Ulla
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. Umeå University, Department of Nursing, Umeå, Sweden.
    Lindgren, Britt-Marie
    Umeå University, Department of Nursing, Umeå, Sweden.
    Rather a Competent Practitioner than a Compassionate Healer: Patients' Satisfaction with Interactions in Psychiatric Inpatient Care.2021Inngår i: Issues in Mental Health Nursing, ISSN 0161-2840, E-ISSN 1096-4673, Vol. 42, nr 6, s. 549-554Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Interactions with staff are important aspects in patients' experiences of psychiatric inpatient care (PIC). This study aimed to evaluate patients' satisfaction with their interactions with PIC staff and whether sociodemographic factors, depression and anxiety symptoms were associated with their perceptions of these interactions. In this cross-sectional study, we collected data from 84 patients receiving inpatient care in three psychiatric settings in Sweden. The patients' perceptions of interactions with staff and self-reported degrees of depression and anxiety were evaluated through questionnaires. Overall, patients were satisfied with the patient-staff interaction. However, significantly higher scores were related to staffs' practical competence than to their compassion. Older patients reported significantly more satisfaction than younger patients with their most recent meeting with staff. Tailored nursing interventions may improve staff's compassionate capacity. Further research in larger samples is needed to improve our understanding of the factors associated with how patients perceive their interactions with staff.

  • 14.
    Ozanne, Anneli
    et al.
    University of Gothenburg, Institute of Health and Care Sciences, Sahlgrenska Academy, .
    Hällgren Graneheim, Ulla
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå.
    Understanding the incomprehensible: patients' and spouses' experiences of comprehensibility before, at and after diagnosis of amyotrophic lateral sclerosis.2018Inngår 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.

  • 15.
    Ozanne, Anneli
    et al.
    University of Gothenburg, Institute of Health and Care Sciences, Sahlgrenska Academy, Gothenburg, Sweden.
    Hällgren Graneheim, Ulla
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för vårdvetenskap på avancerad nivå. Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. Umeå University, Department of Nursing, SE-901 87 Umeå, Sweden.
    Ekstedt, Gerd
    Sahlgrenska University Hospital, Gothenburg, Department of Neurology, Sweden.
    Malmgren, Kristina
    University of Gothenburg, Department of Clinical Neuroscience and Rehabilitation, Institute of Neuroscience and Physiology, Sahlgrenska Academy, Gothenburg, Sweden.
    Patients’ expectations and experiences of epilepsy surgery: A population-based long-term qualitative study2016Inngår i: Epilepsia, ISSN 0013-9580, E-ISSN 1528-1167, Vol. 57, nr 4, s. 605-611Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Objective The aim of this prospective and population-based longitudinal study was to explore patients’ expectations before surgery and their experiences both short and long term after epilepsy surgery. Methods A national sample of adult patients answered open-ended questions preoperatively, 2 years after surgery and at a cross-sectional long-term follow-up (mean 13 years, standard deviation [SD] 1.85). The answers were analyzed by qualitative content analysis. Results Eighty patients participated in the study. Before surgery, patients experienced a belief in a “normal” life; they hoped for reduction of seizures and medication, a richer social life, and more self-confidence. However, they also experienced anxiety of the unknown. They were afraid of the operation, of continued seizures, and of complications. At both postoperative follow-ups patients experienced increased independence. They had symptom reduction, felt relief from worries and fears, and felt that they had a new life. However, some patients experienced that the operation had changed their life to the worse due to both psychological and neurologic adverse effects, regardless of whether they had obtained seizure freedom or improvement. Significance Positive experiences of epilepsy surgery dominated, both in the short and long term. However, attention must be paid to negative expectations before and negative experiences after surgery in order to provide individual support and information. This should increase the possibility for patients to have realistic hopes before surgery and to find coping strategies in the new life situation after surgery.

  • 16.
    Ozanne, Anneli
    et al.
    University of Gothenburg, Institute of Health and Care Sciences, Sahlgrenska Academy, Gothenburg, Sweden..
    Johansson, D
    University of Gothenburg, Department of Clinical Neuroscience, Institute of Neuroscience and Physiology, Sahlgrenska Academy, Gothenburg, Sweden.
    Hällgren Graneheim, Ulla
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. Umeå University, Department of Nursing, Umeå, Sweden.
    Malmgren, K
    University of Gothenburg, Department of Clinical Neuroscience, Institute of Neuroscience and Physiology, Sahlgrenska Academy, Gothenburg, Sweden.
    Bergquist, F
    University of Gothenburg, Department of Pharmacology, Institute of Neuroscience and Physiology, Sahlgrenska Academy, Gothenburg, Sweden.
    Alt Murphy, M
    University of Gothenburg, Department of Clinical Neuroscience, Institute of Neuroscience and Physiology, Sahlgrenska Academy, Gothenburg, Sweden.
    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.

  • 17.
    Ozanne, Anneli
    et al.
    Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Box 457, 405 30 Gothenburg,Sweden; Sahlgrenska University Hospital, Gothenburg, Sweden; Department of Clinical Neuroscience, Institute of Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg, Box 410, 405 30 Gothenburg, Sweden.
    Verdinelli, Cecilia
    Sahlgrenska University Hospital, Gothenburg, Sweden; Department of Paediatrics, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
    Olsson, Ingrid
    Sahlgrenska University Hospital, Gothenburg, Sweden; Department of Paediatrics, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
    Edelvik, Anna
    Sahlgrenska University Hospital, Gothenburg, Sweden; Department of Clinical Neuroscience, Institute of Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg, Box 410, 405 30 Gothenburg, Sweden.
    Hällgren Graneheim, Ulla
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. Department of Nursing, Umeå University, 901 87 Umeå, Sweden.
    Malmgren, Kristina
    Sahlgrenska University Hospital, Gothenburg, Sweden; Department of Clinical Neuroscience, Institute of Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg, Box 410, 405 30 Gothenburg, Sweden.
    Callosotomy in children: Parental experiences reported at long-term follow-up2018Inngår i: Epilepsy & Behavior, ISSN 1525-5050, E-ISSN 1525-5069, Vol. 86, s. 91-97Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Callosotomy is a palliative surgery method for selected individuals with severe, drug-resistant epilepsy. The aim of this retrospective study was to explore parental experiences of the family's life situation before and long after their child had undergone callosotomy. Semistructured interviews of the parents of 12 children were analyzed using a combination of inductive and deductive qualitative content analysis. Before surgery, parents felt that they lived in a chaotic bubble with an unbearable situation; their child had severe and frequent seizures and had to be looked after constantly. Most parents were both satisfied and dissatisfied with the given support and information. However, if the child did not improve after surgery, parents often felt that the information before surgery had not been adequate. After surgery, they found a glimpse of hope. They felt that the family got a new life; the reduced seizure severity led to a better life situation for the family. The support was described as both good and poor. The family life situation was complex, and even if they were partly satisfied with the support, it was still not enough. However, the life situation was also very stressful because of remaining seizures, behavioral problems, and sometimes, adverse effects of surgery. The families lived in disappointment and difficulty and had to fight for their rights. This indicates that these families need more information and social service coordination both before and long after surgery. They need not only tools to manage the child's disabilities but also substantial help to care for the child and to receive the social support they need.

  • 18.
    Ozanne, Anneli
    et al.
    University of Gothenburg, Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Box 457, 405 30 Gothenburg, Sweden; Department of Clinical Neuroscience and Rehabilitation, Institute of Neuroscience and Physiology, Sahlgrenska Academy, Box 410, 405 30 Gothenburg.
    Verdinelli, Cecilia
    University of Gothenburg, Department of Paediatrics, Institute of Clinical Sciences, Sahlgrenska Academy, Gothenburg, Sweden.
    Olsson, Ingrid
    University of Gothenburg, Department of Paediatrics, Institute of Clinical Sciences, Sahlgrenska Academy, Gothenburg, Sweden.
    Hällgren Graneheim, Ulla
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. Umeå University, Department of Nursing, SE-901 87 Umeå, Sweden.
    Malmgren, Kristina
    University of Gothenburg, Department of Clinical Neuroscience and Rehabilitation, Institute of Neuroscience and Physiology, Sahlgrenska Academy, Box 410, 405 30 Gothenburg, Sweden.
    Parental experiences before and long-term after their children's hemispherotomy: A population-based qualitative study2016Inngår i: Epilepsy & Behavior, ISSN 1525-5050, E-ISSN 1525-5069, Vol. 60, nr July, s. 11-16Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Severe childhood epilepsy has an impact on the whole family. For selected children, hemispherotomy is the treatment of choice. The aim of this study was to explore parents' experiences before and after hemispherotomy as reported at a long-term follow-up and their view on received information and support. This was a population-based qualitative descriptive study, using qualitative content analysis of interviews. Seven to eighteen years after hemispherotomy, parents of twenty-one operated children were interviewed about the family life situation, expectations before surgery, and support and information before and after surgery. Before surgery, the theme 'Living in a chaotic bubble' illuminates how parents felt: the family lived in isolation, they felt both dissatisfaction and satisfaction about support and information, and they experienced that surgery was a question about life or death. After surgery, the theme 'Hovering between success and disaster' illuminates how parents hovered between happiness if the surgery was successful and sadness about e.g., complications and behavior problems. They experienced both excellent and poor support, in hospital and at rehabilitation. Regardless of all concerns, parents were satisfied that the child had received an operation. The hemispherotomies were successful and generated a better life situation. However, in order to cope, families need support and information throughout the whole process, from the onset of epilepsy and for a long time after surgery. If the child has behavior problems, an assessment should be made before surgery in order for the families to get adequate support. The specialist team needs to be involved as early as possible and follow the families for several years after surgery. Focus should be on the whole family, if needed including grandparents; family-centered care might be relevant for this patient group.

  • 19.
    Ringnér, Anders
    et al.
    Umeå University, Department of Nursing,SE-901 87 Umeå, Sweden.
    Björk, Maria
    School of Health Sciences, Jönköping University, CHILD Research Group, Department of Nursing Science, Box 1026, SE-551 11 Jönköping, Sweden.
    Olsson, Cecilia
    Karlstad University, Department of Health Sciences, SE-651 88 Karlstad, Sweden..
    Hällgren Graneheim, Ulla
    Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för vårdvetenskap på avancerad nivå. Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå. Umeå University, Department of Nursing, SE-901 87 Umeå, Sweden.
    Person-centred information to parents in paediatric oncology (the PIFBO study): A study protocol of an ongoing RCT.2015Inngår i: BMC Nursing, ISSN 1472-6955, E-ISSN 1472-6955, Vol. 14, artikkel-id 69Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: Parents of children with cancer experience a demanding situation and often suffer from psychological problems such as stress. Trying to coping with the complex body of information about their child's disease is one factor that contributes to this stress. The aim of this study is to evaluate an intervention for person-centred information to parents of children with cancer that consists of four sessions with children's nurses trained in the intervention method.

    METHODS/DESIGN: This is a multi-centre RCT with two parallel arms and a 1:1 allocation ratio. The primary outcome is illness-related parental stress. Secondary outcomes are post-traumatic stress symptoms, anxiety, depression, satisfaction with information, expected and received knowledge, and experiences with health care providers. A process evaluation is performed to describe experiences and contextual factors. Data are collected using web questionnaires or paper forms according to the parents' preference, audio recording of the intervention sessions, and qualitative interviews with parents and the intervention nurses.

    DISCUSSION: Few studies have evaluated information interventions for parents of children with cancer using large multi-centre RCTs. This intervention is designed to be performed by regular staff children's nurses, which will facilitate implementation if the intervention proves to be effective.

    TRIAL REGISTRATION: Clinical trials NCT02332226 (December 11, 2014).

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