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  • 51. Ozanne, Anneli
    et al.
    Hällgren Graneheim, Ulla
    Umeå University, Faculty of Medicine, Department of Nursing. Department of Health Sciences, University West, Trollhättan, Sweden.
    Ekstedt, Gerd
    Malmgren, Kristina
    Patients' expectations and experiences of epilepsy surgery - A population-based long-term qualitative study2016In: Epilepsia, ISSN 0013-9580, E-ISSN 1528-1167, Vol. 57, no 4, p. 605-611Article in journal (Refereed)
    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.

  • 52.
    Ozanne, Anneli O.
    et al.
    Sahlgrenska University Hospital, Gothenburg, Sweden .
    Graneheim, Ulla Hällgren
    Umeå University, Faculty of Medicine, Department of Nursing.
    Strang, Susann
    Sahlgrenska University Hospital, Gothenburg, Sweden .
    Struggling to find meaning in life among spouses of people with ALS2015In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 4, p. 909-916Article in journal (Refereed)
    Abstract [en]

    Objective: The aim of this study was to illuminate experiences of finding meaning in life among spouses of people with amyotrophic lateral sclerosis. Method: Thirteen interviews were analyzed with qualitative content analysis. Results: The spouses were struggling for meaning at the end of a dark tunnel. They felt limited and isolated in their proximity to death. They lived imprisoned lives, felt lonely, considered life to be unfair and incomplete, and mourned the loss of their future. However, they found meaning despite the proximity of death through cherishing their own lives, fellowship, accepting the present, and believing in meaning after the partner's death. Significance of results: Meaning in life strengthened spouses' well-being and ability to find pleasure in a difficult situation. It also strengthened their will to live after the partner's death. Limitations and isolations were strong predictors of what could impair their well-being and the possibility of finding meaning after the partner's death. Spouses need individual support throughout the disease process and after the partner's death, to give them the strength to find meaning in life and prioritize what is important for them. Paying attention to what might prevent them from finding meaning could make it easier to help them in their situation. Providing joint support to the patient and spouse might also help them to see each other's situation, come together, and help each other.

  • 53. Ozanne, Anneli O.
    et al.
    Hällgren Graneheim, Ulla
    Umeå University, Faculty of Medicine, Department of Nursing.
    Strang, Susann
    Finding meaning despite anxiety over life and death in amyotrophic lateral sclerosis patients2013In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 22, no 15-16, p. 2141-2149Article in journal (Refereed)
    Abstract [en]

    Aim and objectives To illuminate how people with amyotrophic lateral sclerosis (ALS) create meaning despite the disease. Background Coping strategies for living with ALS have already been investigated. However, there is a lack of studies on how people with the disease find meaning and what helps and hinders this. Design A qualitative descriptive study. Methods Fourteen individual interviews were performed in Spring 2007. The interviews were analysed by qualitative content analysis. Results Two themes emerged to illuminate the complex life situation of the interviewees: experiences of anxiety over life and death and finding meaning despite the illness. It became clear that the uncertain journey towards death was more frightened than death itself. Despite the incurable disease, which brought feelings of life and death anxiety, physical loss, unfairness, guilt, shame and existential loneliness, they also found meaning in life, which strengthened their will to live. Meaning was found through their family and friends, the act of giving and receiving help, the feeling of having a life of their own and accepting the present. The perspective of life was transferred to a deeper view where material things and quarrels were no longer in focus. Conclusions Despite the disease, the participants found meaning in life which strengthened their will to live. Relevance to clinical practiceThe balance between anxiety over life and death and finding meaning in life indicates the importance of support through the whole disease process. Both disease-specific problems and existential questions must be tackled. Nurses and other professionals need to be aware of the patients' existential qualms. There is a need to focus on what is important for the individual, and emphasis must be placed on where that person can find meaning.

  • 54. Ozanne, Anneli Olsson
    et al.
    Graneheim, Ulla H.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Persson, Lennart
    Strang, Susann
    Factors that facilitate and hinder the manageability of living with amyotrophic lateral sclerosis in both patients and next of kin2012In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 21, no 9-10, p. 1364-1373Article in journal (Refereed)
    Abstract [en]

    Aim and objectives. This study aims to illuminate factors that facilitate and hinder the manageability of living with amyotrophic lateral sclerosis in patients and next of kin. Fourteen patients and 13 next of kin were interviewed. Background. The whole family becomes affected when a person gets the disease. Therefore, it is important to identify strategies for managing the life situation among both patients and their next of kin. Design. A qualitative descriptive study. Method. This study based on individual interviews was performed in spring 2007. The interviews were subjected to qualitative content analysis. Results. The results indicate constant fluctuation between opportunities and limitations in individual ability - of patients and family members - to manage the life situation. Both patients and next of kin devised strategies to manage their situations through acceptance, living in the present and perceiving real presence and support from family, friends and authorities. Dysfunctional relationships with family members, friends, or authorities reduced the manageability of the situation. Furthermore, patients experienced difficulties managing their situations when forced into passivity and increased dependence. Next of kin experienced decreased ability to manage because of burden, lack of own time and feelings of being controlled. Conclusion. The fluctuations in manageability and the similarities and differences between the pairs, indicate the importance of support, both for the individual and the family. Relevance to clinical practice. Fluctuations in manageability and similarities and differences between approaches to managing the situation suggest a need for input from caregivers, for the whole family. Family members need support and time for their own needs and also the opportunity to increase their awareness and understanding of the needs of other family members. This study may give health personnel insight into how to help families devise strategies to manage a complex life situation.

  • 55. Ozanne, Anneli
    et al.
    Verdinelli, Cecilia
    Olsson, Ingrid
    Edelvik, Anna
    Hällgren Graneheim, Ulla
    Umeå University, Faculty of Medicine, Department of Nursing. Department of Health Sciences, University West, Trollhättan, Sweden.
    Malmgren, Kristina
    Callosotomy in children - Parental experiences reported at long-term follow-up2018In: Epilepsy & Behavior, ISSN 1525-5050, E-ISSN 1525-5069, Vol. 86, p. 91-97Article in journal (Refereed)
    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. 

  • 56. Ozanne, Anneli
    et al.
    Verdinelli, Cecilia
    Olsson, Ingrid
    Graneheim, Ulla H.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Malmgren, Kristina
    Parental experiences before and long-term after their children's hemispherotomy - A population-based qualitative study2016In: Epilepsy & Behavior, ISSN 1525-5050, E-ISSN 1525-5069, Vol. 60, p. 11-16Article in journal (Refereed)
    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.

  • 57.
    Ringnér, Anders
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Clinical Sciences, Paediatrics.
    Björk, Maria
    Jönköping University, Jönköping, Sweden; University of Skövde, Skövde, Sweden.
    Olsson, Cecilia
    Karlstad University, Karlstad, Sweden.
    Hällgren Graneheim, Ulla
    Umeå University, Faculty of Medicine, Department of Nursing. Department of Health Sciences, University West, Trollhättan, Sweden.
    Person-centred information to parents in paediatric oncology (the PIFBO study): a study protocol of an ongoing RCT2015In: BMC Nursing, ISSN 1472-6955, E-ISSN 1472-6955, Vol. 14, article id 69Article in journal (Refereed)
    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.

  • 58.
    Ringnér, Anders
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Jansson, Lilian
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hällgren Graneheim, Ulla
    Umeå University, Faculty of Medicine, Department of Nursing.
    Parental experiences of information within pediatric oncology2011In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 28, no 4, p. 244-251Article in journal (Refereed)
    Abstract [en]

    Parents of children with cancer use information to create knowledge about their child's disease. Information can help parents reduce chaos and create a feeling of control, but there are often obstacles to its acquisition, which has been described as similar to learning a new language. The purpose of this study was to describe parents' experiences of acquiring and using information to create knowledge about their child's cancer during the course of the illness. The authors used qualitative content analysis on data from focus groups and individual interviews with 14 parents of children with cancer. Two themes were constructed: (a) feeling acknowledged as a person of significance included feeling safe and secure in spite of uncertainty, having one's hopes supported, and getting relief from other families' experiences; (b) feeling like an unwelcome guest included feeling abandoned at important milestones, feeling forced to nag for information, and feeling burdened by the obligation to inform others. Parents may need extra attention at important milestones such as treatment cessation, with information meetings grounded in the parents' own needs.

  • 59.
    Ringnér, Anders
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Jansson, Lilian
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hällgren Graneheim, Ulla
    Umeå University, Faculty of Medicine, Department of Nursing.
    Parental experiences of information within pediatric oncology2011Conference paper (Refereed)
  • 60.
    Ringnér, Anders
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Jansson, Lilian
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hällgren Graneheim, Ulla
    Umeå University, Faculty of Medicine, Department of Nursing.
    Professional caregivers' perceptions of providing information to parents of children with cancer2011In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 28, no 1, p. 34-42Article in journal (Refereed)
    Abstract [en]

    Information has been described as a critical part of the care for parents of children with cancer, but not much is known about how caregivers makes decisions about informing parents. This study aims to illuminate professional caregivers' perceptions of providing information to parents of children with cancer. Twenty caregivers at a Swedish pediatric oncology ward participated in four focus group interviews. The interviews were transcribed verbatim and subjected to qualitative content analysis. Two themes were found: Matching the amount of information to the parents' needs concerned situations where the amount of information provided according to the caregivers' assessment is deemed too small, appropriate, or too large. Navigating through a vague structure dealt with a disrupted setting, unclear responsibilities within the team, difficult timing, unintelligible information, and underused tools for communication. Implications for intervention development are discussed.

  • 61.
    Ringnér, Anders
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Karlsson, Stig
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hällgren Graneheim, Ulla
    Umeå University, Faculty of Medicine, Department of Nursing.
    A person-centred intervention for information to parents of children with cancer: experiences and effectsManuscript (preprint) (Other academic)
    Abstract [en]

    Objective. The aim of this paper was to describe the experiences and effects of participating in a person-centred information intervention aimed at parents of children with cancer.

    Methods. Eight parents participated in the intervention, which started two months after the child’s diagnosis and was based upon the representational approach for patient education. A mixed method approach was employed. The experiences were captured via quali­tative interviews and the effects were evaluated using a single-case design with web-based questionnaires.

    Results. Parents expressed a high satisfaction with the inter­vention, as reported in the follow-up interviews and/or in the scale measuring satisfaction. However, no changes were seen in the measures for psychosocial distress.

    Conclusion. The intervention was feasible and appreciated by parents but further research is needed considering the effect on parental perceived stress.

  • 62.
    Ringnér, Anders
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Karlsson, Stig
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hällgren Graneheim, Ulla
    Umeå University, Faculty of Medicine, Department of Nursing.
    A person-centred intervention for providing information to parents of children with cancer: experiences and effects2015In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 19, no 3, p. 318-324Article in journal (Refereed)
    Abstract [en]

    Purpose: The aim of this paper is to describe the experiences of participating in a person-centred information intervention aimed at parents of children with cancer.

    Methods: Eight parents participated in the intervention, beginning two months after their child's diagnosis. The intervention was based upon the representational approach to patient education and a mixed method approach was employed in the study. The experiences of parents and intervention nurses were captured via qualitative interviews and the effects of the intervention on parental psychosocial measures, primarily perceived stress, were evaluated using a single-case design with web-based questionnaires.

    Results: Parents expressed high satisfaction with the intervention, as reported in the follow-up interviews and on the scale measuring satisfaction. However, no changes were seen in the quantitative measures of psychosocial distress. The nurses performing the intervention felt it was useful and feasible.

    Conclusions: A representational approach to providing person-centred information to parents of children with cancer was appreciated and considered feasible by both the parents and the intervention nurses. However, further research is needed considering the lack of effect on the parents' perceived stress.

  • 63.
    Ringnér, Anders
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Öster, Inger
    Umeå University, Faculty of Medicine, Department of Nursing.
    Björk, Maria
    Högskolan i Skövde, Institutionen för vård och natur.
    Graneheim, Ulla H
    Umeå University, Faculty of Medicine, Department of Nursing.
    Talking via the child: discursively created interaction between parents and health care professionals in a pediatric oncology ward2013In: Journal of Family Nursing, ISSN 1074-8407, E-ISSN 1552-549X, Vol. 19, no 1, p. 29-52Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to describe discursively constructed interactions between parents and health care professionals (HCPs) in a pediatric oncology ward. Field notes from 70 focused participant observations and 16 informal interviews with 25 HCPs interacting with 25 parents of children with cancer were analyzed using discursive psychology. Six dominant interpretative repertoires (flexible parts of discourses used in everyday interaction) were found. Repertoires used by the HCPs were child, parent, or family oriented, mirroring the primary focus of the interaction. Parents used a spokesperson repertoire to use their own expertise to talk on behalf of the child; an observer repertoire, in which they kept in the background and interfered only when needed; or a family member repertoire to position themselves on a level equal to the ill child. The results are discussed in relation to philosophies influencing pediatric nursing, such as family-centered nursing and child-centered nursing.

  • 64.
    Thyme, Karin Egberg
    et al.
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Psychiatry.
    Wiberg, Britt
    Umeå University, Faculty of Social Sciences, Department of Psychology.
    Lundman, Berit
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hällgren Graneheim, Ulla
    Umeå University, Faculty of Medicine, Department of Nursing.
    Qualitative content analysis in art psychotherapy research: concepts, procedures, and measures to reveal the latent meaning in pictures and the words attached to the pictures2013In: The arts in psychotherapy, ISSN 0197-4556, E-ISSN 1873-5878, Vol. 40, no 1, p. 101-107Article in journal (Refereed)
    Abstract [en]

    The aim of this methodological paper is to describe and apply qualitative content analysis to a psychodynamic art psychotherapy context, and to give an example of the procedures used to analyse pictures and words in one time-limited psychodynamic art psychotherapy session, here named PDT/Scribbling. The art method was used with a female patient. Qualitative content analysis was used to analyse one scribble with its amplification together with the patient's own clarifying words explaining the pictures. In addition, the words spoken before and after scribbling were analysed in order to capture the whole psychotherapeutic process. In the application we coded and categorised colours and elements of the scribbles and amplifications, which together with categories of the patient's own words before and after scribbling resulted in three sub-themes and an overarching theme: permitting herself to leave a victim position and take charge of her life. The conclusion of this methodological paper is that qualitative content analysis is a meaningful method for analysing pictures and words from psychodynamic art psychotherapy sessions, keeping the manifest messages and the latent meanings in the pictures intact.

  • 65.
    Wilhelmsson, Anna-Britta
    et al.
    Umeå University, Faculty of Social Sciences, Department of Education.
    Hällgren Graneheim, Ulla
    Umeå University, Faculty of Medicine, Department of Nursing.
    Berge, Britt-Marie
    Umeå University, Faculty of Social Sciences, Department of Education.
    Johansson, Sigurd
    Umeå University, Faculty of Social Sciences, Department of Education.
    Åström, Sture
    Umeå University, Faculty of Medicine, Department of Nursing.
    Everyday life experiences among relatives of persons with mental disabilities2010In: Procedia - Social and Behavioral Sciences, ISSN 1877-0428, E-ISSN 1877-0428, Vol. 2, no 2, p. 4896-4900Article in journal (Refereed)
    Abstract [en]

    Mental disability is one of the most significant health problems facing Europe today. For example Statistics reveal that between 20 and 40 percent of the Swedish population suffer from some forms of mental disease, ranging from grave psychoses to less serious anxiety and fear. This study has aimed to illuminate the experiences of relativeś in terms of contacts with persons with mental disabilities. Eighteen tape-recorded interviews were conducted with close relatives of persons suffering from mental disabilities within the health care district of Umeå, Sweden. The results indicate that the daily lives guilt about not providing enough support for their relatives. In addition to feeling physically exhausted and worn out they felt as though they carried a large responsibility and lacked support and back-up in their daily life.

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