| 1. |
- Anderzen-Carlsson, Agneta, 1966-, et al.
(författare)
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Knowledge, skills and information needs on older residents’ hearing loss and hearing aids : Translation and adaptation of a Norwegian instrument
- 2022
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Konferensbidrag (refereegranskat)abstract
- Objective: The objective with the project is to find a valid and culturally appropriate instrument for measuring the professionals' knowledge, skills and information needs on older residents’ hearing loss and hearing aids. Such an instrument could optimally be used in clinical praxis, as well as in research, for cross-sectional studies and for measuring change related to educational interventions.Materials: The Norwegian instrument Knowledge, skills and information needs on residents’ hearing loss and hearing aids was identified in the literature. Its content was, by the research group regarded as relevant in a Swedish setting, although some cultural adaptations seemed to be necessary.Methods: The translation and cultural adaptations were performed in line with the International Society For Pharmacoeconomics and Outcomes Research (ISPOR) Task Force For Translation and Cultural Adapation, as outlined below:1. We first asked one of the original authors for permission to translate the instrument.2. Two of the authors (KB and MB) individually translated the content of the instrument. Their first language is Swedish, but both are familiar with the Norwegian language.3. The other authors individually and together checked the translations and judged whether the statements were comprehensible in Swedish, and made necessary cultural adaptations. For example, the nursing home settings, and job types within this sector are not identical in the two countries.4. An independent person, with knowledge of both Swedish and Norwegian (Norwegian being the first language), but with no previous knowledge of the instrument made a back-translation. This person had good knowledge of the setting, being a professor in geriatrics.5. The authors compared the original version of the instrument with the back-translated version and discussed some inconsistences with the first author of the original instrument, before we all agreed on a first preliminary Swedish version.6. 12 professionals having audiological competence, experience of nursing older people or teaching in nursing piloted the first preliminary Swedish version. They suggested some reformulations of questions and responses, which were discussed and decided on within the research group.7. The next step is to test the preliminary Swedish version of the instrument, which will take place during the winter of 2019-2020. A sample of professionals working in different nursing homes in two Swedish counties will be invited to participate. The plan is to include 400 professionals. The sample size is based on an optimal sample for performing a factor analysis as part of the assessment of the psychometric properties of the preliminary Swedish version. It also allows cross-sectional sub-analyses, based on different groups of professionals and level of nursing home.8. The project will be presented in a scientific journal, and used in a future intervention study. The instrument can also be used in clinical improvement work.Conclusion: The results are promising. To the best of our knowledge, there is no Swedish instrument available for measuring professionals' knowledge, skills and information needs on older residents’ hearing loss and hearing aids. It seems necessary to have such an instrument, as the number of older people increases in Sweden, as well as worldwide. Impaired hearing, as well as assistive needs increase with age, and thus it is of great importance to ensure that professionals working with older people have sufficient knowledge to assist them.
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| 2. |
- Anderzén-Carlsson, Agneta, 1966-, et al.
(författare)
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Så sjuk av så lite
- 1996
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Bok (populärvet., debatt m.m.)
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| 3. |
- Carlsson, Eva, 1952-, et al.
(författare)
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Ways of understanding being a healthcare professional in the role of family member of a patient admitted to hospital : A phenomenographic study
- 2016
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Ingår i: International Journal of Nursing Studies. - London, United Kingdom : Elsevier. - 0020-7489 .- 1873-491X. ; 53, s. 50-60
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Tidskriftsartikel (refereegranskat)abstract
- Healthcare professionals' experience of being family member of a patient can contribute to knowledge development and organizational learning in further ways than the experiences of general family members. However, there is little research on healthcare professionals' experience being on 'the other side of the bed'.Objective: To describe how healthcare professionals understand the role of being a healthcare professional and a family member of a patient admitted to hospital.Design: Qualitative with a phenomenographic approach.Setting: Three Swedish hospitals.Participants: All healthcare professionals in three hospitals were invited. Twenty-one volunteered for the study and 18 met the inclusion criteria; to have one year of professional experience and to have visited the family member in hospital daily during hospitalization. Family members in maternity or psychiatric care were excluded.Methods: Semi-structured interviews were used for data collection. Transcripts were analyzed with a phenomenographic method to describe variation and commonality in the ways of understanding the phenomenon under study.Results: Four dominant ways of understanding the phenomenon were identified; the informed bystander, the supervisor, the advocate and the carer. The four ways of understanding were hierarchically related with "The informed bystander" being least involved in the care of the family member and "The carer" more or less taking over the patient's care because of inappropriate, unsafe or omitted care. Common for all ways of understanding the phenomenon, except "The informed bystander", was the difficult balance between their loyalty toward the family member and their colleagues among the staff. "The informed bystander" and "The supervisor" are ways of understanding the phenomenon under study that, to our knowledge, has not been described before.Conclusions: This study describes how being a family member of a patient can be understood in four different ways when the family member is a healthcare professional. The findings show similarities to previous studies on general family members as well as nurse-family members of patients in critical care. The need for professional communication, support and coordination will be substantially different if the family member understands his/her role as an informed bystander compared to if they perceive themselves as a carer. The role conflict and ambivalence toward building relationships described are aspects that need further exploration, as does the experience of being forced to care for a family member. Our findings contribute with new knowledge developing patient- and family-centered care.
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| 4. |
- Nordlind, Anna, 1972-, et al.
(författare)
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How paediatric departments in Sweden facilitate giving children a voice on their experiences of healthcare : A cross‐sectional study
- 2022
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Ingår i: Health Expectations. - : John Wiley & Sons. - 1369-6513 .- 1369-7625. ; 25:1, s. 384-393
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundIn January 2020, the United Nations Convention on the Rights of the Child was incorporated into Swedish law. According to Swedish regulations, patients are to be given the opportunity to participate in quality improvement. Sometimes, the patients are children who have the right to be heard on matters concerning them, such as their experience of a hospital visit.ObjectiveThis study aimed to describe how Swedish paediatric departments facilitate children's voices on their healthcare experiences and how their perspectives are taken into account in quality improvement work.MethodsThis study has a descriptive cross-sectional design. Data were collected using a study-specific survey sent by e-mail to all the heads of the paediatric departments in Sweden, with both inpatient and outpatient care. The response rate was 74% (28 of 38 departments).ResultsThe results demonstrated a variation in questionnaires used and to whom they were targeted; less than half of the participating departments reported having had questionnaires aimed at children. The results also indicated a major variation in other working methods used to allow children to voice their experiences in Swedish paediatric departments. The results indicate that the national co-ordination in facilitating the children's rights to be heard on their experiences in healthcare organisations can be improved.ConclusionFurther research is required to ascertain which method is the most practically effective in paediatric departments, in what way children prefer to be heard regarding their experience of and perspectives on healthcare, and what questions need to be asked. A validated national patient-reported experience measure developed with and aimed at children could provide them with equal opportunities to voice their experiences in healthcare, regardless of their diagnoses or which paediatric department they visit.
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| 5. |
- Piippo-Huotari, Oili, 1959-, et al.
(författare)
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New patient-controlled abdominal compression method in radiography : radiation dose and image quality
- 2018
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Ingår i: Acta Radiologica Open. - : Sage Publications. - 2058-4601. ; 7:5, s. 1-8
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Tidskriftsartikel (refereegranskat)abstract
- Background: The radiation dose for patients can be reduced with many methods and one way is to use abdominal compression. In this study, the radiation dose and image quality for a new patient-controlled compression device were compared with conventional compression and compression in the prone position.Purpose: To compare radiation dose and image quality of patient-controlled compression compared with conventional and prone compression in general radiography.Material and Methods: An experimental design with quantitative approach. After obtaining the approval of the ethics committee, a consecutive sample of 48 patients was examined with the standard clinical urography protocol. The radiation doses were measured as dose-area product and analyzed with a paired t-test. The image quality was evaluated by visual grading analysis. Four radiologists evaluated each image individually by scoring nine criteria modified from the European quality criteria for diagnostic radiographic images.Results: There was no significant difference in radiation dose or image quality between conventional and patient-controlled compression. Prone position resulted in both higher dose and inferior image quality.Conclusion: Patient-controlled compression gave similar dose levels as conventional compression and lower than prone compression. Image quality was similar with both patient-controlled and conventional compression and was judged to be better than in the prone position.
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| 6. |
- Prenkert, Malin, 1967-, et al.
(författare)
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Healthcare-professional patients’ conceptions of being ill and hospitalised : a phenomenographic study
- 2017
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Ingår i: Journal of Clinical Nursing. - : John Wiley & Sons. - 0962-1067 .- 1365-2702. ; 26:11-12, s. 1725-1736
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Tidskriftsartikel (refereegranskat)abstract
- Aims and Objectives: To describe the variation of conceptions of being ill and hospitalised, from the perspective of health-care-professional-patients.Background: Previous literature focuses on either physicians' or nurses' experiences of being a patient, without aiming at determining a variation of ways of understanding that phenomena. Nor have we been able to identify any study reporting other health-care-professionals' experiences.Design: This study has an inductive descriptive design.Methods: Qualitative interviews with health care professionals (n=16), who had been hospitalised for at least two days. Phenomenographic data analysis was conducted.Results: The feelings of security were based on knowledge, insight and trust, and acceptance of the health care system. Being exposed and totally dependent due to illness provoked feelings of vulnerability and insecurity. The patients used their knowledge to achieve participation in the care. The more severe they perceived their illness to be, the less they wanted to participate and the more they expressed a need for being allowed to surrender control. The patients' ideal picture of care was sometimes disrupted and based on their experience they criticised care and made suggestions that could contribute to general care improvements.Conclusions: Health-care-professional patients' have various conceptions of being ill and hospitalised. Based on the general nature of the many needs expressed, we believe that the some insights provided in this study can be transferred so as to also be valid for lay patients. Possibly, an overhaul of routines for discharge planning and follow-up, and adopting a person-centred approach to care, can resolve some of the identified shortcomings. Finally, the results can be used for the purpose of developing knowledge for health-care professions and for educational purposes.Relevance to clinical practice: The results can be used for the purpose of develop-ing knowledge for healthcare professions and for educational purposes.
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| 7. |
- Svantesson, Mia, 1960-, et al.
(författare)
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'Just so you know, the patient is staff' : healthcare professionals' perceptions of caring for healthcare professional-patients
- 2016
-
Ingår i: BMJ Open. - : BMJ Publishing Group. - 2044-6055. ; 6:1
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Tidskriftsartikel (refereegranskat)abstract
- Objective: To explore healthcare professionals' conceptions of the care of patients who are also healthcare professionals.Design: Explorative, with a qualitative, phenomenographic approach.Participants and setting: 16 healthcare personnel within different professions (doctors, nurses, assistant nurses, physiotherapists, occupational therapists) were interviewed about the care of 32 patients who were themselves members of different healthcare professions, in one healthcare organisation in Sweden.Results: The care of patients who are healthcare professionals was conceived in five different ways, as: usual, dutiful, prioritised and secure, insecure and responsive. An initial conception was that their care was usual, just as for any other patient, and also a perceived duty to treat them and to protect their right to be a patient-as any other patient. Exploring further, informants described that these patients did receive secure and prioritised care, as the informants experienced making a greater commitment, especially doctors giving privileges to doctor-patients. A conception of insecure care infused the informants' descriptions. This comprised of them feeling intimidated in their professional role, feeling affected by colleagues' stressful behaviour and ambiguity whether the healthcare professional-patient could be regarded as a competent professional. The deepest way of understanding care seemed to be responsive care, such as acknowledging and respecting the patient's identity and responding to their wishes of how treatment was to be met.Conclusions: Caring for healthcare professionals seems to trigger different ethical approaches, such as deontology and ethics of care. According to ethics of care, the findings may indeed suggest that these patients should be cared for just as any other patients would be, but only if this means that they are cared for as persons, that is, they are given 'person-centred care'. This would imply balancing between acknowledging the vulnerable patient in the colleague and acknowledging the identity of the colleague in the patient.
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| 8. |
- Wallin, Agneta, et al.
(författare)
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Radiographers' experience of risks for patient safety incidents in the radiology department
- 2019
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 28:7-8, s. 1125-1134
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Tidskriftsartikel (refereegranskat)abstract
- Aims and objectives To describe potential risks for patient safety incidents in the radiology department from a radiographer's perspective. Background A radiology department is a high-tech environment with high communication activity between different healthcare systems in combination with a large patient flow. Risks for patient safety incidents exist in every phase of a radiological examination. Due to the nature of the activity, a radiology department needs to have its own range of measures to prevent risks linked to radiology. Design A qualitative descriptive design. Methods Semi-structured interviews were carried out with 17 radiographers during the period September 2015 to February 2016. The data were analysed using conventional content analysis. This study followed the COREQ checklist criteria for the reporting of qualitative research. Results The analysis yielded 20 different patient safety incidents that could result in the following six types of healthcare-associated harm: Patients could be exposed to unnecessary radiation; patients could receive an inaccurate diagnosis; patients could incur drug-induced damage; patients could suffer direct physical injury; or, their examination and treatment could be delayed or not carried out; or, their general health condition could deteriorate. Conclusion Lack of communication and knowledge, both internally and externally, can increase risks for patient safety incidents. The study describes a complex chain of activities that represent risks in the radiology department. It needs to be pointed out that it is not always the activities in the radiology department that cause the harm. Relevance to clinical practice To carry out preventive patient safety work, a comprehensive analysis of the entire care chain is required. Patient safety work should also focus on improvement in communication both internally, within the radiology department, and externally. Standardised methodological guidelines, consistent prescriptions of method from the radiologist and a good working environment are internal success factors for patient safety at the radiology department.
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| 9. |
- Andersen, Randi Dovland, et al.
(författare)
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Pain burden in children with cerebral palsy (CPPain) survey : Study protocol
- 2022
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Ingår i: Paediatric and Neonatal Pain. - : John Wiley & Sons. - 2379-5824 .- 2637-3807. ; 4:1, s. 11-21
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Tidskriftsartikel (refereegranskat)abstract
- Pain is a significant health concern for children living with cerebral palsy (CP). There are no population-level or large-scale multi-national datasets using common measures characterizing pain experience and interference (ie, pain burden) and management practices for children with CP. The aim of the CPPain survey is to generate a comprehensive understanding of pain burden and current management of pain to change clinical practice in CP. The CPPain survey is a comprehensive cross-sectional study. Researchers plan to recruit approximately 1400 children with CP (primary participants) across several countries over 6-12 months using multimodal recruitment strategies. Data will be collected from parents or guardians of children with CP (0-17 years) and from children with CP (8-17 years) who are able to self-report. Siblings (12-17 years) will be invited to participate as controls. The CPPain survey consists of previously validated and study-specific questionnaires addressing demographic and diagnostic information, pain experience, pain management, pain interference, pain coping, activity and participation in everyday life, nutritional status, mental health, health-related quality of life, and the effect of the COVID-19 pandemic on pain and access to pain care. The survey will be distributed primarily online. Data will be analyzed using appropriate statistical methods for comparing groups. Stratification will be used to investigate subgroups, and analyses will be adjusted for appropriate sociodemographic variables. The Norwegian Regional Committee for Medical and Health Research Ethics and the Research Ethics Board at the University of Minnesota in USA have approved the study. Ethics approval in Canada, Sweden, and Finland is pending. In addition to dissemination through peer-reviewed journals and conferences, findings will be communicated through the CPPain Web site (www.sthf.no/cppain), Web sites directed toward users or clinicians, social media, special interest groups, stakeholder engagement activities, articles in user organization journals, and presentations in public media.
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| 10. |
- Anderzen-Carlsson, Agneta, 1966-
(författare)
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A qualitative evaluation of the National Expert Team regarding the assessment and diagnosis of deafblindness in Sweden
- 2017
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Ingår i: Scandinavian Journal of Disability Research. - : Routledge. - 1501-7419 .- 1745-3011. ; 19:4, s. 362-374
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Tidskriftsartikel (refereegranskat)abstract
- Deafblindness is a rare condition with multiple causes. Given its rarity, professionals generally have limited knowledge of this condition and insufficient experience managing it. Accordingly, in Sweden, a National Expert Team was established to assess and diagnose deafblindness. The aim of this study was to identify the conceptions of persons with deafblindness, parents of children with deafblindness and professionals involved in their care, rehabilitation and education regarding their participation in the assessment and diagnostic procedures performed by this national team. A phenomenographic design was employed. The main findings were illustrated by five descriptive categories: An opportunity for improvement in daily living, ability to interact with the cream of the crop, personal effort, effects of genetics beyond drawing blood and limited professional interaction.
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| 11. |
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| 12. |
- Anderzén-Carlsson, Agneta, 1966-
(författare)
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Att hantera rädsla hos barn med cancer
- 2008
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Ingår i: Onkologi i Sverige. - 1653-1582. ; 4:6, s. 14-20
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Tidskriftsartikel (populärvet., debatt m.m.)
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| 13. |
- Anderzén-Carlsson, Agneta, 1966-
(författare)
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CHARGE syndrome : a five case study of the syndrome characteristics and health care consumption during the first year in life
- 2015
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Ingår i: Journal of Pediatric Nursing. - : Elsevier. - 0882-5963 .- 1532-8449. ; 30:1, s. 6-16
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Tidskriftsartikel (refereegranskat)abstract
- CHARGE syndrome is characterized by impaired vision and hearing, as well as physical malformations. The aim of this study is to describe the characteristics of the malformations and the health care consumption during the first year, in a Swedish sample having CHARGE syndrome. Three of the five individuals fulfilled all the traditional criteria for a clinical diagnosis of CHARGE syndrome. All infants were hospitalized from 26 to 230. days, subjected to 10-34 different diagnostic procedures and prescribed 10-28 different medications during their first year. Coordinated and individually adapted care is urged, as these infants and their families are in of need multiple health care contacts.
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| 14. |
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| 15. |
- Anderzén-Carlsson, Agneta, 1966-
(författare)
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Children with cancer : focusing on their fear and on how their fear is handled
- 2007
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Various fears in children with cancer have previously been identified as a result of studying e.g. symptom experiences, distress and uncertainty within this population. Studies of the meaning the children give to their fear, as well as the handling of their fear seem to be sparse, however. Also, fear has not been an exclusive focus in previous studies. Professionals in clinical practice have pointed to the need for such research, which has prompted the present research work. The overall aim of this thesis was therefore twofold; firstly, the aim was to elucidate fear in children and adolescents with cancer in order to gain an understanding from the perspective of adolescents and parents. Secondly, it was to elucidate parents’ and professionals’ handling of the fear. This in order to gain a deeper understanding of what performances and manners the children and adolescents can face when being fearful. A qualitative descriptive design was adopted in the five included studies. The methods used in the data analysis were phenomenological hermeneutical method (studies I–III) and qualitative content analysis (studies IV–V). In study I six adolescent girls, aged 14–16 years, with experiences of various cancer diagnoses, but now declared fit, were interviewed. The results reveal that they experience their fear as embodied, which in the comprehensive understanding of the results was interpreted as a threat to their personal self, their whole existence. Their fear was seen as a holistic intertwined experience, including fear related to the physical body and to the social self. Also, existential fear was described. Their described experience was interpreted as suffering. Studies II and III share the same data. Fifteen parents of children at various ages with various cancer diagnoses were interviewed in focus groups about their experience of their child’s fear. In study II the result reveals how the parents experienced and understood their child’s fear. The fear was described as a multidimensional phenomenon, which was not always easy to identify. It was contrasted to feelings of unease and to absence of fear. In the comprehensive understanding the fear was interpreted as a suffering, as that was regarded to be what was the common meaning in the narratives. The suffering was interpreted as an ethical demand to the parents to take action. In study III the parents described their actions, i.e. they described how they dealt with the fear. Their actions were described as acting in the best interests of the child, which included striving to make the child feel secure and experience wellbeing, up to a certain point. However, after this point the parents used their parental authority to maintain the child’s physical health rather than trying to prevent or relieve the child’s fear. In the comprehensive understanding the parents’ handling of their child’s fear was interpreted as revealing mercy and as being synonymous with meeting the ethical demand put on them. In study IV ten experienced nurses and physicians were individually interviewed about how they handled fear in children with cancer. The result reveals that the existential issues were dealt with within the relationship with the child, on a sliding scale between closeness and distance, and that the fear related to medical procedures occurred on a continuum between support and lack of support. The various actions involved, and the manner in which these actions were performed, was described. In the observational study (study V) eleven parents and their children as well as eleven health professionals participated. They were observed at children’s routine visits at the outpatient clinic. The aim was to study the interactions related to fear. The result reveals that when children were fearful they expressed this both verbally and non-verbally. The parents’ and professionals’ actions and interactions in these situations were found to be characterized by recognition of the fear or lack of attention to the fear. The findings can contribute to a broadened knowledge on fear in children and adolescents with cancer. Awareness and understanding of the meaning adolescents give to their fear, and furthermore, of the parents’ experience and understanding of their child’s fear can provide tools for interacting with these groups. The findings on how fear is dealt with by the ones children have claimed as important sources for support, can give insights into what the child may face when being fearful. These insights can form the basis for individual, as well as collegial, reflections on what is done when children face fear, how fear is handled on an everyday basis and why it is handled in this way. Such reflections could lead to an ethical awareness of handling fear in children with cancer.
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| 16. |
- Anderzen-Carlsson, Agneta, 1966-, et al.
(författare)
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CHILDREN'S NARRATIVES OF SUPPORT FROM PARENTS WHEN EXPERIENCING FEAR RELATED TO ACUTE LYMPHOBLASTIC LEUKEMIA
- 2022
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Ingår i: Pediatric Blood & Cancer. - : John Wiley & Sons. - 1545-5009 .- 1545-5017. ; 69:Suppl. 5, s. S528-S528
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- Background and Aims: Children diagnosed with Acute Lymphoblastic Leukemia (ALL) typically undergo intense treatment with frequent hospitalizations. Medical, as well as existential fears have been identified. It has also been found that children's coping strategies develop during their illness trajectory. The literature on what children with ALL find to be valuable support from parents when experiencing fear is sparse. Thus, the aim of this presentation is to describe what young children find to be important support from their parents when experiencing fear related to ALL.Methods: The study had a longitudinal descriptive qualitative design. Thirteen children (3 girls and 10 boys), initially 5-9 years old were interviewed once to three times during their treatment period (approximately 2 months after the diagnosis, after 1 year, and at end of treatment). Data were analyzed using a matrix-based qualitative analysis method.Results: The parents’ physical and emotional closeness was the most frequently reported support. It eased the children's medical and existential fears. The children also found it supportive when the parents facilitated for them to participate in their care and when the parents acted as their advocate. Other supportive measures were offering distraction, talking to the child about their fears, assisting the professionals in alleviating pain and fear, being playful and encouraging. Five children also appreciated when their parents restricted them, during medical procedures. The experiences of support varied between children and between different time points during treatment.Conclusions: Although being quite young, the children were able to describe what they found to be supportive when experiencing fear, or for preventing fear. The parental support had an impact on the child's emotional, social and physical wellbeing. Professionals should encourage parents to stay with their child, and offer support to the parents, so that they in turn can support their child.
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| 17. |
- Anderzén Carlsson, Agneta, 1966-, et al.
(författare)
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Children’s Narratives of Support From Professionals when Experiencing Fear Related to Acute Lymphoblastic Leukemia
- 2020
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Ingår i: Pediatric Blood & Cancer. - : John Wiley & Sons. - 1545-5009 .- 1545-5017. ; 67:S4, s. 120-120
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Tidskriftsartikel (refereegranskat)abstract
- Children diagnosed with Acute Lymphoblastic Leukemia (ALL) typically face 2.5 years treatment, which initially is intense and includes frequent hospitalizations. Previous research has identified various fears during treatment: fear of getting needles, removal of adhesive tapes, having a feeding tube, taking tablets and the physical changes related to ALL itself, as well as to treatments. The children’s coping strategies develop during the course of illness. The literature on what children with ALL find to be supportive when experiencing fear is sparse. The aim of this presentation is thus to describe what children 5-9 years old find to be important support from professionals when experiencing fear related to ALL.
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| 18. |
- Anderzén-Carlsson, Agneta, 1966-, et al.
(författare)
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Dealing with fear : from the perspective of adolescent girls with cancer
- 2012
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Ingår i: European Journal of Oncology Nursing. - Oxon, United Kingdom : Elsevier. - 1462-3889 .- 1532-2122. ; 16:3, s. 286-292
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Tidskriftsartikel (refereegranskat)abstract
- Background: Previously fears in adolescents with cancer has been identified in relation to medical procedures, death, altered appearance and as having an overall influence on life, but to our knowledge young people's perspectives on dealing with fear have not been previously investigated.Purpose: To examine adolescents' perspectives on dealing with cancer related fear.Methods and sample: Six girls participated in qualitative interviews focussing on their fear and and how they dealt with it. Data were analysed by means of qualitative content analysis.Results: The results revealed two perspectives. First, the adolescents' own personal battle with fear. Second, they reported that they were not alone with their fear, as they shared it with significant others. An environment characterized by emotional presence helped them to deal with their fear, as well as prevented it from occurring.Conclusions: There is a need for staff and parents to be vigilant to the adolescents' need to feel cared for and allow them the opportunity to deal with their own fear, as at times they want to manage in their own way. Young patients have resources to cope with their fears and therefore should not be viewed as victims, but as young people with a great amount of competence, who benefit from a supportive environment.
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| 19. |
- Anderzén-Carlsson, Agneta, 1966-, et al.
(författare)
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Embodied suffering : experiences of fear in adolescent girls with cancer
- 2008
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Ingår i: Journal of Child Health Care. - London : Sage. - 1367-4935 .- 1741-2889. ; 12:2, s. 129-143
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Tidskriftsartikel (refereegranskat)abstract
- Previously, fear in adolescents with cancer has been sparsely described from an emic perspective. The aim of this study was to illuminate fear in adolescents with personal experience of cancer. The participants were six adolescent girls between the age of 14 and 16 years who were no longer under active treatment for cancer but still went for regular check-ups. Open interviews were conducted. Data were analysed according to the phenomenological hermeneutic method. In the result one main theme was identified: `an embodied fear — a threat to the personal self'. This theme was built up by three separate but intertwined themes: `experiencing fear related to the physical body', `experiencing existential fear' and `experiencing fear related to the social self'. In the comprehensive understanding the fear was interpreted from youth cultural aspects as well as a holistic perspective. The importance of professionals taking the whole person and their situation into account when meeting the fear is underlined.
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| 20. |
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| 21. |
- Anderzen Carlsson, Agneta, 1966-, et al.
(författare)
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Fear and coping during treatment for acute lymphatic leukemia : from the perspective of children 5-9 years old
- 2018
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Konferensbidrag (refereegranskat)abstract
- Background: The concept of fear can be defined as ”an unpleasant often strong emotion caused by expectation of danger”. It is reasonable to believe that fear and coping of fear, can vary during the course of treatment for ALL. The aim of the present study was to describe a longitudinal perspective on fear related to having ALL, based on children’s perspective, as well as to describe the strategies these children use when experiencing fear.Design: The study has a longitudinal descriptive qualitative design. Three girls and 10 boys, initially aged 5-9 were interviewed once to three times during their treatment period (approximately two months after the diagnosis, after one year and at the end of the 2.5-year long treatment). In total, 35 interviews were conducted. Data were analyzed using a matrix-based qualitative analysis method.Results: The children described fear of being subjected to needles and related to having a feeding tube, to remove adhesive tape and taking tablets, as well as fear related to the bodily changes caused by the ALL. Existential fears were most frequently mentioned at end of treatment. The children wanted to participate in their care. They used cognitive strategies, such as ”thinking the right way” and emotional strategies, such as crying out loud and kicking. The fears changed over time, but the fear of being subjected to needles remained for half of the children, but was less intense at the end of treatment. The strategies developed, and became more sophisticated over the treatment period.Conclusion: The fear changed throughout the course of treatment, and so did the strategies used. It is reasonable to believe that the need for support also vary, which is a topic for future research.
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| 22. |
- Anderzen-Carlsson, Agneta, 1966-, et al.
(författare)
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Fear and Coping During Treatment for Acute Lymphatic Leukemia - from the Perspective of Children 5-9 Years Old
- 2018
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Ingår i: Pediatric Blood & Cancer. - : John Wiley & Sons. - 1545-5009 .- 1545-5017. ; 65:Suppl.2, s. S598-S598
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- Background/Objectives: The concept of fear can be defined as ”an unpleasant often strong emotion caused by expectation of danger”. It is reasonable to believe that fear and coping of fear, can vary during the course of treatment for ALL. The aim of the present study was to describe a longitudinal perspective on fear related to having ALL, based on children's perspective, as well as to describe the strategies these children use when experiencing fear.Design/Methods: The study has a longitudinal descriptive qualitative design. Three girls and 10 boys, initially aged 5-9 were interviewed once to three times during their treatment period (approximately two months after the diagnosis, after one year and at the end of the 2.5-year long treatment). In total, 35 interviews were conducted. Data were analyzed using a matrix-based qualitative analysis method.Results: The children described fear of being subjected to needles and related to having a feeding tube, removing adhesive tape and taking tablets, as well as fear related to the bodily changes caused by the ALL. Existential fears were most frequently mentioned at the end of treatment. The children wanted to participate i n their care. They used cognitive strategies, such as ”thinking the right way” and emotional strategies, such as crying out loud and kicking. The fears changed over time, but the fear of being subjected to needles remained for half of the children, but was less intense at the end of treatment. The strategies developed, and became more sophisticated over the treatment period.Conclusions: The fear changed throughout the course of treatment, and so did the strategies used. It is reasonable to believe that the need for support also vary, which i s a topic for future research.
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| 23. |
- Anderzén-Carlsson, Agneta, 1966-, et al.
(författare)
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Fear in children with cancer : observations at an outpatient visit
- 2008
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Ingår i: Journal of Child Health Care. - London : Sage. - 1367-4935 .- 1741-2889. ; 12:3, s. 191-208
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Tidskriftsartikel (refereegranskat)abstract
- The aim of the study was to describe interactions within the family and between them and professionals on a routine visit at a paediatric oncology outpatient clinic where the visiting child was likely to be fearful. Observations were performed. Data were analysed by qualitative content analysis. The behaviours most frequently observed as expressing fear were being quiet, withdrawn or providing detailed descriptions of experiences. Within the theme `Recognition of the fear', an attentive attitude to the fear was traced; fear was confirmed and cooperation was seen. Although many efforts were made to meet the fear, this was not always successful. Within the theme `Lack of attention to the fear', the fear was not in focus due to parental worries and concerns about the child's health, and organizational disturbances. The results can serve as a basis for collegial reflections of how to handle fear in children with cancer.
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| 24. |
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| 25. |
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| 26. |
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| 27. |
- Anderzén-Carlsson, Agneta, 1966-, et al.
(författare)
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Medical yoga : another way of being in the world-A phenomenological study from the perspective of persons suffering from stress-related symptoms
- 2014
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - : Informa UK Limited. - 1748-2623 .- 1748-2631. ; 9
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Tidskriftsartikel (refereegranskat)abstract
- The prevalence of stress-related illness has grown in recent years. Many of these patients seek help in primary health care. Yoga can reduce stress and thus complements pharmacological therapy in medical practice. To our knowledge, no studies have investigated patients' experiences of yoga treatment in a primary health care setting or, specifically, the experiences of yoga when suffering from stress-related illness. Thus, the aim of the present study was to explore the meaning of participating in medical yoga as a complementary treatment for stress-related symptoms and diagnosis in a primary health care setting. This study has a descriptive phenomenological design and took place at a primary health care centre in Sweden during 2011. Five women and one man (43-51 years) participated. They were recruited from the intervention group (n = 18) in a randomized control trial, in which they had participated in a medical yoga group in addition to standard care for 12 weeks. Data were collected by means of qualitative interviews, and a phenomenological data analysis was conducted. The essential meaning of the medical yoga experience was that the medical yoga was not an endpoint of recovery but the start of a process towards an increased sense of wholeness. It was described as a way of alleviating suffering, and it provided the participants with a tool for dealing with their stress and current situation on a practical level. It led to greater self-awareness and self-esteem, which in turn had an implicit impact on their lifeworld. In phenomenological terms, this can be summarized as Another way of being in the world, encompassing a perception of deepened identity. From a philosophical perspective, due to using the body in a new way (yoga), the participants had learnt to see things differently, which enriched and recast their perception of themselves and their lives.
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| 28. |
- Anderzén-Carlsson, Agneta, 1966-, et al.
(författare)
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Parental experiences of providing skin-to-skin care to their newborn infant : Part 2: A qualitative meta-synthesis
- 2014
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - Järfälla, Sweden : Co-Action Publishing. - 1748-2623 .- 1748-2631. ; 9
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Forskningsöversikt (refereegranskat)abstract
- Aim: To synthesize and interpret qualitative research findings focusing on parental experiences of skin-to-skin care (SSC) for newborn infants.Background: SSC induces many benefits for newborn infants and their parents. Three meta-analyses have been conducted on physiological outcomes, but no previous qualitative meta-synthesis on parental experiences of SSC has been identified.Design: The present meta-synthesis was guided by the methodology described by Paterson and co-workers.Data sources: Four databases were searched, without year or language limitations, up until December 2013. Manual searches were also performed. The searches and subsequent quality appraisal resulted in the inclusion of 29 original qualitative papers from 9 countries, reporting experiences from 401 mothers and 94 fathers.Review methods: The meta-synthesis entails a meta-data analysis, analysis of meta-method, and meta-theory in the included primary studies. Based on the three analyses, the meta-synthesis represents a new interpretation of a phenomenon. The results of the meta-data analysis have been presented as a qualitative systematic review in a separate paper.Results: When synthesizing and interpreting the findings from the included analyses, a theoretical model of Becoming a parent under unfamiliar circumstances emerged. Providing SSC seems to be a restorative as well as an energy-draining experience. A supportive environment has been described as facilitating the restorative experience, whereas obstacles in the environment seem to make the provision of SSC energy-draining for parents. When the process is experienced as positive, it facilitates the growth of parental self-esteem and makes the parents ready to assume full responsibility for their child.Conclusion: The results show that SSC can be interpreted not only as a family-including and important health care intervention but also in terms of actually becoming a parent. The process of becoming a parent in this specific situation is influenced by external factors in three different levels; family and friends, community, and society at large. The descriptions of providing SSC are similar to what has previously been described as the natural process of becoming a mother or a father.
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| 29. |
- Anderzén-Carlsson, Agneta, 1966-, et al.
(författare)
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Parental experiences of providing skin-to-skin care to their newborn infant : Part 1: A qualitative systematic review
- 2014
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - Järfälla, Sweden : Co-action Publishing. - 1748-2623 .- 1748-2631. ; 9
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Forskningsöversikt (refereegranskat)abstract
- Aim: To describe parental experiences of providing skin-to-skin care (SSC) to their newborn infants.Background: SSC care for newborn infants has been reported to have positive physiological and psychological benefits to the infants and their parents. No systematic review regarding parental experiences has been identified.Design: In this first part of a meta-study, the findings of a systematic literature review on parental experience of SSC care are presented.Data sources: Four databases were searched, without year or language limitations, up until December 2013. Manual searches were performed in reference lists and in a bibliography of the topic.Review methods: After a quality-appraisal process, data from the original articles were extracted and analysed using qualitative content analysis.Results: The systematic and manual searches led to the inclusion of 29 original qualitative papers from nine countries, reporting experiences from 401 mothers and 94 fathers. Two themes that characterized the provision of SSC emerged: a restoring experience and an energy-draining experience.Conclusion: This review has added scientific and systematic knowledge about parental experiences of providing SSC. Further research about fathers’ experiences is recommended.
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| 30. |
- Anderzen-Carlsson, Agneta, 1966-, et al.
(författare)
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Qualitative matrix based analysis : a useful alternative for analyzing longitudinal data of children’s experiences
- 2020
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Konferensbidrag (refereegranskat)abstract
- Background: Previously, researchers have pointed out the importance of giving voice to children’s experiences of health care, as well to follow these experiences over time.Objective: To describe experiences of fear in 5-9 year-old children, related to having Acute Lymphoblastic Leukemia (ALL).Method: 3 girls and 10 boys participated in one to three interviews during their treatment period. The interviews were performed approximately two months after diagnosis, after one year and at the end of treatment (after 2.5 years). The data comprised 35 interviews in total, with an average length of 35 minutes. To capture the longitudinal perspective, a qualitative matrix methodology was adopted. First, individual matrices for each child was developed, where all narratives about their fears during the entire treatment period were inserted. Next, a cross-case matrix was developed, where all text from all the individual case-matrices were compiled for each time point. The general idea of the matrices was to visualize data, thus enabling the researchers to easier identify common patterns, between cases and over time. In this step, common fears experienced by the children were identified, and finally, summary cross-case matrices were created. These were used to summarize how many children who had experienced various fears at the three time points, during treatment.Results: Fear of needles was the most commonly reported fear. This fear was most prominent and most often reported at the start of treatment. For >50% of the children this fear remained at the end of treatment. Fear related to the physical changes caused by the ALL or treatment, on the other hand increased during the treatment period.Conclusion: The qualitative matrix based methodology was found to be useful when analyzing qualitative longitudinal interview-data from children with ALL. The analysis was quite manifest, which suited the data derived from young children.
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| 31. |
- Anderzén-Carlsson, Agneta, 1966-
(författare)
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Rädsla hos barn med cancer
- 2013
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Ingår i: Palliativ vård. - Lund : Studentlitteratur AB. - 9789144070964 ; , s. 299-311
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Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 32. |
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| 33. |
- Anderzen-Carlsson, Agneta, 1966-, et al.
(författare)
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The nursing contribution in facilitating health and well-being in parents and infants in neonatal skin-to-skin care
- 2013
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Konferensbidrag (refereegranskat)abstract
- Background: Qualitative research about parental experiences of skin-to-skin care (SSC) reveals that the provision of SSC is an important part of becoming a parent. It has, from the perspective of the parent been characterised as a restoring experience as well as an energy-draining activity.Aim: The aim of this presentation is to highlight some nursing contributions facilitating a successful SSC.Methods: From the results of a meta-study (1) including 24 qualitative papers from 7 countries, a number of energy-draining experiences were identified, related to factors that can be modified in order to achieve a more restoring and less energy-draining experience. Some of these factors will be discussed and nursing actions will be suggested in order to provide families with better support for SSC.Results: Nursing actions to support parents providing skin-to-skin care should focus on the following factors: - Surveiling a family friendly physical environment of the neonatal unit; provide space and privacy for families and reduce noise and “technology-stress” levels - Nurses should encourage and support parents to provide skin-to-skin care, without inflicting pressure or feelings of guilt. - Fathers need extra support to be confident in providing SSC. - The needs of the whole family, including siblings at home, should be taken into account.Conclusion: It is important for nurses to be aware that SSC can be experienced both as restorative and energy consuming and that nurses’ attitudes can influence the parental experience, and alongside with that the wellbeing of the infant. In order to apply a family centrered perspective nurses must evaluate interventions, such as SSC, from the perspective of the individual infant, as well as from the perspective of the family as a whole.
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| 34. |
- Arvidsson Lindvall, Mialinn, 1977-, et al.
(författare)
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Basic Body Awareness Therapy for patients with stroke : Experiences among participating patients and physiotherapists
- 2016
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Ingår i: Journal of Bodywork & Movement Therapies. - : Elsevier. - 1360-8592 .- 1532-9283. ; 20:1, s. 83-89
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Tidskriftsartikel (refereegranskat)abstract
- Background: After a stroke many patients have muscle weakness, spasticity and compromised sensation leading to decreased postural stability. Basic Body Awareness Therapy includes slow movements that challenge postural control.Aim: The aim was to describe experiences of 8 weeks of Basic Body Awareness Therapy from the perspective of both patients with stroke and physiotherapists.Method: This study had a qualitative design. Twenty-one patients and four physiotherapists were interviewed. The interviews were analysed using manifest and latent content analysis.Results: One overall theme emerged "Simple yet challenging" which was based on six categories: "Facing one's limitations", "Individualized movements", "A feeling of harmony", "Improved balance", "Integrated knowledge" and "Frustration and doubt". The patients described improvement in balance and stability, as well as increased wellbeing.Conclusion: The patients and physiotherapists related that Basic Body Awareness Therapy challenges balance but also provides an opportunity to reflect on the body.
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| 35. |
- Arvidsson Lindvall, Mialinn, 1977-, et al.
(författare)
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Experiences of living with balance limitations after first-ever stroke
- 2023
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Konferensbidrag (refereegranskat)abstract
- Background: Stroke is the leading cause of serious, long-term disability among adults. Balance control after stroke may be affected due to motor impairment such as muscle weakness, spasticity and impaired sensory function and also cognitive deficits may affect balance control. The balance limitations affect walking and independence in activities of daily living. Having good balance has been described as an important factor in outdoor walking and for participation in exercises. Studies in which persons with stroke describe their experience of balance in everyday life are scarce.Purpose: The aim of the present presentation is to describe experiences of living with balance limitations in everyday life after first-ever stroke.Methods: Twenty persons initially agreed to participate; however, one person later declined further participation, thus giving a sample size of 19 participants (10 females and 9 men), aged between 42-92 years. The inclusion criteria were: having had a first-ever stroke and having self-reported impaired balance, unaffected speech, independence in toileting and dressing, and walking ability indoors and outdoors with or without a walking aid. A qualitative data collection through individual interviews was conducted. Data was analysed by means of an inductive content analysis covering both the manifest and the latent content of the transcribed interviews.Results: The participants' experiences of balance and its influence in everyday life, are presented in two themes. The first theme “Feeling dizzy and unstable is a continuous challenge”, revolves around participants' descriptions of balance as a constant feeling of dizziness and unsteadiness. The second theme “Feeling trust and confidence despite dizziness and unsteadiness” is about perceived abilities and feelings of confidence about still being able to do things oneself, despite the dizziness and unsteadiness.Conclusion(s): All participants experienced the balance limitations as a continuous challenge in everyday life, yet they also felt trust and confidence and experienced that they still managed their everyday life. In future research it would be of interest to establish which strategies can make persons with stroke feel in balance in relation to fear of falling.Implications:In physical therapy practice, the experiences of balance limitations after stroke from the person with stroke add valuable information to various assessments. By asking the person about their abilities and challenges in daily living, rehabilitation interventions can be more individualized and based on the person's actual condition and their wishes and needs.
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| 36. |
- Arvidsson Lindvall, Mialinn, 1977-, et al.
(författare)
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"I can manage the challenge" : a qualitative study describing experiences of living with balance limitations after first-ever stroke
- 2021
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - : Co-Action Publishing. - 1748-2623 .- 1748-2631. ; 16:1
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: To describe experiences of living with balance limitations after first-ever stroke.Materials and methods: This study has a qualitative design, comprising interviews with 19 persons with first-ever stroke, ten women and nine men. Their mean age was 77 years and the mean time since stroke was 15 months. Stroke survivors who were able to walk outdoors with or without a walking aid and who were independent in toileting and dressing were invited to participate. Semi-structured individual interviews were performed. An inductive qualitative content analysis of the manifest and latent content was conducted.Results: The results are presented in two themes illustrating the latent content of the data, "Feeling dizzy and unstable is a continuous challenge" and "Feeling confidence despite dizziness and unsteadiness", and seven categories illustrating the manifest content: Limitations in daily life; Being emotionally affected; The need for physical support; Everything takes time; I can still manage; Feelings of acceptance; and Finding individual solutions.Conclusions: All participants experienced the balance limitations as a continuous challenge in their everyday life, yet they also felt confidence. They had to some degree adapted their activities and were able to manage their daily life.
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| 37. |
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| 38. |
- Arvidsson Lindvall, Mialinn, 1977-, et al.
(författare)
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LIVING WITH BALANCE LIMITATIONS AFTER FIRST-EVER STROKE
- 2020
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Ingår i: International Journal of Stroke. - : Wiley-Blackwell Publishing Asia. - 1747-4930 .- 1747-4949. ; 15:Suppl. 1, s. 257-257
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- Background: Stroke is the leading cause of serious, long-term disability among adults. Balance can be limited after stroke and the limitations affect walking and independence in activities of daily living. Having good balance has been described as an important factor in outdoor walking and for participation in exercises. Studies in which persons with stroke describe their experience of balance in everyday life are scarce.Aim: To describe experiences of living with balance limitations after first-ever stroke.Methods: A qualitative design, comprising interviews with 19 persons with first-ever stroke, ten women and nine men, aged between 42–92 years. Inclusion criteria were: having had a first-ever stroke and self-reported impaired balance, unaffected speech, independence in toileting and dressing, and walking ability indoors and outdoors with or without a walking aid. Data was analysed by means of an inductive content analysis covering both the manifest and the latent content of the transcribed interviews.Results: The results are presented in two themes illustrating the latent content of the data. “Feeling dizzy and unstable is a continuous challenge” revolves around participants’ descriptions of balance as a constant feeling of dizziness and unsteadiness. “Feeling trust and confidence despite dizziness and unsteadiness” is about perceived abilities and feelings of confidence about still being able to do things oneself, despite the dizziness and unsteadiness.Conclusion: All participants experienced the balance limitations as a continuous challenge in everyday life, yet they also felt trust and confidence and experienced that they still managed their everyday life.
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| 39. |
- Arvidsson Lindvall, Mialinn, 1977-
(författare)
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Physiotherapeutic perspectives on balance control after stroke : exercises, experiences and measures
- 2018
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim of this thesis was to investigate physiotherapeutic perspectives on balance after stroke, in terms of exercises, experiences and measurements. Study I was a pilot randomized controlled trial with 46 persons who had had a stroke, 24 of whom were included in the intervention group and 22 who were included in the control group. The intervention consisted of 8 weeks of body awareness therapy (BAT). There were no significant differences over time between the groups in the outcome measures of balance, walking, self-reported balance confidence and quality of life. Study II had a qualitative design using content analysis. Participants in the intervention group from Study I and the four physiotherapists who had been in charge of the BAT were interviewed. One overall theme emerged: "Simple yet challenging", which was based on six categories. Study III investigated the validity and test-retest reliability of the Six-Spot Step test (SSST), an instrument used to assess the ability to take load on each leg. A cross-sectional design with 81 persons who had had stroke was performed. The convergent validity was strong to moderate, and the test-retest reliability was good. In Study IV a mixed method design including both qualitative and quantitative data collection was used. The participants’ experiences of balance and its influence in everyday life were presented in two themes: "Feeling dizzy and unstable is a continuous challenge" and "Feeling trust and confidence despite dizziness and unsteadiness". Taken together, the different data sets provided complementary and confirmatory information about balance. All participants experienced the balance limitations as a continuous challenge in everyday life, yet they also felt trust and confidence.In summary, BAT can be a complement in physiotherapeutic stroke rehabilitation and the SSST can be used as a measuring instrument of walking balance in persons with stroke. Living with balance limitations was experienced as a challenge but the participants were still able to manage their everyday life and activities.
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| 40. |
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| 41. |
- Axelin, Anna, et al.
(författare)
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Neonatal intensive care nurses' perceptions of parental participation in infant pain management : a comparative focus group study
- 2015
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Ingår i: Journal of Perinatal & Neonatal Nursing. - Philadelphia, USA : Lippincott Williams & Wilkins. - 0893-2190 .- 1550-5073. ; 29:4, s. 363-374
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Tidskriftsartikel (refereegranskat)abstract
- This comparative focus group study explored nurses' experiences and perceptions regarding parental participation in infant pain management in the neonatal intensive care unit (NICU). A total of 87 nurses from 7 NICUs in Finland, Sweden, and the United States participated in focus-group interviews (n = 25). Data were analyzed using deductive and inductive thematic analysis. Nurses' experiences and perceptions varied considerably, from nurses being in control, to nurses sharing some control with parents, to nurse-parent collaboration in infant pain management. When nurses controlled pain management, parents were absent or passive. In these cases, the nurses believed this led to better pain control for infants and protected parents from emotional distress caused by infant pain. When nurses shared control with parents, they provided information and opportunities for participation. They believed parent participation was beneficial, even if it caused nurses or parents anxiety. When nurses collaborated with parents, they negotiated the optimal pain management approach for an individual infant. The collaborative approach was most evident for the nurses in the Swedish NICUs and somewhat evident in the NICUs in Finland and the United States. Further research is needed to address some nurses' perceptions and concerns and to facilitate greater consistency in the application of evidence-based best practices.
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| 42. |
- Björk, Maria, et al.
(författare)
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The consequences of deafblindness rules the family : Parents' lived experiences of family life when the other parent has deafblindness
- 2022
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Ingår i: The British Journal of Visual Impairment. - : Sage Publications. - 0264-6196 .- 1744-5809. ; 40:1, s. 18-28
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Tidskriftsartikel (refereegranskat)abstract
- Deafblindness is a combined vision and hearing disability that restricts communication, access to information, and mobility, thus limiting a person's activities and full participation in society. Literature on how this might affect the lives of family members is sparse. The aim of this study is to describe the lived experience of family life from the perspective of one parent when the other has deafblindness. Six partners of deafblind parents, four men and two women, agreed to participate. Three were deaf and communicated in Swedish sign language. Qualitative interviews were conducted and analysed using interpretative phenomenological analysis. Seven themes were identified during the analysis. When one parent has deafblindness, communication within the family and with people outside the family is affected. The non-deafblind partners tried to integrate deafblindness into everyday family life and constantly strove to compensate for the losses caused by deafblindness. They tried to enhance participation and engagement in everyday family life for the parent with deafblindness by facilitating communication and taking a greater part in some areas of their shared responsibilities at home. The results reveal that these partners often put themselves in second place. They and their families needed support to manage family life. Deafblindness affects the life of the entire family, and the non-deafblind partner has to take considerable responsibility for everyday life. Everyday life can be facilitated by an adapted environment and appropriate support, which should be offered to the entire family.
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| 43. |
- Bäck, Anna-Karin, 1971-, et al.
(författare)
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Troubled but in good hands : A qualitative study on patient experiences in diuresis renography examinations
- 2024
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Ingår i: Radiography. - : Elsevier. - 1078-8174 .- 1532-2831.
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Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION: Diuresis renography is a nuclear medicine examination that can distinguish between obstructive and non-obstructive uropathy. Renography has been investigated before, but not from a patient perspective. The aim of this study was to gain knowledge and understanding of patient experiences with the diuresis renography process.METHODS: The study had a qualitative descriptive design; data was collected through semi-structured interviews with 17 adult patients that had recently undergone diuresis renography. The transcripts were analysed using inductive qualitative content analysis to identify their manifest and latent content.RESULTS: One main theme was identified: 'Not smooth all the way through, but still in good hands'. The participants understood the necessity of the performed renography and endured the examination despite its worrying elements. They were bothered by diuretic effects, worried about radioactivity and felt isolated during the imaging. The technologists' caring and informative approach eased their experience. The main theme was identified from three subthemes: 'I experienced inconvenience', 'I was worried' and 'I felt safe'.CONCLUSION: The participants experienced worry throughout the renography process but were still satisfied with the examination, mostly because of the technologists being involved. Communication and interaction between patient and technologist are important for creating a good experience. Improved knowledge of patient experiences during renographies could be used to develop patient information and increase technologists' awareness of factors patients may experience as troubling.IMPLICATIONS FOR PRACTICE: This study describes issues that contribute to both negative and positive experiences. Improved professional awareness and knowledge about these issues can contribute to the development of patient information and professional encounters, and may improve patients' compliance and overall experience.
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| 44. |
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| 45. |
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| 46. |
- Ehn, Mattias, 1972-, et al.
(författare)
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Life strategies of people with deafblindness due to Usher syndrome type 2a-a qualitative study
- 2019
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - : Taylor & Francis. - 1748-2623 .- 1748-2631. ; 14:1
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: To explore life strategies in people with Usher syndrome type 2a.Background: There are no studies on life strategies in people with Usher syndrome. People with deafblindness are often described in terms of poor health and low quality of life, or as being vulnerable. From a clinical point of view, it is of importance to balance this picture, with an increased knowledge of life strategies.Methods: The study had a qualitative explorative design. Fourteen people aged 20-64 years (4 women, 10 men) with USH2a in Sweden participated in focus group interviews, which were transcribed and analysed by qualitative content analysis.Results: The content analysis resulted in seven categories; remaining active, using devices, using support, sharing knowledge, appreciating the present, maintaining a positive image and alleviating emotional pain. Two sub-themes: resolve or prevent challenges and comforting oneself was abstracted forming a theme "being at the helm".Conclusion: The findings show that people with USH2a have a variety of life strategies that can be interpreted as highlighting different aspects of psychological flexibility in a life adjustment process. The study demonstrates that people with USH2a manage in many ways, and metaphorically, by "taking the helm", they strive to actively navigate towards their own chosen values.
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| 47. |
- Ehn, Mattias, 1972-
(författare)
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Life Strategies, Work and Health in People with Usher Syndrome
- 2020
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: People with Usher syndrome (USH) have an inherited disorder causing congenital deafness or hearing loss combined with progressive vision loss and, in some cases, balance problems. Previous research has shown that people with USH have poor physical and psychological health. Research has, however, demonstrated that there are in-group health differences that have not yet been explored and that there is a lack of studies on life strategies as well as health in relation to working life.Aim: The aim was to explore the relationship between work and health in people with USH1 and 2 and to explore the experiences of life strategies in people with USH 2.Methods: A quantitative and a qualitative explorative design was employed comprising two cross-sectional studies of the relationship between work and health in people with USH2 (n=67) and USH1 (n=47). The third study, of life strategies, comprised focus group interviews with people with USH2a (n=14) analyzed by content analysis. The fourth study explored the lived experiences of working life by interviewing people with USH2 (n=7) using an interpretative phenomenological approach.Results: Study 1 and 2 demonstrated significant differences in health between working and nonworking people. Nonworking people showed significantly poorer health. In study 3, a variety of strategies to prevent and resolve challenges in life, as well as to comfort oneself was identified. The lived experiences of working life in people with USH2 (study 4) disclosed feelings of satisfaction, striving towards a work life balance. Work also disclosed feelings of limitations and uncertainty about the future.Conclusion: The results, which are discussed in relation to the Meikirsh model of health, demonstrated a complexity. Individual life strategies, psychological flexibility and environmental aspects, such as social determinants have to be considered to receive a comprehensive picture of the relationship between work and health in people with USH. This thesis provides new insights into the health of people with USH.
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| 48. |
- Ehn, Mattias, 1972-, et al.
(författare)
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The lived experiences of work and health of people living with deaf-blindness due to Usher syndrome type 2
- 2020
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - : Co-Action Publishing. - 1748-2623 .- 1748-2631. ; 15:1
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: This study aimed to explore lived experiences with working life from the perspective of people with deafblindness due to Usher syndrome type 2 (USH2).Background: A limited number of studies have explored working life of people with Usher syndrome. One study of individuals with USH2 showed that work active reported significantly better psychological health compared to non-working individuals.Methods: Seven participants aged 38-50 years with USH2 participated in interviews analysed by interpretative phenomenological analysis.Results: The analyses yielded four themes showing that work is a source of satisfaction and a commitment that needs to be balanced. It is also associated with facing limitations and feelings of uncertainty.Conclusion: Based on the psychology of work model we have demonstrated that work is associated with social connectedness, self-determination and a source of improved health outcomes. There are however also potential health hazards in people with USH2, indicating a need for balance between individual needs and resources, and an adapted environment, for maintaining or regaining health for actively working people with USH2.
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| 49. |
- Eriksson, Mats, 1959-, et al.
(författare)
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Becoming a parent under unfamiliar circumstances : restorative and energy-draining experiences of skin-to-skin care
- 2015
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Konferensbidrag (refereegranskat)abstract
- Aim: The aim was to synthesize and interpret findings from the body of research on parental experiences of SSC.Methods: Four databases were searched, without language limitations, up until December 2013. Manual searches were also performed. After a quality-appraisal process, data from the original articles were extracted. The meta-study comprised a meta-analysis, using qualitative content analysis, and subsequently an analysis of meta-method, and meta-theory, and finally the meta-synthesis.Results: 29 original qualitative papers from 9 countries, reporting experiences from 401 mothers and 94 fathers were included. When synthesizing and interpreting the findings from the included analyses, a theoretical model of Becoming a parent under unfamiliar circumstances emerged. Providing SSC seems to be a restorative as well as an energy-draining experience. A supportive environment has been described as facilitating the restorative experience, whereas obstacles in the environment seem to make the provision of SSC energy-draining for parents. When the process is experienced as positive, it facilitates the growth of parental self-esteem and makes the parents ready to assume full responsibility for their childConclusion: The results show that SSC can be interpreted not only as a family-including and important health care intervention but also in terms of actually becoming a parent. The process of becoming a parent in this specific situation is influenced by external factors in three different levels; family and friends, community, and society at large. The descriptions of providing SSC are similar to what has previously been described as the natural process of becoming a mother or a father.
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