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  • 1. Aanesen, Arthur
    et al.
    Westerbotn, Margareta
    Sophiahemmet Högskola.
    Prospective study of a Swedish infertile cohort 2005-08: population characteristics, treatments and pregnancy rates2014Inngår i: Family Practice, ISSN 0263-2136, E-ISSN 1460-2229, Vol. 31, nr 3, 290-7 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: We here report on results from a prospective study comprising 380 infertile couples undergoing infertility work-up and various treatments for infertility in our clinic. The aim was to investigate the overall birth rate as a result of different treatments, as well as spontaneous pregnancies.

    METHODS: Three hundred and eighty couples were consecutively included between December 2005 and May 2008. All couples underwent a fertility work-up, including hysterosalpingogram, hormonal characterization, clinical examination, screening for infectious diseases and semen analysis. The mean age of the women at the time of inclusion was 33.2 years. The mean duration of infertility prior to inclusion was 1.8 years. And 46.6% (n = 177) of the women had been pregnant prior to their first visit to the clinic and 30.0% (n = 114) had been pregnant earlier in their present relationship.

    RESULTS: As of November 2010, 57.3% (n = 218) of the women had given birth to a child when they were lost to follow up by the study. Spontaneous conception was observed in 11.3% (n = 43) of the women, 14.5% (n = 64) conceived after intrauterine insemination (IUI), 4.2% (n = 16) conceived after ovarian hyperstimulation and ovulation induction (OH/OI) and 28.4% (n = 113) after in vitro fertilization. There were 280 pregnancies and 58 spontaneous abortions (22.3%) in the group. Mean anti-mullerian hormone significantly correlated with antral follicle count and age and was significantly higher in the subgroup that became pregnant after IUI.

    CONCLUSIONS: Spontaneous pregnancies and IUI + OH/OI contributed significantly to the pregnancies observed in the total population. Predictive factors for pregnancy were anti-mullerian hormone in the group undergoing IUI treatment and in the age group ≥38-duration of infertility. Previous pregnancies, body mass index, estradiol, follicle stimulating hormone or having given birth prior to the infertility period were not predictive of pregnancy for the infertile couples in this study.

  • 2.
    Akselsson, Anna
    et al.
    Sophiahemmet Högskola.
    Georgsson, Susanne
    Sophiahemmet Högskola.
    Lindgren, Helena
    Pettersson, Karin
    Rådestad, Ingela
    Sophiahemmet Högskola.
    Women's attitudes, experiences and compliance concerning the use of Mindfetalness- a method for systematic observation of fetal movements in late pregnancy2017Inngår i: BMC Pregnancy and Childbirth, ISSN 1471-2393, E-ISSN 1471-2393, Vol. 17, nr 1, 359Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: Maternal perception of decreased fetal movements and low awareness of fetal movements are associated with a negative birth outcome. Mindfetalness is a method developed for women to facilitate systematic observations of the intensity, character and frequency of fetal movements in late pregnancy. We sought to explore women's attitudes, experiences and compliance in using Mindfetalness.

    METHODS: We enrolled 104 pregnant women treated at three maternity clinics in Stockholm, Sweden, from February to July of 2016. We educated 104 women in gestational week 28-32 by providing information about fetal movements and how to practice Mindfetalness. Each was instructed to perform the assessment daily for 15 min. At each subsequent follow-up, the midwife collected information regarding their perceptions of Mindfetalness, and their compliance. Content analyses, descriptive and analytic statistics were used in the analysis of data.

    RESULTS: Of the women, 93 (89%) were positive towards Mindfetalness and compliance was high 78 (75%). Subjective responses could be binned into one of five categories: Decreased worry, relaxing, creating a relationship, more knowledge about the unborn baby and awareness of the unborn baby. Eleven (11%) women had negative perceptions of Mindfetalness, citing time, and the lack of need for a method to observe fetal movements as the most common reasons.

    CONCLUSION: Women in late pregnancy are generally positive about Mindfetalness and their compliance with daily use is high. The technique helped them to be more aware of, and create a relationship with, their unborn baby. Mindfetalness can be a useful tool in antenatal care. However, further study is necessary in order to determine whether the technique is able to reduce the incidence of negative birth outcome.

  • 3. Al-Ani, Amer N
    et al.
    Samuelsson, Bodil
    Sophiahemmet Högskola.
    Tidermark, Jan
    Norling, Asa
    Ekström, Wilhelmina
    Cederholm, Tommy
    Hedström, Margareta
    Early operation on patients with a hip fracture improved the ability to return to independent living:  a prospective study of 850 patients2008Inngår i: The Journal of Bone and Joint Surgery. American volume, ISSN 1535-1386, Vol. 90, nr 7, 1436-42 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: The outcome for many patients with a hip fracture remains poor. The aim of the present study was to investigate whether the timing of surgery in such patients could influence the short-term clinical outcome. METHODS: We included 850 consecutive patients with a hip fracture who were admitted to the hospital during one year in a prospective study. Three cutoff limits for a comparison of early and late operation were defined. The outcome (the ability to return to independent living, risk for the development of pressure ulcers, length of the hospital stay, and mortality rate) for patients who had an operation within twenty-four, thirty-six, and forty-eight hours was compared with the outcome for those who had an operation at a later time. RESULTS: Patients who had the operation more than thirty-six and forty-eight hours after admission were less likely to return to independent living within four months (odds ratio, 0.44 and 0.33, respectively), whereas there was no significant difference with use of the twenty-four-hour cutoff limit. The incidence of pressure ulcers in the groups that had the operation later was increased at all three cutoff limits (a delay of more than twenty-four hours, more than thirty-six hours, and more than forty-eight hours) (odds ratio, 2.19, 3.42, and 4.34, respectively). The length of hospitalization was also increased in the groups that had the later operation (median, fourteen compared with eighteen days, fifteen compared with nineteen days, and fifteen compared with twenty-one days, respectively) (p < 0.001 for all comparisons). The importance of surgical timing remained significant after adjusting for several possible confounders (p < 0.05). CONCLUSIONS: Early compared with late operative treatment of patients with a hip fracture is associated with an improved ability to return to independent living, a reduced risk for the development of pressure ulcers, and a shortened hospital stay.

  • 4. Alasiry, Sharifa
    et al.
    Löfvenmark, Caroline
    Sophiahemmet Högskola.
    Nurses' perceptions of pain assessment and pain management for patients with myocardial infarction in a coronary care unit2013Inngår i: Middle East Journal of Nursing, ISSN 1834-8750 (e-ISSN), 1834-8742 (print), Vol. 7, nr 5, 9-22 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: Pain is one of the most common medical problems that occur in hospitals; in spite of its incidence, there are many patients who suffer with untreated pain. Unrelieved pain can negatively impact a person's quality of life, causing activity life disturbances like psychological distress; anxiety, depression and lack of sleep. Cardiovascular disorder is a significant global health problem, which accounts for the death of a third of people of the world. Chest pain is the most common symptom of heart attacks. However, some patients will present with pain in other areas like pain in arm, shoulder, neck, teeth, jaw and back pain. In literature there is little observational research to investigate actual pain assessment and management practices of critical care nurses in routine clinical practice for patients with myocardial infarction. Aim:The aim of this study was to explore nurses' perceptions regarding pain assessment and pain management for patients with Myocardial Infarction in a coronary care unit.

    Methodology: The study was a qualitative design, using semi structured interviews. Ten critical care nurses who work in a coronary care unit were interviewed. The author used a qualitative content analysis approach to analyze the interviews by doing the manual analyzing and having different themes.Result: Three main themes were indentified in this study and each theme had different categories which are presented as the following: Dealing with patients who have myocardial infarction pain is challenging; there are different approaches in pain assessment including subjective and the third theme is Holistic approaches to pain management.

    Conclusion: Critical care nurses need more skills and knowledge to practice good pain assessment and effective pain management when they deal with patients who have myocardial infarction pain. In this study patients who do not verbalized their pain lack the proper assessment of pain due to inability to communicate their pain. More research is needed in this area of pain assessment and management especially for patients with myocardial infarction.

  • 5.
    Alayed, Abdulrahman S.
    et al.
    Sophiahemmet Högskola.
    Lööf, Helena
    Sophiahemmet Högskola.
    Johansson, Unn-Britt
    Sophiahemmet Högskola.
    Saudi Arabian ICU safety and nurses' attitudes2014Inngår i: International Journal of Health Care Quality Assurance, ISSN 0952-6862, E-ISSN 1758-6542, Vol. 27, nr 7, 581-593 s.Artikkel i tidsskrift (Fagfellevurdert)
  • 6. Alinasab, Babak
    et al.
    Qureshi, Abdul Rashid
    Sophiahemmet Högskola.
    Stjärne, Pär
    Prospective study on ocular motility limitation due to orbital muscle entrapment or impingement associated with orbital wall fracture2017Inngår i: Injury, ISSN 0020-1383, E-ISSN 1879-0267, Vol. 48, nr 7, 1408-1416 s., S0020-1383(17)30268-1Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    INTRODUCTION: The recommended urgent surgical management of ocular motility restriction due to orbital muscle entrapment or impingement associated with orbital wall fracture needs to be elucidated.

    AIM: To evaluate the importance of the time from injury to surgery for the outcome in ocular motility and diplopia, the time lapse of ocular motility, diplopia and hypesthesia recovery.

    MATERIAL AND METHODS: Patients with entrapment or impingement of orbital contents due to orbital wall fracture were followed up prospectively over 1year regarding ocular motility, diplopia, hypesthesia and cosmetic deformity.

    RESULTS: 21 patients (10 entrapments and 11 impingements) were included and treated surgically. The median time from injury to surgery was 36 (8-413)h for the entrapment group and 168 (48-326)h for the impingement group. The median time from study inclusion to surgery was 0 (0-1) days for the entrapment group and 1.0 (0.2-4.8) days for the impingement group. All the patients had ocular motility limitation and diplopia at the inclusion. Ocular motility improved gradually and was normal at final visit. Diplopia resolved gradually in all patients except in two with non-disturbing diplopia, at the final visit. Forced duction test was positive in 90% of the patients in the entrapment group and 70% in impingement group. At final visit, hypesthesia was found in none of the patients in the entrapment group but in 4 patients in the impingement group.

    CONCLUSIONS: In this, the first prospective long term follow up of orbital wall fractures with ocular motility restriction, we did not find any significant correlation between the time from injury to surgery and the outcomes in ocular motility and diplopia. An entrapment requires surgery as soon as possible; however, the surgical reduction is at least as important as surgical timing. Surgery should be delayed until it can be performed by an experienced surgeon. Ocular motility restriction causing diplopia due to impingement is not an ophthalmologic emergency and surgery is recommended if the diplopia and ocular motility has not improved over time. Clinical examination of ocular motility and not CT scan findings is crucial to determine whether a limitation of ocular motility exists or not.

  • 7.
    Alshaikh, Zahra
    et al.
    Sophiahemmet Högskola.
    Alkhodari, Mohammed
    Sophiahemmet Högskola.
    Sormunen, Taina
    Sophiahemmet Högskola.
    Hillerås, Pernilla
    Sophiahemmet Högskola.
    Nurses' knowledge about palliative care in an intensive care unit in Saudi Arabia2015Inngår i: Middle East Journal of Nursing, ISSN 1834-8742, Vol. 9, nr 1, 7-13 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: Most patients die in hospital settings either in intensive care unit (ICU), emergency department (ED) or other departments. In Saudi Arabia, approximately 23,000 persons are diagnosed with cancer every year. According to the World Health Organization (WHO), palliative care is a holistic activity that involves physical, psychosocial and spiritual human needs to enhance quality of life for patients and their families. Palliative care is an essential aspect to be applied for patients with chronic diseases to improve their quality of life. Earlier studies have shown that physicians, nurses and nurse assistants who work in long-term care settings lack the knowledge to enforce palliative care principles due to lack of education. According to the WHO, health care professionals should be educated and trained to apply palliative care.Aim: The aim of this study was to explore nurses' knowledge about palliative care in an intensive care unit in Saudi Arabia. Method: Eight individual qualitative semi-structured interviews were conducted. Interviews were audiotaped and transcribed verbatim. Manifest content analysis was used to analyze the data. Results: The palliative care concept was not familiar for most ICU nurses but it was applied in their daily work. Most nurses provided physical care at the end of life to keep the body intact. Some nurses highlighted that dying patients did not feel pain to be treated and did not have emotions to be supported.Conclusions: Nurses had insufficient knowledge of palliative care and how to apply it in ICU setting. The provision of additional education in palliative care is recommended in order to improve the knowledge of palliative care among nurses.

  • 8.
    Alshehri, Badryah
    et al.
    Sophiahemmet Högskola.
    Klarare Ljungberg, Anna
    Sophiahemmet Högskola.
    Rüter, Anders
    Sophiahemmet Högskola.
    Medical-surgical nurses' experiences of calling a rapid response team in a hospital setting: a literature review2015Inngår i: Middle East Journal of Nursing, ISSN 1834-8742, Vol. 9, nr 3, 3-23 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: The rapid response team (RRT) decreases rates of mortality and morbidity in hospital and decreases the number of patient readmissions to the intensive care unit. This team helps patients before they have any signs of deterioration related to cardiac or pulmonary arrest. The aim of the RRT is to accelerate recognition and treatment of a critically ill patient. In addition, in order to be ready to spring into action without delay, the RRT must be on site and accessible, with good skills and training for emergency cases. It has been reported that many hospitals are familiar with the concept of RRTs. There is a difference between this team and a cardiac arrest team, since the RRT intervenes before a patient experiences cardiac or respiratory arrest.

    Aim: To describe current knowledge about medical-surgical nurses' experiences when they call an RRT to save patients' lives.

    Method: The method used by the author was a literature review. The PubMed search database was used and 15 articles were selected, all of which were primary academic studies. Articles were analysed and classified according to specified guidelines; only articles of grades I and II were included.

    Results: Years of experience and qualifications characterise the ability of a medical-surgical nurse to decide whether or not to call the RRT. Knowledge and skills are also important; some hospitals provide education about RRTs, while others do not. Teamwork between bedside nurses and RRTs is effective in ensuring quality care. There are some challenges that might affect the outcome of patient care: The method of communication is particularly important in highlighting what nurses need RRTS to do in order to have fast intervention.

    Conclusion: Medical-surgical nurses call RRTs to help save patients' lives, and depend on their experience when they call RRTs. Both medical-surgical nurses and RRTs need to collaborate during the delivery of care to the patient. Good knowledge and communication skills are important in delivering fast intervention to a critically ill patient, so that deteriorating clinical signs requiring intervention can be identified.

  • 9.
    Amsberg, Susanne
    et al.
    Sophiahemmet Högskola.
    Anderbro, Therese
    Sophiahemmet Högskola.
    Wredling, Regina
    Sophiahemmet Högskola.
    Lisspers, Jan
    Lins, Per-Eric
    Adamson, Ulf
    Johansson, Unn-Britt
    Sophiahemmet Högskola.
    A cognitive behavior therapy-based intervention among poorly controlled adult type 1 diabetes patients: a randomized controlled trial2009Inngår i: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 77, nr 1, 72-80 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    OBJECTIVE: To examine the impact of a Cognitive Behavior Therapy (CBT)-based intervention on HbA(1c), self-care behaviors and psychosocial factors among poorly controlled adult type 1 diabetes patients. METHODS: Ninety-four type 1 diabetes patients were randomly assigned to either an intervention group or a control group. The intervention was based on CBT and was mainly delivered in group format, but individual sessions were also included. All subjects were provided with a continuous glucose monitoring system (CGMS) during two 3-day periods. HbA(1c), self-care behaviors and psychosocial factors were measured up to 48 weeks. RESULTS: Significant differences were observed with respect to HbA(1c) (P<0.05), well-being (P<0.05), diabetes-related distress (P<0.01), frequency of blood glucose testing (P<0.05), avoidance of hypoglycemia (P<0.01), perceived stress (P<0.05), anxiety (P<0.05) and depression (P<0.05), all of which showed greater improvement in the intervention group compared with the control group. A significant difference (P<0.05) was registered with respect to non-severe hypoglycemia, which yielded a higher score in the intervention group. CONCLUSION: This CBT-based intervention appears to be a promising approach to diabetes self-management. PRACTICE IMPLICATIONS: Diabetes care may benefit from applying tools commonly used in CBT. For further scientific evaluation in clinical practice, there is a need for specially educated diabetes care teams, trained in the current approach, as well as cooperation between diabetes care teams and psychologists trained in CBT.

  • 10.
    Amsberg, Susanne
    et al.
    Sophiahemmet Högskola.
    Anderbro, Therese
    Sophiahemmet Högskola.
    Wredling, Regina
    Sophiahemmet Högskola.
    Lisspers, Jan
    Lins, Per-Eric
    Adamson, Ulf
    Johansson, Unn-Britt
    Sophiahemmet Högskola.
    Experience from a behavioural medicine intervention among poorly controlled adult type 1 diabetes patients2009Inngår i: Diabetes research and clinical practice, ISSN 1872-8227, Vol. 84, nr 1, 76-83 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    AIM: To describe experience from a behavioural medicine intervention among poorly controlled adult type 1 diabetes patients, in terms of feasibility, predictors and associations of improved glycaemic control. METHODS: Data were collected on 94 poorly controlled adult type 1 diabetes patients who were randomised to a study evaluating the effects of a behavioural medicine intervention. Statistics covered descriptive and comparison analysis. Backward stepwise regression models were used for predictive and agreement analyses involving socio-demographic and medical factors, as well as measures of diabetes self-efficacy (DES), diabetes locus of control (DLOC), self-care activities (SDSCA), diabetes-related distress (Swe-PAID-20), fear of hypoglycaemia (HFS), well-being (WBQ), depression (HAD) and perceived stress (PSS). RESULTS: The participation rate in the study was 41% and attrition was 24%. Of those patients actually participating in the behavioural medicine intervention, 13% withdrew. From the regression models no predictors or associations of improvement in HbA(1c) were found. CONCLUSIONS: The programme proved to be feasible in terms of design and methods. However, no clear pattern was found regarding predictors or associations of improved metabolic control as the response to the intervention. Further research in this area is called for.

  • 11.
    Amsberg, Susanne
    et al.
    Sophiahemmet Högskola.
    Wredling, Regina
    Sophiahemmet Högskola.
    Lins, Per-Eric
    Adamson, Ulf
    Johansson, Unn-Britt
    Sophiahemmet Högskola.
    The psychometric properties of the Swedish version of the Problem Areas in Diabetes Scale (Swe-PAID-20): scale development2008Inngår i: International Journal of Nursing Studies, ISSN 0020-7489, E-ISSN 1873-491X, Vol. 45, nr 9, 1319-28 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: Considering the importance of psychological aspects in the management of diabetes, there is a need of validated measurements in this area. Such tools make it possible to screen patients for specific conditions as well as they serve as reliable measures when evaluating medical, psychological and educational interventions. OBJECTIVES: The current study was conducted to adapt the Problem Areas in Diabetes Scale for use among Swedish-speaking patients with type 1 diabetes and to evaluate the psychometric properties. DESIGN: Methodological research design was used in this study. SETTING AND PARTICIPANTS: A convenience sample of 325 type 1 diabetes patients was systematically selected from the local diabetes registry of a university hospital in Stockholm, Sweden. METHODS: Following the linguistic adaptation using the forward-backward translation method, the 20-item PAID was answered by the selected patients. Statistics covered exploratory factor analysis, Cronbach's alpha, convergent validity and content validity. RESULTS: In the factor analysis a three-factor solution was found to be reasonable with the sub-dimensions diabetes-related emotional problems (15 items), treatment-related problems (2 items) and support-related problems (3 items). Cronbach's alpha coefficient for the total score was 0.94 and varied between 0.61 and 0.94 in the three subscales. The findings also gave support for the convergent and content validity. CONCLUSIONS: The Swedish version of the Problem Areas in Diabetes Scale (Swe-PAID-20) seems to be a reliable and valid outcome for measuring diabetes-related emotional distress in type 1 diabetes patients.

  • 12. Ancker, Thérèse
    et al.
    Gebhardt, Anja
    Andreassen, Sissel
    Sophiahemmet Högskola.
    Botond, Agnes
    Sophiahemmet Högskola.
    Tidig förlust: kvinnors upplevelse av missfall2012Inngår i: Vård i Norden, ISSN 0107-4083, E-ISSN 1890-4238, Vol. 32, nr 1, 32-36 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Up to 15 percent of all diagnosed pregnancies end in miscarriage. The loss can cause deep sorrow with complex emotional reactions as a result. Research shows that women often feel alone with their experiences of miscarriage and experience a wide range of emotions. The aim of this study was to describe the mourning woman’s experiences of early miscarriage. Six women who repeatedly had undergone miscarriage at a desired pregnancy were interviewed. The interviews were semi structured and analyzed with qualitative content analysis. The findings show that the miscarriages significantly affected the women’s life. Several psychological needs were identified, of which the most important were the need to feel unconditionally understood and having people at their side who attentively listen, provide security and respect their loss. These needs were rarely met in a satisfactory manner in health care. Regarding the women’s strong emotional reactions, it is desirable to have a routinely scheduled follow-up in which the women’s entire experience of the miscarriage is taken into consideration.

  • 13.
    Anderbro, Therese
    et al.
    Sophiahemmet Högskola.
    Amsberg, Susanne
    Sophiahemmet Högskola.
    Wredling, Regina
    Sophiahemmet Högskola.
    Lins, Per-Eric
    Adamson, Ulf
    Lisspers, Jan
    Johansson, Unn-Britt
    Sophiahemmet Högskola.
    Psychometric evaluation of the Swedish version of the Hypoglycaemia Fear Survey2008Inngår i: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 73, nr 1, 127-31 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    OBJECTIVE: The objective of this study was to evaluate the psychometric properties of the Swedish version of the Hypoglycaemia Fear Survey (Swe-HFS) for use among Swedish-speaking patients with type 1 diabetes. METHODS: The HFS was translated using the forward-backward translation method and was thereafter answered by 325 type 1 patients. The psychometric properties were investigated using exploratory factor analysis, Cronbach's alpha, content and convergent validity. RESULTS: The factor analysis showed that a three-factor solution was reasonable with the subscales Behaviour/Avoidance (10 items), Worry (6 items) and Aloneness (4 items). Cronbach's alpha coefficient for the total score was 0.85. The result also supports the instrument's content validity and convergent validity. CONCLUSION: The Swedish version of the HFS appears to be a reliable and valid instrument for measuring fear of hypoglycaemia (FoH) in type 1 patients. PRACTICE IMPLICATIONS: The results from this study suggest that the Swe-HFS, an instrument that is brief and easy to administer, may be valuable in clinically assessing FoH among patients with type 1 diabetes.

  • 14.
    Anderbro, Therese
    et al.
    Sophiahemmet Högskola.
    Bolinder, J
    Lins, P-E
    Wredling, Regina
    Moberg, E
    Lisspers, J
    Johansson, Unn-Britt
    Sophiahemmet Högskola.
    The role of emotional and psychosocial factors in relation to fear of hypoglycemia in adults with type 1 diabetesArtikkel i tidsskrift (Fagfellevurdert)
  • 15. Anderbro, Therese
    et al.
    Gonder-Frederick, Linda
    Bolinder, Jan
    Lins, Per-Eric
    Wredling, Regina
    Moberg, Erik
    Lisspers, Jan
    Johansson, Unn-Britt
    Sophiahemmet Högskola.
    Fear of hypoglycemia: relationship to hypoglycemic risk and psychological factors2014Inngår i: Acta Diabetologica, ISSN 0940-5429, E-ISSN 1432-5233Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    OBJECTIVE: The major aims of this study were to examine (1) the association between fear of hypoglycemia (FOH) in adults with type 1 diabetes with demographic, psychological (anxiety and depression), and disease-specific clinical factors (hypoglycemia history and unawareness, A1c), including severe hypoglycemia (SH), and (2) differences in patient subgroups categorized by level of FOH and risk of SH.

    RESEARCH DESIGN AND METHODS: Questionnaires were mailed to 764 patients with type 1 diabetes including the Swedish translation of the Hypoglycemia Fear Survey (HFS) and other psychological measures including the Perceived Stress Scale, Hospital Anxiety and Depression Scale, Anxiety Sensitivity Index, Social Phobia Scale, and Fear of Complications Scale. A questionnaire to assess hypoglycemia history was also included and A1c measures were obtained from medical records. Statistical analyses included univariate approaches, multiple stepwise linear regressions, Chi-square t tests, and ANOVAs.

    RESULTS: Regressions showed that several clinical factors (SH history, frequency of nocturnal hypoglycemia, self-monitoring) were significantly associated with FOH but R (2) increased from 16.25 to 39.2 % when anxiety measures were added to the model. When patients were categorized by level of FOH (low, high) and SH risk (low, high), subgroups showed significant differences in non-diabetes-related anxiety, hypoglycemia history, self-monitoring, and glycemic control.

    CONCLUSION: There is a strong link between FOH and non-diabetes-related anxiety, as well as hypoglycemia history. Comparison of patient subgroups categorized according to level of FOH and SH risk demonstrated the complexity of FOH and identified important differences in psychological and clinical variables, which have implications for clinical interventions.

  • 16.
    Andersson, Helene
    et al.
    Sophiahemmet Högskola.
    Andreassen Gleissman, Sissel
    Sophiahemmet Högskola.
    Lindholm, Christina
    Sophiahemmet Högskola.
    Fossum, Bjöörn
    Sophiahemmet Högskola.
    Experiences of nursing staff caring for patients with methicillin-resistant Staphylococcus aureus.2016Inngår i: International Nursing Review, ISSN 0020-8132, E-ISSN 1466-7657, Vol. 63, nr 2, 233-241 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: Methicillin-resistant Staphylococcus aureus is a resistant variant of S. aureus and can cause pneumonia, septicaemia and, in some cases, death. Caring for patients with antibiotic resistant bacteria is a challenge for healthcare personnel. There is a risk of spreading the bacteria among patients and of healthcare personnel being infected themselves.

    AIM: To describe nursing staffs' experiences of caring for patients with methicillin-resistant S. aureus in Sweden.

    METHOD: A descriptive qualitative approach was used and 15 nurses from different hospitals and care units, including emergency and geriatric wards and nursing homes in Stockholm, were interviewed. All nurses had been involved in the care of patients with methicillin-resistant S. aureus, but not on a regular basis. The interviews were analysed using qualitative content analysis.

    FINDINGS: Three themes emerged from the data: feeling ignorant, afraid and insecure, feeling competent and secure and feeling stressed and overworked. The more knowledge the nurses acquired about methicillin-resistant S. aureus, the more positive was their attitude to caring for these patients.

    DISCUSSION AND CONCLUSION: Caring for patients with methicillin-resistant S. aureus without adequate knowledge of how to protect oneself and other patients against transmission may provoke anxiety among personnel. Guidelines, memos and adequate information at the right time are of central importance. Healthcare personnel must feel safe in their role as caregivers. All patients have the right to have the same quality of care regardless of the diagnosis and a lack of knowledge influences the level of care given.

    IMPLICATIONS FOR NURSING AND HEALTH POLICY: This study demonstrates the importance of education when caring for patients with infectious diseases. Hopefully, knowledge gained from our study can provide guidance for future health care when new diseases and infections occur.

  • 17.
    Andersson, Helene
    et al.
    Sophiahemmet Högskola.
    Andreassen, Sissel
    Sophiahemmet Högskola.
    Lindholm, Christina
    Sophiahemmet Högskola.
    Fossum, Bjöörn
    Sophiahemmet Högskola.
    Emotional reactions when caring for MRSA-positive patients: ignorance and fear versus knowledge and securityArtikkel i tidsskrift (Fagfellevurdert)
  • 18.
    Andersson, Helene
    et al.
    Sophiahemmet Högskola.
    Kalin, Mats
    Fossum, Bjöörn
    Sophiahemmet Högskola.
    Lindholm, Christina
    Ortqvist, Ake
    Är MRSA-patienter olika smittsamma i olika län?2009Inngår i: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 106, nr 7, 412-3 s.Artikkel i tidsskrift (Annet vitenskapelig)
  • 19.
    Andersson, Helene
    et al.
    Sophiahemmet Högskola.
    Lindholm, Christina
    Fossum, Bjöörn
    Sophiahemmet Högskola.
    MRSA - global threat and personal disaster: Patients' experiences2011Inngår i: International Nursing Review, ISSN 0020-8132, E-ISSN 1466-7657, Vol. 58, nr 1, 47-53 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    ANDERSSON H., LINDHOLM C. & FOSSUM B. (2011) MRSA - global threat and personal disaster: patients' experiences. International Nursing Review58, 47-53 Aim:  To ascertain and describe the patients' knowledge, perceptions and experiences of being methicillin-resistant Staphylococcus aureus (MRSA) positive. Background:  Antibiotic resistant bacteria are a serious global threat. MRSA can cause wound infection, pneumonia, septicaemia and mortality. This qualitative study has focused on patients' experiences of living with MRSA. Methods:  Fifteen patients with MRSA-infected wounds were interviewed. All data were transcribed verbatim and analysed according to content analysis. Findings:  Information about the MRSA diagnosis often caused a shock-like reaction. Patients' perception of being MRSA positive was stigmatizing as plague or leprosy; they felt dirty and felt that they were a severe threat to their environment. Fears of infecting someone else and being rejected were commonly expressed. The key findings emerged as a theme: Being exposed to others' shortcomings and being a threat to others' health. Three categories were identified: understanding and emotional reactions, treatment by the healthcare professionals and consequences and expectations. Gaps in both patient and staff knowledge of MRSA led to unnecessary misunderstandings, causing fear, social isolation and suffering. Conclusions:  Living with MRSA can be extremely stressful for the patients. Knowledge and empathy from staff involved in their care is crucial to optimize patients' experiences. Staff education to meet patients' demand for information and prevent contamination is essential.

  • 20.
    Andersson, Helene
    et al.
    Sophiahemmet Högskola.
    Lindholm, Christina
    Sophiahemmet Högskola.
    Iversen, Aina
    Giske, Christian G
    Örtqvist, Åke
    Kalin, Mats
    Fossum, Bjöörn
    Sophiahemmet Högskola.
    Prevalence of antibiotic-resistant bacteria in residents of nursing homes in a Swedish municipality: healthcare staff knowledge of and adherence to principles of basic infection prevention2012Inngår i: Scandinavian journal of infectious diseases, ISSN 1651-1980, Vol. 44, nr 9, 641-649 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Abstract Background: The aims of this study were to investigate the prevalence of methicillin-resistant Staphylococcus aureus (MRSA), vancomycin-resistant enterococci (VRE) and extended-spectrum β-lactamase (ESBL)-producing Enterobacteriaceae in residents living in Swedish nursing homes, and if carriage of resistant bacteria was related to antibiotic treatment, other risk factors, and/or staff's adherence to guidelines for infection control. Methods: Five hundred and sixty residents from 9 nursing homes on a total of 67 wards participated in the study and had microbiological cultures taken. Faecal samples were obtained from 495 residents (88.3%). ESBL-positive residents were followed for 2 y with repeated sampling. Two hundred and ninety-six staff members were interviewed and observed regarding familiarity with and adherence to infection control guidelines. Results: No resident was positive for MRSA or VRE. Fifteen of the residents were found to be ESBL-positive. Residents living on wards where ESBL-positive residents were identified had been treated more frequently with antibiotics (42%), compared to those on wards where no residents with ESBL were found (28%; p = 0.02). ESBL-positive Escherichia coli isolates from residents living in adjacent rooms were found to be closely genetically related when analysed by pulsed-field gel electrophoresis, indicating transmission between residents. Staff adherence to infection control guidelines sometimes revealed shortcomings, but no significant differences regarding compliance to the guidelines could be found. Conclusion: Carriage of resistant bacteria was uncommon and only ESBL-producing Enterobacteriaceae were identified in Swedish nursing homes. Usage of antibiotics was higher on wards where ESBL-positive residents were detected and there was an indication of transmission of ESBL between residents.

  • 21.
    Andreassen, Sissel
    et al.
    Sophiahemmet Högskola.
    Randers, Ingrid
    Sophiahemmet Högskola.
    Näslund, Erik
    Stockeld, Dag
    Mattiasson, Anne-Cathrine
    Sophiahemmet Högskola.
    Family members' experiences, information needs and information seeking in relation to living with a patient with oesophageal cancer2005Inngår i: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 14, nr 5, 426-34 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    A qualitative study was conducted with the aim to describe family members' experiences, information needs and information seeking in relation to living with a patient suffering from oesophageal cancer. Data were collected by means of semi-structured interviews with nine family members. A content analysis was used in order to organize data. It was found that family members were not aware of the severe diagnosis and the illness caused intrusions on the family. The time following diagnosis family members' information seeking was low. They used interpersonal as well as mass media sources to obtain knowledge about and handle the uncertainty related to the illness. Some family members did not actively seek information. In conclusion, healthcare professionals are expected to improve quality of cancer care. These improvements are unlikely to occur without an understanding of family members' needs. This study shows that the family members were unprepared of receiving a diagnosis of oesophageal cancer. They emphasized the importance of including the children in the care given. Moreover, the whole family was faced with uncertainty, which led to intrusion on everyday life. Therefore, family members used different strategies for managing the uncertainty, whereof one was searching for information. The primary source of information was the physician.

  • 22.
    Andreassen, Sissel
    et al.
    Sophiahemmet Högskola.
    Randers, Ingrid
    Sophiahemmet Högskola.
    Näslund, Erik
    Stockeld, Dag
    Mattiasson, Anne-Cathrine
    Sophiahemmet Högskola.
    Information needs following a diagnosis of oesophageal cancer; self-perceived information needs of patients and family members compared with the perceptions of healthcare professionals: a pilot study2007Inngår i: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 16, nr 3, 277-85 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    This pilot study was undertaken to describe patients' and family members' information needs following a diagnosis of oesophageal cancer and healthcare professionals' (HCP) perceptions concerning patients' and family members' information needs. Another aim was to describe patients' and family members' satisfaction with information provided. Data were collected by means of a self-report questionnaire. A total of 15 patients, 16 family members and 34 HCP participated. Patients and family members consider most information to be important. The high rating for information about tests/treatment and self-care means that both patients and family members consider this to be the most important areas of information. Healthcare professionals tend to underestimate both patients' and family members' needs for information. Patients and family members were only partly satisfied with the information received, with patients in general more satisfied with information given compared with family members. Patients' and family members' needs for information following a diagnosis of oesophageal cancer are substantial and have not been adequately met by HCP. A qualitative study might be helpful to complete the description of patients' and family members' needs. If a questionnaire is employed, it ought to be less extensive.

  • 23.
    Andreassen, Sissel
    et al.
    Sophiahemmet Högskola.
    Randers, Ingrid
    Sophiahemmet Högskola.
    Näslund, Erik
    Stockeld, Dag
    Mattiasson, Anne-Cathrine
    Sophiahemmet Högskola.
    Patients' experiences of living with oesophageal cancer2006Inngår i: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 15, nr 6, 685-95 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    AIMS: The aim of this study is to describe patients' experiences of living with oesophageal cancer and how they seek information. BACKGROUND: Oesophageal cancer is a devastating disease with poor prognosis. Nursing care for individuals with oesophageal cancer requires increased knowledge of how they experience illness and how it affects them. METHOD: Data were collected by semi-structured, qualitative interviews with 13 participants. Content analysis was used to analyse data. RESULTS: Four themes were identified: (i) Experiences of becoming a patient diagnosed with oesophageal cancer is distinguished by the participants' experiences of vague symptoms, of receiving the diagnosis and of existential concerns evoked by the illness. (ii) Experiences of undergoing investigations and treatment consist of the participants' experiences of extreme tiredness in relation to investigations and treatment. (iii) Experiences of intrusions in daily life is conceptualized by the participants' experiences of how the illness influenced their daily life. (iv) Managing a life-threatening illness consists of a variety of strategies, which the participants employed to manage their life-threatening illness. CONCLUSIONS: The participants were unprepared of receiving a diagnosis of oesophageal cancer. Dysphagia, fatigue and uncertainty influenced the participants' everyday life. To manage the illness one of their strategies was seeking for information. The physicians were considered the main source of information, but family as well as friends with medical knowledge were also acknowledged as valuable sources. RELEVANCE TO CLINICAL PRACTICE: Understanding patients' experiences of living with oesophageal cancer is important to improve nursing care. When caring for these patients, focus ought to be on the whole family. In nursing care, it is important to be aware of the effects of dysphagia and fatigue. Health-care professionals ought to organize meetings with fellow patients and recommend literature and websites that provide patients with high quality information.

  • 24.
    Andreassen, Sissel
    et al.
    Sophiahemmet Högskola.
    Randers, Ingrid
    Sophiahemmet Högskola.
    Ternulf Nyhlin, Kerstin
    Sophiahemmet Högskola.
    Mattiasson, Anne-Cathrine
    Sophiahemmet Högskola.
    A meta-analysis of qualitative studies on living with oesophageal and clinically similar forms of cancer, seen from the perspective of patients and family members2007Inngår i: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, Vol. 2, nr 2, 114-27 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    This study is part of a research programme of which the aim is to generate knowledge about patients' and family members' experiences of living with oesophageal cancer from their perspective. The aim of the present study was to extend this knowledge by adding other forms of cancer: other upper gastrointestinal cancer, and head and neck cancer. These cancer forms have clinical similarities with oesophageal cancer and the survival rates are similar. This study is a qualitative meta-analysis that examines the results reported in 13 qualitative original research reports, published in peer-reviewed nursing journals between April 1998 and June 2006. We used thematic analysis. Three themes were formulated: “running into an unpredictable enemy”, “enduring a fading body” and “entering social silence”. Patients and family members gave voice to a suffering that involved the whole person. Our findings show that the whole person must be given care, and this care must include the whole family

  • 25.
    Asplin, Nina
    et al.
    Sophiahemmet Högskola.
    Dellgren, Annika
    Conner, Peter
    Education in obstetrical ultrasound - an important factor for increasing the prenatal detection of congenital heart disease2013Inngår i: Acta Obstetricia et Gynecologica Scandinavica, ISSN 0001-6349, E-ISSN 1600-0412, Vol. 92, nr 7, 804-808 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    OBJECTIVE: To evaluate the effects of postgraduate education in obstetrical ultrasound on the prenatal detection rate of congenital heart disease. SETTING: Tertiary care center. POPULATION: Experienced and less experienced midwives performing ultrasound scans. METHODS: Number of fetuses and live born children with severe congenital heart malformations were extracted from patient records. The detection rates of experienced and less experienced midwives were compared following a postgraduate training program in obstetrical ultrasound. MAIN OUTCOME MEASURES: The prenatal detection rate of complex congenital heart malformations. RESULTS: The prenatal detection rate for the entire unit increased significantly during the study period (32 vs. 69%, p<0.05). Following education, we observed a significant increase in detection rates (21 vs. 67%, p<0.01) among experienced midwives. In the group of less experienced midwives, we found a positive effect of training with considerably higher detection rates compared to results achieved by their more experienced colleagues prior to the program (40 vs. 21%). CONCLUSION: There is a clear improvement in the prenatal detection rates of complex heart malformations following a postgraduate education in obstetrical ultrasound. Similar training should be offered to both midwives and doctors performing routine scans to increase the standards of antenatal screening for congenital heart disease. © 2013 The Authors Acta Obstetricia et Gynecologica Scandinavica © 2013 Nordic Federation of Societies of Obstetrics and Gynecology.

  • 26. Asplin, Nina
    et al.
    Wessel, Hans
    Marions, Lena
    Georgsson Öhman, Susanne
    Sophiahemmet Högskola.
    Maternal emotional wellbeing over time and attachment to the fetus when a malformation is detected2015Inngår i: Sexual & Reproductive Healthcare, ISSN 1877-5756, Vol. 6, nr 3, 191-195 s.Artikkel i tidsskrift (Fagfellevurdert)
  • 27.
    Asplin, Nina
    et al.
    Sophiahemmet Högskola.
    Wessel, Hans
    Marions, Lena
    Georgsson Öhman, Susanne
    Sophiahemmet Högskola.
    Pregnancy termination due to fetal anomaly: women's reactions, satisfaction and experiences of care2014Inngår i: Midwifery, ISSN 0266-6138, E-ISSN 1532-3099, Vol. 30, nr 6, 620-627 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    OBJECTIVE:

    to explore what women who have had a pregnancy terminated due to a detected fetal malformation perceived as having been important in their encounters with caregivers for promoting their healthy adjustment and well-being.

    METHOD:

    an exploratory descriptive design was used. Semi-structured interviews were audiotaped, and the information pathway described. The text was processed through qualitative content analysis in six steps.

    SETTING:

    four fetal care referral centres in Stockholm, Sweden.

    PARTICIPANTS:

    11 women opting for pregnancy termination due to fetal malformation.

    FINDINGS:

    in-depth understanding and compassion are important factors in providing the feeling of support people need so they are able to adapt to crisis. The women emphasised that the caregivers have to communicate a sense of responsibility, hope and respect and provide on-going care for them to feel assured of receiving good medical care and treatment. Aside from existing psychological conditions, the women identified as having emotional distress directly after termination and for at least the following three months. Most women experienced a range of negative emotions after pregnancy termination, including sadness, meaninglessness, loneliness, tiredness, grief, anger and frustration. Still some of this group had positive reactions because they experienced empathy and well-organised care.

    CONCLUSION AND IMPLICATIONS FOR PRACTICE:

    The most important factors associated with satisfaction regarding pregnancy termination due to a fetal malformation are the human aspects of care, namely state-dependent communication and in-depth understanding and compassion. The changes in care most often asked for were improvements in the level of standards and provision of adequate support through state-dependent communication, in-depth understanding and compassion, and complete follow-up routines and increased resources. Targeted education for the caregivers may be suited to ensuring that they properly meet needs of their patients.

  • 28.
    Asplin, Nina
    et al.
    Sophiahemmet Högskola.
    Wessel, Hans
    Marions, Lena
    Georgsson Öhman, Susanne
    Sophiahemmet Högskola.
    Pregnant women's experiences, needs, and preferences regarding information about malformations detected by ultrasound scan2012Inngår i: Sexual & reproductive healthcare : official journal of the Swedish Association of Midwives, ISSN 1877-5764, Vol. 3, nr 2, 73-8 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    OBJECTIVES: The aim of the study was to explore pregnant women's experiences of received information in relation to fetal malformation detected on ultrasound.

    METHOD: An exploratory descriptive design was used. Semi-structured interviews with women who continued their pregnancy and women who chose to terminate were audiotaped, the information pathway described, and the text subjected to qualitative content analysis.

    RESULTS: Most of the women who expected a baby with an abnormality experienced the information given as insufficient, often misleading, conflicting, or incoherent, and sometimes negative. Important factors for interaction between women and caregivers were timing, duration, and manner of the initial dialog and ongoing support. Positive interactions improved the women's ability to understand the information, fostered feelings of trust and safety which reduced their anxiety.

    CONCLUSION: Women expressed dissatisfaction both regarding the care-givers' methods of giving information and apply for information from different specialists and continuity. The study highlights important factors which may be helpful to the professionals for improving the information to this vulnerable group of women.

  • 29.
    Asplin, Nina
    et al.
    Sophiahemmet Högskola.
    Wessel, Hans
    Marions, Lena
    Georgsson Öhman, Susanne
    Sophiahemmet Högskola.
    Pregnant women's perspectives on decision-making when a fetal malformation is detected by ultrasound examination2013Inngår i: Sexual & Reproductive HealthCare, ISSN 1877-5756, E-ISSN 1877-5764, Vol. 4, nr 2, 79-84 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Objectives

    The aims of the study were to explore factors influencing the decision to continue or terminate pregnancy due to detection of fetal malformation following ultrasound examination, to elucidate the need for more information or other routines to facilitate the decision-making process and to assess satisfaction with the decision made.

    Design

    Descriptive study.

    Setting

    Four fetal care referral centres in Stockholm, Sweden.

    Population

    Pregnant women with a detected fetal malformation.

    Methods

    Data was collected by questionnaires. 134 women participated, 99 completing the questionnaire. Descriptive statistical analysis was performed.

    Results

    Both women who continued and those who terminated pregnancy based their decision on the severity of the malformation. Other reasons for terminating the pregnancy were aspects including socioeconomic considerations. None stated religious factors. The doctor at the fetal care unit also had an influence on the decision-making. The timeframe receiving information was regarded as long enough in duration but not the number of occasions. In both groups the women made the decision by themselves or together with their partners. The majority experienced that they had made the right decision. Women who terminated their pregnancy had a significant higher rate (51.2%) (p⩽ 0.004) of previous abortions than those in the continuing group (23.2%).

    Conclusion

    The decision to continue or terminate the pregnancy was to a great extent based on the severity of the malformation. Religious aspects did not seem to influence the decision. Many women expressed a need for additional occasion of information. The vast majority of women were satisfied with their decision.

  • 30. Avelin, Pernilla
    et al.
    Erlandsson, Kerstin
    Hildingsson, Ingegerd
    Rådestad, Ingela
    Sophiahemmet Högskola.
    Swedish parents' experiences of parenthood and the need for support to siblings when a baby is stillborn2011Inngår i: Birth, ISSN 0730-7659, E-ISSN 1523-536X, Vol. 38, nr 2, 150-8 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: It has been argued that having a stillborn baby in the family affects older siblings more than parents realize. The aim of this study was to describe parenthood and the needs of siblings after stillbirth from the parents' perspective.

    METHODS: Six focus groups were held with 27 parents who had experienced a stillbirth and who had had children before the loss. The discussion concerned parents' support to the siblings, and the sibling's meeting, farewell, and memories of their little sister or brother. Data were analyzed using qualitative content analysis.

    RESULTS: The overall theme of the findings was parenthood in a balance between grief and everyday life. In the analysis, three categories emerged that described the construction of the theme: support in an acute situation, sharing the experiences within the family, and adjusting to the situation.

    CONCLUSIONS: The siblings' situation is characterized by having a parent who tries to maintain a balance between grief and everyday life. Parents are present and engaged in joint activities around the stillbirth together with the siblings of the stillborn baby. Although parents are aware of the sibling's situation, they feel that they are left somewhat alone in their parenthood after stillbirth and therefore need support and guidance from others.

  • 31. Avelin, Pernilla
    et al.
    Gyllenswärd, Göran
    Erlandsson, Kerstin
    Rådestad, Ingela
    Sophiahemmet Högskola.
    Adolescents' experiences of having a stillborn half-sibling2014Inngår i: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 38, nr 9, 557-562 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Although there is an increasing interest in siblings' experiences of loss and grief there is limited knowledge of adolescent's own perspectives, especially in a unique situation as after stillbirth in a reconstituted family. The authors interviewed 13 bereaved adolescents. They were sad that their family was not the same and expressed feelings of being inside family grief, yet outside, because they did not have full access in their reconstituted family. An implication of present findings is that it is important to include all the members of the family in the grieving process, even half-siblings of the deceased child.

  • 32. Avelin, Pernilla
    et al.
    Hildingsson, Ingegerd
    Davidsson-Bremborg, Anna
    Rådestad, Ingela
    Sophiahemmet Högskola.
    Make the stillborn baby and the loss real for the siblings: parents' advice on how the siblings of a stillborn baby can be supported2012Inngår i: Journal of Perinatal Education, ISSN 1058-1243, EISSN 1548-8519, Vol. 21, nr 2, 90-98 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    This study aimed to investigate parents' advice to other parents on the basis of their own experiences of siblings' taking leave of a stillborn sister or brother. The study was a Web questionnaire study of 411 parents. The thematic content analysis resulted in two categories: "Make the stillborn baby and the loss real for the siblings" and "Take the siblings' resources and prerequisites into account." Parents' advised that siblings should see and hold the stillborn baby and, thus, be invited and included into the leave-taking process with respect to the siblings' feelings, resources, and prerequisites. Based on these findings, professional caregivers can usefully be proactive in their approach to facilitate and encourage the involvement of siblings.

  • 33. Avelin, Pernilla
    et al.
    Rådestad, Ingela
    Sophiahemmet Högskola.
    Säflund, Karin
    Wredling, Regina
    Erlandsson, Kerstin
    Parental grief and relationships after the loss of a stillborn baby2013Inngår i: Midwifery, ISSN 0266-6138, E-ISSN 1532-3099, Vol. 29, nr 6, 668-673 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    OBJECTIVES: to describe the grief of mothers and fathers and its influence on their relationships after the loss of a stillborn baby. DESIGN: a postal questionnaire at three months, one year and two years after stillbirth. SETTING: a study of mothers and fathers of babies stillborn during a one-year period in the Stockholm region of Sweden. PARTICIPANTS: 55 parents, 33 mothers and 22 fathers. FINDINGS: mothers and fathers stated that they became closer after the loss, and that the feeling deepened over the course of the following year. The parents said that they began grieving immediately as a gradual process, both as individuals, and together as a couple. During this grieving process their expectations, expressions and personal and joint needs might have threatened their relationship as a couple, in that they individually felt alone at this time of withdrawal. While some mothers and fathers had similar grieving styles, the intensity and expression of grief varied, and the effects were profound and unique for each individual. KEY CONCLUSIONS: experiences following a loss are complex, with each partner attempting to come to terms with the loss and the resultant effect on the relationship with their partner. IMPLICATIONS FOR PRACTICE: anticipating and being able to acknowledge the different aspects of grief will enable professionals to implement more effective intervention in helping couples grieve both individually and together.

  • 34.
    Axelsson, Lena
    et al.
    Sophiahemmet Högskola.
    Alvariza, Anette
    Lindberg, Jenny
    Öhlén, Joakim
    Håkanson, Cecilia
    Sophiahemmet Högskola.
    Reimertz, Helene
    Fürst, Carl-Johan
    Årestedt, Kristofer
    Unmet palliative care needs among patients with end-stage kidney disease: a national registry study about the last week of life2017Inngår i: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, S0885-3924(17)30494-3Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    CONTEXT: End-stage kidney disease (ESKD) is characterized by high physical and psychological burden and therefore, more knowledge about the palliative care provided close to death is needed.

    OBJECTIVES: To describe symptom prevalence, relief and management during the last week of life, as well as end-of-life communication, in patients with ESKD.

    METHODS: This study was based on data from the Swedish Register of Palliative Care. Patients aged 18 or older who died from a chronic kidney disease, with or without dialysis treatment (ICD-10-SE; N18.5 or N18.9), during 2011 and 2012 were selected.

    RESULTS: 472 patients were included. Of six predefined symptoms, pain was the most prevalent (69%), followed by respiratory secretion (46%), anxiety (41%), confusion (30%), shortness of breath (22%), and nausea (17%). Of patients with pain and/or anxiety, 32% and 44% respectively were only partly relieved or not relieved at all. Of patients with the other symptoms, a majority (55%-84%) were partly relieved or not relieved at all. End-of-life discussions were reported in 41% of patients and 71% of families. A minority died in specialized palliative care: 8% in hospice/in-patient palliative care and 5% in palliative home care. Of all patients, 19% died alone. Bereavement support was offered to 38% of families.

    CONCLUSION: Even if death is expected, the majority of patients dying with ESKD had unmet palliative care needs regarding symptom management, advance care planning, and bereavement support.

  • 35.
    Axelsson, Lena
    et al.
    Sophiahemmet Högskola.
    Björvell, Catrin
    Mattiasson, Anne-Cathrine
    Sophiahemmet Högskola.
    Randers, Ingrid
    Sophiahemmet Högskola.
    Swedish Registered Nurses' incentives to use nursing diagnoses in clinical practice2006Inngår i: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 15, nr 8, 936-45 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    AIMS AND OBJECTIVES: The purpose of this study was to describe Registered Nurses' incentives to use nursing diagnoses in clinical practice. BACKGROUND: The use of nursing diagnoses is scarce in Swedish patient records. However, there are hospital wards were all nurses formulate and use nursing diagnoses in their daily work. This leads to the question of what motivates these nurses who do use nursing diagnoses in clinical practice. DESIGN: A qualitative descriptive design. METHODS: A purposeful sampling of 12 Registered Nurses was used. Qualitative interviews to collect data and a content analysis were performed. RESULTS: Five categories were identified: identification of the patient as an individual and as a whole, a working tool for facilitating nursing care, increasing awareness within nursing, support from the management and influence on the professional role. The principle findings of this study were: (i) that the Registered Nurses perceived that nursing diagnoses clarified the patient's individual needs and thereby enabled them to decide on more specific nursing interventions, (ii) that nursing diagnoses were found to facilitate communication between colleagues concerning patient care and thus promoted continuity of care and saved time and (iii) that nursing diagnoses were perceived to increase the Registered Nurses' reflective thinking leading to a continuous development of professional knowledge. CONCLUSIONS: The present findings suggest that the incentives to use nursing diagnoses originate from effects generated from performing a deeper analysis of the patient's nursing needs. Further research is needed to test and validate the usability and consequences of using nursing diagnoses in clinical practice. Motivating factors found in this study may be valuable to Registered Nurses for the use and development of nursing diagnoses in clinical care. Moreover, these factors may be of relevance in other countries that are in a similar situation as Sweden concerning application of nursing diagnoses.

  • 36.
    Axelsson, Lena
    et al.
    Sophiahemmet Högskola.
    Klang, Birgitta
    Lundh Hagelin, Carina
    Sophiahemmet Högskola.
    Jacobson, Stefan H
    Andreassen Gleissman, Sissel
    Sophiahemmet Högskola.
    End of life of patients treated with haemodialysis as narrated by their close relatives2015Inngår i: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 29, nr 4, 776-784 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    AIM: The study aimed to describe end of life for patients treated with maintenance haemodialysis as narrated by their close relatives.

    INTRODUCTION: Many patients undergoing haemodialysis are older, have several comorbidities and underestimated symptoms and are in their last year of life. To improve care, we need to know more about their end-of-life situation.

    DESIGN: Qualitative and descriptive.

    METHODS: Qualitative retrospective interviews were conducted with 14 close relatives of deceased haemodialysis patients (3-13 months after death). Data were analysed using qualitative content analysis. The study is ethically approved.

    FINDINGS: In the last months, a gradual deterioration in health with acute episodes necessitating hospital admissions was described. This involved diminishing living space and expressions of dejection, but also of joy. Three patterns emerged in the last weeks: uncertain anticipation of death as life fades away; awaiting death after haemodialysis withdrawal; and sudden but not unexpected death following intensive care. Findings show complexities of decisions on haemodialysis withdrawal.

    CONCLUSIONS: Different end-of-life patterns all involved increasingly complex care needs and existential issues. Findings show a need for earlier care planning. The identification of organisational factors to facilitate continuity and whole person care to meet these patients' specific care needs with their complex symptom burdens and comorbidities is needed. Findings indicate the need for integration of a palliative care approach in the treatment of patients in haemodialysis care.

  • 37.
    Axelsson, Lena
    et al.
    Sophiahemmet Högskola.
    Klang, Birgitta
    Lundh Hagelin, Carina
    Sophiahemmet Högskola.
    Jacobson, Stefan H
    Andreassen Gleissman, Sissel
    Sophiahemmet Högskola.
    Meanings of being a close relative of a family member treated with haemodialysis2015Inngår i: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 24, nr 3/4, 447-456 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    AIMS AND OBJECTIVES:

    To describe and elucidate the meanings of being a close relative of a severely ill family member treated with maintenance haemodialysis approaching the end of life.

    BACKGROUND:

    End-stage renal disease together with comorbidities, haemodialysis treatment and high mortality rates also affects the lives of close relatives, who report burdens and impaired quality of life. To improve care, more understanding is needed of close relatives' experiences during these patients' end of life.

    DESIGN:

    This study has a qualitative interpretative design.

    METHODS:

    Fourteen retrospective qualitative interviews were conducted with close relatives (aged 48-93 years) of deceased patients who had been treated with haemodialysis. The interview text was interpreted using a phenomenological hermeneutical method in three phases.

    RESULTS:

    The findings of the structural analysis were formulated as six themes: Striving to be supportive and helpful without doing harm to the ill person's self; Needing increasing strength and support; Balancing the will to help with one's own ongoing life; Increasing responsibility involving dilemmas; Striving for a good life together in the present and Living with awareness of death.

    CONCLUSIONS:

    Close relatives strive for balance and well-being accompanying their ill family member through the end of life. They are facing moral dilemmas and growing demands as their responsibility increases with the deterioration of their family member. Support from and interaction with the healthcare professionals is then of significance.

    RELEVANCE TO CLINICAL PRACTICE:

    Findings challenge healthcare professionals in haemodialysis settings to identify close relatives' individual resources and needs towards the patients' end of life. Healthcare professionals in haemodialysis settings need to offer close relatives opportunities to talk about the future and what may be expected at end of life, with or without haemodialysis. They should also contact the closest relative after the death as they may need confirmation and closure.

  • 38.
    Axelsson, Lena
    et al.
    Sophiahemmet Högskola.
    Randers, Ingrid
    Sophiahemmet Högskola.
    Jacobson, Stefan H
    Klang, Birgitta
    Living with haemodialysis when nearing end of life2012Inngår i: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 26, nr 1, 45-52 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    AIMS AND OBJECTIVES: The aim of this study was to describe and to elucidate the meanings of being severely ill living with haemodialysis when nearing end of life.

    INTRODUCTION: To have end stage renal disease and to be treated with maintenance haemodialysis implies being dependent on lifelong treatment. Several studies have reported that these patients suffer a high symptom burden and an impaired quality of life due to both disease and treatment. In the dialysis unit, where the focus is on handling technology and maintaining life, end of life care may be neglected or overlooked. Nevertheless, mortality rates show that about one-fourth of patients in haemodialysis care are in their last year of life.

    DESIGN: A qualitative interpretative design was used.

    METHODS: Serial qualitative interviews over a period of 12 months were conducted with eight patients (aged 66-87). Altogether text of 31 interviews was interpreted using a phenomenological hermeneutical method in three phases. The study is ethically approved.

    FINDINGS: The structural analysis resulted in 11 subthemes and thereafter the following three themes were formulated; being subordinate to the deteriorating body, changing outlook on life and striving for upheld dignity. The comprehensive interpretation revealed that being severely ill living with haemodialysis near the end of life means living with suffering simultaneously with reconciliation and well-being. Further, the meanings are understood as intertwined with being old.

    CONCLUSIONS: Findings contribute to an increased awareness of the complexities of these patients' life worlds and their meanings, and thus of the importance to listen to their experiences and their understandings. Findings suggest that to integrate the philosophy of palliative care in haemodialysis units may improve care for patients who are living with haemodialysis and approaching the end of their lives.

  • 39.
    Axelsson, Lena
    et al.
    Sophiahemmet Högskola.
    Randers, Ingrid
    Sophiahemmet Högskola.
    Lundh Hagelin, Carina
    Sophiahemmet Högskola.
    Jacobson, Stefan H
    Klang, Birgitta
    Thoughts on death and dying when living with haemodialysis approaching end of life2012Inngår i: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 21, nr 15-16, 2149-59 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    AIMS AND OBJECTIVES: To describe inner thoughts and feelings relating to death and dying when living with haemodialysis approaching end of life.

    BACKGROUND: Patients who undergo maintenance haemodialysis suffer a significant symptom burden and an impaired quality of life. The high mortality rate in these patients indicates that about one-fourth of them are in their last year of life, suggesting the presence of death and dying in the haemodialysis unit.

    DESIGN: A qualitative descriptive design was used. Methods.  A total of 31 qualitative interviews were conducted with eight patients (aged 66-87) over a period of 12 months. Qualitative content analysis was used to analyse data.

    RESULTS: The analysis revealed 10 subthemes that were sorted into three main themes. Being aware that death may be near comprises being reminded of death and dying by the deteriorating body, by the worsening conditions and deaths of fellow patients, and by knowing haemodialysis treatment as a border to death. Adapting to approaching death comprises looking upon death as natural, preparing to face death, hoping for a quick death and repressing thoughts of death and dying. Being alone with existential thoughts comprises a wish to avoid burdening family, lack of communication with healthcare professionals and reflections on haemodialysis withdrawal as an hypothetic option.

    CONCLUSIONS: Living with haemodialysis approaching, the end of life involves significant and complex existential issues and suffering, and patients are often alone with their existential thoughts.

    RELEVANCE TO CLINICAL PRACTICE: Nurses and other healthcare professionals in haemodialysis settings need to combine technical and medical abilities with committed listening and communication skills and be open to talking about death and dying, with sensitivity to individual and changeable needs.

  • 40. Backman, Sara
    et al.
    Björling, Gunilla
    Sophiahemmet Högskola.
    Johansson, Unn-Britt
    Sophiahemmet Högskola.
    Lysdahl, Michael
    Markström, Agneta
    Schedin, Ulla
    Aune, Ragnhild E
    Frostell, Claes
    Karlsson, Sigbritt
    Material wear of polymeric tracheostomy tubes: a six-month study2009Inngår i: The Laryngoscope, ISSN 1531-4995, Vol. 119, nr 4, 657-64 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    OBJECTIVES: The objectives were to study long-term material wear of tracheostomy tubes made of silicone (Si), polyvinyl chloride (PVC), and polyurethane (PU) after 3 and 6 months of clinical use. STUDY DESIGN: The study has a prospective and comparative design. METHODS: Nineteen patients with long-term tracheostomy, attending the National Respiratory Center in Sweden, were included, n = 6 with Si tubes, n = 8 with PVC tubes, and n = 5 with PU tubes. The tubes were exposed to the local environment in the trachea for 3 and 6 months and analyzed by scanning electron microscopy, attenuated total reflectance Fourier transform infrared spectroscopy, and differential scanning calorimetry. RESULTS: All tubes revealed severe surface changes. No significant differences were established after 3 or 6 months of exposure between the various materials. The changes had progressed significantly after this period, compared to previously reported changes after 30 days of exposure. The results from all analyzing techniques correlated well. CONCLUSIONS: All tubes, exposed in the trachea for 3-6 months, revealed major degradation and changes in the surface of the material. Polymeric tracheostomy tubes should be changed before the end of 3 months of clinical use.

  • 41. Beck, Ingela
    et al.
    Olsson Möller, Ulrika
    Malmström, Marlene
    Klarare, Anna
    Samuelsson, Henrik
    Lundh Hagelin, Carina
    Sophiahemmet Högskola.
    Rasmussen, Birgit
    Fürst, Carl Johan
    Translation and cultural adaptation of the Integrated Palliative care Outcome Scale including cognitive interviewing with patients and staff2017Inngår i: BMC Palliative Care, ISSN 1472-684X, E-ISSN 1472-684X, Vol. 16, nr 1, 49Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: To expand our clinical and scientific knowledge about holistic outcomes within palliative care, there is a need for agreed-upon patient-reported outcome measures. These patient-reported outcome measures then require translation and cultural adaptation, either from country-specific languages to English, or the other way around. The aim of this study was to translate and cross-culturally adapt the Integrated Palliative care Outcome Scale (IPOS) to the Swedish care context.

    METHODS: Swedish versions of IPOS Patient and IPOS Staff were developed and culturally adapted using recommended guidelines including cognitive interviews with patients (n = 13) and staff (n = 15) from different care contexts including general and specialised palliative care.

    RESULTS: The comprehension and judgement difficulties identified in the pre-final patient and staff versions were successfully solved during the cognitive interviewing process. IPOS was well accepted by both patients and staff, none of the questions were experienced as inappropriate, and all questions were judged important.

    CONCLUSIONS: In this study, we translated and culturally adapted the patient and staff versions of IPOS, and demonstrated face and content validity and acceptability of the scale through cognitive interviewing with patients and staff within residential care facility, surgical and specialised palliative home care units. Cognitive interviewing in parallel with patients and staff in rounds, with tentative analysis in between, was a suitable method for identifying and solving challenges with comprehension and evaluation in the pre-final version of IPOS. The Swedish IPOS is now available for use in a variety of clinical care settings.

  • 42.
    Bergkvist, Karin
    et al.
    Sophiahemmet Högskola.
    Fossum, Bjöörn
    Sophiahemmet Högskola.
    Johansson, Unn-Britt
    Sophiahemmet Högskola.
    Mattsson, J
    Larsen, J
    Patients' experiences of different care settings and a new life situation after allogeneic haematopoietic stem cell transplantation2017Inngår i: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Over the past 20 years, considerable healthcare resources have shifted from an inpatient to an outpatient setting. To be in an outpatient setting or at home after allogeneic haematopoietic stem cell transplantation (allo-HSCT) has been shown to be medically safe and beneficial to the patient. In this study we describe patients' experiences of different care settings (hospital or home) and a new life situation during the acute post-transplant phase after HSCT. Semi-structured interviews were conducted with 15 patients (six women and nine men) 29-120 days after HSCT. An inductive qualitative content analysis was performed to analyse the data. The analysis resulted in four categories: To be in a safe place, To have a supportive network, My way of taking control, and My uncertain return to normality. The findings showed that patients undergoing HSCT felt medically safe regardless of the care setting. The importance of a supportive network (i.e. the healthcare team, family and friends) was evident for all patients. Both emotional and problem-focused strategies were used to cope with an uncertain future. Being at home had some positive advantages, including freedom, having the potential for more physical activity, and being with family members. The study highlights some key areas thought to provide more personalised care after HSCT.

    Fulltekst tilgjengelig fra 2018-03-02 15:58
  • 43.
    Bergkvist, Karin
    et al.
    Sophiahemmet Högskola.
    Larsen, J
    Johansson, Unn-Britt
    Sophiahemmet Högskola.
    Mattsson, J
    Fossum, Bjöörn
    Sophiahemmet Högskola.
    Family members' life situation and experiences of different caring organisations during allogeneic haematopoietic stem cells transplantation-A qualitative study.2016Inngår i: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    The aim of this study was to describe family members' life situation and experiences of care in two different care settings, the patient's home or in hospital during the acute post-transplantation phase after allogeneic haematopoietic stem cell transplantation (HSCT). Data were collected through semi-structured interviews with 14 family members (seven women and seven men). An inductive qualitative content analysis was used to analyse the data. The majority of the family members' (n = 10) had experiences from home care. The findings show the family members' voice of the uncertainty in different ways, related with the unknown prognosis of the HSCT, presented as Being me being us in an uncertain time. The data are classified into; To meet a caring organisation, To be in different care settings, To be a family member and To have a caring relationship. Positive experiences such as freedom and security from home care were identified. The competence and support from the healthcare professionals was profound. Different strategies such as adjusting, having hope and live in the present used to balance to live in an uncertain time. The healthcare professionals need to identify psychosocial problems, and integrate the psychosocial support for the family to alleviate or decrease anxiety during HSCT, regardless of the care setting.

  • 44.
    Bergkvist, Karin
    et al.
    Sophiahemmet Högskola.
    Larsen, Joacim
    Johansson, Unn-Britt
    Sophiahemmet Högskola.
    Mattsson, Jonas
    Svahn, Britt-Marie
    Hospital care or home care after allogeneic hematopoietic stem cell transplantation: patients' experiences of care and support2013Inngår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 17, nr 4, 389-395 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    PURPOSE:

    Treatment at home during the pancytopenic phase after allogeneic hematopoietic stem cell transplantation (HSCT) has been an option for patients at our center since 1998. Earlier studies have shown that home care is safe and has medical advantages. In this study, we present patients' experiences of care and support while being treated in hospital or at home during the acute post-transplantation phase.

    METHOD:

    Patients (n = 41, 22 in hospital care and 19 in home care) answered the SAUC questionnaire at discharge (when home, or from hospital). Both statistical analysis and deductive content analysis were used.

    RESULTS:

    The patients were highly satisfied with the care and support during the acute post-transplantation phase. Patients in home care were found to be more satisfied with care in general than patients in hospital care. The importance of safety, empathy, and encouragement from healthcare staff were expressed regardless of where care was given. Patients also felt that receipt of continuous, updated information during treatment was important and they had a strong belief in HSCT but were uncertain of the future regarding recovery.

    CONCLUSIONS:

    The main findings of this study were that in comparison to hospital care, home care does not appear to have a significant negative effect on patients' experiences of care and support during the acute post-transplantation phase. In addition patients in home care felt safe, seen as a person and encouragement seem to empower the patients at home. Thus, this study may encourage other transplantation centers to provide home care if the patients want it.

  • 45.
    Bergkvist, Karin
    et al.
    Sophiahemmet Högskola.
    Winterling, Jeanette
    Johansson, Eva
    Johansson, Unn-Britt
    Sophiahemmet Högskola.
    Svahn, Britt-Marie
    Remberger, Mats
    Mattsson, Jonas
    Larsen, Joacim
    General health, symptom occurrence, and self-efficacy in adult survivors after allogeneic hematopoietic stem cell transplantation: a cross-sectional comparison between hospital care and home care2015Inngår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 23, nr 5, 1273-83 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    PURPOSE: Earlier studies have shown that home care during the neutropenic phase after allogeneic hematopoietic stem cell transplantation (allo-HSCT) is medically safe, with positive outcomes. However, there have been few results on long-term outcomes after home care. The aims of this study were to compare general health, symptom occurrence, and self-efficacy in adult survivors who received either home care or hospital care during the early neutropenic phase after allo-HSCT and to investigate whether demographic or medical variables were associated with general health or symptom occurrence in this patient population.

    METHODS: In a cross-sectional survey, 117 patients (hospital care: n = 78; home care: n = 39) rated their general health (SF-36), symptom occurrence (SFID-SCT, HADS), and self-efficacy (GSE) at a median of 5 (1-11) years post-HSCT.

    RESULTS: No differences were found regarding general health, symptom occurrence, or self-efficacy between groups. The majority of patients in both hospital care (77 %) and home care (78 %) rated their general health as "good" with a median of 14 (0-36) current symptoms. Symptoms of fatigue and sexual problems were among the most common. Poor general health was associated with acute graft-versus-host disease (GVHD), low self-efficacy, and cord blood stem cells. A high symptom occurrence was associated with female gender, acute GVHD, and low self-efficacy.

    CONCLUSIONS: No long-term differences in general health and symptom occurrence were observed between home care and hospital care. Thus, home care is an alternative treatment method for patients who for various reasons prefer this treatment option. We therefore encourage other centers to offer home care to patients.

  • 46. Berglund, Britta
    et al.
    Mattiasson, Anne-Cathrine
    Sophiahemmet Högskola.
    Ehlers-Danlos syndrom: vad är det?2003Inngår i: Svensk Rehabilitering, ISSN 1403-4468, nr 3, 44-7 s.Artikkel i tidsskrift (Annet (populærvitenskap, debatt, mm))
  • 47. Berglund, Britta
    et al.
    Mattiasson, Anne-Cathrine
    Sophiahemmet Högskola.
    Nordström, Gun
    Acceptance of disability and sense of coherence in individuals with Ehlers-Danlos syndrome2003Inngår i: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 12, nr 5, 770-7 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Ehlers-Danlos syndrome (EDS) is a relatively rare, inherited connective tissue disorder and skin hyperextensibility, joint hypermobility, chronic joint and limb pain, blood vessel and tissue fragility are frequent symptoms. The aims of this study were to describe the degree to which individuals with EDS accept and cope with perceived limitations related to the syndrome, and to determine the relationships between acceptance of disability (AD), sense of coherence (SOC), functional health status and background data. Four questionnaires were mailed: the AD scale Modified (ADM), the SOC Scale, the Sickness Impact Profile (SIP) and a background form. The respondents with EDS were recruited through the EDS National Association in Sweden and the response rate was 74% (69 females and eight males). The Ethical Committee at Huddinge University Hospital (ref. no. 152/95) approved the study. This study has shown that the level of AD and SOC in individuals with EDS is similar to other patient groups, e.g. individuals with ostomy and with diabetes. Further, the SOC was in concordance with that of the general population. Those working full-time accepted their disability to a greater degree than those on sick leave or disability pension. A multiple regression analysis showed that a greater AD was associated with a higher level of SOC and a better functional health status. The SOC and SIP together accounted for 50% of the variance in the ADM. For health promotion in nursing practice it is important to have insight into the problem areas which may influence the overall life situation for an individual with EDS. A key issue for nurses is to identify individuals with low acceptance of their disease and/or low SOC in order to support these persons' adaptation process. Future research on EDS may be directed towards projects focusing on the development and implementation of models to strengthen the level of AD and SOC in this group.

  • 48. Berglund, Britta
    et al.
    Mattiasson, Anne-Cathrine
    Sophiahemmet Högskola.
    Randers, Ingrid
    Sophiahemmet Högskola.
    Dignity not fully upheld when seeking health care: experiences expressed by individuals suffering from Ehlers-Danlos syndrome2010Inngår i: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 32, nr 1, 1-7 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Aim. The principle of human dignity has assumed importance in ethics and constitutional law throughout the 20th century in the Western world. It calls for respect of each individual as unique, and of treating him or her as a subject, never as a mere object. As such, the principle constitutes an ethical cornerstone in health care. Patients suffering from Ehlers-Danlos syndrome (EDS) challenge medical care and knowledge in health-care professionals' as symptoms sometimes are vague. Individuals with this disorder have reported not being respected when seeking health care. Purpose. To describe encounters in health-care situations when individuals suffering from EDS experienced that their dignity was not fully upheld. A further aim was to describe the long-term consequences of these experiences. Method. A study-specific questionnaire was designed, where individuals with EDS described their encounters with health care from a personal perspective. Results. After qualitative content analysis, the following five categories were identified: 'Being ignored and belittled by health-care professionals,' 'Being assigned psychological and/or psychiatric explanations', 'Being treated and considered merely as an object', 'Being trespassed in one's personal sphere' and 'Being suspected of family violence'. Consequences of these encounters were 'Mistrusting the physician' and 'Risking bad health'. Conclusions. The memory of not being respected is substantial for individuals with EDS and can last for years. As a result, lack of trust for the health-care system is created and they may experience difficulties in future encounters with health care. Therefore, health-care professionals should base their actions on norms that protect human dignity and confirm each patient as a unique human being with resources and abilities to master their own life.

  • 49. Berglund, Britta
    et al.
    Nordström, Gun
    Hagberg, Catharina
    Mattiasson, Anne-Cathrine
    Sophiahemmet Högskola.
    Foot pain and disability in individuals with Ehlers-Danlos syndrome (EDS): impact on daily life activities2005Inngår i: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 27, nr 4, 164-9 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    PURPOSE: To investigate the amount and severity of podiatric problems in individuals with EDS as well as the consequences on daily life activities, and to compare these results with the results from a comparison group of the general population. METHOD: The Manchester Foot Pain and Disability Schedule (MFPDS) and a demographic and foot-specific form were mailed. RESULTS: One hundred and thirty-six individuals with EDS and 292 from the comparison group responded. The median MFPDS total score in the EDS group was 33 (range 17-49) (mean 32, SD 8) and in the comparison group 17 (range 17-41) (mean 19, SD 4) (P < 0.001). The items most frequently marked with 3 points in the EDS group were: 'I avoid standing for a long time', 'I catch the bus or use the care more often', and 'I get irritable when my feet hurt' (56, 46 and 43%, respectively). When comparing the NRS score (i.e. Numeric Rating Scale) regarding pain intensity between the EDS group (median 5) and the comparison group (median 0), a statistically significant difference was found (P < 0.001). Other foot problems than pain were reported by 73% (n = 100) of the EDS group and by 21% (n = 60) of the comparison group (P < 0.001). The presence of flat feet in the EDS group and the comparison group was reported by 55% (n = 75) and 8% (n = 23) respectively. CONCLUSION: Individuals' with EDS endure difficulties with their mobility due to their foot problems and related disability. It is therefore of utmost importance to find ways to assess the actual foot status for this group and to support the individuals with solutions to their problems with ambulation.

  • 50. Björklund, Ulla
    et al.
    Marsk, Anna
    Georgsson Öhman, Susanne
    Sophiahemmet Högskola.
    Does an information film about prenatal testing in early pregnancy affect women's anxiety and worries?2013Inngår i: Journal of Psychosomatic Obstetrics and Gynaecology, ISSN 0167-482X, E-ISSN 1743-8942, Vol. 34, nr 1, 9-14 s.Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Abstract Objective: To explore if an information film about prenatal examinations affects pregnant women's worry and anxiety. Methods: Randomized controlled study. The intervention was an information film about prenatal examinations. Data was collected in gestational week 26 by a questionnaire including the STAI (State-Trait Anxiety Inventory) instrument and further questions about worry. A total of 184 women in the intervention group and 206 in the control group filled in the questionnaire. Results: There were no statistically significant differences between the groups neither in state nor trait anxiety. Regarding worry about the possibility of something being wrong with the baby and worry about giving birth, there were no statistically significant differences between the groups. The women stated that to see the film increased their worry rather than decreased it. Conclusion: An informational film as additional information to complement written and verbal information about prenatal testing does not appear to increase women's anxiety and worries. However, the informational film may cause worry at the time of viewing which should be taken into consideration.

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