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Sökning: swepub > Göteborgs universitet > Sophiahemmet Högskola

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1.
  • Svedbo Engström, Maria, 1980, et al. (författare)
  • A disease-specific questionnaire for measuring patient-reported outcomes and experiences in the Swedish National Diabetes Register: Development and evaluation of content validity, face validity, and test-retest reliability
  • 2018
  • Ingår i: Patient Education and Counseling. - : Elsevier BV. - 0738-3991 .- 1873-5134. ; 101:1, s. 139-146
  • Tidskriftsartikel (refereegranskat)abstract
    • Objective: To describe the development and evaluation of the content and face validity and test-retest reliability of a disease-specific questionnaire that measures patient-reported outcomes and experiences for the Swedish National Diabetes Register for adult patients who have type 1 or type 2 diabetes. Methods: In this methodological study, a questionnaire was developed over four phases using an iterative process. Expert reviews and cognitive interviews were conducted to evaluate content and face validity, and a postal survey was administered to evaluate test-retest reliability. Results: The expert reviews and cognitive interviews found the disease-specific questionnaire to be understandable, with relevant content and value for diabetes care. An item-level content validity index ranged from 0.6-1.0 and a scale content validity/average ranged from 0.7-1.0. The fourth version, with 33 items, two main parts and seven dimensions, was answered by 972 adults with type 1 and type 2 diabetes (response rate 61%). Weighted Kappa values ranged from 0.31-0.78 for type 1 diabetes and 0.27-0.74 for type 2 diabetes. Conclusions: This study describes the initial development of a disease-specific questionnaire in conjunction with the NDR. Content and face validity were confirmed and test-retest reliability was satisfactory. Practice implications: With the development of this questionnaire, the NDR becomes a clinical tool that contributes to further understanding the perspectives of adult individuals with diabetes. (c) 2017 Elsevier B.V. All rights reserved.
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2.
  • Svedbo Engström, Maria, 1980, et al. (författare)
  • Health-related quality of life and glycaemic control among adults with type 1 and type 2 diabetes - a nationwide cross-sectional study
  • 2019
  • Ingår i: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 17:1
  • Tidskriftsartikel (refereegranskat)abstract
    • Background Health-related quality of life and glycaemic control are some of the central outcomes in clinical diabetes care and research. The purpose of this study was to describe the health-related quality of life and assess its association with glycaemic control in adults with type 1 and type 2 diabetes in a nationwide setting. Methods In this cross-sectional survey, people with type 1 (n = 2479) and type 2 diabetes (n = 2469) were selected at random without replacement from the Swedish National Diabetes Register. Eligibility criteria were being aged 18-80 years with at least one registered test of glycated haemoglobin (HbA(1c)) the last 12 months. The generic 36-item Short Form version 2 (SF-36v2) was answered by 1373 (55.4%) people with type 1 diabetes and 1353 (54.8%) with type 2 diabetes. Results Correlation analyses showed weak correlations between scores on the SF-36v2 and glycaemic control for both diabetes types. After the participants were divided into three groups based on their levels of HbA(1c), multivariate regression analyses adjusted for demographics, other risk factors and diabetes complications showed that among participants with type 1 diabetes, the high-risk group (>= 70 mmol/mol/8.6%) had statistically significantly lower means in five out of eight domains of the SF-36v2 and the mental component summary measure, as compared with the well-controlled group (< 52 mmol/mol/6.9%). Among the participants with type 2 diabetes, the high-risk group had the lowest statistically significantly means in seven domains and both summary measures. Conclusions Among people with type 1 and type 2 diabetes, adults with high-risk HbA(1c) levels have lower levels of health-related quality of life in most but not all domains of the SF-36v2. This finding was not explained by demographics, other risk factors, or diabetes complications. The weak individual-level correlations between HRQOL scores and levels of glycaemic control argues for the need to not focus exclusively on either HbA(1c) levels or HRQOL scores but rather on both because both are important parts of a complex, life-long, challenging condition.
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3.
  • Svedbo Engström, Maria, 1980, et al. (författare)
  • New Diabetes Questionnaire to add patients' perspectives to diabetes care for adults with type 1 and type 2 diabetes: nationwide cross-sectional study of construct validity assessing associations with generic health-related quality of life and clinical variables
  • 2020
  • Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 10:11
  • Tidskriftsartikel (refereegranskat)abstract
    • Objectives To study evidence for construct validity, the aim was to describe the outcome from the recently developed Diabetes Questionnaire, assess the associations of that outcome with clinical variables and generic health-related quality of life, and study the sensitivity to differences between clinically relevant groups of glycaemic control in adults with type 1 and type 2 diabetes in a nation-wide setting. Design Cross-sectional survey. Setting Swedish diabetes care clinics connected to the National Diabetes Register (NDR). Participants Among 2479 adults with type 1 diabetes and 2469 with type 2 diabetes selected at random from the NDR, 1373 (55.4%) with type 1 and 1353 (54.8%) with type 2 diabetes chose to participate. Outcome measures The Diabetes Questionnaire, the generic 36-item Short Form version 2 (SF-36v2) health survey and clinical variables. Results Related to the prespecified assumptions, supporting evidence for construct validity for the Diabetes Questionnaire was found. Supporting divergent validity, the statistically significant correlations with the clinical variables were few and weak. In relation to the SF-36v2 and in support of convergent validity, the strongest correlations were seen in the Diabetes Questionnaire scales General Well-being and Mood and Energy. In those scales, machine learning analyses showed that about 40%-45% of the variance was explained by the SF-36v2 results and clinical variables. In multiple regression analyses among three groups with differing levels of glycated haemoglobin adjusted for demographics, other risk factors, and diabetes complications, the high-risk group had, in support of sensitivity to clinically relevant groups, statistically significant lower scores than the well-controlled group in most Diabetes Questionnaire scales. Conclusions This nation-wide study shows that the Diabetes Questionnaire captures some generic health-related quality-of-life dimensions, in addition to adding diabetes-specific information not covered by the SF-36v2 and clinical variables. The Diabetes Questionnaire is also sensitive to differences between clinically relevant groups of glycaemic control.
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5.
  • Craftman, Åsa, et al. (författare)
  • Home care assistants' attitudes and perceptions of caring for people at the end of life in their homes in Sweden
  • 2022
  • Ingår i: Health & Social Care in the Community. - : Hindawi Limited. - 0966-0410 .- 1365-2524. ; 30:5, s. e2648-e2656
  • Tidskriftsartikel (refereegranskat)abstract
    • The ageing population is increasing worldwide, with older people often having multimorbidity and a need for help with activities and personal care. Home Care Assistants (HCAs) are central to the provision of care in the home. They meet older people approaching the end of life and their relatives. Little is known about HCAs attitudes towards caring for a dying person and how aspects such as education, age, earlier care experiences, care education and experience of caring for dying older people affect their attitudes. The aim was to describe HCAs' attitudes towards the care of dying persons living in their ordinary homes. This cross-sectional study used the Frommelt Attitude Toward Care of the Dying Scale (FATCOD) for data collection during December 2017 and January 2018, and descriptive statistics and regression analysis for data analysis. The participants were HCAs (n = 127, 96% of those eligible) in a municipality in central Sweden. An overall positive attitude was reported. About 32% lacked formal HCA education although 93% had experience of interacting with a dying person. Age, HCA education, internal palliative care education, number of years' experience and previous experience of caring for a dying person were independently associated with HCAs' attitudes. In the multivariate regression analysis, age and years of experience were the only significant predictors of HCAs' attitudes towards caring for dying care recipients. Young employees without HCA education and experience of a dying person might be vulnerable in situations involving caring for a dying person. Communicating about death and dying, forming a relationship with the care recipient and the family, and providing care when a person is dying can be challenging. Implications: Young employees without HCA education and experience of interacting with a dying person needs to be prepared for the situation. This needs to be considered by stakeholders and social and healthcare organisations.
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6.
  • Dunberger, Gail, et al. (författare)
  • Cancer survivors' perception of participation in a long-term follow-up study.
  • 2013
  • Ingår i: Journal of medical ethics. - : BMJ. - 1473-4257 .- 0306-6800. ; 39:1, s. 41-5
  • Tidskriftsartikel (refereegranskat)abstract
    • Every year medical researchers make contact with a large number of cancer survivors with the aim of evaluating cancer treatment. For this reason we decided to investigate how Swedish cancer survivors perceived their participation in research studies focusing on the long-term consequences of being a survivor of gynaecological or urinary bladder cancer. Data were collected by means of two study-specific postal questionnaires, both consisting of questions covering physical symptoms, well-being and the experience of being a cancer survivor. Both questionnaires also included questions evaluating the participants' experience of being research subjects. The questionnaires were developed in close co-operation with cancer survivors. The study population consisted of 1068 cancer survivors. Of these, 95% (n=1003) reported that they thought the study was valuable and 54% (n=559) that they had been positively affected by participating. Four per cent (n=39) expressed that they had been negatively affected by their participation in the study. The vast majority of the cancer survivors thought that participating in their particular study was valuable.
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7.
  • Eeg-Olofsson, Katarina, 1968, et al. (författare)
  • Patients' and Health Care Professionals' Perceptions of the Potential of Using the Digital Diabetes Questionnaire to Prepare for Diabetes Care Meetings: Qualitative Focus Group Interview Study
  • 2020
  • Ingår i: Journal of Medical Internet Research. - : JMIR Publications Inc.. - 1438-8871. ; 22:8
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: In effective diabetes management, it is important that providers and health care systems prioritize the delivery of patient-centered care and that they are respectful of and responsive to individual patient preferences and barriers. Objective: The objective of the study was to conduct focus group interviews to capture patients' and health care professionals' perceptions and attitudes regarding digital technology and to explore how the digital Diabetes Questionnaire can be used to support patient participation in diabetes care, as a basis for an implementation study. Methods: A qualitative study was conducted with six focus group discussions with diabetes specialist nurses and medical doctors (n=29) and four focus group discussions with individuals with diabetes (n=23). A semistructured focus group interview guide was developed, including probing questions. The data were transcribed verbatim, and qualitative content analysis was performed using an inductive approach. Results: Two main categories were revealed by the qualitative analysis: perceptions of digital technology and the digital questionnaire in diabetes management and care and perceptions of participation in diabetes care. An overarching theme that emerged from the focus group interviews was patients' and professionals' involvement in diabetes care using digital tools. Conclusions: The analysis identified important factors to consider when introducing the digital Diabetes Questionnaire in clinical use. Both professionals and patients need support and training in the practical implementation of the digital questionnaire, as well as the opportunity to provide feedback on the questionnaire answers.
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8.
  • Svedbo Engström, Maria, 1980, et al. (författare)
  • What is important for you? A qualitative interview study of living with diabetes and experiences of diabetes care to establish a basis for a tailored Patient-Reported Outcome Measure for the Swedish National Diabetes Register
  • 2016
  • Ingår i: Bmj Open. - : BMJ. - 2044-6055. ; 6:3
  • Tidskriftsartikel (refereegranskat)abstract
    • Objectives There is a growing emphasis on the perspective of individuals living with diabetes and the need for a more person-centred diabetes care. At present, the Swedish National Diabetes Register (NDR) lacks patient-reported outcome measures (PROMs) based on the perspective of the patient. As a basis for a new PROM, the aim of this study was to describe important aspects in life for adult individuals with diabetes. Design Semistructured qualitative interviews analysed using content analysis. Setting Hospital-based outpatient clinics and primary healthcare clinics in Sweden. Participants 29 adults with type 1 diabetes mellitus (DM) (n=15) and type 2 DM (n=14). Inclusion criteria: Swedish adults (18years) living with type 1 DM or type 2 DM (duration 5years) able to describe their situation in Swedish. Purposive sampling generated heterogeneous characteristics. Results To live a good life with diabetes is demanding for the individual, but experienced barriers can be eased by support from others in the personal sphere, and by professional support from diabetes care. Diabetes care was a crucial resource to nurture the individual's ability and knowledge to manage diabetes, and to facilitate life with diabetes by supplying support, guidance, medical treatment and technical devices tailored to individual needs. The analysis resulted in the overarching theme To live a good life with diabetes' constituting the two main categories How I feel and how things are going with my diabetes' and Support from diabetes care in managing diabetes' including five different categories. Conclusions Common aspects were identified including the experience of living with diabetes and support from diabetes care. These will be used to establish a basis for a tailored PROM for the NDR.
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9.
  • Åhlund, Susanne, et al. (författare)
  • Midwives experiences of participating in a midwifery research project: A qualitative study
  • 2018
  • Ingår i: Women and Birth. - : Elsevier BV. - 1871-5192 .- 1878-1799. ; 31:2, s. e115-e121
  • Tidskriftsartikel (refereegranskat)abstract
    • Problem and background: In an earlier research project midwives were asked to perform women-centered care focusing on the assumption that the physiological process in the second stage of labour could be trusted and that the midwives role should be encouraging and supportive rather than instructing. There is no knowledge about how midwives participating in such a research project, uses their skills and experience from the study in their daily work. Aim: The aim in this study was to investigate how midwives experienced implementing woman-centered care during second stage of labour. Methods: A qualitative study was designed. Three focus groups and two interviews were conducted. The material was analysed using content analysis. Findings: The participating midwives' experiences were understood as increased awareness of their role as midwives. The overarching theme covers three categories 1) establishing a new way of working, 2) developing as midwife, 3) being affected by the prevailing culture. The intervention was experienced as an opportunity to reflect and strengthen their professional role, and made the midwives see the women and the birth in a new perspective. Conclusions: Implementing woman-centered care during second stage of labour gave the midwives an opportunity to develop in their professional role, and to enhance their confidence in the birthing women and her ability to have a physiological birth. To promote participation in, as well as conduct midwifery research, can enhance the development of the midwives professional role as well as contribute new knowledge to the field.
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10.
  • Jalmsell, L, et al. (författare)
  • Hematopoietic stem cell transplantation in children with cancer and the risk of long-term psychological morbidity in the bereaved parents
  • 2011
  • Ingår i: Bone Marrow Transplantation. - : Springer Science and Business Media LLC. - 0268-3369 .- 1476-5365. ; 46:8, s. 1063-70
  • Tidskriftsartikel (refereegranskat)abstract
    • We have investigated whether hematopoietic stem cell transplantation (HSCT) before the death of children with cancer has a long-term effect on the physical and psychological well-being of the parents. A nationwide questionnaire was sent out to all bereaved parents in Sweden who had lost a child due to a malignancy from 1992 to 1997. Self-reported levels of anxiety, depression and quality of life as well as overall psychological and physical well-being in bereaved parents of children who underwent HSCT were compared with bereaved parents whose children did not receive a transplant. Bereaved parents whose children underwent HSCT had, according to a visual digital scale, an increased relative risk (RR) of long-term anxiety (RR 1.5; 95% confidence interval (CI) 1.0-2.1), poor psychological well-being (RR1.3; 95% CI 1.1-1.5), low quality of life (RR 1.4; 95% CI 1.2-1.7) and poor physical health (RR 1.3; 95% CI 1.1-1.5), whereas the State-Trait Anxiety Inventory and 'The Göteborg Quality of Life Instrument' were non-significantly increased (RR 1.3; 95% CI 0.8-2.3 and RR 1.7; 95% CI 0.9-3.3, respectively). The risks of these consequences were further augmented in case of multiple HSCT. We suggest that bereaved parents of children undergoing HSCT may be at greater risk of decreased psychological well-being than other bereaved parents of children with cancer.Bone Marrow Transplantation advance online publication, 22 November 2010; doi:10.1038/bmt.2010.287.
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