| 31. |
- Samuelsson, Maria, 1982-, et al.
(författare)
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Models of support to family members during the trajectory of cancer : a scoping review protocol.
- 2020
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Ingår i: BMJ Open. - : BMJ Publishing Group Ltd. - 2044-6055. ; 10:9
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Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION: A cancer diagnose, for example, colorectal cancer, not only affects the cancer-person stricken, but also the surrounding family. Thus, this scoping review intends to identify appropriate models of support that will guide the development of a model of support to family members during the trajectory of colorectal cancer.METHODS AND ANALYSIS: , and described by the Joanna Briggs Institute. All the stages will be conducted iteratively and reflexively. First, a search strategy will be developed with a librarian and applied in the following peer-reviewed databases: PubMed, Cumulative Index to Nursing and Allied Health Literature and PsycINFO. Additional searches will be performed in Google Scholar and SwePub for identification of grey literature and hand searched in the reference lists. Searches will be conducted from December 2019 to February 2020. A draft of the preliminary search strategy was performed in PubMed in November 2019. Subsequently, three members of the research team will independently screen all abstracts for relevance, as well as the full-text articles. Studies meeting the inclusion criteria will be critically evaluated using the Joanna Brigg Institute Critical Appraisal Tools. A descriptive summary of study characteristics and of the scoping review process will be presented, including a visual flow diagram. Lastly, a thematic analysis as presented by Braun and Clarke will be conducted. To enhance validity, contact nurses of persons with colorectal cancer will be provided an overview of the preliminary results.ETHICS AND DISSEMINATION: Being a secondary analysis, ethical approval is not needed for this study. The findings of the analysis will be used to inform the design of a future study aiming to develop a model of support and an upcoming scoping review, which will be published in a scientific journal and presented at relevant conferences.
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| 32. |
- Samuelsson, Maria, 1982-, et al.
(författare)
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Models of support to family members during the trajectory of cancer : A scoping review
- 2021
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Ingår i: Journal of Clinical Nursing. - : John Wiley & Sons. - 0962-1067 .- 1365-2702. ; 30:21-22, s. 3072-3098
-
Tidskriftsartikel (refereegranskat)abstract
- Aims and objectives To map the existing literature on support models provided to family members during the cancer trajectory. Background Cancer diagnosis, treatment and survivorship have a profound influence on the surrounding family members. This scoping review is part of the development of a support model for family members of persons diagnosed with colorectal cancer. Design The method was guided by the Arksey and O'Malley framework, described in the Joanna Briggs Institute guidelines, and the reporting is compliant with PRISMA-ScR Checklist. Searches were conducted in PubMed, CINAHL and PsycINFO from November 2019-February 2020 with no limitation in publication year or study design. Complementing searches were conducted in reference lists and for grey literature, followed by an additional search in September 2020. Inclusion criteria were primary research about support provided by health care, to family members, during cancer, of an adult person, in Swedish or English, of moderate or high methodological quality. Quality was assessed using the Joanna Briggs Institute critical appraisal tools. Data were extracted using a charting form. Result A total of 32 studies were included in the review describing 39 support models. Conclusion The mapping of the existing literature resulted in the identification of three themes of support models: psychoeducation, caregiver training and psychological support. In addition, that future research should target a specific diagnosis and trajectory phase as well as include family members and intervention providers in model development. Relevance for clinical practice Knowledge from the literature on both the needs of the family members and existing support models should be incorporated with the prerequisites of clinical practice. Clinical practice should also be complemented with structured assessments of family members' needs conducted regularly.
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| 33. |
- Samuelsson, Maria, 1982-, et al.
(författare)
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Translation, cultural adaptation, and psychometric testing of the supportive care needs survey for partners and caregivers for swedish family members of persons diagnosed with colorectal cancer
- 2023
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Ingår i: Journal of Patient-Reported Outcomes. - : Springer Nature. - 2509-8020. ; 7:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Colorectal cancer is the third most common cancer diagnosis globally and is increasing in both incidence and prevalence. Despite evidence showing that family members of persons diagnosed with cancer have supportive care needs, no validated questionnaire measuring the needs of family members of persons diagnosed with CRC exists in Swedish. Thus, the objective of the present study was to translate, culturally adapt, and evaluate the psychometric properties the Supportive Care Needs Survey - Partners and Caregivers 45.Methods: The translation and cultural adaptation followed a systematic yet iterative process. Firstly, the questionnaire was translated using a forward-backward approach. Secondly, face and content validity and comprehensibility were evaluated by two expert panels of colorectal cancer specialist nurses and family members, respectively. Lastly, the psychometric properties, validity, and reliability of the translated questionnaire were evaluated among 45 Swedish family members of persons diagnosed with colorectal cancer.Results: The face, content, and construct validity of the translated questionnaire were evaluated as satisfying. Moreover, psychometric evaluations showed high data quality and satisfactory internal consistency. However, the results also revealed unsolved issues regarding relevance, targeting, and internal consistency, as well as a probable scaling failure.Conclusion: The translated and adapted questionnaire can be used to identify family members unmet needs of support throughout the colorectal cancer trajectory. The questionnaire showed promising validity and reliability in the target population. However, it needs to be further evaluated in a larger sample, preferably involving factor analysis and stability over time.Plain language summary: Colorectal cancer is the third most common cancer diagnose globally. At times of cancer, also the health and wellbeing of the surrounding family members is negatively affected. As a result, family members of persons diagnosed with cancer report that they too need support. Still, no validated questionnaire that enable measurement of family members needs of support throughout the colorectal cancer trajectory existed in Swedish. Thus, the present study undertook the process of translation of a questionnaire from English to Swedish. Thereto, evaluated it among Swedish family members of persons diagnosed with colorectal cancer. The evaluation showed a successful translation and the translated questionnaire appeared reliable and useful for measuring the family members´ needs of support throughout the colorectal cancer trajectory. However, it requires further evaluation.
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| 34. |
- Svensson, Birgitta, et al.
(författare)
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“I Dread the Heart Surgery but it Keeps My Child Alive”—Experiences of Parents of Children with Right Ventricular Outflow Tract Anomalies during the Assessment for Cardiac Reoperation
- 2023
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Ingår i: Congenital Heart Disease. - : Artech House. - 1747-0803 .- 1747-079X. ; 18:3, s. 349-359
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Tidskriftsartikel (refereegranskat)abstract
- Background: Parents of children with complex right ventricular outflow tract (RVOT) anomalies are con-fronted with their child’s need for heart surgery early in life and repeated reoperations later on. Preoperative assessment needs to be performed whenever an indication for reoperation is suspected. The aim was to illuminate the experiences of parents of children diagnosed with RVOT anomalies, in particular, how they experience their child’s heart disease and everyday life during the assessment and after the decision on whether to perform a reo-peration. Method: Individual interviews (n = 27) were conducted with nine parents on three occasions between 2014 and 2016 and analyzed using reflexive thematic analysis. Results: The analysis resulted in the following five main coexisting themes: The heart surgery keeps my child alive illuminates parents’ experiences during and after the assessment and emphasizes that heart surgery, although dreaded, is central for their child’s survival; Everyday struggles illuminates the different struggles parents had to face to ensure that their child would be in the best possible condition; the remaining three themes, Unconditional love, Trust in life, and Togetherness, illuminate the ways in which the parents gained inner strength and confidence in their everyday lives. Conclusion: Although the parents were grateful for the assessment and had learned to navigate among the fears it aroused, they experi-enced several distressing situations during the assessment process that should be addressed. By inviting both the parents and their child to participate in the child’s care, individualized support can take into account the needs of both parents and child.
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| 35. |
- Svensson, Birgitta, et al.
(författare)
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"The only thing I wonder is when I will have surgery again" : everyday life for children with right ventricle outflow tract anomalies during assessment for heart surgery
- 2023
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Ingår i: Cardiology in the Young. - : Cambridge University Press. - 1047-9511 .- 1467-1107. ; 33:3, s. 396-401
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Tidskriftsartikel (refereegranskat)abstract
- Many children with complex right ventricle outflow tract anomalies such as Tetralogy of Fallot, common arterial trunk, and pulmonary atresia with ventricular septal defect require repeated heart surgeries early in life, but also later throughout their lifetime, thereby emphasising the importance of careful life-long follow-up. The need for repeated heart surgeries during childhood is recognised as a heavy burden on the child. Optimising the time point for re-intervention is important, since delaying re-intervention for these children can lead to complications such as ventricular arrhythmias, heart failure, and death. To this purpose, thorough pre-operative assessment (henceforth named as assessment) including clinical examination, echocardiography, MRI, and exercise test need to be performed whenever the indication for reoperation is suspected. It is likely to believe that children who are going through this kind of assessment that may lead to heart surgery need extra support. According to previous research, children with complex heart disease fear for the possibility of surgery and the thought of future repeated heart surgery is associated with anxiety. This might have an impact on children's everyday life and in research nowadays involving children with CHD, the focus has changed from survival to how these children experience their everyday life. Earlier studies have shown that they experience physical activities limitation and feelings of isolation, but no study has yet studied how children with right ventricle outflow tract anomalies experience their everyday life. To be able to provide support, studies are needed to explore how these children experience the period from assessment to decision, as well as the months thereafter. Therefore, the aim of this study was to explore how children diagnosed with complex right ventricle outflow tract anomalies experience their heart disease and their everyday life during the assessment and after the decision on whether to perform a new cardiac surgery.
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| 36. |
- Vallabh, S. M., et al.
(författare)
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Cerebrospinal fluid and plasma biomarkers in individuals at risk for genetic prion disease
- 2020
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Ingår i: Bmc Medicine. - : Springer Science and Business Media LLC. - 1741-7015. ; 18:1
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Tidskriftsartikel (refereegranskat)abstract
- Background Prion disease is neurodegenerative disease that is typically fatal within months of first symptoms. Clinical trials in this rapidly declining symptomatic patient population have proven challenging. Individuals at high lifetime risk for genetic prion disease can be identified decades before symptom onset and provide an opportunity for early therapeutic intervention. However, randomizing pre-symptomatic carriers to a clinical endpoint is not numerically feasible. We therefore launched a cohort study in pre-symptomatic genetic prion disease mutation carriers and controls with the goal of evaluating biomarker endpoints that may enable informative trials in this population. Methods We collected cerebrospinal fluid (CSF) and blood from pre-symptomatic individuals with prion protein gene (PRNP) mutations (N = 27) and matched controls (N = 16), in a cohort study at Massachusetts General Hospital. We quantified total prion protein (PrP) and real-time quaking-induced conversion (RT-QuIC) prion seeding activity in CSF and neuronal damage markers total tau (T-tau) and neurofilament light chain (NfL) in CSF and plasma. We compared these markers cross-sectionally, evaluated short-term test-retest reliability over 2-4 months, and conducted a pilot longitudinal study over 10-20 months. Results CSF PrP levels were stable on test-retest with a mean coefficient of variation of 7% for both over 2-4 months inN = 29 participants and over 10-20 months inN = 10 participants. RT-QuIC was negative in 22/23 mutation carriers. The sole individual with positive RT-QuIC seeding activity at two study visits had steady CSF PrP levels and slightly increased tau and NfL concentrations compared with the others, though still within the normal range, and remained asymptomatic 1 year later. T-tau and NfL showed no significant differences between mutation carriers and controls in either CSF or plasma. Conclusions CSF PrP will be interpretable as a pharmacodynamic readout for PrP-lowering therapeutics in pre-symptomatic individuals and may serve as an informative surrogate biomarker in this population. In contrast, markers of prion seeding activity and neuronal damage do not reliably cross-sectionally distinguish mutation carriers from controls. Thus, as PrP-lowering therapeutics for prion disease advance, "secondary prevention" based on prodromal pathology may prove challenging; instead, "primary prevention" trials appear to offer a tractable paradigm for trials in pre-symptomatic individuals.
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| 37. |
- Vejzovic, Vedrana, et al.
(författare)
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A private affair : children’s experiences prior to colonoscopy
- 2015
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Ingår i: Journal of Clinical Nursing. - : John Wiley & Sons. - 0962-1067 .- 1365-2702. ; 24:7-8, s. 1038-1047
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Tidskriftsartikel (refereegranskat)abstract
- Aims and objectives. To illuminate children’s experiences prior to colonoscopy. Background. It is well known that children need to be well prepared before undergoing stressful medical procedures, and the goal of such preparations should focus on minimising their level of anxiety. The clinical investigation of children with suspected inflammatory bowel disease involves several steps, with colonoscopy being routinely used to investigate the colon and the lower part of the small intestine. To minimise children’s anxiety during various medical procedures, it is important that information about their experiences is obtained directly from the children themselves. Design. A qualitative study. Method. The study was designed as a qualitative interview study involving 17 children aged 10–17 years undergoing colonoscopy at a children’s university hospital in Sweden. Verbatim transcripts were analysed using content analysis. Results. The children’s experiences prior to colonoscopy were identified as belonging to an overall theme, a private affair, and to four categories: preparing yourself, mastering the situation, reluctantly participating and feeling emotional support. Conclusion. This study shows that children’s experiences prior to colonoscopy are a private affair and that the preparation needs to be individually adapted for the ‘preprocedural’ preparation to be comprehended. Relevance to clinical practice. The children’s experiences ascertained in this study can contribute to a greater understanding of children’s needs prior to a colonoscopy and may provide professional care staff with the basis for future nursing assessments.
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| 38. |
- Vejzovic, Vedrana, et al.
(författare)
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Parents’ experiences when their child is undergoing an elective colonoscopy
- 2015
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Ingår i: Journal for Specialist sin Pediatric Nursing. - : John Wiley & Sons. - 1744-6155 .- 1539-0136. ; 20:2, s. 123-130
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Tidskriftsartikel (refereegranskat)abstract
- Purpose. The purpose was to illuminate parents’ experiences when their children are undergoing an elective colonoscopy performed using polyethylene glycol-based regimes for bowel preparation. Design and Methods. Individual interviews with 12 parents were performed and analysed using content analysis. Results. The parents’ experiences were structured into one theme: “Charged with conflicting emotions” with three categories: “Being forced to force,” “Losing one’s sense of being a parent” and “Standing without guidance.” Practice Implications. Understanding parents’ experiences can help healthcare staff guide parents in helping their children undergo a colonoscopy
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| 39. |
- Vejzovic, Vedrana, et al.
(författare)
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Polyethylene Glycol- or Sodium Picosulphate-Based Laxatives Before Colonoscopy in Children
- 2016
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Ingår i: Journal of Pediatric Gastroenterology and Nutrition - JPGN. - : Lamy, Wolters Kluwer. - 0277-2116 .- 1536-4801. ; 62:3, s. 414-419
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: The purpose of this randomised study was to compare the quality of bowel cleansing using either polyethylene glycol (PEG) or sodium picosulphate (NaPico) (primary outcome) in relation to the tolerability and acceptance of these laxatives among children and their caregivers (secondary outcome). Methods: The study was a randomised controlled trial that was conducted as an investigator-blinded study within the Department of Paediatrics of Ska°ne University Hospital in Malmo¨ , Sweden. A total of 72 children (10–18 years of age) were randomly placed into 1 of 2 groups (PEG or NaPico). The Ottawa Bowel Preparation Quality Score was used to evaluate the quality of bowel cleansing. A total of 2 different questionnaires were used to evaluate both the acceptability and tolerability of the laxatives. Results: In total, 71 children completed the bowel cleansing. Of these 71 cleanses, 67 protocols were analysed according to the Ottawa Bowel Preparation Quality Score. No significant difference in bowel cleansing quality was detected between the 2 groups. Rates of acceptability and tolerability were significantly higher in the NaPico group than in the PEG group. Conclusions: In the present study, both laxatives were found to be satisfactory in terms of aiding the performance of an uncomplicated and successful colonoscopy. NaPico was, however, more tolerable to the children than PEG, and both, the children and their caregivers, were more accepting of NaPico than of PEG. Consequently, NaPico can be recommended as the option for bowel cleansing in children ages 10 years and older. Key Words: bowel cleansing, children, colonoscopy, randomised controlled trial
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| 40. |
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