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Publications (10 of 135) Show all publications
Olsson, M., Steineck, G., Enskär, K., Wilderäng, U. & Jarfelt, M. (2019). Adolescent and young adult cancer survivors' perceptions of participating in a survey - Ethical and methodological considerations. European Journal of Oncology Nursing, 39, 55-61
Open this publication in new window or tab >>Adolescent and young adult cancer survivors' perceptions of participating in a survey - Ethical and methodological considerations
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2019 (English)In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 39, p. 55-61Article in journal (Refereed) Published
Abstract [en]

PURPOSE: The aim of this study was to understand patient-reported perception of participation in a population-based web-survey focusing on sensitive issues for adolescent and young adult cancer survivors.

METHOD: A population-based web survey for adolescent and young adult cancer survivors including a matched control group. Adolescent and young adult cancer survivors from the population-based Swedish National Cancer Registry from four of the six register holders at Regional Cancer Centers in Sweden. Controls were randomly identified from the Swedish National Population registry, from the same register holders.

RESULT: Of 729 eligible participants, 540 completed the survey i.e. 74% participation rate. The study population included 285 adolescent and young adult cancer survivors and 255 matched controls. None of the participants answered that the survey had a very negative impact on them and a minority of 43 (7.9%) of the 540 responded that they were mildly negatively affected by their participation in the study. There was a no significant difference between patients and controls regarding the negative effect of the participation (p = 0.29). Positive experiences of participating in the study were widely expressed and most participants (95%) found the study valuable.

CONCLUSIONS: These findings suggest that the benefits clearly outweigh the risks when adolescent and young adult cancer survivors participate in surveys including sensitive and trauma-related aspects, given that the study design is ethically sound and participants are approached carefully. We also present a modified ethical protocol for epidemiological surveys on adolescents and young adult cancer survivors.

Place, publisher, year, edition, pages
Elsevier, 2019
Keywords
Adolescent and young adult, Cancer survivor, Ethics, Methodological considerations, Survey
National Category
Cancer and Oncology
Identifiers
urn:nbn:se:hj:diva-43454 (URN)10.1016/j.ejon.2019.02.001 (DOI)000462419500008 ()30850139 (PubMedID)2-s2.0-85061357940 (Scopus ID)
Available from: 2019-04-11 Created: 2019-04-11 Last updated: 2019-04-11Bibliographically approved
Enskär, K., Darcy, L., Björk, M., Knutsson, S. & Huus, K. (2019). Experiences of Young Children With Cancer and Their Parents With Nurses' Caring Practices During the Cancer Trajectory. Journal of Pediatric Oncology Nursing, Article ID 1043454219874007.
Open this publication in new window or tab >>Experiences of Young Children With Cancer and Their Parents With Nurses' Caring Practices During the Cancer Trajectory
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2019 (English)In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, article id 1043454219874007Article in journal (Refereed) Epub ahead of print
Abstract [en]

Children with cancer require repeated hospitalizations and the family's everyday life and routines undergo change. Concrete descriptions of how nurses act when caring for children with cancer throughout the various phases of care and treatment are sparsely highlighted in the literature. The aim of this study was to describe young children with cancer and their parents' experiences of nurses' caring practices over a 3-year period, from diagnosis to follow-up. This study is based on semistructured interviews with 25 children newly diagnosed with cancer, aged 1 to 6 years, and their parents, connected to a pediatric oncology unit in Sweden. Child and parent data were analyzed with a deductive content analysis using Swanson's theory of caring. The result shows that nurse care practices directed toward young children with cancer and their parents are to some extent similar across a 3-year period from diagnosis to follow-up but also differ in some ways. Nurses' caring practices aim to support children and parents in the transition to a "new normal." Child- and family-friendly care processes include the following: creating hope and a trustful relationship, asking rather than assuming, providing knowledge and information, performing tasks skillfully, displaying an interest in the child's and parents' life outside the hospital, and helping the family to trust in the future and other health care providers. Based on these results, we recommend the development of a standardized and structured nursing care plan or clinical guideline with detailed information on how to carry out clinical nurse care practices in the different phases.

Place, publisher, year, edition, pages
Sage Publications, 2019
Keywords
Swanson caring theory, cancer, caring, children
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-46751 (URN)10.1177/1043454219874007 (DOI)000488438000001 ()31526068 (PubMedID)2-s2.0-85074264023 (Scopus ID)
Available from: 2019-10-30 Created: 2019-10-30 Last updated: 2019-11-12
Golsäter, M., Enskär, K. & Knutsson, S. (2019). Parents’ perceptions of how nurses care for children as relatives of an ill patient: Experiences from an oncological outpatient department. European Journal of Oncology Nursing, 39, 35-40
Open this publication in new window or tab >>Parents’ perceptions of how nurses care for children as relatives of an ill patient: Experiences from an oncological outpatient department
2019 (English)In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 39, p. 35-40Article in journal (Refereed) Published
Abstract [en]

Purpose:

Research has shown that a child's knowledge about what is happening to a parent when he/she has a cancer disease is crucial to the child's health and wellbeing. Therefore the purpose of this study was to explore parents’ perceptions of how nurses in clinical practice care for children as relatives when one parent in the family has a cancer disease.

Method:

A qualitative explorative design with interviews was used. Altogether 28 parents (17 patients and 11 partners) were interviewed. The transcripts from the interviews were subjected to qualitative content analysis.

Results:

The parents perceive that the nurses make efforts to support the child as well as them as parents, but feel that the care needs to be more tailored to the specific child and his/her situation. The children are initially invited, generally informed and seen by the nurses, but the parents perceive that they themselves need repeated support and advice over time to uphold their parental responsibility for caring for their children during the illness trajectory.

Conclusion:

The parents argue for the importance of receiving repeated advice and support for how to talk to their children about the disease and treatment. The parents describe how the nurses were helpful by asking after the children and explaining the value of their visiting the hospital.

Place, publisher, year, edition, pages
Churchill Livingstone, 2019
Keywords
Children as relatives, Co-production, Nursing, Parents, Qualitative research
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-43114 (URN)10.1016/j.ejon.2019.01.004 (DOI)000462419500005 ()30850136 (PubMedID)2-s2.0-85060543265 (Scopus ID)
Available from: 2019-02-21 Created: 2019-02-21 Last updated: 2019-04-11Bibliographically approved
Björklund, A.-C., Granlund, M., Santacroce, S. J., Enskär, K. & Björk, M. (2019). The Documentation of Everyday Functioning in Children with Brain Tumors in Medical Care, Habilitation Services and School - is There a Coherent Description?. Pediatric Blood & Cancer, 66(4, SI), S437-S437
Open this publication in new window or tab >>The Documentation of Everyday Functioning in Children with Brain Tumors in Medical Care, Habilitation Services and School - is There a Coherent Description?
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2019 (English)In: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 66, no 4, SI, p. S437-S437Article in journal, Meeting abstract (Refereed) Published
Place, publisher, year, edition, pages
John Wiley & Sons, 2019
National Category
Cancer and Oncology Hematology Pediatrics
Identifiers
urn:nbn:se:hj:diva-46828 (URN)000488458005010 ();HHJCHILDIS;HLKCHILDIS (Local ID);HHJCHILDIS;HLKCHILDIS (Archive number);HHJCHILDIS;HLKCHILDIS (OAI)
Available from: 2019-11-19 Created: 2019-11-19 Last updated: 2019-11-19Bibliographically approved
Björklund, A.-C., Granlund, M., Santacroce, S. J., Enskär, K. & Björk, M. (2019). The documentation of everyday functioning in children with brain tumors in medical care, habilitation services and school – is there a coherent description?. In: : . Paper presented at The 51th Congress of the “Société Internationale d’Oncologie Pédiatrique” (SIOP), October 23-26, 2019, Lyon, France.
Open this publication in new window or tab >>The documentation of everyday functioning in children with brain tumors in medical care, habilitation services and school – is there a coherent description?
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2019 (English)Conference paper, Published paper (Refereed)
National Category
Cancer and Oncology Pediatrics
Identifiers
urn:nbn:se:hj:diva-46992 (URN)
Conference
The 51th Congress of the “Société Internationale d’Oncologie Pédiatrique” (SIOP), October 23-26, 2019, Lyon, France
Available from: 2019-12-06 Created: 2019-12-06 Last updated: 2019-12-06Bibliographically approved
Darcy, L., Enskär, K. & Björk, M. (2019). Young children's experiences of living an everyday life with cancer – A three year interview study. European Journal of Oncology Nursing, 39, 1-9
Open this publication in new window or tab >>Young children's experiences of living an everyday life with cancer – A three year interview study
2019 (English)In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 39, p. 1-9Article in journal (Refereed) Published
Abstract [en]

Purpose

The young child's experiences of living with cancer are crucial to providing evidence based care. This study explores and describes experiences of everyday life of young children with cancer, over a three year period from diagnosis.

Method

This is a longitudinal, inductive interview study with young children with cancer, and their parents. Interviews from shortly after diagnosis, six and 12 months after diagnosis have been reanalysed. Interviews with the same children and their parents from 18 to 36 months after diagnosis have been analysed for the first time in the present paper. A longitudinal temporal analysis at category level for five synchronic data sets forms the basis for the results.

Results

The child living with cancer over a three year period is described as a child apart, striving to live an everyday life. This description is built on three categories: I want to be a child like any other, I need security and control and I feel lonely and left out. Young children with cancer actively strive to understand their illness, participate in care and live an ordinary everyday life- but with ongoing feelings of social isolation and loneliness.

Conclusions

Young children with cancer need access to and ongoing contact with peers and preschool. A structured follow-up throughout the cancer trajectory and not just during active treatment, is necessary. A child-centred philosophy of care would guide the child towards attainment of health and wellbeing.

Place, publisher, year, edition, pages
Elsevier, 2019
Keywords
Childhood cancer, Everyday life, Young child, Longitudinal
National Category
Cancer and Oncology Nursing
Identifiers
urn:nbn:se:hj:diva-42409 (URN)10.1016/j.ejon.2018.12.007 (DOI)000462419500001 ()30850132 (PubMedID)2-s2.0-85059446147 (Scopus ID)
Available from: 2019-01-02 Created: 2019-01-02 Last updated: 2019-04-11Bibliographically approved
Herngren, B., Stenmarker, M., Enskär, K. & Hägglund, G. (2018). Outcomes after slipped capital femoral epiphysis: a population-based study with three-year follow-up.. Journal of Children's Orthopaedics, 12(5), 434-443
Open this publication in new window or tab >>Outcomes after slipped capital femoral epiphysis: a population-based study with three-year follow-up.
2018 (English)In: Journal of Children's Orthopaedics, ISSN 1863-2521, E-ISSN 1863-2548, Vol. 12, no 5, p. 434-443Article in journal (Refereed) Published
Abstract [en]

Purpose: To evaluate outcomes three years after treatment for slipped capital femoral epiphysis (SCFE): development of a vascular necrosis (AVN), subsequent surgery, hip function and the contralateral hip.

Methods: This prospective cohort study included a total national population of 379 children treated for SCFE between 2007 and 2013. A total of 449 hips treated for SCFE and 151 hips treated with a prophylactic fixation were identified. The Barnhöft questionnaire, a valid patient-reported outcome measure (PROM), was used.

Results: In all, 90 hips had a severe slip, 61 of these were clinically unstable. AVN developed in 25 of the 449 hips. Six of 15 hips treated with capital realignment developed AVN. A peri-implant femur fracture occurred in three slipped hips and in two prophylactically pinned hips. In three of these five hips technical difficulties during surgery was identified. In 43 of 201 hips scheduled for regular follow-up a subsequent SCFE developed in the contralateral hip. Implant extraction after physeal closure was performed in 156 of 449 hips treated for SCFE and in 51 of 151 prophylactically fixed hips. Children with impaired hip function could be identified using the Barnhöft questionnaire.

Conclusion: Fixation in situ is justified to remain as the primary treatment of choice in SCFE. Overweight is more common in children with SCFE than in the average population. Prophylactic fixation is a safe procedure when performed using a correct technique. The number of patients who developed AVN after capital realignment is of concern. We recommend rigorous follow-up of both hips, including PROM evaluation, until physeal closure.

Level of Evidence: II - prospective cohort study.

Place, publisher, year, edition, pages
British Editorial Society of Bone and Joint Surgery, 2018
Keywords
complications, outcome, patient-reported outcome measures, slipped capital femoral epiphysis
National Category
Orthopaedics
Identifiers
urn:nbn:se:hj:diva-42353 (URN)10.1302/1863-2548.12.180067 (DOI)000446125800003 ()30294367 (PubMedID)
Available from: 2018-12-19 Created: 2018-12-19 Last updated: 2018-12-19Bibliographically approved
Olsson, M., Enskär, K., Steineck, G., Wilderäng, U. & Jarfelt, M. (2018). Self-Perceived physical attractiveness in relation to scars among adolescent and young adult cancer survivors: A population-based study. Journal of Adolescent and Young Adult Oncology, 7(3), 358-366
Open this publication in new window or tab >>Self-Perceived physical attractiveness in relation to scars among adolescent and young adult cancer survivors: A population-based study
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2018 (English)In: Journal of Adolescent and Young Adult Oncology, ISSN 2156-5333, Vol. 7, no 3, p. 358-366Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE: Cancer treatment may result in various effects that last long after treatment has been concluded. The purpose of this study was to explore to what extent scars affect adolescents and young adults postcancer treatment.

METHODS: In this population-based study, a study-specific questionnaire was developed by a method used in several previous investigations carried out by our research group, Clinical Cancer Epidemiology. Question development involved expert validation by professionals from oncology units, midwives, epidemiologists, and statisticians. The questionnaire was developed in collaboration with adolescent and young adult cancer survivors. The topics covered in the questionnaire were as follows: psychosocial health, body image and sexuality, fertility, education, work, and leisure. The web-based questionnaire was sent to teenage and young adult cancer survivors and matched controls in Sweden.

RESULTS: In this study, the relative risk of feeling less attractive due to scars was higher both for female cancer survivors RR 1.48, CI 1.05-2.08 and male cancer survivors RR 1.90, CI 1.15-3.13 compared to controls. The feeling of attractiveness was negatively related to the size of scars in both cancer and control groups. In a logistic regression analysis, significant associations were found between age, education, exercise, depression, and the feeling of low attractiveness due to scars.

CONCLUSIONS: The results of this study provide a basis for care interventions for teenage and young adult cancer patients during and after cancer treatment. Further research is needed on care interventions to reduce, if possible, the impact of scars.

Place, publisher, year, edition, pages
Mary Ann Liebert, 2018
Keywords
attractiveness, body image, cancer survivors, physical scars, treatment-related sequelae
National Category
Cancer and Oncology
Identifiers
urn:nbn:se:hj:diva-38826 (URN)10.1089/jayao.2017.0089 (DOI)000423516000001 ()29373051 (PubMedID)2-s2.0-85048301422 (Scopus ID)
Available from: 2018-02-13 Created: 2018-02-13 Last updated: 2018-07-04Bibliographically approved
Olsson, M., Steineck, G., Enskär, K., Wilderäng, U. & Jarfelt, M. (2018). Sexual function in adolescent and young adult cancer survivors - a population-based study. Journal of cancer survivorship, 12(4), 450-459
Open this publication in new window or tab >>Sexual function in adolescent and young adult cancer survivors - a population-based study
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2018 (English)In: Journal of cancer survivorship, ISSN 1932-2259, E-ISSN 1932-2267, Vol. 12, no 4, p. 450-459Article in journal (Refereed) Published
Abstract [en]

PURPOSE: Previous research has established that treatments for cancer can result in short- and long-term effects on sexual function in adult cancer patients. The purpose was to investigate patient-reported physical and psychosexual complications in adolescents and young adults after they have undergone treatment for cancer.

METHODS: In this population-based study, a study-specific questionnaire was developed by a method used in several previous investigations carried out by our research group, Clinical Cancer Epidemiology. The questionnaire was developed in collaboration with adolescent and young adult cancer survivors (15-29 years) and validated by professionals from oncology units, midwives, epidemiologists, and statisticians. The topics covered in the questionnaire were psychosocial health, body image, sexuality, fertility, education, work, and leisure. The web-based questionnaire was sent to adolescent and young adult cancer survivors and matched controls in Sweden.

RESULTS: In this study, adolescent and young adult cancer survivors (15-29 years) showed low satisfaction regarding sexual function compared to controls (P < 0.01). Female adolescent and young adult cancer survivors had a statistically significant lower frequency of orgasm during sexual activity than the controls (P < 0.01). Male adolescent and young adult cancer survivors had statistically significant lower sexual desire than the controls (P = 0.04).

CONCLUSIONS: We found that adolescent and young adult cancer survivors perceived themselves as being less satisfied with their sexual function than matched population-based controls.

IMPLICATIONS FOR CANCER SURVIVORS: Adolescent and young adult cancer survivors need psychological rehabilitation support from the health care profession during and after cancer treatment to help them to reduce their reported poor sexual function to enhance a good sexual quality of life.

Place, publisher, year, edition, pages
Springer, 2018
Keywords
Adolescents and young adults, Late effects, Sexual function, Survivorship
National Category
Cancer and Oncology
Identifiers
urn:nbn:se:hj:diva-39287 (URN)10.1007/s11764-018-0684-x (DOI)000439477500003 ()29508213 (PubMedID)2-s2.0-85045129889 (Scopus ID)
Available from: 2018-04-27 Created: 2018-04-27 Last updated: 2018-08-23Bibliographically approved
Björkman, B., Gimbler Berglund, I., Faresjö, M., Enskär, K. & Huus, K. (2017). Are radiographers prepared to meet children with special needs, when seen for an examination?. Paper presented at 62nd Nordic Congress of Radiology & 23rd Nordic Congress of Radiography. Acta Radiologica, 58(1 Suppl.), 16-16
Open this publication in new window or tab >>Are radiographers prepared to meet children with special needs, when seen for an examination?
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2017 (English)In: Acta Radiologica, ISSN 0284-1851, E-ISSN 1600-0455, Vol. 58, no 1 Suppl., p. 16-16Article in journal, Meeting abstract (Refereed) Published
Abstract [en]

Introduction: Anxiety is often experienced by children undergoing health care procedures, and children with autism spectrum disorders (ADS) experience more anxiety than typically developed children. A prerequisite for obtaining an optimum procedure is firstly based on the health care provider’s knowledge about children with ASD, but may also depend on the use of guidelines. Two previous national surveys showed, that none radiology or paediatric departments and a minority of anaesthesiology departments throughout Sweden use specific guidelines when seeing children with ASD. Following, the purpose was to develop guidelines to use when caring for and preparing children with ASD in those settings.

Methods: A modified Delphi method was used, including19 experts identified from the two afore mentioned surveys. The questions considered in the process, proceeded from previous research and the results from the surveys. The experts’ responses regarding the importance of each item, were analysed and scrutinized between each round.

Results: The Delphi process resulted in guidelines consisting of 15 items and a checklist with 16 aspects. The items cover the areas: planning and involving parents, features in the environment, use of time, communication, thehealth care professionals. The checklist covers the child’spattern of communication, anxiety, sensory stimuli, special interests and likes/dislikes.

Conclusions: To obtain an optimum caring encounter when a child with ASD is seen in the preoperative and radiology setting, a meticulous planning is important and the environment should be adjusted for the needs of the child. To accomplish this, guidelines need to be in place and be followed.

Place, publisher, year, edition, pages
Sage Publications, 2017
National Category
Nursing Radiology, Nuclear Medicine and Medical Imaging
Identifiers
urn:nbn:se:hj:diva-37303 (URN)000404621700013 ()
Conference
62nd Nordic Congress of Radiology & 23rd Nordic Congress of Radiography
Available from: 2017-09-13 Created: 2017-09-13 Last updated: 2018-04-23Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0001-8596-6020

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