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Engvall, Gunn
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Kassa, A.-M., Engstrand Lilja, H. & Engvall, G. (2019). From crisis to self-confidence and adaptation; Experiences of being a parent of a child with VACTERL association: A complex congenital malformation. PLoS ONE, 14(4), Article ID e0215751.
Öppna denna publikation i ny flik eller fönster >>From crisis to self-confidence and adaptation; Experiences of being a parent of a child with VACTERL association: A complex congenital malformation
2019 (Engelska)Ingår i: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 14, nr 4, artikel-id e0215751Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

Aim Knowledge is scarce regarding mothers' and fathers' experiences of being a parent of a child with VACTERL association-a complex malformation. The aim of the study was to describe experiences of being a parent of a child with VACTERL association. Method Semi-structured interviews were performed with ten mothers and nine fathers face-to-face or by telephone and analyzed by using Qualitative content analysis. Results The parents described crisis reactions at the discovery of malformations in their child. Involvement in care was reported from the initial hospital admission until actively taking responsibility for treatments at home. Eventually the health condition became an integrated part of everyday life. The parents expressed the importance of meeting other families with a child with VACTERL. Descriptions were given of more or less professionalism with perceived discrepancies of knowledge and experience between the healthcare professionals in the tertiary hospital and those in the local hospital. Difficulties in receiving medical support during the initial period at home were described. Furthermore, emotional support and practical arrangements regarding parental accommodation and transportation varied. Conclusion Being a parent of a child with VACTERL association involves crisis, mixed emotional reactions and shared responsibility for the child ' s treatment and care with the professional care providers. Psychological processing, good medical care and support from experts, and peer support from other parents is essential in the parents' struggle to reach self-confidence and adaptation. A care plan with individualized tailored care for each child including a training and support plan for the parents is warranted. To reduce the described discrepancies in knowledge and experience between the local and tertiary hospital, video sessions with the parents and responsible professionals at the local and tertiary hospital could be an appropriate mode of transferring information at discharge and follow up of the child.

Ort, förlag, år, upplaga, sidor
PUBLIC LIBRARY SCIENCE, 2019
Nationell ämneskategori
Omvårdnad
Identifikatorer
urn:nbn:se:uu:diva-383190 (URN)10.1371/journal.pone.0215751 (DOI)000465019900049 ()31002700 (PubMedID)
Tillgänglig från: 2019-07-24 Skapad: 2019-07-24 Senast uppdaterad: 2019-08-21Bibliografiskt granskad
Ångström-Brännström, C., Lindh, V., Nyholm, T., Lindh, J. & Engvall, G. (2019). Staff's Experiences of Preparing and Caring for Children With Cancer and Their Families During the Child's Radiotherapy. Cancer Nursing, 42(5), E10-E18
Öppna denna publikation i ny flik eller fönster >>Staff's Experiences of Preparing and Caring for Children With Cancer and Their Families During the Child's Radiotherapy
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2019 (Engelska)Ingår i: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 42, nr 5, s. E10-E18Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

Background: Approximately one-third of children diagnosed with cancer are treated with radiotherapy (RT). Staff experiences of preparing and distracting the children and their families during a child’s RT are sparsely described.

Objective: The aim of this study was to describe staff experiences of preparing and caring for children with cancer and their families during the child’s RT.

Intervention/Methods: Semistructured interviews with staff were performed at 3 Swedish RT centers. The interviews were analyzed using inductive qualitative content analysis.

Results: The analysis revealed 5 categories summarizing the staff members’ experiences. These include the following: experiences of various emotions; care for the child and the child’s family; commitments before, during, and after RT; organizational issues; and experiences of the intervention and suggestions for improvement.

Conclusions: The preparatory intervention facilitated the ability of staff members to conduct their work, although the intervention should be specifically tailored to each child. Meeting children and their families and providing care to both during RT were challenging. The staff strived to provide optimal care for each child and family. Interdisciplinary teamwork and organizational acceptance for the importance of preparation and distraction were essential.

Implications for Practice: A future challenge will be to provide opportunities for all staff involved in the treatment of children with cancer to develop their skills continuously in order to provide high-quality preparation and distraction to all children undergoing RT, regardless of the geographical location of the RT center.

Nyckelord
Children, Distraction, Experiences, Families, Interviews, Preparation, Qualitative content analysis, Radiotherapy, Staff
Nationell ämneskategori
Cancer och onkologi Omvårdnad
Identifikatorer
urn:nbn:se:uu:diva-370151 (URN)10.1097/NCC.0000000000000635 (DOI)000485022700002 ()30085946 (PubMedID)
Forskningsfinansiär
Barncancerfonden
Tillgänglig från: 2018-12-19 Skapad: 2018-12-19 Senast uppdaterad: 2019-10-15Bibliografiskt granskad
Engvall, G., Lindh, V., Mullaney, T., Nyholm, T., Lindh, J. & Ångström-Brännström, C. (2018). Children's experiences and responses towards an intervention for psychological preparation for radiotherapy.. Radiation Oncology, 13, Article ID 9.
Öppna denna publikation i ny flik eller fönster >>Children's experiences and responses towards an intervention for psychological preparation for radiotherapy.
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2018 (Engelska)Ingår i: Radiation Oncology, ISSN 1748-717X, E-ISSN 1748-717X, Vol. 13, artikel-id 9Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

BACKGROUND: Children can experience distress when undergoing radiotherapy as a reaction to being scared of and unfamiliar with the procedure. The aim was to evaluate children's experiences and responses towards an intervention for psychological preparation for radiotherapy.

METHODS: A case control design with qualitative content analysis of semi-structured interviews and statistical analysis of anxiety ratings were used for evaluating a strategy for psychological preparation and distraction. Fifty-seven children aged 2 to 18 years and their parents participated - 30 children in the baseline group and 27 in the intervention group. Child interviews were performed and the child and their parents rated the child's anxiety.

RESULTS: The intervention was most appropriate for the younger children, who enjoyed the digital story, the stuffed animal and training with their parents. There were some technical problems and the digital story was not detailed enough to fit exactly with various cancer diagnoses. Children described suggestions for improvement of the intervention. The ratings of the child's anxiety during radiation treatment showed no differences between the baseline group and the intervention group.

CONCLUSIONS: The children of all the age groups experienced their interventions as positive. The strength of the intervention was that it encouraged interaction within the family and provided an opportunity for siblings and peers to take part in what the child was going through. Future research on children's experiences to interventions should be encouraged. The intervention and the technical solutions could improve by further development.

Nyckelord
Childhood cancer, Children’s experiences, Distraction, Psychological preparation, Radiotherapy
Nationell ämneskategori
Medicin och hälsovetenskap
Identifikatorer
urn:nbn:se:uu:diva-343398 (URN)10.1186/s13014-017-0942-5 (DOI)000423350200001 ()29357940 (PubMedID)
Forskningsfinansiär
Barncancerfonden
Anmärkning

De två första författarna delar på förstaförfattarskapet.

Tillgänglig från: 2018-02-27 Skapad: 2018-02-27 Senast uppdaterad: 2018-03-07Bibliografiskt granskad
Almblad, A.-C., Målqvist, M. & Engvall, G. (2018). From skepticism to assurance and control: Implementation of a patient safety system at a pediatric hospital in Sweden. PLoS ONE, 13(11), Article ID e0207744.
Öppna denna publikation i ny flik eller fönster >>From skepticism to assurance and control: Implementation of a patient safety system at a pediatric hospital in Sweden
2018 (Engelska)Ingår i: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 13, nr 11, artikel-id e0207744Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

BACKGROUND: The use of evidence-based practice among healthcare professionals directly correlates to better outcomes for patients and higher professional satisfaction. Translating knowledge in practice and mobilizing evidence-based clinical care remains a continuing challenge in healthcare systems across the world.

PURPOSE: To describe experiences from the implementation of an Early Detection and Treatment Program for Children (EDT-C) among health care professionals at a pediatric hospital in Sweden.

DESIGN AND METHODS: Sixteen individual interviews were conducted with physicians, nurses and nurse assistants, which of five were instructors. Data were analyzed with qualitative content analysis.

RESULTS: An overarching theme was created: From uncertainty and skepticism towards assurance and control. The theme was based on the content of eight categories: An innovation suitable for clinical practice, Differing conditions for change, Lack of organizational slack, Complex situations, A pragmatic implementation strategy, Delegated responsibility, Experiences of control and Successful implementation.

CONCLUSIONS: Successful implementation was achieved when initial skepticism among staff was changed into acceptance and using EDT-C had become routine in their daily work. Inter-professional education including material from authentic patient cases promotes knowledge about different professions and can strengthen teamwork. EDT-C with evidenced-based material adapted to the context can give healthcare professionals a structured and objective tool with which to assess and treat patients, giving them a sense of control and assurance.

Nationell ämneskategori
Pediatrik Hälso- och sjukvårdsorganisation, hälsopolitik och hälsoekonomi
Identifikatorer
urn:nbn:se:uu:diva-371099 (URN)10.1371/journal.pone.0207744 (DOI)000451325700062 ()30475857 (PubMedID)
Tillgänglig från: 2018-12-19 Skapad: 2018-12-19 Senast uppdaterad: 2019-01-08Bibliografiskt granskad
Almblad, A.-C., Siltberg, P., Engvall, G. & Målqvist, M. (2018). Implementation of Pediatric Early Warning Score: Adherence to Guidelines and Influence of Context. Journal of Pediatric Nursing: Nursing Care of Children and Families, 38, 33-39
Öppna denna publikation i ny flik eller fönster >>Implementation of Pediatric Early Warning Score: Adherence to Guidelines and Influence of Context
2018 (Engelska)Ingår i: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 38, s. 33-39Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

PURPOSE: To describe data of Pediatric Early Warning Score (PEWS) registrations and to evaluate the implementation of PEWS by examining adherence to clinical guidelines based on measured PEWS, and to relate findings to work context.

DESIGN AND METHODS: PEWS, as a part of a concept called Early Detection and Treatment-Children (EDT-C) was implemented at three wards at a Children's Hospital in Sweden. Data were collected from the Electronic Patient Record (EPR) retrospectively to assess adherence to guidelines. The Alberta Context Tool (ACT) was used to assess work context among healthcare professionals (n=110) before implementation of EDT-C.

RESULTS: The majority of PEWS registrations in EPR were low whereas 10% were moderate to high. Adherences to ward-specific guidelines at admission and for saturation in respiratory distress were high whereas adherence to pain assessment was low. There were significant differences in documented recommended actions between wards. Some differences in leadership and evaluation between wards were identified.

CONCLUSIONS: Evaluation of PEWS implementation indicated frequent use of the tool despite most scores being low. High scores (5-9) occurred 28 times, which may indicate that patients with a high risk of clinical deterioration were identified. Documentation of the consequent recommended actions was however incomplete and there was a large variation in adherence to guidelines. Contextual factors may have an impact on adherence.

PRACTICE IMPLICATIONS: EDT-C can lead to increased knowledge about early detection of deterioration, strengthen nurses as professionals, optimize treatment and teamwork and thereby increase patient safety for children treated in hospitals.

Nyckelord
Deterioration, Implementation, PARIHS, Pediatric, Pews
Nationell ämneskategori
Pediatrik
Forskningsämne
Pediatrik
Identifikatorer
urn:nbn:se:uu:diva-336550 (URN)10.1016/j.pedn.2017.09.002 (DOI)000423035000019 ()29167078 (PubMedID)
Anmärkning

Supplementary data to this article can be found online at https://doi. org/10.1016/j.pedn.2017.09.002

Tillgänglig från: 2017-12-14 Skapad: 2017-12-14 Senast uppdaterad: 2018-02-28Bibliografiskt granskad
Ångström-Brännström, C., Lindh, V., Mullaney, T., Nilsson, K., Wickart-Johansson, G., Svärd, A.-M., . . . Engvall, G. (2018). Parents' Experiences and Responses to an Intervention for Psychological Preparation of Children and Families During the Child's Radiotherapy.. Journal of Pediatric Oncology Nursing, 35(2), 132-148
Öppna denna publikation i ny flik eller fönster >>Parents' Experiences and Responses to an Intervention for Psychological Preparation of Children and Families During the Child's Radiotherapy.
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2018 (Engelska)Ingår i: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 35, nr 2, s. 132-148Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

The aim of this study was to evaluate parents' experiences and responses to a systematic intervention for psychological preparation of children and families during the child's radiotherapy (RT) treatment. In this case-control study at 3 pediatric RT centers, an intervention with a preparatory kit, including age-adjusted information on tablets, gift of a stuffed toy or a pair of headphones, a parent booklet, and toy models of the computed tomography and RT machines was implemented. For evaluation, a mixed methods data collection was conducted. A total of 113 parents of children undergoing RT were included-n = 59 in the baseline group and n = 54 in the intervention group. Health-related quality of life was rated low, but parents in the intervention group expressed less anxiety after the RT compared with the baseline group. They found information suitable for their young children, siblings, and friends were involved and the toy models were used for play. Parents expressed positive feelings due to close interaction with staff and each other within the family. The solutions developed within a human-centered design approach and shaped as a systematic family-centered strategy contributed to parents understanding and coping with the child's RT.

Nyckelord
child, childhood cancer, intervention, parent, radiotherapy
Nationell ämneskategori
Omvårdnad
Identifikatorer
urn:nbn:se:uu:diva-343399 (URN)10.1177/1043454217741876 (DOI)000427356900006 ()29172925 (PubMedID)
Forskningsfinansiär
Barncancerfonden
Tillgänglig från: 2018-02-27 Skapad: 2018-02-27 Senast uppdaterad: 2018-05-28Bibliografiskt granskad
Kassa, A.-M., Engvall, G. & Engstrand Lilja, H. (2017). Young children with severe congenital malformations (VACTERL) expressed mixed feelings about their condition and worries about needles and anaesthesia. Acta Paediatrica, 106(10), 1694-1701
Öppna denna publikation i ny flik eller fönster >>Young children with severe congenital malformations (VACTERL) expressed mixed feelings about their condition and worries about needles and anaesthesia
2017 (Engelska)Ingår i: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 106, nr 10, s. 1694-1701Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

Aim: Our knowledge of the perceptions that children with severe congenital malformations have of their health, treatment and how to improve hospital care is limited. This study focused on patients with vertebral defects, anal atresia, cardiac defects, tracheo-oesophageal fistula, renal anomalies and limb abnormalities (VACTERL).

Methods: We interviewed 10 children aged five to eight years with VACTERL association who were treated in a Swedish tertiary paediatric surgical centre, using a computer-assisted technique called In My Shoes. The interviews were analysed by qualitative content analysis.

Results: The children described their awareness of their health history and said they felt proud but different due to their physical dysfunction. They were happy to visit the hospital to meet familiar staff, but expressed negative feelings about missing normal life. They were afraid of needle-related procedures and not wakening up after anaesthesia. Various ways of coping with difficult situations were expressed, and suggestions to improve hospital care were voiced.

Conclusion: Careful follow-up of these children by multidisciplinary teams is crucial to optimise their health and functional status. Fear of medical procedures may be reduced by carefully delivered information, listening to the children, providing continuity of care and creating individual care strategies.

Ort, förlag, år, upplaga, sidor
WILEY, 2017
Nyckelord
Care strategies, Computer-assisted interview Fear of anaesthesia, Needle-related procedures, Severe congenital malformations
Nationell ämneskategori
Medicin och hälsovetenskap
Identifikatorer
urn:nbn:se:uu:diva-334743 (URN)10.1111/apa.13973 (DOI)000409348400024 ()28672091 (PubMedID)
Tillgänglig från: 2017-11-29 Skapad: 2017-11-29 Senast uppdaterad: 2019-08-21Bibliografiskt granskad
Lindh, V., Engvall, G., Ångström-Brannström, C., Nilsson, K., Wickart-Johansson, G. & Lindh, J. (2016). Children's Voices On Experiencing Radiotherapy. Oncology Nursing Forum, 43(2), 134-134
Öppna denna publikation i ny flik eller fönster >>Children's Voices On Experiencing Radiotherapy
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2016 (Engelska)Ingår i: Oncology Nursing Forum, ISSN 0190-535X, E-ISSN 1538-0688, Vol. 43, nr 2, s. 134-134Artikel i tidskrift, Meeting abstract (Övrigt vetenskapligt) Published
Nationell ämneskategori
Omvårdnad Cancer och onkologi Pediatrik
Identifikatorer
urn:nbn:se:uu:diva-299121 (URN)000373613900380 ()
Tillgänglig från: 2016-07-15 Skapad: 2016-07-14 Senast uppdaterad: 2017-11-28Bibliografiskt granskad
Ander, M., Grönqvist, H., Cernvall, M., Engvall, G., Hedström, M., Ljungman, G., . . . von Essen, L. (2016). Development of health-related quality of life and symptoms of anxiety and depression among persons diagnosed with cancer during adolescence: a 10-year follow-up study. Psycho-Oncology, 25(5), 582-589
Öppna denna publikation i ny flik eller fönster >>Development of health-related quality of life and symptoms of anxiety and depression among persons diagnosed with cancer during adolescence: a 10-year follow-up study
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2016 (Engelska)Ingår i: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 25, nr 5, s. 582-589Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

Objective: The main aim was to investigate the development of health-related quality of life (HRQOL) and symptoms of anxiety and depression in a cohort diagnosed with cancer during adolescence from shortly after up to 10 years after diagnosis.

Methods: Participants (n = 61) completed the SF-36 and the HADS shortly; six, 12, and 18 months; and two, three, four, and 10 years (n = 28) after diagnosis. Polynomial change trajectories were used to model development.

Results: Polynomial change trajectories showed an initial increase which abated over time into a decrease which abated over time for the SF-36 subscales Mental Health and Vitality; an initial decline which abated over time into an increase for HADS anxiety; and an initial decline which abated over time into an increase which abated over time for HADS depression. The SF-36 mental component summary showed no change from two to 10 years after diagnosis whereas the SF-36 physical component summary showed an increase from two years after diagnosis which declined over time. Ten years after diagnosis 29% reported possible anxiety.

Conclusions: Development of HRQOL and symptoms of anxiety and depression appears to be nonlinear among persons diagnosed with cancer during adolescence. Well into permanent survivorship an increase in symptoms of anxiety is shown and approximately a third of the participants report possible anxiety. The findings indicate the need for: studies designed to pinpoint the times of highest psychological risk, clinical follow-up focusing on psychological problems, and development of effective psychological interventions for survivors of adolescent cancer

Nationell ämneskategori
Cancer och onkologi Psykologi (exklusive tillämpad psykologi)
Identifikatorer
urn:nbn:se:uu:diva-262514 (URN)10.1002/pon.3965 (DOI)000374494700014 ()26361085 (PubMedID)
Externt samarbete:
Forskningsfinansiär
Cancerfonden, 99 0347 01 0235 02 0690 03 0227 05 0189 10 0649 11 0649 12 0649Barncancerfonden, 1999/021 02/002 04/011 07/044 10/086
Tillgänglig från: 2015-09-16 Skapad: 2015-09-16 Senast uppdaterad: 2017-12-04Bibliografiskt granskad
Ångström-Brännström, C., Engvall, G., Mullaney, T., Nilsson, K., Wickart-Johansson, G., Svärd, A. M., . . . Lindh, V. (2016). Facilitating Radiotherapy for Children: Technique, Design and Professional Care in Synergy, a Multicenter Intervention Study. Pediatric Blood & Cancer, 63, S213-S213
Öppna denna publikation i ny flik eller fönster >>Facilitating Radiotherapy for Children: Technique, Design and Professional Care in Synergy, a Multicenter Intervention Study
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2016 (Engelska)Ingår i: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 63, s. S213-S213Artikel i tidskrift, Meeting abstract (Refereegranskat) Published
Nationell ämneskategori
Cancer och onkologi Hematologi Pediatrik
Identifikatorer
urn:nbn:se:uu:diva-313855 (URN)000384818801290 ()
Tillgänglig från: 2017-01-26 Skapad: 2017-01-25 Senast uppdaterad: 2017-11-29Bibliografiskt granskad
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