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Burström, Å., Acuna Mora, M., Öjmyr-Joelsson, M., Sparud-Lundin, C., Rydberg, A., Hanseus, K., . . . Bratt, E.-L. (2019). Parental Uncertainty About Transferring Their Adolescent with Congenital Heart Disease to Adult Care. Journal of Advanced Nursing, 5(2), 380-387
Open this publication in new window or tab >>Parental Uncertainty About Transferring Their Adolescent with Congenital Heart Disease to Adult Care
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2019 (English)In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 5, no 2, p. 380-387Article in journal (Refereed) Published
Abstract [en]

AIMS: To study parent's levels of uncertainty related to the transfer from pediatric to adult care in adolescents with Congenital Heart Disease (CHD) and to identify potentially correlating factors.

BACKGROUND: Parents acknowledge that during transition they struggle with finding ways of feeling secure in handing over the responsibility and letting go of control. Well-prepared and informed parents who feel secure are most likely better skilled to support their adolescent and to hand over the responsibility.

DESIGN: A cross-sectional study.

METHODS: Overall, 351 parents were included (35% response rate). Parental uncertainty was assessed using a Linear Analogue Scale (0-100). Data was collected between January - August 2016. Potential correlates were assessed using the readiness for transition questionnaire and sociodemographic data.

RESULTS: The mean parental uncertainty score was 42.5. Twenty-four percent of the parents had a very low level of uncertainty (score 0-10) and 7% had a very high level (score 91-100). Overall, 26% of the mothers and 36% of the fathers indicated that they had not started thinking of the transfer yet. The level of uncertainty was negatively associated with the level of perceived overall readiness. Adolescents' age, sex, CHD complexity and parental age were not related to uncertainty.

CONCLUSION: A wide range in the levels of uncertainty was found. Parents who were less involved in the care, or perceived their adolescent as readier for the transition, felt less uncertain. Still, thirty percent of the parents had not started to think about the transfer to adult care. This article is protected by copyright. All rights reserved.

Keywords
adolescents, congenital heart disease, nursing, parental uncertainty, readiness for transition, transfer, transition
National Category
Nursing
Identifiers
urn:nbn:se:rkh:diva-2715 (URN)10.1111/jan.13852 (DOI)30209810 (PubMedID)
Available from: 2018-10-09 Created: 2018-10-09 Last updated: 2019-03-26Bibliographically approved
Wigander, H., Nisell, M., Frenckner, B., Wester, T., Brodin, U. & Öjmyr-Joelsson, M. (2019). Quality of life and functional outcome in Swedish children with low anorectal malformations: a follow-up study.. Pediatric surgery international (Print), 35(5), 583-590
Open this publication in new window or tab >>Quality of life and functional outcome in Swedish children with low anorectal malformations: a follow-up study.
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2019 (English)In: Pediatric surgery international (Print), ISSN 0179-0358, E-ISSN 1437-9813, Vol. 35, no 5, p. 583-590Article in journal (Refereed) Published
Abstract [en]

PURPOSE: The aim was to investigate the quality of life and bowel function in children with low anorectal malformations (ARM).

ADDITIONAL AIM: To evaluate the Swedish version the Hirschsprung's Disease/Anorectal Malformation Quality of life Questionnaire (HAQL).

METHODS: Forty-four children and their parents were invited to complete the HAQL and the Bowel Function Score (BFS). Healthy children participated as controls and completed the HAQL.

RESULTS: Seventeen children and 18 mothers completed the HAQL. The children reported impaired function in the physical symptom (PH) fecal continence (FC) and laxative diet (LD) domains compared to controls. Compared with their mothers, they reported impaired physical function and more symptoms in the emotional functioning (EMF) and PH domains. 27 families completed the BFS; 63% reported normal bowel function, 33% moderate outcome and one patient, comprising 4%, poor outcome. Evaluation of the HAQL, FC, EMF and PH domains showed no obvious conflicts.

CONCLUSIONS: The children did not differ much regarding their QoL, even though they appeared to have impaired bowel function and worse emotional functioning compared to controls. The mothers underestimated their children's physical symptoms and overestimated their emotional functioning. Evaluated domains in the HAQL appear to work as intended, but the questionnaire needs further development.

Keywords
ARM, BFS, HAQL, Low anorectal malformations, QoL, Quality of life
National Category
Pediatrics
Identifiers
urn:nbn:se:rkh:diva-2749 (URN)10.1007/s00383-018-04431-8 (DOI)30729983 (PubMedID)
Available from: 2019-02-25 Created: 2019-02-25 Last updated: 2019-06-24Bibliographically approved
Burström, Å., Acuña Mora, M., Öjmyr-Joelsson, M., Sparud-Lundin, C., Rydberg, A., Hanseus, K., . . . Bratt, E.-L. (2019). Ready for Transfer to Adult Care? A Triadic Evaluation of Transition Readiness in Adolescents With Congenital Heart Disease and Their Parents. Journal of Family Nursing
Open this publication in new window or tab >>Ready for Transfer to Adult Care? A Triadic Evaluation of Transition Readiness in Adolescents With Congenital Heart Disease and Their Parents
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2019 (English)In: Journal of Family Nursing, ISSN 1074-8407, E-ISSN 1552-549XArticle in journal (Refereed) Epub ahead of print
Abstract [en]

Transfer to adult care for adolescents with chronic conditions ought to be determined by transition readiness. The aims of this study were (a) to describe the level of readiness for transition in adolescents with congenital heart disease, (b) to compare adolescents' assessment of transition readiness with their parents' assessments, and (c) to study potential correlates of transition readiness. A total of 157 triads of adolescents aged 14 to 18 years and their parents completed the Readiness for Transition Questionnaire. Adolescents scored higher on overall readiness than their parents. Multivariable analyses revealed that higher levels of adolescents' overall readiness were associated with a less threatening view of the illness, a higher level of empowerment, and with higher mothers' and fathers' overall readiness scores. Adolescents' responsibility scores were positively associated with age and parental adolescent responsibility scores. Parental involvement scores were negatively associated with adolescents' age and positively with the mothers' parental involvement scores. By using a triadic evaluation, the results of the present study significantly extend what is currently known about this population.

Place, publisher, year, edition, pages
Sage Publications, 2019
Keywords
adolescents, congenital heart disease, parents, readiness for transition
National Category
Nursing
Identifiers
urn:nbn:se:rkh:diva-3004 (URN)10.1177/1074840719864255 (DOI)31342815 (PubMedID)
Funder
Swedish Heart Lung Foundation, 20150535Forte, Swedish Research Council for Health, Working Life and Welfare, 2015-00594
Available from: 2019-08-06 Created: 2019-08-06 Last updated: 2019-08-06Bibliographically approved
Kraft, M. & Nisell, M. (2018). Addressing a global nursing perspective in an undergraduate nursing program: Student learning in clinical education. Journal of Nursing Education and Practice, 8(9), 45-54
Open this publication in new window or tab >>Addressing a global nursing perspective in an undergraduate nursing program: Student learning in clinical education
2018 (English)In: Journal of Nursing Education and Practice, ISSN 1925-4040, E-ISSN 1925-4059, Vol. 8, no 9, p. 45-54Article in journal (Refereed) Published
Abstract [en]

Objective: Although many educational student activities addressing global awareness are highlighted in the literature, the global nursing approach and how it is applied by students in clinical education is not widely described. After the implementation of a new global nursing curriculum, nursing students educated at The Swedish Red Cross University College are now engaged in counteracting inequalities in health. This paper aims to describe how nursing students apply the global nursing perspective during their clinical education.

Methods: The study is based on students’ written individual reflective reports. The procedure for data analysis was inspired by a thematic and interpretive data synthesis. The four stages in Kolb’s learning cycle was used as a framework.

Results: Four themes were identified: 1) Experiencing frailty, suffering and vulnerability; 2) Advocating quality of life and priorities in health; 3) Conceptualizing autonomy, involvement and participation; 4) Making a difference and acting with respect and an open mind.

Conclusions: Consequently, students at the The Swedish Red Cross University College are confident in applying global nursing perspective in care actions. Nursing educators have a mutual responsibility to facilitate students’ knowledge transfers in global competencies and strategies to reduce the impact on the environment and on humans.

Keywords
Clinical education, Global nursing, Student learning, Undergraduate nursing program
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:rkh:diva-2576 (URN)10.5430/jnep.v8n9p45 (DOI)
Available from: 2018-04-20 Created: 2018-04-20 Last updated: 2018-04-23Bibliographically approved
Öst, E., Nisell, M., Burgos, C. M., Frenckner, B. & Öjmyr-Joelsson, M. (2018). Behavioral, emotional and social functioning in children born with congenital diaphragmatic hernia. Pediatric surgery international (Print), 34(6), 653-661
Open this publication in new window or tab >>Behavioral, emotional and social functioning in children born with congenital diaphragmatic hernia
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2018 (English)In: Pediatric surgery international (Print), ISSN 0179-0358, E-ISSN 1437-9813, Vol. 34, no 6, p. 653-661Article in journal (Refereed) Published
Abstract [en]

PURPOSE: The aim was to investigate social competence and behavioral and emotional problems in children and adolescents born with CDH.

METHODS: All children born with CDH, treated in Stockholm 1990-2009, were invited to participate. After written consent, the Child Behavior Checklist or Adult Self-Report questionnaires were sent to participants. Of the 145 long-term survivors, 51% returned a completed questionnaire. Both the syndrome and competence scales were used and open-ended questions were analyzed with manifest content analysis.

RESULTS: All parents of children aged 1.5-5 years and 90% of parents of children aged 6-18 years reported a normal range on the syndrome scale. Five parents indicated internalizing, but none externalizing behavior. All young adults achieved a normal score on the syndrome scale. Eighty-five percent had normal school achievement, 79% had normal social scores and 40% had normal activity levels. Significantly fewer boys (23%) were in the normal activity range compared with 67% of girls.

CONCLUSIONS: The vast majority of all parents of children born with CDH scored no behavioral or emotional problems, furthermore, they reported normal social and school competence. However, the activity levels seemed to be reduced in children born with CDH.

Keywords
Child behavior check-list, Congenital diaphragmatic hernia, Extracorporeal membrane oxygenation, Long-term follow-up, Psychosocial function
National Category
Nursing
Identifiers
urn:nbn:se:rkh:diva-2568 (URN)10.1007/s00383-018-4266-9 (DOI)29637256 (PubMedID)
Available from: 2018-04-12 Created: 2018-04-12 Last updated: 2018-10-09Bibliographically approved
Öst, E., Frenckner, B., Nisell, M., Burgos, C. M. & Öjmyr-Joelsson, M. (2018). Health-related quality of life in children born with congenital diaphragmatic hernia. Pediatric surgery international (Print), 34(4), 05-414
Open this publication in new window or tab >>Health-related quality of life in children born with congenital diaphragmatic hernia
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2018 (English)In: Pediatric surgery international (Print), ISSN 0179-0358, E-ISSN 1437-9813, Vol. 34, no 4, p. 05-414Article in journal (Refereed) Published
Abstract [en]

PURPOSE: The aim of this study was to examine health-related quality of life (HRQoL) in children born with congenital diaphragmatic hernia (CDH).

METHODS: Between 1993 and 2003, a total of 102 children born with CDH were treated at Astrid Lindgren Children's hospital in Stockholm. In 2012, long-term survivors (n = 77) were asked to participate in the present study, which resulted in a 46% (n = 35) response rate. The KIDSCREEN-52 questionnaire was used for measuring HRQoL and a detailed review of medical records was performed.

RESULTS: The study participants did not differ from the non-participants in terms of prenatal diagnosis, gender, side of lesion, method of surgical repair, time to intubation, need for ECMO support, or way of discharge from the hospital. Children born with CDH considered themselves to have a good HRQoL, as good as healthy Swedish children. There were only a few significant HRQoL differences within the group of children with CDH, although several median scores in ECMO-treated patients were somewhat lower. Correlations between child and parent scores on HRQoL were low.

CONCLUSIONS: Health-related quality of life in children born with CDH is good overall, however, a correlation between the severity of the malformation and HRQoL cannot be excluded.

Keywords
Congenital diaphragmatic hernia, Extracorporeal membrane oxygenation., Health-related quality of life, Long-term follow-up
National Category
Nursing
Identifiers
urn:nbn:se:rkh:diva-2559 (URN)10.1007/s00383-018-4237-1 (DOI)29453581 (PubMedID)
Note

This study was supported by Grants from the Frimurare Barnhuset Foundation, The Clas Groschinsky Memorial Fund, and HRH Crown Princess Lovisa’s Foundation.

Available from: 2018-02-22 Created: 2018-02-22 Last updated: 2018-08-30Bibliographically approved
Wigander, H., Öjmyr-Joelsson, M., Frenckner, B., Wester, T. & Nisell, M. (2018). Impact of Low Anorectal Malformation on Parenting Stress: A Mixed-Method Study. Journal of Pediatric Nursing: Nursing Care of Children and Families, 42, e45-e51
Open this publication in new window or tab >>Impact of Low Anorectal Malformation on Parenting Stress: A Mixed-Method Study
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2018 (English)In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 42, p. e45-e51Article in journal (Refereed) Published
Abstract [en]

The purpose of this study was to investigate parenting stress among parents of children with low ARM.

STUDY AIMS: 1) Compare parenting stress among parents of children with low ARM, with parents of healthy children using questionnaires. 2) Identify subscales within the questionnaire which needed to be further explored. 3) Use semi-structured interviews with parents of children with low ARM, to explore parenting stress and to explain, expand and or support the quantitative findings.

DESIGN AND METHODS: An explanatory sequential mixed methods design was used in this follow up study. The parents completed the Swedish Parenthood Stress Questionnaire (SPSQ), semi-structured interviews were conducted.

RESULTS: Fifteen mothers and 13 fathers of children with low ARM age 8-18, returned completed questionnaires. A control group of 17 mothers and 6 fathers of healthy children age 8-18 that had visited the hospital for a minor procedure was recruited for comparison purposes. There were no significant differences found between index group and controls except in the subscale Incompetence, where parents of children with low ARM reported lower levels of stress compared to controls. Nine semi-structured interviews were conducted with parents of children with low ARM. Qualitative content analysis was used and revealed three themes - Communication between parents, Expectations of parenthood, and Challenges concerning parenthood.

CONCLUSIONS: Parents of children with low ARM did not report high levels of stress. When interviewed, they told about earlier experiences of emotional stress, feelings of guilt, and chaos at the time the child was born and during infancy.

Keywords
Communication, Low anorectal malformations, Mixed-methods study, Parenting stress
National Category
Nursing
Identifiers
urn:nbn:se:rkh:diva-2580 (URN)10.1016/j.pedn.2018.05.003 (DOI)29778302 (PubMedID)
Available from: 2018-05-24 Created: 2018-05-24 Last updated: 2018-10-09Bibliographically approved
Burström, Å., Bratt, E.-L., Frenckner, B., Nisell, M., Hanséus, K., Rydberg, A. & Öjmyr-Joelsson, M. (2017). Adolescents with congenital heart disease: their opinions about the preparation for transfer to adult care.. European Journal of Pediatrics, 176(7), 881-889
Open this publication in new window or tab >>Adolescents with congenital heart disease: their opinions about the preparation for transfer to adult care.
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2017 (English)In: European Journal of Pediatrics, ISSN 0340-6199, E-ISSN 1432-1076, Vol. 176, no 7, p. 881-889Article in journal (Refereed) Published
Abstract [en]

The aim of the study was to explore what adolescents with congenital heart disease (CHD) view as important in the preparation for the transfer to adult care. We performed interviews in four focus groups with adolescents (14-18 years old) at four university hospitals in Sweden. Data was analysed using qualitative content analysis. The analysis revealed one main category; Becoming a manager of the condition and four subcategories; Sufficient knowledge about the health, Be a participant in the care, Parental support, and Communicate with others about the health. The adolescents' ages differentiated the discussion in the groups. The older adolescents seemed to have more interest in transition planning, information and transfer. The younger described more frustrations about communication and handling the disease.

CONCLUSION: To become a manager of the CHD in daily life, the adolescents want disease specific knowledge, which should be communicated in a developmentally appropriate way. Adolescents want to participate and be involved in the transition process. They need support and guidance in how to communicate their CHD. Parental support is fundamental but it change over time. Moreover, peer-support is becoming more significant during the transition process.

What is Known:

• Transition during adolescence and transfer to adult care for adolescents with CHD is complex, and there is a shift in roles.

• Adolescents often have poor knowledge and understanding about their heart condition and the consequences.

What is New:

• Adolescents call for disease specific information regarding health issues of importance for them in daily life.

• Communicating the disease with other is a challenge- peer support from other adolescents with CHD could be a facilitator.

Keywords
Adolescents, Congenital heart disease, Focus group interviews, Transition
National Category
Nursing
Identifiers
urn:nbn:se:rkh:diva-2411 (URN)10.1007/s00431-017-2917-9 (DOI)28508990 (PubMedID)
Available from: 2017-05-24 Created: 2017-05-24 Last updated: 2018-04-12Bibliographically approved
Öst, E., Nisell, M., Frenckner, B., Mesas Burgos, C. & Öjmyr-Joelsson, M. (2017). Parenting stress among parents of children with congenital diaphragmatic hernia. Pediatric surgery international (Print), 33(7), 761-769
Open this publication in new window or tab >>Parenting stress among parents of children with congenital diaphragmatic hernia
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2017 (English)In: Pediatric surgery international (Print), ISSN 0179-0358, E-ISSN 1437-9813, Vol. 33, no 7, p. 761-769Article in journal (Refereed) Published
Abstract [en]

PURPOSE: The aim of this study was to examine parental stress among parents of children with congenital diaphragmatic hernia (CDH).

METHODS: Between 2005 and 2009, a total of 51 children with CDH were treated at Astrid Lindgren Children's Hospital. The survival rate at discharge was 86% and long-term survival rate 80%. One parent each of the long-term survivors (41 children) was included in the present study, and 34 parents (83%) agreed to participate. Participants received the Swedish Parenthood Stress Questionnaire (SPSQ). The questionnaire was supplemented by data from case records.

RESULTS: Parents of children with CDH, who had been supported by ECMO or had a long hospital stay, showed significantly higher overall parental stress. Mothers scored an overall higher parental stress compared with fathers. A prenatal diagnosis of CDH or lower parental educational level resulted in significantly higher parental stress in some of the factors.

CONCLUSIONS: Parental stress in parents of children with CDH seems to increase with the severity of the child's malformation. Mothers tend to score higher parental stress than fathers.

Keywords
Congenital diaphragmatic hernia, Extracorporeal membrane oxygenation, Long-term follow-up, Parental stress, Prenatal diagnosis
National Category
Nursing
Identifiers
urn:nbn:se:rkh:diva-2412 (URN)10.1007/s00383-017-4093-4 (DOI)28527042 (PubMedID)
Available from: 2017-05-29 Created: 2017-05-29 Last updated: 2017-07-14Bibliographically approved
Burström, Å., Öjmyr-Joelsson, M., Bratt, E.-L., Lundell, B. & Nisell, M. (2016). Adolescents With Congenital Heart Disease and Their Parents: Needs Before Transfer to Adult Care.. Journal of Cardiovascular Nursing, 31(5), 399-404
Open this publication in new window or tab >>Adolescents With Congenital Heart Disease and Their Parents: Needs Before Transfer to Adult Care.
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2016 (English)In: Journal of Cardiovascular Nursing, ISSN 0889-4655, E-ISSN 1550-5049, Vol. 31, no 5, p. 399-404Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Patients with congenital heart disease (CHD) are in need of lifelong healthcare. For adolescents with CHD, this transfer to adult-care clinic can be difficult.

OBJECTIVE: The aim was to identify and describe the needs of adolescents with CHD and their parents during the transition before transfer to adult cardiologic healthcare.

METHODS: This study has an exploratory design with a qualitative approach, where 13 adolescents with CHD and their parents (n = 12) were individually interviewed. The interviews were analyzed with content analysis.

RESULTS: The analysis of the adolescents' interviews resulted in 3 categories: change of relationships, knowledge and information, and daily living. The theme that emerged depicting the meaning of the categories found was Safety and control, indicating needs of continuity, knowledge, and taking responsibility. Analysis of the parents' answers gave 2 categories: change of relationship and daily living. The theme that emerged was safety and trust, indicating needs of continuity and shifting responsibility.

CONCLUSIONS: The transition must be carefully planned to ensure that adolescents can master new skills to manage the transfer to adult cardiologic healthcare. A structured program may facilitate and fulfill the needs of the adolescents and their parents, taking into consideration the aspects of trust, safety, and control. However, the content and performance of such a program must also be examined. We plan to undertake an extensive research project in the area, and this study will be a baseline for further research.

Keywords
adolescents, CHD, parents, transfer, transition
National Category
Nursing
Identifiers
urn:nbn:se:rkh:diva-1890 (URN)10.1097/JCN.0000000000000288 (DOI)26296247 (PubMedID)
Available from: 2015-08-25 Created: 2015-08-25 Last updated: 2017-12-04Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0002-0221-8631

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