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  • 1.
    Burström, Åsa
    et al.
    Karolinska Institutet / Astrid Lindgren Children's Hospital.
    Acuna Mora, Mariela
    University of Gothenburg / KU Leuven, Department of Public Health and Primary Care, Leuven, Belgium.
    Öjmyr-Joelsson, Maria
    Karolinska Institutet / Astrid Lindgren Children's Hospital.
    Sparud-Lundin, Carina
    University of Gothenburg.
    Rydberg, Annika
    Umeå University.
    Hanseus, Katarina
    Skåne University Hospital.
    Frenckner, Björn
    Karolinska Institutet / Astrid Lindgren Children's Hospital.
    Nisell, Margret
    Röda Korsets Högskola, Hälsovetenskapliga institutionen. Karolinska Institutet.
    Moons, Philip
    University of Gothenburg / KU Leuven, Department of Public Health and Primary Care, Leuven, Belgium.
    Bratt, Ewa-Lena
    University of Gothenburg / The Queen Silvia Children's Hospital.
    Parental Uncertainty About Transferring Their Adolescent with Congenital Heart Disease to Adult Care2019Ingår i: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 5, nr 2, s. 380-387Artikel i tidskrift (Refereegranskat)
    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.

  • 2.
    Burström, Åsa
    et al.
    Karolinska Institutet / Astrid Lindgren Children’s Hospital.
    Acuña Mora, Mariela
    University of Gothenburg.
    Öjmyr-Joelsson, Maria
    Karolinska Institutet / Astrid Lindgren Children’s Hospital.
    Sparud-Lundin, Carina
    University of Gothenburg.
    Rydberg, Annika
    Umeå University.
    Hanseus, Katarina
    Skåne University Hospital.
    Frenckner, Björn
    Karolinska Institutet / Astrid Lindgren Children’s Hospital.
    Nisell, Margret
    Röda Korsets Högskola, Hälsovetenskapliga institutionen. Karolinska Institutet.
    Moons, Philip
    University of Gothenburg / KU Leuven, Belgium.
    Bratt, Ewa-Lena
    Universisty of Gothenburg / The Queen Silvia Children’s Hospital.
    Ready for Transfer to Adult Care? A Triadic Evaluation of Transition Readiness in Adolescents With Congenital Heart Disease and Their Parents2019Ingår i: Journal of Family Nursing, ISSN 1074-8407, E-ISSN 1552-549XArtikel i tidskrift (Refereegranskat)
    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.

  • 3.
    Burström, Åsa
    et al.
    Karolinska Institutet / Astrid Lindgren Children’s Hospital.
    Bratt, Ewa-Lena
    University of Gothenburg / The Queen Silvia Children’s Hospital.
    Frenckner, Björn
    Karolinska Institutet / Astrid Lindgren Children’s Hospital.
    Nisell, Margret
    Röda Korsets Högskola, Avdelningen Teknik och Välfärd. Karolinska Intitutet.
    Hanséus, Katarina
    Skåne University Hospital.
    Rydberg, Annika
    Umeå University.
    Öjmyr-Joelsson, Maria
    Karolinska Institutet / Astrid Lindgren Children’s Hospital.
    Adolescents with congenital heart disease: their opinions about the preparation for transfer to adult care.2017Ingår i: European Journal of Pediatrics, ISSN 0340-6199, E-ISSN 1432-1076, Vol. 176, nr 7, s. 881-889Artikel i tidskrift (Refereegranskat)
    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.

  • 4.
    Burström, Åsa
    et al.
    Department for Women and Children's Health, Karolinska Institutet, Pediatric Cardiology Unit, Astrid Lindgren Children's Hospital, Stockholm.
    Öjmyr-Joelsson, Maria
    Department for Women Children's Health, Karolinska Institutet, Pediatric Surgery Unit, Astrid Lindgren Children's Hospital, Stockholm.
    Bratt, Ewa-Lena
    Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Department of Pediatric Cardiology, The Queen Silvia Children's Hospital, Gothenburg.
    Lundell, Bo
    Department for Women and Children's Health, Karolinska Institutet, Pediatric Cardiology Unit, Astrid Lindgren Children's Hospital, Stockholm.
    Nisell, Margret
    Röda Korsets Högskola, Avdelningen Teknik och Välfärd. Department for Women and Children's Health, Karolinska Institutet.
    Adolescents With Congenital Heart Disease and Their Parents: Needs Before Transfer to Adult Care.2016Ingår i: Journal of Cardiovascular Nursing, ISSN 0889-4655, E-ISSN 1550-5049, Vol. 31, nr 5, s. 399-404Artikel i tidskrift (Refereegranskat)
    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.

  • 5.
    Kraft, Mia
    et al.
    Röda Korsets Högskola, Hälsovetenskapliga institutionen.
    Nisell, Margret
    Röda Korsets Högskola, Hälsovetenskapliga institutionen.
    Addressing a global nursing perspective in an undergraduate nursing program: Student learning in clinical education2018Ingår i: Journal of Nursing Education and Practice, ISSN 1925-4040, E-ISSN 1925-4059, Vol. 8, nr 9, s. 45-54Artikel i tidskrift (Refereegranskat)
    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.

  • 6.
    Nisell, Margret
    Department of Woman and Child Health Child and Adolescent Psychiatric Unit, Karolinska Institutet.
    Psychosocial aspects on children with imperforate anus and their parents2009Doktorsavhandling, sammanläggning (Övrigt vetenskapligt)
    Abstract [en]

    Aim: The overall aim of this thesis was to explore psychosocial consequences on children with high and intermediate imperforate anus and their parents.

    Material/Methods: Paper I was an explorative study involving interviews. The purpose was to illuminate the children s and parents experiences of imperforate anus (IA) and to create a baseline for further research. In Papers II-V, study-specific questionnaires were used to collect data from 25 children (8-13 years old) with high and intermediate imperforate anus and from their parents. The questionnaires comprised 45 items for the children and 59 items for the parents, covering psychosocial issues, items on child bowel function, and on experiences of hospital care. The parents also filled in the Child Behavior Checklist (CBCL), and the children s teachers filled in the Teacher s Report Form (TRF). Thirty children with juvenile chronic arthritis and 32 children with no chronic condition, along with their parents, served as Comparison Groups. In Paper VI, the psychometric properties of the child self-reported psychosocial items were evaluated with Rasch analysis.

    Results: Four categories of effects of the malformation were disclosed in the interviews: physical, emotional, social, and family effects. The emotional effects permeated the interviews; the parents suffering was evident. In the questionnaires the children with imperforate anus reported being generally happy, they liked school, and had good relationships with peers. According to their parents, the children had fecal incontinence and constipation. In the CBCL, the children with imperforate anus were assessed to have more emotional/behavioral problems than the children with juvenile chronic arthritis. On the CBCL competence scales no differences were found between groups. In the TRF, the teachers reported few emotional/behavioral problems for the children with imperforate anus, though they assessed them to be less adapted in school than were the children with no chronic condition. Differences were found in answers on the psychological items, between the children and their mothers, on the pair level. The mothers of children with imperforate anus rated lower on their child s expression of will and on respecting their child s will, than did the other mothers. Fathers scored school items optimistically. Several parents of children with imperforate anus reported positive experiences in relation to their child s condition involving child development, parental development, and strengthening of family unity. The psychometric properties of the psychological and the social dimension in the child self-report questionnaire were reasonably good.

    Conclusions: The children with imperforate anus might have some psychosocial difficulties, though informants do not agree. According to self-report questionnaires, the children appear to be well-adjusted, despite functional bowel problems. Parents of children with imperforate anus have to go through difficult experiences associated with their child s malformation, though some parents also report positive experiences. Psychosocial issues seem crucial to children with imperforate anus and to their parents, and qualified individualized assistance should be a central part of their continuing care to ameliorate or prevent difficulties. Collaboration with expertise from child and adolescent psychiatry may be required. Child autonomy needs more attention. Psychosocial interventions are requested as well as a follow-up study on these children and their parents. Further development of the measurement tools, the study-specific questionnaires, is required.

  • 7.
    Nisell, Margret
    Department of Woman and Child Health Child and Adolescent Psychiatric Unit, Karolinska Institutet.
    Psychosocial consequences of high and intermediate imperforate anus2005Licentiatavhandling, sammanläggning (Övrigt vetenskapligt)
    Abstract [en]

    Imperforate anus including lack of a normal anorectum is an uncommon malformation. The parents of children born with high and intermediate imperforate anus have to take a big responsibility for the follow-up treatment. It has been revealed that children with imperforate anus have psychosocial problems, though knowledge of this is limited.

    Aim: The overall aim of this thesis was to explore psychosocial consequences on children with high and intermediate imperforate anus and their parents.

    Methods: In Paper I, the purpose was to illuminate the children s and parents experiences of imperforate anus and to create a baseline for further research. Interviews were done with three patients with high imperforate anus who had had severe problems with the malformation, and with their parents (5). Answers to the open-ended questions were analyzed with a qualitative method, editing analysis style . In Paper II and Paper III, study-specific questionnaires were used to collect data from 25 children (8-13 years old) with high and intermediate imperforate anus, and from their parents. The questionnaires comprised 59 items for the parents and 45 items for the children, covering psychosocial domains, one physical domain and one domain on experiences of hospital care. The parents filled in the Child Behavior Checklist (CBCL), and the children s teachers filled in the Teacher s Report Form (TRF). Two groups of children along with their parents served as comparison groups. They included 30 children with juvenile chronic arthritis and 32 healthy children.

    Results: Paper I: The parents were outspoken in the interviews, and the children s answers were meagre. Four categories of effects of the malformation were revealed: physical, emotional, social, and family. The emotional effects permeated the interviews; the parents suffering was overwhelming. In Paper II, the children with imperforate anus displayed an overall positive attitude; they reported that they were in a good mood, that they liked school, and that they had good relationships with peers. Furthermore, the children had fecal incontinence and constipation, according to parents. In the CBCL, the children in the index group were assessed to have significantly more emotional/behavioral problems than the children in Comparison Group I. In the TRF, the teachers reported few symptoms for the index group children. Paper III showed disagreement on psychosocial variables from children with imperforate anus and their mothers (on a pair level). Differences were found in particular on psychological variables, i.e. the child s emotional life. The competence scales in the CBCL revealed no differences between the index group and the other two groups. In the TRF, the teachers assessed the children with imperforate anus to be less adapted and adjusted in school than the children in comparison groups.

    Conclusions: Parents of children with high imperforate anus have to go through difficult experiences associated with the malformation. Children with imperforate anus in this study seem to be well adjusted psychosocially, despite fecal incontinence and/or constipation. The children might have some psychosocial difficulties, though informants do not agree. It is vital to assess the children s psychosocial function from more than a single informant. Psychosocial issues are crucial to children with imperforate anus and to their parents, and qualified advice and assistance should be a central part of their continuing care. Perhaps collaboration with expertise from child and adolescent psychiatry may be required.

  • 8.
    Nisell, Margret
    Karolinska institutet.
    Samverkan Barnsomatik och Barn- och ungdomspsykiatri vid Astrid Lindgrens barnsjukhus1999Rapport (Övrigt vetenskapligt)
  • 9.
    Nisell, Margret
    et al.
    Child and Adolescent Psychiatric Unit, Department of Woman and Child Health, Karolinska Institutet, Stockholm.
    Brodin, Ulf
    The Medical Statistics Unit, Department for Learning, Informatics, Management and Ethics (LIME), Karolinska Institutet, Stockholm.
    Christensson, Kyllike
    Reproductive and Perinatal Health Care Unit, Department of Woman and Child Health, Karolinska Institutet, Stockholm.
    Rydelius, Per-Anders
    Child and Adolescent Psychiatric Unit, Department of Woman and Child Health, Karolinska Institutet, Stockholm.
    The Imperforate Anus Psychosocial Questionnaire (IAPSQ): Its construction and psychometric properties2009Ingår i: Child and Adolescent Psychiatry and Mental Health, ISSN 1753-2000, Vol. 3, nr 15Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    The origin of the present study was to develop the liaison work between the disciplines of child and adolescent psychiatry and paediatric surgery and nursing, so as to improve the quality of treatment and care of a group of children with imperforate anus (IA) and their families. Imperforate anus is a congenital disease involving a deformity of the anorectum. The early surgery and invasive follow-up treatment associated with IA may affect the child psychosocially, including the childparent relationship. By developing and testing a questionnaire for children born with anorectal anomalies, a tool for measuring psychosocial functioning can be realized.

    Methods:

    First, a literature review on "Imperforate Anus" was performed. Second, an exploratory interview study was conducted with patients/adolescents with IA and their parents. The findings from these interviews were the foundation for construction of the questionnaire. The Imperforate Anus Psychosocial Questionnaire (IAPSQ) was tested and revised three times before its completion. It contains 45 items on Likert scales. A total of 87 children completed the IAPSQ: 25 children with IA and two comparison groups. Face and content validity were considered. The Rasch approach, an item response theory model, was used to evaluate the psychometric properties of the IAPSQ, where item difficulty and person ability are concurrently approximated.

    Results:

    The findings of the Rasch analysis revealed that the psychological dimension was reasonable, and that person reliability (0.83) was moderate and item reliability (0.95) was sufficient. The social dimension showed satisfactory item reliability (0.87). The person reliability (0.52) of the social dimension was weak. Content validity seemed to be established and construct validity was recognized on the psychological dimension.

    Conclusion:

    The IAPSQ provides a reasonably valid and reliable measure of psychosocial functioning for clinical use among children with IA, although some revisions are suggested for the next version of the IAPSQ. By using the Rasch model, we discovered that specific items should be discarded and other items should be reformulated to make the questionnaire more "on target". The social dimension has to be expanded with further items to reasonably capture a social dimension.

  • 10.
    Nisell, Margret
    et al.
    Röda Korsets Högskola. Child and Adolescent Psychiatric Unit, Department of Woman and Child Health, Karolinska Institutet, Stockholm.
    Igl, Wilmar
    Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm.
    Öjmyr-Joelsson, Maria
    Pediatric Surgery Unit, Department of Woman and Child Health, Karolinska Institutet, Stockholm.
    Frenckner, Björn
    Pediatric Surgery Unit, Department of Woman and Child Health, Karolinska Institutet, Stockholm.
    Rydelius, Per-Anders
    Child and Adolescent Psychiatric Unit, Department of Woman and Child Health, Karolinska Institutet, Stockholm.
    Christensson, Kyllike
    Reproductive and Perinatal Health Care Unit, Department of Woman and Child Health, Karolinska Institutet, Stockholm.
    Social Issues Among Children With High or Intermediate Imperforate Anus: A Proxy Perspective2009Ingår i: Journal of Child and Adolescent Psychiatric Nursing, ISSN 1744-6171, Vol. 22, nr 3, s. 132-142Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    PROBLEM:  Children with imperforate anus (IA) may be psychosocially affected.

    METHODS:  Parents of children with IA and parents in two comparison groups rated their children using a study-specific questionnaire and the Competence Scales in the Child Behavior Checklist (CBCL). Teachers rated Academic and Adaptive Functioning Scales in the Teacher's Report Form (TRF).

    FINDINGS:  School items were rated favorably by the fathers of children with IA, and mothers reported less expression of their children's will. Children with IA were socially competent according to CBCL, although they received lower ratings on the TRF.

    CONCLUSIONS:  Psychosocial issues seem to be challenging for children with IA, and this needs attention in care management.

  • 11.
    Nisell, Margret
    et al.
    Department of Woman and Child Health, Child and Adolescent Psychiatric Unit, Karolinska Institutet, Stockholm.
    Öjmyr-Joelsson, Maria
    Department of Woman and Child Health, Pediatric Surgery Unit, Karolinska Institutet, Stockholm.
    Frenckner, Björn
    Department of Woman and Child Health, Pediatric Surgery Unit, Karolinska Institutet, Stockholm.
    Rydelius, Per-Anders
    Department of Woman and Child Health, Child and Adolescent Psychiatric Unit, Karolinska Institutet, Stockholm.
    Christensson, Kyllike
    Department of Woman and Child Health, Reproductive and Perinatal Health Unit, Karolinska Institutet, Stockholm.
    How a family is affected when a child is born with anorectal malformation: Interviews with three patients and their parents2003Ingår i: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 18, nr 6, s. 423-432Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Increased knowledge about families with a malformed child affects nursing practice. This study illuminates the experiences and psychosocial situation of 3 patients with imperforate anus and their parents. A qualitative method has been used to analyze the data. We found that the parents’ experiences of suffering were overwhelming and that the 3 patients had been depressed during periods. The patients were not as open as their parents; we need to devise better tools to explore and understand children’s experiences. The children and their parents need special care and an opportunity to express their anxieties.

  • 12.
    Nisell, Margret
    et al.
    Röda Korsets Högskola.
    Öjmyr-Joelsson, Maria
    Bowel Therapy Unit and a Quality Coordinator of Nursing, Pediatric Surgery Unit, Karolinska Institutet, Astrid Lindgren Children's Hospital, Stockholm.
    Frenckner, Björn
    Pediatric Surgery Unit, Karolinska Institutet, Astrid Lindgren Children's Hospital, Stockholm.
    Rydelius, Per-Anders
    Child and Adolescent Psychiatric Unit, Karolinska Institutet, Astrid Lindgren Children's Hospital, Stockholm.
    Christensson, Kyllike
    Reproductive and Perinatal Health Care Unit; Department of Woman and Child Health, Karolinska Institutet, Astrid Lindgren Children's Hospital, Stockholm.
    Psychosocial Experiences of Parents of a Child With Imperforate Anus2009Ingår i: Journal for Specialists in Pediatric Nursing, ISSN 1744-6155, Vol. 14, nr 4, s. 221-229Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    PURPOSE.  This study aims to examine the psychosocial experiences of parents of children with imperforate anus (IA) and to describe their potential positive experiences.

    DESIGN AND METHODS.  Parents of IA children and a comparison group answered a questionnaire, which was analyzed quantitatively and with manifest content analysis.

    RESULTS.  Social relationships and respect for the child's will were more affected among IA mothers. Positive experiences were revealed in relation to the child, the parent, and the family.

    PRACTICE IMPLICATIONS.  Support to parents in caring for a child with IA should be individualized and occasionally undertaken through collaboration with experts from child and adolescent psychiatry.

  • 13.
    Nisell, Margret
    et al.
    Röda Korsets Högskola.
    Öjmyr-Joelsson, Maria
    Pediatric Surgery Unit, Department of Woman and Child Health, Karolinska Institutet, Stockholm.
    Frenckner, Björn
    Pediatric Surgery Unit, Department of Woman and Child Health, Karolinska Institutet, Stockholm.
    Rydelius, Per-Anders
    Child and Adolescent Psychiatric Unit, Department of Woman and Child Health, Karolinska Institutet, Stockholm.
    Christensson, Kyllike
    Department of Reproductive and Perinatal Health Care, Karolinska Institutet, Stockholm.
    Views on Psychosocial Functioning: Responses from Children with Imperforate Anus and Their Parents2008Ingår i: Journal of Pediatric Health Care, ISSN 0891-5245, E-ISSN 1532-656X, Vol. 22, nr 3, s. 166-174Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Introduction

    High and intermediate imperforate anus (IA) is a congenital malformation that may entail psychosocial consequences. The objective was to examine disagreement on psychosocial functioning in reports between children with high and intermediate IA and their mothers.

    Method

    Twenty-five children with IA and their mothers participated, including two groups for comparison. The responses on 15 psychosocial variables were compared on pair-level, between the mothers and their child, within each group.

    Results

    Statistically significant differences were found on the psychological variables in all groups, for example, feelings of sadness. For responses related to the social variables, few statistical discrepancies were found, except for the items “bullied” and “teased.” Two specific discrepancies emerged in responses from children with IA and their mothers, the child's self-confidence and the mothers' thinking about their child's disability.

    Discussion

    It is vital to gather information from both the child and the parents in order to obtain a complete assessment of the child. The course of disagreement can give valuable information for future care, including where to exert extra effort.

  • 14.
    Wigander, Helena
    et al.
    Pediatric Surgery Unit, Department of Women’s and Children’s Health, Astrid Lindgren Children’s Hospital, Karolinska Institutet, Stockholm.
    Frenckner, Björn
    Pediatric Surgery Unit, Department of Women’s and Children’s Health, Astrid Lindgren Children’s Hospital, Karolinska Institutet, Stockholm.
    Wester, Tomas
    Pediatric Surgery Unit, Department of Women’s and Children’s Health, Astrid Lindgren Children’s Hospital, Karolinska Institutet, Stockholm.
    Nisell, Margret
    Child and Adolescent Psychiatric Unit, Department of Women’s and Children’s Health, Astrid Lindgren Children’s Hospital, Karolinska Institutet, Stockholm.
    Öjmyr-Joelsson, Maria
    Pediatric Surgery Unit, Department of Women’s and Children’s Health, Astrid Lindgren Children’s Hospital, Karolinska Institutet, Stockholm.
    Translation and cultural adaptation of the Hirschsprung’s Disease/Anorectal Malformation Quality of life Questionnaire (HAQL) into Swedish2014Ingår i: Pediatric surgery international (Print), ISSN 0179-0358, E-ISSN 1437-9813, Vol. 30, nr 4, s. 401-406Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose

    Children with anorectal malformation or Hirschsprung’s Disease (HD) often have functional problems with constipation or incontinence. The Hirschsprung’s Disease/Anorectal malformation Quality of life Questionnaire (HAQL) developed in the Netherlands is a disease-specific instrument measuring the quality of life (QoL) of children and adolescents with fecal incontinence. HAQL includes several domains with questions concerning diet, laxatives, constipation, diarrhea, urine and fecal incontinence, in addition to social and emotional functioning, body image, and physical symptoms. The purpose of the study was to translate and culturally adapt the HAQL questionnaire into Swedish.

    Method

    The translation was carried out according to accepted translation guidelines and a backward/forward translation method was used.

    Results

    The translation correlated well with the original. All in all the Swedish and the Dutch versions agreed well. The Swedish translators chose to use a more simplified language in the questionnaires intended for the children, but used another choice of words in the proxy version and the adolescents’ version.

    Conclusions

    The translation of the HAQL instrument into Swedish gives us a disease-specific QoL instrument for children and adolescents born with HD and anorectal malformations (ARM). The translated and culturally adapted HAQL instrument is included in a survey regarding children and adolescents born with ARM.

  • 15.
    Wigander, Helena
    et al.
    Karolinska Institutet / Karolinska University Hospital.
    Nisell, Margret
    Röda Korsets Högskola, Hälsovetenskapliga institutionen. Karolinska Institutet.
    Frenckner, Björn
    Karolinska Institutet / Karolinska University Hospital.
    Wester, Tomas
    Karolinska Institutet / Karolinska University Hospital.
    Brodin, Ulf
    Karolinska Institutet.
    Öjmyr-Joelsson, Maria
    Karolinska Institutet / Karolinska University Hospital.
    Quality of life and functional outcome in Swedish children with low anorectal malformations: a follow-up study.2019Ingår i: Pediatric surgery international (Print), ISSN 0179-0358, E-ISSN 1437-9813, Vol. 35, nr 5, s. 583-590Artikel i tidskrift (Refereegranskat)
    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.

  • 16.
    Wigander, Helena
    et al.
    Karolinska Institutet / Karolinska University Hospital.
    Öjmyr-Joelsson, Maria
    Karolinska Institutet / Karolinska University Hospital.
    Frenckner, Björn
    Karolinska Institutet / Karolinska University Hospital.
    Wester, Tomas
    Karolinska Institutet / Karolinska University Hospital.
    Nisell, Margret
    Röda Korsets Högskola, Hälsovetenskapliga institutionen. Karolinska Institutet.
    Impact of Low Anorectal Malformation on Parenting Stress: A Mixed-Method Study2018Ingår i: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 42, s. e45-e51Artikel i tidskrift (Refereegranskat)
    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.

  • 17.
    Öjmyr-Joelsson, Maria
    et al.
    Pediatric Surgery Unit, Department of Woman and Child Health, Karolinska Institutet, Stockholm.
    Christensson, Kyllike
    Reproductive and Perinatal Health Care Unit, Department of Woman and Child Health, Karolinska Institutet, Stockholm.
    Frenckner, Björn
    Pediatric Surgery Unit, Department of Woman and Child Health, Karolinska Institutet, Stockholm.
    Nisell, Margret
    Child and Adolescent Psychiatric Unit, Department of Woman and Child Health, Karolinska Institutet, Stockholm.
    Lindholm, Torun
    Department of Psychology, Stockholm University, Stockholm.
    Children with high and intermediate imperforate anus: remembering and talking about medical treatment carried out early in life2008Ingår i: Pediatric surgery international (Print), ISSN 0179-0358, E-ISSN 1437-9813, Vol. 24, nr 9, s. 1009-1015Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Treatment of children with high and intermediate imperforate anus entails several different surgical procedures during the first 3–12 months of life, which are accompanied by a strict follow-up treatment regimen. It has not been studied whether the children remember this treatment carried out early in life. Research has shown that small children may demonstrate so-called non-verbal memories of salient events occurring in early childhood. The purpose was to examine whether children with imperforate anus showed distressing memories of previous medical treatment and whether parent–child dialog about medical treatment is related to the child’s psychosocial functioning later in life. Parents of 25 children (9 boys, 16 girls) with high and intermediate imperforate anus participated in the study. The mean age among the children was 10.5 years (range 8.0–13.6). A comparison group of 30 children (5 boys and 25 girls) with juvenile chronic arthritis also participated in the study. The mean age was 10.6 years (range 7.8–13.6). All parents answered the Child Behavior Checklist (CBCL/4-18) and a study-specific questionnaire. Children in both groups were reported to show distressing memories of early treatment. Children who had been talked to showed good psychosocial function and were in a better mood and less angry than those who had not been talked to. Parent–child discussions about the child’s experiences of medical treatment did not seem to be harmful or in any other way detrimental to the child, instead such discussions seemed to facilitate the child’s psychosocial functioning.

  • 18.
    Öjmyr-Joelsson, Maria
    et al.
    Pediatric Surgery Unit, Department of Women’s and Children’s Health, Astrid Lindgren Children’s Hospital, Karolinska Institutet, Stockholm.
    Frenckner, Björn
    Pediatric Surgery Unit, Department of Women’s and Children’s Health, Astrid Lindgren Children’s Hospital, Karolinska Institutet, Stockholm.
    Rydelius, Per-Anders
    Child and Adolescent Psychiatric Unit, Department of Women’s and Children’s Health, Astrid Lindgren Children’s Hospital, Karolinska Institutet, Stockholm.
    Nisell, Margret
    Child and Adolescent Psychiatric Unit, Department of Women’s and Children’s Health, Astrid Lindgren Children’s Hospital, Karolinska Institutet, Stockholm.
    Children with high and intermediate imperforate anus: their experiences of hospital care2011Ingår i: Pediatric surgery international (Print), ISSN 0179-0358, E-ISSN 1437-9813, Vol. 27, nr 10, s. 1117-1122Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose

    The purpose of this study was to examine the experiences of children with high and intermediate imperforate anus (IA), and specifically their experiences of hospital care.

    Methods

    Twenty-five children born with high and intermediate IA participated; 9 boys and 16 girls. The mean age was 10.5 years (range 8.0–13.6). Two control groups were involved in the study. A self-report questionnaire was used to gather the data concerning children’s experiences of hospital care. Items were scored on a 5-point Likert scale.

    Results

    The children’s responses on hospital care items scored high. The children with IA reported being less satisfied with the information given, and understood less why they needed to visit the hospital than did the children in the two control groups.

    Conclusion

    The children’s experiences of care seemed to be positive even though the children born with IA are subjected to invasive treatment. More research is called for in the unexplored area of information to the children, and particularly to the children born with a defect. Children’s views are important and should always be considered, as their answers most certainly reflect a genuine experience, contributing to the further development of their specific care.

  • 19. Öjmyr-Joelsson, Maria
    et al.
    Nisell, Margret
    Frenckner, Björn
    Rydelius, Per-Anders
    Christensson, Kyllike
    A Gender Perspective on the Extent to which Mothers and Fathers Each Take Responsibility for Care of a Child with High and Intermediate Imperforate Anus2009Ingår i: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 24, nr 3, s. 207-215Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Imperforate anus is a malformation of the child's anus. Parents' experiences of responsibility for care of the child may differ. The aim of this study was to evaluate a gender perspective on the extent to which mothers and fathers each take responsibility for the care of a child with high and intermediate imperforate anus. Parents of children with imperforate anus and two control groups of children and parents participated. Data collection with questionnaires focusing on responsibility was performed. In conclusion, our study revealed additional evidence of unevenly divided parental responsibility for care of a child with a chronic condition. The mothers in this study were shown to be the primary caregiver.

  • 20.
    Öjmyr-Joelsson, Maria
    et al.
    Division of Pediatric Surgery, Q2:03, Astrid Lindgren Children's Hospital, Karolinska University Hospital, Stockholm.
    Nisell, Margret
    Child and Adolescent Psychiatric Unit, Astrid Lindgren Children's Hospital, Karolinska University Hospital, Stockholm.
    Frenckner, Björn
    Division of Pediatric Surgery, Q2:03, Astrid Lindgren Children's Hospital, Karolinska University Hospital, Stockholm.
    Rydelius, Per-Anders
    Child and Adolescent Psychiatric Unit, Astrid Lindgren Children's Hospital, Karolinska University Hospital, Stockholm.
    Christensson, Kyllike
    Reproductive and Perinatal Health Care, Department of Woman and Child Health, Karolinska Institutet, Stockholm.
    High and intermediate imperforate anus: psychosocial consequences among school-aged children2006Ingår i: Journal of Pediatric Surgery, ISSN 0022-3468, E-ISSN 1531-5037, Vol. 41, nr 7, s. 1272-1278Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background/Purpose

    Imperforate anus is an unusual malformation, which, even after surgical intervention, usually entails constipation and fecal incontinence. This study aimed to evaluate ongoing psychosocial effects of this birth defect in school-aged children.

    Methods

    Twenty-five children born with high and intermediate imperforate anus participated in the study, along with their parents and classroom teachers. One group of healthy children and 1 group of children with juvenile chronic arthritis, along with their parents, served as controls. Children and parents individually answered a questionnaire devised for this study. Parents filled out the Child Behavior Checklist and the children's teacher filled out the Teacher's Report Form.

    Results

    According to test results, children with imperforate anus were happy and optimistic. They liked school better and reported better relationships with schoolmates than the other children. The index group reported statistically significantly more frequent constipation. According to parental responses, the imperforate-anus children suffered from fecal incontinence and odor, as well as constipation (P < .001). Index-group parents reported on the Child Behavior Checklist that their children had more emotional and behavioral problems. On the Teacher's Report Form, teachers reported few problems for the same children.

    Conclusions

    Patients with imperforate anus did not experience psychosocial impairment despite significant functional problems.

  • 21.
    Öjmyr-Joelsson, Maria
    et al.
    Astrid Lindgren Children’s Hospital, Department of Woman and Child Health, Karolinska Institutet, Stockholm.
    Nisell, Margret
    Astrid Lindgren Children’s Hospital, Department of Woman and Child Health, Karolinska Institutet, Stockholm.
    Frenckner, Björn
    Astrid Lindgren Children’s Hospital, Department of Woman and Child Health, Karolinska Institutet, Stockholm.
    Rydelius, Per-Anders
    Astrid Lindgren Children’s Hospital, Department of Woman and Child Health, Karolinska Institutet, Stockholm.
    Christensson, Kyllike
    Astrid Lindgren Children’s Hospital, Department of Woman and Child Health, Karolinska Institutet, Stockholm.
    Parental Experiences: Care of Children With High and Intermediate Imperforate Anus2006Ingår i: Clinical Nursing Research, ISSN 1054-7738, E-ISSN 1552-3799, Vol. 15, nr 4, s. 290-305Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    In this study parental experiences of care of children with high and intermediate imperforate anus were evaluated. A group of 45 parents of children with high and intermediate imperforate anus and two control groups participated. Data collection with individual questionnaires concerning the child's hospital care, information to the parent and the child, and involvement in the care of the child were performed. Parents of children with imperforate anus reported being less satisfied with the care of their child, and they were less content with information about their child's treatment compared with the control groups. The parents had been extremely involved in the follow-up treatment. Constipation and fecal incontinence are common and involve suffering for the children and their parents. Parents have to be motivated and supportive and have a great deal of patience to be able to put up with caring for these children, and it seems as if health care professionals have underestimated their problems.

  • 22.
    Öst, Elin
    et al.
    Karolinska Institutet / Karolinska University Hospital, Astrid Lindgren Children’s Hospital.
    Frenckner, Björn
    Karolinska Institutet / Karolinska University Hospital, Astrid Lindgren Children’s Hospital.
    Nisell, Margret
    Röda Korsets Högskola, Hälsovetenskapliga institutionen.
    Burgos, Carmen Mesas
    Karolinska Institutet / Karolinska University Hospital, Astrid Lindgren Children’s Hospital.
    Öjmyr-Joelsson, Maria
    Karolinska Institutet / Karolinska University Hospital, Astrid Lindgren Children’s Hospital.
    Health-related quality of life in children born with congenital diaphragmatic hernia2018Ingår i: Pediatric surgery international (Print), ISSN 0179-0358, E-ISSN 1437-9813, Vol. 34, nr 4, s. 05-414Artikel i tidskrift (Refereegranskat)
    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.

  • 23.
    Öst, Elin
    et al.
    Karolinska Institutet / Karolinska University Hospital.
    Nisell, Margret
    Röda Korsets Högskola, Hälsovetenskapliga institutionen.
    Burgos, Carmen Mesas
    Karolinska Institutet / Karolinska University Hospital.
    Frenckner, Björn
    Karolinska Institutet / Karolinska University Hospital.
    Öjmyr-Joelsson, Maria
    Karolinska Institutet / Karolinska University Hospital.
    Behavioral, emotional and social functioning in children born with congenital diaphragmatic hernia2018Ingår i: Pediatric surgery international (Print), ISSN 0179-0358, E-ISSN 1437-9813, Vol. 34, nr 6, s. 653-661Artikel i tidskrift (Refereegranskat)
    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.

  • 24.
    Öst, Elin
    et al.
    Karolinska Institutet / Astrid Lindgren Children’s Hospital.
    Nisell, Margret
    Röda Korsets Högskola, Avdelningen Teknik och Välfärd.
    Frenckner, Björn
    Karolinska Institutet / Astrid Lindgren Children’s Hospital.
    Mesas Burgos, Carmen
    Karolinska Institutet / Astrid Lindgren Children’s Hospital.
    Öjmyr-Joelsson, Maria
    Karolinska Institutet / Astrid Lindgren Children’s Hospital.
    Parenting stress among parents of children with congenital diaphragmatic hernia2017Ingår i: Pediatric surgery international (Print), ISSN 0179-0358, E-ISSN 1437-9813, Vol. 33, nr 7, s. 761-769Artikel i tidskrift (Refereegranskat)
    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.

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