Margret Nisell

Adolescents With Congenital Heart Disease and Their Parents : Needs Before Transfer to Adult Care.

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.

Social issues among children with high or intermediate imperforate anus: a proxy perspective.

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 Teachers Report Form (TRF). FINDINGS School items were rated favorably by the fathers of children with IA, and mothers reported less expression of their childrens 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.

Health-related quality of life in children born with congenital diaphragmatic hernia

PurposeThe aim of this study was to examine health-related quality of life (HRQoL) in children born with congenital diaphragmatic hernia (CDH).MethodsBetween 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.ResultsThe 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.ConclusionsHealth-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.

Psychosocial Experiences of Parents of a Child With Imperforate Anus

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 childs 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.

Children with high and intermediate imperforate anus: remembering and talking about medical treatment carried out early in life.

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.

Parenting stress among parents of children with congenital diaphragmatic hernia

PurposeThe aim of this study was to examine parental stress among parents of children with congenital diaphragmatic hernia (CDH).MethodsBetween 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.ResultsParents 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.ConclusionsParental 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.

Impact of Low Anorectal Malformation on Parenting Stress: A Mixed-Method Study

&NA; 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. Highlights:A sequential explanatory mixed‐method design was used.Parents of children with low ARM reported low levels of stress.Three themes were revealed: Communication between parents, Expectations of parenthood, and Challenges concerning parenthood.Parents spoke of earlier experiences of emotional stress, feelings of guilt, and chaos.