Ready for Transfer to Adult Care? A Triadic Evaluation of Transition Readiness in Adolescents With Congenital Heart Disease and Their Parents.

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.

Quality of life and functional outcome in Swedish children with low anorectal malformations: a follow-up study.

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.

Parental uncertainty about transferring their adolescent with congenital heart disease to adult care.

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 were 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.

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

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.

Behavioral, emotional and social functioning in children born with congenital diaphragmatic hernia.

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.

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

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.

Parenting stress among parents of children with congenital diaphragmatic hernia.

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.

Adolescents with congenital heart disease: their opinions about the preparation for transfer to adult care.

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.

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.

Translation and cultural adaptation of the Hirschsprung's Disease/Anorectal Malformation Quality of life Questionnaire (HAQL) into Swedish.

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.

Children with high and intermediate imperforate anus: their experiences of hospital care.

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.

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 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.

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 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.

A gender perspective on the extent to which mothers and fathers each take responsibility for care of a child with high and intermediate imperforate anus.

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.

The Imperforate Anus Psychosocial Questionnaire (IAPSQ): its construction and psychometric properties.

UNLABELLED: 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 child-parent 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.

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.

Views on psychosocial functioning: responses from children with imperforate anus and their parents.

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.

Parental experiences: care of children with high and intermediate imperforate anus.

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.

High and intermediate imperforate anus: psychosocial consequences among school-aged children.

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.

How a family is affected when a child is born with anorectal malformation. Interviews with three patients and their parents.

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.