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

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

Psychsocial consequences of high and intermediate imperforate anus

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

Psychosocial aspects on children with imperforate anus and their parents

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

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

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

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

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

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

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.status: publishe