What challenges do siblings of children with chronic disorders express to their parents? A thematic analysis of 73 sibling-parent dialogues.

PURPOSE: The study explored challenges experienced by siblings of children with chronic disorders, as expressed by siblings in parent-child dialogues. DESIGN AND METHODS: Seventy-three parent-child dialogues (M duration = 28.6 min) were analyzed using qualitative thematic analysis. The dialogues took place within the SIBS group intervention for siblings and parents of children with chronic disorders. The siblings (aged 8 to 14 years) had brothers and sisters with autism spectrum disorders, ADHD, rare disorders, cerebral palsy, or severe mental health disorders. The data are from session 5 in the SIBS intervention, in which the siblings are to express their wishes about family-related challenges (e.g., desired changes) to their parents. The parents are encouraged to listen, explore, and validate the child's perspective before discussing solutions. RESULTS: Most of the family-oriented challenges the siblings expressed were related to the diagnosis of the brother or sister with a disorder. Four main themes were identified: (1) Family life (e.g., limitations in family activities); (2) The diagnosis (e.g., concerns about the future); (3) Violence; and (4) Important relationships. CONCLUSION: The siblings experienced challenges and difficult emotions in interactional processes in which the diagnosis affected family life and relationships. The study adds a new dimension to the field by identifying siblings' expressed challenges based on parent-child dialogues. PRACTICE IMPLICATIONS: Identified themes can guide how parents should meet and address siblings' needs, how health care providers inform and support parents in doing so, and emphasize the relevance of interventions targeting family-level risk and resilience factors.

Measuring family communication in pediatric nursing: Psychometric properties of the Parent-Child Communication Scale - Child Report (PCCS-CR).

PURPOSE: Communication quality is an essential indicator of family functioning and represents an important outcome after pediatric nursing interventions. However, few well-documented child-report questionnaires for family communication exist. We aimed to document the psychometric properties of a previously developed child-rated family communication scale for use in pediatric nursing. DESIGN AND METHODS: We examined the Parent-Child Communication Scale - Child Report (PCCS-CR) in terms of factor structure, convergent validity against the Experiences in Close Relationships-Relationship Structures scale (ECR-RS), and known-groups validity between a sample of siblings of children with pediatric health conditions and controls. The sample comprised 101 siblings of children with a pediatric health condition and 44 controls (M age = 11.5 years, SD = 2.2). RESULTS: We confirmed a two-factor structure of the PCCS-CR. One factor is communication from the child to the parent, labelled child communication (e.g., "I discuss problems with my parents") and the other is communication from the parent to the child, labelled parent communication (e.g., "My parent is a good listener"). Convergent validity of the PCCS-CR was demonstrated through correlations with ECR-RS (r = -0.73 to -0.22, p ≤ .05). Further, construct validity through differences between families with and without a child with a pediatric health condition was demonstrated (g = 0.36-0.83, p ≤ .052). CONCLUSION: The PCCS-CR appears to be a psychometrically sound measure of parent-child communication from the child's point of view. PRACTICAL IMPLICATIONS: The PCCS-CR can be administered in pediatric nursing care and can be used to target and measure the outcomes of interventions aimed at enhancing family functioning.

Available, but not always accessible: A nationwide, qualitative study of multidisciplinary healthcare providers' experiences with follow-up care after paediatric brain tumour.

OBJECTIVE: Paediatric brain tumour (PBT) survivors face high risks of disabling long-term and late effects. Whether survivors' needs are met in a system with publicly funded services, but in the absence of a formal long-term follow-up model, is uncertain. Empirically based recommendations for a national model are needed. We explored multidisciplinary healthcare providers' (HCP) experiences with providing such care. METHODS: We conducted five focus-group interviews and five individual interviews with a nationally representative sample of 33 Norwegian HCPs. Focus-group interviews and individual interviews were analysed using systematic text condensation. RESULTS: Three main themes were identified: (a) 'Providing care above and beyond system constraints', describing a perceived discrepancy between HCPs' knowledge of, and their ability to meet, the survivors' needs. (b) 'System barriers to providing optimal follow-up care', describing a perceived lack of routines for communication and coordination between the HCPs and existing care services. (c) 'Nurses and shared-care to improve care', including empowering nurses and establishing routines for collaborations and areas of responsibilities. CONCLUSION: The current healthcare system was perceived not to fully meet the survivors' needs. Nurse-led care models, including standardised patient-care pathways, were suggested to increase the accessibility of already-existing services and thus to improve long-term follow-up care.

Psychosocial Functioning in Siblings of Children With Rare Disorders Compared to Controls.

Siblings of children with chronic disorders are at increased risk of psychosocial problems. The risk may be exacerbated when the chronic disorder is rare and limited medical knowledge is available, due to more uncertainty and feelings of isolation. We examined mental health, parent-child communication, child-parent relationship quality, and social support among 100 children aged 8 to 16 years (M age 11.5 years, SD = 2.2; 50.0% boys, 50.0% girls). Fifty-six were siblings of children with rare disorders, and 44 were controls. The siblings of children with rare disorders (herein, siblings) were recruited from a resource centre for rare disorders and comprised siblings of children with a range of rare disorders including neuromuscular disorders and rare chromosomal disorders with intellectual disability. Controls were recruited from schools. Self-reported child mental health was significantly poorer for siblings compared to controls (effect size difference d = 0.75). Parent-reported child mental health was not significantly different between the groups (d = -0.06 to 0.16). Most child-parent relationships (anxiety/avoidance; mothers/fathers) were significantly poorer for siblings compared to controls (d = 0.47 to 0.91). There was no difference between groups in anxious relation with mother. Parent-child communication was significantly poorer for siblings compared to controls (d = -0.87 to -0.75). Social support was significantly poorer for siblings compared to controls (d = 0.61). We conclude that siblings of children with rare disorders display more psychosocial problems than controls. Interventions are indicated to prevent further maladjustment for siblings.

Emotional Experiences Among Siblings of Children With Rare Disorders.

OBJECTIVE: This research aimed to provide new knowledge about the emotional experiences of siblings of children with rare disorders. METHODS: Qualitative thematic analysis was conducted based on videotapes of 11 support groups for 58 siblings aged 7-17 years (Mage = 11.4 years, SD = 2.4) of children with rare disorders. RESULTS: Participants described contradictory emotions in three main contexts: (1) implications of the disorder (knowledge, medical issues, prognosis); (2) consequences for family life (practical implications, limitations of the child with disorder, perspectives on the sibling relationship); and (3) consequences for social life (reflections about (ab)normality, reactions from others). Passive coping strategies were frequently described relative to active coping strategies. An emerging dilemma for participants was hiding versus sharing emotional experiences. CONCLUSIONS: Siblings' emotional experiences are characterized by diverse and contradictory feelings. Interventions to promote emotional health in siblings of children with rare disorder should address this complexity.

"She came out of mum's tummy the wrong way". (Mis)conceptions among siblings of children with rare disorders.

Misconceptions or uncertainty about the rare disorder of a sibling may cause adjustment problems among children. New knowledge about their misconceptions may enable genetic counselors to provide targeted information and increase siblings' knowledge. This study aims to describe misconceptions and uncertainties of siblings of children with rare disorders. Content analysis was applied to videotapes of 11 support group sessions with 56 children aged 6 to 17. First, children's statements about the disorder (turns) were categorized into the categories "identity," "cause," "cure," "timeline," and "consequences" and then coded as medically "correct," "misunderstood," or "uncertain." Next, turns categorized as "misunderstood" or "uncertain" were analyzed to explore prominent trends. Associations between sibling age, type of disorder, and frequency of misconceptions or uncertainties were analyzed statistically. Approximately 16 % of the children's turns were found to involve misconceptions or uncertainty about the disorder, most commonly about the identity or cause of the disorder. Misconceptions seemed to originate from information available in everyday family life, generalization of lay beliefs, or through difficulties understanding abstract medical concepts. Children expressed uncertainty about the reasons for everyday experiences (e.g. the abnormal behavior they observed). A lack of available information was described as causing uncertainty. Misconceptions and uncertainties were unrelated to child age or type of disorder. The information needs of siblings should always be addressed during genetic counseling, and advice and support offered to parents when needed. Information provided to siblings should be based on an exploration of their daily experiences and thoughts about the rare disorder.

Factor Structure of the Experiences in Close Relationships-Relationship Structures Scale (ECR-RS) in Siblings of Children with Chronic Disorders.

Our objective was to examine the factor structure of the Experiences in Close Relationships-Relationships Structures (ECR-RS), an attachment-theory based relationship measure, in at-risk sample comprising siblings of children with chronic disorders. Psychometric studies with general populations have demonstrated that the ECR-RS comprises two factors, representing anxiety and avoidance in close relationships. The sample comprised 103 siblings (M age = 11.5 years, SD = 2.2, range 8 to 16 years) of children with chronic disorders and their parents. The siblings completed a 9-item version of the Experiences in Close Relationships-Relationships Structures (ECR-RS) about their relations with mothers and fathers that was analyzed with confirmatory factor analysis. We examined construct validity using correlations between sibling social functioning, measured with the Strengths and Difficulties Questionnaire, and parent mental health, measured with the Hopkins Symptom Checklist-90-Revised. The ECR-RS comprised two factors, anxiety and avoidance, in line with previous studies. Both factors demonstrated significant overlap with sibling social functioning, but not with parental mental health. We conclude that the ECR-RS comprises two factors, anxiety and avoidance, that are related to siblings' social functioning. The ECR-RS can be used as a psychometrically sound measure of relationship anxiety and avoidance in families of children with chronic disorders.

Cultural applicability and desirability of 'Broodles': The first serious game intervention for siblings of children with disabilities.

Objective: Serious games can serve as easily accessible interventions to support siblings of children with disabilities, who are at risk of developing mental health problems. The Dutch serious game 'Broodles' was developed for siblings aged 6-9 years. The current study aims to assess the cultural applicability, desirability, feasibility, and acceptability of 'Broodles' in Norway. Methods: Norwegian siblings (N = 16) aged 6-13 years and parents (N = 12) of children with intellectual disabilities assessed the game. Their feedback data from interviews and questionnaires were sorted using a model of engagement factors in serious games. Results: At pre-use, participants showed interest in the game, and after initial use the participants were overall positive about the format, content and objectives, including validation of emotions and recognition. The participants had suggestions for improved engagement and feasibility. Conclusion: The game was found to be culturally applicable, desirable and acceptable, although Norwegian translation is necessary for further evaluation. Recommendations to enhance engagement were provided, including suggestions to play the game with parents or in a group. Innovation: This initial assessment of the serious game Broodles in a non-Dutch setting shows promise for an innovative way of supporting siblings of children with disabilities.

The development of SIBS-ONLINE, a group-based video conference intervention for siblings of children with chronic disorders and their parents.

Objective: During the last decade a knowledge-based group intervention called SIBS, aiming to prevent psychological difficulties in siblings of children with chronic disorders, has been developed and empirically evaluated. The results are promising, but SIBS has been difficult to implement in areas with low population density. To address the needs of low-density health regions a video conference-based version of SIBS, "SIBS-ONLINE", was developed. Method: SIBS-ONLINE was developed in three phases: 1) Gaining experience by delivering five support groups for siblings during the Covid-19 pandemic over video conference; 2) Developing the SIBS-ONLINE intervention based on the experiences of Phase 1; 3) Pilot testing the SIBS-ONLINE intervention with four groups (14 families). Results: The end-product was SIBS-ONLINE, an intervention for siblings aged 10-16 years and their parents. SIBS-ONLINE consists of three separate sibling and parent groups and three joint sessions delivered over video conference. Intervention materials to enable delivery were developed, such as a manual comprising specification of communication techniques in video conference groups, technical advice, and a detailed description of sessions. Conclusion: The developmental process resulted in a feasible group-based video conference intervention for families of children with chronic health disorders. Innovation: A unique group-based video conference intervention is described and general advice for developers and deliverers of future interventions provided.

Siblings of children with chronic disorders: Family and relational factors as predictors of mental health.

Siblings of children with chronic disorders are at increased risk of mental health problems. Predictors of siblings' mental health require further study to identify children in need of interventions and to design effective intervention programs. Siblings of children with chronic disorders (n = 107; M age = 11.5 years; SD = 2.1, 54.6% girls) and their parents (n = 199; 50.3% mothers) were included in a survey study. Siblings and parents completed questionnaires on mental health. Siblings completed questionnaires on parent-child communication, relationships with parents, and an adjustment measure on the sibling situation. Multiple linear regression analyses were applied to identify predictors of siblings' mental health. Sibling-reported relationship with parents was a significant predictor of sibling mental health reported by siblings, fathers, and mothers (R2 = 0.26 - R2 = 0.46). Siblings' adjustment was significantly associated with fathers' report of siblings' mental health (r = .36), but not mothers' report (r = .17). Siblings' relationships (d = 0.26) and communication (d = 0.33) with mothers were significantly better than with fathers. We conclude that the sibling-parent relationship is a significant factor in identifying siblings at risk and that family-based intervention programs should be developed.

Children's expressions of negative emotions and adults' responses during routine cardiac consultations.

OBJECTIVE: One function of expressing emotion is to receive support. The aim of this study was to assess how children with heart disease express negative emotions during routine consultations, and examine the interaction between children's expressions and adults' responses. METHODS: Seventy children, aged 7-13 years, completed measures of anxiety and were videotaped during cardiology visits. Adult-child interactions were analyzed using the Verona Definitions of Emotional Sequences. RESULTS: Children expressed negative emotion, mainly in subtle ways; however, adults rarely recognized and responded to these expressions. The frequency of children's expressions and adults' responses were related to the child's age, level of anxiety, and verbal participation. CONCLUSION: Children do not openly express negative emotions frequently during routine cardiac consultations; they are more likely to provide subtle cues of negative emotion. When expression of negative emotions does occur, adults may consider using the opportunity to explore the child's emotional experiences.

The validity of a measure of adjustment in siblings of children with developmental and physical disabilities: a brief report.

Background: Few questionnaires are tailored for siblings of children with disabilities. The Negative Adjustment Scale (NAS) was developed to measure siblings' adjustment, but has not yet been validated.Objective: To investigate the factor structure and convergent validity of the NAS.Method: We examined the validity of the NAS in terms of factor structure and convergent validity against a general mental health measure. The sample comprised 107 siblings (M age = 11.5 years, SD = 2.1, 53.8% boys) of children with disabilities.Results: We confirmed a one-factor structure for the NAS. Convergent validity was demonstrated through significant correlations (r=.29-.44) with sibling externalizing and internalizing mental health difficulties.Conclusion: The NAS holds promise as a measure tailored for the assessment of sibling's adjustment.

Group intervention for siblings and parents of children with chronic disorders (SIBS-RCT): study protocol for a randomized controlled trial.

BACKGROUND: Siblings and parents of children with neurodevelopmental disorders are at risk of mental health problems and poorer family communication. Some group interventions for siblings exist, but few have clearly described parent components and none are considered evidence-based. METHODS: We are conducting a randomized controlled trial comparing a five-session manual-based group intervention for siblings (aged 8 to 16 years) and parents of children with neurodevelopmental disorders to a 12-week waitlist, called SIBS-RCT. The intervention comprises three separate sibling and parent group sessions and two joint sessions in which each sibling talks to their parent alone. The intervention aims at improving parent-child communication and covers themes such as siblings' understanding of the neurodevelopmental disorder, siblings' emotions, and perceived family challenges. Participants are recruited through municipal and specialist health centers across Norway. The primary outcome is sibling mental health. Quality of life and family communication are secondary outcomes. Participants are block-randomized to the intervention or 12-week waitlist in groups of six. Measures are collected electronically at pre- and post-intervention/waitlist, as well as 3, 6, and 12 months post-intervention. The main effect to be examined is the difference between the intervention and waitlist at 12 weeks post. All outcomes will also be examined using growth curve analyses. We plan to include 288 siblings and their parents by the end of 2022. DISCUSSION: SIBS-RCT represents a major contribution to the research and practice field towards establishing an evidence-based intervention for siblings. In the event that intervention and waitlist are no different, the impact of SIBS-RCT is still substantial in that we will aim to identify participant subgroups that show positive response and effective components of the SIBS manual by examining group leader adherence as an outcome predictor. This will allow us to continue to re-engineer the SIBS manual iteratively to improve outcomes, and avoid the promotion of a less-than-optimal intervention. TRIAL REGISTRATION: ClinicalTrials.gov NCT04056884 . Registered in August 2019.

Participatory design with children in the development of a support system for patient-centered care in pediatric oncology.

Developing software for children with severe illness poses a number of design challenges. In this paper we describe participatory design methods used in the development of SISOM, a support system for children with cancer age 7-12 to help children elicit and report their symptoms/problems in a child-friendly, age-adjusted manner, and to assist clinicians at the point of care in addressing and integrating children's reported symptoms and problems in patient care. The particular design challenges in the development of a clinical support tool for seriously ill children are described, followed by the participatory design techniques we used to meet these challenges. Healthy children and children with cancer participated actively in different stages of the design process. We describe how children contributed to the graphical design of the system's interface; selection of understandable, child-friendly terms used in the system; iconic and graphical representations; and its usability. The methods applied helped us to significantly improve and adapt SISOM to children's cognitive and emotional developmental stage. Working with children as partners in the design also provided important insights into the role children can play in participatory design that may be helpful for other system developers who wish to design support applications for ill children. Children had very creative design ideas that considerably improved the software. However, system development for seriously ill children also requires psychological and pedagogical insights and design and usability expertise. This limits the role children can play as full design partners.

Children's contributions to designing a communication tool for children with cancer.

In this paper, we describe the roles played as well as contributions made by child participants in the design of an innovative communication tool for children with cancer. SISOM is a handheld, portable computer application with a graphical user interface that is meant to: (1) help children with cancer communicate their symptoms / problems in a child-friendly, age-adjusted manner; and (2) assist clinicians in addressing children's experienced symptoms and problems in patient care. Unlike other applications for children, the purpose of SISOM is not to provide information to ill children but to elicit personal information from them. Thus the application has a unique set of design issues. Healthy and ill children played an important role in different stages in the design process. They made significant contributions to the graphical design of the system's interface; selection of understandable, child-friendly terms used by the system to describe symptoms; iconic and graphical representations; and its usability. We describe the participatory design methods we used that included children and share important insights from this collaborative design process.

Emotional communication in support groups for siblings of children with disabilities.

OBJECTIVE: Support groups are often arranged for siblings of children with disabilities to prevent psychological maladjustment. This study describes how children express emotions in support groups and how group leaders and other children respond. METHOD: Conversations in 17 group sessions for siblings aged 11 to 16 were coded with VR-CoDES to report frequency of emotional expressions and responses. RESULTS: Children expressed negative emotion during group sessions (n=235), 59% as cues and 41%concerns. The immediate response was in 98% of the instances from the group leader. 38% of the responses focused on emotion, cognition or behavior. CONCLUSION: Children express emotions, but seldom respond immediately to others' emotional expressions in support groups. Group leaders should attend to emotion, cognition and behavior more frequently. PRACTICE IMPLICATIONS: Group leaders may better fulfill the support potential of support groups through explicitly stating the role of participants, and by exploring emotional aspects.

Children as design partners in the development of a support system for children with cancer.

Children with cancer experience many symptoms and problems that often remain unreported and untreated. We therefore, developed PedsChoice, a support system for pediatric cancer symptom assessment and management to provide children with a "voice," and assist nurses and physicians to better address children's symptoms and problems in patient care. We used participatory design techniques where healthy children joined our design team. During this process we explored the role s healthy children can appropriately play to inform the design of a system for children with cancer and their contributions and limitations as participants in the design process. We found that healthy children can contribute considerably in the role as testers, informers and to some extent as partners. Children have very creative design ideas that can considerably improve the software. However, system development for seriously ill children also requires psychological and pedagogical insights and design and usability expertise. This limits the role children can play as full design partners.

How children with cancer communicate and think about symptoms.

BACKGROUND: For clinicians to effectively help children with their illness and symptoms, it is important to communicate with them in a language they can understand. METHODS: This study investigates how well children with cancer and healthy children understood 44 symptom terms; their thoughts about these symptoms in terms of causes, consequences, and cures; and what other terms the children use to express these symptoms. It also explores if there are differences in understanding and thoughts about symptoms between children who have the experience of cancer and those who do not. In all, 6 children with cancer and 8 healthy children participated in semistructured interviews. RESULTS: Children demonstrated a good understanding of symptom terms, yet were not always able to explain the symptoms. They had a rich vocabulary to talk about symptoms but did not use childish terms. Children with cancer had a more varied vocabulary for symptoms, but they did not use more medical terms. This study contributes to knowledge about children's understanding of symptoms that can be helpful to clinicians when communicating with children about their illness.