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1.
J Pediatr Nurs ; 76: 91-98, 2024.
Article in English | MEDLINE | ID: mdl-38367476

ABSTRACT

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.


Subject(s)
Parent-Child Relations , Siblings , Humans , Female , Male , Child , Adolescent , Chronic Disease , Siblings/psychology , Parents/psychology , Qualitative Research , Adaptation, Psychological , Sibling Relations , Adult
2.
J Clin Psychol ; 79(8): 1726-1739, 2023 08.
Article in English | MEDLINE | ID: mdl-36799300

ABSTRACT

BACKGROUND: There are no well-established measures of group cohesion, defined as the collaborative bond between group members, in group cognitive behavioral therapy (GCBT) with youth. We therefore examined the Therapy Process Observational Coding System for Child Psychotherapy-Group Cohesion Scale (TPOCS-GC), which has previously only been used with adult samples, in a youth sample. METHODS: Observers coded 32 sessions from 16 groups with 83 youth aged 8 to 15 years (90.7% European White). Youth had anxiety disorders and received manualized GCBT in community clinics. We examined psychometric properties of the TPOCS-GC and its' construct validity in terms of relations with pretreatment variables, alliance and fidelity during treatment, and post-treatment variables. Group cohesion was measured twice during treatment (early and late). RESULTS: The TPOCS-GC was internally consistent (α = 0.72) and was reliably coded (M ICC = 0.61). Higher clinical severity at pretreatment predicted lower early group cohesion. Higher youth age, higher clinical severity at pretreatment, and higher youth-rated early alliance predicted lower late group cohesion. Higher therapist-rated early alliance predicted higher early group cohesion. Higher therapist-rated late alliance predicted higher late group cohesion. Higher late group cohesion predicted lower clinical severity and higher client treatment satisfaction at post-treatment. Early group cohesion did not predict any post-treatment variables. CONCLUSIONS: A four-item version of the TPOCS-GC can be reliably used in youth GCBT. The TPOCS-GC is distinct from, but associated with, multiple clinical variables.


Subject(s)
Professional-Patient Relations , Social Cohesion , Adult , Child , Humans , Adolescent , Psychometrics , Anxiety Disorders/therapy , Anxiety Disorders/psychology , Anxiety , Treatment Outcome
3.
J Clin Psychol ; 78(11): 2109-2121, 2022 11.
Article in English | MEDLINE | ID: mdl-35975330

ABSTRACT

OBJECTIVES: To investigate the self-concept trajectory from before to 4 years after cognitive behavioral therapy (CBT) for youth with anxiety disorders, including predictors. METHODS: Youth with anxiety diagnoses (N = 179; M = 11.5 years, SD = 2.1; 53.6% girls; 46.4% boys) received CBT in community clinics. Self-concept, anxiety/depression symptoms, and diagnostic status were assessed at pre-, post, 1-year, and 4-year posttreatment. RESULTS: Growth curve analyses showed that the self-concept improved significantly over time (d = 0.07 to 0.34). Higher age and a decrease in the depressive symptom trajectory predicted increased self-concept trajectory from baseline to 4 years posttreatment. Not dropping out of treatment also contributed positively to the self-concept trajectory, but not above and beyond decreased depressive symptoms. The correlation between self-concept and depressive symptoms was r = 0.60, indicating these are related but distinct. CONCLUSION: Self-concept can improve after CBT, also long-term. This change appears to primarily be associated with decreased depressive symptoms over time.


Subject(s)
Cognitive Behavioral Therapy , Depression , Adolescent , Anxiety/therapy , Anxiety Disorders/psychology , Anxiety Disorders/therapy , Depression/psychology , Female , Humans , Male , Self Concept
4.
J Clin Child Adolesc Psychol ; 50(2): 229-242, 2021.
Article in English | MEDLINE | ID: mdl-31910051

ABSTRACT

OBJECTIVE: The alliance influences outcomes in CBT for youth anxiety disorders. Thus, knowledge about how therapists can enhance the alliance is needed. METHOD: Seventy-three youth with anxiety diagnoses (M age = 11.5 years, SD = 2.2; range 8 to 15 years; 47.9% boys; 90.4% white-European) participated in 10-session cognitive behavioral therapy in community clinics. Therapist alliance-building behaviors in session 2 was reliably coded with the observer-rated Adolescent Alliance-Building Behavior Scale (Revised) (AABS(R)). Alliance was measured as youth- and therapist-rated alliance, and youth-therapist alliance discrepancy in session 3. Outcomes were diagnostic recovery and anxiety symptom reduction at post-treatment and one-year follow-up, and treatment dropout. We examined the direct effects of alliance-building on alliance, alliance on outcomes, and alliance-building on outcomes in multilevel mediation models, and between- versus within-therapist variance across these effects. RESULTS: The alliance-building behaviors collaborate, present treatment model, and explore motivation positively predicted alliance, whereas actively structuring the session (i.e., dominating) negatively predicted alliance. The alliance-building behaviors attend to experience, collaborate, explore motivation, praise, and support positively predicted outcomes. The alliance-building behaviors present treatment model, express positive expectations, explore cognitions, and support negatively predicted outcomes. The effect of collaborate on symptom reduction was mediated by youth-therapist alliance discrepancy. There was almost zero between-therapist variance in alliance-building, and considerable within-therapist variance. CONCLUSION: Therapist alliance-building behaviors were directly (positively and negatively) associated with alliance and/or outcomes, with only one effect mediated by alliance. Alliance-building behaviors varied far more within therapists (i.e., across clients) than between therapists.


Subject(s)
Anxiety Disorders/therapy , Cognitive Behavioral Therapy , Therapeutic Alliance , Adolescent , Adult , Child , Cognition , Female , Humans , Male , Middle Aged , Treatment Outcome
5.
Yale J Biol Med ; 94(4): 537-544, 2021 12.
Article in English | MEDLINE | ID: mdl-34970091

ABSTRACT

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.


Subject(s)
Mental Disorders , Siblings , Child , Female , Humans , Male , Mental Health , Mothers , Psychosocial Functioning
6.
Am J Med Genet C Semin Med Genet ; 184(2): 482-492, 2020 06.
Article in English | MEDLINE | ID: mdl-32415904

ABSTRACT

A few studies have examined neuropsychological functions, sleep, and mental health combined in Klinefelter syndrome (KS; 47,XXY). We investigated neuropsychological functions with standard tests, sleep with actigraphy, and self-reported mental health in 30 men with KS (Mean age = 36.7 years) compared to 21 controls (Mean age = 36.8 years). Men with KS scored significantly lower on mental speed, attention span, working memory, inhibition, and set-shifting tests, as well as overall IQ (mean effect size difference Cohen's d = 0.79). Men with KS had significantly longer night wakes, with no differences in other sleep variables (mean d = 0.34). Men with KS reported poorer mental health than controls (mean d = 1.16). Regression analyses showed neuropsychological functions explained variance in some sleep domains for men with KS but not for controls. Neuropsychological functions explained variance in some mental health domains for controls. For men with KS, however, verbal IQ was the only significant predictor of mental health. Altogether, men with KS display problems in neuropsychological functions and mental health but do not appear different from controls on most sleep parameters. Our findings indicate that relations between neuropsychological functions, sleep, and mental health differ between men with KS and controls.


Subject(s)
Cognition Disorders/physiopathology , Klinefelter Syndrome/physiopathology , Mental Health , Sleep/physiology , Adult , Attention/physiology , Humans , Male , Middle Aged , Neuropsychological Tests
7.
Child Adolesc Ment Health ; 25(2): 102-109, 2020 05.
Article in English | MEDLINE | ID: mdl-32307836

ABSTRACT

BACKGROUND: The 'FRIENDS for life' program (FRIENDS) is a 10-session cognitive behavioral therapy (CBT) program used for prevention and treatment of youth anxiety. There is discussion about whether FRIENDS is best applied as prevention or as treatment. METHODS: We compared FRIENDS delivered in schools as targeted prevention to a previous specialist mental health clinic trial. The targeted prevention sample (N = 82; Mage  = 11.6 years, SD = 2.1; 75.0% girls) was identified and recruited by school nurses in collaboration with a community psychologist. The clinical sample (N = 88, Mage  = 11.7 years, SD = 2.1; 54.5% girls) was recruited for a randomized controlled trial from community child- and adolescent psychiatric outpatient clinics and was diagnosed with anxiety disorders. RESULTS: Both samples showed significantly reduced anxiety symptoms from baseline to postintervention, with medium mean effect sizes across raters (youths and parents) and timepoints (post; 12-months follow-up). Baseline youth-reported anxiety symptom levels were similar between the samples, whereas parent-reported youth anxiety was higher in the clinical sample. CONCLUSIONS: The study suggests that self-reported anxiety levels may not differ between youth recruited in schools and in clinic settings. The results indicate promising results of the FRIENDS program when delivered in schools by less specialized health personnel from the school health services, as well as when delivered in clinics by trained mental health professionals.


Subject(s)
Anxiety/prevention & control , Anxiety/therapy , Mental Health Services , School Health Services , Adolescent , Anxiety/diagnosis , Anxiety/epidemiology , Child , Cognitive Behavioral Therapy/methods , Female , Humans , Male
8.
Occup Med (Lond) ; 69(7): 504-510, 2019 Dec 07.
Article in English | MEDLINE | ID: mdl-31674646

ABSTRACT

BACKGROUND: Neurofibromatosis type 1 (NF1) is a rare genetic disorder with usually benign nerve tumours, skin problems, pain and cardiovascular problems among common complications. AIMS: To examine work participation and experiences in relation to health complaints among adults with NF1. METHODS: We conducted a cross-sectional self-reported survey among 142 persons with NF1 (mean age = 50.3 years, SD = 12.0; 62% females). We measured physical and social dimensions of work experiences with eight items from the third wave of the epidemiological survey 'Nord-Trøndelag Health Study' (HUNT3). We compared NF1 data to 27 036 HUNT3 controls. We measured health complaints with the 29-item Subjective Health Complaints Inventory (SHC; subscales musculoskeletal pain, pseudoneurology and gastrointestinal problems) and compared NF1 data to norms. RESULTS: Compared to controls, significantly more persons with NF1 reported workplace bullying (13% versus 5%) and work as physically exhausting (74% versus 44%), whereas fewer reported work autonomy (64% versus 80%). Women with NF1 reported significantly more SHC than female norms (99% versus 86%). Men with NF1 reported significantly more pseudoneurology and gastrointestinal problems compared to male norms (76% versus 58%). SHC explained 9% of the variance in physical work experiences (ß = -0.47; 95% CI -0.76 to -0.19) and 8% of the variance in social work experiences (ß = 0.48; 95% CI 0.18-0.78). CONCLUSION: Persons with NF1 experience more physical and social work problems, and both work domains were related to health complaints. Individualized assessment and information to co-workers and managers may represent ways to increase work participation among persons with NF1.


Subject(s)
Employment/statistics & numerical data , Neurofibromatosis 1/physiopathology , Neurofibromatosis 1/psychology , Adult , Aged , Aged, 80 and over , Bullying/statistics & numerical data , Cross-Sectional Studies , Female , Health Surveys , Humans , Male , Middle Aged , Norway/epidemiology , Quality of Life , Social Behavior , Workload
9.
J Child Psychol Psychiatry ; 59(7): 763-772, 2018 07.
Article in English | MEDLINE | ID: mdl-29520926

ABSTRACT

BACKGROUND: Several delivery formats of cognitive behaviour therapy (CBT) for child anxiety have been proposed, however, there is little consensus on the optimal delivery format. The primary goal of this study was to investigate the impact of the child's primary anxiety diagnosis on changes in clinical severity (of the primary problem) during individual CBT, group CBT and guided parent-led CBT. The secondary goal was to investigate the impact of the child's primary anxiety diagnosis on rates of remission for the three treatment formats. METHODS: A sample of 1,253 children (5-12 years; Mage = 9.3, SD = 1.7) was pooled from CBT trials carried out at 10 sites. Children had a primary diagnosis of generalised anxiety disorder (GAD), social anxiety disorder (SoAD), specific phobia (SP) or separation anxiety disorder (SAD). Children and parents completed a semistructured clinical interview to assess the presence and severity of DSM-IV psychiatric disorders at preintervention, postintervention and follow-up. Linear mixture modelling was used to evaluate the primary research question and logistic modelling was used to investigate the secondary research question. RESULTS: In children with primary GAD, SAD or SoAD, there were no significant differences between delivery formats. However, children with primary SP showed significantly larger reductions in clinical severity following individual CBT compared to group CBT and guided parent-led CBT. The results were mirrored in the analysis of remission responses with the exception that individual CBT was no longer superior to group CBT for children with a primary SP. The difference between individual and group was not significant when follow-up data were examined separately. CONCLUSIONS: Data show there may be greater clinical benefit by allocating children with a primary SP to individual CBT, although future research on cost-effectiveness is needed to determine whether the additional clinical benefits justify the additional resources required.


Subject(s)
Anxiety Disorders/therapy , Cognitive Behavioral Therapy/methods , Outcome and Process Assessment, Health Care , Parents , Psychotherapy, Group/methods , Anxiety, Separation/therapy , Child , Child, Preschool , Female , Humans , Male , Phobia, Social/therapy , Phobic Disorders/therapy , Remission Induction , Severity of Illness Index
10.
J Genet Couns ; 27(5): 1102-1110, 2018 09.
Article in English | MEDLINE | ID: mdl-29429039

ABSTRACT

Neurofibromatosis type 1 (NF1) is a genetic, autosomal dominant multi-organ disease characterized by susceptibility to tumor formation, changes in skin pigmentation, skeletal abnormalities, and neuropsychological deficits. Clinical studies have shown impaired health-related quality of life (HQoL) in adults with NF1. However, little is known about HQoL in non-clinical NF1 samples. We conducted a cross-sectional self-report survey of 142 persons with NF1 (M age = 50.3 years, SD = 12.0, range 32 to 80; 62.0% females) recruited from non-clinical settings. Several HQoL domains, including life satisfaction, mental health, sleep, pain, gastrointestinal problems, oral health, and social support, were compared between the NF1 sample and 46,293 controls from the HUNT3 population study. We also examined gender differences within the NF1 sample and predictors of HQoL. Compared to controls, the NF1 sample reported significantly poorer life satisfaction, mental health, sleep, and oral health, and more pain, gastrointestinal problems, comorbid diseases, and memory problems. Several HQoL domains were significantly correlated. Mental health was the only unique significant predictor of overall life satisfaction. Women with NF1 reported significantly more mental health, sleep, and pain problems than men with NF1. Mental health assessment and management should be integrated into clinical care of persons with NF1 to potentially improve their HQoL.


Subject(s)
Health Surveys , Neurofibromatosis 1/physiopathology , Neurofibromatosis 1/psychology , Adult , Aged , Aged, 80 and over , Case-Control Studies , Cross-Sectional Studies , Female , Humans , Interpersonal Relations , Male , Middle Aged , Quality of Life/psychology , Self Report , Social Behavior , Social Support , Surveys and Questionnaires
11.
J Couns Psychol ; 65(2): 166-177, 2018 Mar.
Article in English | MEDLINE | ID: mdl-29543473

ABSTRACT

Posttraumatic stress symptoms (PTSS) are associated with serious impairments in psychological, social, and academic functioning in youth. The aim of this study was to investigate whether changes in posttraumatic cognitions mediate treatment effects. Participants were multitraumatized youth (N = 156, mean age = 15.1 years, range = 10-18; 79.5% girls) randomly assigned to receive trauma-focused cognitive-behavioral therapy (TF-CBT) or treatment-as-usual (TAU). Mixed-effects models were applied to investigate the impact of treatment conditions on posttraumatic cognitions. Mediation analyses were applied to examine whether changes in posttraumatic cognitions mediated the relationship between treatment conditions and outcome in posttraumatic stress symptoms, depressive symptoms, and general mental health. Participants receiving TF-CBT reported significantly lower levels of negative posttraumatic cognitions at the end of treatment compared to participants in TAU. Change in posttraumatic cognitions mediated the treatment effect difference found for PTSS. When the overall change in cognition was divided into early and late changes, it was only the late change that significantly mediated the PTSS treatment effect. A mediation effect of posttraumatic cognitions was also found for the treatment effect difference in depressive symptoms and in general mental health symptoms. Traumatized youth report having many negative posttraumatic cognitions and changes in negative cognitions plays a key role for treatment outcome. (PsycINFO Database Record


Subject(s)
Cognition , Cognitive Behavioral Therapy/methods , Psychological Trauma/psychology , Psychological Trauma/therapy , Stress Disorders, Post-Traumatic/psychology , Stress Disorders, Post-Traumatic/therapy , Adolescent , Child , Cognition/physiology , Cognitive Behavioral Therapy/trends , Community Health Centers/trends , Female , Humans , Male , Mental Health , Treatment Outcome
12.
Behav Med ; 44(2): 116-122, 2018.
Article in English | MEDLINE | ID: mdl-28632005

ABSTRACT

More knowledge is needed about men with sex chromosome aneuploidies (SCA). We present self-reported data from 53 men with SCA (Mage = 36.8 years, SD = 12.3, range 19-67). The Health Survey-Short Form (SF-36) measured eight health domains (physical functioning, role-physical, role-emotional, vitality, emotional health, social functioning, pain, general health). The Pittsburgh Sleep Quality Index measured sleep problems. The Personal Wellbeing Index measured satisfaction with eight life domains. Compared to norms, SCA reported poorer health (mean d = -0.80) and more sleep problems (mean d = -0.85). Differences between SCA and norms on personal well-being were small, except lower health satisfaction in SCA (d = -1.06). Seven of eight regression models predicting the SF-36 domains from life satisfaction and sleep problems were significant (explained variance 12.2% to 46.2%), except physical functioning (ns). Clinical assessment/intervention for a broad range of health and sleep problems is indicated for men with SCA.


Subject(s)
Aneuploidy , Personal Satisfaction , Sex Chromosomes/genetics , Sleep Initiation and Maintenance Disorders/genetics , Adult , Aged , Case-Control Studies , Health Surveys , Humans , Male , Middle Aged , Regression Analysis , Young Adult
13.
Clin Endocrinol (Oxf) ; 85(3): 423-9, 2016 09.
Article in English | MEDLINE | ID: mdl-27004718

ABSTRACT

OBJECTIVE: Studies suggest younger women with Turner syndrome (TS) have good quality of life. Less is known about everyday functioning in adults with TS. In a 6-year follow-up study, multiple areas of functioning were compared between TS women and controls. DESIGN: Women with TS and controls were mailed a self-report survey 6 years after a baseline study. PATIENTS: Fifty-seven women with TS (M age 40·6 ± 11·1 years) and 101 controls (M age 38·8 ± 10·6 years, ns) responded. MEASUREMENTS: Measures of background information, experienced life strain and presence/impact of health conditions were developed for this study. The QPS Nordic measured perceived workload challenges. The LiSat-9 measured life satisfaction. The Rosenberg Self-Esteem Scale measured self-esteem. RESULTS: More TS women lived alone, fewer had biological children, and more had adoptive children. TS women reported fewer sex partners and less sexual confidence. Controls had higher education. There was no difference in employment status. More TS women received disability pensions. TS women reported their work as more physically challenging, less positively challenging and requiring less knowledge skills. TS women experienced more life strain in school, adolescence and late working life. Controls reported higher overall life satisfaction, with no difference between samples on specific domains. TS women reported lower self-esteem. For TS women only, physical health at baseline predicted length of education and mental health at baseline predicted self-esteem. CONCLUSIONS: Women with TS face more challenges than controls on several domains of functioning. Early physical and mental health may influence later educational achievement and self-esteem for women with TS.


Subject(s)
Health Status , Turner Syndrome/psychology , Adult , Case-Control Studies , Educational Status , Employment , Female , Follow-Up Studies , Humans , Middle Aged , Self Concept , Self Report , Surveys and Questionnaires
14.
J Child Psychol Psychiatry ; 57(5): 625-32, 2016 May.
Article in English | MEDLINE | ID: mdl-26647901

ABSTRACT

BACKGROUND: In individual cognitive behavioral therapy (ICBT) for youth anxiety disorders, it is unclear whether, and from whose perspective, the alliance predicts outcome. We examined whether youth- and therapist-rated alliance, including level of youth-therapist alliance agreement, predicted outcome in a randomized controlled trial. METHODS: Youth (N = 91, M age = 11.4 years (SD = 2.1), 49.5% boys, 86.8% Caucasian) diagnosed with separation anxiety disorder, social phobia, or generalized anxiety disorder drawn from the ICBT condition of an effectiveness trial were treated with an ICBT program. Youth- and therapist-rated alliance ratings, assessed with the Therapeutic Alliance Scale for Children (TASC-C/T), were collected following session 3 (early) and 7 (late). Early alliance, change in alliance from early to late, and level of youth-therapist agreement on early alliance and alliance change were examined, in relation to outcomes collected at posttreatment and 1-year follow-up. Outcome was defined as primary diagnosis loss and reduction in clinicians' severity ratings (CSR; Anxiety Disorders Interview Schedule; ADIS-C/P) based on youth- and parent-report at posttreatment and follow-up, and youth treatment satisfaction collected at posttreatment (Client Satisfaction Scale; CSS). RESULTS: Early TASC-C scores positively predicted treatment satisfaction at posttreatment. Higher levels of agreement on change in TASC-C and TASC-T scores early to late in treatment predicted diagnosis loss and CSR reduction at follow-up. CONCLUSIONS: Only the level of agreement in alliance change predicted follow-up outcomes in ICBT for youth anxiety disorders. The findings support further examination of the role that youth-therapist alliance discrepancies may play in promoting positive outcomes in ICBT for youth anxiety disorders. Clinical trial number NCT00586586, clinicaltrials.gov.


Subject(s)
Anxiety Disorders/therapy , Cognitive Behavioral Therapy/methods , Outcome and Process Assessment, Health Care , Professional-Patient Relations , Adolescent , Anxiety, Separation/therapy , Child , Female , Humans , Male , Patient Satisfaction , Phobia, Social/therapy
15.
J Pediatr Psychol ; 40(7): 712-20, 2015 Aug.
Article in English | MEDLINE | ID: mdl-25817880

ABSTRACT

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.


Subject(s)
Adaptation, Psychological/physiology , Emotions/physiology , Health Knowledge, Attitudes, Practice , Rare Diseases/psychology , Siblings/psychology , Adolescent , Child , Female , Humans , Male , Qualitative Research , Sibling Relations
16.
Children (Basel) ; 11(5)2024 May 08.
Article in English | MEDLINE | ID: mdl-38790555

ABSTRACT

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.

17.
Article in English | MEDLINE | ID: mdl-38869750

ABSTRACT

The temperamental trait behavioral inhibition (BI) is related to the development and maintenance of anxiety, particularly much so to social anxiety disorder. We investigated if BI and social anxiety disorder predicted cognitive behavioral therapy (CBT) outcomes for youth anxiety. Youth (N = 179; Mage = 11.6 years) were assessed 4 years following a randomized controlled CBT effectiveness trial. BI was measured by the parent-reported Behavioral Inhibition Questionnaire at baseline. The outcomes were diagnostic recovery, youth- and parent-reported anxiety symptoms, and clinical severity at post-treatment, 1-year, and 4-year follow-up. Having social anxiety disorder negatively predicted diagnostic recovery and predicted higher clinical severity at all assessment points and was the only significant predictor of outcomes at 4-year follow-up. Higher BI negatively predicted diagnostic recovery and predicted higher clinical severity and parent-reported symptom levels at post-treatment and 1-year follow-up, and predicted higher youth-reported anxiety levels at 1-year follow-up. Higher BI was the only predictor of youth- and parent-reported anxiety symptoms. BI and social anxiety disorder seem to be unique predictors of CBT outcomes among youth with anxiety disorders. CBT adaptations may be indicated for youth with high BI and social anxiety disorder.

18.
Article in English | MEDLINE | ID: mdl-38878114

ABSTRACT

Long-term data on depression symptoms after cognitive behavioral therapy (CBT) for youth anxiety disorders are scant. We examined depression symptoms up to four years post CBT for anxiety addressing youth age and gender, family social class, and parent mental health as predictors. The sample comprised 179 youth (M age at pre-treatment = 11.5 years; SD = 2.1) in a randomized controlled trial. Clinically assessed anxiety diagnoses and youth and parent-reported anxiety and depression symptoms were measured before, after, and one and four years after CBT. Parent self-reported mental health was measured before CBT. We used regression analyses to determine whether full diagnostic recovery at post-CBT predicted depression trajectories across the four-year assessment period. We used growth curve models to determine whether anxiety trajectories predicted depression trajectories across the four-year assessment period. Youth who lost their anxiety diagnoses after CBT had significantly lower parent-reported depression levels over time, but not lower youth self-reported depression levels. The anxiety symptom trajectory predicted the depression symptom trajectory up to four years post-treatment. There was more explained variance for within-informant (youth-youth; parent-parent) than cross-informants. Being older, female, having lower socio-economic status and parents with poorer mental health were associated with more youth-rated depression over time. However, these demographic predictors were not significant when anxiety symptoms trajectories were added to the models. Successful CBT for anxiety in children is associated with less depression symptoms for as long as four years. Anxiety symptom improvement appears to be a stronger predictor that demographic variables and parent mental health.

19.
PEC Innov ; 4: 100277, 2024 Dec.
Article in English | MEDLINE | ID: mdl-38590338

ABSTRACT

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.

20.
PEC Innov ; 3: 100220, 2023 Dec 15.
Article in English | MEDLINE | ID: mdl-37811193

ABSTRACT

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.

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