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1.
Children (Basel) ; 11(5)2024 May 08.
Artículo en Inglés | MEDLINE | ID: mdl-38790555

RESUMEN

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.

2.
PEC Innov ; 4: 100277, 2024 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-38590338

RESUMEN

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.

3.
J Pediatr Nurs ; 76: 91-98, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38367476

RESUMEN

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.


Asunto(s)
Relaciones Padres-Hijo , Hermanos , Humanos , Femenino , Masculino , Niño , Adolescente , Enfermedad Crónica , Hermanos/psicología , Padres/psicología , Investigación Cualitativa , Adaptación Psicológica , Relaciones entre Hermanos , Adulto
4.
PEC Innov ; 3: 100220, 2023 Dec 15.
Artículo en Inglés | MEDLINE | ID: mdl-37811193

RESUMEN

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.

5.
Behav Res Ther ; 169: 104400, 2023 10.
Artículo en Inglés | MEDLINE | ID: mdl-37690362

RESUMEN

Meta-analyses of school-based CBT have shown that prevention for anxiety symptoms typically report small but significant effects. There is limited knowledge regarding which youths may benefit most and least from such programs, and characteristics of youth who respond differentially to interventions of different intensity. The present study examined predictors of school-based CBT outcomes among 302 youths (mean age 14.0 years, SD 0.8, 84% female) who participated in a randomized waitlist-controlled trial comparing a 10-session and a 5-session group intervention. Potential predictors included youth and parental factors, and credibility and expectancy of the interventions. Pre-intervention anxiety and depression levels, and clinician rated severity were examined as moderators of intervention effects. Outcomes were youth-, and parent-reported youth anxiety and depressive symptoms at post-intervention and 1-year follow-up. Higher parent-reported impairment from youth anxiety predicted larger parent-reported anxiety and depressive symptom change, whereas higher caregiver strain was associated with less symptom change. Higher parent rated credibility and expectancy was associated with improved outcomes at post-intervention. At 1-year follow-up, no predictors of outcome were identified. No moderators were identified. Families with high levels of caregiver strain associated with youth anxiety may need extra support regardless of length of intervention program. Parents' credibility and expectancy of interventions should be targeted to optimize school-based CBT.


Asunto(s)
Trastornos de Ansiedad , Terapia Cognitivo-Conductual , Adolescente , Humanos , Femenino , Masculino , Trastornos de Ansiedad/terapia , Trastornos de Ansiedad/psicología , Ansiedad/terapia , Ansiedad/psicología , Padres/psicología
6.
J Clin Psychol ; 79(8): 1726-1739, 2023 08.
Artículo en Inglés | MEDLINE | ID: mdl-36799300

RESUMEN

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.


Asunto(s)
Relaciones Profesional-Paciente , Cohesión Social , Adulto , Niño , Humanos , Adolescente , Psicometría , Trastornos de Ansiedad/terapia , Trastornos de Ansiedad/psicología , Ansiedad , Resultado del Tratamiento
7.
J Clin Psychol ; 78(11): 2109-2121, 2022 11.
Artículo en Inglés | MEDLINE | ID: mdl-35975330

RESUMEN

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.


Asunto(s)
Terapia Cognitivo-Conductual , Depresión , Adolescente , Ansiedad/terapia , Trastornos de Ansiedad/psicología , Trastornos de Ansiedad/terapia , Depresión/psicología , Femenino , Humanos , Masculino , Autoimagen
8.
Res Dev Disabil ; 126: 104234, 2022 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-35468570

RESUMEN

BACKGROUND: Social support is a protective factor for siblings of children with neurodevelopmental disorders. AIMS: We reviewed studies on social support received by siblings of children with neurodevelopmental disorders. METHODS AND PROCEDURES: We conducted a pre-registered systematic review (CRD42020207686), searching PsycINFO, MEDLINE, Web of Science, and Scopus. OUTCOMES AND RESULTS: Fifteen articles were eligible for the review, 13 of which used cross-sectional designs. Two studies investigated sibling social support after an intervention. Multiple variables were negatively related to social support (e.g., sibling depression, loneliness, stress). Variables that were positively related to social support included prosocial behavior, competence (academic, social, and activity-related), problem-focused coping, and family quality of life. Potential moderators of the relationship between social support and psychosocial adjustment included the type of disorder of the affected sibling and the type of social support provider. We conclude with an overview of the reliability and validity of the seven social support measurements used across the studies. CONCLUSIONS AND IMPLICATIONS: Lower levels of social support are associated with more negative psychosocial adjustment among siblings of children with neurodevelopmental disorders. We encourage future researchers to further investigate ways to increase social support for siblings to improve outcomes.


Asunto(s)
Trastornos del Neurodesarrollo , Hermanos , Adaptación Psicológica , Niño , Estudios Transversales , Humanos , Calidad de Vida/psicología , Reproducibilidad de los Resultados , Hermanos/psicología , Apoyo Social
9.
Res Dev Disabil ; 123: 104181, 2022 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-35114595

RESUMEN

BACKGROUND: For adults with rare disorders, COVID-19 can be more severe and deadlier. This may lead to anxiety about COVID-19 among adults with rare disorders, including worries about being infected. COVID-19 anxiety is linked with mental health problems in the general population. AIMS: To examine the levels of mental health problems and COVID-19 anxiety, and their association, among adults with rare disorders. METHODS AND PROCEDURES: Adults with rare disorders (N = 58, Mage = 45.2 years, SD = 12.7, 69.0 % females, 31.0 % males) answered standardized mental health and COVID-19 anxiety questionnaires online. Their scores were compared with samples without rare disorders. OUTCOMES AND RESULTS: Mental health problems were higher than in a sample without rare disorders (effect size d = 1.14), as was COVID-19 anxiety (effect size d = 0.53). COVID-19 anxiety correlated significantly with mental health problems (r = 0.46). Controlling for age, gender, and work status, COVID-19 anxiety explained 16.1 % of the variance in mental health problems (ΔR2 = 0.161, p = 0.001). CONCLUSIONS AND IMPLICATIONS: COVID-19 anxiety is higher than norms and associated with mental health problems for adults with rare disorders. During the pandemic, clinicians are recommended to assess COVID-19 anxiety for patients with rare disorders.


Asunto(s)
COVID-19 , Salud Mental , Adulto , Ansiedad/epidemiología , Ansiedad/psicología , COVID-19/epidemiología , Depresión/psicología , Femenino , Humanos , Masculino , Persona de Mediana Edad , SARS-CoV-2
10.
Yale J Biol Med ; 94(4): 537-544, 2021 12.
Artículo en Inglés | MEDLINE | ID: mdl-34970091

RESUMEN

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.


Asunto(s)
Trastornos Mentales , Hermanos , Niño , Femenino , Humanos , Masculino , Salud Mental , Madres , Funcionamiento Psicosocial
11.
J Clin Child Adolesc Psychol ; 50(2): 229-242, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-31910051

RESUMEN

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.


Asunto(s)
Trastornos de Ansiedad/terapia , Terapia Cognitivo-Conductual , Alianza Terapéutica , Adolescente , Adulto , Niño , Cognición , Femenino , Humanos , Masculino , Persona de Mediana Edad , Resultado del Tratamiento
12.
Trials ; 21(1): 851, 2020 Oct 14.
Artículo en Inglés | MEDLINE | ID: mdl-33054825

RESUMEN

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.


Asunto(s)
Calidad de Vida , Hermanos , Niño , Humanos , Noruega , Relaciones Padres-Hijo , Padres , Ensayos Clínicos Controlados Aleatorios como Asunto
13.
Mol Genet Genomic Med ; 8(10): e1399, 2020 10.
Artículo en Inglés | MEDLINE | ID: mdl-32924306

RESUMEN

BACKGROUND: Persons with rare disorders may experience poorer health services due to limited knowledge about rare disorders among health professionals. Knowledge about how persons with rare disorders perceive health services can help inform service providers to enhance their practices. METHODS: We conducted a self-report survey among adults with the rare disorders hereditary spastic paraparesis (HSP; n = 108; mean age 57.7 years; 54.2% females) and neurofibromatosis type 1 (NF1, n = 142; mean age = 50.3 years; 62.0% females). Their responses concerning perceived health experiences were compared to healthy controls from the population study HUNT-3 (n = 7,312). RESULTS: Both rare disorder groups reported lower satisfaction, trust, and participation in meetings with their general practitioner and specialist health services. More reported health problems were overall associated with poorer health service experiences. CONCLUSION: There is a need to identify predictors of health service experiences at the patient and health service provider levels with the aim to tighten the gap between the health experiences of patients with and without rare disorders.


Asunto(s)
Neurofibromatosis 1/psicología , Satisfacción del Paciente , Paraplejía Espástica Hereditaria/psicología , Adulto , Femenino , Humanos , Masculino , Neurofibromatosis 1/diagnóstico , Neurofibromatosis 1/terapia , Pacientes/psicología , Paraplejía Espástica Hereditaria/diagnóstico , Paraplejía Espástica Hereditaria/terapia
14.
Am J Med Genet C Semin Med Genet ; 184(2): 482-492, 2020 06.
Artículo en Inglés | MEDLINE | ID: mdl-32415904

RESUMEN

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.


Asunto(s)
Trastornos del Conocimiento/fisiopatología , Síndrome de Klinefelter/fisiopatología , Salud Mental , Sueño/fisiología , Adulto , Atención/fisiología , Humanos , Masculino , Persona de Mediana Edad , Pruebas Neuropsicológicas
15.
Child Adolesc Ment Health ; 25(2): 102-109, 2020 05.
Artículo en Inglés | MEDLINE | ID: mdl-32307836

RESUMEN

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.


Asunto(s)
Ansiedad/prevención & control , Ansiedad/terapia , Servicios de Salud Mental , Servicios de Salud Escolar , Adolescente , Ansiedad/diagnóstico , Ansiedad/epidemiología , Niño , Terapia Cognitivo-Conductual/métodos , Femenino , Humanos , Masculino
16.
Occup Med (Lond) ; 69(7): 504-510, 2019 Dec 07.
Artículo en Inglés | MEDLINE | ID: mdl-31674646

RESUMEN

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.


Asunto(s)
Empleo/estadística & datos numéricos , Neurofibromatosis 1/fisiopatología , Neurofibromatosis 1/psicología , Adulto , Anciano , Anciano de 80 o más Años , Acoso Escolar/estadística & datos numéricos , Estudios Transversales , Femenino , Encuestas Epidemiológicas , Humanos , Masculino , Persona de Mediana Edad , Noruega/epidemiología , Calidad de Vida , Conducta Social , Carga de Trabajo
17.
J Anxiety Disord ; 59: 53-63, 2018 10.
Artículo en Inglés | MEDLINE | ID: mdl-30273789

RESUMEN

Cognitive behavioral therapy (CBT) has proven long-term effects in youth with anxiety disorders. However, only a few studies have examined predictors of long-term outcomes of CBT treatment. The present study investigated possible predictors of long-term treatment outcomes in youth with mixed anxiety disorders treated in community mental health clinics. A total of 139 youth (mean age at assessment 15.5 years, range 11-21 years) with a principal diagnosis of separation anxiety disorder, social anxiety disorder, and/or generalized anxiety disorder were evaluated a mean of 3.9 years post-treatment (range 2.2-5.9 years). Outcomes were loss of all inclusion anxiety diagnoses, loss of the principal inclusion anxiety diagnosis, and changes in youth- and parent-rated youth anxiety symptoms. Predictors encompassed youth, parent and demographic factors, and post-treatment recovery. The most consistent finding was that low family social class predicted poorer outcomes. Higher treatment motivation was associated with better outcome whereas a diagnosis of social anxiety was associated with poorer outcome. Identified predictors extend on previous findings from efficacy trials, and the results indicate a need for more specific treatment protocols.


Asunto(s)
Instituciones de Atención Ambulatoria , Trastornos de Ansiedad/psicología , Trastornos de Ansiedad/terapia , Terapia Cognitivo-Conductual , Cuidados a Largo Plazo , Adolescente , Ansiedad/psicología , Ansiedad/terapia , Trastornos de Ansiedad/diagnóstico , Ansiedad de Separación/psicología , Ansiedad de Separación/terapia , Niño , Femenino , Estudios de Seguimiento , Conductas Relacionadas con la Salud , Humanos , Masculino , Padres/psicología , Fobia Social/psicología , Fobia Social/terapia , Pronóstico , Clase Social , Resultado del Tratamiento , Adulto Joven
18.
Orphanet J Rare Dis ; 13(1): 58, 2018 04 16.
Artículo en Inglés | MEDLINE | ID: mdl-29661209

RESUMEN

BACKGROUND: Hereditary spastic paraparesis (HSP) is a group of rare genetic disorders affecting the central nervous system. Pure HSP is limited to lower limb spasticity and urinary voiding dysfunction. Complex HSP involves additional neurological features. Beyond the described core symptoms, knowledge about the burden of disease for adults with HSP is limited, particularly regarding gastrointestinal functions, fecal incontinence, and urinary symptoms. METHODS: We conducted a cross-sectional self-report survey with 108 adult HSP patients (Mage = 57.7 years, SD = 11.5, range 30 to 81; 54.2% females) recruited from a national HSP user group association and a national (non-clinical) advisory unit for rare disorders. HSP data was compared to data from a Norwegian population study, HUNT-3 (N = 46,293). RESULTS: The HSP group reported more gastrointestinal and urinary complaints compared to controls. Gastrointestinal complaints included at least "much" complaints with constipation (14.6%) and alternating constipation/diarrhea (8.0%), and at least daily uncontrollable flatulence (47.6%), fecal incontinence (11.6%), and inability to hold back stools (38.5%). Urinary complaints included frequent urination (27.4% > 8 times daily), sudden urge (51.9%) and urinary incontinence (30.5% at least daily/nightly). CONCLUSION: This survey of adults with HSP recruited from non-clinical settings showed constipation, alternate constipation and diarrhea, fecal incontinence, and voiding dysfunction represent considerable problems for many persons with HSP. Health care providers should screen and manage often unrecognized gastrointestinal and fecal incontinence complaints among HSP patients.


Asunto(s)
Incontinencia Fecal/fisiopatología , Tracto Gastrointestinal/fisiología , Paraplejía Espástica Hereditaria/fisiopatología , Incontinencia Urinaria de Urgencia/fisiopatología , Incontinencia Urinaria/fisiopatología , Adulto , Anciano , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad
19.
J Child Psychol Psychiatry ; 59(7): 763-772, 2018 07.
Artículo en Inglés | MEDLINE | ID: mdl-29520926

RESUMEN

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.


Asunto(s)
Trastornos de Ansiedad/terapia , Terapia Cognitivo-Conductual/métodos , Evaluación de Procesos y Resultados en Atención de Salud , Padres , Psicoterapia de Grupo/métodos , Ansiedad de Separación/terapia , Niño , Preescolar , Femenino , Humanos , Masculino , Fobia Social/terapia , Trastornos Fóbicos/terapia , Inducción de Remisión , Índice de Severidad de la Enfermedad
20.
J Couns Psychol ; 65(2): 166-177, 2018 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-29543473

RESUMEN

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


Asunto(s)
Cognición , Terapia Cognitivo-Conductual/métodos , Trauma Psicológico/psicología , Trauma Psicológico/terapia , Trastornos por Estrés Postraumático/psicología , Trastornos por Estrés Postraumático/terapia , Adolescente , Niño , Cognición/fisiología , Terapia Cognitivo-Conductual/tendencias , Centros Comunitarios de Salud/tendencias , Femenino , Humanos , Masculino , Salud Mental , Resultado del Tratamiento
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