The Caregiver Pathway Intervention Can Contribute to Reduced Post-Intensive Care Syndrome Among Family Caregivers of ICU Survivors: A Randomized Controlled Trial.

Objectives: Explore short-term effects of "The Caregiver Pathway," an intervention for family caregiver follow-up, on Post-Intensive Care Syndrome symptoms among families (PICS-F).

Design: A randomized controlled trial.

Setting: A medical ICU at a Norwegian University Hospital.

Mental health in mothers and fathers of children with chronic disorders.

Objective: This study applied the Family Systems Illness Model to examine how child disorder severity influences mental health in mothers and fathers of children with chronic (mainly developmental) disorders (CD).

Methods: We measured parental mental health and perceived child disorder severity among 204 mothers and 125 fathers of 220 children with CD and compared the mental health scores with norms. We analyzed how much of the variance in parental mental health was explained by child disorder severity, including discrepancy between maternally and paternally perceived severity.

A scoping review of health literacy in rare disorders: key issues and research directions.

Background: The ability to find, understand, appraise and utilise health information is crucial among individuals living with rare disorders. The aim of this study was to give a comprehensive overview of the literature on health literacy in adult persons with rare disorders.

Methods: We applied a scoping review methodology and performed a systematic search in 2021 in bibliographic databases.

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.

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.

Enabling primary healthcare service development with patient participation: a qualitative study of the internal facilitator role in Norway.

Aim: To explore how primary healthcare professionals (HCPs) tasked with facilitating primary healthcare service development with patient participation perceived their role.

Introduction: Patient participation in health service development is a recognized means of ensuring that health services fit the public's needs. However, HCPs are often uncertain about how to involve patient representatives (PRs), and patient participation is poorly implemented.

The Caregiver Pathway, a Model for the Systematic and Individualized Follow-up of Family Caregivers at Intensive Care Units: Development Study.

Background: Family caregivers of patients who are critically ill have a high prevalence of short- and long-term symptoms, such as fatigue, anxiety, depression, symptoms of posttraumatic stress, and complicated grief. These adverse consequences following a loved one's admission to an intensive care unit (ICU) are also known as post-intensive care syndrome-family. Approaches such as family-centered care provide recommendations for improving the care of patients and families, but models for family caregiver follow-up are often lacking.

Short report: COVID-19-related anxiety is associated with mental health problems among adults with rare disorders.

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.

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.

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

: 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.: To investigate the factor structure and convergent validity of the NAS.

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.

Temple syndrome as a differential diagnosis to Prader-Willi syndrome: Identifying three new patients.

The two imprinting syndromes Temple syndrome (TS14) and Prader-Willi syndrome (PWS) share many features in infancy and childhood. TS14 is an important, yet often neglected, differential diagnosis to PWS. We wanted to assess the frequency of TS14 among patients tested for PWS.

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.

Phonological patterns (templates) in 5p deletion syndrome.

Whole word phonological patterns (templates) in utterances produced by children with 5p deletion syndrome are analysed, addressing four questions: (1) Are children with 5p deletion syndrome able to generalise over words? (2) How does the template score of children with 5p deletion syndrome relate to those of typically developing children and of the target language? (3) How do the template scores relate to other phonological measures, PCC and consonant variegation? (4) What can the relationship between template scores and phonological measures tell us about templates? Children with 5p deletion syndrome are able to generalise over words, some to a target like extent, others generalise more than expected for their age. The template scores relate to other phonological measures, with two exceptions. The exceptions indicate that the template score of a child with articulatory difficulties may reflect more detailed representations of the words in memory than she is able to express.

A 6-year Follow-up survey of health status in middle-aged women with Turner syndrome.

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.

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.