Jour

Background: The primary caregiver is an important person in the life of patients with JIA. Their reactions depend on social, emotional and economic factors that affect the therapeutic alliance. Some generic instruments have been used to evaluate burden, anxiety, or quality of life of caregivers. This study aims to develop a specific instrument to measure the psychosocial and economic impacts on primary caregivers of patients with JIA.

Background: Children with chronic kidney disease require specialist renal paediatric dietetic care, regardless of disease severity or geographical location; however, under‐resourcing makes this challenging. Videoconsultation may offer a solution but research exploring its acceptability is limited. The present study explored parent/carer and child perspectives of videoconsultation as an alternative or supplement to existing regional dietetic care.

Background: The role of cystic fibrosis (CF) care team members in delivering palliative care (PC) remains undefined. We aimed to understand the PC skills of CF care teams.

Methods: CF care team members ("clinicians"), adults with CF ("patients"), and family caregivers ("caregivers") rated the ability of CF clinicians to provide aspects of PC using a five-point scale ("poor" to "excellent"). Median ratings were compared between groups.

The experiences of Tourette syndrome (TS) caregivers with supportive communication are examined in this qualitative investigation. TS is a childhood-onset neurodevelopmental disorder marked by a combination of involuntary verbal and motor tics lasting for more than 1 year. Although individuals are impacted the most by TS, the stress for caring for a child with TS takes an emotional and physical toll on the caregiver. Eleven participants shared their experiences with receiving supportive communication by taking part in semi-structured interviews.

Interventions for main carers of adult patients with anorexia nervosa (AN) can reduce the caregiving burden and increase caregiver skills. However, the effectiveness and feasibility for carers of adolescent patients, the optimal form of the intervention and long-term outcomes are largely unknown. We evaluated the efficacy and feasibility of the "Supporting Carers of Children and Adolescents with Eating Disorders in Austria" (SUCCEAT) workshop vs. online intervention.

Teaching parents to conduct functional analyses and to implement functional communication training is an efficacious approach for treating socially maintained problem behavior (Derby et al., 1997). Research has found that delivering this assessment and intervention package via telehealth technologies is efficient and acceptable to caregivers in the United States (Wacker et al., 2013b). We replicated this work with families residing in rural and urban areas of eight countries.

Background: Parents are confronted with a range of direct costs and intense caregiving demands following their child's cancer diagnosis, which may potentially threaten the financial stability of the family. Objective The aims of this study were to explore the financial impact of a new childhood cancer diagnosis on families and understand the strategies families use to manage these financial impacts.

Background: Patients with childhood cancer and their families frequently experience psychosocial distress associated with cancer and its treatment. We thus examined the reliability and validity of a Japanese version of the Psychosocial Assessment Tool, which was designed to screen for psychosocial risk factors among families of children with cancer.

The literature on how autism spectrum disorders ( ASD) impact the family unit primarily focuses on the negative experiences of parents and neurotypical ( NT) siblings. This unintentional focus may impact the therapist's ability to identify strengths within the family unit and further perpetuate the misconception that ASD is only a 'problem.' This paper reviews NT siblings' experiences of living with an ASD sibling. A solution-focused brief therapy framework is used in order to alter the covert message that an ASD diagnosis is a 'problem' for the families.

It is important to engage children with ASD and the families that support them in research. However, it is often challenging for researchers to engage this population in time- and/or labor-intensive research due to the many barriers caregivers of children with ASD face. From a researcher's perspective, this challenge ultimately inhibits research designs and compromises the learning and understanding needed to identify meaningful research questions, solve relevant problems, and implement solutions into practice.