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Validity and reliability of the Mexican resilience measurement scale in families of children with chronic conditions

Background: The resilience to face disease is a process of positive adaptation despite the loss of health. It involves developing vitality and skills to overcome the negative effects of adversity, risks, and vulnerability caused by disease. In Mexico, the Mexican Resilience Measurement Scale (RESI-M) has been validated with a general population and has a five-factor structure. However, this scale does not allow evaluation of resilience in specific subpopulations, such as caregivers.

Tue, 12/20/2022 - 13:14

Parental Stress as a Child With Diabetes Transitions From Adolescence to Emerging Adulthood

This study examined parental and caregiver distress among families caring for children with type 1 diabetes as the child transitions into Emerging Adulthood. More than 96 hours of semistructured interviews were conducted with 19 adult caregivers including parents, grandparents, and other adult family members of 10 children. Each research partner participated in multiple face-to-face, 1- to 1.5-hour long-evolving interviews over the course of 4.5 years.

Tue, 12/20/2022 - 13:09

Trends in the provision of residential educational placements available for young people with learning disabilities/autism in England

Purpose: Little is known about the characteristics of residential educational settings for young people with intellectual or developmental disabilities (IDD) in England. Previous research has focussed on the characteristics and experiences of the young people attending such settings rather than the setting itself; therefore, an overview of national provision is needed. The paper aims to discuss these issues.

Tue, 12/20/2022 - 13:06

Assessment of skills using a spacer device for a metered-dose inhaler and related independent predictive factors in caregivers of asthmatic preschool children

Background: The correct use of inhalation devices is essential for successful therapy. We aimed to evaluate the skills in the use of a spacer device with an metered-dose inhaler (MDI) and factors that influence this skill in asthmatic preschool children's caregivers. 

Methods: The caregivers of 12-month-old to 72-month-old children were interviewed face-to-face and filled out questionnaires. To assess use of the spacer device, we asked the caregivers to verbally describe and demonstrate how they used the device.

Tue, 12/20/2022 - 13:01

Development and validation of the CAREGIVERS questionnaire: multi-assessing the impact of juvenile idiopathic arthritis on caregivers

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.

Tue, 12/20/2022 - 12:58

Using videoconsultations to deliver dietary advice to children with chronic kidney disease: a qualitative study of parent and child perspectives

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.

Tue, 12/20/2022 - 12:53

Palliative care skills in CF: Perspectives of adults with CF, caregivers, and CF care team members

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.

Tue, 12/20/2022 - 12:50

Experiences of Tourette Syndrome Caregivers With Supportive Communication

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.

Tue, 12/20/2022 - 12:46

Long-Term Efficacy of the Workshop Vs. Online SUCCEAT (Supporting Carers of Children and Adolescents with Eating Disorders) Intervention for Parents: A Quasi-Randomised Feasibility Trial

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.

Tue, 12/20/2022 - 12:43

Effectiveness and acceptability of parent training via telehealth among families around the world

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.

Tue, 12/20/2022 - 12:39

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