Young carers

OBJECTIVE: To estimate the number of patients on paediatric wards in England who received nasogastric tube (NGT) feeding under physical restraint from April 2022 to March 2023, identify the demographics and clinical characteristics of these patients, and which personnel facilitated the restraint. DESIGN: Audit and anonymous case series SETTING: Paediatric wards in England. PATIENTS: Children and young people receiving this intervention in a 1-year period...

BACKGROUND: Respiratory infection is a major cause of disease severity in people with cystic fibrosis (PwCF). This project aimed to establish the CF community's opinion regarding cross infection (CI), nebuliser hygiene, antimicrobial resistance, personal impact of microbiological findings and the role of the microbiology laboratory. METHODS: A questionnaire was completed anonymously (n = 280; PwCF (n = 128), parents (n = 123); friends/family/carers/charity personnel (n = 29)) from 13 countries...

AIM: To evaluate the implementation of a mixed virtual and in-person brief intervention for young people, aged 12-25 years, presenting to a large urban mental health service in crisis with suicidal ideation and/or self-harm. METHODS: A pragmatic, real-world evaluation was conducted on the Youth Brief Intervention Service between June 2021 (inception) and October 2022. Service users were offered four sessions over an approximate one-month period. Sessions focused on distress tolerance, safety plans and support systems...

INTRODUCTION: Despite substantial research and provision of dental care, significant morbidity remains for children's oral health. Guided by social practice theory (SPT), this research moves away from the often-ineffective focus on changing individual behavior to rethinking the centrality of the social world in promoting or undermining oral health outcomes. We define social practice as a routinized relational activity linking and integrating certain elements (competence, materials, and meanings) into the performance of a practice that is reproduced across time and space...

Young-onset dementia (YOD) affects individuals under 65 years of age, often leading to loss of employment and independence. Families provide increasing levels of care to family members with YOD, resulting in changes to their daily lives, including their occupational pursuits. This review examines evidence of the occupational implications for family members who provide care to a family with YOD to identify: (i) the influence and impact caregiving tasks and responsibilities have on employment, volunteering, and education, and (ii) caregiver, and caregiving situation factors associated with changes in employment, volunteering, and education...

Background: In 1990, the United States' Institute of Medicine promoted the principles of outcomes monitoring in the alcohol and other drugs treatment field to improve the evidence synthesis and quality of research. While various national outcome measures have been developed and employed, no global consensus on standard measurement has been agreed for addiction. It is thus timely to build an international consensus. Convened by the International Consortium for Health Outcomes Measurement (ICHOM), an international, multi-disciplinary working group reviewed the existing literature and reached consensus for a globally applicable minimum set of outcome measures for people who seek treatment for addiction...

BACKGROUND: Pediatric rheumatology is a term that encompasses over 80 conditions affecting different organs and systems. Children and young people with rheumatological chronic conditions are known to have high levels of mental health problems and therefore are at risk of poor health outcomes. Clinical psychologists can help children and young people manage the daily difficulties of living with one of these conditions; however, there are insufficient pediatric psychologists in the United Kingdom...

Globally, many children and young people provide support to family members who have poor physical or mental health, are disabled, or misuse drugs and alcohol. These young carers are at higher risk of poorer education, employment, health, and social participation outcomes compared to their peers without caring responsibilities. In the UK, awareness of the challenges faced by young carers, and a framework of their legal rights, are relatively well-developed. However, it is unclear how support can most effectively be provided...

PURPOSE: Many children and adolescents support relatives with cancer. However, literature about young carers (YCs) shows a lack of awareness among professionals, especially in oncology. This quantitative study aims to explore the level of knowledge and perceptions of healthcare professionals working with cancer patients about the situations and characteristics of YCs. METHODS: 395 professionals participated in an online survey. Professionals reported sociodemographic and professional information and answered several questions evaluating their perceptions about YCs, such as the types of support provided and the consequences of being a YC...

INTRODUCTION: Scholars worldwide have defined the COVID-19 pandemic as a mass-disabling event of our time. The situation is grave for families experiencing financial hurdles while caring for young adults in recovery from addiction problems. METHODS: Using semi-structured interviews with 30 purposively selected family caregivers (FCGs) of young adults with substance use disorders (SUDs) in Lusaka, Zambia, this study reveals several factors influencing forgone healthcare for this medically vulnerable group...

PROBLEM: The significance and complexities of a psychiatric diagnosis have been well-documented in existing literature. Despite the reliability and accuracy of such diagnoses, the impact and use of diagnostic labelling on young people remains unclear. METHODS: A systematic review was conducted using six databases, identifying 13 studies that explored psychiatric diagnosis experiences in professionals, caregivers, and young people. FINDINGS: This review focuses on three main themes related to psychiatric diagnosis in young people...

Aims: This systematic review aims to identify and describe how children of parents with mental illness, substance dependence, or severe physical illness/injury, experience and practise their everyday life. Methods: The review followed the four stepwise recommendations of Harden and colleagues when including quantitative and qualitative studies on peoples' experiences and views. In all, 23 studies with data from Norway (2010-2022) have been included. Brown and Clark's thematic analysis was applied. Results: Three themes were constructed from the reviewed articles: (a) Children practice their relational agency by actively doing practical tasks, occasionally jobs to maintain family economy, and organising fun activities with the ill parent...

OBJECTIVES: Priority Setting Partnerships (PSP's) using the James Lind Alliance (JLA) methodology, bring together health professionals, patients and parents/carers to identify and prioritise unanswered questions that can be addressed by future research projects. To identify and prioritise the top 10 unanswered research priorities in digital technology for adolescents and young people (AYP) with inflammatory bowel disease (IBD). METHODS: A steering group (SG) consisting of AYP with IBD, their parents/carers, representatives from two charities (Crohn's & Colitis UK, Crohn's in Childhood Research Association), patient information forum and paediatric and adult and primary care healthcare professionals was established in 2021...

PURPOSE: Family-based treatment (FBT) has contributed significantly to the treatment of anorexia nervosa (AN) in young people (YP). However, parents are concerned that FBT and the active role of parents in the task of refeeding may have a negative impact on family relations. The aim of the review is to assess whether families engaged in FBT for AN are more or less impacted in their family wellbeing and caregiver burden, compared to families with a YP diagnosed with AN, who are not undergoing treatment with FBT...

The Network Episode Model (NEM) is a well utilised model conceptualising how social networks, valuable resources which can positively impact wellbeing and functional outcomes, are responsive to the needs of people with physical and mental health difficulties. Children of parents with severe and enduring mental illness (COPMI) are impacted by these illnesses through the intersecting roles of kin relation, informal carer, and dependent. However, it is not clear that social networks effectively respond in kind to the child's episodic need...

Inclusive practices mean many children with autism spectrum disorders (ASD) attend mainstream education settings. To manage the stressors involved and access its benefits, support can be critical. Indeed, insufficient support can detrimentally impact wellbeing, longer-term development, and the inclusivity agenda. Expanding a limited evidence-base on educational support after diagnosis, focus groups and interviews were conducted for eight parent/carers of children with ASD, twelve special education needs (SEN) school staff, and four children with ASD attending mainstream school...

BACKGROUND: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is limited. AIM: To identify the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures for children with life-limiting and life-threatening conditions. DESIGN: Cross-sectional qualitative semi-structured interview study with key stakeholders analysed using Framework analysis informed by the adapted-Consolidated Framework for Implementation Research...

INTRODUCTION: Quantifying differences in service provision for children and young people (CYP) living with Congenital Adrenal Hyperplasia (CAH) across the United Kingdom. METHODS: A national service evaluation using online questionnaires circulated to patients and clinicians from secondary and tertiary UK centres managing CYP with CAH, and via the "Living with CAH" support group mailing list. RESULTS: Total of 195 responses relating to patients aged 0-20 years attending 33 clinics (43 patients, 152 carers), as well as 34 clinicians from 18 trusts working across the 33 clinics...

To address Young Carers' (YCs) needs for space and opportunities to reflect and exchange, a guided peer-support programme, the "Get-togethers", was developed in collaboration with YC in Switzerland in 2018. In order to evaluate if the Get-togethers were able to meet their originally set goals of (1) strengthening support among YCs, (2) promoting their life skills, (3) strengthening their social network and (4) promoting the inclusion and participation of YCs, participants of the Get-togethers were asked to complete a short questionnaire about their participation in and experiences with the Get-togethers...

CONTEXT: To identify the characteristics of adolescent young carers (AYCs), studies in the literature have compared them with non-AYCs, but without considering that in the latter group, some face the illness of a relative whereas others do not. OBJECTIVES: The aims of the study were (1) to identify the characteristics of AYCs as compared with adolescents who are not young carers but are facing the illness/disability of a relative, or adolescents not facing the illness/disability of a relative, and (2) to identify factors associated with being a carer within adolescents facing a relative illness...