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Young carers

Amanda Marie Blackmore, Natasha Bear, Eve Blair, Katherine Langdon, Lisa Moshovis, Kellie Steer, Andrew C Wilson
OBJECTIVE: To determine the early predictors of respiratory hospital admissions in young people with cerebral palsy (CP). DESIGN: A 3-year prospective cohort study using linked data. PATIENTS: Children and young people with CP, aged 1 to 26 years. MAIN OUTCOME MEASURES: Self-reported and carer-reported respiratory symptoms were linked to respiratory hospital admissions (as defined by the International Statistical Classification of Diseases and Related Health Problems 10th Revision codes) during the following 3 years...
March 19, 2018: Archives of Disease in Childhood
Agnes Leu, Corinna Jung, Marianne Frech, Joe Sempik, Urs Moser, Martin Verner, Saul Becker
BACKGROUND: In Switzerland, the issue of young carers and young adult carers - young people under the age of 18 and 24 respectively, who take on significant or substantial caring tasks and levels of responsibility that would usually be associated with an adult - has not been researched before. The number of these younger carers is unknown, as is the extent and kind of their caring activities and the outcomes for their health, well-being, psycho-social development, education, transitions to adulthood, future employability and economic participation...
March 15, 2018: BMC Health Services Research
Barbara Kimbell, Scott A Murray, Heidi Byrne, Andrea Baird, Peter C Hayes, Alastair MacGilchrist, Anne Finucane, Patricia Brookes Young, Ronan E O'Carroll, Christopher J Weir, Marilyn Kendall, Kirsty Boyd
BACKGROUND: Liver disease is an increasing cause of death worldwide but palliative care is largely absent for these patients. AIM: We conducted a feasibility trial of a complex intervention delivered by a supportive care liver nurse specialist to improve care coordination, anticipatory care planning and quality of life for people with advanced liver disease and their carers. DESIGN: Patients received a 6-month intervention (alongside usual care) from a specially trained liver nurse specialist...
March 1, 2018: Palliative Medicine
Martin Nagl-Cupal, Julia Hauprich
Children and adolescents with caring responsibilities are an uncontested reality in our society. Most are hidden from public view, and they perform a broad range of caring activities for chronically ill or disabled family members. The research literature has accumulated a comprehensive body of knowledge about young carers' personal needs. However, knowledge and understanding are limited regarding the needs of young carers' families. This knowledge can contribute to preventing children and adolescents from assuming inappropriate caring roles...
March 5, 2018: Health & Social Care in the Community
Marthe Le Prevost, Alejandro Arenas-Pinto, Diane Melvin, Francesca Parrott, Caroline Foster, Deborah Ford, Michael Evangeli, Alan Winston, Kate Sturgeon, Katie Rowson, Diana M Gibb, Ali Judd
Adolescents with perinatal HIV (PHIV) may be at higher risk of anxiety and depression than HIV negative young people. We investigated prevalence of anxiety and depression symptoms in 283 PHIV and 96 HIV-affected (HIV-negative) young people in England recruited into the Adolescents and Adults Living with Perinatal HIV (AALPHI) cohort. We used Hospital Anxiety and Depression Scale (HADS) scores and linear regression investigated predictors of higher (worse) scores.115 (41%) and 29 (30%) PHIV and HIV-affected young people were male, median age was 16 [interquartile range 15,18] and 16 [14,18] years and 241 (85%) and 71 (74%) were black African, respectively...
March 4, 2018: AIDS Care
Chloe Rodgers, David Rogerson, Judy Stevenson, Davina Porock
BACKGROUND: Physical activity has been cited as a potential symptomatic treatment option for people living with dementia. At present, much of the research concerning physical activity and dementia considers older adults, and there are several review articles summarising the evidence in this area. Less is known about physical activity for younger people with dementia, despite the marked differences in needs and preferences between the two groups. The aim of this scoping review is to systematically explore and critically appraise the current state of the evidence regarding physical activity for people with young-onset dementia and carers...
February 27, 2018: Systematic Reviews
Emma McDougall, Moira O'Connor, Joel Howell
There are approximately 350,000 young carers in Australia, yet their experience is not well understood. Young carers face adversities and disenfranchisement by being a young person in a caring role, and the role can affect other areas of their lives. We explored the lived experiences of young carers, aged 14-25 years (N = 13), from Western Australia through in-depth semi-structured interviews. A phenomenological approach was adopted. A thematic analysis of the transcribed interview data revealed four key themes...
February 19, 2018: Health & Social Care in the Community
Rhys Bevan Jones, Anita Thapar, Frances Rice, Harriet Beeching, Rachel Cichosz, Becky Mars, Daniel J Smith, Sally Merry, Paul Stallard, Ian Jones, Ajay K Thapar, Sharon A Simpson
BACKGROUND: Depression is common in adolescence and leads to distress and impairment in individuals, families and carers. Treatment and prevention guidelines highlight the key role of information and evidence-based psychosocial interventions not only for individuals but also for their families and carers. Engaging young people in prevention and early intervention programs is a challenge, and early treatment and prevention of adolescent depression is a major public health concern. There has been growing interest in psychoeducational interventions to provide accurate information about health issues and to enhance and develop self-management skills...
February 15, 2018: JMIR Mental Health
Dougal S Hargreaves, Steve Sizmur, Jacqueline Pitchforth, Amy Tallett, Sara L Toomey, Bridget Hopwood, Mark A Schuster, Russell M Viner
OBJECTIVE: Despite growing interest in children and young people's (CYP) perspectives on healthcare, they continue to be excluded from many patient experience surveys. This study investigated the feasibility of, and additional information gained by, measuring CYP experiences of a recent hospital admission. DESIGN: Cross-sectional analysis of national survey data. SETTING: Inpatients aged 8-15 years in eligible National Health Service hospitals, July-September 2014...
February 6, 2018: Archives of Disease in Childhood
Fiona Robards, Melissa Kang, Tim Usherwood, Lena Sanci
PURPOSE: This systematic review examines how marginalized young people access and engage with health services and navigate health-care systems in high-income countries. METHODS: Medline, CINAHL, PsychInfo, The University of Sydney Library database, and Google Scholar were searched to identify qualitative and quantitative original research, published from 2006 to 2017, that focused on selected definitions of marginalized young people (12 to 24 years), their parents/carers, and/or health professionals working with these populations...
February 8, 2018: Journal of Adolescent Health: Official Publication of the Society for Adolescent Medicine
Asangaedem Akpan, Charlotte Roberts, Karen Bandeen-Roche, Barbara Batty, Claudia Bausewein, Diane Bell, David Bramley, Julie Bynum, Ian D Cameron, Liang-Kung Chen, Anne Ekdahl, Arnold Fertig, Tom Gentry, Marleen Harkes, Donna Haslehurst, Jonathon Hope, Diana Rodriguez Hurtado, Helen Lyndon, Joanne Lynn, Mike Martin, Ruthe Isden, Francesco Mattace Raso, Sheila Shaibu, Jenny Shand, Cathie Sherrington, Samir Sinha, Gill Turner, Nienke De Vries, George Jia-Chyi Yi, John Young, Jay Banerjee
BACKGROUND: The International Consortium for Health Outcomes Measurement (ICHOM) was founded in 2012 to propose consensus-based measurement tools and documentation for different conditions and populations.This article describes how the ICHOM Older Person Working Group followed a consensus-driven modified Delphi technique to develop multiple global outcome measures in older persons. The standard set of outcome measures developed by this group will support the ability of healthcare systems to improve their care pathways and quality of care...
February 2, 2018: BMC Geriatrics
Behrooz Behbod, Mohit Sharma, Ruchi Baxi, Robert Roseby, Premila Webster
BACKGROUND: Children's exposure to other people's tobacco smoke (environmental tobacco smoke, or ETS) is associated with a range of adverse health outcomes for children. Parental smoking is a common source of children's exposure to ETS. Older children in child care or educational settings are also at risk of exposure to ETS. Preventing exposure to ETS during infancy and childhood has significant potential to improve children's health worldwide. OBJECTIVES: To determine the effectiveness of interventions designed to reduce exposure of children to environmental tobacco smoke, or ETS...
January 31, 2018: Cochrane Database of Systematic Reviews
Sarah L Rowe, Krisna Patel, Rebecca S French, Claire Henderson, Dennis Ougrin, Mike Slade, Paul Moran
BACKGROUND: Adolescents who self-harm are often unsure how or where to get help. We developed a Web-based personalized decision aid (DA) designed to support young people in decision making about seeking help for their self-harm. OBJECTIVE: The aim of this study was to evaluate the feasibility and acceptability of the DA intervention and the randomized controlled trial (RCT) in a school setting. METHODS: We conducted a two-group, single blind, randomized controlled feasibility trial in a school setting...
January 30, 2018: JMIR Mental Health
Jennifer M Waite-Jones, Rabiya Majeed-Ariss, Joanna Smith, Simon R Stones, Vanessa Van Rooyen, Veronica Swallow
BACKGROUND: There is growing evidence that supporting self-management of Juvenile Arthritis can benefit both patients and professionals. Young people with Juvenile Arthritis and their healthy peers increasingly use mobile technologies to access information and support in day-to-day life. Therefore, a user-led, rigorously developed and evaluated mobile app could be valuable for facilitating young people's self-management of Juvenile Arthritis. OBJECTIVE: The objective of this study was to seek the views of young people with Juvenile Arthritis, their parents or carers, and health care professionals (HCPs) as to what should be included in a mobile app to facilitate young people's self-management of chronic Juvenile Arthritis...
January 19, 2018: JMIR MHealth and UHealth
Abner Weng Cheong Poon, Jackie Curtis, Philip Ward, Celia Loneragan, Julia Lappin
OBJECTIVE: Carers of people with psychosis may experience psychological distress and caregiving burden. However, few studies have examined both psychological and physical health of carers of young people with first episode psychosis (FEP). METHOD: A total of 32 young people with FEP and 42 of their carers were recruited from a mental health service. Standardised scales were administered to assess carers' psychological distress and risk for development of Type 2 diabetes...
January 1, 2018: Australasian Psychiatry: Bulletin of Royal Australian and New Zealand College of Psychiatrists
Sarah E Johnson, David Lawrence, Francisco Perales, Janeen Baxter, Stephen R Zubrick
This paper provides Australian population-level estimates of the prevalence of parental self-reported lifetime mental disorders and past 12 month mental disorders in their children. It leverages unique data from the 2013-2014 Australian Child and Adolescent Survey of Mental Health and Wellbeing (Young Minds Matter) (n = 6310). Mental disorders were assessed in 4-17 year-olds using the Diagnostic Interview Schedule for Children Version IV. Primary carer (PC) and secondary carer mental health was based on PC-reported lifetime diagnoses...
December 30, 2017: Community Mental Health Journal
Marija Burgić Radmanović, Sanela Burgić
Most mental disorders begin during developmental age. Different misinformation about mental illnesses cause anxiety, create stereotypes and promote stigma. Stigma has been identified as a likely key factor in mental health services access and utilization, particularly under-utilization of existing services especially in children with mental disorders. Stigma is a problem with which parents / carers face child emotional and behavioral problems when they seek professional help. Very often they avoid to seek professional help due to existing stigmatized attitudes leading to lack of treatment...
December 2017: Psychiatria Danubina
Kate O'Reilly
PURPOSE: The aim of the study was to describe how paid carers use humor in providing compassionate post-intensive rehabilitation care to young adults with acquired brain injury (ABI) who are unable to perform or direct their own care. DESIGN: This is a qualitative study underpinned by symbolic interactionism. METHODS: Paid carers in a residential aged care facility were interviewed. Interview data were analyzed using grounded theory methods of coding, comparative analysis, memoing, and theoretical sampling...
July 2017: Rehabilitation Nursing: the Official Journal of the Association of Rehabilitation Nurses
Maria C McCarthy, Robyn McNeil, Sarah Drew, Lisa Orme, Susan M Sawyer
PURPOSE: This study aimed to explore health-related information needs of adolescent and young adults (AYAs) and their parent-carers and to examine demographic and clinical variables associated with unmet information needs, including patient activation. METHODS: In a national cross-sectional study, 196 Australian AYAs diagnosed with cancer between 15 and 25 years and within 24 months of diagnosis and 204 parent-carers reported on total and unmet needs for cancer and health-related information...
December 8, 2017: Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer
Lisa G Smithers, John Lynch, Joanne Hedges, Lisa M Jamieson
There are marked disparities between indigenous and non-indigenous children's diets and oral health. Both diet and oral health are linked to longer-term health problems. We aimed to investigate whether a culturally appropriate multi-faceted oral health promotion intervention reduced Aboriginal children's intake of sugars from discretionary foods at 2 years of age. We conducted a single-blind, parallel-arm randomised controlled trial involving women who were pregnant or had given birth to an Aboriginal child in the previous 6 weeks...
December 2017: British Journal of Nutrition
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