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https://www.readbyqxmd.com/read/27916344/advance-care-discussions-with-young-people-affected-by-life-limiting-neuromuscular-diseases-a-systematic-literature-review-and-narrative-synthesis
#1
Andy Hiscock, Isla Kuhn, Stephen Barclay
End of life care policy in the UK advocates open discussions between health professionals and patients as the end of life approaches. Despite well documented understanding of the progression of life-limiting neuromuscular diseases, the majority of patients affected by such conditions die without a formal end of life plan in place. We performed a systematic review to investigate conversations regarding end of life care between healthcare professionals and younger adult patients with life-limiting neuromuscular diseases...
November 21, 2016: Neuromuscular Disorders: NMD
https://www.readbyqxmd.com/read/27910173/facilitators-and-barriers-to-person-centred-care-in-child-and-young-people-mental-health-services-a-systematic-review
#2
Dawid Gondek, Julian Edbrooke-Childs, Tjasa Velikonja, Louise Chapman, Felicity Saunders, Daniel Hayes, Miranda Wolpert
: Implementation of person-centred care has been widely advocated across various health settings and patient populations, including recent policy for child and family services. Nonetheless, evidence suggests that service users are rarely involved in decision-making, whilst their preferences and goals may be often unheard. The aim of the present research was to systematically review factors influencing person-centred care in mental health services for children, young people and families examining perspectives from professionals, service users and carers...
December 2, 2016: Clinical Psychology & Psychotherapy
https://www.readbyqxmd.com/read/27902951/exploring-children-s-perspectives-of-engagement-with-their-carers-using-factor-analysis
#3
Tania Withington, Ray Duplock, Judith Burton, Areana Eivers, Bob Lonne
Positive engagement between a child and carer in out-of-home care is understood to have long-term benefits for children who have experienced abuse or neglect. This study analysed data from the 'Views of Children and Young People in Foster Care 2009' survey of 937 children in out-of-home care in Queensland, Australia, to identify factors that supported or hindered engagement between a child and carer. Exploratory and confirmatory factor analysis and structural regression were used. Findings suggest that children's engagement with their carer is influenced by a range of internal and external factors including child characteristics, the care experience, contact with biological parents, and placement trajectory...
November 27, 2016: Child Abuse & Neglect
https://www.readbyqxmd.com/read/27900176/systematic-review-of-physical-activity-and-exercise-interventions-to-improve-health-fitness-and-well-being-of-children-and-young-people-who-use-wheelchairs
#4
Thomas D O'Brien, Jane Noyes, Llinos Haf Spencer, Hans-Peter Kubis, Richard P Hastings, Rhiannon Whitaker
AIM: To perform a systematic review establishing the current evidence base for physical activity and exercise interventions that promote health, fitness and well-being, rather than specific functional improvements, for children who use wheelchairs. DESIGN: A systematic review using a mixed methods design. DATA SOURCES: A wide range of databases, including Web of Science, PubMed, BMJ Best Practice, NHS EED, CINAHL, AMED, NICAN, PsychINFO, were searched for quantitative, qualitative and health economics evidence...
2016: BMJ Open Sport & Exercise Medicine
https://www.readbyqxmd.com/read/27867244/community-based-organisations-for-vulnerable-children-in-south-africa-reach-psychosocial-correlates-and-potential-mechanisms
#5
A R Yakubovich, L Sherr, L D Cluver, S Skeen, I S Hensels, A Macedo, M Tomlinson
Community-based organisations (CBOs) have the potential to provide high quality services for orphaned and vulnerable children in resource-limited settings. However, evidence is lacking as to whether CBOs are reaching those who are most vulnerable, whether attending these organisations is associated with greater psychosocial wellbeing, and how they might work. This study addressed these three questions using cross-sectional data from 1848 South African children aged 9-13. Data were obtained from the Young Carers and Child Community Care studies, which both investigated child wellbeing in South Africa using standardised self-report measures...
March 2016: Children and Youth Services Review
https://www.readbyqxmd.com/read/27863287/bone-health-in-the-elderly-cancer-patient-a-siog-position-paper
#6
REVIEW
J J Body, E Terpos, B Tombal, P Hadji, A Arif, A Young, M Aapro, R Coleman
More than a third of cancers are diagnosed in people over the age of 75. Androgen deprivation for prostate cancer and aromatase inhibitors in breast cancer accelerate age-related bone loss and increase fracture rates. BMD should be checked by dual energy X-ray absorptiometry at baseline and, dependent on risk, every 12-24months. Sufficient calcium, vitamin D and exercise are part of primary fracture prevention. Resistance exercise in particular may improve functional activity and bone density. In men at increased fracture risk and women with postmenopausal early breast cancer, antiresorptive treatment is warranted to reduce fracture rate and to increase overall survival in breast cancer...
December 2016: Cancer Treatment Reviews
https://www.readbyqxmd.com/read/27843003/-social-participation-after-childhood-craniopharyngioma
#7
C Olivari-Philiponnet, F Roumenoff, M Schneider, C Chantran, M Picot, P Berlier, C Mottolese, J-C Bernard, C Vuillerot
: Craniopharyngioma is a rare, benign central nervous system tumor, which may be a source of multiple complications, from endocrinology to vision, neurology and neurocognitive functions. This morbidity can lead to reduced participation in life activities, as described in the International Classification of Functioning, Disability, and Health. The primary objective of this study was to measure participation in life activities in a population of children and young adults affected by childhood craniopharyngioma, using the LIFE-H questionnaire (Assessment of Life Habits), validated as a social participation measurement tool in various pediatric disabilities...
November 10, 2016: Archives de Pédiatrie: Organe Officiel de la Sociéte Française de Pédiatrie
https://www.readbyqxmd.com/read/27829425/evaluation-of-a-pilot-of-nurse-practitioner-led-gp-supported-rural-palliative-care-provision
#8
Geoffrey Keith Mitchell, Hugh Edgar Senior, Michael Peter Bibo, Blessing Makoni, Sharleen Nicole Young, John Patrick Rosenberg, Patsy Yates
BACKGROUND: Providing end of life care in rural areas is challenging. We evaluated in a pilot whether nurse practitioner (NP)-led care, including clinical care plans negotiated with involved health professionals including the general practitioner(GP), ± patient and/or carer, through a single multidisciplinary case conference (SMCC), could influence patient and health system outcomes. METHODS: Setting - Australian rural district 50 kilometers from the nearest specialist palliative care service...
November 9, 2016: BMC Palliative Care
https://www.readbyqxmd.com/read/27795658/outcomes-of-a-comparison-study-into-a-group-based-infant-parenting-programme
#9
Catrin Hedd Jones, Mihela Erjavec, Simon Viktor, Judy Hutchings
This paper reports on a quantitative evaluation of a group-based programme designed to promote parent-infant attachment and child development. Whilst group-based parenting programmes are recommended for treating and preventing conduct disorder in older children, there is, as yet, little evidence as to whether they have a positive effect on very young children and their carers'. Recent UK Government initiatives to support families and improve parenting skills in the first 2 years of children's lives have increased the demand for the delivery and evaluation of community-based programmes...
2016: Journal of Child and Family Studies
https://www.readbyqxmd.com/read/27793550/pain-report-and-musculoskeletal-impairment-in-young-people-with-severe-forms-of-cerebral-palsy-a-population-based-series
#10
Brona C McDowell, Catherine Duffy, Claire Lundy
BACKGROUND: While pain is reportedly more prevalent in more functionally impaired children with cerebral palsy, information is scant in those with poor communication skills. METHODS: Young people (4-27 years) with severe forms of cerebral palsy were recruited from a population-based register. The Child Health Questionnaire (CHQ) provided information on general health and bodily pain; the Paediatric Pain Profile (PPP) was used for participants with limited communication; and the Spinal Alignment and Range of Motion Measure (SAROMM) described musculoskeletal impairment...
October 25, 2016: Research in Developmental Disabilities
https://www.readbyqxmd.com/read/27755327/fever-management-in-the-emergency-department-of-the-children-s-hospital-of-fudan-university-a-best-practice-implementation-project
#11
Fei Hu, Jiayan Zhang, Shupeng Shi, Zhang Zhou
BACKGROUND: Febrile illness in young children usually indicates an underlying infection and is a cause of concern for parents and carers. It is very important that healthcare professionals know how to recognize fever, assess children with fever, treat children with fever and role of nurses and parents. This paper outlines a best practice implementation project on the management of fever in children in an emergency department. OBJECTIVES: To audit current practice of fever management for children in an emergency department and to implement strategies to standardize pediatric fever management based on evidence-based practice guidelines...
September 2016: JBI Database of Systematic Reviews and Implementation Reports
https://www.readbyqxmd.com/read/27743537/analysing-uk-clinicians-understanding-of-cognitive-symptoms-in-major-depression-a-survey-of-primary-care-physicians-and-psychiatrists
#12
R Hamish McAllister-Williams, Kate Bones, Guy M Goodwin, John Harrison, Cornelius Katona, Jill Rasmussen, Sarah Strong, Allan H Young
BACKGROUND: Cognitive dysfunction occurs in depression and can persist into remission. It impacts on patient functioning but remains largely unrecognised, unmonitored and untreated. We explored understanding of cognitive dysfunction in depression among UK clinicians. METHODS: A multi-step consultation process. Step 1: a multi-stakeholder steering committee identified key themes of burden, detection and management of cognitive dysfunction in depression, and developed statements on each to explore understanding and degree of agreement among clinicians...
September 28, 2016: Journal of Affective Disorders
https://www.readbyqxmd.com/read/27739640/are-increasing-volumes-of-children-and-young-people-presenting-to-emergency-departments-due-to-increasing-severity-of-illness
#13
Damian Roland, Sam Jones, Tim Coats, Ffion Davies
BACKGROUND: Increasing utilisation of Emergency and Acute Care services by children and young people is a worldwide trend. This is thought to be a result of parent and carer desire for more "on demand" health care assessment and not a consequence of increasing severity of disease. A bespoke acuity assessment system in our department allowed us to test this hypothesis. METHODS: This data is based on the Paediatric Observation Priority Score, a previously published and validated assessment tool designed specifically for Paediatric Emergency Care [1]...
October 14, 2016: Academic Emergency Medicine: Official Journal of the Society for Academic Emergency Medicine
https://www.readbyqxmd.com/read/27724940/parents-experiences-of-living-with-and-caring-for-children-adolescents-and-young-adults-with-mucopolysaccharidosis-mps
#14
S Somanadhan, P J Larkin
BACKGROUND: Many rare diseases of childhood are life-threatening and chronically debilitating, so living with a rare disease is an on-going challenge for patients and their families. MPS is one of a range of rare inherited metabolic disorders (IMDs) that come under category 3 of life-limiting conditions, where there is no curative treatment available at present. Although the study of rare diseases is increasingly novel, and of clinical importance to the population, the lack of empirical data in the field to support policy and strategy development is a compelling argument for further research to be sought...
October 10, 2016: Orphanet Journal of Rare Diseases
https://www.readbyqxmd.com/read/27719869/prognosis-of-functional-neurologic-disorders
#15
J Gelauff, J Stone
The prognosis of functional (psychogenic) neurologic disorders is important in being able to help answer patients' and carers' questions, determine whether treatment is worthwhile, and to find out which factors predict outcome. We reviewed data on prognosis of functional neurologic disorders from two systematic reviews on functional motor disorders and dissociative (nonepileptic) seizures as well as additional studies on functional visual and sensory symptoms. Methodologic problems include heterogeneity in studied samples and outcome measures, diagnostic suspicion and referral bias, small size and retrospective design of available studies, possible treatments during follow-up, and literature review bias...
2017: Handbook of Clinical Neurology
https://www.readbyqxmd.com/read/27704550/recommended-strategies-for-the-oral-administration-of-paediatric-medicines-with-food-and-drinks-in-the-context-of-their-biopharmaceutical-properties-a-review
#16
Joana Martir, Talia Flanagan, James Mann, Nikoletta Fotaki
OBJECTIVES: This review focuses on the recommended strategies for the oral administration of paediatric medicines with food in the context of their biopharmaceutical properties. KEY FINDINGS: Acceptability of oral medicines in young patients is more challenging than in adult patients. Mixing oral dosage forms with foods and drinks is sometimes suggested to administer a specific dose and enhance compliance in the paediatric population. In this review, the strategies for the co-administration of paediatric medicines with food and drinks are discussed...
October 5, 2016: Journal of Pharmacy and Pharmacology
https://www.readbyqxmd.com/read/27697878/study-protocol-of-the-yp-face-it-feasibility-study-comparing-an-online-psychosocial-intervention-versus-treatment-as-usual-for-adolescents-distressed-by-appearance-altering-conditions-injuries
#17
Heidi Williamson, Claire Hamlet, Paul White, Elsa M R Marques, Julia Cadogan, Rohan Perera, Nichola Rumsey, Leighton Hayward, Diana Harcourt
INTRODUCTION: A significant number of adolescents suffer extensive and enduring difficulties such as social anxiety, body image dissatisfaction, low self-esteem and bullying as a result of conditions or injuries that affect their appearance (eg, craniofacial and skin conditions, treatment side effects and scarring). Evidence-based psychosocial interventions to meet their specific needs are currently lacking. YP Face IT, developed by the UK's Centre for Appearance Research in collaboration with clinical experts and young people, is an innovative online psychosocial intervention designed to offer this group immediate support, advice and coping strategies...
October 3, 2016: BMJ Open
https://www.readbyqxmd.com/read/27572272/rhapsody-internet-based-support-for-caregivers-of-people-with-young-onset-dementia-program-design-and-methods-of-a-pilot-study
#18
Alexander Kurz, Christian Bakker, Markus Böhm, Janine Diehl-Schmid, Bruno Dubois, Catarina Ferreira, Heather Gage, Caroline Graff, Thierry Hergueta, Sabine Jansen, Bridget Jones, Alexander Komar, Alexandre de Mendonça, Anna Metcalfe, Katrina Milecka, Joany Millenaar, Anneli Orrung Wallin, Jan Oyebode, Helga Schneider-Schelte, Susanna Saxl, Marjolein de Vugt
BACKGROUND: Young Onset Dementia (YOD), defined by first symptoms of cognitive or behavioral decline occurring before the age of 65 years, is relatively rare compared to dementia of later onset, but it is associated with diagnostic difficulty and heavy burden on affected individuals and their informal carers. Existing health and social care structures rarely meet the needs of YOD patients. Internet-based interventions are a novel format of delivering health-related education, counseling, and support to this vulnerable yet underserved group...
August 30, 2016: International Psychogeriatrics
https://www.readbyqxmd.com/read/27555666/annals-express-the-investigation-of-children-and-adolescents-with-abnormalities-of-pubertal-timing
#19
Christina Wei, Nikki L Davis, John W Honour, Elizabeth C Crowne
Concerns with pubertal development are common and can cause considerable distress to patients and their carers. Many presentations reflect normal variations of pubertal timing and primarily require reassurance, although patients may opt for interventions. Other presentations need active management to avoid significant adverse effects on growth and psychosocial development. All should undergo careful assessment, particularly as some children or adolescents presenting with abnormalities in pubertal timing may have serious pathology which requires urgent investigations and treatment...
August 22, 2016: Annals of Clinical Biochemistry
https://www.readbyqxmd.com/read/27554862/making-sense-of-bereavement-in-people-with-profound-intellectual-and-multiple-disabilities-carer-perspectives
#20
Hannah Young, James Hogg, Brenda Garrard
BACKGROUND: People with intellectual disabilities are thought to have a reduced capacity for understanding death. Drawing on cognitive theory, researchers have suggested that those with profound intellectual and multiple disabilities mainly perceive loss as a mismatch between past and present experiences. However, very little research has considered how carers conceptualize bereavement in relation to this group. METHOD: Semi-structured interviews obtained responses from seven carers...
August 24, 2016: Journal of Applied Research in Intellectual Disabilities: JARID
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