A summary of high quality online information resources for parents with cancer who have adolescent and young adult children: A scoping review

2019 ◽  
Vol 28 (12) ◽  
pp. 2323-2335
Author(s):  
Nicole Weeks ◽  
Fiona E.J. McDonald ◽  
Pandora Patterson ◽  
Stephanie Konings ◽  
Jane Coad
Keyword(s):  
Young Adult ◽  
Adult Children ◽  
Scoping Review ◽  
Information Resources ◽  
Adolescent And Young Adult ◽  
Online Information ◽  
High Quality

scholarly journals Adolescent and young adult patients as co‐researchers: A scoping review

2021 ◽  
Author(s):  
Kjersti J. Ø. Fløtten ◽  
Ana Isabel Fernandes Guerreiro ◽  
Ilaria Simonelli ◽  
Anne Lee Solevåg ◽  
Isabelle Aujoulat
Keyword(s):  
Young Adult ◽  
Scoping Review ◽  
Adult Patients ◽  
Adolescent And Young Adult

scholarly journals Supporting Cancer Patients Who Are Also Parents: Establishment of a Cross-Sector Service for Families With Adolescent and Young Adult Children

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 241s-241s
Author(s):  
P. Patterson ◽  
P. Orchard ◽  
J. Friedsam ◽  
E. Schiena ◽  
S. Ellis
Keyword(s):  
Social Work ◽  
Young Adult ◽  
Cancer Patients ◽  
Cancer Diagnosis ◽  
Adult Children ◽  
Community Support ◽  
Parent Support ◽  
Adolescent And Young Adult ◽  
Support Worker ◽  
Sector Service

Background and context: Traditionally adult hospitals focus on the patient and less on their family. Adolescent and young adult children of cancer patients (AYA offspring) have significant psychosocial burdens associated with their parent's cancer however they are often invisible within hospitals with no clear referral pathways to community-based support. AYA offspring are 3-6 times more likely than peers to have clinically elevated levels of distress which increases with age. Research shows that 1 of the greatest concerns for parents is how to communicate about cancer with their children, and 1 of the greatest needs for AYA offspring is information about their parent's cancer and talking with their parents about it. Aim: CanTeen, a national AYA cancer community support organization, sought to address these needs by embedding a Parent Support Worker within the social work teams of tertiary hospitals for patients who are parents of AYA children. This service aims to assist with specific parenting challenges that arise due to a cancer diagnosis and establish a referral pathway for AYA offspring to CanTeen for support. Strategy/Tactics: Cofunding with philanthropic organizations was sought and CanTeen executives engaged in advocacy work with senior hospital management, demonstrating the need for the service and a plan to embed it within the existing hospital social work team and services. Program/Policy process: A new Parent Support Worker role was established to provide social work care to parents of AYA children following a parent's cancer diagnosis. The service provides support with parenting issues that arise due to the diagnosis as well as staff education, secondary consultations, and referrals of AYA offspring to CanTeen. A service improvement approach has been established with the collection of monitoring data measuring volume of referrals/sessions, capacity building of other staff, information given to young people and referrals to CanTeen. A service evaluation seeking feedback from patients and relevant hospital staff is also underway. Outcomes: To date, philanthropic funding and hospital support was gained to establish a pilot program placing a Parent Support Worker in 3 hospitals. Early indications are that this novel service is integrating well into established hospital teams and processes, and adding considerable value with the provision of this focused family support. What was learned: This advocacy initiative is highlighting the benefits of a model of care in adult hospitals that centrally considers family and the strength of a well-planned cross-sector service initiative.

scholarly journals Evaluation of Content, Readability and Design of online information resources aimed to capacitate people with stroke: Scoping Review Protocol (Preprint)

2020 ◽  
Author(s):  
Gakeemah Inglis-Jassiem ◽  
Karen Grimmer ◽  
Thandi Conradie ◽  
Quinette Louw
Keyword(s):  
Scoping Review ◽  
Information Needs ◽  
Data Extraction ◽  
Research Question ◽  
Cost Effective ◽  
Information Resources ◽  
Online Information ◽  
Practical Applications ◽  
First Results ◽  
Analyse Data

BACKGROUND People with stroke and their caregivers experience numerous information needs and internet-based resources may offer cost-effective ways to improve information on this condition, its management, including the availability of resources and support. The quality of online health information is, therefore, an important consideration for both developers and consumers of these online resources. OBJECTIVE This scoping review study, therefore, aims to map and evaluate the content, readability, understandability, design, and quality characteristics of freely available online information resources, e.g. websites, that capacitate people with stroke and caregivers with information and self-help strategies (post-stroke). METHODS The scoping review will follow the approach recommended by Levac, Colquhoun and O’Brien, which includes five steps: 1) identifying the research question, 2) identifying relevant studies, 3) selecting the studies, 4) charting the data, and 5) collating, summarising and reporting the results. synthesise and analyse data thematically. RESULTS As of July 2019, the scoping review is in the data extraction stage. Data will be synthesised, and the first results are expected to be submitted for publication in October 2020. CONCLUSIONS To our knowledge, this is the first scoping review that will comprehensively map and evaluate the typology, content, and design-related criteria, including accessibility, aesthetics, navigability, interactivity, privacy, and data protection of online information resources for Stroke. We believe our findings will have practical applications and will also hold important information for designers and end-users of these resources.

The Effect of Mid Life Divorce on Late Adolescent and Young Adult Children

1993 ◽  
Vol 19 (1-2) ◽  
pp. 209-218 ◽  
Author(s):  
Beth Swartzman-Schatman ◽  
Steven P Schinke
Keyword(s):  
Young Adult ◽  
Adult Children ◽  
Adolescent And Young Adult ◽  
Late Adolescent

scholarly journals The Burden of Late Effects and Related Risk Factors in Adolescent and Young Adult Cancer Survivors: A Scoping Review

Cancers ◽  
2021 ◽  
Vol 13 (19) ◽  
pp. 4870
Author(s):  
Charlotte Ryder-Burbidge ◽  
Ruth L. Diaz ◽  
Ronald D. Barr ◽  
Sumit Gupta ◽  
Paul C. Nathan ◽  
...  
Keyword(s):  
Risk Factors ◽  
Young Adult ◽  
Cancer Survivors ◽  
Scoping Review ◽  
Late Effects ◽  
Chronic Conditions ◽  
Adolescent And Young Adult ◽  
Cancer Type ◽  
Calendar Period ◽  
Late Mortality

Risk factors associated with late effects in survivors of adolescent and young adult (AYA) cancer are poorly understood. We conducted a systematic scoping review to identify cohort studies published in English from 2010–2020 that included: (1) cancer survivors who were AYAs (age 15–39 years) at diagnosis and (2) outcomes of subsequent malignant neoplasms (SMNs), chronic conditions, and/or late mortality (>5 years postdiagnosis). There were 652 abstracts identified and, ultimately, 106 unique studies were included, of which 23, 34, and 54 studies related to the risk of SMNs, chronic conditions, and mortality, respectively. Studies investigating late effects among survivors of any primary cancer reported that AYA cancer survivors were at higher risk of SMN, chronic conditions, and all-cause mortality compared to controls. There was an indication that the following factors increased risk: radiation exposure (n = 3) for SMNs; younger attained age (n = 4) and earlier calendar period of diagnosis (n = 3) for chronic conditions; and non-Hispanic Black or Hispanic (n = 5), low socioeconomic status (n = 3), and earlier calendar period of diagnosis (n = 4) for late mortality. More studies including the full AYA age spectrum, treatment data, and results stratified by age, sex, and cancer type are needed to advance knowledge about late effects in AYA cancer survivors.

Stress response symptoms in adolescent and young adult children of parents diagnosed with cancer

2005 ◽  
Vol 41 (2) ◽  
pp. 288-295 ◽  
Author(s):  
Gea A. Huizinga ◽  
Annemieke Visser ◽  
Winette T.A. van der Graaf ◽  
Harald J. Hoekstra ◽  
Ed C. Klip ◽  
...  
Keyword(s):  
Stress Response ◽  
Young Adult ◽  
Adult Children ◽  
Adolescent And Young Adult
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