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Full-Text Articles in Medicine and Health Sciences
Social Isolation Among Families Caring For Children With Disabilities, Dennis J. Baumgardner
Social Isolation Among Families Caring For Children With Disabilities, Dennis J. Baumgardner
Journal of Patient-Centered Research and Reviews
In this issue introduction, the editor-in-chief of Journal of Patient-Centered Research and Reviews comments on the social isolation experienced by families that include children with significant disabilities.
Factors Influencing Family Burden In Pediatric Hematology/Oncology Encounters, Hannah R. Abrams, Hayden S. Leeds, Heidi V. Russell, Melody B. Hellsten
Factors Influencing Family Burden In Pediatric Hematology/Oncology Encounters, Hannah R. Abrams, Hayden S. Leeds, Heidi V. Russell, Melody B. Hellsten
Journal of Patient-Centered Research and Reviews
Purpose: Caring for a child with cancer or hematologic disease places unique stress on a family unit. Families’ subjective experience of this care-related burden mediates the relationship between cost and health-related outcomes. While financial costs are well described for families of pediatric hematology/oncology patients, it is unclear how cost and other factors each contribute to families’ overall experience of care-related burden. This study identifies and groups the challenges that families report and describes their association with overall reported burden.
Methods: This mixed-methods analysis of a cross-sectional single-center study was conducted via structured, self-administered questionnaire provided to inpatient and outpatient caregivers …
Confidential Care For Adolescents In The U.S. Health Care System, Priya R. Pathak, Adriana Chou
Confidential Care For Adolescents In The U.S. Health Care System, Priya R. Pathak, Adriana Chou
Journal of Patient-Centered Research and Reviews
In providing care for adolescents, maintaining confidentiality should be considered a human right and an evidence-based component of quality care. Unfortunately, complexities in the U.S. legal and health care systems have created a setting in which confidential care is inaccessible to many adolescent patients. Federal laws provide a minimum standard for confidentiality protections, but variations in state legislation relating to minor consent, special health care services, and confidentiality exemptions create large variability in adolescent confidentiality rights across the country. In certain contexts, such as consensual sexual activity, legal provisions may not align with professional ethical standards in adolescent care. In …