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Participation Rates and Perceptions of Caregiving Youth Providing Home Health Care

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Abstract

Little is known about the population of caregiving youth in the United States. We sought to describe the participation rates, demographics, and caregiving tasks among sixth graders served by the American Association of Caregiving Youth (AACY) in its Caregiving Youth Project (CYP) in Palm Beach County, FL and evaluate the perceived benefit of AACY services. Sixth grade enrollment data from eight middle schools between 2007 and 2013 were obtained from The School District of Palm Beach County and the AACY. Data were obtained using a retrospective review of AACY program participant files. These files contained responses to evaluative questions from both students and family members. Overall, 2.2 % of sixth graders enrolled and participated in the program. Among the 396 caregiving sixth graders studied, care recipients were predominantly a grandparent (40.6 %) or parent (30.5 %). Common activities included providing company for the care recipient (85.6 %), emotional support (74.5 %), and assistance with mobility (46.7 %). Youth reported a median of 2.5 h caregiving on weekdays and 4 h on weekend days, while families reported fewer hours (1.6 and 2.3, respectively). At the end of the school year, the sixth graders reported improvement in school (85.5 %), caregiving knowledge (88.5 %), and self-esteem (89.5 %). Slightly over 2 % of sixth graders participated in the CYP. While support services may mitigate the negative effects of the time spent by caregiving youth, more prospective research is needed to better define the true prevalence, tasks, and time spent caregiving among this subpopulation.

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Abbreviations

AACY:

American Association of Caregiving Youth

CYP:

Caregiving Youth Project

ADL:

Activities of daily living

IADL:

Instrumental activities of daily living

LOR:

Level of responsibility

IQR:

Interquartile range

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Author information

Author notes

  1. Raymen Rammy Assaf

    Present address: Children’s Hospital Los Angeles, Los Angeles, CA, USA

  2. Jennifer auf der Springe

    Present address: Harbor-UCLA Medical Center, Los Angeles, CA, USA

Authors and Affiliations

  1. University of Miami Miller School of Medicine, Miami, FL, USA

    Raymen Rammy Assaf & Jennifer auf der Springe

  2. American Association of Caregiving Youth, Boca Raton, FL, USA

    Connie Siskowski

  3. Division of Clinical Research, Department of Pediatrics, University of Miami Miller School of Medicine, Miami, FL, USA

    David A. Ludwig & M. Sunil Mathew

  4. Division of Biostatistics, Department of Public Health Sciences, University of Miami Miller School of Medicine, Miami, FL, USA

    David A. Ludwig

  5. University of Miami Miller School of Medicine Regional Medical Campus, 2500 N. Military Trail, Suite 260, Boca Raton, FL, 33431, USA

    Julia Belkowitz

Authors
  1. Raymen Rammy Assaf
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  2. Jennifer auf der Springe
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  3. Connie Siskowski
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Corresponding author

Correspondence to Julia Belkowitz.

Ethics declarations

This article has never been published elsewhere, though an oral presentation of a preliminary dataset was presented at the American Academy of Pediatrics Annual Meeting in 2014. Afterwards, this presentation was highlighted in the lay media and in an AAP Newsletter article in March, 2015.

This manuscript is not under consideration with any other journals, and will not be submitted to any other journals while under your review. The authors are responsible for the reported research. We have participated in the concept and design, analysis and interpretation of data, and drafting or revising of the manuscript. Each of the authors has approved the final manuscript.

Conflict of interest

Connie Siskowski, RN, Ph.D. is the Founder and President of the American Association of Caregiving Youth for which she is paid a salary. She is a donor to the organization, sits on its Board of Directors and is an in-kind contributor of services. Her contribution as an author is above and beyond her formal job description and there is no expectation of remuneration for this work. Julia Belkowitz, MD has been a donor to the American Association for Caregiving Youth. Dr. Belkowitz is a member of the Advisory Council for the Caregiving Youth Project. The American Association of Caregiving Youth is a 501c3 non-profit corporation. The other authors have no conflicts of interest to disclose or relevant financial relationships.

Research Involving Human Participants

The portion of study involving review of the Caregiving Youth Project records was approved by the University of Miami Institutional Review Board and permission was Granted by the AACY.

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Assaf, R.R., auf der Springe, J., Siskowski, C. et al. Participation Rates and Perceptions of Caregiving Youth Providing Home Health Care. J Community Health 41, 326–333 (2016). https://doi.org/10.1007/s10900-015-0100-7

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  • DOI: https://doi.org/10.1007/s10900-015-0100-7

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