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Characterizing Lone Parenting: A Multi-institutional Pilot Study of the Perceptions of Support and Perceived Stress of Lone Parents of Children With Cancer

14 december 2019 uppdaterad av: National Institute of Mental Health (NIMH)

Characterizing Lone Parenting: A Multi-Institutional Pilot Study of the Perceptions of Support and Perceived Stress of Lone Parents of Children With Cancer

This study will describe the perceptions of support and distress outcomes of single/lone parents of a child with cancer.

Background:

  • Parents and families of children with chronic illnesses have stressors, including financial stress, role strains, separations, and interruptions in daily routines and plans for the future. All of these experiences may lead directly and indirectly to parental stress.
  • The number of families headed by single or lone parents is increasing. Little work has been done to better understand if the needs of parents who are providing care for a child on their own differ from parents who do not classify themselves as lone. Identifying parents who may need additional support within a pediatric oncology setting is very important so that appropriate support is provided.

Objectives:

- To better understand the social, emotional, and practical effects of lone parents on children with cancer.

Eligibility:

  • All parents whose child has been diagnosed with cancer between 6 and 18 months before enrolling on the study.
  • Participants must be able to speak and read English

Design:

  • Parents will be asked to complete a questionnaire during one of their child s clinic or hospital visits.
  • The questionnaire will ask about the parenting experience since the child was diagnosed with cancer. It will ask about the support the parent has received from family and friends since the diagnosis.
  • The questionnaire will take approximately 20 minutes to complete.

Studieöversikt

Status

Avslutad

Betingelser

Detaljerad beskrivning

Background:

  • Research examining the potential impact of childhood chronic illness on parents and families has delineated a myriad of stressors that parents may experience, including financial stress, role strains, separations, interruptions in daily routines and plans for the future, and general uncertainty regarding the child s prognosis.
  • All of these possible experiences may lead directly and indirectly to anxiety, depression, posttraumatic-stress, hopelessness, and feelings of loss of control in parents and families.
  • The number of families headed by single, or lone parents has increased significantly, with 3 in 10 children now living in single parent homes.
  • It is not known whether distress is greater for parents who are lone parents.
  • Lone-parent families earn on average only 55% of what married-parent families earn, and are four times more likely to live in poverty.
  • It is unclear how lone parents trying to navigate the complex needs of maintaining a home, family, and a chronically ill child adapt to these challenges.
  • It is also unclear how many parents who check single on a standardized forced choice questionnaire format consider themselves to be lone when it comes to the experience of caring for their child with cancer.

Objective:

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  • Aim 1: To define and characterize lone parents
  • Aim 2: To describe perceptions of social support and how they relate to lone and non-lone parenting
  • Aim 3: To identify distress outcomes in parents of children with cancer who identify themselves as being lone when it comes to the experience of caring for a child with cancer

Study Population:

English and Spanish speaking parents of a child (1through 17 years) with a malignancy, diagnosed 6-18 months before recruitment will be invited to participate in this study.

Design:

-This is a pilot, exploratory study designed to describe the perceptions of support and distress outcomes of single/lone parents of a child with cancer. Participants will be administered a Lone Parent Support Questionnaire designed for this study. The study will be completed in one visit (<30mins).

Studietyp

Observationell

Inskrivning (Faktisk)

275

Kontakter och platser

Det här avsnittet innehåller kontaktuppgifter för dem som genomför studien och information om var denna studie genomförs.

Studieorter

    • Alabama
      • Birmingham, Alabama, Förenta staterna
        • University of Alabama at Birmingham
    • California
      • Long Beach, California, Förenta staterna
        • Miller Children's Hospital
    • Maryland
      • Bethesda, Maryland, Förenta staterna, 20892
        • National Institutes of Health Clinical Center, 9000 Rockville Pike
    • Massachusetts
      • Boston, Massachusetts, Förenta staterna, 02115
        • Dana Farber Cancer Institute
    • Mississippi
      • Jackson, Mississippi, Förenta staterna
        • University of Mississippi Medical Center
    • New York
      • New York, New York, Förenta staterna, 10021
        • Memorial Sloan Kettering Cancer Center
    • Ohio
      • Akron, Ohio, Förenta staterna
        • Akron Children's Hospital
    • Oklahoma
      • Stillwater, Oklahoma, Förenta staterna
        • Oklahoma State University
    • Tennessee
      • Memphis, Tennessee, Förenta staterna, 38105
        • St. Jude Children's Research Hospital
    • Wisconsin
      • Milwaukee, Wisconsin, Förenta staterna
        • Medical College of Wisconsin

Deltagandekriterier

Forskare letar efter personer som passar en viss beskrivning, så kallade behörighetskriterier. Några exempel på dessa kriterier är en persons allmänna hälsotillstånd eller tidigare behandlingar.

Urvalskriterier

Åldrar som är berättigade till studier

18 år till 65 år (Vuxen, Äldre vuxen)

Tar emot friska volontärer

Nej

Kön som är behöriga för studier

Allt

Beskrivning

  • INCLUSION CRITERIA:

    1. Parents or primary guardians of children (ages 6 months through 17 years) with any malignancy whose child is 6-18 months post-diagnosis.
    2. Ability to give informed consent.
    3. English or Spanish speaking

EXCLUSION CRITERIA:

  1. Severe psychological distress which - in the judgment of the Principal or Associate Investigators at each respective collection site- would compromise the participant s ability to understand the questionnaire or is likely to interfere with the study procedures or results.
  2. Relapse of malignancy

Studieplan

Det här avsnittet ger detaljer om studieplanen, inklusive hur studien är utformad och vad studien mäter.

Hur är studien utformad?

Designdetaljer

  • Tidsperspektiv: Blivande

Samarbetspartners och utredare

Det är här du hittar personer och organisationer som är involverade i denna studie.

Publikationer och användbara länkar

Den som ansvarar för att lägga in information om studien tillhandahåller frivilligt dessa publikationer. Dessa kan handla om allt som har med studien att göra.

Studieavstämningsdatum

Dessa datum spårar framstegen för inlämningar av studieposter och sammanfattande resultat till ClinicalTrials.gov. Studieposter och rapporterade resultat granskas av National Library of Medicine (NLM) för att säkerställa att de uppfyller specifika kvalitetskontrollstandarder innan de publiceras på den offentliga webbplatsen.

Studera stora datum

Studiestart

6 augusti 2009

Primärt slutförande

7 december 2022

Avslutad studie

8 mars 2018

Studieregistreringsdatum

Först inskickad

29 augusti 2009

Först inskickad som uppfyllde QC-kriterierna

29 augusti 2009

Första postat (Uppskatta)

1 september 2009

Uppdateringar av studier

Senaste uppdatering publicerad (Faktisk)

17 december 2019

Senaste inskickade uppdateringen som uppfyllde QC-kriterierna

14 december 2019

Senast verifierad

8 mars 2018

Mer information

Termer relaterade till denna studie

Andra studie-ID-nummer

  • 090194
  • 09-M-0194

Läkemedels- och apparatinformation, studiedokument

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Nej

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produkt tillverkad i och exporterad från U.S.A.

Nej

Denna information hämtades direkt från webbplatsen clinicaltrials.gov utan några ändringar. Om du har några önskemål om att ändra, ta bort eller uppdatera dina studieuppgifter, vänligen kontakta register@clinicaltrials.gov. Så snart en ändring har implementerats på clinicaltrials.gov, kommer denna att uppdateras automatiskt även på vår webbplats .

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