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 bijgewerkt door: 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.
Studie Overzicht
Toestand
Voltooid
Conditie
Gedetailleerde beschrijving
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).
Studietype
Observationeel
Inschrijving (Werkelijk)
275
Contacten en locaties
In dit gedeelte vindt u de contactgegevens van degenen die het onderzoek uitvoeren en informatie over waar dit onderzoek wordt uitgevoerd.
Studie Locaties
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Alabama
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Birmingham, Alabama, Verenigde Staten
- University of Alabama at Birmingham
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California
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Long Beach, California, Verenigde Staten
- Miller Children's Hospital
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Maryland
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Bethesda, Maryland, Verenigde Staten, 20892
- National Institutes of Health Clinical Center, 9000 Rockville Pike
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Massachusetts
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Boston, Massachusetts, Verenigde Staten, 02115
- Dana Farber Cancer Institute
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Mississippi
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Jackson, Mississippi, Verenigde Staten
- University of Mississippi Medical Center
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New York
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New York, New York, Verenigde Staten, 10021
- Memorial Sloan Kettering Cancer Center
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Ohio
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Akron, Ohio, Verenigde Staten
- Akron Children's Hospital
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Oklahoma
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Stillwater, Oklahoma, Verenigde Staten
- Oklahoma State University
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Tennessee
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Memphis, Tennessee, Verenigde Staten, 38105
- St. Jude Children's Research Hospital
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Wisconsin
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Milwaukee, Wisconsin, Verenigde Staten
- Medical College of Wisconsin
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Deelname Criteria
Onderzoekers zoeken naar mensen die aan een bepaalde beschrijving voldoen, de zogenaamde geschiktheidscriteria. Enkele voorbeelden van deze criteria zijn iemands algemene gezondheidstoestand of eerdere behandelingen.
Geschiktheidscriteria
Leeftijden die in aanmerking komen voor studie
18 jaar tot 65 jaar (Volwassen, Oudere volwassene)
Accepteert gezonde vrijwilligers
Nee
Geslachten die in aanmerking komen voor studie
Allemaal
Beschrijving
INCLUSION CRITERIA:
- Parents or primary guardians of children (ages 6 months through 17 years) with any malignancy whose child is 6-18 months post-diagnosis.
- Ability to give informed consent.
- English or Spanish speaking
EXCLUSION CRITERIA:
- 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.
- Relapse of malignancy
Studie plan
Dit gedeelte bevat details van het studieplan, inclusief hoe de studie is opgezet en wat de studie meet.
Hoe is de studie opgezet?
Ontwerpdetails
- Tijdsperspectieven: Prospectief
Medewerkers en onderzoekers
Hier vindt u mensen en organisaties die betrokken zijn bij dit onderzoek.
Publicaties en nuttige links
De persoon die verantwoordelijk is voor het invoeren van informatie over het onderzoek stelt deze publicaties vrijwillig ter beschikking. Dit kan gaan over alles wat met het onderzoek te maken heeft.
Algemene publicaties
- Barakat LP, Kazak AE, Meadows AT, Casey R, Meeske K, Stuber ML. Families surviving childhood cancer: a comparison of posttraumatic stress symptoms with families of healthy children. J Pediatr Psychol. 1997 Dec;22(6):843-59. doi: 10.1093/jpepsy/22.6.843.
- Barrera M, D'Agostino NM, Gibson J, Gilbert T, Weksberg R, Malkin D. Predictors and mediators of psychological adjustment in mothers of children newly diagnosed with cancer. Psychooncology. 2004 Sep;13(9):630-41. doi: 10.1002/pon.765.
- Brown RT, Wiener L, Kupst MJ, Brennan T, Behrman R, Compas BE, David Elkin T, Fairclough DL, Friebert S, Katz E, Kazak AE, Madan-Swain A, Mansfield N, Mullins LL, Noll R, Patenaude AF, Phipps S, Sahler OJ, Sourkes B, Zeltzer L. Single parents of children with chronic illness: an understudied phenomenon. J Pediatr Psychol. 2008 May;33(4):408-21. doi: 10.1093/jpepsy/jsm079. Epub 2007 Sep 29.
Studie record data
Deze datums volgen de voortgang van het onderzoeksdossier en de samenvatting van de ingediende resultaten bij ClinicalTrials.gov. Studieverslagen en gerapporteerde resultaten worden beoordeeld door de National Library of Medicine (NLM) om er zeker van te zijn dat ze voldoen aan specifieke kwaliteitscontrolenormen voordat ze op de openbare website worden geplaatst.
Bestudeer belangrijke data
Studie start
6 augustus 2009
Primaire voltooiing
7 december 2022
Studie voltooiing
8 maart 2018
Studieregistratiedata
Eerst ingediend
29 augustus 2009
Eerst ingediend dat voldeed aan de QC-criteria
29 augustus 2009
Eerst geplaatst (Schatting)
1 september 2009
Updates van studierecords
Laatste update geplaatst (Werkelijk)
17 december 2019
Laatste update ingediend die voldeed aan QC-criteria
14 december 2019
Laatst geverifieerd
8 maart 2018
Meer informatie
Termen gerelateerd aan deze studie
Trefwoorden
Andere studie-ID-nummers
- 090194
- 09-M-0194
Informatie over medicijnen en apparaten, studiedocumenten
Bestudeert een door de Amerikaanse FDA gereguleerd geneesmiddel
Nee
Bestudeert een door de Amerikaanse FDA gereguleerd apparaatproduct
Nee
product vervaardigd in en geëxporteerd uit de V.S.
Nee
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