Characterizing Lone Parenting: A Multi-institutional Pilot Study of the Perceptions of Support and Perceived Stress of Lone Parents of Children With Cancer
14. desember 2019 oppdatert 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.
Studieoversikt
Status
Fullført
Forhold
Detaljert beskrivelse
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
Observasjonsmessig
Registrering (Faktiske)
275
Kontakter og plasseringer
Denne delen inneholder kontaktinformasjon for de som utfører studien, og informasjon om hvor denne studien blir utført.
Studiesteder
-
-
Alabama
-
Birmingham, Alabama, Forente stater
- University of Alabama at Birmingham
-
-
California
-
Long Beach, California, Forente stater
- Miller Children's Hospital
-
-
Maryland
-
Bethesda, Maryland, Forente stater, 20892
- National Institutes of Health Clinical Center, 9000 Rockville Pike
-
-
Massachusetts
-
Boston, Massachusetts, Forente stater, 02115
- Dana Farber Cancer Institute
-
-
Mississippi
-
Jackson, Mississippi, Forente stater
- University of Mississippi Medical Center
-
-
New York
-
New York, New York, Forente stater, 10021
- Memorial Sloan Kettering Cancer Center
-
-
Ohio
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Akron, Ohio, Forente stater
- Akron Children's Hospital
-
-
Oklahoma
-
Stillwater, Oklahoma, Forente stater
- Oklahoma State University
-
-
Tennessee
-
Memphis, Tennessee, Forente stater, 38105
- St. Jude Children's Research Hospital
-
-
Wisconsin
-
Milwaukee, Wisconsin, Forente stater
- Medical College of Wisconsin
-
-
Deltakelseskriterier
Forskere ser etter personer som passer til en bestemt beskrivelse, kalt kvalifikasjonskriterier. Noen eksempler på disse kriteriene er en persons generelle helsetilstand eller tidligere behandlinger.
Kvalifikasjonskriterier
Alder som er kvalifisert for studier
18 år til 65 år (Voksen, Eldre voksen)
Tar imot friske frivillige
Nei
Kjønn som er kvalifisert for studier
Alle
Beskrivelse
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
Studieplan
Denne delen gir detaljer om studieplanen, inkludert hvordan studien er utformet og hva studien måler.
Hvordan er studiet utformet?
Designdetaljer
- Tidsperspektiver: Potensielle
Samarbeidspartnere og etterforskere
Det er her du vil finne personer og organisasjoner som er involvert i denne studien.
Publikasjoner og nyttige lenker
Den som er ansvarlig for å legge inn informasjon om studien leverer frivillig disse publikasjonene. Disse kan handle om alt relatert til studiet.
Generelle publikasjoner
- 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.
Studierekorddatoer
Disse datoene sporer fremdriften for innsending av studieposter og sammendragsresultater til ClinicalTrials.gov. Studieposter og rapporterte resultater gjennomgås av National Library of Medicine (NLM) for å sikre at de oppfyller spesifikke kvalitetskontrollstandarder før de legges ut på det offentlige nettstedet.
Studer hoveddatoer
Studiestart
6. august 2009
Primær fullføring
7. desember 2022
Studiet fullført
8. mars 2018
Datoer for studieregistrering
Først innsendt
29. august 2009
Først innsendt som oppfylte QC-kriteriene
29. august 2009
Først lagt ut (Anslag)
1. september 2009
Oppdateringer av studieposter
Sist oppdatering lagt ut (Faktiske)
17. desember 2019
Siste oppdatering sendt inn som oppfylte QC-kriteriene
14. desember 2019
Sist bekreftet
8. mars 2018
Mer informasjon
Begreper knyttet til denne studien
Nøkkelord
Andre studie-ID-numre
- 090194
- 09-M-0194
Legemiddel- og utstyrsinformasjon, studiedokumenter
Studerer et amerikansk FDA-regulert medikamentprodukt
Nei
Studerer et amerikansk FDA-regulert enhetsprodukt
Nei
produkt produsert i og eksportert fra USA
Nei
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