Characterizing Lone Parenting: A Multi-institutional Pilot Study of the Perceptions of Support and Perceived Stress of Lone Parents of Children With Cancer
14 décembre 2019 mis à jour par: 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.
Aperçu de l'étude
Statut
Complété
Les conditions
Description détaillée
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).
Type d'étude
Observationnel
Inscription (Réel)
275
Contacts et emplacements
Cette section fournit les coordonnées de ceux qui mènent l'étude et des informations sur le lieu où cette étude est menée.
Lieux d'étude
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Alabama
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Birmingham, Alabama, États-Unis
- University of Alabama at Birmingham
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California
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Long Beach, California, États-Unis
- Miller Children's Hospital
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Maryland
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Bethesda, Maryland, États-Unis, 20892
- National Institutes of Health Clinical Center, 9000 Rockville Pike
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Massachusetts
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Boston, Massachusetts, États-Unis, 02115
- Dana Farber Cancer Institute
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Mississippi
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Jackson, Mississippi, États-Unis
- University of Mississippi Medical Center
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New York
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New York, New York, États-Unis, 10021
- Memorial Sloan Kettering Cancer Center
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Ohio
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Akron, Ohio, États-Unis
- Akron Children's Hospital
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Oklahoma
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Stillwater, Oklahoma, États-Unis
- Oklahoma State University
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Tennessee
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Memphis, Tennessee, États-Unis, 38105
- St. Jude Children's Research Hospital
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Wisconsin
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Milwaukee, Wisconsin, États-Unis
- Medical College of Wisconsin
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Critères de participation
Les chercheurs recherchent des personnes qui correspondent à une certaine description, appelée critères d'éligibilité. Certains exemples de ces critères sont l'état de santé général d'une personne ou des traitements antérieurs.
Critère d'éligibilité
Âges éligibles pour étudier
18 ans à 65 ans (Adulte, Adulte plus âgé)
Accepte les volontaires sains
Non
Sexes éligibles pour l'étude
Tout
La description
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
Plan d'étude
Cette section fournit des détails sur le plan d'étude, y compris la façon dont l'étude est conçue et ce que l'étude mesure.
Comment l'étude est-elle conçue ?
Détails de conception
- Perspectives temporelles: Éventuel
Collaborateurs et enquêteurs
C'est ici que vous trouverez les personnes et les organisations impliquées dans cette étude.
Publications et liens utiles
La personne responsable de la saisie des informations sur l'étude fournit volontairement ces publications. Il peut s'agir de tout ce qui concerne l'étude.
Publications générales
- 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.
Dates d'enregistrement des études
Ces dates suivent la progression des dossiers d'étude et des soumissions de résultats sommaires à ClinicalTrials.gov. Les dossiers d'étude et les résultats rapportés sont examinés par la Bibliothèque nationale de médecine (NLM) pour s'assurer qu'ils répondent à des normes de contrôle de qualité spécifiques avant d'être publiés sur le site Web public.
Dates principales de l'étude
Début de l'étude
6 août 2009
Achèvement primaire
7 décembre 2022
Achèvement de l'étude
8 mars 2018
Dates d'inscription aux études
Première soumission
29 août 2009
Première soumission répondant aux critères de contrôle qualité
29 août 2009
Première publication (Estimation)
1 septembre 2009
Mises à jour des dossiers d'étude
Dernière mise à jour publiée (Réel)
17 décembre 2019
Dernière mise à jour soumise répondant aux critères de contrôle qualité
14 décembre 2019
Dernière vérification
8 mars 2018
Plus d'information
Termes liés à cette étude
Mots clés
Autres numéros d'identification d'étude
- 090194
- 09-M-0194
Informations sur les médicaments et les dispositifs, documents d'étude
Étudie un produit pharmaceutique réglementé par la FDA américaine
Non
Étudie un produit d'appareil réglementé par la FDA américaine
Non
produit fabriqué et exporté des États-Unis.
Non
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