Characterizing Lone Parenting: A Multi-institutional Pilot Study of the Perceptions of Support and Perceived Stress of Lone Parents of Children With Cancer
14 de diciembre de 2019 actualizado por: 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.
Descripción general del estudio
Estado
Terminado
Condiciones
Descripción detallada
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).
Tipo de estudio
De observación
Inscripción (Actual)
275
Contactos y Ubicaciones
Esta sección proporciona los datos de contacto de quienes realizan el estudio e información sobre dónde se lleva a cabo este estudio.
Ubicaciones de estudio
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Alabama
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Birmingham, Alabama, Estados Unidos
- University of Alabama at Birmingham
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California
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Long Beach, California, Estados Unidos
- Miller Children's Hospital
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Maryland
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Bethesda, Maryland, Estados Unidos, 20892
- National Institutes of Health Clinical Center, 9000 Rockville Pike
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Massachusetts
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Boston, Massachusetts, Estados Unidos, 02115
- Dana Farber Cancer Institute
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Mississippi
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Jackson, Mississippi, Estados Unidos
- University of Mississippi Medical Center
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New York
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New York, New York, Estados Unidos, 10021
- Memorial Sloan Kettering Cancer Center
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Ohio
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Akron, Ohio, Estados Unidos
- Akron Children's Hospital
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Oklahoma
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Stillwater, Oklahoma, Estados Unidos
- Oklahoma State University
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Tennessee
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Memphis, Tennessee, Estados Unidos, 38105
- St. Jude Children's Research Hospital
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Wisconsin
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Milwaukee, Wisconsin, Estados Unidos
- Medical College of Wisconsin
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-
Criterios de participación
Los investigadores buscan personas que se ajusten a una determinada descripción, denominada criterio de elegibilidad. Algunos ejemplos de estos criterios son el estado de salud general de una persona o tratamientos previos.
Criterio de elegibilidad
Edades elegibles para estudiar
18 años a 65 años (Adulto, Adulto Mayor)
Acepta Voluntarios Saludables
No
Géneros elegibles para el estudio
Todos
Descripción
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 de estudios
Esta sección proporciona detalles del plan de estudio, incluido cómo está diseñado el estudio y qué mide el estudio.
¿Cómo está diseñado el estudio?
Detalles de diseño
- Perspectivas temporales: Futuro
Colaboradores e Investigadores
Aquí es donde encontrará personas y organizaciones involucradas en este estudio.
Patrocinador
Publicaciones y enlaces útiles
La persona responsable de ingresar información sobre el estudio proporciona voluntariamente estas publicaciones. Estos pueden ser sobre cualquier cosa relacionada con el estudio.
Publicaciones Generales
- 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.
Fechas de registro del estudio
Estas fechas rastrean el progreso del registro del estudio y los envíos de resultados resumidos a ClinicalTrials.gov. Los registros del estudio y los resultados informados son revisados por la Biblioteca Nacional de Medicina (NLM) para asegurarse de que cumplan con los estándares de control de calidad específicos antes de publicarlos en el sitio web público.
Fechas importantes del estudio
Inicio del estudio
6 de agosto de 2009
Finalización primaria
7 de diciembre de 2022
Finalización del estudio
8 de marzo de 2018
Fechas de registro del estudio
Enviado por primera vez
29 de agosto de 2009
Primero enviado que cumplió con los criterios de control de calidad
29 de agosto de 2009
Publicado por primera vez (Estimar)
1 de septiembre de 2009
Actualizaciones de registros de estudio
Última actualización publicada (Actual)
17 de diciembre de 2019
Última actualización enviada que cumplió con los criterios de control de calidad
14 de diciembre de 2019
Última verificación
8 de marzo de 2018
Más información
Términos relacionados con este estudio
Palabras clave
Otros números de identificación del estudio
- 090194
- 09-M-0194
Información sobre medicamentos y dispositivos, documentos del estudio
Estudia un producto farmacéutico regulado por la FDA de EE. UU.
No
Estudia un producto de dispositivo regulado por la FDA de EE. UU.
No
producto fabricado y exportado desde los EE. UU.
No
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