Partnering with Families to Validate Questionnaires Assessing Unmet Needs of Children, Adolescents, and Parents/Caregivers at the End of Cancer Treatment
Review TypePeer-review: Single Blind
Repository Posting Date2017-08-30T16:13:25Z
Author(s)Conway, Mary; King, Courtney; Hart, Leigh; Needham, Andrew; Holden, Elizabeth; Ruiz, Tiffany; Lucas, Ruth
Author DetailsMary Conway, MSN, RN, CPHON, Mu Chapter; Courtney King, RN, CPON; Leigh Hart BSN, RN, CPON; Andrew Needham, BSN, RN; Elizabeth Holden, BSN, RN, CPHON; Tiffany Ruiz, BSN, RN; Ruth Lucas PhD, RN, Mu Chapter
Lead Author Sigma AffliationMu
Level of EvidenceOther
Research ApproachQualitative Research
CINAHL HeadingsInstrument Validation; Needs Assessment; Cancer Patients; Cancer Patients--In Infancy and Childhood; Cancer Patients--In Adolescence; Caregivers; Parents; Parents--Psychosocial Factors
Transitioning off cancer treatment is a momentous occasion for pediatric patients and their families, but also brings anxiety and fear, suggesting that there are unmet needs/gaps in services provided at the end of treament. After examining the process of transitioning off cancer treatment, the hematology/oncology nursing research workforce group wished to determine if the current practices at our institution are meeting the needs of our patients and their parents/caregivers.
The experiences and needs of pediatric cancer patients and their parents/caregivers at the end of treatment, as reported in the literature, are predominantly descriptive studies with small sample sizes, restricting generalizability of results. Additionally, there is limited research evaluating existing programs and services at the end of treament. The "Coming off Treatment" questionnaire (COT) (Nagel, et al., 2002) was developed to assess issues important to parents of children completing cancer therpy. Although this questionnaire has been utilized in two studies to date, no psychometric information based on the COT has been published.
The purpose of this study was to adapt the COT into End of Treatment (EOT) questionnaires for both children with cancer and their parent/caregivers, and to validate these EOT questionnaires.
Funder(s)The DAISY Foundation
DescriptionThis research was funded by a J. Patrick Barnes Nursing Research Grant, provided by the DAISY Foundation
Conference NameBuilding Brighter Futures: Advances in Pediatric and Neonatal Care 2017
Conference HostConnecticut Children's Medical Center
Conference LocationGroton, Connecticut, USA
Date of Publication8/30/2017
NotesThis work has been approved through a peer-review process prior to its posting in the Virginia Henderson Global Nursing e-Repository.
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