Parents of Pediatric Solid Organ Transplant Recipients: Transition to Home and Chronic Illness Care
Studieoversikt
Status
Forhold
Detaljert beskrivelse
Parents of children that have received a heart, kidney, liver or lung transplant will be invited to participate in this protocol.
Involvement in this study entails completion of questionnaires at 4 separate time points. Parents will first complete questionnaires regarding discharge teaching, care coordination and readiness for hospital discharge on the day of discharge from the hospital. Parents will subsequently complete questionnaires at 3 weeks, 3 months and 6 months after discharge. The post discharge questionnaires assess coping, family management, adherence and utilization of healthcare resources.
Currently, no research has been conducted related to readiness for hospital discharge of a parent as the primary caregiver for a child with solid organ transplant or the sequential relationships between hospitalization care and the trajectory of post-discharge outcomes. This research will fill the gap in knowledge needed for care of solid organ transplant children and parents.
The ability to identify factors in the first year after transplant that are predictive of decreased coping and non-adherence affords an opportunity to develop nursing and health interventions that have significant implications for care decisions, as well as disease activity and health care costs.
Studietype
Registrering (Faktiske)
Kontakter og plasseringer
Studiesteder
-
-
Illinois
-
Chicago, Illinois, Forente stater, 60614
- Children's Memorial Hospital
-
-
Missouri
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St. Louis, Missouri, Forente stater, 63110
- St. Louis Children's Hospital
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Nebraska
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Omaha, Nebraska, Forente stater, 68114
- Children's Hospital and Medical Center of Nebraska
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North Carolina
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Charlotte, North Carolina, Forente stater, 28203
- Levine Children's Hospital
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Wisconsin
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Milwaukee, Wisconsin, Forente stater, 53146
- Children's Hospital of Wisconsin
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-
Deltakelseskriterier
Kvalifikasjonskriterier
Alder som er kvalifisert for studier
Tar imot friske frivillige
Kjønn som er kvalifisert for studier
Prøvetakingsmetode
Studiepopulasjon
Beskrivelse
Inclusion Criteria:
- the parent's child has undergone a heart, kidney, liver, lung or multivisceral transplant and is being discharged home from the hospital
- the parent is English speaking (tools being used have been validated for English participants only)
- the parent is 18 years of age or older
Exclusion Criteria:
- presence of significant communication or cognitive impairment on the part of the parent that would preclude completion of questionnaires based on self-report
- the child has already experienced the discharge to home transition after a previous transplant.
Studieplan
Hvordan er studiet utformet?
Designdetaljer
- Observasjonsmodeller: Kohort
- Tidsperspektiver: Potensielle
Kohorter og intervensjoner
Gruppe / Kohort |
|---|
|
Pediatric Solid Organ Transplant
Parents of pediatric solid organ transplant recipients
|
Hva måler studien?
Primære resultatmål
Resultatmål |
Tiltaksbeskrivelse |
Tidsramme |
|---|---|---|
|
Determine if discharge preparation has an effect on parent readiness for hospital discharge and if readiness for hospital discharge effects post-discharge outcomes following hospital discharge in parents of solid organ transplant recipients
Tidsramme: 2 years
|
Determine if discharge preparation (discharge teaching and care coordination) for parents of solid organ transplant children has an effect on: (1) short term discharge transition outcomes and transition to home-based care (measured at 3 weeks post-discharge) and,(2) longer term chronic care outcomes at 3 and 6 months post-discharge. |
2 years
|
Sekundære resultatmål
Resultatmål |
Tiltaksbeskrivelse |
Tidsramme |
|---|---|---|
|
Post transplant outcomes
Tidsramme: 2 years
|
Determine outcomes (parent coping, adherence, family management, and utilization of healthcare services) and the relationship between these outcomes, throughout the transition to chronic care management for families of solid organ transplant recipients at 3 weeks, 3 months and 6 months post-discharge.
|
2 years
|
Samarbeidspartnere og etterforskere
Sponsor
Samarbeidspartnere
Etterforskere
- Hovedetterforsker: Stacee Lerret, PhD(c), RN, Medical College of Wisconsin/Children's Hospital of Wisconsin
Studierekorddatoer
Studer hoveddatoer
Studiestart
Primær fullføring (Faktiske)
Studiet fullført (Faktiske)
Datoer for studieregistrering
Først innsendt
Først innsendt som oppfylte QC-kriteriene
Først lagt ut (Anslag)
Oppdateringer av studieposter
Sist oppdatering lagt ut (Anslag)
Siste oppdatering sendt inn som oppfylte QC-kriteriene
Sist bekreftet
Mer informasjon
Begreper knyttet til denne studien
Nøkkelord
Ytterligere relevante MeSH-vilkår
Andre studie-ID-numre
- CHW10/115,GC 1127
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