Identifying metrics of success for transitional care practices in childhood cancer survivorship: A qualitative interview study of parents
Abstract Background Survivor‐focused care for adolescent and young adult (AYA) childhood cancer survivors (CCS) often involves their parents. Recognizing the importance of parents in the ongoing care of CCS, our study sought to identify key aspects of a successful transition for CCS from pediatric‐...
| Main Authors: | , , , , , , , |
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| Format: | Article |
| Language: | English |
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Wiley
2021-09-01
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| Series: | Cancer Medicine |
| Subjects: | |
| Online Access: | https://doi.org/10.1002/cam4.4164 |
| _version_ | 1819135477128626176 |
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| author | Karim Thomas Sadak Milki Gemeda Michelle C. Grafelman Taiwo O. Aremu Joseph P. Neglia David R. Freyer Eileen Harwood Jude Mikal |
| author_facet | Karim Thomas Sadak Milki Gemeda Michelle C. Grafelman Taiwo O. Aremu Joseph P. Neglia David R. Freyer Eileen Harwood Jude Mikal |
| author_sort | Karim Thomas Sadak |
| collection | DOAJ |
| description | Abstract Background Survivor‐focused care for adolescent and young adult (AYA) childhood cancer survivors (CCS) often involves their parents. Recognizing the importance of parents in the ongoing care of CCS, our study sought to identify key aspects of a successful transition for CCS from pediatric‐ to adult‐centered care from the parent perspective. Methods We conducted qualitative interviews with 26 parents of CCS who were receiving care in the long‐term follow‐up (LTFU) clinic at a single institution. We used a semi‐structured interview protocol with the parents and conducted a thematic content analysis. Results Using a constant comparison approach, data revealed three primary themes regarding parents’ perspectives toward ensuring a seamless transition from pediatric‐ to adult‐centered follow‐up care: (1) the transition needs to include seamless communication between all involved parties, (2) survivors need to demonstrate sufficient health care self‐efficacy in order to achieve a successful transition, and (3) the survivor‐focused care should include support for survivors’ overall well‐being, including financial and health insurance literacy. Conclusions For parents of AYA CCS, the optimal pediatric to adult care transition model should include mechanisms that facilitate communication between parents, CCS, and survivor‐focused providers while also supporting self‐efficacy and financial literacy as it relates to health insurance. |
| first_indexed | 2024-12-22T10:19:42Z |
| format | Article |
| id | doaj.art-e8853d2d4d4d42c3a64001b9de136be8 |
| institution | Directory Open Access Journal |
| issn | 2045-7634 |
| language | English |
| last_indexed | 2024-12-22T10:19:42Z |
| publishDate | 2021-09-01 |
| publisher | Wiley |
| record_format | Article |
| series | Cancer Medicine |
| spelling | doaj.art-e8853d2d4d4d42c3a64001b9de136be82022-12-21T18:29:39ZengWileyCancer Medicine2045-76342021-09-0110186239624810.1002/cam4.4164Identifying metrics of success for transitional care practices in childhood cancer survivorship: A qualitative interview study of parentsKarim Thomas Sadak0Milki Gemeda1Michelle C. Grafelman2Taiwo O. Aremu3Joseph P. Neglia4David R. Freyer5Eileen Harwood6Jude Mikal7University of Minnesota Masonic Cancer Center University of Minnesota Masonic Children’s Hospital Minneapolis Minnesota USAUniversity of Minnesota Minneapolis Minnesota USAUniversity of Minnesota Medical School Minneapolis Minnesota USAUniversity of Minnesota Masonic Cancer Center University of Minnesota Masonic Children’s Hospital Minneapolis Minnesota USAUniversity of Minnesota Masonic Cancer Center University of Minnesota Masonic Children’s Hospital Minneapolis Minnesota USAChildren's Center for Cancer and Blood Diseases Children's Hospital Los Angeles Los Angeles California USADivision of Epidemiology & Community Health School of Public Health University of Minnesota Minneapolis Minnesota USADivision of Health Policy and Management School of Public Health University of Minnesota Minneapolis Minnesota USAAbstract Background Survivor‐focused care for adolescent and young adult (AYA) childhood cancer survivors (CCS) often involves their parents. Recognizing the importance of parents in the ongoing care of CCS, our study sought to identify key aspects of a successful transition for CCS from pediatric‐ to adult‐centered care from the parent perspective. Methods We conducted qualitative interviews with 26 parents of CCS who were receiving care in the long‐term follow‐up (LTFU) clinic at a single institution. We used a semi‐structured interview protocol with the parents and conducted a thematic content analysis. Results Using a constant comparison approach, data revealed three primary themes regarding parents’ perspectives toward ensuring a seamless transition from pediatric‐ to adult‐centered follow‐up care: (1) the transition needs to include seamless communication between all involved parties, (2) survivors need to demonstrate sufficient health care self‐efficacy in order to achieve a successful transition, and (3) the survivor‐focused care should include support for survivors’ overall well‐being, including financial and health insurance literacy. Conclusions For parents of AYA CCS, the optimal pediatric to adult care transition model should include mechanisms that facilitate communication between parents, CCS, and survivor‐focused providers while also supporting self‐efficacy and financial literacy as it relates to health insurance.https://doi.org/10.1002/cam4.4164Childhood cancer survivor transition qualitative parent |
| spellingShingle | Karim Thomas Sadak Milki Gemeda Michelle C. Grafelman Taiwo O. Aremu Joseph P. Neglia David R. Freyer Eileen Harwood Jude Mikal Identifying metrics of success for transitional care practices in childhood cancer survivorship: A qualitative interview study of parents Cancer Medicine Childhood cancer survivor transition qualitative parent |
| title | Identifying metrics of success for transitional care practices in childhood cancer survivorship: A qualitative interview study of parents |
| title_full | Identifying metrics of success for transitional care practices in childhood cancer survivorship: A qualitative interview study of parents |
| title_fullStr | Identifying metrics of success for transitional care practices in childhood cancer survivorship: A qualitative interview study of parents |
| title_full_unstemmed | Identifying metrics of success for transitional care practices in childhood cancer survivorship: A qualitative interview study of parents |
| title_short | Identifying metrics of success for transitional care practices in childhood cancer survivorship: A qualitative interview study of parents |
| title_sort | identifying metrics of success for transitional care practices in childhood cancer survivorship a qualitative interview study of parents |
| topic | Childhood cancer survivor transition qualitative parent |
| url | https://doi.org/10.1002/cam4.4164 |
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