Definitions of resilience and resilience resource use as described by adults with congenital heart disease
Structured Abstract: Background: Adult congenital heart disease (ACHD) is a lifelong illness that presents ongoing challenges to quality of life. Fostering personal resilience resources to sustain well-being can enhance patients’ psychosocial health. Objective: We aimed to describe patients’ resili...
| Main Authors: | , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Elsevier
2023-06-01
|
| Series: | International Journal of Cardiology Congenital Heart Disease |
| Subjects: | |
| Online Access: | http://www.sciencedirect.com/science/article/pii/S2666668523000095 |
| _version_ | 1797818679821336576 |
|---|---|
| author | Jill M. Steiner Erin Abu-Rish Blakeney Andrea Corage Baden Vea Freeman Joyce Yi-Frazier J. Randall Curtis Ruth A. Engelberg Abby R. Rosenberg |
| author_facet | Jill M. Steiner Erin Abu-Rish Blakeney Andrea Corage Baden Vea Freeman Joyce Yi-Frazier J. Randall Curtis Ruth A. Engelberg Abby R. Rosenberg |
| author_sort | Jill M. Steiner |
| collection | DOAJ |
| description | Structured Abstract: Background: Adult congenital heart disease (ACHD) is a lifelong illness that presents ongoing challenges to quality of life. Fostering personal resilience resources to sustain well-being can enhance patients’ psychosocial health. Objective: We aimed to describe patients’ resilience experiences: how they understand, develop, and utilize resilience resources in managing ACHD. Methods: We conducted a qualitative study of patients with ACHD. Participants were recruited using maximum variation sampling. Individual, semi-structured interviews were conducted June 2020 to August 2021. We queried approaches to managing ACHD-related stress and experiences with resilience and analyzed responses with thematic analysis. Results: Participant (N = 25) median age was 32 years (range 22–44); 52% identified as female and 72% non-Hispanic white. Participants’ anatomic ACHD was moderate (56%) or complex (44%); physiologically, 76% were functional class C or D. Participants described various resilience resources, which map to an established resilience framework: 1) internal resources: maintaining positivity, self-directed activity, and setting goals; 2) external resources: social support; 3) existential resources: purpose, gratitude, and cultivating health. Even among participants who reported feeling unfamiliar (8/25) with the term “resilience,” all participants shared experiences reflecting resilience developed while living with ACHD. Conclusion: ACHD-relevant resilience resources may help patients and clinicians navigate ACHD-related stress and promote psychosocial well-being. |
| first_indexed | 2024-03-13T09:11:33Z |
| format | Article |
| id | doaj.art-fa061ae0fbbf4606a0b02346df5cdda0 |
| institution | Directory Open Access Journal |
| issn | 2666-6685 |
| language | English |
| last_indexed | 2024-03-13T09:11:33Z |
| publishDate | 2023-06-01 |
| publisher | Elsevier |
| record_format | Article |
| series | International Journal of Cardiology Congenital Heart Disease |
| spelling | doaj.art-fa061ae0fbbf4606a0b02346df5cdda02023-05-27T04:26:47ZengElsevierInternational Journal of Cardiology Congenital Heart Disease2666-66852023-06-0112100447Definitions of resilience and resilience resource use as described by adults with congenital heart diseaseJill M. Steiner0Erin Abu-Rish Blakeney1Andrea Corage Baden2Vea Freeman3Joyce Yi-Frazier4J. Randall Curtis5Ruth A. Engelberg6Abby R. Rosenberg7Division of Cardiology, Department of Medicine & Cambia Palliative Care Center of Excellence, University of Washington, 1959 NE Pacific St., Seattle, WA, 98195, USA; Corresponding author. 1959 NE Pacific St., HSB C502 Box 356422, Division of Cardiology, Seattle, Washington, 98195, USA.Department of Biobehavioral Nursing and Health Informatics, School of Nursing, University of Washington, 1959 NE Pacific St., Seattle, WA, 98195, USADivision of General Internal Medicine, Department of Medicine, University of Washington, 1959 NE Pacific St., Seattle, WA, 98195, USADivision of Cardiology, Department of Medicine, University of Washington, 1959 NE Pacific St., Seattle, WA, 98195, USADivision of Hematology/Oncology, Department of Pediatrics, Palliative Care and Resilience Lab, Seattle Children's Research Institute, 1920 Terry Ave, Seattle, WA, 98101, USADivision of Pulmonary, Critical Care and Sleep Medicine, Department of Medicine & Cambia Palliative Care Center of Excellence, University of Washington, Harborview Medical Center, 325 9th Ave, Seattle, WA, 98104, USADepartment of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute & Department of Pediatrics, Harvard Medical School, 450 Brookline Ave, Boston, MA, 02215, USADepartment of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute & Department of Pediatrics, Harvard Medical School, 450 Brookline Ave, Boston, MA, 022155, USAStructured Abstract: Background: Adult congenital heart disease (ACHD) is a lifelong illness that presents ongoing challenges to quality of life. Fostering personal resilience resources to sustain well-being can enhance patients’ psychosocial health. Objective: We aimed to describe patients’ resilience experiences: how they understand, develop, and utilize resilience resources in managing ACHD. Methods: We conducted a qualitative study of patients with ACHD. Participants were recruited using maximum variation sampling. Individual, semi-structured interviews were conducted June 2020 to August 2021. We queried approaches to managing ACHD-related stress and experiences with resilience and analyzed responses with thematic analysis. Results: Participant (N = 25) median age was 32 years (range 22–44); 52% identified as female and 72% non-Hispanic white. Participants’ anatomic ACHD was moderate (56%) or complex (44%); physiologically, 76% were functional class C or D. Participants described various resilience resources, which map to an established resilience framework: 1) internal resources: maintaining positivity, self-directed activity, and setting goals; 2) external resources: social support; 3) existential resources: purpose, gratitude, and cultivating health. Even among participants who reported feeling unfamiliar (8/25) with the term “resilience,” all participants shared experiences reflecting resilience developed while living with ACHD. Conclusion: ACHD-relevant resilience resources may help patients and clinicians navigate ACHD-related stress and promote psychosocial well-being.http://www.sciencedirect.com/science/article/pii/S2666668523000095Adult congenital heart diseaseResiliencePsychosocialWell-beingQualitative |
| spellingShingle | Jill M. Steiner Erin Abu-Rish Blakeney Andrea Corage Baden Vea Freeman Joyce Yi-Frazier J. Randall Curtis Ruth A. Engelberg Abby R. Rosenberg Definitions of resilience and resilience resource use as described by adults with congenital heart disease International Journal of Cardiology Congenital Heart Disease Adult congenital heart disease Resilience Psychosocial Well-being Qualitative |
| title | Definitions of resilience and resilience resource use as described by adults with congenital heart disease |
| title_full | Definitions of resilience and resilience resource use as described by adults with congenital heart disease |
| title_fullStr | Definitions of resilience and resilience resource use as described by adults with congenital heart disease |
| title_full_unstemmed | Definitions of resilience and resilience resource use as described by adults with congenital heart disease |
| title_short | Definitions of resilience and resilience resource use as described by adults with congenital heart disease |
| title_sort | definitions of resilience and resilience resource use as described by adults with congenital heart disease |
| topic | Adult congenital heart disease Resilience Psychosocial Well-being Qualitative |
| url | http://www.sciencedirect.com/science/article/pii/S2666668523000095 |
| work_keys_str_mv | AT jillmsteiner definitionsofresilienceandresilienceresourceuseasdescribedbyadultswithcongenitalheartdisease AT erinaburishblakeney definitionsofresilienceandresilienceresourceuseasdescribedbyadultswithcongenitalheartdisease AT andreacoragebaden definitionsofresilienceandresilienceresourceuseasdescribedbyadultswithcongenitalheartdisease AT veafreeman definitionsofresilienceandresilienceresourceuseasdescribedbyadultswithcongenitalheartdisease AT joyceyifrazier definitionsofresilienceandresilienceresourceuseasdescribedbyadultswithcongenitalheartdisease AT jrandallcurtis definitionsofresilienceandresilienceresourceuseasdescribedbyadultswithcongenitalheartdisease AT ruthaengelberg definitionsofresilienceandresilienceresourceuseasdescribedbyadultswithcongenitalheartdisease AT abbyrrosenberg definitionsofresilienceandresilienceresourceuseasdescribedbyadultswithcongenitalheartdisease |