Rodrigo López1, Patricia Frangini2, Muriel Ramírez2, Patricia M Valenzuela2, Claudia Terrazas2, Carolina A Pérez3, Evelyn Borchert4, Manuel Trachsel5. 1. Division of Anesthesia, Pontificia Universidad Católica de Chile, Santiago, Chile Institute of Biomedical Ethics, Universität Zürich, Zürich, Switzerland ralopez@uc.cl. 2. Division of Pediatrics, Pontificia Universidad Católica de Chile, Santiago, Chile. 3. School of Medicine, Pontificia Universidad Católica de Chile, Santiago, Chile. 4. Division of Anesthesia, Pontificia Universidad Católica de Chile, Santiago, Chile. 5. Institute of Biomedical Ethics, Universität Zürich, Zürich, Switzerland.
Abstract
BACKGROUND: Parents of children having congenital heart diseases (CHDs) develop symptoms of depression, distress, anxiety, and hopelessness more frequently than parents of healthy children. Associated with the described symptoms, parents may experience a lack of control and disempowerment, which decreases the parent's agency, a construct from development studies, and which may have negative consequences on adherence to treatment. The primary aim of this study was to assess the effect of medical treatment on well-being and agency in parents of children having CHDs, in Chile, and to compare it with reference values. METHODS: Forty parents of children having CHDs (before surgery and before hospital discharge) and 115 parents of healthy children were surveyed. The following scales were applied to this population: the General Health Questionnaire, the Basic Psychological Needs Scales, the Self-Determination Scale, the Beck Hopelessness Scale, and a socioeconomic survey. RESULTS: Children's surgery decreased parents' hopelessness (3.13 ± 0.35 and 2.18 ± 0.40, P = .04), and no significant differences were found in the remaining scales. Parents of children with CHDs scored significantly worse than parents of healthy children on the General Health Questionnaire (13.82 ± 1.03 and 9.21 ± 0.64, P = .001). This difference was not found using the others scales. CONCLUSION: Children's surgery has a positive effect on parent's hopelessness, but it does not have any impact on their well-being nor agency. Parents of children with CHD have a decreased well-being compared to parents of healthy children but have a similar level of agency. Socioeconomic level and gender may influence this association.
BACKGROUND: Parents of children having congenital heart diseases (CHDs) develop symptoms of depression, distress, anxiety, and hopelessness more frequently than parents of healthy children. Associated with the described symptoms, parents may experience a lack of control and disempowerment, which decreases the parent's agency, a construct from development studies, and which may have negative consequences on adherence to treatment. The primary aim of this study was to assess the effect of medical treatment on well-being and agency in parents of children having CHDs, in Chile, and to compare it with reference values. METHODS: Forty parents of children having CHDs (before surgery and before hospital discharge) and 115 parents of healthy children were surveyed. The following scales were applied to this population: the General Health Questionnaire, the Basic Psychological Needs Scales, the Self-Determination Scale, the Beck Hopelessness Scale, and a socioeconomic survey. RESULTS:Children's surgery decreased parents' hopelessness (3.13 ± 0.35 and 2.18 ± 0.40, P = .04), and no significant differences were found in the remaining scales. Parents of children with CHDs scored significantly worse than parents of healthy children on the General Health Questionnaire (13.82 ± 1.03 and 9.21 ± 0.64, P = .001). This difference was not found using the others scales. CONCLUSION:Children's surgery has a positive effect on parent's hopelessness, but it does not have any impact on their well-being nor agency. Parents of children with CHD have a decreased well-being compared to parents of healthy children but have a similar level of agency. Socioeconomic level and gender may influence this association.
Authors: Rodrigo López Barreda; Alonso Guerrero; Juan Cristóbal de la Cuadra; Manuela Scotoni; Wilbaldo Salas; Fernando Baraona; Francisca Arancibia; Polentzi Uriarte Journal: PLoS One Date: 2020-10-08 Impact factor: 3.240
Authors: Rebecca K Delaney; Nelangi M Pinto; Elissa M Ozanne; Louisa A Stark; Mandy L Pershing; Alistair Thorpe; Holly O Witteman; Praveen Thokala; Linda M Lambert; Lisa M Hansen; Tom H Greene; Angela Fagerlin Journal: BMJ Open Date: 2021-12-10 Impact factor: 3.006
Authors: Chris Feudtner; Russell T Nye; Jackelyn Y Boyden; Katherine E Schwartz; Emilie R Korn; Aaron G Dewitt; Amy T Waldman; Lisa A Schwartz; Yuming A Shen; Michael Manocchia; Rui Xiao; Blyth T Lord; Douglas L Hill Journal: JAMA Netw Open Date: 2021-12-01