How could the clinicians assess the CHD adolescents' and their parents' needs? A preliminary theoretical basis underpinning a tool development Flocco Serena Francesca, RN a ; Magon Arianna, RN a ; Dellafiore Federica, RN, MSc, PhD(s) a ; Pittella Francesco, RN, MSc b ; Chessa Massimo, MD, PhD c ; Caruso Rosario, RN, MSc, PhD a a Health Professions Research and Development Unit, IRCCS Policlinico San Donato, Milan, Italy. b Nursing degree Course, IRCCS Policlinico San Donato, Milan, Italy. c Pediatric and Adult Congenital Heart Disease Center, IRCCS Policlinico San Donato, Milan, Italy. Literature currently shows a growing interest in understanding the peculiarities of both the patients with congenital heart disease (CHD) and their parents, whom are living the transition period from childhood to the adulthood, known as adolescents. However, considering the parents’ crucial role and some risky behaviors related to their duties (e.g., hyper- protection, fear), there are not yet available tools to specifically assess the needs of both the adolescent patients and their parents. Therefore, it could be strategic the identification of a clear theoretical framework that could guide a CHD-specific tool development to assess their needs. Thus, the aim of this study is to identify a theoretical framework, which will guide a future tool development. Introduction Material and methods The theoretical framework will be defined by a literature review (phase I) and a phenomenological study (phase II). The phase I was performed by a search on PubMed, Scopus, CINHAL and Web of Science, with the sub-aim to identify papers related to the lived experience of adolescents with CHD and their parents. The findings of the phase I represents the preliminary theoretical framework. The phase II (phenomenological study) will be conducted to validate the preliminary theoretical framework (phase I findings), customizing the same phase I findings to shape the semi-structured interviews for patients and parents, and using a purposive sampling. Results and discussion Seven papers were included (phase I), coming from a selection and assessment of 405 potentially relevant studies. These papers were analyzed, discussed and a qualitative meta-synthesis was performed. The meta-synthesis findings were 4 main contradictions that characterize the CHD adolescents’ parents experiences: ‘fear and uncertainty of the future versus positive coping strategies’; ‘parents hyper-responsibility and overprotection versus adolescents’ independence desire’; ‘desire to give support, but not to be supported’; ‘normality desire versus awareness to live with particular conditions’. Those domains represents the preliminary theoretical framework to test with phase II (not yet implemented). Our strategy to develop a CHD-specific scale for adolescents patients with CHD and their parents should help the delivery of a tailored care, where the needs assessment is helped by the use of a disease-specific tool. Conclusions Serena.[email protected] [email protected] POSTER N° 430 Main References 1.Hays L (2015) Transition to Adult Congenital Heart Disease Care: A Review. J Pediatr Nurs 30: e63-69. 2.Moceri P, Goossens E, Hascoet S, Checler C, Bonello B, et al. (2015) From adolescents to adults with congenital heart disease: the role of transition. Eur J Pediatr 174: 847-854. 3.Moons P, Van Deyk K, Marquet K, Raes E, De Bleser L, et al. (2005) Individual quality of life in adults with congenital heart disease: a paradigm shi . Eur Heart J 26: 298-307. 4.DellaFiore F, Pittella F, Flocco SF, Caruso MP, Bersani V, et al. (2016) What about life experiences of Congenital Heart Disease adolescents’ parents? A literature review and meta-synthesis. Cardiol Young 26: 180. 5.Iacona GM, Giamberti A, Abella RF (2016) Paediatric cardiac surgery in a peripheral European region: is a joint programme a safe alternative to regionalisation? Cardiol Young 18: 1-11. 7.Frigiola A, Moussaidi N, Giamberti A (2016) International cooperation in healthcare: model of IRCCS Policlinico San Donato and Bambini Cardiopatici nel Mondo Association for congenital heart diseases. Eur Hear J Suppl 18: 72-78. 8.Giamberti A, Varrica A, Pome G, Micheletti A, Negura D, et al. (2016) e care for adults with congenital heart disease: organization and function of a grown-up congenital heart disease unit. Eur Hear J Suppl 18: 15-18. 9.Caruso R, Pittella F, Zaghini F (2016) Development and validation of the Nursing Profession Self-E cacy Scale. Int Nurs Rev 63: 455-464. 10.Caruso R, Fida R, Sili A, Arrigoni C (2016) Towards an integrated model of nursing competence: an overview of the literature reviews and concept analysis. Prof Inferm 69: 35-43. 11.Flocco SF., Caruso R., Deallafiore F., Orlando A., Magon A., Giamberti A., Chessa M., Towards the Standardization of Transition Care Models for Adolescents with Congenital Heart Disease (CHD): A Perspective. J Clin Exp Cardiolog 8: 495
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How could the clinicians assess the CHD adolescents' and their parents' needs? A
preliminary theoretical basis underpinning a tool development
Flocco Serena Francesca, RNa; Magon Arianna, RNa; Dellafiore Federica, RN, MSc, PhD(s)a; Pittella Francesco, RN, MScb; Chessa Massimo, MD, PhDc; Caruso Rosario, RN, MSc, PhDa
a Health Professions Research and Development Unit, IRCCS Policlinico San Donato, Milan, Italy. b Nursing degree Course, IRCCS Policlinico San Donato, Milan, Italy.c Pediatric and Adult Congenital Heart Disease Center, IRCCS Policlinico San Donato, Milan, Italy.
Literature currently shows a growing interest in understanding the peculiarities of both the patients with congenital heart disease (CHD) and their parents, whom are living the transition period from childhood to the adulthood, known as adolescents. However, considering the parents’ crucial role and some risky behaviors related to their duties (e.g., hyper- protection, fear), there are not yet available tools to specifically assess the needs of both the adolescent patients and their parents. Therefore, it could be strategic the identification of a clear theoretical framework that could guide a CHD-specific tool development to assess their needs. Thus, the aim of this study is to identify a theoretical framework, which will guide a future tool development.
Introduction
Material and methods
The theoretical framework will be defined by a literature review (phase I) and a phenomenological study (phase II). The phase I was performed by a search on PubMed, Scopus, CINHAL and Web of Science, with the sub-aim to identify papers related to the lived experience of adolescents with CHD and their parents. The findings of the phase I represents the preliminary theoretical framework. The phase II (phenomenological study) will be conducted to validate the preliminary theoretical framework (phase I findings), customizing the same phase I findings to shape the semi-structured interviews for patients and parents, and using a purposive sampling.
Results and discussion
Seven papers were included (phase I), coming from a selection and assessment of 405 potentially relevant studies. These papers were analyzed, discussed and a qualitative meta-synthesis was performed. The meta-synthesis findings were 4 main contradictions that characterize the CHD adolescents’ parents experiences: ‘fear and uncertainty of the future versus positive coping strategies’; ‘parents hyper-responsibility and overprotection versus adolescents’ independence desire’; ‘desire to give support, but not to be supported’; ‘normality desire versus awareness to live with particular conditions’. Those domains represents the preliminary theoretical framework to test with phase II (not yet implemented).
Our strategy to develop a CHD-specific scale for adolescents patients with CHD and their parents should help the delivery of a tailored care, where the needs assessment is helped by the use of a disease-specific tool.
Conclusions
[email protected]@grupposandonato.it POSTER N° 430
Main References 1.Hays L (2015) Transition to Adult Congenital Heart Disease Care: A Review. J Pediatr Nurs 30: e63-69.2.Moceri P, Goossens E, Hascoet S, Checler C, Bonello B, et al. (2015) From adolescents to adults with congenital heart disease: therole of transition. Eur J Pediatr 174: 847-854.3.Moons P, Van Deyk K, Marquet K, Raes E, De Bleser L, et al. (2005) Individual quality of life in adults with congenital heart disease:a paradigm shi . Eur Heart J 26: 298-307.4.DellaFiore F, Pittella F, Flocco SF, Caruso MP, Bersani V, et al. (2016) What about life experiences of Congenital Heart Diseaseadolescents’ parents? A literature review and meta-synthesis. Cardiol Young 26: 180.5.Iacona GM, Giamberti A, Abella RF (2016) Paediatric cardiac surgery in a peripheral European region: is a joint programme a safealternative to regionalisation? Cardiol Young 18: 1-11.7.Frigiola A, Moussaidi N, Giamberti A (2016) International cooperation in healthcare: model of IRCCS Policlinico San Donato andBambini Cardiopatici nel Mondo Association for congenital heart diseases. Eur Hear J Suppl 18: 72-78.8.Giamberti A, Varrica A, Pome G, Micheletti A, Negura D, et al. (2016) e care for adults with congenital heart disease: organizationand function of a grown-up congenital heart disease unit. Eur Hear J Suppl 18: 15-18. 9.Caruso R, Pittella F, Zaghini F (2016) Development and validation of the Nursing Profession Self-E cacy Scale. Int Nurs Rev 63:455-464. 10.Caruso R, Fida R, Sili A, Arrigoni C (2016) Towards an integrated model of nursing competence: an overview of the literaturereviews and concept analysis. Prof Inferm 69: 35-43. 11.Flocco SF., Caruso R., Deallafiore F., Orlando A., Magon A., Giamberti A., Chessa M., Towards the Standardization of Transition Care
Models for Adolescents with Congenital Heart Disease (CHD): A Perspective. J Clin Exp Cardiolog 8: 495
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