Self-care in children and young people with complex chronic conditions: a qualitative study using Emotional Text Mining
ObjectivesTo explore: (1) self-care behaviors in children and young people (range: 6 months–24 years) with complex chronic conditions, characterized by the diagnosis of a severe chronic condition, substantial family-identified needs, functional limitations associated with technology dependence, and...
| Main Authors: | , , , , , , , , , , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
Frontiers Media S.A.
2023-07-01
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| Series: | Frontiers in Pediatrics |
| Subjects: | |
| Online Access: | https://www.frontiersin.org/articles/10.3389/fped.2023.1170268/full |
| _version_ | 1797770321101586432 |
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| author | Giuseppina Spitaletta Valentina Biagioli Francesca Greco Rachele Mascolo Annachiara Liburdi Giulia Manzi Orsola Gawronski Riccardo Ricci Emanuela Tiozzo Ercole Vellone Teresa Grimaldi Capitello Michele Salata Massimiliano Raponi Immacolata Dall’Oglio Self-care CYP Study Group Self-care CYP Study Group Valentina Vanzi Daniele Gargano Alessandra Querciati Marco Roberti Manuel Pomponi Anna Portanova Tommaso Renzetti Caterina Offidani |
| author_facet | Giuseppina Spitaletta Valentina Biagioli Francesca Greco Rachele Mascolo Annachiara Liburdi Giulia Manzi Orsola Gawronski Riccardo Ricci Emanuela Tiozzo Ercole Vellone Teresa Grimaldi Capitello Michele Salata Massimiliano Raponi Immacolata Dall’Oglio Self-care CYP Study Group Self-care CYP Study Group Valentina Vanzi Daniele Gargano Alessandra Querciati Marco Roberti Manuel Pomponi Anna Portanova Tommaso Renzetti Caterina Offidani |
| author_sort | Giuseppina Spitaletta |
| collection | DOAJ |
| description | ObjectivesTo explore: (1) self-care behaviors in children and young people (range: 6 months–24 years) with complex chronic conditions, characterized by the diagnosis of a severe chronic condition, substantial family-identified needs, functional limitations associated with technology dependence, and intensive use of healthcare services; (2) the contribution to self-care of family members and other persons involved in the child's health and daily life context (e.g., health professionals and teachers), and (3) the principal factors that might have influenced the self-care process associated with developmental age.MethodsA qualitative descriptive study was conducted in an Italian academic tertiary pediatric hospital between September 2020 and May 2021. Overall, 25 focus groups and 7 online interviews were conducted via videoconferencing. Textual data were analyzed using Emotional Text Mining to identify three levels of communication: the factors, the main themes (clusters), and the sub-themes.ResultsA total of 104 participants were enrolled, including 27 patients with complex chronic conditions (12 males, mean age = 11.1 ± 4.40), 33 parents, 6 siblings, 33 health professionals, and 5 teachers. Participants described the process of self-care through four main factors: “self-care”, “external settings”, “family”, and “management”. Five clusters (themes) were identified: (1) Self-care management (device; consulting); (2) Shift of agency (influencing factors; parents; school); (3) Self-care support (normal life and personal development; multidisciplinary support); (4) Daily self-care maintenance/monitoring; (5) Treatment adherence. Self-care management was mostly relevant for parents of children aged between 6 months and 3 years.ConclusionThe self-care process varies according to the needs related to the specific developmental age and the evolution of the clinical condition over time. The contribution of the family, health professionals, and social networks is fundamental for adequate self-care. To help families manage the unstable condition of their children at home, it is necessary to strengthen support networks implement home care, and ensure continuity of care. |
| first_indexed | 2024-03-12T21:20:40Z |
| format | Article |
| id | doaj.art-39b48677efbb42c9bfc36fc57cc8cf98 |
| institution | Directory Open Access Journal |
| issn | 2296-2360 |
| language | English |
| last_indexed | 2024-03-12T21:20:40Z |
| publishDate | 2023-07-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Pediatrics |
| spelling | doaj.art-39b48677efbb42c9bfc36fc57cc8cf982023-07-28T18:14:29ZengFrontiers Media S.A.Frontiers in Pediatrics2296-23602023-07-011110.3389/fped.2023.11702681170268Self-care in children and young people with complex chronic conditions: a qualitative study using Emotional Text MiningGiuseppina Spitaletta0Valentina Biagioli1Francesca Greco2Rachele Mascolo3Annachiara Liburdi4Giulia Manzi5Orsola Gawronski6Riccardo Ricci7Emanuela Tiozzo8Ercole Vellone9Teresa Grimaldi Capitello10Michele Salata11Massimiliano Raponi12Immacolata Dall’Oglio13Self-care CYP Study Group14Self-care CYP Study Group15Valentina VanziDaniele GarganoAlessandra QuerciatiMarco RobertiManuel PomponiAnna PortanovaTommaso RenzettiCaterina OffidaniProfessional Development, Continuing Education and Research Service, Bambino Gesù Children’s Hospital, IRCCS, Rome, ItalyProfessional Development, Continuing Education and Research Service, Bambino Gesù Children’s Hospital, IRCCS, Rome, ItalyDepartment of Languages and Literatures, Communication, Education and Society, University of Udine, Udine, ItalyPediatric Semi-Intensive Care Area/Unit, Bambino Gesù Children’s Hospital, IRCCS, Rome, ItalyProfessional Development, Continuing Education and Research Service, Bambino Gesù Children’s Hospital, IRCCS, Rome, ItalyProfessional Development, Continuing Education and Research Service, Bambino Gesù Children’s Hospital, IRCCS, Rome, ItalyProfessional Development, Continuing Education and Research Service, Bambino Gesù Children’s Hospital, IRCCS, Rome, ItalyProfessional Development, Continuing Education and Research Service, Bambino Gesù Children’s Hospital, IRCCS, Rome, ItalyProfessional Development, Continuing Education and Research Service, Bambino Gesù Children’s Hospital, IRCCS, Rome, ItalyDepartment of Biomedicine and Prevention, University of Rome “Tor Vergata”, Rome, ItalyUnit of Clinical Psychology, Bambino Gesù Children’s Hospital, IRCCS, Rome, ItalyPaediatric Palliative Care Unit, Bambino Gesù Children’s Hospital, IRCCS, Rome, ItalyMedical Directorate, Bambino Gesù Children's Hospital, IRCCS, Rome, ItalyProfessional Development, Continuing Education and Research Service, Bambino Gesù Children’s Hospital, IRCCS, Rome, ItalyProfessional Development, Continuing Education and Research Service, Bambino Gesù Children’s Hospital, IRCCS, Rome, ItalyBambino Gesù Children's Hospital, IRCCS, Rome, ItalyObjectivesTo explore: (1) self-care behaviors in children and young people (range: 6 months–24 years) with complex chronic conditions, characterized by the diagnosis of a severe chronic condition, substantial family-identified needs, functional limitations associated with technology dependence, and intensive use of healthcare services; (2) the contribution to self-care of family members and other persons involved in the child's health and daily life context (e.g., health professionals and teachers), and (3) the principal factors that might have influenced the self-care process associated with developmental age.MethodsA qualitative descriptive study was conducted in an Italian academic tertiary pediatric hospital between September 2020 and May 2021. Overall, 25 focus groups and 7 online interviews were conducted via videoconferencing. Textual data were analyzed using Emotional Text Mining to identify three levels of communication: the factors, the main themes (clusters), and the sub-themes.ResultsA total of 104 participants were enrolled, including 27 patients with complex chronic conditions (12 males, mean age = 11.1 ± 4.40), 33 parents, 6 siblings, 33 health professionals, and 5 teachers. Participants described the process of self-care through four main factors: “self-care”, “external settings”, “family”, and “management”. Five clusters (themes) were identified: (1) Self-care management (device; consulting); (2) Shift of agency (influencing factors; parents; school); (3) Self-care support (normal life and personal development; multidisciplinary support); (4) Daily self-care maintenance/monitoring; (5) Treatment adherence. Self-care management was mostly relevant for parents of children aged between 6 months and 3 years.ConclusionThe self-care process varies according to the needs related to the specific developmental age and the evolution of the clinical condition over time. The contribution of the family, health professionals, and social networks is fundamental for adequate self-care. To help families manage the unstable condition of their children at home, it is necessary to strengthen support networks implement home care, and ensure continuity of care.https://www.frontiersin.org/articles/10.3389/fped.2023.1170268/fullself careself-managementchronic diseasepediatricsadolescentyoung adult |
| spellingShingle | Giuseppina Spitaletta Valentina Biagioli Francesca Greco Rachele Mascolo Annachiara Liburdi Giulia Manzi Orsola Gawronski Riccardo Ricci Emanuela Tiozzo Ercole Vellone Teresa Grimaldi Capitello Michele Salata Massimiliano Raponi Immacolata Dall’Oglio Self-care CYP Study Group Self-care CYP Study Group Valentina Vanzi Daniele Gargano Alessandra Querciati Marco Roberti Manuel Pomponi Anna Portanova Tommaso Renzetti Caterina Offidani Self-care in children and young people with complex chronic conditions: a qualitative study using Emotional Text Mining Frontiers in Pediatrics self care self-management chronic disease pediatrics adolescent young adult |
| title | Self-care in children and young people with complex chronic conditions: a qualitative study using Emotional Text Mining |
| title_full | Self-care in children and young people with complex chronic conditions: a qualitative study using Emotional Text Mining |
| title_fullStr | Self-care in children and young people with complex chronic conditions: a qualitative study using Emotional Text Mining |
| title_full_unstemmed | Self-care in children and young people with complex chronic conditions: a qualitative study using Emotional Text Mining |
| title_short | Self-care in children and young people with complex chronic conditions: a qualitative study using Emotional Text Mining |
| title_sort | self care in children and young people with complex chronic conditions a qualitative study using emotional text mining |
| topic | self care self-management chronic disease pediatrics adolescent young adult |
| url | https://www.frontiersin.org/articles/10.3389/fped.2023.1170268/full |
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