Child-Centered Care: A Qualitative Study Exploring Pediatric Hospitalization Through Children’s Perspectives
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Design and Sample
2.2. Data Collection
2.3. Data Analysis
2.4. Trustworthiness
2.5. Theoretical Framework and Research Team Statements
2.6. Ethical Considerations
3. Results
3.1. Participants Profile
3.2. Thematic Findings
3.3. Emotions and Feelings
3.3.1. Fear of Death and Unfamiliar Hospital Setting
“When I thought about it for a while, I was afraid that I might die”.(Participant 1)
“When I went into the hospital, I didn’t know what was going to happen, if I would be away from home for many hours, and especially if it would hurt”.(Participant 2)
“Being hospitalized is still sad because you’re in pain, without friends, and even though your mom is there, you’re so tired that she’s sad too. But… well, some nurses try to help us; some smile at me and squeeze my hand. There was one who sometimes read me a story”.(Participant 6)
3.3.2. Anxiety About Medical Equipment
“I was very nervous there were so many wires, and they frightened me because I didn’t know what they were for”.(Participant 10)
3.3.3. Sensory Overload
“Sometimes I saw many colours, clowns, strange shapes, and sometimes I saw nothing. Nobody helped me; someone scolded me for not moving because the wires were pulling, and I didn’t want to do anything”.(Participant 4)
3.3.4. Loneliness and Isolation:
“I was alone in the bed with many people around, but I felt lonely. I saw how the doctors and nurses spoke kindly to my mom, but the worst part was that my siblings couldn’t come in to see me”.(Participant 6)
3.4. Experiences of Pain and Discomfort
3.4.1. Disturbances from Hospital Environment
“Sometimes I was falling asleep or something, and then it would start beeping a lot; there was so much noise, I didn’t like it. It was on the night I was in intensive care, which was the worst because I was in a lot of pain”.(Participant 5)
“Well, most of the time, I slept because there wasn’t much to do, and there was no one to talk to. They were always very busy, and it was tough to sleep because of the lights and constant adjustments, which was unbearable”.(Participant 7)
3.4.2. Medical Procedures and Improper Positioning
“The tube in my chest was very heavy”.(Participant 7)
“Yes, it also hurt because when I wasn’t in a good position, I would start feeling horrible pain, and until it ended, I couldn’t speak or see well. But when the nurse came in and talked to me, I felt better, I don’t know why, but that’s the truth”.(Participant 8)
“I think they were coming in all the time, but I didn’t know what they were doing. It hurt, then it didn’t, but I didn’t understand anything, I didn’t see my parents, and I didn’t know what they were doing to me”.(Participant 2)
3.5. Interaction and Communication with Medical Staff
3.5.1. Communication Inability
“I couldn’t tell anyone anything because of the tube, and sometimes I needed to talk. I always wanted to hold hands, but I couldn’t say it. And with that tube, I felt pain. To communicate, I made signs, and those machines tortured me”.(Participant 9)
3.5.2. Lack of Information
“I think they were always coming in, but I didn’t know what they were doing. It hurt, then it didn’t, but I didn’t understand anything, I didn’t see my parents, and I didn’t know what they were doing to me”.(Participant 2)
“One understands that there are issues, but it would be good if someone could explain how everything is going”.(Participant 3)
3.5.3. Positive Interactions with Nurses
“My drawing is of a nurse because I really liked how the nurses treated me and the others. They were always attentive, if my fluid was running out, if I cried, or if I was misbehaving with my mom. They always had something to say to keep me from crying or when I was in pain”.(Participant 5)
“I saw how the nurses, when their shift ended, explained very well to the other nurses what they needed to do and talked about me and my family, but they did it with affection, I think”.(Participant 4)
4. Discussion
4.1. Limitations and Strengths
4.2. Implications Practice
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Public Involvement Statement
Guidelines and Standards Statement
Use of Artificial Intelligence
Acknowledgments
Conflicts of Interest
References
- Demetriou, E.A.; Boulton, K.A.; Bowden, M.R.; Guastella, A.J. Adjustment and homesickness in hospitalised children: A systematic review. Clin. Psychol. Rev. 2024, 110, 102431. [Google Scholar] [CrossRef] [PubMed]
- Ball, J.W.; Bindler, R.M.; Cowen, K.J. Principles of Pediatric Nursing: Caring for Children, 1st ed.; Financial Times Prentice Hall: Lincoln, UK, 2017. [Google Scholar]
- Jepsen, S.L.; Haahr, A.; Eg, M.; Jørgensen, L.B. Coping with the unfamiliar: How do children cope with hospitalization in relation to acute and/or critical illness? A qualitative metasynthesis. J. Child Health Care 2019, 23, 534–550. [Google Scholar] [CrossRef]
- Özlem Öztürk, S.; Aysel, T. Investigation of the Fear of 7-18-Year-Old Hospitalized Children for Illness and Hospital Author (s). J. Relig. Health 2018, 58, 1011–1023. [Google Scholar] [CrossRef] [PubMed]
- Díaz-Rodríguez, M.; Alcántara-Rubio, L.; Aguilar-García, D.; Pérez-Muñoz, C.; Carretero-Bravo, J.; Puertas-Cristóbal, E. The Effect of Play on Pain and Anxiety in Children in the Field of Nursing: A Systematic Review. J. Pediatr. Nurs. 2021, 61, 15–22. [Google Scholar] [CrossRef]
- Oliver, R.L. A Cognitive Model of the Antecedents and Consequences of Satisfaction Decisions. J. Mark. Res. 1980, 17, 460–469. [Google Scholar] [CrossRef]
- Bronfenbrenner, U. Ecological Systems Theory. In Encyclopedia of Psychology; Kazdin, A.E., Ed.; An American Psychological Association Publication: Washington, DC, USA, 2000; Volume 3, pp. 129–133. [Google Scholar]
- Lulgjuraj, D.; Maneval, R.E. Unaccompanied Hospitalized Children: An Integrative Review. J. Pediatr. Nurs. 2021, 56, 38–46. [Google Scholar] [CrossRef] [PubMed]
- Piaget, J. Piaget’s theory of cognitive development. Child Cogn. Dev. Essent. Read. 2000, 2, 33–47. [Google Scholar]
- Calişir, H.; Sarikaya Karabudak, S.; Karataş, P.; Kahraman Berberoğlu, B. Participation in Care Decisions of Hospitalized Children with Chronic Illness: Views of Children and Parents. Hemşirelik Bilim. Derg. 2022, 5, 63–71. [Google Scholar] [CrossRef]
- Demirbağ, S.; Ergin, D. ’A voice of children: I would like a hospital just for children—Children’s perspectives on hospitalization: A phenomenological study. J. Pediatr. Nurs. 2024, 77, e125–e131. [Google Scholar] [CrossRef]
- de Man, M.A.; Segers, E.W.; Schappin, R.; van der Leeden, K.; Wösten-van Asperen, R.M.; Breur, H.; de Weerth, C.; van den Hoogen, A. Parental experiences of their infant’s hospital admission undergoing cardiac surgery: A systematic review. Acta Paediatr. 2021, 110, 1730–1740. [Google Scholar] [CrossRef]
- Nabors, L.; Liddle, M. Perceptions of Hospitalization by Children with Chronic Illnesses and Siblings. J. Child Fam. Stud. 2017, 26, 1681–1691. [Google Scholar] [CrossRef]
- Delvecchio, E.; Salcuni, S.; Lis, A.; Germani, A.; Di Riso, D. Hospitalized Children: Anxiety, Coping Strategies, and Pretend Play. Front. Public Heal. 2019, 7, 250. [Google Scholar] [CrossRef]
- Mott, S. The Pediatric Bill of Rights. J. Pediatr. Nurs. 2014, 29, 709–711. [Google Scholar] [CrossRef] [PubMed]
- Al-Sheikh Hassan, M. The use of Husserl’s phenomenology in nursing research: A discussion paper. J. Adv. Nurs. 2023, 79, 3160–3169. [Google Scholar] [CrossRef]
- Braun, V.; Clarke, V. Using thematic analysis in psychology. Qual. Res. Psychol. 2006, 3, 77–101. [Google Scholar] [CrossRef]
- Guba, E.G. Criteria for assessing the trustworthiness of naturalistic inquiries. ECTJ 1981, 29, 75–91. [Google Scholar] [CrossRef]
- O’Brien, B.C.; Harris, I.B.; Beckman, T.J.; Reed, D.A.; Cook, D.A. Standards for reporting qualitative research: A synthesis of recommendations. Acad. Med. 2014, 89, 1245–1251. [Google Scholar] [CrossRef]
- Carter, N.; Bryant-Lukosius, D.; Dicenso, A.; Blythe, J.; Neville, A.J. The use of triangulation in qualitative research. Oncol. Nurs. Soc. 2014, 41, 545–547. [Google Scholar] [CrossRef]
- Chan, Z.C.; Fung, Y.; Chien, W. Bracketing in Phenomenology: Only Undertaken in the Data Collection and Analysis Process. Qual. Rep. 2013, 18, 1–9. [Google Scholar] [CrossRef]
- World Medical Association. Declaration of Helsinki: Ethical Principles for Medical Research Involving Human Subjects. JAMA 2013, 310, 2191–2194. [Google Scholar] [CrossRef]
- Lima, L.N.; de Oliveira Carvalho, E.; da Silva, V.B.; Melo, M.C. Self-reported experience of hospitalized children: An integrative review. Rev. Bras. Enferm. 2020, 73 (Suppl. 4), e20180740. [Google Scholar] [CrossRef] [PubMed]
- Hsiao, Y.H.; Chung, H.T.; Wang, J.K.; Mu, P.F.; Chen, S.W.; Shu, Y.M.; Chen, C.W. Subjective experience of parent–child relationship in adolescents with congenital heart disease: A qualitative study. J. Pediatr. Nurs. 2024, 77, 204–211. [Google Scholar] [CrossRef] [PubMed]
- Petronio-Coia, B.J.; Schwartz-Barcott, D.A. Description of approachable nurses: An exploratory study, the voice of the hospitalized child. J. Pediatr. Nurs. 2020, 54, 18–23. [Google Scholar] [CrossRef] [PubMed]
- Çakirer Çalbayram, N.; Altundağ, S.; Aydin, B. Investigating Children’s Perception of Nurses Through Their Drawings. Clin. Nurs. Res. 2018, 27, 984–1001. [Google Scholar] [CrossRef]
- Coleman, L.N.; Wathen, K.; Waldron, M.; Mason, J.J.; Houston, S.; Wang, Y.; Hinds, P.S. The child’s voice in satisfaction with hospital care. J. Pediatr. Nurs. 2020, 50, 113–120. [Google Scholar] [CrossRef]
- Gao, Y.; Xu, Y.; Liu, N.; Fan, L. Effectiveness of virtual reality intervention on reducing the pain, anxiety and fear of needle-related procedures in paediatric patients: A systematic review and meta-analysis. J. Adv. Nurs. 2023, 79, 15–30. [Google Scholar] [CrossRef]
- Thomas, C.; Plunkett, A. Care of the child and family in paediatric intensive care. Paediatr. Child Health 2017, 27, 143–145. [Google Scholar] [CrossRef]
- Kwame, A.; Petrucka, P.M. A literature-based study of patient-centered care and communication in nurse-patient interactions: Barriers, facilitators, and the way forward. BMC Nurs. 2021, 20, 158. [Google Scholar] [CrossRef]
- Bell, J.; Condren, M. Communication Strategies for Empowering and Protecting Children. J. Pediatr. Pharmacol. Ther. 2016, 21, 176–184. [Google Scholar] [CrossRef]
- Ricci, L.; Villegente, J.; Loyal, D.; Ayav, C.; Kivits, J.; Rat, A.C. Tailored patient therapeutic educational interventions: A patient-centred communication model. Health Expect. 2022, 25, 276–289. [Google Scholar] [CrossRef]
- Lulgjuraj, D.; Maneval, R.E. A phenomenological study exploring pediatric hospitalization: The voices of accompanied and unaccompanied hospitalized children. J. Pediatr. Nurs. 2023, 70, 68–78. [Google Scholar] [CrossRef] [PubMed]
- Gripko, M.; Joseph, A.; Mohammadi Gorji, S. Effects of the physical environment on children and families in hospital-based emergency departments: A systematic literature review. J. Environ. Psychol. 2023, 86, 68–78. [Google Scholar] [CrossRef] [PubMed]
- Stragliotto Bazzan, J.; Marten Milbrath, V.; Souza da Silva, M.; Tavares, D.H.; Alves dos Santos, B.; Maschendorf Thomaz, M. Family experiences during child hospitalization: An integrative Review. Rev. De Pesqui. Cuid. E Fundam. 2020, 12, 1179–1186. [Google Scholar] [CrossRef]
- Koukourikos, K.; Tzeha, L.; Pantelidou, P.; Tsaloglidou, A. The importance of play during hospitalization of children. Mater. Sociomed. 2015. 27, 438–441. [CrossRef]
- Gjærde, L.K.; Hybschmann, J.; Dybdal, D.; Topperzer, M.K.; Schrøder, M.A.; Gibson, J.L.; Ramchandani, P.; Ginsberg, E.I.; Ottesen, B.; Frandsen, T.L.; et al. Play interventions for paediatric patients in hospital: A scoping review. BMJ Open 2021, 11, e051957. [Google Scholar] [CrossRef] [PubMed]
- Verena Thoma, M.; Belleau, E.; Ford, J.D.; Cruz, D. Developmental trauma: Conceptual framework, associated risks and comorbidities, and evaluation and treatment. Front. Psychiatry 2022, 13, 800687. [Google Scholar] [CrossRef]
- Varni, J.W.; Seid, M.; Kurtin, P.S. PedsQLTM 4.0: Reliability and validity of the Pediatric Quality of Life InventoryTM Version 4.0 Generic Core Scales in healthy and patient populations. Med. Care 2001, 39, 800–812. [Google Scholar] [CrossRef]
- Clatworthy, S.; Simon, K.; Tiedeman, M.E. Child drawing: Hospital—An instrument designed to measure the emotional status of hospitalized school-aged children. J. Pediatr. Nurs. 1999, 14, 2–9. [Google Scholar] [CrossRef]
“How did it feel being in a place that wasn’t your home?” |
“What did you think when you saw all the tubes and machines? Did they scare you?” |
“Did you know what all those things were for?” |
“Did you ever see or hear weird things? How did that make you feel? Did you feel lonely in the hospital? Why?” |
“How did you feel when you missed them?” |
“Was it difficult to sleep in the hospital? |
“What bothered you?” |
“What things made you feel nervous?” |
“Did the tubes or machines hurt? What was the worst?” |
“Did it feel you had to stay in one position for too long? Was it difficult to tell the doctors or nurses how you felt?” |
“How did you tell them what you needed if you couldn’t talk?” |
“Did you understand what the doctors or nurses were doing?” |
“They should explain things better?” |
“Was there a nurse or doctor that made you feel better? |
Participants | Gender | Age | Social Background Lives | Illness | Days Hospital |
---|---|---|---|---|---|
1 | F | 9 | Parents and sister | Asthma | 6 |
2 | F | 9 | Mother | Abdominalpain | 7 |
3 | F | 10 | Parents and brother | Pneumonia | 10 |
4 | M | 11 | Parents/brothers | Bronchitis | 5 |
5 | M | 11 | Parents | Migraine | 6 |
6 | M | 12 | Mother and sister | Asthma | 6 |
7 | F | 12 | Parents | Peritonitis | 10 |
8 | M | 13 | Parents/2 sisters | Traumatic brain | 15 |
9 | F | 10 | Parents/sister | Pneumonia | 8 |
10 | M | 10 | Parents | Appendicitis | 7 |
Themes | Subthemes |
---|---|
3.1. Emotions and Feelings | Fear of Death and Unfamiliar Hospital Setting. Anxiety about Medical Equipment |
Loneliness and Isolation | |
Sensory Overload | |
3.2. Experiences of Pain and Discomfort | Disturbances from Hospital Environment. Medical Procedures and Improper Positioning |
3.3. Interaction and Communication with Medical Staff | Communication Inability |
Lack of Information | |
Positive Interaction with Nurses |
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Sillero Sillero, A.; Ayuso Margañon, R.; Marques-Sule, E.; Gil Poisa, M. Child-Centered Care: A Qualitative Study Exploring Pediatric Hospitalization Through Children’s Perspectives. Nurs. Rep. 2024, 14, 3138-3149. https://doi.org/10.3390/nursrep14040228
Sillero Sillero A, Ayuso Margañon R, Marques-Sule E, Gil Poisa M. Child-Centered Care: A Qualitative Study Exploring Pediatric Hospitalization Through Children’s Perspectives. Nursing Reports. 2024; 14(4):3138-3149. https://doi.org/10.3390/nursrep14040228
Chicago/Turabian StyleSillero Sillero, Amalia, Raquel Ayuso Margañon, Elena Marques-Sule, and María Gil Poisa. 2024. "Child-Centered Care: A Qualitative Study Exploring Pediatric Hospitalization Through Children’s Perspectives" Nursing Reports 14, no. 4: 3138-3149. https://doi.org/10.3390/nursrep14040228