Factors Involved in Decision-Making Dilemmas Faced by Parents of Children with Severe Asthma in PICU During the Development of Discharge Care Plans: A Phenomenological Study

References

• Licari A, Brambilla I, Marseglia A, De Filippo M, Paganelli V, Marseglia GL. Difficult vs. severe asthma: definition and limits of asthma control in the pediatric population. Front Pediatr. 2018;6:170. doi:10.3389/fped.2018.00170
   PubMed Web of Science ®Google Scholar
• Pijnenburg MW, Fleming L. Advances in understanding and reducing the burden of severe asthma in children. Lancet Respir Med. 2020;8(10):1032–1044. doi:10.1016/S2213-2600(20)30399-4
   PubMed Web of Science ®Google Scholar
• Versiani NPDQ, Goncalves AC, Cruz AA, De lima BFLL. Lung function in severe pediatric asthma: a longitudinal study in children and adolescents in Brazil. Clin Transl Allergy. 2017;7:48. doi:10.1186/s13601-017-0183-6
   PubMed Web of Science ®Google Scholar
• Ross KR, Gupta R, DeBoer MD, et al. Severe asthma during childhood and adolescence: a longitudinal study. J Allergy Clin Immunol. 2020;145(1):140–146. doi:10.1016/j.jaci.2019.09.030
   PubMed Web of Science ®Google Scholar
• Larenas-Linnemann D, Nieto A, Palomares O, Pitrez PM, Cukier G. Moving toward consensus on diagnosis and management of severe asthma in children. Curr Med Res Opin. 2018;34(3):447–458. doi:10.1080/03007995.2017.1400961
   PubMed Web of Science ®Google Scholar
• Licari A, Ciprandi R, Marseglia G, Ciprandi G. Anxiety and depression in adolescents with severe asthma and in their parents: preliminary results after 1 year of treatment. Behav Sci. 2019;9(7). doi:10.3390/bs9070078
   PubMedGoogle Scholar
• Heuckendorff S, Johansen MN, Overgaard C, Johnsen SP, Kelly Y, Fonager K. Parental mental health, socioeconomic position and the risk of asthma in children-a nationwide Danish register study. Eur J Public Health. 2022;32(1):14–20. doi:10.1093/eurpub/ckab205
   PubMed Web of Science ®Google Scholar
• Rastogi D, Gupta S, Kapoor R. Comparison of asthma knowledge, management, and psychological burden among parents of asthmatic children from rural and urban neighborhoods in India. J Asthma. 2009;46(9):911–915. doi:10.3109/02770900903191323
   PubMed Web of Science ®Google Scholar
• Levy BD, Noel PJ, Freemer MM, et al. Future research directions in asthma. An NHLBI working group report. Am J Respir Crit Care Med. 2015;192(11):1366–1372. doi:10.1164/rccm.201505-0963WS
   PubMed Web of Science ®Google Scholar
• Cazzola M, Matera MG, Rogliani P, Calzetta L, Ora J. Step-up and step-down approaches in the treatment of asthma. Expert Rev Respir Med. 2021;15(9):1159–1168. doi:10.1080/17476348.2021.1935245
   PubMed Web of Science ®Google Scholar
• Reddy AP, Gupta MR. Management of asthma: the current US and European guidelines. Adv Exp Med Biol. 2014;795:81–103.
   PubMed Web of Science ®Google Scholar
• Marangos-Frost S, Wells D. Psychiatric nurses’ thoughts and feelings about restraint use: a decision dilemma. J Adv Nurs. 2000;31(2):362–369. doi:10.1046/j.1365-2648.2000.01290.x
   PubMed Web of Science ®Google Scholar
• Klok T, Lubbers S, Kaptein AA, Brand PL. Every parent tells a story: why non-adherence may persist in children receiving guideline-based comprehensive asthma care. J Asthma. 2014;51(1):106–112. doi:10.3109/02770903.2013.841191
   PubMed Web of Science ®Google Scholar
• Srour-Alphonse P, Cvetkovski B, Azzi E, et al. Understanding the influences behind parents’ asthma decision-making: a qualitative exploration of the asthma network of parents with children with asthma. Pulm Ther. 2021;7(1):151–170. doi:10.1007/s41030-021-00145-w
   PubMedGoogle Scholar
• Miller VA. Parent-child collaborative decision making for the management of chronic illness: a qualitative analysis. Fam Syst Health. 2009;27(3):249–266. doi:10.1037/a0017308
   PubMed Web of Science ®Google Scholar
• Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–357. doi:10.1093/intqhc/mzm042
   PubMed Web of Science ®Google Scholar
• Edward KL, Welch T. The extension of Colaizzi’s method of phenomenological enquiry. Contemp Nurse. 2011;39(2):163–171. doi:10.5172/conu.2011.163
   PubMed Web of Science ®Google Scholar
• Brody JL, Annett RD, Scherer DG, Turner C, Dalen J. Enrolling adolescents in asthma research: adolescent, parent, and physician influence in the decision-making process. J Asthma. 2009;46(5):492–497. doi:10.1080/02770900902866768
   PubMed Web of Science ®Google Scholar
• Jonas D, Scanlon C, Bogetz JF. Parental decision-making for children with medical complexity: an integrated literature review. J Pain Symptom Manage. 2022;63(1):e111–e123. doi:10.1016/j.jpainsymman.2021.07.029
   PubMed Web of Science ®Google Scholar
• Becker TD, Lin HC, Miller VA. A pilot study of observed physician-parent-child communication and child satisfaction in a gastroenterology clinic. Patient Prefer Adherence. 2018;12:1327–1335. doi:10.2147/PPA.S171620
   PubMed Web of Science ®Google Scholar
• Turner EM, Koskela-Staples N, Voorhees S, McQuaid EL, Fedele DA. Health-related decision-making in early adolescents with poorly controlled asthma. Clin Pract Pediatr Psychol. 2021;9(1):24–34.
   Google Scholar
• Fiks AG, Mayne SL, Karavite DJ, et al. Parent-reported outcomes of a shared decision-making portal in asthma: a practice-based RCT. Pediatrics. 2015;135(4):e965–e973. doi:10.1542/peds.2014-3167
   PubMed Web of Science ®Google Scholar
• Kornblit A, Cain A, Bauman LJ, Brown NM, Reznik M. Parental perspectives of barriers to physical activity in urban schoolchildren with asthma. Acad Pediatr. 2018;18(3):310–316. doi:10.1016/j.acap.2017.12.011
   PubMed Web of Science ®Google Scholar
• Heyduck K, Bengel J, Farin-Glattacker E, Glattacker M. Adolescent and parental perceptions about asthma and asthma management: a dyadic qualitative analysis. Child Care Health Dev. 2015;41(6):1227–1237. doi:10.1111/cch.12277
   PubMed Web of Science ®Google Scholar
• Bokhour BG, Cohn ES, Cortes DE, et al. Patterns of concordance and non-concordance with clinician recommendations and parents’ explanatory models in children with asthma. Patient Educ Couns. 2008;70(3):376–385. doi:10.1016/j.pec.2007.11.007
   PubMed Web of Science ®Google Scholar
• Coyne I, Amory A, Kiernan G, Gibson F. Children’s participation in shared decision-making: children, adolescents, parents and healthcare professionals’ perspectives and experiences. Eur J Oncol Nurs. 2014;18(3):273–280. doi:10.1016/j.ejon.2014.01.006
   PubMed Web of Science ®Google Scholar
• Gutierrez SJ, Fagnano M, Wiesenthal E, Koehler AD, Halterman JS. Discrepancies between medical record data and parent reported use of preventive asthma medications. J Asthma. 2014;51(4):446–450. doi:10.3109/02770903.2013.878351
   PubMed Web of Science ®Google Scholar
• Harrington KF, Haven KM, Bailey WC, Gerald LB. Provider perceptions of parent health literacy and effect on asthma treatment recommendations and instructions. Pediatr Allergy Immunol Pulmonol. 2013;26(2):69–75. doi:10.1089/ped.2013.0237
   PubMed Web of Science ®Google Scholar
• Feudtner C, Schall T, Hill D. Parental personal sense of duty as a foundation of pediatric medical decision-making. Pediatrics. 2018;142(Suppl 3):S133–S141. doi:10.1542/peds.2018-0516C
   PubMedGoogle Scholar
• Yoos HL, Kitzman H, Henderson C, et al. The impact of the parental illness representation on disease management in childhood asthma. Nurs Res. 2007;56(3):167–174. doi:10.1097/01.NNR.0000270023.44618.a7
   PubMed Web of Science ®Google Scholar
• Finnvold JE. In their own words: early childhood asthma and parents’ experiences of the diagnostic process. Scand J Caring Sci. 2010;24(2):299–306. doi:10.1111/j.1471-6712.2009.00720.x
   PubMed Web of Science ®Google Scholar
• Lakhanpaul M, Culley L, Robertson N, et al. A qualitative study to identify parents’ perceptions of and barriers to asthma management in children from South Asian and White British families. BMC Pulm Med. 2017;17(1):126. doi:10.1186/s12890-017-0464-9
   PubMed Web of Science ®Google Scholar
• Goddard B, Hutton A, Guilhermino M, McDonald VM. Parents’ decision making during their child’s asthma attack: qualitative systematic review. J Asthma Allergy. 2022;15:1021–1033. doi:10.2147/JAA.S341434
   PubMed Web of Science ®Google Scholar
• Morawska A, Gregory C, Burgess S. Parental beliefs about behaviour problems of their asthmatic children and interventions to support parenting. J Child Health Care. 2012;16(1):75–90.
   PubMed Web of Science ®Google Scholar
• Law GC, Jones CJ, Bulbul A, Smith HE. ”At a loss of what to do”: a qualitative analysis of parents’ online discussion forums about their administration of asthma inhalers to their young children. J Asthma. 2020;57(8):914–923. doi:10.1080/02770903.2019.1615941
   PubMed Web of Science ®Google Scholar
• Srour-Alphonse P, Cvetkovski B, Rand CS, et al. It takes a village - asthma networks utilized by parents when managing childhood asthma medications. J Asthma. 2020;57(3):306–318. doi:10.1080/02770903.2019.1568456
   PubMed Web of Science ®Google Scholar
• Butler AM, Weller B, Titus C. Relationships of shared decision making with parental perceptions of child mental health functioning and care. Adm Policy Ment Health. 2015;42(6):767–774. doi:10.1007/s10488-014-0612-y
   PubMed Web of Science ®Google Scholar
• Yin HS, Dreyer BP, Vivar KL, MacFarland S, van Schaick L, Mendelsohn AL. Perceived barriers to care and attitudes towards shared decision-making among low socioeconomic status parents: role of health literacy. Acad Pediatr. 2012;12(2):117–124. doi:10.1016/j.acap.2012.01.001
   PubMed Web of Science ®Google Scholar
• Silva N, Crespo C, Carona C, Bullinger M, Canavarro MC. Why the (dis)agreement? Family context and child-parent perspectives on health-related quality of life and psychological problems in paediatric asthma. Child Care Health Dev. 2015;41(1):112–121. doi:10.1111/cch.12147
   PubMed Web of Science ®Google Scholar
• Gandhi PK, Kenzik KM, Thompson LA, et al. Exploring factors influencing asthma control and asthma-specific health-related quality of life among children. Respir Res. 2013;14(1):26. doi:10.1186/1465-9921-14-26
   PubMed Web of Science ®Google Scholar
• Cook J, Beresford F, Fainardi V, et al. Managing the pediatric patient with refractory asthma: a multidisciplinary approach. J Asthma Allergy. 2017;10:123–130. doi:10.2147/JAA.S129159
   PubMed Web of Science ®Google Scholar