Ability of management of families of children with chronic conditions for care at home
Capacidad para gestionar familias de niños con enfermedades crónicas para el cuidado en el hogar
Habilidade de manejo de famílias de crianças com condições crônicas para o cuidado no domicílio
Melissa Joice de Abreu Felizardo; Juliana Barony da Silva; Eliane Tatsch Neves; Elysângela Dittz Duarte
Abstract
Objective: to analyze the relationship between families' living context and their management skills in caring for children with chronic health conditions.
Method: a mixed, convergent parallel study, with the Family Management Style as the theoretical framework. Participants were family members of children with chronic conditions egressing from a Neonatal Intensive Care Unit in Southeastern Brazil. For the collection of quantitative data, the instrument Family Management Measure and a questionnaire of socio-demographic characterization were used. Quantitative data were analyzed using the Stata 15 statistical program. Qualitative data were produced by means of semi-structured interviews and submitted to the Directed Content Analysis.
Results: the families presented a positive average score in the Management Ability scale, having greater ease to meet the care needs of the child with chronic condition at home. Favorable social and economic conditions contributed to the family's ability to care for the child with chronic health condition.
Conclusions and implications for practice: it was concluded that there is a relationship between the context of life of the families and the ability to manage the child in chronic condition. Being able to count on a partner or other family members can improve the management skills of these families.
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Resumo
Objetivo: analisar a relação entre o contexto de vida das famílias e a sua habilidade de manejo no cuidado às crianças em condições crônicas de saúde.
Método: estudo misto, do tipo paralelo convergente, tendo o Estilo de Manejo Familiar como quadro teórico. Participaram familiares de crianças com condições crônicas egressas de Unidade de Terapia Intensiva Neonatal do Sudeste do Brasil. Para a coleta de dados quantitativos, foram utilizados o instrumento Medida de Manejo Familiar e um questionário de caracterização sociodemográfica. Os dados quantitativos foram analisados por meio do programa estatístico Stata 15. Os dados qualitativos foram produzidos por meio de entrevista semiestruturada e submetidos à Análise de Conteúdo Dirigida.
Resultados: as famílias apresentaram um escore médio positivo na escala Habilidade de Manejo, possuindo maior facilidade para atender às necessidades de cuidado do filho com condição crônica no domicílio. Condições sociais e econômicas favoráveis contribuíram para a capacidade da família em cuidar da criança com condição crônica de saúde.
Conclusões e implicações para a prática: concluiu-se que há relação entre o contexto de vida das famílias e a habilidade de manejo da criança em condição crônica. Poder contar com o companheiro ou com outros membros da família pode melhorar a habilidade de manejo dessas famílias.
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Referências
1 Adib-Hajbaghery M, Ahmadi B. Caregiver burden and its associated factors in caregivers of children and adolescents with chronic conditions. Int J Community Based Nurs Midwifery. 2019;7(4):258-69.
2 Neves ET, Okido ACC, Buboltz FL, Santos RP, Lima RAG. Accessibility of children with special health needs to the health care network. Rev Bras Enferm. 2019;72(Supl. 3):65-71.
3 Tavares TS, Silva KL, Lima RG, Duarte ED. Garantia dos direitos sociais das crianças com condições crônicas: reinventando o cuidado para a cidadania. Rev Bras Enferm. 2021;74(Supl. 4):e20190136.
4 Ramos RM, Nóbrega VM, Fernandes LTB, Machado AN, Collet N. Paternal care to children and adolescent with chronic disease: maternal perception. Rev Gaúcha Enferm. 2018;38(3):e0006.
5 Caples M, Martin AM, Dalton C, Marsh L, Savage E, Knafl G et al. Adaptation and resilience in families of individuals with down syndrome living in Ireland. Br J Learn Disabil. 2018;46(3):146-54.
6 Dias BC, Marcon SS, Reis P, Lino IGT, Okido ACC, Ichisato SMT et al. Family dynamics and social network of families of children with special needs for complex/continuous cares. Rev Gaúcha Enferm. 2020;41(0):e20190178.
7 Knafl KA, Deatrick JA. Family management style: concept analysis and development. J Pediatr Nurs. 1990;5(1):4-14. PMid:2308062.
8 Bousso RS, Ichikawa CRF, Misko MD, Santos MR, Baliza MF, Mendes-Castilho AMC et al. Validação do Family Management Measure para a cultura brasileira. Rev Bras Enferm. 2017;70(6):1151-8.
9 Estrem HH, Thoyre SM, Knafl KA, Frisk Pados B, Van Riper M. “It’s a Long-Term Process”: description of daily family life when a child has a feeding disorder. J Pediatr Health Care. 2018;32(4):340-7.
10 Van Riper M, Knafl GJ, Roscigno C, Knafl KA. Family management of childhood chronic conditions: Does it make a difference if the child has an intellectual disability? Am J Med Genet A. 2018;176(1):82-91.
11 Fleming L, Knafl K, Knafl G, Van Riper M. Parental management of adrenal crisis in children with congenital adrenal hyperplasia. J Spec Pediatr Nurs. 2017;22(4):1-10.
12 Weissheimer G. Family management of children and adolescents with neurological disease and its relationship with family structure and physical dependence: a cross-sectional study [dissertação]. Curitiba: Universidade Federal do Paraná; 2017 [citado 2021 nov 1]. Disponível em:
13 Knafl KA, Deatrick JA, Gallo AM, Skelton B. Tracing the use of the Family Management Framework and measure: a scoping review. J Fam Nurs. 2021;27(2):87-106.
14 Knafl KA, Deatrick JA, Havill NL. Continued development of the Family Management Style Framework. J Fam Nurs. 2012;18(1):11-34.
15 Creswell J, Clark VLP. Designing and conducting mixed methods research. 3rd ed. Califórnia: SAGE Publications; 2017.
16 Hong QN, Fàbregues S, Bartlett G, Boardman F, Cargo M, Dagenais P et al. The Mixed Methods Appraisal Tool (MMAT) version 2018 for information professionals and researchers. Educ Inf. 2018;34(4):285-91.
17 Duarte ED, Tavares TS, Nishimoto CLJ, Azevedo VMGDO, Silva BCN, Silva JB. Questionnaire for identifying children with chronic conditions (QuICCC-R): translation and adaptation. Acta Paul Enferm. 2018;31(2):144-52.
18 Fernandes PTS, Santana TC, Nogueira AL, Santos FC, Bertoncello D. Desenvolvimento neuropsicomotor de recém-nascidos prematuros: uma revisão sistemática. Con Scientia e Saúde. 2017;16(4):463-70.
19 Knafl K, Deatrick JA, Gallo A, Dixon J, Grey M, Knafl G et al. Assessment of the psychometric properties of the family management measure. J Pediatr Psychol. 2011;36(5):494-505.
20 Knafl K, Deatrick J, Gallo A, Dixon J, Grey M, Knafl G et al. Family Management Measure. 2011 [citado 2021 mar 7]. Disponível em:
21 Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277-88.
22 Cicchetti DV. Guidelines, criteria, and rules of thumb for evaluating normed and standardized assessment instruments in psychology. Psychol Assess. 1994;6(4):284-90.
23 Greene JC, Caracelli VJ, Graham WF. Toward a conceptual framework for mixed-method evaluation designs. Educ Eval Policy Anal. 1989;11(3):255-74.
24 Resolução nº 466, de 12 de dezembro de 2012 (BR). Dispõe sobre diretrizes e normas regulamentadoras de pesquisas envolvendo seres humanos. Diário Oficial da União [periódico na internet], Brasília (DF), 13 jun 2013 [citado 2021 nov 2]. Disponível em:
25 Resolução nº 510, de 7 de abril de 2016 (BR). Dispõe sobre as normas aplicáveis à pesquisa em Ciências Humanas e Sociais. Diário Oficial da União [periódico na internet], Brasília (DF), 24 maio 2016 [citado 2021 nov 2]. Disponível em:
26 Silva BGDA, Machado AN, Bento LT, Maria E, Vaz C, Elizabete M et al. Become a mother of children with chronic disease: experiencing the care of the child. Int J Dev Res. 2019;09(12):32876-81.
27 Sheng N, Ma J, Ding W, Zhang Y. Family management affecting transition readiness and quality of life of Chinese children and young people with chronic diseases. J Child Health Care. 2018;22(3):470-85.
28 Weissheimer G, Mazza VA, Teodoro FC, Szylit R, Ichikawa CRF, Schepelski UGFA. Family Management and socioeconomic situation of children and adolescents with neurological disorders. Rev Bras Enferm. 2020;73(4):e20190042.
29 Knalf KA, Deatrick JÁ. The challenge of normalization for families of children with chronic conditions. Pediatr Nurs. 2002;28(1):49-56.
30 Rolland JS. Parental illness and disability: A family systems framework. J Fam Ther. 1999;21(3):242-66.
31 Chusri O, Deoisres W, Van Riper M. Influencing of family management in families with thalassemic children on health related quality of life and family functioning: sem approach. Walailak J Sci Technol. 2019;16(1):27-38.
32 Son HK, Kim DH, Lee H, Kim H, Chung K, Kim HS. Family management of childhood atopic dermatitis. J Adv Nurs. 2018;74(6):1371-9.
33 Im Y, Kim DH. Family Management Style and psychosocial health of children with chronic conditions. J Child Fam Stud. 2021;30(2):483-92.
34 Ichikawa CRF, Santos SSC, Bousso RS, Sampaio PSS. The family management of children with chronic conditions according to Edgar Morin’s complexity theory. Rev Enferm Cent Oeste Min. 2018;8:e1276.
35 Currie G, Szabo J. “It is like a jungle gym, and everything is under construction”: the parent’s perspective of caring for a child with a rare disease. Child Care Health Dev. 2019;45(1):96-103.
36 Silva BGA, Machado AN, Nóbrega VM, Oliveira RC, Vaz EMC, Collet N. Management of care for children/adolescents with chronic diseases: (dis)articulation of the network and fragmentation of the actions. Rev Enf UFSM. 2020;10:e76.
37 Luz RO, Pieszak GM, Arrué AM, Gomes GC, Neves ET, Rodrigues AP. Therapeutic itinerary of families of children with special health needs. Rev RENE. 2019;20:e33937.
38 Pedrosa RKB, Guedes ATA, Soares AR, Vaz EMC, Collet N, Reichert APS. Itinerary of children with microcephaly in the health care network. Esc Anna Nery Rev Enferm. 2020;24(3):1-8.
39 Machado AN, Nóbrega VM, Silva MEA, França DBL, Reichert APS, Collet N. Doença crônica infantojuvenil: vínculo profissional-família para a promoção do apoio social. Rev Gaúcha Enferm. 2018;39(0):e20170290.
Submetido em:
24/02/2022
Aceito em:
01/06/2022
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