Making decisions on health care for children / adolescents with complex chronic conditions: a review of the literature

Fernandez, Herminia Guimarães Couto; Moreira, Martha Cristina Nunes; Gomes, Romeu

doi:10.1590/1413-81232018246.19202017

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REVIEW • Ciênc. saúde colet. 24 (6) • June 2019 • https://doi.org/10.1590/1413-81232018246.19202017 copy

Making decisions on health care for children / adolescents with complex chronic conditions: a review of the literature

Authorship SCIMAGO INSTITUTIONS RANKINGS

Abstract

The profile of pediatric care has gone through changes in Brazil and in the world. This process becomes more visible in surveys that deal with hospital admission or specialized outpatient care data. This fact leads us to the idea that it is in such spaces that these children and subjects who care for them are more visible and negotiate decisions. We aim to perform a state of the art literature review on decision making discussions and definitions, analyzing the current research in light of the theoretical Mol perspectives on the actors’ logics of chronic diseases care; And the perspective of care goods exchanges in the dialogue between Martins and Moreira, triggering the Theory of Gift. The synthesis of the literature shows that decision making may be understood as a care planning process in which family, patients and health professionals are involved, and is linked to the family-centered care model. In terms of difficulties, we point out the prevalence of a dynamic that favors a criticizable choice because of the risks of inequality, such as the lack of discussion on the options and the actuation of the family mostly in times of difficult decisions.

Keywords
Decision making; Chronic disease; Child; Adolescent

Descriptors	Doença crônica (“chronic disease”)	Tomada de decisões (“decision making”)	criança, pré-escolar, adolescente, lactente, recém-nascido (child OR “preschool child” OR adolescent OR infant OR “newborn infant”
Definitions	Diseases that present one or more of the following characteristics: are permanent, leave residual disability, are caused by non-reversible pathological change, require special patient training for rehabilitation, a long period of supervision, observation or care can be expected.	The process of conducting a selective intellectual judgment when presented with several complex alternatives consisting of several variables, that generally leads to the definition of a way of acting Synonyms: Joint, shared decision-making. Indexing Annotation Portuguese: is different from "Clinical decision making", defined as the process of formulating a diagnosis based on medical-clinical history and physical or mental exams and/or the choice of an appropriate intervention. or an idea.	Considering the existence of a fragmentation by age group, the Decs delimits 5 bands: newborn, from zero to one month of life; infant, from 1 to 23 months of age; pre-school, between 2 and 5 years of age; child between 6 and 12 years; adolescent, from 13 to 18 years of age.

Research participants	Disease	Method	Year	Country	Domain	Goal
Pais e prof saúde	IBD and JIA	Quali	2015	USA	Med 26	Understanding parents' DM process for chronic disease management
	IBD and JIA	Quali	2014	USA	Med 27	Understand how decisions are made about treatment of chronic diseases
	CHISPEN	Quali	2013	USA	Med 29	Describe factors that influence parental/medical partnerships in exchange for information and SDM when CHISPEN are referred to subspecialists
Prof Saúde	IBD and JIA	Survey	2016	USA	Med 28	To examine the use of SDM by pediatricians and their perception of facilitators and barriers to SDM with parents and patients in the beginning of treatment
	CCHC	Survey	2014	USA	Med 48	Identify existing challenges and potential strategies to provide complex care training for future pediatricians
	Chronical disease	Quali	2013	Australia	Nur 50	Explore nurse's perception of parental empowerment in chronic disease
	Chronic disease	Lit rev	2009	USA	Psyc 52	Analyzing and synthesizing research on the behavior of pediatricians in the management of chronic disease and its relation with treatment adherence
	Those who brought death	Quanti	2003	Arg	Med 30	Describing the modalities of death and factors involved in procedural DM that limit the maintenance of life.
	Those who brought death	Quanti	2001	Brazil	Med 44	Determining the prevalence of different ways of dying and identifying therapeutic limits in patients of a pediatric ICU
	Diabetes, asthma, eczema, epilepsy, O2 dependence, ventilation and nutritional, cardiac and metabolic supports	Quanti	2000	UK	Nur 31	Exploring the role and use of nur competencies in relation to the physical and psycho-social needs of children and examining how these skills are used in DM in relation to the care of children and their families with chronic illness in the community
Prof saúde crianças e seus pais	ALL, asthma, DM (Diabetes Mellitus), CF, obesity	Quanti	2015	USA	Med and Nur 47	Understanding the nature of the child's participation in the management of the care of his or her illness.
	CCHC	Quali	2013	USA	Med 49	Identifying prevailing issues discussed in the pediatric palliative care consultation of patients with CCHC care by pediatric generalists
	JIA	Quali	2007	UK	Antrop 42	Exploring the experience of everyday life and dealing with the illness of children that live with JIA.
	Diabetes M1	Quali	2006	UK	Sociol 57	Investigating children's opinions about their diabetes, their participation in the management
Prof saúde, adolescentes e seus pais	Of their care, their daily likes and dislikes, achievements and problems	Quali	2009	Israel	Med, ci soc 32	Estudar formas como decisões de tratamento são alcançadas na prática, durante encontros em que gastro pediatras comunicam más notícias e seus reflexos para pacientes, familiares e relação médico paciente
Pais e Crianças	DII	Quali	2009	Israel	Med, soc, sci 32	Studying how treatment decisions are reached in practice during encounters in which gastro pediatricians communicate bad news and their reflexes to the patients, family and patient-physician relationship
Pais e Crianças	CF, Diabetes M and asthma	Quanti	2012	USA	Psyc 33	Developing an instrument to measure DM involvement in the management of health condition in children and adolescents with CF, Diabetes M and asthma.
Pais e adolescentes	Asthma, DM type 1 or CF	Quali	2009	USA	Psyc 34	Exploring collaborative DM concept from the perspective of children and their parents and generating items for new measure of SDM parent-child report
Pais e adolescentes	JIA/Crohn	Quali	2016	USA	Med 36	Comparing factors considered by the parents with those considered by the adolescents in DM regarding treatments of chronic diseases.
Crianças	CF, JIA, DII, sickle cell anemia	Survey	2008	USA	Med 35	Describing the preferences for decision-making for the treatment of adolescents with chronic diseases and their parents, and on what measures they agree.
Adolescentes	Haemorrhagic Disorder	Quali	2012	Can	Nur 51	Analyzing how children understand family-centered care and their inherent role in this approach
	Crohn and JIA	Quali	2013	USA	Med 37	Understanding the roles and preferences of adolescents in DM for chronic diseases
	Cancer	Lit rev	2011	USA	Multiprof 38	Summarizing available literature on decision-making aspects of fertility preservation among adolescent cancer patients and recommending strategies for their participation.
	Healthy and sickle cell anemia, HIV, cancer, asthma	Survey	2004	USA	Psyc 43	Exploring whether there are differences between adolescents with chronic diseases and healthy with regard to their attitudes about end-of-life issues
	Chronic disease	Lit rev	2014	Brazil	Collective health 12	Analyzing the production of knowledge about chronic diseases in children/ adolescents, aiming to contribute to the systematization of care principles for these subjects.
	Healthy and asthma, Diabetes M	Quali	2003	EUA	Enf 54	Descrever compreensão de crianças dos adolescentes sobre pesquisas e fatores socioculturais que as influenciam a envolverem-se e a continuarem a participar de pesquisas clínicas
Pais	epilepsy or eczema	Quanti	2010	UK	Nur 56	Determining whether the point of view of children with a chronic disease in relation to clinical trials was different from that of healthy children
Pais	Diabetes M and hematologic oncotic disease	Quali	2003	USA	Nur 54	Describing the understanding of children and adolescents about research and sociocultural factors that influence them to become involved and to continue to participate in clinical research
	CHISPEN	Quali	2015	Italy	Med 45	Exploring experiences and perceptions of parents in information, management and relational continuity of care for CHISPEN after discharge
	Thalassemia	Quali	2015	Tail	Nur 55	Designing, implementing and evaluating a Family Empowerment Program guided by the disease belief Model.
	CHISPEN	Survey	2015	USA	Nur, Med, Psyc 39	Analyzing whether the way parents report SDM varies with type of need (physical, mental or both) and whether home medical care attenuates these differences
	Chronic	Survey	2014	USA	Med 46	Exploring experience of parents and caregivers their knowledge and preferences regarding early directives for children with chronic diseases
	Life risk	Quali	2013	USA	Med 40	Identifying and illustrating common heuristics used by parents of children with life-threatening illnesses while confronting and making medical decisions
	Cancer	Quali	2011	USA	Nur 41	Analyzing how parents who do not live together make treatment decisions for their children with Cancer
	Diabetes M, asthma, epilepsy, CRF, Cancer and illnesses that limit life	Quanti quali	2005	USA, Ch Scot	Nur 53	Examining, culturally cross-examined, the experience of parents caring for children with chronic diseases both in terms of the impact on family life as well as the nature of the support received from the health services in Hong Kong and Scotland

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[1] Collaborations

HGC Fernandez was responsible for the review and analysis of the literature, writing, critical review and approval of the final version of the article to be published. MCN Moreira participated in the methodological design, literature analysis, writing, critical review and approval of the final version of the article to be published. R Gomes participated in the critical review and approval of the final version of the article to be published.