Editorial
Caring for the family of the child or young person with chronic illness: An imperative for nurses
El cuidado de la familia del niño o joven con enfermedad crónica: un imperativo para las enfermeras
Maria do Céu Barbieri-Figueiredo
Investigadora Distinguida Senior, Universidad de Huelva, Departamento de Enfermería, Presidente do Comité da Prática da Asociación Internacional de Enfermería de la Familia (IFNA)
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The possibility of family planning, the role of women in society and in the labour market, and the age of a woman when her first child is born contribute, among other factors, to reducing childbearing and to evaluating infancy and adolescence.<a class="elsevierStyleCrossRef" href="#bib0005"><span class="elsevierStyleSup">1</span></a></p><p id="par0010" class="elsevierStylePara elsevierViewall">Although the number of births is low, the evolution of science, technology and healthcare services has fortunately permitted the rates of infant mortality to be the lowest in history: 2.7 per 1000 live births in 2018, in España.<a class="elsevierStyleCrossRef" href="#bib0010"><span class="elsevierStyleSup">2</span></a> The survival of children with serious illnesses, who previously died in the first months or years of life, now extends to the adult stage; this makes it possible for these children to have a long, productive life of quality with the chronic illness.</p><p id="par0015" class="elsevierStylePara elsevierViewall">There are no exact data on the number of children and young people with chronic diseases. It is estimated that chronic health conditions affect from 10% to 30% of the children in the entire world, depending on the criteria of definition used. Chronic diseases are those that last at least 12 months, or that require monitoring during 12 months, and are serious enough to create some limitations in daily life.<a class="elsevierStyleCrossRef" href="#bib0015"><span class="elsevierStyleSup">3</span></a> Examples of chronic diseases include asthma, congenital heart diseases, diabetes mellitus, obesity and epilepsy.</p><p id="par0020" class="elsevierStylePara elsevierViewall">The seriousness of chronic childhood diseases varies. However, the increase in survival represents a great demand for healthcare services and requires the parents to enlarge their parental role to become caregivers for their children. It is especially important for health services, whether in community or hospital settings, to accompany these children and young people as long as possible, up to the transition to services for adults, which should not occur before the age of 18/21 years.<a class="elsevierStyleCrossRef" href="#bib0005"><span class="elsevierStyleSup">1</span></a></p><p id="par0025" class="elsevierStylePara elsevierViewall">In a 2016 study<a class="elsevierStyleCrossRef" href="#bib0020"><span class="elsevierStyleSup">4</span></a> carried out in Granada (Spain), to ascertain the healthcare resources needed for children with complex chronic diseases, the authors found that a significant proportion of children used multiple health services, producing up to 139 annual contacts with the health system. In another investigation,<a class="elsevierStyleCrossRef" href="#bib0025"><span class="elsevierStyleSup">5</span></a> a retrospective longitudinal epidemiological study in Portugal for the period from 2011 through 2015, the results showed that, of the total hospitalisations of paediatric patients, 15.5% had at least 1 complex chronic disease; this represented 29.8% of days of hospitalisation, 39.4% of expense and 87.2% of deaths.</p><p id="par0030" class="elsevierStylePara elsevierViewall">Conceptualising nursing care for children/young people with chronic illnesses is inseparable from conceptualising family care, with the daily management of the chronic disease falling to the family. For that reason, chronic illness impacts the family at all levels: in the need to implement changes in life style, in the interaction among its members, in the distribution of roles, in economic resources, and in the quality of life of the family as a whole and of its individual members.<a class="elsevierStyleCrossRefs" href="#bib0030"><span class="elsevierStyleSup">6,7</span></a></p><p id="par0035" class="elsevierStylePara elsevierViewall">Having a child diagnosed with a chronic disease is recognised as one of the most difficult experiences in life.<a class="elsevierStyleCrossRef" href="#bib0040"><span class="elsevierStyleSup">8</span></a> The parents of children with chronic diseases are young adults, with an active personal and professional life, and raising their quality of life and their skills for taking care of the children will improve their physical, emotional and social wellbeing. In addition, each family is different, and the chronic illness of the child/young person does not affect all families in the same way, but all the families need support adapted to the child/young person and the situation and the stage of the process of the disease with which the family is living. If it is in the first stage, when the diagnosis is made, the family is in a state of shock and, many times, of denial; in the following stage, that of adjustment, the ill child is often overprotected. Adaptation to and acceptance of the health condition is the stage that will make social reinsertion possible, for both the child/young person and the family. The way in which each family lives each of these stages is the result of a series of factors such as the family structure, its history and culture, and the nature of the child/young person’s disease, along with the help received from health professionals.<a class="elsevierStyleCrossRef" href="#bib0045"><span class="elsevierStyleSup">9</span></a></p><p id="par0040" class="elsevierStylePara elsevierViewall">It is hoped that nurses will abandon the biomedical model, centred on dysfunction and organic pathology, and will turn to a holistic, global focus on the child/young person and their family, evaluating their uniqueness and their resources, and empowering them. From this focus, the work should be shared with the child/young person’s family, and decision-making on all procedures should be carried out with them, having the information flow among all the actors that intervene in the care process (the individual, family and health professionals), regardless of the context in which services are offered.</p><p id="par0045" class="elsevierStylePara elsevierViewall">For all these reasons, the International Family Nursing Association (IFNA) advocates that all nurses should develop competencies for taking care of families, as follows<a class="elsevierStyleCrossRef" href="#bib0050"><span class="elsevierStyleSup">10</span></a>:<ul class="elsevierStyleList" id="lis0005"><li class="elsevierStyleListItem" id="lsti0005"><span class="elsevierStyleLabel">1</span><p id="par0050" class="elsevierStylePara elsevierViewall">Improve and promote family health.</p></li><li class="elsevierStyleListItem" id="lsti0010"><span class="elsevierStyleLabel">2</span><p id="par0055" class="elsevierStylePara elsevierViewall">Focus nursing practice on families’ strengths; the support of family and individual growth; the improvement of the families’ self-management capabilities; the facilitation of successful life transitions; the improvement and management of health; and the mobilisation of family resources.</p></li><li class="elsevierStyleListItem" id="lsti0015"><span class="elsevierStyleLabel">3</span><p id="par0060" class="elsevierStylePara elsevierViewall">Demonstrate leadership and system thinking skills to ensure the quality of nursing care with families in daily practice and in all contexts.</p></li><li class="elsevierStyleListItem" id="lsti0020"><span class="elsevierStyleLabel">4</span><p id="par0065" class="elsevierStylePara elsevierViewall">Commit to self-reflective practice based on examination of nursing actions with families and family responses.</p></li><li class="elsevierStyleListItem" id="lsti0025"><span class="elsevierStyleLabel">5</span><p id="par0070" class="elsevierStylePara elsevierViewall">Practice nursing with an evidence-based approach.<a class="elsevierStyleCrossRef" href="#bib0045"><span class="elsevierStyleSup">9</span></a></p></li></ul></p><p id="par0075" class="elsevierStylePara elsevierViewall">In short, bearing in mind the increase in children/young people with chronic illnesses and the needs that fall to the families taking care of them, it is essential to train nurses in these skills.</p></span>" "pdfFichero" => "main.pdf" "tienePdf" => true "fechaRecibido" => "2021-04-01" "fechaAceptado" => "2021-04-07" "NotaPie" => array:1 [ 0 => array:2 [ "etiqueta" => "☆" "nota" => "<p class="elsevierStyleNotepara" id="npar0005">Please cite this article as: Barbieri-Figueiredo MC. El cuidado de la familia del niño o joven con enfermedad crónica: un imperativo para las enfermeras. Enferm Clin. 2021;31:133–134.</p>" ] ] "bibliografia" => array:2 [ "titulo" => "References" "seccion" => array:1 [ 0 => array:2 [ "identificador" => "bibs0005" "bibliografiaReferencia" => array:10 [ 0 => array:3 [ "identificador" => "bib0005" "etiqueta" => "1" "referencia" => array:1 [ 0 => array:2 [ "contribucion" => array:1 [ 0 => array:2 [ "titulo" => "Enfermagem em Saúde da Criança e do Jovem numa Sociedade em Mudança" "autores" => array:1 [ 0 => array:2 [ "etal" => false "autores" => array:2 [ 0 => "A.L. Ramos" 1 => "M.C. 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