New perspectives in integral care for children with complex chronic conditions and their families

Section: Editorial

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Sánchez Muñoz E. Nuevas perspectivas en el cuidado integral del menor con patología crónica compleja y su familia. Metas Enferm may 2023; 26(4):3-6. Doi:


Ester Sánchez Muñoz


Máster en Salud Pública Universidad Rey Juan Carlos de Madrid. Enfermera especialista en Pediatría Unidad de Patología Crónica Compleja Infantil y Rehabilitación Intestinal, Hospital La Paz de Madrid. Universidad Alfonso X El Sabio. Madrid (España).

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In recent years, there has been a development of integrated processes of care in order to address chronicity, which intend to prevent fragmentation of care, by including patient-family as main characters, and where different disciplines conduct their interventions in a coordinated way and based on the best scientific evidence available.

Even if addressing chronicity has been historically circumscribed to the life stages of adulthood and old age, and associated also with dependence and disability, the scientific-technical advances of the past decades have allowed an increase in the survival of pre-term newborns and those born with congenital problems. Moreover, the life prognosis for the child population with congenital and chronic diseases and cancer (1,2) has had a positive evolution. Therefore, there is an increasing number of children with complex needs of care and treatment (3).

Children with Special Health Care Needs (SHCN) (4) are those who, in comparison with the overall child population, suffer or are at higher risk of suffering a chronic condition, either physical, of development, of behaviour or emotional; and who, therefore, are users of health and related services. There is a smaller group within this: those medically complex or with a complex chronic condition (CCC), which includes patients with multisystemic conditions and/or dependence of technology, and/or more complex treatment regimens.

A high number of these patients depend on technology to survive, requiring very specific care both at hospital and at home (5). On most occasions, the primary caregivers of children are their parents (6). These caregivers perform very specific procedures and techniques at home, with high complexity (5-7). The intersection of care in daily routine causes a major impact and generates restrictions in the everyday life of the family. The life of parents is conditioned by the needs of the minor, and they will spend less time for themselves and their other children (6). It is important to highlight the emotional, social and economic cost of looking after paediatric patients with disabilities, chronic diseases, or who are technology-dependent (7).

Although in Spain there are no published data of the prevalence of minors with SHCN, or of those with CCC, it is clearly a growing population, particularly in third-level hospitals. Different studies have stated the essential role of the Nursing team for training caregivers for this population by following up these families and monitoring their training; these studies have also shown the satisfaction of caregivers as well as the reduction in emotional stress, and the help for families regarding the normalization of the disease process (8). Research has also revealed that parents need information, emotional support, assistance in care, and also economic aids (8-10).

The first hospital in Spain that started addressing and caring for minors with SCHN was the Hospital Universitario La Paz in Madrid (HLPAZ), and its Unit for Paediatric Unit for Complex Chronic Conditions (UCCP) has been operational since 2008 (11). This unit has managed patients from within and outside its assigned geographical area; its activity has been gradually increased during these years, and currently its occupancy rate is over 100% (11). The HLPAZ has been persistent in its development of new strategies of care for paediatric patients with chronic conditions. The objective of the UCCP is to offer comprehensive and integrated care to patients and their families, enabling continuity of care, coordination with outpatient care (outpatient units), care in the Paediatric Emergencies Unit, and its interaction with the community setting (Primary Care) and the Paediatric Palliative Care team, as well as their subsequent transition to adulthood (12).

In order to effectively answer these needs, the Nursing Unit within the UCCP of the HLPAZ was established in 2019. From this Unit, nurses offer integrated and continuous care to patients and their relatives; and based on teamwork, they contribute to minimizing exacerbations and hospital readmissions, as well as to facilitating better health conditions in minors, at their home if possible. Some other essential objectives are also to reduce the stress of the main caregivers and increase their satisfaction, highlighting their training and the support for the family environment.

Likewise, there has been participation in other projects, by the UCCP of the HLPAZ and the aforementioned Nursing Unit, within the chronicity strategy of the Community of Madrid, with the objective of coordination with other profiles within the hospital and different agents involved in management and care for chronic patients from the different levels of care. In this context, the “Integrated Process of Care for Children with Chronic Conditions and Complexity in the Community of Madrid” was presented on May 25th, 2022. A multidisciplinary group of experts which includes me have been working in this for the past four years. The objective of this process is to define the model of care for this paediatric population, determining the level of intervention they need, and specifying the activities to be conducted, and where, when and how these will be conducted, the professional responsible for this, and which quality criteria must be met. Continuity of care will also be ensured throughout the process, guaranteeing healthcare in the most adequate level, as well as an adequate, efficient and accessible transition of care.

I cannot end up this editorial without emphasizing the importance of the road already travelled, but without forgetting that the goal is still far. Of course, this road must be travelled as a team, involving all sociosanitary and educational stakeholders in the management and care settings, and always placing the minor and their family in the centre. It is a privilege for me to form part of a multidisciplinary team that walks hand in hand with children and their families.


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