Children with Complex Chronic Conditions: “Inside the maze”

Section: Editorial

Authors

Bibiana Pérez-Ardanaz

Position

Enfermera Especialista en Pediatría y doctora en Ciencias de la Salud por la Universidad de Málaga.

Contact email: bibiarpe@gmail.com

The challenge of chronicity still presents a deep and wide scope for Health Services. Within chronicity, those patients who experience an increasing complexity in their condition are particularly vulnerable to rigidity and lack of adaptation from the health services, which are still highly oriented towards acute care, and usually present limited ability for providing an integrated and coordinated response to their care (1). In the case of the paediatric population experiencing these situations, a series of characteristic patterns can be observed: a) The presence of one or more chronic conditions which, either diagnosed or unknown, are frequently multisystemic and severe; b) Functional limitation affecting the performance of activities, which usually requires frequent use of healthcare technology, and c) High usage of healthcare resources (2). The convergence of these factors generates a significant impact upon the paediatric population and their families (3).

These fragmentation and communication problems, worsened by complexity, will generate feelings of abandonment in parents throughout their pathway along the health system, and are perceived as a source of stress and dissatisfaction. Besides, the centralization of specialized paediatric care (a very relevant issue in areas of high geographical dispersion) causes additional drawbacks for travelling, time and expenses, adding even more complexity to the experience of the disease, with implications upon quality of life. Therefore, this population requires a reorganization of the healthcare process, as well as an integration of health and social services. The question is: Who should manage and coordinate their provision, continuity and transitions of their care?

Care models have appeared in order to meet this challenge, with different elements either present or not (paediatric palliative care, home hospitalization, telemonitoring, case management, etc.), intend to address chronicity; but the lack of consensus for the definition and stratification of this population makes difficult the design and evaluation of resources, resulting in a high variability in clinical practice. Besides, these are not equally accessible, because they are organized in an unequal manner in our setting.

Despite the availability of a public health system, services are not always accessible (in terms of availability and frequency) due to the on-going underfunding of resources sustained in Spain (more frequent in terms of infantile-juvenile mental health and physical rehabilitation); this generates a inequalities in access, particularly considering the different socioeconomic realities of the population, which could present a higher expression among this group: “they live in a more precarious situation, with a lower quality of life (4), worse healthcare results, lower preference on health services and lower involvement in decision making (5)”.

Our research group has confirmed the way in which many of these determining factors are expressed in our setting. Chronic complex conditions are associated with employment difficulties and socioeconomic disadvantages (4,7) which increase directly with the needs for care, a situation which affects mothers more severely (6), and can have an stigmatizing effect. There are different support services by the institutions in order to minimize this impact, but once again, difficulties in access lead parents to resort mainly to mutual help associations, which will usually contribute to an improvement in quality of life.

In order to ensure planning and providing individualized care, it is essential to have a good knowledge of healthcare needs, the characteristics of the family environment, and the quantification of impact on their quality of life throughout the whole process, because the disease trajectory is unpredictable.

To evaluate the quality of life of the pediatric population based only on the perspective of their parents might be insufficient. As we have identified in our study, parents might underestimate it through different reasoning processes, or because they anticipate a more negative effect than what the child is really experiencing (7).
We must take into account that quality of life can be compromised by potential determining factors, such as the severity and time with the disease, age, and other socioeconomic factors. There is a well-established association between socioeconomic factors and health, and in this sense we find an upward gradient in the perception of health-related quality of life among those parents within upper social classes. Likewise, we have identified high needs for care, up to 91 visits to specialists per year, associated to superior education levels of parents (8). It is logical to think about a higher access to information in terms of obtaining support and assistance. It could also be the case that some distortions in health perception were expressed in inferior social classes (9), with different expectations and attitudes towards care services, and even towards the activities of their children.

Our results show the interaction between social factors and the complexity of chronicity (10), with these factors acting as structural amplifiers of chronicity impact. There are currently no doubts about considering social factors for the design of health services, because the social disparities generated can have major consequences for health at medium and long term.

Summing up, our findings highlight the importance of introducing the evaluation of said dimensions in clinical practice, because this could improve the individualization of interventions, without forgetting that the specific processes of the disease, its clinical implications and needs, are heterogeneous and dynamic, and depending on multiple factors.

Advanced practice nurses can help families to identify and act proactively; taking into account their priorities, these could include: sustaining a sense of normality (healthcare-social-school); boosting self-management and self-efficacy; extending the approach to the family (wellbeing of siblings, financial difficulties, relief for caregiver burden), and improving the quality and scope of social care and health.

In this sense, integrated care will be strategical, revolving around a strong coordination of specific units in the hospital setting, and the provision of home care, ensuring safe and continuous transitions. Besides, further research is necessary regarding identification and stratification methods, as well as incorporating the perspective of children and their parents. If we want our healthcare system to offer an adequate response to this reality, there is no other choice.

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