In recent years, child poverty has increased in Catalonia as a result of the economic crisis. According to the 2016 figures from the Idescat, the latest figures available, and from 2009, children are the group most at risk of poverty, more than the adult population and also more than the 65-year-old or older population group.
“Child health and poverty. What can we learn from the data?” was the title of the conference held within the framework of the Celebration of the 2018 World Health Day.
Data from the latest report related to children and the effects of the crisis on the health of the population were highlighted at the conference, published by the Observatory of the Health System of Catalonia: children with a lower socio-economic level present up to 5 times more morbidity, consume more pharmaceutical drugs (three times more psychotropic drugs) than the remainder of the child population, visit mental health centres more frequently (5.9% of girls and 11.4% of boys as opposed to 1.3% and 2.2% in girls and boys with a higher socio-economic level) and are admitted more to hospitals (45 girls and 58 boys for every 1000 as opposed to 13 and 26, respectively) especially for psychiatric reasons.
A child’s health largely depends on the economy of their parents and those that belong to families with a lower socio-economic level have more health problems, a fact that can have disastrous consequences in other areas such as education and social life and which condition their future. This fact is exacerbated in the case of children with special needs or chronic diseases where their health suffers even more from the effects of poverty because in some cases their care requires specific products which families cannot afford.
This is one of the problems that we are facing right now. There is growing scientific evidence, both in biology and in social sciences, of the importance of the early years in life (including exposure in the womb) in the development of the capacities that stimulate personal well-being throughout the life cycle. Childhood is also a structural transmitter of inequalities, both from a health and socio-economic point of view. If nothing is done, boys and girls who belong to families with few resources run the risk of growing up into adults with worse health and a lower educational and socio-economic level than others.
What can we do? We can of course strengthen the social welfare state, with structural and institutional reforms which are more than ever necessary. Educational policy is fundamental, especially by reinforcing primary education, guaranteeing equal opportunities and putting the spotlight on those children in a disadvantaged situation. Once they are adult, active labour policies are also needed. And from health policies, despite their eminently palliative nature, primary and community care is particularly important as is guaranteeing care to all children.
Assumpció González Mestre, Head of Programa Pacient Expert Catalunya® (Expert Patient Programme Catalonia®) and Cuidador Expert Catalunya® (Expert Caregiver Catalonia®) answers questions in an interview with Cari Almazán related to the figure of “expert caregiver”.
The programmes of Pacient Expert Catalunya® and Cuidador Expert Catalunya®, respectively, have the same aim of equipping people with the tools and resources to help them in their daily lives.
This type of learning programme among equals manages to improve the quality of life of people which find themselves in the environment of a disease in the context of chronicity in Catalonia, be it as patients, as caregivers or both things together.
Cari: Who is the Programa Cuidador Expert Catalunya® aimed at?
Assumpció: Our field of action is clearly orientated at the caregivers of people having chronic diseases. By “expert caregiver” we understand them to be a person who takes care of another person with a chronic disease having complex attention needs and who is able to take on that responsibility, give care and acquire the skills that help them manage the physical, emotional and social impact of giving care thereby improving their life quality and that of the person they are taking care of.
Cari: What does turning a caregiver into an expert caregiver involve?
Assumpció: When a person finds themselves in the situation of having to take on the task of taking care of another person with a disease, the life of that person is totally conditioned by the situations, planned or not, foreseen or unforeseen, which the disease might involve. Helping a person in that critical moment often generates a change in the life of the person giving care and it becomes an emotional overload in their daily lives as a result of having to address the needs of the person they are taking care of. In this sense, having more capacity to take on responsibility and being able to take care of themselves and of the other person, on the one hand, and of acquiring skills that help them manage the physical, emotional and social impact which we know this situation involves, on the other, are some of the key aspects that we would consider as essential when identifying a possible expert caregiver.
Cari: Is being able to improve the quality of life of caregivers the aim of the programme?
Assumpció: It is one of the main aims although there are others. Giving support to caregivers in the management and care of the person they are taking care of; improving the life of caregivers; being able to involve and satisfy patients and caregivers; improving the efficacy of caregivers in their own care and in the care of the person they are taking care of; learning to identify the degree of overload on caregivers; and having an influence on aspects of the health of a caregiver related to giving care, are the six specific aims of the Programa Cuidador Expert Catalunya®.
Cari: Should all caregivers become expert caregivers?
Assumpció: The end goal is not that everyone becomes an expert but rather that they become aware of what it means to be a caregiver and to learn to identify when they find themselves overloaded and that, therefore, they need to ask for help from another person of the family or from a professional to be able to deal with the situation which they find themselves in. If caregivers become aware of this situation and ask for support at the appropriate time, they will be able to give care and take care of themselves better. Therefore, the expert caregiver is a volunteer with the capacity to take care of themselves without psychophysical disabilities and who can empathise, be interested in helping, be highly motivated and have strong communicative skills. These elements are assessed in an individual interview and after completing specific questionnaires.
Cari: Perhaps it is not always easy to put oneself in someone else’s shoes…
Assumpció: One of the fundamental aspects of this initiative and one which makes it different is that the expert caregiver experiences caregiving first hand which places them in a privileged position when talking to other people who are going through similar experiences.
Cari: What role does the health professional play in relation to the expert caregiver?
Assumpció: The health professional (doctor, nurse or social worker) takes on the role of observer, who can step in to redirect the session, but only when necessary. The Cuidador Expert Catalunya® programme helps both people to closely collaborate with each other having the same aim: to improve the quality of life of the patient, the caregiver and their environment.
Cari: What are the basics of the programme in terms of content and who developed them?
Assumpció: The specific educational materials and methodological guide are the result of the participation of a lot of expert health professionals from different disciplines. These contents have later been validated with the participation of caregivers. The idea is to get to people and so an appropriate language for everyone is needed.
Cari: How has theCuidador Expert Catalunya® programme been implemented?
Assumpció: The process of implementation in a care team involves different stages which include the presentation of the programme to professionals, the selection of caregivers, the training of professionals and caregivers, the setting up of the group of caregivers and the start of sessions.
Cari: In summary therefore… what it is about, in the end, is to organise sessions?
Assumpció: Not exactly. It is about sharing knowledge and experiences among caregivers through 9 structured sessions where they approach and deal with a different subject each day looking for the tools that aid them to take care of themselves.
Cari: How is theCuidador Expert Catalunya® programme assessed?
Assumpció: It is assessed quantitatively and qualitatively by measuring the knowledge gained, the degree of self-care, quality of life, self-reported problems, the degree of overload, the degree of satisfaction and the use of services. The results between the start and end of the intervention are compared and then again 6 and 12 months after it has ended.
Cari: What is the key element of the project?
Assumpció: Without a shadow of a doubt, learning among equals and the relational network. Throughout the experience acquired during the implementation of the programme, we have had the opportunity to confirm that the fact that the programme takes place in one neighbourhood or community is very positive. The relational network between the people that participate in the different groups makes it possible for the expert caregiver to become an agent in the community. The programme becomes a community activity of learning among equals.
Unfortunately, inequalities in health are still an issue today including in our country. The crisis of recent years has once again put the spotlight on this subject.
This is why we propose an itinerary taking us through the different texts which we have published on the subject in this blog and, in particular, we invite you to read the original texts which are mentioned here in more depth, a large proportion of which have been elaborated at the AQuAS.
In September of last year, Luis Rajmil reflected on social inequalities in child health and the economic crisis in this post placing the concepts of equality, equity and reality on the agenda for discussion.
“At present, there is enough accumulated information that shows that life’s course and the conditions of prenatal life as well as life during the first few years are very influential factors in the health and social participation of an adult to come.”
At a later date, the Observatory of the effects of the crisis on the health of the population published its third report but prior to that, a post was published with a collection of individual thoughts and reflections on this subject by Xavier Trabado, Angelina González and Andreu Segura focussing on, respectively, the effects of the crisis on the mental health of people, the coordination of different mechanisms in primary and specialised care, the urgency for community health actions and the need to engage in intersectoral actions.
“It is urgent to put community health processes into action; processes in which the community is the protagonist, which constitute the shift from treating an illness to a bio-psycho-social approach which gives an impulse to intersectoral work in a network with local agents, with who there is the shared aim of improving the community’s well-being. Based on the needs detected and prioritised in a participatory way and with the local assets identified, these processes activate interventions based on evidence which are assessed”
In this other post, Cristina Colls presented an interesting case of the application of scientific evidence to political action which occurred with the revision of the socio-economic dimension of the formula for allocating resources to primary care.
“Social inequality leads to an unbalanced distribution of the population in a territory, concentrating the most serious social problems in certain municipalities or neighbourhoods having higher needs for social and health services than other territories. In this context, more needs to be done where needs are greater if the aim is to guarantee equality in the allocation of resources”
Finally, the most recent post was written by Anna García-Altés and Guillem López-Casanovas. It is a text that provides food for thought based on the latest report published from the Observatory of the Health System of Catalonia on the effects of the crisis on the health of the population.
“Understanding the mechanisms by which social inequalities have an impact on the health of the population, so as to know how best to counter or neutralise them, in any place and at any time, is an issue that must still be addressed by our social policies”
We hope that you this very short itinerary through these texts, initiatives and analyses that aim to be useful in tackling inequalities has been of interest.
This fact invites us to ask ourselves a question: why is it important to bear in mind the economic inequality in the funding of primary care teams?
The influence of socio-economic inequalities on the health of the population is a fact that has been widely studied since the 60s of last century and of which there is evidence both in the international and national context.
We know that people with a lower socio-economic status have more probability of dying before the age of 65 and that they show more physical and mental health problems during their lives. It is logical, therefore, to conclude that they need to make a more intensive use of health resources.
We also know that social inequality is a recipe for an unbalanced distribution of the population in a territory leading to an accumulation of the most serious social problems in specific municipalities or neighbourhoods that have a greater need for social and healthcare than other regions.
It is in this context that more needs to be done where there is greater necessity if equity in the allocation of resources is to be guaranteed. But where should more resources be provided?
The professionals of primary care teams are those closest to the citizen and therefore, have a comprehensive view of the health needs of the population in their territory.
In addition, the primary environment is the reference in prevention activities, in controlling chronic diseases and from which a large part of community activity is coordinated. For all these reasons, the provision for primary care teams must bear in mind the socio-economic conditions of the population they serve.
How can we find out what the socio-economic situation is of territories in which a primary care primary care team works? Many variables exist which give us indirect information (income, occupation, education, housing conditions, among others) but if we are looking for only one classification we need a unique index that synthesises all these aspects; it is what we call a deprivation index.
Deprivation indexes have been widely used as a tool in social policies because they allow an objective prioritisation to be established in small regions, ranging from a low to high socio-economic status. The concept of “deprivation” refers to unmet needs as a result of a lack of resources, not exclusively economic.
All indexes of deprivation are built by adding up the results of different socio-economic status indicators. The weight given to each indicator could be theoretical, that is, based on what a particular indicator is thought to contribute to the phenomenon of deprivation; or otherwise, the result of a multivariate statistical model.
To be able to classify the basic areas of health (reference territories of a primary care team) according to their socio-economic level, AQuAS has built an index called a composite socio-economic status indicator which synthesises seven indicators: population exempt from drug co-payment, population with incomes lower than 18,000€, population with incomes higher than 100,000€, population with manual jobs, population with insufficient educational attainment, premature deaths or potentially avoidable hospitalisations.
The statistical methodology used for calculating this indicator has been that of principal component analysis. The application of this methodology has allowed us to obtain a socio-economic status map of Catalonia.
The application of the composite socio-economic status indicator has been done within the framework of the redefinition of the model of allocation of resources for primary care and has enabled the identification of those primary care teams which will increase their budgets in coming years.
This new model of allocating resources for primary care is an experience in applying scientific evidence to political action.
Mireia Espallargues. Head of Healthcare Quality AQuAS
Identifying patients with good results in communities with unsatisfactory care can be the key to finding success factors.
There are several initiatives that advocate a high value care in order to contribute to greater efficiency and sustainability of health systems. This value is interpreted as obtaining better health gains relative to the costs, which translates into better use of available resources (1). The more traditional approach to detect this potential value was based on the identification of patients with poor health in order to establish subsequent remedial measures that lead to a good result.
In an article published in The New England Journal of Medicine, Sequist and Taveras (2) propose to analyze the problem from a different perspective:
Identify patients who are doing good (“positive outliers“)
Analyze what factors may influence their good health
Disseminate the identified success factors and expand them to the rest of the system
To accomplish this, the authors propose a new approach to measure and analyze information. It’s about relating the supply system, the community and the patient in an effort integrated as a strategy with the aim of improving population health. This type of approach strengthens assessment models that AQuAS is applying in areas such as attention to chronicity and integrated health and social care in our country (3-5).
Health determinants and social determinants
According to the authors, the population’s health status is the result of a complex web of interactions between individual patient characteristics and other determinants of health dependent of the area of residence (community). The more evident is that most determinants that affect the health of people would be generated outside the health service delivery system. These factors, that some studies estimated constitute about 80%, have a profound effect on how the patients interact with the system and consequently, the quality of care they receive and their health outcomes.
Thus, the policies and the actions in areas such as housing, employment or social welfare can not be decoupled from assessments on health and from the health system. We must emphasize the need of introducing in the context of public and social policies, the concept of health as an item to be referred to in all its dimensions and evaluated in an integrated manner, together with other social determinants besides the health system (6).
The challenge of evaluating integrated care
Given this new approach it’s necessary to analyze the performance at the community level, usually focused on the area of residence. This analysis will allow provision system to obtain a better understanding of its population and identify where patients are grouped within communities, as well as what are the environmental factors that can affect health outcomes. This represents a quality leap beyond traditional analysis of each service providing system units (hospitals, primary care, care teams, etc.). Among the advantages of this new strategy we must specify the identification of patients who reside in communities where the quality of care and the results are not satisfactory, the detection of promising approaches for patients in these communities and integrating these successful strategies into care plans for the patients.
The definition of the community and the analysis of data for evaluation
To perform this type of assessment it’s necessary to first have a good working definition of “community” as well as a robust infrastructure for data analysis. The second step consists in identifying positive outliers – extreme values with good results- in communities with poor performance or with a high burden of disease – hotspot communities– more specifically, the identification of treated patients with good health outcome in an environment of unsatisfactory service provision and, in particular, those who historically had poor results and who recently improved. Once the success factors are identified, we would move on to the phase of climbing or extending the strategies in the rest of the territory.
In the precise case of the project assessment of the care for chronic diseases, the territories with programs or models of care to chronic diseases seeking greater care integration have been identified, given the large impact on morbidity and mortality and the use of resources caused by a complex chronic population. Consequently, the analysis from this territorial or community vision -taking into account the various healthcare resources and interventions in the territory- has allowed us to identify programs or models that perform better in relation to a number of health result indicators of various quality of care dimensions. This way we can select those that are “outstanding” (good outcomes for patients) and then identify good practices and success factors.
The last step is the integration of these strategies or models with the plans of patient care. Sequist and Taveras cite some other examples of community initiatives that relate to clinical practice (care or welfare services provision) as communicating vessels between the data analysis and the interventions that can be made in various areas.
This analytical approach can have several potential uses and can also be a powerful tool for addressing socioeconomic inequalities in health outcomes; as long as they focus on the differences at the context level, on patients’ membership to a community, on differences in gender, income, or education. Finally the authors mention that, as a prerequisite for a successful implementation, it’s necessary to have a well-defined operational infrastructure in which funding is aligned with the approach of linking the community and the health care.
Similarly, sustainability challenges also occur, as it may be that the service providing system “buys” this concept of factors that historically have been considered outside the area of influence or responsibility of health care. We must also ensure that resources and community interventions are safe and reliable if we want to have the support of professionals to refer patients to these resources as well as determining the most appropriate information updating intervals.
To conclude, we’re looking at an approach that instead of focusing on the “non-compliant” patients, it’s based on the observance and analysis of the best, especially in disadvantaged areas, with the purpose of applying the same keys to success to other territories.
Bibliography
(1) Porter ME. What is value in healthcare?. N Engl J Med. 2010;26:2477-81.
(2) Sequist TD, Taveras EM. Clinic-community linkages for high-value care. N Engl J Med. 2014;371(23):2148-50.
(5) Serra-Sutton V, Montané C, Pons JMV, Espallargues M. Avaluació externa de 9 models col•laboratius d’atenció social i sanitària a Catalunya. Barcelona: AQuAS; 2014 (en premsa).
