Quality of life in heart disease
Quality of life in heart disease
06/29/2022
Cardiac malformations are considered one of the most common forms of congenital anomaly at birth. The incidence is about 1 in every 100 live newborns. Clinical manifestations vary according to the pathology and its severity.
The detection of cardiac malformations in the prenatal period has contributed to the increase in incidence, both in national and international studies. In Brazil, studies show the number of 25.7 thousand new cases per year.
Advances in surgical techniques and early diagnosis have enabled greater survival and improved quality of life for these patients.
Assessment of the quality of life of children and adolescents with congenital heart disease and the impact of the disease on society provides complementary information that can assist in clinical management by health professionals.
Although we have already found studies on the impact of congenital heart disease, we still need to learn a lot. There are many variables that involve this population and it is important to systematize knowledge on this topic.
In childhood, there is evidence that the presence of congenital heart diseases can affect height, motor, cognitive and neurological development, which can be even more pronounced in complex heart diseases. Changes in behavior, attention deficit and hyperactivity may be observed. Furthermore, the use of regular medication and recurrent hospitalizations can affect self-esteem, impacting the psychology of these children and adolescents. Maintaining health requires care from a multidisciplinary team.
Adolescents with heart disease must receive special attention, as at this stage they begin to have autonomy and need to understand the importance of cardiological monitoring and the use of medications, in addition to the need to maintain healthy habits. They must also be guided in relation to physical exercise, entry into the job market, and pregnancy and contraception.
Therefore, health care for patients with congenital heart disease must include care for their social and psychological needs as well as physiological ones, as a means of improving well-being and satisfaction with life.
Another fact is that the vast majority of publications take into account the perception of parents and/or caregivers, including the multidisciplinary team, and not the child. However, we have already seen that listening to and understanding the manifestations and valuing their experiences is essential. The report from the entire family, including siblings, also helps us to better understand what the pathology represents for everyone involved. Frequent and/or prolonged hospitalizations and travel to large centers where specialized care takes place can cause family breakdown. We also cannot forget the impact on the professional lives of mothers, who in some situations are forced to leave their jobs.
The family’s socioeconomic situation is another factor that must be observed, as not all families have the necessary resources for monitoring and treatment.
Pro Criança Cardiac focuses on caring for underprivileged children and adolescents with heart disease. With a multidisciplinary team of pediatric cardiologists, dentists, nutritionists, social workers, educators and psychologists, it ensures the appropriate management and treatment of patients. It offers medicines, basic food baskets, diapers and milk. Invasive procedures, laboratory and imaging tests are carried out at partner institutions, at no cost to families.
As a health institution, we have the role of contributing more and more to improving the quality of life of our patients and their families, through assistance actions.
by Dr. Isabela Rangel, Medical Director of Pro Criança
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Pro Criança Cardiac launches its Code of Ethics and Conduct
30/04/2024
Standard in the corporate world and increasingly necessary in the third sector, guidelines that govern internal and external relations with Pro Criança were developed in partnership with the renowned Ulhôa Canto Advogados Office.
Ethics, honesty, integrity, reliability, respect, transparency and coherence have always been very dear values for society as a whole, essential for the unblemished reputation of companies and, in recent decades, also for the Third Sector in the country, which is growing in leaps and bounds. wide. According to the Institute of Applied Economic Research (Ipea), there are more than 820,000 Civil Society Organizations active in Brazil.
One of them is Pro Criança Cardiac, which launches its Code of Ethics and Conduct on February 19th, next Wednesday, at a closed event. After the launch, there will be training aimed at the institution’s employees, suppliers and service providers in the auditorium of the Botafogo Medical Center (Rua Dona Mariana, 143). The opening will be given by Mitzy Cremona Conde, lawyer and Executive Director of Pro Criança Cardiac, and the training will be conducted by the Institution’s volunteer lawyer, Fernanda Freitas, partner at the Ulhôa Canto Advogados Office, a partner of Pro Criança for 11 years.
“Pro Criança Cardiac’s mission is to offer the best in medicine for children, with care guided by rigorous standards of quality and professional ethics. We also want to be pioneers in excellence in the implementation, training and compliance with compliance standards and guidelines, thus becoming a reference in the Third Sector”, highlights Dr. Rosa Celia Pimentel Barbosa, founder and president of the institution.
Pro Criança Cardiac’s Code of Ethics and Conduct was prepared by lawyers Mitzy Cremona Conde and Fernanda Freitas and is governed by the following fundamental principles: Strict compliance with the law, Respect for work and workers, Environmental responsibility and Rejection of corruption.
The guidelines contained therein must be observed by the institution and all its collaborators – employees and third parties acting on behalf of Pro Criança. The Code will be widely disseminated among associates, directors, advisors, administrators, doctors, partners, donors, employees, volunteers, service providers, suppliers, representatives, contractors, donors, sponsors and third parties in general who, in some way, collaborate to the development of the organization.
“It is an important step to enable and preserve our mission, vision and values, guiding and serving as a reference to all employees for professional and personal performance that encompasses the highest ethical standards, honesty and integrity”, adds Dr. Rosa Celia.
Pro Criança Cardiac launches its Code of Ethics and Conduct
Founder and president of Pro Criança is among the 50 authors of “The post-pandemic world”
30/04/2024
The founder of Pro Criança Cardiac, Dr. Rosa Celia, is among the 50 authors of the book The Post-Pandemia World, which has just been released by Nova Fronteira and was organized by lawyer José Roberto de Castro Neves. Personalities that are references in their fields participated in the work, such as actress Fernanda Torres, journalist and presenter Pedro Bial and businessman Roberto Medina. Copyright will be fully transferred to Pro Criança Cardiac.
The Post-Pandemic World brings reflections on the before and after Covid-19 as a determining episode in this century and debates the consequences of recent political, health and economic actions. What should we expect for our future and the future of the next generations? A drastic transformation in everything human? Or just the return of the world as it always was?
In the book, personalities give their opinion on the main spheres of human action, taking into account each of their complexities and dilemmas: cardiologist Rosa Célia wrote about the importance of social projects and the interface of hers, Pro Criança Cardiac, with the own life story. The importance of the third sector, reinforced in times of pandemic, is also in Dr. Rosa’s text, who hopes that, from everything that is being experienced, there will be some learning for the future.
Among her considerations is also the role of medical institutions beyond caring for patients infected by the coronavirus. For her, part of worrying about those who are at home and suffering the effects of isolation, who are without basic goods, without housing, for example.
Dr. Rosa believes that the pandemic brought about the mobilization of people and institutions, making everyone more generous, whether in the form of partnerships or individually. She saw this happen up close at Pro Criança and the number of donations increased, despite the difficulties.
“I have great hope that these changes in trajectory will remain, so that more and more people will benefit”, wrote Dr. Rosa, and also brought to reflection the words of businessman Joey Reiman, which, for her, should be valid for life : “Fierce competition is not sustainable. Compassion is. In the decades to come, companies will focus on the business of life and work for the biggest customer of all: humanity.”
Founder and president of Pro Criança is among the 50 authors of “The post-pandemic world”
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CERTIFICATION STRENGTHENS THE PROJECT’S CREDIBILITY WITH CIVIL SOCIETY
Pro Criança Cardiac was approved in the audit process of the 2020-23 Donate Criteria Seal, with 49 points out of a possible 52, and qualified with the A+ Seal.
The Doar Management and Transparency Seal Certificate, achieved by Pro Criança this July, is from Instituto Doar and means that the institution becomes part of a group that has also achieved the quality standard defined by the Institute.
The objective of Instituto Doar is to guarantee standards that help donors, financiers and supporters make decisions. For Pro, it is another supporter of the network that takes care of needy children with heart disease.
Among the institutions that acquired the Seal are ABRACESOLIDÁRIO, Brazil Foundation, Hospital Pequeno Príncipe, Instituto Guga Kuerten, Lar Menino Deus, Pró-Saber SP, as well as others that are references in their areas: Education, Health, Sports, among others.
The seal is based on the main international certification models for civil society organizations in relation to codes of conduct that adopt and judge as standards the excellence of strategy, governance, communication, financing strategy, accountability and other aspects.
ABOUT DOAR INSTITUTE
In addition to the Seal, the Best NGOs, PQGT, Transparent NGO and Most Liked Ranking certifications are part of the Institute, from the international organization Instituto Donar. In Brazil, they began their work in 2012 at the NGO Brasil event, when they had the opportunity to mobilize the more than 500 organizations that were present at the event.