How the pandemic impacted the emotional and social well-being of boys and girls with cerebral palsy – UNCiencia

How the pandemic impacted the emotional and social well-being of boys and girls with cerebral palsy

Isolation could have affected not only the clinical of this group. Research teams from UNC and Conicet investigated the perceptions of those in charge of care. Despite the negative aspects, the possibilities of family reunion and self-care options were appreciated. [02.05.2024]

By Maria Jose Villalba
Drafting UNScience
[email protected]

Although lower rates of severity and mortality from Covid-19 were reported in children and adolescents, this is a segment strongly affected by the pandemic and its containment measures, having been deprived of their school and social space.

These conditions related to isolation especially influenced children and adolescents with cerebral palsy, who, in addition to being part of the vulnerable population with higher risks of complications due to the virus, saw their access to rehabilitation therapies and participation in social activities limited.

In this framework, a research team made up of professionals from the Faculty of Medical Sciences of the UNC and the Center for Research and Studies on Culture and Society (Ciecs) of Conicet undertook a study to find out how these confinement conditions could have influenced the social and emotional well-being of this segment.

“It was found that the pandemic affected psychosocial dimensions of health such as psychological and emotional well-being, relationships with peers and school environment. The qualitative analysis reinforced these findings,” the study indicates among its main results.

A distinctive fact emerged from the repeated statements regarding the positive assessment of self-care; That is, the forms of care that are carried out by the people who need it themselves or by immediate members of their family or community group, and in which health professionals do not directly intervene.

“People appreciated the possibilities for family reunion and self-care options that confinement provided. Although these were not all cases and surely the socioeconomic level is a variable to consider, the repetition of these manifestations caught our attention. Some mothers positively considered the fact that the pandemic has forced them to become therapists and the achievements achieved as a result,” details Francisco Fantini, sociologist and one of the authors of the study.

Cerebral palsy from a comprehensive perspective

Cerebral palsy is defined as developmental and postural disorders that cause a limitation in the activity of daily living due to non-progressive alterations that occur in the brain during the first years of life.

Its prevalence is estimated between two to three cases per 1,000 live births, making it the most common motor disability in childhood.

The impacts of the Covid-19 pandemic on people’s health were the subject of countless scientific articles. In Argentina, the psychosocial effects were particularly investigated in children and adolescents without disabilities. However, there are few studies aimed at cerebral palsy and these focused their attention on physical health indicators.

For Natalia Herrera Sterren, co-author of the study, the contributions of social sciences on health issues are very important to complement the view. “Our investigations refer to a problem that goes beyond the clinical and involves a multiplicity of health determinations that include perceptions of quality of life,” explains the specialist.

Along these lines, the research team put a comprehensive, person-centered view at the time of the investigation and for this they worked with health-related quality of life (HRQoL) indicators, which allow health to be assessed in multiple dimensions, incorporating the perspective of the individuals themselves.

“These indicators inform how children and adolescents feel in relation to certain aspects of their lives. We found that participation in recreational activities, the autonomy to go from one place to another or to do daily activities or the sensations of pain and discomfort in the body can be greatly affected in the child and adolescent population with cerebral palsy,” details Silvina Berra, member of the research team.

Regarding the relevance of the methodology, the researcher clarifies that health-related quality of life indicators are very useful for professional practices because they provide different and complementary information to that usually used in the clinic.

“They make it possible to know dimensions of quality of life specifically affected by cerebral palsy, to evaluate the evolution of people and assess the results of some therapies. Furthermore, due to the type of nuances addressed, people often feel that attention is paid to aspects of their life that are very relevant to themselves and that the clinical or functional indicators, by themselves, are not able to capture,” describes Berra.

What do those who care for perceive?

The research team carried out an observational study in a population of mothers, fathers and caregivers of children and adolescents with a diagnosis of cerebral palsy between 3 and 24 years old.

The data collection was carried out in two stages, both cross-sectional, between the months of May and November 2019 and in a second moment between January and March 2021 (when the measures to control the transmission of the virus were still in force). Sars-Cov-2).

In total, there were 98 people who voluntarily answered questionnaires in both stages. For the analysis and assessment of these data, tools adapted and tested in Argentina were used and whose use allows collecting both dimensions of health-related quality of life (HRQoL) common to any population and those aspects that may be specifically affected by cerebral palsy. .

Thus, data were obtained on physical well-being, psychological well-being, family life, friends and school environment, as well as aspects related to emotional well-being, social acceptance, participation, autonomy, pain and access to services, among others.

The research shows that the scores for items such as “participation”, “emotional well-being”, “social well-being” and “school environment” or those for “psychological well-being” and “friends” were lower during the pandemic compared to 2019.

Already in the second stage of the study, the team added the following open question to the questionnaires: “In your opinion, did the circumstances caused by the Covid-19 pandemic affect your child’s health in any way? As?”.

In this way, the scientific team detected a clear impact of the health situation on psychosocial dimensions of health. “People expressed with some recurrence affectation due to the interruption of therapies and treatments and deterioration in the bond with peers,” points out Herrera Sterren.

Furthermore, a relevant piece of information emerged from the qualitative inquiry: the increase and positive assessment of self-care. “We noticed that the difficulty of accessing conventional therapies increased care tasks at home and the results of this self-care are valued positively,” explains Francisco Fantini.

However, the researcher highlights as the other side of this situation that “care tasks are deeply feminized. To illustrate, we can say that in 2021 we openly invited caregivers to carry out a digital survey through social networks and only women joined that call.”

Scientific contributions for health and disability policies

The World Health Organization, in its World Report on Disability, promotes research into the quality of life and well-being of this population and encourages the development of internationally comparable research methodologies.

In harmony, the research team agrees on the need to highlight, through science-based studies, the requirements of children and adolescents with cerebral palsy and those who care for them, so that these inputs can result in health policies.

Cerebral palsy represents a common disability and has a great impact on people’s health and lives. For this reason, providing new knowledge about the experiences of this population is essential.

Research teams from the School of Public Health of the Faculty of Medical Sciences and the Center for Research and Studies on Culture and Society (Ciecs) of the Faculty of Social Sciences and Conicet have been working with this horizon for many years.

These teams address childhood health issues and evaluation of health services and, in particular, work on the implementation of health-related quality of life indicators to assess the impact of diseases and their treatments.

On the other hand, from the Institute of Clinical and Epidemiological Research, Mercedes Ruiz Brünner developed a line of research aimed at developing tools for the clinical and nutritional assessment of children and adolescents with cerebral palsy, an area of ​​research in which even today , and despite the hard work, there is little development in Argentina.

The latest advances of these research groups point to the development of manuals and digital platforms so that professionals from all over the country who work with people with cerebral palsy can learn about the research tools, use them and have that information systematized and organized in relation to the quality of life related to the health of their patients.

“From the perspective of the boys and girls themselves, the psychological and social dimensions of health tend to be more relevant than the physical ones, so there is a very wide field of knowledge to address about health-disease processes from the perspective of social sciences to propose solutions to the health of children and adolescents with cerebral palsy,” says Silvina Berra.

Cover photo: Envato Elements license.
Interior photographs: Envato Elements License and courtesy of the research team.

The study

Article. “Therapies, bonds and quality of life of children and adolescents with cerebral palsy: experiences and perceptions of their caregivers during the pandemic.”

Authorship: Natalia Herrera Sterren, Francisco Fantini and Silvina Berra.

Unit: Center for Research and Studies on Culture and Society (Ciecs), Conicet, National University of Córdoba (UNC).

*Other agencies: Center for Epidemiological and Health Services Research (Ciess), Institute of Clinical and Epidemiological Research, Faculty of Medical Sciences.

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