FAMÍLIAS NO BRASIL THE GRANDPARENTS OF SICK CHILDREN : A NEW PERSPECTIVE FOR RESEARCH WITH FAMILIES IN BRAZIL

Due to the global aging phenomenon, the possibilities of three or more generations coexisting in the family has significantly increased. Thus, the bonds between grandparents and grandchildren have also become stronger. Brazilian literature already indicates the influence of the relationship and the presence of the third generation in the family in daily contexts, but only two studies actually address the situation of the grandchild’s disease. The aim of this study was to formulate a few considerations on the matter, grounded in recent literature that addresses the impact and experience of the grandchild’s disease on grandparents and their role when their grandchild is sick. From this, we design paths and perspectives for new Brazilian studies focusing on the grandparents when one of their grandchildren is sick. We believe it is important to advance in this area in order to promote the comprehensive care of children and family based on scientific evidence.


INTRODUCTION
In Brazil and the world today, we are witnessing the phenomenon of an increase in human longevity.In 2000, the expectation of life for Brazilians was 68 years; in 2011, data from the Brazilian Institute of Geography and Statistics (IBGE) indicated that this number had risen to 73.With this, society has also been undergoing a transformation in the realm of family relationships, especially concerning intergenerational relationships.Grandparents are becoming grandparents earlier and are experiencing this role for longer.Today, they are considered "able", that is, at an appropriate or more common age to play this role, upon becoming grandparents for the first time between 39 and 60 years of age.Early grandparents are those who have grandchildren before they turn 38 years of age. 1 In the United States, nearly 50% of the people become grandparents between 49 and 53 years of age.In France, it is estimated that 80% of the grandparents are over 65, and of these, 50% have already become great-grandparents.In England: 50% of the grandparents are under 65. 2 This scenario exemplifies the fact that today the probability of three or even four generations coexisting in the family is high.
In addition, with the increase in the divorce rate, the insertion of the woman in the work field, the growing index of single parents and, in Brazil, the high cost of elementary school, what has arisen is the increase in the importance of the grandparents in the family nucleus.They, now much younger, have become more active and participative within families.][3] Research in Brazil already recognizes the role and influence of the grandparents in the family and the transformation in the relationship between the grandparents and the grandchildren, as well as between the grandparents and their adult children, proving just how important this relationship is and how it can determine changes and directioning in the family's daily routine.
][6] One recent study investigated the importance of intergenerational relationships in the family of a child with special needs.In this study, the authors found that the families in this context count on the grandparents as a key source of support and that these grandparents put off or abandon plans (e.g.trips, retirement) so that they can wholly dedicate themselves to their child's family.The authors even report having found triple concerns on the part of the grandparents -with their son/ daughter, with the sick grandchild, and with the healthy siblings -and that, in general, the feelings regarding their grandchild's condition of special needs are similar to those of the parents themselves, but with less possibility of being shared, divided, and, consequently, cared for. 7he aforementioned data have yet to be published in the Brazilian context, having found only one such article to date that had evaluated the experience of the grandparents when one of their children is ill. 8In this last case, the suffering of the grandparents is evident and underscores the need for further investigation, which has been scarce in contexts of disease in Brazil.The authors emphasize that the grandparents were not heard or considered part of the patient's professional care, even in contexts centered around the child and the family.
Faced with the evidence found in Brazilian literature, one can perceive the importance of the grandparents' role in the family and the impact that the intergenerational relationships can have on the family dynamic in common everyday situations, but the movement of Brazilian researchers to investigate these relationships in the context of disease is still rather weak.
Nevertheless, international literature on the issue has already published a number of studies that have the grandparents not only as the focus, but also as subjects of the research, and within the realm of disease or hospitalization of one of their grandchildren.
Hence, the present article aims to stimulate and encourage the development of Brazilian studies from this new perspective: intergenerational relationships when a child is ill.This is a reflective essay, constructed from recent scientific literature, aimed at providing material to better understand this theme, as well as to generate new questions and research perspectives for the Brazilian society.

THE IMPACT AND THE EXPERIENCE OF THE GR ANDCHILD'S DISEASE FOR THE GR ANDPARENTS
When faced with a severe illness, the grandparents describe their feeling in a manner similar to that of the parents themselves: shock, anguish, profound sadness, and fear are a few of the examples of the reported reactions. 9For them, seeing their grandchild ill goes against everything they imagined and dreamed of for their grandparent lives, and the dream of being a grandparent is often shattered by the diagnosis.
4,15 The grandparents do not hesitate to offer help.Upon being asked about their experience, they often remember important changes in their own daily routines with the notification of the illness and during its treatment. 12,15 t is as if their own lives were put on a second tier.They make themselves available to give all practical, instrumental, financial, and emotional support that their child's family may need to deal with the new demands resulting from the illness.They take it upon themselves to coordinate their child's household and all the demands of their family so that they can concentrate on caring for their ill child.
As a part of this role, the grandparents cancel or put off plans that they had made for themselves and begin to give unconditional support to their child. 11,15 hey assume the responsibility of caring for other grandchildren so that their children can fully dedicate themselves to their sick children and seek to maintain the family life flowing as normally as possible.One study indicated, as an encumbrance of the grandparents, maintaining the family united, that is, being the tie between what happens inside and outside of the hospital and maintaining a balance, especially so that the sick grandchild and the healthy grandchildren receive the due attention from their parents. 14n addition, some studies have indicated that the grandparents take it upon themselves to face the difficult task of listening to the reports of suffering from their children and their spouses, who are passing through the experience of having a sick child. 9,10,14,15This task is, often times, a heavy burden for the grandparents, given that it increases in them the feelings of impotence and anguish in the face of their grandchild's illness.Moreover, the aforementioned lack of support lines for the grandparents, together with the burden of hearing the suffering of their own children, leads them to suffering and isolation in their own experience.
14,15 Nevertheless, there is still a challenge for the grandparents, who, as such, must recognize that there are limits and that these limits should be observed to prevent conflict within the relationship.They recognize the importance of understanding the independence and self-determination of the parents of the sick child, respecting their decisions and autonomy, balancing this with advice and their own desire to be present at all times. 10,14,15The grandparents continue to support, in that which is possible and necessary, many times even becoming the backbone of the rest of the family.However, they must understand and respect that the greater responsibility, and who will take the lead, lies in the parents' hands.Anything to the contrary, and additional conflicts and suffering will be inevitable.
0][11] One study broadened this description to a 'tripled suffering', since, in addition to the aforementioned elements, the grandparents also suffer upon seeing their other grandchildren -healthy siblings -being inevitably affected by the experience. 12espite such a heavy emotional load being deposited upon them in such situations, there is evidence in American studies that the grandparents believe that they should hold their own feelings back.Thus, they believe that they are helping their adult child's family, since they do not become an additional burden and, upon suppressing their own emotions, they hope to present themselves as more available and strong enough to provide support to their children. 9,11owever, this attitude often comes at a high price, as the grandparents are unable to find other sources of support or means through which to express their own feelings, which unleashes physical and emotional problems.
One recent study, which investigated the prevalence of stress in 221 grandmothers, with 87 grandmothers of children with cancer and 134 controls, found that the grandmothers of children with cancer are significantly more exposed to stress and are more prone to developing depression and other psychological symptoms. 13mong the grandparents' needs, information and inclusion are the most critical.The grandparents receive information on the state of health of their grandchildren, primarily through their children, but feel dissatisfied for not being considered part of the immediate family by the medical professionals to such a degree that they would be included in the sharing of medical information.The grandparents would like to receive information on the health of the grandchild from the healthcare staff itself and have direct access to them for the clarification of doubts that, many times, they have but their children do not. 10,11ven if they are caretakers or switch on and off with the parents during hospitalization, the grandparents perceive that the staff often wait for the parents to arrive to pass on information or convey specific information to the grandparents quickly and superficially, waiting for the parents to arrive to then give the full report.][12]14

THE ROLE OF THE GR ANDPARENTS WHEN ONE OF THEIR GR ANDCHILDREN IS SICK
When faced with their grandchild's illness, the grandparents, investigated in different cultures and contexts, indicate

CONCLUDING REMARKS: NEW DIRECTIONS FOR RESEARCH IN BR AZIL
Faced with that presented above, in which an overview of what has been investigated with the population both inside and outside of Brazil, it can be concluded that the grandparents lack the due attention from healthcare researchers.
Studies that have focused on the grandparents as the core subjects and focus of research, in different contexts of their grandchildren's disease, are encouraged so as to broaden the knowledge surrounding the range of feelings and emotions lived by them.In addition, qualitative studies with this focus will also aid the researcher in better understanding what the true needs of this population are and what type of resource network is available -or not -to them to confront this situation.
The family relationships of the grandparents also deserve investigation.How were the relationships before and after the disease, in what way have they been modified?Relationships with the sick child's parents, with their siblings, with the healthy and the sick grandchildren, in what manner do they act during and after the disease?How does the relationship proceed between the grandparents when the grandchild is sick?
The literature presented in this study clearly indicated that the grandparents still do not feel that they are considered part of the family by the medical professionals and that they do not truly appreciate their recognition of their own suffering when experiencing their grandchild's illness.Hence, studies that evaluate the perspective of healthcare professionals as regards the participation and inclusion of the grandparents is warranted, since a new way of thinking about the family must impact the interdisciplinary team so that the medical care is also broadened and offered to the grandparents.
It is important to emphasize that, much like the renowned Canadian researchers on the family, it is not the intention of this text to "romanticize" the figure of the grandparents; 11 the literature itself indicates the presence and possibility of conflict that can exist within the family, both inside and outside of crisis situations.
Nonetheless, the body of scientific evidence that reflects the influence and the impact of the grandparents needs to be considered by the professionals, as does the impact of the grandparents' experience.Through these measures and progress in research, it thus becomes possible to think about this issue in Brazil as well, through interventions and even public policies geared toward the grandparents in such a way as to minimize their suffering and promote a more complete attention to healthcare.