Supports and relationships between mothers and grandparents of children with disability: talking about intergenerational family solidarity

Abstract

This paper presents the results of the first stage of interinstitutional partnership research with family field studies. The focus of the work is the Family Intergenerational Solidarity (FIS) among grandparents and mothers of children with disabilities. The study aims to describe the support provided by grandparents of children with disabilities and the relationships of FIS established between mothers and grandparents already presented in the literature and to discuss it based on the phenomenon of intergenerational solidarity. To this end, an Integrative Literature Review was performed. Data collection took place in January 2019 through the use of the simple search mechanism in the CAPES Journal Portal, based on keywords, without temporal delimitation. The sample consisted of 25 articles that were read in full and interpreted from the content analysis. The results reveal the presence of three categories of analysis related to support and interpersonal relationships - Grandparents' feelings about a disabled grandchild, Role of grandparents in the care of disabled grandchildren, Factors that influence the offer, or not of support. Based on the information from each category, we discuss the presence of intergenerational solidarity in its different dimensions, highlighting the importance of affective and functional solidarity between mothers and grandparents, which contribute to facing the daily demands in the upbringing and education of a disabled child.

Keywords:
Solidarity; Mothers; Grandparents; Social Support; Child; Disabled Person

Resumo

Apresentam-se os resultados referentes à primeira etapa de uma pesquisa interinstitucional em estudos do campo da família. O foco do trabalho está na Solidariedade Familiar Intergeracional (SFI) entre avós e mães de crianças com deficiências. O objetivo do estudo é descrever os suportes fornecidos pelas avós de crianças com deficiência e as relações de SIF estabelecidas entre as mães e avós já apresentados na literatura e discuti-los à luz do fenômeno da Solidariedade Intergeracional. Para tanto, foi realizada uma Revisão Integrativa da Literatura. A coleta de dados ocorreu em janeiro de 2019, por meio do emprego do mecanismo busca simples no Portal de Periódicos da CAPES, usando palavras-chave sem delimitação temporal. A amostra constou de 25 artigos que foram lidos na íntegra e interpretados com base na análise de conteúdo. Os resultados revelam a presença de três categorias de análise relacionadas aos apoios e relações interpessoais – Sentimentos dos avós sobre o neto com deficiência, Papel dos avós no cuidado dos netos com deficiência, Fatores que influenciam na oferta ou não do apoio. Com base nas informações de cada categoria, discute-se a presença de solidariedade intergeracional em suas distintas dimensões, com destaque para a importância da solidariedade afetiva e funcional entre mães e avós que contribuem para o enfrentamento das demandas cotidianas na criação e educação de uma criança com deficiência.

Keywords:
Solidariedade; Mães; Avós; Apoio Social; Criança; Deficiência Física

1 Introduction

Intergenerational Family Solidarity (IFS) is defined as the interdependence between the individuals that make up a family, considering their affective and financial exchanges, any intention of care, help, and/or support (Rodrigues, 2013). Bengtson & Roberts (1991) have investigated IFS to understand how family relationships occur and how individuals support and cooperate between different generations, for mutual benefit.

Currently, IFS has seven dimensions: affective, associative, consensual, functional given and received, normative, structural, and conflictual. Affective solidarity includes positive feelings and perceptions that family members have about their relationship with other family members. Associative solidarity is the type and frequency of contacts among family members. Consensual solidarity is the agreement or not of opinions, values ​​, and orientations among generations. Functional solidarity given and received includes assistance, the support is given and received among family members. Normative solidarity is about expectations regarding the obligations of children and parents, and also about the norms about the importance of family values. Structural solidarity is the geographical proximity between the two-family elements. Conflictful solidarity refers to the degree of criticism is the degree of criticism, tension, or disagreement among family members (Bengtson & Roberts, 1991).

Recently, the intergenerational ambivalence dimension has been added. It is the possibility of internal contradictions and conflicts in the relationship between parents and adult children (Luescher & Pillemer, 1998).

Studies focused on the relationship between grandparents and parents of children with disabilities have indicated that the presence of a disabled grandchild influences family relationships and the constitution of grandparent roles (Mirfin-Veitch et al., 1997; Woodbridge et al., 2011). The relationships established in these family members are directly related to the FIS, that is, the support relationship in the parent-child dyad.

In a study on the experiences of grandparents with grandchildren with disabilities, Yamashiro & Matsukura (2015) found that grandmothers offer different types of assistance and constitute important sources of support for families. This is because the families of children with disabilities also have to deal, in addition to the disability, with the fact that the children are clinically fragile and socially vulnerable (Neves & Cabral, 2008).

There are many demands in daily lives in the context of families who have a child with a severe disability. Also, there is an increase in care, tasks, and daily activities for the demands that a child with a disability requires, depending on the degree of autonomy and independence of the child.

Therefore, there is a need for support to all these family members, but especially to mothers, as we have individual and collective expectations, considering the economic, social, cultural, moral, and sexist dimensions of which care falls primarily on women. Thus, when there is a child with severe disabilities, the demands and desirable support are intensified, particularly the emotional and instrumental ones are even more required. This support can come from different sources, including services and professionals, friends, and extended family, and, in this sense, especially grandmothers.

Given this context, the investigative question of this work seeks to answer whether the support and relationships established between mothers and grandparents of children with disabilities, described in the literature, constitute the construct of intergenerational solidarity. Therefore, this study aims to describe the types of support provided by the grandparents of children with disabilities and the IFS relationships established between mothers and grandparents and to discuss it based on the phenomenon of intergenerational solidarity.

2 Method

We used Integrative Literature Review, according to Mendes et al. (2008), who present the subsidies about general concepts, stages, and applicability of the integrative review. The authors emphasize that this research method allows the synthesis of multiple published studies and allows general conclusions about a particular area of study.

Regarding methodological procedures, Mendes et al. (2008) indicate six stages of the integrative literature review: (1^st) the identification of the theme and selection of the hypothesis or research question for the elaboration of the integrative review; (2^nd) the establishment of inclusion and exclusion criteria of studies/sampling or literature search; (3^rd) the definition of the information to be extracted from the selected studies/categorization of the studies; (4^th) the evaluation of the studies included in the integrative review; (5^th) the interpretation of results; (6^th) the presentation of the review/synthesis of knowledge.

Data collection took place in January 2019 using the simple search mechanism on the CAPES Journal Portal. We applied the following expressions: “intergenerational solidarity” disabilities; “grandparents intergenerational solidarity”; “grandchildren intergenerational solidarity” “grandmothers intergenerational solidarity”. The inclusion criteria were to retrieving original articles and literature reviews, without time limitation, in English, Portuguese, and Spanish. According to the exclusion criteria, we removed articles without full text and not suitable for the research scope.

Based on actions 1 to 3 described by Mendes et al. (2008), we initially obtained 168 articles, published from 1994 to 2016. After a more detailed evaluation of the studies, the corpus of analysis was composed of 25 articles, the main reason for not adapting to the scope of the research. Figure 1 shows the flowchart of the article selection process.

Figure 1
Flowchart of the article selection process.

The search tools used were the “advanced by subject” and “word in the title” functionalities, based on the associative combination between those descriptors.

After the procedures to locate the 25 articles related to the research theme, they were read, and through the thematic analysis, we identified repeated appearances of concepts and experiences that made up thematic categories for interpretation and inference. For that, the data were tabulated in spreadsheets containing information about categories and dimensions related to support and Family Intergenerational Solidarity. The articles were read in full to establish the categories. For the content analysis of the articles, three stages were designed: pre-analysis, exploration, and interpretation of the contents (Bardin, 2011). We consulted expert judges who assessed the validity of the categorization performed to ensure the reliability of the data extracted from the studies.

3 Results

Initially, we described the 25 articles retrieved from the database, identifying the journal-title, authorship, country, and the number of articles per journal (Table 1).

Table 1
Identification of selected articles for analysis of support and relationships between mothers and grandparents of children with disabilities.

Title	Country	Articles	Authorship
Education & Treatment of Children	USA	2	Baranowski, M. D., & Schilmoeller, G. L.
			Gardner, J. E., & Scherman, A.
Educational Gerontology	USA	2	Lee, M., & Gardner, J. E.
			Hillmann, J.
Journal of Applied Research in Intellectual Disabilities	England	2	Hastings, R. P., Thomas, H., & Delwiche, N.
			Sullivan, A., Winograd, G., Verkuilen, J., & Fish, M.
Academic Journal of Business, Administration, Law and Social Sciences	Austria	1	Mano, E.
Australasian Journal on Ageing	Australia	1	Woodbridge, S., Buys, L., & Miller, E.
Baskent University Journal of Education	Turkey	1	Kresak, K.M., & Gallagher, P. A.
Child and Family Social Work	England	1	Mitchell, W.
Child: Care, Health & Development	England	1	Margetts, J. K., Le Couteur, A., & Croom, S.
Estudos Interdisciplinares sobre o Envelhecimento	Brazil	1	Yamashiro, J. A., & Matsukura,T.S.
Family Relations	England	1	Mirfin-Veitch, B., Bray, A., & Watson, M.
International Journal of Developmental Disabilities	England	1	Lee, M., & Gardner, J. E.
Issues in Comprehensive Pediatric Nursing	USA	1	Katz, S., & Kessel, L.
Journal of Advanced Nursing	England	1	Ravindran, V. P., & Rempel, G. R.
Journal of Aging Studies	USA	1	Woodbridge, S., Buys, L., & Miller, E.
Journal of Child and Family Studies	USA	1	Hornby, G., & Asworth, T.
Journal of Early and Intensive Behavior Intervention	USA	1	Neely-Barnes, S., & Dia, D.
Journal of Early Intervention	USA	1	Kresak, K., Gallagher, P., & Kelley, S. J.
Journal of Family Social Work	USA	1	Vanegas, S., & Abdelrahim, R.
Psicologia em Estudo	Brazil	1	Yamashiro, J. A., & Matsukura, T. S.
Psicologia: teoria e pesquisa	Brazil	1	Rezende, I. G., Krom, M., & Yamada, M. O.
Support for Learning	England	1	Mitchell, W.
Revista Brasileira de Educação Especial	Brazil	1	Matsukura, T. S., & Yamashiro, J. A.

We can observe that the USA and England are the countries with the most articles published on the theme investigated. The central theme of research has been published in vehicles belonging to different areas of knowledge, such as education, psychology, nursing, aging, families, child development, among others. Then, the results are based on the content analysis carried out in the articles.

In general, the studies show a diversity of themes that have been researched from an intergenerational perspective when having a disabled grandchild, for example, intergenerational support (Yamashiro & Matsukura, 2015), the functioning of the family of children with autism (Mano, 2016; Sullivan et al., 2012; Margetts et al., 2006), the role of grandparents in support, family involvement and beliefs (Mitchell, 2007; Lee & Gardner, 2015; Gardner & Scherman, 1994); supportive practices in everyday life (Matsukura & Yamashiro, 2012); grandparents’ quality of life (Kresak et al., 2014). Also, we found studies of literature review on the topic, such as those by Hillman (2007) and Kresak et al. (2014).

Regarding the thematic content, despite all the social changes that have occurred about 21^st-century families, aspects related to certain concepts, composition, and interaction, the importance of intergenerational relationships remains (Mitchell, 2008).

All studies in line with a vast literature reported that the birth of a child is a time of celebration for families. for grandparents specifically, the birth of a grandson is experienced with a variety of emotions such as joy and optimism about the future, enthusiasm about the transmission of parental skills and knowledge to their child, feelings of anxiety and apprehension about the role to be a grandmother/grandfather. In this sense, being a grandparent is an important and valued occupational role for many older adults, who often have opinions about the type of grandparents they will be and also imagine what they will teach their grandchild (Woodbridge et al., 2011). However, some studies also showed the impact of the birth of a child with a disability on the family, affecting mothers and grandparents in different ways.

According to the study by Dantas et al. (2010), the birth of a child with cerebral palsy imposes new demands on the family and will require mobilizations and reorganization of the family dynamics to care for the child and re-signify parenting.

In the studies by Woodbridge et al. (2011), Baranowski & Schilmoeller (1999), and Mirfin-Veitch et al. (1997), they showed that when a child is born or acquires a disability, grandparents are often a source of support for their family. Baranowski & Schilmoeller (1999) found that grandparents can do many things to relieve the stress of the nuclear family (father/mother) such as seeking strategies to deal with the child, to buy, to seek information and services from the community, offer emotional support and keep parents' hope alive.

Hornby & Ashworth (1994) detected the emotional support given by grandparents, with parents of children with disabilities reported that half of all grandparents participating in the study always understand any problems related to their child with disabilities and a third of them were always willing to listen to parents discuss problems.

Yamashiro & Matsukura (2014) affirmed that the support practices exercised in the family context are part of the grandparents' daily lives and are an important source of support for mothers and grandchildren. They also highlighted the importance of intergenerational relationships, considering the benefits they produce for both generations involved.

Lee & Gardner (2015) showed reports of a mother describing how grandparents were involved and provided different types of support:

Mother 4: My parents and parents-in-law are helping me a lot. As my parents live close to me, they help me with housework and babysitting (Lee & Gardner, 2015, p. 213).

Mother 4: If I am not available to take care of my child, my mother does it for me. My mother sits down to Jun Young who has a disability, or his older brother. Sometimes, she babysits both children. When Jun Young was young, he was frequently hospitalized. While Jun Young and I were in the hospital, my mother took care of Jun Young's brother. It was great to support me (Lee & Gardner, 2015, p. 214).

Mother 4: I feel that my mother cares about me and my son, but more about me than my son. Sometimes, she says to my son, “Your mother's waist is hurting. Please walk alone or “Your mother suffers a lot.” I think that kind of expression is my parents' concern for me. I know they care about their daughter, who raises a child with a disability (Lee & Gardner, 2015, p. 215).

Studies described this “double concern” of grandparents since they are concerned with both children and grandchildren with disabilities. However, when studying the families of school children with complex congenital heart diseases, Ravindran & Rempel (2010) showed the “triple concern”, because they showed the concern of grandparents to their grandson, brother of the child with disabilities, whose care is often assumed by the grandparents.

Hastings et al. (2002) studied the stress levels in families of children with disabilities considering fathers, mothers, and grandparents. The research also addressed the presence of conflicts and the offer of support. Grandparents’ support and conflict were associated with mothers' stress classifications.

Considering that the presence of a child with a disability causes significant changes in the daily lives of families and the dynamics of their functioning, both members of the nuclear family and those belonging to the extended family are affected. Thus, grandparents can experience negative emotions and stress due to the need to adjust their expectations and interactions (Woodbridge et al., 2009, 2011). The literature reveals that some grandparents described the challenges associated with meeting the needs of all grandchildren with a disability:

I think is difficult, because I always believed in treating everyone [the same] and you can't. When the twins were very small, I felt that they lost a lot, because you had to spend a lot of time with the little one [one with a disability]. It is not so bad now, because they understand more what is happening ... [but] it restricts you. (# 2 - F, 61 years old, GS with mild cerebral palsy) (Woodbridge et al., 2011, p. 10).

Family caregivers come from different cultural backgrounds, which directly affects their opinions about disability (Neely-Barnes & Dia, 2008).

The study by Lee & Gardner (2015) shows that, in traditional Korean society, people with disabilities are perceived as people unable to contribute positively to their family and society. Thus, having a family member with a disability is seen as something shameful for the whole family. Family members who do not have a disability avoid sharing the existence of a family member with such impairment to others. Thus, the mothers of children with cerebral palsy reported on the feeling of denial and frustration that the grandparents felt when they learned that they would have a disabled grandchild. The following are excerpts from the study to illustrate this finding:

Mother 2: The paternal grandparents did not want to believe that their grandson had cerebral palsy, so they wanted to go to another hospital to check his disability. When another hospital gave the same result, my father-in-law became ill. So, he went to see a fortune teller find out about Soo Hoon's future. This tells me how anxious he felt (Lee & Gardner, 2015, p. 212).

Mother 4: When my son was young, my father-in-law had an indifference to my son's disability and development. We, my father-in-law and I, did not specifically talk about his acceptance of my son's disability, but he started praising me for trying so hard with my son's education today. However, he did not show [sic] this generous attitude when we first learned about my son's disability (Lee & Gardner, 2015, p. 212).

Also, these mothers reported that their grandparents expressed a desire to hide their grandchildren from the people.

Mother 2: The child's paternal grandparents adore Soo Hoon. Even if they like my son and think of him as a grandson, it is still difficult for them to accept him as a grandson in front of others. One day, I brought my son to his grandparents' house and they hesitated to greet their neighbors [sic] because of me and my son. Then I realized that they don't like to show Soo Hoon to people they know (Lee & Gardner, 2015, p. 213).

Katz & Kessel (2002) carried out a study by Israel and pointed out that many grandparents, understanding that their grandchildren's disability is irreversible, express despair, and helplessness with the situation. In many cases, grandparents felt protective of their own families and with a need for privacy, being reluctant to discuss all the details of “that thing he has”. However, in this study, the interviewees did not mention feeling the need to hide their grandson or prevent him from being seen in public places.

Rezende et al. (2003) also reported on the created and passed myths between generations related to the healing processes of disabilities. In the study carried out with families in which hearing loss is present between different generations and entities, they claimed that it generated rigidity in the guidelines for help and care determined by the myth of union and borders with the outside world.

The greatest expectation emerges with the lack of knowledge about the disability and is restricted to waiting for a miracle to hear again. In this way, the myth of hearing impairment and the myth of union fit and strengthen each other (Rezende et al., 2003, p. 182).

On the other hand, after grandparents process their shock and disbelief about the diagnosis of a disability, they consider that they have an important role in helping their son and grandchild:

Well, it was like there was a death in the family because you expect to have good children naturally. At first, it was difficult to accept, you know, to believe that this had happened to us... but once you accept, you are there for your daughter, you are there for your grandson (# 2 - F, 61 years, GC mild cerebral palsy) (Woodbridge et al., 2011, p. 6).

The workload, yes, it is heavy. That's how I wonder how they handle 51 weeks of the year. We only have them for a week at a time. It's not easy. People say “oh, are you happy to have them?” And I say no. [But] no one takes them to care for them for a long time. They go to [organization break] for a day, for a few hours and there is a friend who will take them for a few hours, but having them constantly day and night ... is draining (# 4 - F, 70 years, 2 GD - 10 years and 16 years - with cerebral palsy) (Woodbridge et al., 2011, p. 8).

I think he needs to be on our level [instead of on the floor] and I find it frustrating that [mom] always leaves him on the floor and I don't think this is good for the child and it frustrates me, but you know, I am learning to hold my tongue ... to be much more subtle (# 2 - F, 61 years old, 5 years old GS with mild cerebral palsy) (Woodbridge et al., 2011, p. 8).

It is difficult because you cannot achieve that deep relationship that you can with others. We don't have the same kind of relationship. It is much more superficial because you cannot have that interaction that you have with other children... while I can talk to him, the conversation is not very deep because you will not get anything back, apart from a wave or a smile (# 2 - F, 61 years old, mild cerebral palsy GS) (Woodbridge et al., 2011, p. 9).

Some grandparents of children with disabilities reported that they are grateful to be in their grandchildren's lives and feel positive for what grandchildren can learn, despite their disability. They reported that they feel like doing even more so that their grandchildren reach maximum power. The greatest perception of mothers in this study was that most grandparents accept their disabled grandchild, regardless of the way he behaves (Baranowski & Schilmoeller, 1999).

Katz & Kessel (2002) indicated some factors that can harm intergenerational relationships, such as unresolved conflicts, educational and health levels, and geographical distance among family members.

In the study by Lee & Gardner (2015), the geographical distance is evidenced with reports from a mother about the grandparents who lived nearby, providing more support than the grandparents who lived far away.

Mother 2: Soo Hoon often sees his paternal grandparents because they live close to us, but he rarely sees his maternal grandparents, as it takes 2 hours to visit them. Soo Hoon gets along with his paternal grandparents and can spend time with them without me. However, he seems to be clumsy and afraid of his maternal grandparents. Even my parents don't know how to treat him with his behavior (Lee & Gardner, 2015, p. 214).

Mother 2: I don't feel like I'm getting help nowadays because I am the one who raised him and we don't live near my parents' house. Although my son's paternal grandparents live close to us, I don't feel comfortable asking for help as I do with my parents. I believe it would help a lot if my mother lived close to us (Lee & Gardner, 2015, p. 215).

However, Lee & Gardner (2010) reported that emotional support can be provided remotely and the media and technology contribute such as letters, emails, phone, and video calls.

Another factor indicated as influencing the level of support was the age of the grandparents. If grandparents are older, unwell, or in poor health, parents may not want to burden them, which results in a low level of support provided by grandparents (Hornby & Ashworth, 1994; Baranowski & Schilmoeller, 1999).

Mirfin-Veitch et al. (1997) pointed out that access to information about the disability can alleviate any urgent fears about the effect of the disability or health concerns related to the disability, consequently facilitating mutual support and interaction between parents and grandparents.

Lee & Gardner (2015) also referred that the negative adjustment of grandparents to the disability of their grandchildren is often related to the inaccuracy of information about their grandchildren's disability or the perpetuation of traditional philosophical perspectives. The following is the report of a mother who lives with this ignorance and, consequently, judgment by one of the grandparents.

Mother 4: When my family visits Jun Young's grandfather's house, he tells Jun Young to get up and walk. However, Jun Young cannot maintain his standing position, so he has been training with a physical therapist. However, whenever we visit his grandfather, he forces him to stand with the wrong posture. When he does that, I tell him not to do it because that stance makes Jun Young used to the wrong position. However, my father-in-law thinks that the reason Jun Young cannot stand and walk is that I am too lazy to make him practice. His paternal grandfather believes that my son will be healed as children without disabilities, as he receives medical treatment and special education. Because of this strong belief, he forces me to put more effort into the education and treatment of his grandson. This attention gives me a heavy burden (Lee & Gardner, 2015, p. 215).

The interactions experienced by families, especially of the mother-daughter dyad, occur with the offer several forms of support, even though conflicts and difficulties in daily life are present. Thus, according to the studies analyzed, support could be recognized based on the following situations:

Table 2 shows the diversity of support offerings identified in the literature, with emphasis on the socio-emotional actions offered by grandparents to their children.

Table 2
Summary of the support identified in the 25 studies analyzed.

SUPPORT	DESCRIBED SITUATIONS
Instrumental	Shopping, everyday tasks, babysitting
Socio-emotional	Love, affection, empathy, friendship, conversation, listening, parental care, togetherness, commitment such as well-being, loyalty, social bond
Financial	Payment of bills, provision of financial resources
Spiritual	Potentially vital support

• Source: The authors.

The feelings and the role that the grandparents of children with disabilities assume in the daily process for their children are related to the factors that influence the offer of support and, therefore, with the solidarity actions.

Figure 2 shows the results, describing the feelings and roles identified in the studies and, finally, the factors that can impact the supply of supports.

Figure 2
Summary of categories and dimensions related to support and FIS. Source: The authors.

4 Discussion

This study sought to examine the phenomenon of Family Intergenerational Solidarity (FIS) based on the definition of Bengtson & Roberts (1991). The affective dimension, defined by the authors, encompassing the positive feelings and perceptions that family members have about their relationship with other members proved to be necessary for the creation and education of children with disabilities. Together with the affective dimension, the functional dimension proved to be fundamental as families demand support among their members to be able to perform their different occupations in daily life. Elements of the consensual, normative, and conflictual dimensions of Intergenerational Solidarity were approached in the analyzed articles and are closely associated with the cultural, social values ​​, and the history of people's relationships. The associative and structural dimensions occur in these families due to the availability of resources and access to electronic (virtual) means of communication.

We observed that, although the studies dealt more with the relationships among parents, grandparents, and grandchildren, other family members, such as uncles and siblings, were also included in the studies.

Therefore, this integrative literature review enabled to identify different dimensions of FIS based on the objectives of the studies and the characteristics of the researched families, such as their composition (age, gender, health condition of their members), interpersonal relationships, feelings towards disability, prejudice, segregation, geographical distance, values and beliefs that interfere in interpersonal relationships of support and solidarity when there is a disabled child.

The gender is a central theme since we have established that the gender role attributed and represented throughout history for the women, as a provider of functional and affective support, and, for the father, as the main financial and disciplinarian. Thus, daughters would have more frequent contact and exchange more support with their mothers, when compared to children with their fathers (Coimbra & Mendonça, 2013; Ferreira, 2014).

We also should consider socioeconomic levels and changes in the economic and functional dependence of young adults as they can impact intergenerational exchanges, challenging their solidarity bank. Adult children only have the opportunity to take care of their parents financially when their socioeconomic status allows them (Coimbra & Mendonça, 2013).

The understanding by the grandparents about disabilities seemed to be a fundamental aspect of more solidary attitudes and the perception about the support offered.

The perception that individuals have about support will determine the demand for it and the belief in its effectiveness (Antunes & Fontaine, 2010). In this way, a positive perception in given support represents that the individual believes that he is esteemed by the person (s) that make up this support, that they are interested in him, that it is available when it needs it and that it is satisfied with their relationships (Antunes, 1994; Antunes & Fontaine, 1995, 1996, 2000).

In this perspective and based on reading the articles in full, the three categories found (Feelings of grandparents about their disabled grandchild, Role of grandparents in caring for grandchildren with disabilities, Factors that influence support and interactions between grandparents-parents) and their sub-themes suggest that they are closely related.

In an affective and family bond, people are not passive recipients of support since the process is based on the reciprocity of relationships. Thus, the individuals need to develop skills that allow them to search with pertinence and effectiveness in the support they need and being able to also provide support when requested (Vaux, 1988). In this sense, the reciprocal relationship seems to strengthen these bonds.

The different forms of support can be understood as expressions of Intergenerational Family Solidarity, which occurs within a macro-social context and is related to multiple dimensions.

In this sense, and considering that grandparents are participants in the process that involves their grandchild's disability, support programs or interventions can include grandparents and help them define their role, also providing communication and interaction skills with their disabled grandson. This is because families often lack the knowledge, resources, and skills that could help them overcome challenges while raising a child with a disability (Woodbridge et al., 2011; Vanegas & Abdelrahim, 2016).

Grandparents can contribute to the development of the disabled grandchild and favor the interpersonal relationships of family members in their different contexts. For example, the discussion about the school context of children. Thus, the important considerations of Kresak & Gallagher (2014) stand out, in which they emphasize the importance of recognizing that grandparents, especially those who raise grandchildren with disabilities, may not be able to participate in school activities due to health problems, lack of transportation, lack of childcare or limited time, but they can participate in “invisible forms of involvement”, which, directly or indirectly, lead to contributions to the learning of grandchildren. Mitchell (2008) considers the role and importance of grandparents in schools; in particular, intergenerational learning. Schools can begin to include grandparents while providing support to meet their own needs.

5 Final Considerations

This study aimed to identify, based on an integrative literature review, the support and relationships among mothers and grandparents of children with disabilities, discussing the presence of intergenerational solidarity. At the beginning of this study, we adopted a hypothesis that in family situations where there are greater demands by the vulnerability of its members, the support and relationships among mothers and grandparents of children with disabilities constitute solidarity actions between generations. This was confirmed based on an examination of the analyzed literature, especially in the affective solidarity offered by grandmothers, understood as fundamental for mothers to continue their parental role. On the other hand, it is evident the presence of other variables that hinder or limit the offer of support by grandparents to their children and grandchildren. Thus, we concluded that the identification of the variables listed in this study can assist in the therapeutic processes with the families of children with disabilities. The issues that affect the solidarity between mothers and daughters can be considered from a family systemic perspective and favor the development of solidarity actions for both.

• How to cite: Trindade, T. R., Hayashi, M. C. P. I., Lourenço, G. F., Figueiredo, M. O., Silva, C. R. & Martinez, C. M. S. (2020). Supports and relationships between mothers and grandparents of children with disability: talking about intergenerational family solidarity. Cadernos Brasileiros de Terapia Ocupacional. Ahead of Print. https://doi.org/10.4322/2526-8910.ctoAR1951
• Funding Source Fundação de Amparo à Pesquisa do Estado de São Paulo – FAPESP. Process nº 2017/20995-8.

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Publication Dates

• Publication in this collection
  30 Oct 2020
• Date of issue
  Oct-Dec 2020

History

• Received
  31 May 2019
• Reviewed
  17 Oct 2019
• Reviewed
  04 Dec 2019
• Accepted
  27 Feb 2020