Our Parents, Their Grandparents: Parents' Perceptions of Grandparents role in Families of Children with Disabilities

Parenting a child with a disability is often characterized by notions of emotional burden and heavy responsibility, which can lead to parents experiencing increased stress. One significant response to this increased stress as experienced by parents is social support. Grandparents often serve as prominent figures in the limited support network of these parents, their support manifested through instrumental and emotional assistance to both the parents and the grandchildren with disabilities.

The literature shows that the relationship between the parents and grandparents of children with disabilities tends to be complex and challenging, for both generations. The help of grandparents affords most parents some relief from the demands of daily chores; some also receive emotional support from them. On the other hand, other parents experience disappointment and frustration, and the consequent depletion of precious energy, due to the lack of expected support.

To date, most studies conducted on the subject have focused on the perspective of the mothers of children with disabilities. The current study also examines the perceptions of the fathers. Past research has often examined the instrumental and emotional assistance that parents of a child with a disability receive from the child's grandparents, and its implications for them. The current study examines the variety of experiences that shape parents’ perceptions of the instrumental and emotional support received from grandparents, in the context of their past and ongoing relationship with the grandparents.

The purpose of this study is to trace parents' perceptions of the role and place of grandparents in their family, casting light on the parents' views of the grandparents' feelings, while addressing professional responses to their needs.

The primary research question is, what are the perceptions of the parents of a child with a disability with regard to the place of grandparents in the family? The secondary research questions are: What are the experiences that engage parents regarding the instrumental and emotional support received from the grandparents? How do parents perceive the support provided by the child's grandparents, in the context of their past relationship with their parents? How do the parents of a child with a disability experience the grandparents' coping with their child's disability? And what may lead parents to support or have misgivings about the grandparents’ participation in activities dedicated to them in their grandchild’s educational setting?

The study uses a purposeful sampling method, through which the study population is deliberately and carefully selected, in order to provide the information particularly relevant to the research questions and the purpose of the study. The recruitment of parents for the study was made through colleagues, who helped establish contact with parents of children with disabilities whom they know, and utilizing their help in publicizing the study through WhatsApp groups for parents of children with disabilities. A qualitative research method was chosen for the study, using a phenomenological approach shaped by semi-structured in-depth interviews. The study participants included 10 fathers and mothers (5/5) of children aged between 2 and 12, educated in rehabilitative educational settings. The participants all gave their explicit consent to participating in the study. The children of the interviewees all had developmental disabilities and were at different levels of functioning. Eight interviews were conducted by the researcher, and two by the study advisor. The data analysis was done through a content categorical analysis, which guided the researcher in identifying the main themes presented.

Analysis of the findings revealed seven main themes. The first theme deals with understanding the parenting experience of a child with special needs as the basis for understanding the need for the unique support of the child's grandparents. This is the lens through which the following themes were identified and interpreted. The second theme compares the parents' feelings and the feelings they attributed to the grandparents, with respect to the first period following the diagnosis and the feelings that it evoked in them. The third theme focuses on describing the sequence capturing the parents’ expectations, and subsequent disappointments, in relation to support from the grandparents. The fourth theme compares the relationship between the two generations, before and after the birth of the grandchild with the disability. The fifth theme explores the considerations that the parents took into account when sharing information about the grandchild’s disability with the grandparents. The sixth theme relates to the parents' perspective regarding the grandparents' needs and feelings. Finally, the seventh theme refers to the parents' perspective regarding answers for the grandparents, specifically in connection with providing answers in relation to the educational framework of their grandchild with disabilities. 

The discussion shows that the child's disability increases the need for emotional and practical support from the grandparents. The unique situation which the entire family finds itself in tests the degree of intergenerational solidarity in their family, and can reinforce issues surrounding the emotions, communication, dependence, and ambivalence that hitherto defined these relationships.

Among the parental experiences identified is the degree of security that will result in a stable and lasting relationship, versus the disappointment emerging from the lack of support, the latter evoking memories of past pain in the parent-child relationship before the birth of the grandchild with a disability—a phenomenon also described in the literature. Another layer in the delicate fabric of this intergenerational relationship emerges from the parents’ perspectives regarding the grandparents' treatment of their child's disabilities. The grandparents' reactions to the grandchild's disability, accepting or rejecting the diagnosis, may force the parent to confront anew similar processes that he or she had gone through and may still be going through. The parent experiences the reactions of the grandparents as those of external figures representing the perceptions of society at large; but, at the same time, also as those of internal voices in the inner world of the parents. This study shows that disappointment with emotional support was also attributed to the personality traits of the grandparents, which are experienced more keenly as the need for their support increases. The study also proposes that receiving support may also be accompanied by experiences that may impair the feelings of the parents who accept it. The study revealed mixed and ambivalent feelings about the support of the grandparents. It seems that this internal and interpersonal conduct, along with the help given to parents for their emotional support, or its painful absence, is influential in shaping parents’ perceptions of grandparents' support.

Parents experiencing the pain and frustration evoked by disappointment about the grandparents’ support, whether received or absent, must devote much by way of their resources into coping with the frustration that accompanies contact with the grandparents. In contrast, parents who receive helpful and supportive assistance from grandparents can direct their energies toward the many struggles they face.
 

The importance of this study lies in its contribution to the enrichment of the existing body of research concerned with the relationship between the parents and grandparents of children with disabilities. This knowledge will be of great importance to the families, and to the professionals working with them. Understanding the significance of the levels of emotional support received, together with an appreciation of the parents’ perspective with respect to the responses of the grandparents—particularly with regard to participation in activities in the grandchild’s educational setting—can raise awareness of the experience of the grandparents of children with disabilities. It will also raise awareness of the needs of both generations and will assist in planning to accommodate these needs.