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Mothers and Grandmothers in Families of Children with an Intellectual and Developmental Disability in the Arab Society

Prof Liora Findler, Sundus Fatma Zbedat, MSW Natali Racabi, BSW Vera Skvirski, MSW, The Bar-ilan University, 2017

 The current study aims to examine the contribution of personal resources such as selfesteem, and interpersonal resources such as emotional and instrumental support, perception of the grandparenting role, and the emotions shame and guilt, to stress and well-being among mothers, and well-being and personal growth among grandmothers. As these are subjective variables, and as mothers and grandmothers are likely to have different perspectives on these issues while reciprocally affecting one another, we examined differences between mothers and grandmothers. Additionally, the reciprocal contribution of mother and grandmother variables on mental health was examined, as were the contribution of the grandmother’s variables on maternal mental health and vice versa. To identify the unique characteristics of mothers and grandmothers of children with intellectual disabilities, these groups were compared with mothers and grandmothers of typically developed children. The study sample was composed of 100 Arab mothers of children with disabilities (aged 3-14), 96 Arab mothers of typically developed children, 101 Arab grandmothers of children with disabilities, and 100 Arab grandmothers of typically developed children. Mothers and grandmothers of children with disabilities were identified through local social v services and Akim frameworks, while the comparison group participants were identified as residing in the same areas as mothers and grandmothers from the research group

 
Nine research instruments were used in this study: 1. Stress Related Growth Inventory (Tedeschi & Calhoun, 1996) – grandmothers only; 2. Mental Health Inventory (Veit & Ware, 1983); 3. Multidimensional Experience of Grandparenthood Set of Inventories – MEG (Findler, Taubman-Ben-Ari, Nuttman-Shwartz & Lazar, 2013); 4. Self Esteem – RSE (Rosenberg, 1965); 5. Support Functions Scale (Dunst, Trivette and Deal, 1988); 6. Perceived Stress Scale – PSS (Cohen, Kamarck & Mermelsteim, 1983); 7. State Shame and Guilt Scale (Tangney and Dearing Tangney & Dearing, 2002); 8. A demographic questionnaire that was composed for purposes of this study; 9. Semi-structured in depth interviews.
 
Following the completion of initial questionnaires, six mothers and seven grandmothers continued to describe their personal experiences as mothers / grandmothers of children with disabilities in semi-structured interviews. These interviews were recorded and transcribed, and quotes obtained during these interviews are presented in the discussion to illustrate and highlight some of the issues that were raised in the quantitative part of the study
 
The findings of the current study suggest that there are more similarities than differences between mothers and grandmothers of children with disabilities and those of typically developed children. The findings regarding the mothers indicate that there are no differences in the study variables between mothers of children with and without disabilities, with the exception of self-esteem and guilt. Both self-esteem and guilt were higher among mothers of children vi with disabilities than among mothers of typically developed children. It is possible that the reality of raising a child with a disability has exposed the internal strengths of these mothers, and has forced them to utilize all available internal and external resources and, in fact, re-shape themselves. It is also possible that the fact that these mothers have managed to cope with stigma and social and familial difficulties, and succeed in their roles and their loyalty to their children, has enabled them to realize their strengths and has reinforced their self-esteem. As for the differences in levels of guilt, this too may be related to the characteristics of the Arab society whereby the family reputation is very valuable and the mother faces high expectations. The birth of a child with a disability may cast a shade over the perception of the maternal role and lead to high levels of guilt when the messages received from the surroundings imply that the mother is not coping successfully with the demands of her role. Similar to mothers, the self-esteem of grandmothers of children with intellectual disabilities is higher than that of grandmothers of typically developed children. It is possible that the special role these grandmothers have in their children’s families, and the accompanying feelings of vitality and capability, alongside the appreciation and gratitude from their families, contribute to their higher self-esteem. Regarding perception of the grandparenting role, the findings suggest that there are differences between mothers in the behavioral (instrumental and emotional support) and affective (positive and negative emotions) dimensions. Mothers of children with disabilities felt that they received less support from the grandmothers than mothers of typically developed children did. Mothers of children with disabilities also reported lower levels of positive emotions and higher negative emotions from the grandmothers as compared vii with mothers of typically developed children. The affective dimension as reported by mothers are not consistent with those reported by grandmothers, where no differences were observed between groups. It appears that in families of children with disabilities, grandmothers perceive their emotions more positively than do their daughters or daughtersin-law. The findings among grandmothers suggest that both the research and comparison groups expressed similarly high positive emotions and low negative emotions. The findings among grandmothers also suggest that grandmothers of children with intellectual disabilities invest more in their role as grandparents than grandmothers of typically developed children. Naturally, the demands that are involved in raising children with disabilities require that grandmothers be more active and perform more tasks within the family
 
The hierarchical regression models examining the contribution of the study variables to stress and mental health among mothers suggest that self-esteem is positively associated with well-being and negatively associated with stress. It appears that despite the demanding circumstances, mothers who appreciate their abilities and are aware of their strengths, feel capable of managing their lives properly and are confident that they will be able to cope with and overcome crises and difficulties in the future. Guilt was found to be positively associated with stress and negatively associated with well- being. It is possible that given the unique circumstances, when mothers feel unable to provide their children with what they need, or when they harbor harsh emotions towards their children or sense hostility from the surroundings, they live with a shadow of guilt. Such ambivalence can cause stress and lower emotional well-being. Mothers may feel viii unable to cope with the great challenges that are part of raising children with disabilities and their siblings
 
Social support contributed to the well-being of mothers but not to their levels of stress. These mothers often face great stress and it is plausible that support and help from grandmothers may not alleviate such stress. Yet the feeling that you have someone in your corner, the care and devotion of mothers and mothers-in-law, contributes to a good feeling which in turn leads to well-being. Finally, the significant interaction indicated that among daughters, the higher they perceived their mothers as motivated in their role as grandmothers, the higher their well-being was Stress, self-esteem and guilt contributed to the well-being of all grandmothers. Lower levels of stress and guilt and higher self-esteem contributed to higher levels of well-being. As is likely to happen, especially with older women, stress that caused a sense of lack of control, sadness, irritation and frustration from the mounting problems upset the grandmothers, increased their distress and made it harder for them to experience wellbeing. Guilt is naturally accompanied by an intrapersonal conflict between internal commands and behavior (O’Brien et al., 2007) and thus may be detrimental to one’s adaptation processes. Additionally, higher self-esteem among grandmothers was associated with higher well-being, as recognition of the fact that they are valued and needed, contributed to their well-being. Finally, the interaction between stress and meaning of grandparenthood also contributed to well-being. Among grandmothers with low levels of meaning in grandparenthood, lower stress levels were associated with higher emotional well-being. ix Stress, self-esteem, a non-linear level of guilt, support, burden and positive emotions all contributed to personal growth among grandmothers. Lower levels of stress were associated with greater personal growth. Stress that was described by the grandmothers as accumulating difficulties, a sense of inefficiency, distress and irritability contributed to lower levels of meaningful activity, desire for change and for the development of new opportunities – all expressions of personal growth. As for self-esteem, the findings suggest that higher self-esteem is associated with greater growth. It is possible that with the passing of the years, and after providing their children and grandchildren with continued support, grandmothers require internal strength and resources that will enable them to move forward and continue developing a sense of personal growth. The non-linear association between guilt and growth suggests that this association is only evident when there are high levels of guilt, which probably motivate the grandmothers to re-examine and change things, eventually leading to personal growth
 
Additionally, low burden and positive emotions contributed to personal growth. It is plausible that when grandparenthood is perceived as less difficult and burdensome, and as a more positive experience, this role fills the grandmothers with a sense of vitality and a feeling that they are contributing to the family, which in turn contributes to personal growth. Two interactions contributed to personal growth: Concession and stress; cost and self-esteem. It appears that among grandmothers who feel they pay a higher price, lower levels of stress are associated with greater personal growth. Similarly, among grandmothers with low self-esteem, lower levels of stress are associated with greater personal growth. The dyadic analysis indicated that when mothers rated the symbolic dimension of grandparenthood as higher among their mothers or mothers-in-law, the mental health of x the grandmothers was lower; and when they rated the behavioral dimension higher, the mental health of grandmothers was higher. It is possible that the symbolic dimension – reflecting the sense of family continuity, seeing the children as representing the future – may be a cause of tension and frustration for the grandmothers. Moreover, thoughts of the family’s future are often accompanied by thoughts about old age and dying, and thus greater focus on this dimension may be detrimental to the well-being among grandmothers. The behavioral dimension represents the mothers’ perceptions of the assistance provided by their mothers and mothers-in-law in raising the child, including enrichment activities of joint learning and playing or providing warmth and love. When the mothers have a positive perception of the grandmothers’ activities this contributes to a good feeling which leads to well-being among grandmothers
 
Higher self-esteem among mothers and higher ratings of the affective dimension of grandparenthood contributed to personal growth among grandmothers. The symbolic dimension of grandparenthood, as rated by the mothers, was negatively associated with personal growth among grandmothers. The literature often mentions an association between high self-esteem among mothers and the ability to utilize and benefit from social support (Florian & Findler, 2001). Naturally, this ability also affects grandmothers; mothers are confident in their abilities and do not feel threatened, and hence can express gratitude to the grandmothers which in turn leads to personal growth among the grandmothers. The symbolic dimension of grandparenthood which attributes positive emotions to the way the grandmother feels when fulfilling her role also contributes to a good feeling of recognition and, hence, to a sense of vitality and personal growth. On the other hand, in line with the findings regarding well-being among grandmothers, the xi symbolic dimension of grandparenthood was negatively associated with personal growth. Personal growth, which represents the horizon, a sense of satisfaction and vitality, is at times opposed to thoughts about old age and the accompanying losses. The symbolic dimension carries reminders of this and thus may create tension and impede personal growth among grandmothers
 
The current findings suggests that there is a strong affinity between generations, and that mothers and grandmothers in the Arab society attribute great importance to the role of grandmothers and regard them as a unique potential resource in the family. Their experience, free time and motivation to provide emotional and instrumental support, alongside their sense of commitment to their family, position them at the head of their children’s support system. Despite their active role and contributions, little attention has been given by professionals to their experiences and needs, and to the way in which they are perceived by their daughters and daughters-in-law. In order to benefit from the potential of their support, it is necessary to develop intergenerational interventions that are culturally sensitive and relate to the unique characteristics of the Arab family. Such programs should include the provision of knowledge and information on disabilities, develop communication skills and channels within the family, develop skills that are relevant to children with disabilities, and provide emotional support for mothers and grandmothers
 

 

This work was supported by a grant from Shalem Fund for Development of Services for People with Intellectual Disabilities in the Local Councils in Israel