Grandparents can play critical roles in the lives of children with intellectual and developmental disabilities and their families. However, current research and understanding around grandparent roles and experiences is limited. The purpose of this qualitative study was to examine the roles and experiences of grandparents supporting children with disabilities. In this article, the voices of grandparents with diverse experiences are presented. Key themes that emerged were the role of the grandparent, boundaries in roles and space, navigating family dynamics, and the general experiences of grandparenting. These findings have implications for the types of supports provided to grandparents and for practitioners working with families who have actively involved grandparents.
The importance of grandparents in families of children with intellectual and developmental disabilities (IDD) has been discussed for more than two decades (e.g., Harris, Handleman & Palmer, 1985; Vadasy, Fewell, & Meyer, 1986). However, recent research in this area has begun to examine more closely the unique role and impact of grandparents on these families, such as families with children on the autism spectrum (e.g., Sullivan, Winograd, Verkuilen, & Fish, 2012). Fewer studies have examined the experiences of grandparents themselves and the impact of having a grandchild with autism or other disabilities on the grandparents' own lives (Gallagher, Kresak, & Rhodes, 2010; Margetts, Le Couteur, & Croom, 2006).
Grandparents have traditionally filled a variety of roles in the family unit and society. These include sharing their experiences meaningfully, reconnecting with the past, fulfilling or continuing a family legacy, and indulging in their grandchildren without the responsibilities of parenting (Hillman, 2007; Pruchno & Johnson, 1996). Grandparents may interact with their grandchildren in a variety of ways, including enjoying occasional visits to assuming full custodial care. They may also see their role as transmitting family history or traditions. These experiences may be influenced by cultural, societal, and/or family norms and expectations.
However, in families of children with disabilities, the meaning of grandparenthood and the roles grandparents take on may change drastically. Grandparents may serve as critical supports in these families (Hornby & Ashworth, 1994; Lee & Gardner, 2010). Supports can be classified as practical, financial, or emotional supports (Hornby & Ashworth, 1994; Lee & Gardner, 2010; Vadasy et al., 1986). Practical support refers to hands-on forms of help such as babysitting and household chores. Financial support can range from occasional financial assistance, such as purchasing gifts or groceries, to larger investments, such as assisting with therapy fees. Emotional support refers to the more intangible aspects, such as being available for the parents, understanding the problems parents face, accepting the child for who they are, and helping parents feel less isolated (Hillman, 2007; Hornby & Ashworth, 1994; Lee & Gardner, 2010). Unfortunately, grandparents may also be sources of stress for parents of children with disabilities. This may occur when grandparents have difficulty accepting the parent's perspective on their child's disability label, have conflicting views on intervention and behavior management, or hold unrealistic expectations for the child or family (Hillman, 2007; Seligman, 1991).
Listening to grandparents themselves may help expand the field's view on their roles in families of children with disabilities. Parents' experiences are well documented, but less is known about grandparents and their experiences and challenges. Unless parents share diagnostic, school, and other reports with them, grandparents usually do not have primary access to information about the diagnosis or services, particularly if they are noncustodial grandparents. Hence, their experiences and means of supporting the grandchild with disabilities may differ from the experiences of the parents more often examined in research studies. Yet, they can be critical supports for the child and family members. As such, it is important to understand the supports they have and the challenges they face in order to better support grandparents in their involvement with the nuclear family. The purpose of this study is to more fully explore the roles and experiences of grandparents of children with disabilities.
We drew upon Bailey and Wolery's (1984) ecological framework of early intervention to explore grandparents' roles and fully examine their experiences in the social context of the interacting systems within which the child with disability resides. In particular, we considered the roles grandparents play in influencing systems of the nuclear family (i.e., parents, siblings, and child with a disability). We use the term “extended family” to refer to the family unit consisting of the nuclear family and the grandparents together, along with the grandparents' other children when applicable (i.e., the aunts/uncles of the child with a disability).
Ecological systems framework
Drawing from the ecological systems theory developed by Bronfrenbrenner (1986), Bailey and Wolery (1984) developed a lens of examining early intervention through the ecological systems perspective, which provides a useful tool for examining how families of children with disabilities experience the early intervention system. Three principles form the foundation of the ecological systems perspective: (a) the relation between individual behavior and environment, (b) ecological sensitivity, and (c) organizational processes (Powers, 1988). First, the framework is built upon “an awareness of the interrelationships between individual behavior and the environment” (Bailey & Wolery, 1984, p. 65), which can explain the family's level of adjustment and adaptation to the child with disabilities. The ecological systems framework posits that each individual's behavior operates within and across a series of interrelated systems, moving from the innermost concentric circle, to the outermost circle: the microsystem, the mesosystem, the exosystem, and the macro system (Bailey & Wolery, 1984).
At the core of the concentric circles of systems is the microsystem level, consisting of interactions between the child and the immediate systems around him or her—the nuclear family, the extended family (including actively involved grandparents), and childcare centers or schools. The mesosystem consists of one- and two-way interactions between the family and professionals in various settings. Grandparents actively supporting the child's family may be part of those interactions through the roles they play and the supports they provide. The exosystem consists of the larger community in which the child and family live, such as neighborhood organizations; social and religious groups; and local, state, and federal agencies. The macrosystem refers to the larger governing structures that influence the child's experiences, such as federal and state legislations, agency regulations, societal attitudes, values, and ethics. Grandparents supporting children with disabilities are often part of the child's microsystems (as one of the key relationships with the child) and mesosystems (through interactions with parents and other direct service providers). The ecological systems approach, hence, presents an overview of the nature of structures and contexts that frame the grandparents' interactions and experiences with their grandchild, especially in the micro- and mesosystems.
Second, a change in one part of the organizational system can create changes in other parts of the system (Powers, 1988). Also called ecological sensitivity, this concept is critical to our understanding of how grandparents' roles and efforts to support the child and the nuclear family are influenced by and assert influence at the different levels of the ecological system, especially at the micro- and mesosystems level. For example, grandparents' support of the child and family may ease stress in marital relationships, which can then positively impact the parent-child relationship. Third, attention to organizational process, or the organizational factors that influence how intervention programs are designed and implemented, is essential for acknowledging and overcoming or minimizing barriers to the child and family's wellbeing (Powers, 1988). For example, if an intervention program actively considers the existing supports and resources (e.g., grandparent support) in a family as part of their planning process, a more integrated support across the adults in the child's life can be developed to support the child and family. In the current study, the ecological systems model provided insight into the grandparent's positioning in relation to the grandchild and the other people and systems in the grandchild's life (see Figure 1).
Study Purpose and Research Questions
The purpose of this study is to examine the experiences of grandparents of children with intellectual and developmental disabilities and the roles they play in the family. Two research question are addressed in this study: (a) What roles do grandparents of children with disabilities take on? (b) How do they perceive their roles in relation to the child with disability and the child's nuclear family?
The purpose of this study was to understand the roles and experiences of grandparents of children with disabilities through an interpretivist qualitative approach (Patton, 2002) using semistructured interviews supplemented by photo elicitation methods. Photo elicitation is the use of photographs during the interview process (Harper, 2002; Meo, 2010), where the purpose of using photos is to “trigger responses and memories and unveil participants' attitudes, views, and beliefs” (Meo, 2010, p. 150). This is particularly useful when participants describe their experiences and the meaning of being a grandparent. By asking grandparents to share photos representing their interactions with their grandchild and symbolizing what grandparenthood meant, the conversations around these photos during the interview provided additional insight into how grandparents perceived themselves in relation to their grandchild. A series of three semistructured individual interviews were conducted with nine grandparents (from eight families) who were actively involved in their grandchild's lives. Given the complex interactions evident in the ecological systems framework, having multiple interviews allowed time for the interviews to progress from examining microsystems-level topics such as their role and type of caregiving support, to mesosystems-level topics such as the relationships among family members, and exosystem- and macrosystems-level topics such as grandparents' support needs and thoughts around working with professionals and educators.
Participants were nine grandparents, two of whom belonged to the same family. To be included, grandparents had to: (a) have a grandchild with a disability aged 21 years or younger; (b) be providing some form of self-reported grandparenting support (practical or emotional) to their grandchild (e.g., feeding, babysitting, etc.); and (c) be willing to be interviewed in English. To select “information-rich cases for study in depth” (Patton, 2002, p. 230), a purposeful sampling method was used to recruit participants. To recruit the most diverse sample possible, flyers were distributed to a range of settings (e.g., hospitals, preschools, child development centers, organizations working with families of children with disabilities). Participants were given a $15 gift card after the first and second interviews, and a $20 gift card after the third interview.
Grandchildren ranged from 5 to 17 years old at the time of the study. Their diagnoses included one or more of the following: autism, Down syndrome, or other medical conditions. The majority of the grandparents were retired and provided active support (e.g., bringing the child on outings, helping with chores, living in the child's home for part of the week). Grandparents and grandchildren's demographic information are provided in Tables 1 and 2, respectively.
Identifying an illustrative sample
The themes in this article are based on the analysis of the data from all eight sets of grandparents (nine participants). We selected three sets as particularized case examples for use in this report to demonstrate the depth and breadth of the themes as they were evidenced in these three particular grandparents. The three sets of grandparents selected are (pseudonyms used): Lars and Mia and their granddaughter, Olivia; Maisie and her granddaughter, Chloe; and Sandy and her grandson, Liam. Each dyad is described in terms of age, disability, and lifestyle. Information about the other participants is available in Tables 1 and 2. These three were selected because they represented the continuum of experiences that grandparents reported within each of the key themes and, across the three, they reported salient examples of the themes presented in this article. Although each participating family's experience was unique, these three sets of participants reflected the range of experiences present in the full sample but reflect contrasting experiences and demographics, such as experience with different family roles, different ages, and different disability characteristics (two sets of grandparents cared for children whose needs were categorized as severe or intensive; the third grandparent self-identified her grandchild's disability as being of “moderate” intensity). By particularizing our examples to these three families, we attempted to more deeply and clearly explain our findings across all participants by providing thick, detailed descriptions of their lives and the stories they shared during interviews.
Lars, Mia, and Olivia
The first set of grandparents, Lars and Mia, were the only ones where both grandfather and grandmother participated in the study and were interviewed together. Their granddaughter Olivia, aged 17, has severe autism and uses cochlear implants for her profound hearing impairment. She transitioned to a group home a year and a half prior to beginning of data collection, and her grandparents meet with her at least once a week, taking her out every weekend. Lars and Mia had been heavily involved in her life, partly because Abby, her mother (their daughter) was a single mother raising two young children, who had to keep her income low in order to qualify for Medicaid assistance for several years. Olivia has a sister, Adaline, who is three years younger and did not have any disability diagnoses or labels.
Maisie and Chloe
Maisie, a retired nurse, is grandmother to 5-year-old Chloe who was diagnosed with Down syndrome prenatally. Chloe has two older siblings, a brother (14 years old) and sister (11 years old). Although Maisie feels her symptoms are moderate, she also indicates that Chloe is currently “thriving” and “happy to go to school.” Maisie meets with the family a couple days each week (e.g., transporting the grandchildren to school and various activities, helping with homework) and over the weekend (engaging them in “fun stuff”). Both of Chloe's parents work, occasionally traveling for work, and have a good relationship with Maisie.
Sandy and Liam
Sandy is grandmother to Liam, a 6-year-old boy with severe autism and Down syndrome who is nonverbal. He also has significant food intolerances and has a metabolism disorder. His 3-year-old brother, Lucas, does not have any disability diagnoses or labels. According to Sandy, Liam's mother is highly protective of Liam because he had failure to thrive as an infant. Currently Liam's diet is limited exclusively to organic lamb, cabbage, and pears, blended into a smoothie. Sandy cares for the children when Liam's mother needs to run errands, and joins the family when they take the children on outings because Liam has no safety awareness and requires someone to be with him at all times. During the study itself, Liam had just had his provisional diagnosis changed to a diagnosis of autism and was on the waiting list for an autism preschool. He was about to begin applied behavior analysis (ABA) therapy and his parents were in the midst of determining the services he would receive at the school with his educational team. Most of Liam's time during the research period was spent with his stay-at-home mother, with Sandy providing additional caregiving support.
Data were collected over the course of 2 months. The main data sources for this study consisted of a demographic questionnaire, three semistructured interviews, and photos from grandparents. The first author met with each grandparent individually (Lars and Mia met as a couple). The general sequence of data collection was as follows: (1) initial interview and demographic questionnaire, (2) grandparent sent two to three photos to first author, (3) second interview with follow up questions from initial interview and discussion about first set of photos, (4) grandparent sent additional photos to first author, and (5) final interview with follow-up questions and discussion about the second set of photos.
Grandparents were asked to complete a short demographic questionnaire at the initial interview, providing context about the family's background. The questionnaire contained three sections. The first part asked grandparents about themselves (e.g., age, ethnicity, health status, income range, etc.). The second section was about the child (e.g., age, gender, primary diagnosis, age of diagnosis, severity level, etc.). The third section asked about the family (e.g., number of family members living together, number of children, number of children with disabilities, number of other caregivers, etc.). The information provided through the questionnaire allowed insight into the grandparent's interaction at the microsystem and mesosystem levels.
A series of three semistructured interviews were conducted with each grandparent. Interviews were conducted either in the home or at cafes depending on grandparents' preferences. The initial interview consisted of general questions probing into their perception of their roles as grandparents, their relationship with the grandchild, experiences in caring for the grandchild, and how their culture influenced their experiences. Subsequent interviews included follow-up questions from the initial interview, questions not covered in the initial interview, and questions about the photos grandparents shared (described subsequently). Questions on the photos were intended to elicit grandparents' reflections on the stories within the photos and to provide insight into their experiences and share about significant moments in grandparenting or events symbolizing grandparenthood to them. The final interview included similar questions on the second round of photos and was an opportunity to complete all remaining questions and follow-up on topics from previous interviews that were of interest. A total of 24 (three with each of the eight grandparents) interviews were conducted. Interviews lasted 1 hour 7 minutes on average, ranging from 38 minutes to 1 hour 55 minutes. All interviews were recorded using a digital audio recorder and transcribed verbatim.
Grandparents were asked to take or share existing photos along the following themes: (a) photos of their typical interactions with their grandchild; (b) photos of objects, events, or activities symbolizing what grandparenthood meant to them; and (c) photos of something significant or dear to them around the theme of being a grandparent or what being a grandparent meant to them. The first theme was based on the first research question about grandparents' roles. Photos of grandparents' typical interactions with their grandchild would likely elicit richer and more detailed description of how they supported the child and family. These photos included interactions that occurred between interviews as well as photos from the past. Although grandparents had been asked to share photos of their interactions between the interviews, some grandparents asked to share photos from the past because they often engaged in the same kinds of activities each time they met with the grandchild. Also, photos from the past allowed for them to illustrate the changes in their interactions over time and showcase their grandchild's development. Photos of grandparents' typical interaction with their grandchildren were used as secondary data to support the analysis of the interview transcripts and were intended to elicit richer descriptions of the grandparents' involvement and interactions with their grandchild. During the interview, grandparents would occasionally refer to the photographs as examples of their interactions with their grandchild. The second theme stemmed from the overarching purpose of the study, which was to understand the grandparents' experiences and meaning of grandparenthood. This could be portrayed through a visual representation. Hence, grandparents were asked to share any photo that symbolized grandparenthood, even if it did not include images of themselves or their grandchildren. The last theme was suggested by grandparents who had found it difficult to think of a symbol for grandparenthood and asked to share photos that were precious to them instead (e.g., a photo with five generations). Photos from the second and third themes were discussed specifically with regards to the general experiences and meaning of grandparenthood.
Although they were asked for an overall of four to six photos between interviews, grandparents often sent more photos than requested between interviews—in one case, the grandparent sent 17 photos between interviews. All grandparents indicated that they had a photo-taking device and knew how to send photos through email. A total of 136 photos were sent, with each grandparent sending 12 to 25 photos (averaging 17 photos per grandparent). Details about the photos are presented in Table 3.
Identifiers were replaced with pseudonyms before the analysis of the transcripts, which was conducted in NVivo 10 (QSR International, 2012), a qualitative data analysis software. The first author engaged in both inductive and deductive coding procedures. This included entering into analysis with key concepts and ideas related to the study purpose and theoretical framework (e.g., role of grandparents, challenges, etc.) and also being open to new codes that were identified in the data but were not specifically a part of the original theoretical framing (e.g., family dynamics).
The first author followed several steps to code the data. First, she reviewed transcripts for accuracy before open coding each transcript line by line or sentence by sentence (Corbin & Strauss, 2007). Some examples of initial open codes were: (a) participating or supporting in therapy/treatment; (b) relationships with parent; (c) frustration, heartbreak, and grief; (d) family-related culture/background. As the first author engaged in open coding, she wrote memos about ways the open codes could be categorized (Marshall & Rossman, 2011). Next, the first author engaged in focused coding (Saldaña, 2013) through thematic grouping of the open codes to identify the major categories in the data that aligned with the study purpose and theoretical framework. Examples of major categories include: (a) nature and type of grandparent involvement, (b) grandparent challenges or struggles, (c) cultural influences on grandparent involvement, (d) grandparent strengths and resilience, (e) general experience of grandparenthood, (f) family relationships and dynamics, and (g) supports grandparents desired.
To ensure that the codes were clear and defensible even to a naïve reader, the first author gave the list of major categories and initial open codes to a second coder who coded four of the 24 transcripts using the codes identified. Each category and open code had a brief definition and explanation. The second coder had no prior relationship with the participants. After the second coder completed the coding of the data, the first author and the second coder compared their coding to determine if the codes applied. They then met to discuss differences between their two sets of coded data, which resulted in re-coding some of the data and refinement of previous code names. This also provided an opportunity for the first author to be pushed in her thinking around her interpretation of the data. The second coder had no involvement with any of the other research activities. This provided the first author with the opportunity to engage in researcher reflexivity (Brantlinger, Jimenez, Klingner, Pugach, & Richardson, 2005) with an individual who did not have a relationship with participants. Because the first author had also been the interviewer, she was privy to the participants' nonverbal cues during the interview and had also developed a relationship with the participants over time, which allowed for informal conversations outside of the formal interviews. Having a second coder helped ensure that the code applications were consistent with the interview data available and were defensible even without the relationship with the participants.
Finally, the first author reread the main coding categories to engage in thematic organization based on the study purpose and theoretical framework. During this final cycle of coding, the author identified the final four themes in the data: (a) the grandparent's roles, (b) boundaries in roles and space, (c) family dynamics, and (d) general grandparenting experiences. Throughout the analysis process, the first author met frequently with a group of peers engaging in qualitative research and faculty mentors on the project to discuss the emerging findings. These meetings provided the first author opportunities to discuss her interpretations of the data and be challenged in supporting her interpretations with evidence.
Trustworthiness and Credibility
Trustworthiness and credibility was established through the following credibility measures suggested by Brantlinger et al. (2005): first-level member checking, collaboration, and researcher reflexivity. First-level member checking of the transcripts was conducted to ensure the accuracy of the data before the transcripts were used for analysis. Transcripts of the audio recordings were sent to participants so they could check them for accuracy. Of the 24 transcripts sent out, six were not verified by the grandparent; all three grandparent sets particularized in this article verified all three of their interview transcripts. One grandparent in particular (not in the three sets presented in this article) had noted during the last interview that she would be comfortable not having to check the transcripts, although the transcript was still sent to her for verification. Grandparents also indicated if there was information that they preferred to omit from the analysis (i.e., if they felt the information was too sensitive). Most edits were made primarily for misspelled names.
During the analysis process, the first author engaged in collaborative work and involved external auditors (Brantlinger et al., 2005). She frequently met with her faculty mentors and peers engaged in qualitative work who were not part of the study who provided opportunities to discuss interpretations of the data. She also recruited a second coder to provide an opportunity to explore and disclose researcher bias in the coding process, given the first author's familiarity with the participants and her personal experiences, background, and beliefs (see Researcher Positionality below). The second coder was a second year master's student in an early childhood special education program and had experience with children with disabilities and their families. As the primary coder, the first author had prior experience in qualitative research and conducting interviews and focus groups with parents of children with disabilities. She had also used NVivo in previous research projects to code qualitative data and compare coding across coders. The first author provided training on the use of NVivo and the coding process to the second coder.
Researcher's Positionality and Reflexivity Statement
The primary researcher who conducted the interviews and analyzed the data from the transcripts is an international doctoral student from Singapore with a background in early childhood special education. Singapore is a small but densely populated country with diverse ethnic, racial, and religious groups. Kinship care is commonplace, especially when a family member is ill or has a disability. Grandparents often help care for children when both parents are at work. Kinship care in the United States may be less accessible because families may live in different states. Nonetheless, some families and cultures may still rely on kinship care. For instance, the U.S. Census Bureau reports that in 2011, 24% of preschoolers were being cared for by a grandparent (Laughlin, 2013). In fact, grandparents were among the top three choices for child care types regardless of whether the mother was employed or not (Laughlin, 2013). The first author also had personal experience as a child of being cared for by a grandmother who lived with her family. Because Singapore is a small country, grandparents in Singapore tend to live geographically nearer to the nuclear family and kinship care is more accessible. The first author's (and primary coder's) personal culture, where grandparents are usually involved to some degree in the family, influenced her initial perceptions of the grandparents' roles in the family. The collaborative work during the analysis process allowed her to gain a better understanding of the nature of and cultural norms around kinship care in the United States, especially in her conversations with peers and faculty who were from the United States. For example, it is not as common for grandparents to live near the nuclear family in the United States. This meant that the expectations of grandparent roles could be different from what the first author had been personally familiar with.
The first author's Chinese ethnicity, with English as her first language and Mandarin as her mother tongue, may have had an impact on how participants perceived the meaning of “culture” when being interviewed. Most notably, there was a potential influence of her positionality as an Asian, which is considered a minority in the United States, on how participants talked about “culture.” Because the participants were mostly of Caucasian background, participants may have tapped into what they understood generally about cultures in their answers to interview questions related to culture. For example, at least two grandparents explicitly referred to their understanding that Asian families tend to be more collectivistic and Caucasian culture tended to be more individualistic, with grandparents being there to enjoy the grandchildren, but not always extremely involved in the nuclear family's lives.
The purpose of this study was to gain a better understanding of the experiences and roles of grandparents of children with disabilities actively involved in caring for and supporting the grandchild. In this section, we present four key themes that emerged from the study: (a) the role of the grandparent, (b) boundaries in roles and space, (c) family dynamics, and (d) general experiences of grandparenting. The key themes are illustrated with examples from the three selected sets of participants and linked to the different levels of the ecological systems framework.
Grandparents generally perceived their primary role to be of supporting the nuclear family unit and carrying on family traditions. Although the families received formal, mesosystemic support through school and additional therapy services, grandparents provided additional, supplemental informal support. In particular, the informal support grandparents provided were focused at the microsystems level through their direct interactions with the child, and at the mesosystems level in their financial and emotional support for the parents.
Supporting the nuclear family unit
Grandparents saw their primary role as supporting the nuclear family unit by supporting both the child (and siblings) and the parent(s). Their support for the nuclear family came in the form of practical and financial support, as well as concern for the parents (their children). Grandparents also noted that the nature of their involvement evolved over time, as the child grew older and the family needs changed.
Offering practical support
Grandparents offered practical support such as helping with transport, picking up groceries, preparing meals, bringing the child on outings, or babysitting when the parents needed to run errands or needed an additional pair of hands. For example, Lars and Mia shared how they helped care for Olivia when she was younger. They noted the additional energy and caution required of them due to Olivia's support needs. Family care routines, such as toilet training, lasted longer than expected and vigilance was required to keep Olivia from running out of the house. Sandy noted similar concerns with Liam, her grandson. She explained,
She'll [Liam's mother] be trying to cut, a knife, cut his meat up before she puts it in the blender, and he'll come and grab her by the arm because he wants something. Or she'll be trying to put his meds in his bottle and he'll grab her by the arm, and the meds will go flying all over the room. It's really frustrating when you can't even do simple things like prepare his food without him being up in your face. It's very difficult … she needs two adults there sometimes.
Sandy's description of the need for two adults to accomplish basic tasks is indicative of the type of support many grandparents provided to their families, with direct care for the grandchild at the microsystemic level, and support for the parents at the mesosystemic level.
Lars and Mia were an example of grandparents who provided more intensive support, to the point where, “It's a co-parenting situation with my daughter.” As Mia mentioned, “I raised her younger sister because my daughter had Olivia in therapies 10 hours a day if possible. We also participated in many of the therapies. We were like the other parents for many years.” Although they had not anticipated being as hands-on as they were, “as life turned out, we ended up partially raising grandchildren.”
Offering financial support
Grandparents sometimes also offered financial support when they could. Sandy would occasionally offer to purchase foods for Liam's special diet, noting that it could be a strain for Liam's parents to provide the quantity and quality of food Liam required. In the early years, Lars saw his role as being a financial provider because he was financially supporting both his wife and himself, as well as his daughter and her two children because his daughter had to keep her income low in order to qualify for services for her daughter, Olivia. As Mia explained,
We were basically trying to help Olivia and keep Abby afloat. ... I don't think she could have survived without our financial help because the limits were so low that a family couldn't exist in order to get health insurance for her children.
Financial support from grandparents ranged from the occasional help with groceries or gifts to the more intensive support of being a financial provider, representing support at the mesosystems level. In other words, the extent to which grandparents offered financial support depended on the family's needs and the degree to which grandparents themselves were able to.
Support and concern for the parents
In their concern for the parents' well-being, grandparents saw their role also as supporting the parents by offering to care for the child so that parents could have time for themselves (e.g., date nights, rest), or time with their other children. As Lars recalled, because Olivia had meltdowns that included screaming for hours, “At times we would physically sleep at Abby's house so that Abby could get a few nights of rest.” Mia expressed her concern for her daughter:
Our worry is, will Abby last, that she won't be able to have pleasure in life. She didn't have time for dating, she wasn't sleeping, that she would just go under totally … I've watched some of her sense of humor fade, I've watched her lose some of her vitality. And that was hurting me too.
Mia's concern and subsequent support for her daughter was echoed across all grandparents with regards to their support for the grandchildren stemming partly from their concern for their adult children. The principle of ecological sensitivity can be applied here, where grandparents recognize the impact of caring for the child with disability on the parents and intervene through offering their support for the parent. This also suggests that grandparents saw themselves in a position to strengthen the microsystems between parent and child, as well as the mesosystems level, the parents' relationship with each other, and the relationship between parent and siblings.
Evolving nature of involvement
The nature of grandparents' involvement changed over time depending on the changing needs of the child and family. Prior to Olivia's placement in her residential group home, Mia and Lars would see Olivia several times a week or even sleep over. Now, their involvement focuses on weekend visits and outings with Olivia. They said of the new arrangement, “This is the closest we've come, I think, to being what regular grandparents do.” The evolution in the type of involvement was similar for other grandparents as well. As Maisie articulated, “it's kind of evolved as she's [Chloe] gotten older and her needs have changed and her parents' availability for different things change over time.” Ultimately, grandparents saw their role as supporting the family where support was needed, as echoed in Maisie's statement, “it's kind of, you know, fill in where the holes are.” In general, grandparents in the study were involved in their grandchildren's lives to a greater extent than they had anticipated, in part due to the child and family's needs.
Another role of grandparents was that of passing on, or even creating, traditions and providing regular experiences that were similar to what they provided for their typically developing grandchildren, such as having sleepovers, or celebrating special occasions like birthdays and special holidays. In many cases, grandparents recalled activities they did with their own grandparents that they now did with their grandchild. If they had not been close to their grandparents, they created traditions of their own, such as working on special “projects” with their grandchild. In Sandy's case, it was important to her as a grandmother that she was “present for milestones in a child's life, the birthdays, the graduations, the Christmases, you know, being part of those celebrations. I think that's very, very important that grandparents be there for that.” Similarly, in their discussion of the photos they shared, Mia and Lars also highlighted the importance of being able to celebrate milestones or special events with Olivia.
For Maisie, this duty of continuing traditions was well defined based on her own expectations of what she saw the grandmother role to be. She articulated her role clearly:
The nickname I took for “grandmother” … is “Nonna,” which is Italian. And in Italy, the grandparents, especially the grandmothers, are the people responsible for carrying out the family traditions, preserving those traditions and demonstrating them and teaching them to the younger generation … I deliberately picked that nickname … with the same expectation that if there were family tradition and things that needed reinforced or taught, that I would be the one to do that.
For example, Maisie has rituals she does with her grandchildren, which she described through photos showing her and Chloe making gingerbread houses for Christmas and going to the puppet theatre. Because the older grandchildren have gone through the puppet theatre ritual growing up, they now wanted Chloe to experience this ritual as well. Maisie mused, “what's fun about this is that the older kids are reinforcing the ritual too. They bought in and they're helping to pass it on.” These examples demonstrate how grandparents viewed themselves in the role of continuing traditions and facilitating that continuity in the next generation through their direct interactions with the child, as well as with their other grandchildren, suggesting interactions at both the microsystem and mesosystem levels.
It was not always easy to maintain these traditions due to the grandchild's different needs. Nonetheless, grandparents still found a way to continue traditions, if not only for the grandchild with disabilities, then for the other grandchildren and family members. Sometimes these traditions were altered to accommodate their grandchild's needs, but they were passed on or created regardless. For example, due to her sensory needs, Olivia would not have enjoyed celebrating Mother's Day with the whole family, which included dining with extended family at a busy restaurant. Although Mia noted “it took a lot of willpower to say, okay we can't do all things together,” the couple still made a point to celebrate with her on a different day so she would still have a special occasion. One of Maisie's traditions was to bring Chloe's older sister to Home Depot for their free monthly children activities such as mini building projects that could be brought home. Due to her sensitivity to the loud noises involved, Chloe had always resisted participating. Nonetheless, Maisie would still bring Chloe to Home Depot and walk around the store with her while waiting for her sister to finish, or even let Chloe observe from a distance if she showed interest in watching. More recently, Maisie proudly showed a photo of Chloe beaming over a completed flowerpot, explaining that Chloe had not wanted to stay at Home Depot due to the noise. Instead, Maisie took the materials home so Chloe and her sister could finish the flowerpots at home. Hence, this is an example of how, when conditions at the mesosystem (e.g., celebrations and holidays) or even the exosystem (e.g., activities in the community) level were such that existing circumstances did not allow for traditions to be carried out in the usual way, grandparents would try to find a way to adapt them so their grandchild could still be a part of the family's traditions.
Boundaries in Roles and Space
Although grandparents viewed themselves to be in a position to support the family in various ways, particularly at the micro- and mesosystems level, they clearly distinguished between the parent and grandparent role and wanted to maintain some physical and emotional space.
All the grandparents in the study articulated some form of distinction between the parent and grandparent roles. A common emphasis was that the grandchild was primarily the parent's responsibility, and that their role as a grandparent was to support the family unit. For example, now that Olivia was in a group home and required less intensive support from them, Lars and Mia were learning to hold back. Although they have a good relationship with their daughter, Abby, they expressed a desire to let her have some independence. Lars described the tension as such: “At some level, I think Abby almost resents the fact that she needs so much help. And sometimes it gets a little bit to a conflict situation because of that.” Mia added, “She's trying to get some independence. And we are too. We're trying to think, okay now, we don't have to be so ‘together' all the time.” Hence for Lars and Mia, this role distinction came in the form of Abby's independence from being so reliant on them.
Maisie was clear that the parents' role was to be “her [Chloe's] primary and most important caregivers. And all the decisions about what's good for her comes from them.” She saw her role as “follow[ing] their lead … I'm there to back them up; I'm not there to challenge them” and fully supporting them. “I am a 150% with them.” In fact, Chloe's family was also cognizant of the need to protect Chloe's siblings' roles as children and siblings, and not as primary caregivers. Maisie explained:
We don't want to have her brother and sister have to do too much. They're perfectly capable of doing a lot and they like to. But you know they're kids. They shouldn't have their first job be taking care of their sister.
Similarly, despite having different opinions on what caregiving should look like, Sandy defined the role distinction as such:
I really value my relationship with my daughter … even though I may not agree with the choices she's made for her child, I don't want to become an adversary. … I want to be part of the team … she's the parent; I'm the grandparent. I'm not trying to be the parent.
These quotes illustrate how grandparents saw clearly defined boundaries between the role of the parent and grandparent and were aware of not wanting to overstep parenting boundaries. They were willing to offer advice, if and when asked, but would follow the parents' lead in decisions on supporting their grandchild.
Maintaining physical and emotional space
Defining physical and emotional space for themselves was a theme explicitly discussed by only three out of the eight grandparent dyads in the study (two of whom are included in this article). However, the theme is included because it contains an important aspect of boundaries grandparents navigated. None of the grandparents lived with the family, although one grandparent lived in the family's home for a few days a week and most of the grandparents had, at some point in time, moved to be nearer to the family. In fact, a few of the grandparents had made a conscious decision to create some physical space in which their lives were distinct from their grandchild's family.
For example, Mia and Lars both felt that maintaining some space was critical to preserve their health, in part because Mia had significant health issues. Mia explained, “Sometimes we just have to take a break … every once in a while, we're getting older, so we need to pull back a little bit. But there's always a little sense of guilt when we do that.” In fact, Lars and Mia had taken a year off to visit Lars' family in Europe and to take a break while working on their own relationship with each other, which had taken a backseat in their efforts to care for their granddaughter.
Mia: Yea, actually we're trying to piece our lives together at the end here. [Lars laughs] We're trying to get a little independence [laughs].
Lars: Yea … it was a conscious decision on our part that things were calming down with Olivia, and we thought we needed some time to sort of work on our own relationship a little bit. So we decided, okay, as difficult as it is to leave them alone, we decided it was necessary for us to sort of be on our own.
With Lars and Mia, the need to maintain some space pointed to the impact of the stress of the intensive support they had provided on their own marital relationship. For Maisie, the physical and emotional space was maintained in terms of responsibilities. As she explains,
… the only thing I maybe struggle with is, do I get taken for granted [laughs]. That my family assumes that I'm always there for backup and that they can ask me to do anything and I'll say yes. And I don't always feel like I want to say yes to everything.
Although she loved spending time with her granddaughter, she also needed time and space for personal things unrelated to the family, and she was not always able to be physically available to provide the support they wanted.
Maintaining emotional and physical space also included finding spaces apart from the focal family to process their thoughts and emotions. Examples include finding a therapist for themselves and talking with other friends or distant relatives who either shared experiences or had expertise about the disability and could understand the experiences of the grandparent. The need to define and maintain boundaries in roles and space suggests that, although grandparents wanted to support the families to their best abilities, they also recognized a need to maintain separate roles and lives as a form of self-care in order to continue supporting the family unit in the long term. This need to maintain boundaries suggests a mesosystem issue: grandparents recognized a need to keep relationships healthy by keeping the interconnected multigenerational family systems separate so they could better support the child and family.
The principle of ecological sensitivity suggests that an imbalance or tension in one part of the system affects the other parts. This imbalance can come in the form of the attention given to one family over others, or tensions arising from differences in opinions, which may impact family dynamics and relationships with members of the extended family.
A “mending of fences.”
Lars and Mia acknowledged that the amount of time and energy devoted to supporting Abby and Olivia's family over the past 15 years had affected their relationship with their other daughter, Hannah, and her family. Although Hannah understood why her parents had to devote so much of their attention to Abby and Olivia, Mia noted that “it's been hard on her [Hannah's] family in ways too.” Now that Olivia required less intensive support, Mia and Lars described themselves as “doing a lot of slow mending of fences” in working to build up and improve their relationship with Hannah and her family.
Navigating differences in opinion
A key area in which Sandy had to navigate interpersonal relationships was where her opinions differed from her daughter's. For example, she was frustrated that 6-year-old Liam was still drinking his smoothie concoction from a sippy cup instead of a regular cup. However, she understood her daughter's fear that Liam would refuse foods again given his food sensitivities and his prior experience with failure to thrive. Sandy explained that she reconciled their differences by “push(ing) the envelope a little bit. And so how we work through those is, … I'll say … I think I'll understand better why you've made the decisions you've made for him, if you'll explain … educate me.” Thus, grandparents often found themselves in a position of having to navigate and reconcile tensions arising from differences in opinion. Like Sandy, they learned to work through differences by asking questions to better understand the parents' position and rationale so they could better support the family.
General Experience of Grandparenthood
The experience of grandparenthood had been unexpected in many ways, especially for grandparents of children with more significant needs. Some grandparents experienced a difference between their initial visions of grandparenthood and their lived experiences. As Mia noted, “It was completely different than we expected. Although we've enjoyed it, but we've had to do a lot of work and make a lot of sacrifices to help this family, which we don't regret.”
There were challenges in this journey of grandparenting, such as their concerns for the child and family's future, managing practical issues of daily care and communication, and emotional coping. Because it was mainly Olivia's immediate family who provided love and support, Lars' concern was for her future, when “the immediate family is going to get less and less.” Mia articulated their heartache in watching their nonverbal granddaughter manage her difficulties with communication when she was younger:
She realized people were connecting in some way she couldn't, she'd run up to children … And she'd hug them. Of course, it was awkward by the time they were five or six. And then she'd feel so sad because that was all she could do. And she didn't know where to go on from there. It was very hard to watch. And she's learned now to stand back and know that she's kind of an outsider. So it's been really, really, really hard.
In fact, Lars and Mia used the metaphor of a tsunami to describe their grandparenting journey, bringing in a photo of a tsunami in the second interview:
When you're in the middle of the tsunami, you're of course fighting for survival. And they show this picture of how peaceful these beaches were when it was over, a year later. … I remember myself feeling that as we got Olivia placed … and I could take a deep breath. And I still feel sometimes we are just standing on this very beach trying to realize what happened. And figuring how do we build a life from here?
The image of the tsunami they shared was representative of how they felt the grandparenting experience had been. The more challenging period of supporting the family had felt like being in the middle of a tsunami, where they were intensively involved in Olivia's life (e.g., fighting for services, going to therapy sessions, learning to sign, caring for Olivia's sister). Now that the tsunami had calmed down with Olivia's group home placement, they had more time to reflect on what had happened and what to do next, such as working on their own marriage and restoring relationships with their other daughter. Lars and Mia's experience demonstrated the extent of their involvement within the different ecological systems levels in Olivia's life. The change from being in the midst of the tsunami to the current state of reflection and moving on suggests that, for them, some of the challenging experiences as grandparents were now settling in to some form of balance.
Maisie's experience was somewhat different, in part because her granddaughter was younger and required less pervasive support. In a lighthearted quip about being a grandparent, she said, “Ooh, it's really cool! You get to have fun with the kids and give them back. [laughs] But actually it's a little more than that.” For her, grandparenthood was like viewing a flower unfolding, as depicted in the photo she brought to her third interview in Figure 2. As she pointed to flowers in three different stages of development (budding, half bloom, and full bloom) in one of her photos, she explained:
I have no idea … how her ultimate outcome is going to be. I don't know how far she can go or how fast. All I am doing is watching this beautiful flower that just keeps opening and opening … She doesn't hit the milestone at the same point on the timeline as her siblings. But she hits them. … And she goes on from there towards the next one.
Similar to the flowers, Maisie saw Chloe's development as a positive and joyful process of growing that had its own unique timeline but was in a continual state of growth nonetheless.
Although Sandy did not have a metaphor, she talked about a five-generation picture of their family, with her daughter Rose as a baby, “and myself, my father, his mother, and his mother's father” that was significant to her, because grandparents have “a way bigger investment in the future than people who are not grandparents.” As she explained, having grandchildren meant that “you think more about the future or have higher hopes for it to be a wonderful place because you've got a direction, [a] descendant … it's not just ‘future generations.' It's little Liam. It's little Lucas … it's not so vague anymore.” For her, the significance of grandparenthood was seeing more specifically the role she played within a larger picture of her grandchildren's future, whether it was at the microsystemic level, directly supporting and caring for Liam, or at the mesosystemic level, supporting Liam's parents and brother, with the understanding that her actions at the different levels contributed to a larger picture of the systems within which her grandsons lived.
The key purpose of this study was to examine the roles and experiences of grandparents of children with disabilities. Despite the variation in family structures, child's age, and severity of the disability symptoms, all nine grandparents who participated in this study shared some common experiences. This article presented the key themes identified across the nine participating grandparents and particularized through three sets of grandparents.
With regards to the first research question, grandparents saw their primary roles as supporting the family unit (both the child and parents) at the micro- and mesosystem levels in various ways. Although their primary motivation for being involved in the grandchild's life remained constant over time, the activities they engaged in evolved with the child's stage of life, changes in the family's circumstances, and the needs that followed. They saw themselves as the ones to continue, adapt, or create traditions with their grandchildren.
The second research question on how grandparents perceived themselves in relation to the child and family was addressed in (a) the boundaries and family dynamics grandparents negotiated, and (b) the extended season of “parenting the parent.” First, relative to the child and the child's family, grandparents found themselves having to navigate role and space boundaries and tensions in family dynamics. Although existing literature on grandparents describes grandparents' experiences in terms of their roles and the supports they provide (e.g., Hillman, 2007; Lee & Gardner, 2010), this study extends the literature with the discussion of role boundaries and relational dynamics between themselves and the parent. Grandparents understood that parents still maintained “parent-ship” and were the primary caregivers with authority over the grandchild. They saw their role as providing support to the parents and grandchild, primarily at the micro- and mesosystems levels, so the family system could function better. Although not always explicitly stated, grandparents were careful to respect role boundaries and maintain their position as the grandparent. It is possible that this view of role boundaries may be culturally bound, as the grandparents in this study were fairly homogeneous in ethnicity and may share similar views of role boundaries. Families from cultures emphasizing unity and communal support may have expectations of high grandparent involvement and support (e.g., Gardner, Scherman, Efthimiadis, & Schultz, 2004), whereas cultures placing more value on independence in the nuclear family unit may highlight role boundaries more. Interestingly, when asked specific questions about culture, many grandparents had difficulty articulating how they felt culture influenced their experiences and expectations. It is possible that they did not view their “culture” as an influence on how they interacted with their grandchildren, nor on their expectations of the role they played as grandparents.
Second, there was also a sense of an extended season of “parenting the parent” in some cases when grandparents felt that the parent (their adult child) required support beyond what they provided to other grown children. This echoes findings in other studies of grandparents of children with disabilities (Hastings, 1997; Vadasy et al., 1986), where grandparents saw a need to support parents in having time for themselves, their marriage, and other family members. The findings suggest that grandparents find themselves in the position to directly support the child-parent relationship, and also indirectly support the relationship between their adult child and their partner if they are actively involved in the grandchild's life. Hence grandparents in this study intervened or supported the family mostly at the microsystem level, and occasionally at the mesosystems level. In the case of Mia and Lars, they had intervened at the exosystem to obtain health insurance coverage for their daughter and granddaughter's needs.
Limitations of the Study
A limitation of this study is that grandparents in this study were self-selected and represent a group of grandparents likely to be highly motivated to support their grandchild and the family. The grandparents in this study also lived near their grandchildren, which is not the case for many grandparents. Furthermore, all participants were White, non-Hispanic middle class families. They were recruited through contact with a parent of a child with disability who was also a professional who activated her network of contacts. Although we reached out to numerous local schools and agencies to recruit participants from diverse racial and ethnic backgrounds, we were not successful in attaining a diverse participant pool. Given the wide variability in childrearing beliefs and practices across cultures, parents from nondominant cultures have indicated differences in their parenting experiences and, hence, the need for more culturally responsive interactions between practitioners and families (e.g., Jegatheesan, Fowler, & Miller, 2010; Wang & Casillas, 2012). Grandparents from nondominant cultures and varied grandparent-child relationship structures will likely have different experiences from those in this study. Nonetheless, the insights from this study are important and relevant for practitioners and policy makers in considering how to best support families of children with disabilities. Grandparents can be a key resource for family support, particularly when there is high need in the family.
There are many possible reasons for the lack of diversity in the participant sample. First, grandparents from diverse racial, ethnic, and linguistic groups may have different levels of comfort telling a researcher about their personal stories. They may also have different levels of access to the services and organizations through which recruitment occurred. It is unknown how grandparents from underrepresented groups perceive university researchers and/or educational agencies. There may be skepticism or distrust of researchers or educational institutions. Cultural understandings of disability may influence families' comfort with participating in the study. Future research should take into consideration these factors in recruiting and also in considering relevant questions that will better elicit the range of supports these particular grandparents may need and the varied strengths these grandparents bring to their families and communities.
A methodological limitation of this study is that there were no sources of information and data apart from grandparents. Although different types of data were collected (demographic questionnaire, interviews, and photos), they came from the same source—the participating grandparents. Future research on grandparents' roles and experiences may be strengthened by adding perspectives of the other family members, including that of the parents and the child, where possible. These additional perspectives could increase understanding of how grandparent involvement may be reciprocally shaped by the parents and children's needs and expectations, as well those of the grandparents' themselves. Additionally, second-level member checks giving participants an opportunity to review the identified themes were not conducted due to time restrictions, but such checks would have increased the trustworthiness of the findings presented here.
Implications for Future Practice, Research, and Policy
The findings of this study have several implications for practice, research, and policy. The findings suggest a need to increase awareness of the lack of systemic supports for families with involved grandparents. One implication for practice includes the importance of considering grandparents' availability and ability to support the grandchild and family and offering information to increase their knowledge of ways to support the grandchild. Another key implication is the perspective change from viewing grandparents as merely additional informal supports to viewing them instead as important sources of strength that can be tapped in intervention, as grandparents can be highly invested in their grandchildren and motivated by love for the grandchild and their children (the parents). Practitioners should be mindful of how families perceive their roles by inviting them to define themselves and becoming cognizant of details, such as who is involved in decisions, meetings, childcare, and beyond.
Future research should examine the experiences of grandparents from culturally and linguistically diverse backgrounds. Cultural values, beliefs, and practices may influence how grandparents perceive disability as well as child-rearing practices. Understanding the experiences and roles of grandparents from underrepresented ethnic and racial groups will offer greater insight into their experiences. Future research should also recruit grandparents of children with a wide range of disabilities, as children with different disabilities may present with different types of support needs, influencing how grandparents offer support. The experiences of grandparents living a distance from the child and family should also be considered. Although these grandparents may not provide regular hands-on support, it is important to understand the roles they can play and how they support their family even when geographically distant.
Finally, the findings suggest some implications for policy. Children requiring extensive support can create multigenerational financial stress, particularly around health care needs. Interventions targeted at community level supports at the exosystem and policies at the macrosystem level can better support multigenerational families who have children with disabilities. For instance, the family's well-being can be supported by services, such as the provision of respite care, financial assistance for diapers for older children, and similar supports for daily living. Policy makers should also consider the employment and financial boundaries imposed on families who receive federal assistance; these issues may affect an entire extended family.
We examined the roles and experiences of nine grandparents from eight families who provided support to children with intellectual and developmental disabilities. Four key themes emerged around the role of the grandparent, the boundaries they set in terms of roles and space, family dynamics, and the diverse general experiences of grandparenting. Although grandparents' roles and experiences have been discussed in the literature, this study provides more in-depth exploration of the nuances around the grandparent roles and experiences through the examination of the boundaries they set and how they navigate family dynamics within the nuclear family and with the extended family. When grandparents are involved in a child's nuclear family, it is important to consider not only how they can influence and support the family and child, but also the support needs of the grandparents themselves if they are to more effectively support the nuclear family.
portion of the study findings have been presented at a poster session at the 18th International Conference on Autism, Intellectual Disability, and Developmental Disabilities held in Hawaii, USA, January 18-20, 2017. The authors wish to acknowledge the grandparents who participated in the study for their openness in sharing their experiences and Trina Chang for her support with data analysis. This research has received an exempt status from the University of Washington Human Subjects Division (HSD) [#51367].