Abstract
The purpose of this study was to examine the involvement of grandparents during hearing detection and intervention. Data were collected and analyzed from survey responses of 50 parents and 35 grandparents of children of varying ages who have hearing loss. Parents described important types of support that grandparents provided including frequent emotional support, nurturing, and spending time together. Grandparents reported that they frequently implemented therapy strategies with their grandchild, but did not attend therapy sessions. Results of this study provide recommendations for service providers and information about the supportive role of grandparents in hearing detection and intervention.
Keywords
The importance of examining grandparent involvement in hearing detection and intervention may be best understood in light of the family ecosystem theory. This theory considers the individual and family as well as how they interact with the environment. In this framework, the family system is defined as the “social system that nurtures individuals and governs the interrelationships that occur in the individual’s environment” (Bristor, 2003, p. 35; Hill, 1949, 1958; McCubbin & Patterson, 1983). For children with hearing loss, the family’s social system may consist of clinical providers who detect hearing loss, therapy providers, parents, children and siblings, and extended family members (e.g., grandparents). The environment consists of natural, human-constructed (e.g., hearing aids or implants), and human behavioral elements (e.g., interactions between grandparents, grandchildren, and parents). Based on this theoretical framework, the family system is recognized as playing an important role in child development.
Given family ecosystem theory, it is essential to consider how the entire family system deals with hearing detection and intervention services. Discovering that a child has a hearing loss and seeking intervention services can be a stressful and emotional experience for parents. Each member of a family has a role and their actions influence other members of the family. For this reason, grandparent involvement may have a strong positive influence on parents as well as children during this process. This notion is further supported by research indicating that “when dealing with stress, the presence of at least one supportive relationship can greatly enhance the coping ability of the individual, and the capacity to grow from the experience” (Bristor, 2003, p. 207). Burr and Klein (1994) suggested that families can use specific coping strategies to deal with stressful situations. Research findings suggest that members of family systems provide support to one another when dealing with stressful situations (Bristor, 2003). It would follow that grandparents serve a potentially vital role in providing support to family members during times of stress to strengthen the entire family system. Specifically, the family systems paradigm has been applied to examining supports for children who are deaf or hard of hearing. Morton (2000) surveyed parents regarding the involvement of grandparents and reported that grandparents are a valuable source of support for parents of children who are deaf.
While adjusting to the diagnosis of a hearing loss, research suggests that parents may benefit from receiving support from a variety of different sources. Zaidman-Zait (2007) reported that parents preferred sources that provided emotional support, helped with practical needs, helped in monitoring the child’s progress, and provided information. Most parents in this study (74.1%) also noted that having a family member or a friend who was consistently involved in the process was helpful to them. Family members or friends provided support by seeking out information, helping parents do daily tasks, being caring, being encouraging, providing companionship, and becoming involved in rehabilitation efforts. These potential benefits of social support have also been substantiated by a number of other studies. Calderon and Greenberg (1999) reported that mothers who reported high social support were rated as better adjusted despite degree of hearing loss or life stress. Similarly, Dunst, Trivette, and Cross (1986) reported that the type or amount of services had less of an effect on the child’s progress in development than did the number and quality of social supports for parents.
Although grandparents are often poised to provide essential social and emotional support, a number of factors may influence grandparent involvement. Nybo, Scherman, and Freeman (1998) suggested that healthy relationships between a grandparent and his or her grandchild who is deaf were dependent on three things: physical proximity between the individuals, the ease of communication between grandparents and grandchild, and the strength of the grandparent–parent relationship. Nybo and colleagues also reported that grandparents experienced feelings of helplessness and confusion after a child in their family was diagnosed as being deaf. Additional obstacles to involvement may occur with limited access to informational resources regarding their grandchild’s hearing loss (Luterman, 1987).
Considering the potentially important role of grandparents in the family system, further investigation is warranted to examine the experiences and roles of grandparents after identification of deafness. Given previous research findings, grandparents may be an underutilized resource in strengthening the family system during the period of hearing detection and intervention. This study distributed a survey to parents and grandparents of children with hearing loss to determine the ways in which grandparents are involved in the detection of hearing loss and reception of intervention services. This study elicited retrospective and current information regarding the status of the grandparent relationship. At the time children were identified with hearing loss, 96% were below the age of 48 months old. At the time the survey was administered, grandchildren ranged in age from less than 2 years old to more than 20 years old. For this reason, the respondents of this survey were not limited to family members of young children. This study sought to address the following questions:
How are grandparents involved in hearing detection and intervention?
What factors facilitate or impede grandparent involvement?
Method
Procedures
Participants
Parents of children from a previous study (Jackson, 2011; Jackson, Wegner, & Turnbull, 2010) who indicated a desire to be contacted about follow-up studies and who lived in the southern region were invited to participate. Detailed descriptions of the procedures for soliciting the original sample and demographics of the earlier samples are available in the previous publications. In brief, invitations were sent to agencies and service providers representing diverse approaches, agency type (public/private), and geographic location. Cooperating agencies included public and private schools for the deaf, oral schools, Part C programs, and speech-language hearing clinics. An informational letter was sent to agency directors, educators, family-resource specialists, and professional service providers who were asked to distribute the enclosed invitations to eligible families who included a child with hearing loss. Subsequently, an electronic invitation was posted on the websites of national family support organizations.
Information about the current study was also made available at a state-level conference which resulted in three additional parent participants. No compensation was provided to participants who completed the survey. On average, parents received two e-mails with information about the study approximately 2 weeks apart. Parents were given an option of three methods to complete the survey: online survey, mail survey, or phone interview. All methods followed a standard script in which questions were asked in the same manner for each participant. Of the 73 parents invited to participate in the study, surveys were received from 50 parents (42 online surveys, 4 paper surveys, 3 surveys completed at the conference, and 1 phone interview), reflecting a response rate of 68.5%. Two e-mails were returned because the addresses were no longer valid and 2 other respondents were excluded because their child’s grandparents were deceased. Therefore, the conditional response rate was 72.5%. Of the 50 parents who invited their child’s grandparents to participate, 28 online surveys, 6 paper surveys, and 1 phone interview were collected. The number of surveys completed throughout the various options totaled 50 parent surveys and 35 grandparent surveys.
Demographic characteristics of parents and children
The completed surveys were from parents receiving services in the southern regions of the United States with 32% from Florida, 18% from Virginia, 12% from Georgia, 12% from North Carolina, 10% from Texas, 6% from South Carolina, 4% from Kentucky, 2% from Arkansas, 2% from Louisiana, and 2% from Maryland. Respondents received services from private practitioners, including an audiologist or an ENT (49%). Other respondents noted that they received services from university clinics (36%) and other facilities such as residential programs, elementary schools, specialty centers, or outpatient clinics in a hospital (14%). The remaining 3% did not respond to where services were received. Demographic information also included marital status, employment status, education level, and the size of community in which they resided (refer to Table 1).
Demographics of Family Respondents
The demographic characteristics of children in this study varied on a number of factors. In particular, the age of the child at the time the survey was completed varied from 22 months to 286 months, with a mean age of 96 months and a standard deviation of 56 months. Children in this study were identified from birth to 6 months (32%), 7 to 18 months (40%), 19 to 36 months (20%), 36 to 48 months (4%), and older than 48 months (4%). Also, the degree of hearing loss varied in this study with 8% of children having a mild to moderate hearing loss, 18% having a moderate to severe hearing loss, 8% having a severe hearing loss, and 62% having a profound hearing loss. The remaining 4% did not respond to their child’s degree of hearing loss. Children in this study varied in their use of sensory devices with 34% using hearing aids, 42% with a unilateral cochlear implant, 14% with bilateral cochlear implants, and 6% using other sensory devices. The remaining 4% did not respond. The communication mode among respondents in this study varied with 48% using an auditory-verbal approach, 16% using American sign language, 14% reporting simultaneous or total communication, 18% using oral speech without sign language, and 2% using cued speech. The remaining 2% indicated that they used another communication mode. It is important to note that only hearing disability was assessed through the questionnaire. For this reason, it is not known whether any of these children had additional cognitive or physical disabilities.
Demographic characteristics of grandparents
The grandparents in the study were classified based on their relation to their grandchild, marital status, education, ethnicity, and the size of community in which they resided (see Table 1). Many respondents (51%) were the child’s maternal grandmother, 22% were the paternal grandmother, 17% were the maternal grandfather, 2% were the paternal grandfather, and 2% were the step-maternal grandmother. The remaining (5%) did not respond.
Grandparents also answered questions about the distance they lived from their grandchild and the frequency of phone calls or visits they had with their grandchild. When grandparents were asked how far they lived from their grandchild, 32% noted that they lived within a 30-min drive from their grandchild. Other respondents (14%) noted that they lived between 30-min and 1-hr drive away, 27% answered that they lived a 1- to 3-hr drive away, 8% said they lived a 4-hr drive or more away, 16% noted that they had to fly to visit their grandchild, and the remaining 3% did not indicate their distance. When grandparents were asked how often they called or visited their grandchild, 61% said they called or visited a few times a week to once a week, 14% said once every 2 weeks, 8% said once a month, 11% said once a year, and the remaining 6% did not respond.
Measures
Parent questionnaire
Parents answered 10 open-ended and 4 closed-ended questions about how their child’s grandparents were involved in the process of hearing detection and intervention of the child with hearing loss. In addition, parents were questioned regarding the current status of the relationship with the child’s grandparents. In addition, 20 multiple-choice questions were included to solicit demographic information for the parent and child with hearing loss.
Grandparent questionnaire
Grandparents were asked 5 open- and 10 closed-ended questions about their involvement with their grandchild. Topics in this survey aimed to examine and describe the resources grandparents received, factors that influenced their involvement, emotions they experienced, advice they would provide to other grandparents, and their current level of participation in a range of activities. This questionnaire provided retrospective and current information regarding the relationship with the child’s grandparent. The grandparent survey also included 8 multiple-choice questions about demographic characteristics. Readers may contact the authors to obtain copies of the parent and grandparent questionnaires used in this study.
Analysis
Responses were analyzed using descriptive statistics to examine the distribution of responses from parents and grandparents. Open-ended responses were analyzed using qualitative methods (Lincoln & Guba, 1985). The responses were first segmented into units of data, consisting of thoughts, comments, or statements. Next, these units were clustered using a constant comparative method. Units that shared similar concepts were clustered in preliminary categories. The preliminary categories were derived on an individual participant level first and then compared with other participants’ units that shared similar sentiments to examine themes across participants. The second author reread the written responses to verify that the identified themes emerged from the data. Agreements and disagreements were discussed between the investigators until consensus was reached. Finally, the data was counted by theme to note the frequency of responses that were similar in parent and grandparent responses. Member checking and participant debriefing was used to ensure rigor (Denzin & Lincoln, 2000; Lincoln & Guba, 1985). Transferability of the themes was enhanced by including grandparents and parents who differed in their geographic location, services, children’s ages, and other characteristics. This information is described in Tables 2, 3, and 4 in the number of theme units and percentages.
Parents’ Perceptions of Grandparent Involvement in Intervention
Note: Initial steps include attending appointments, hearing tests, implantation of cochlear implant, and mapping sessions. Learned new skills include learning sign language or auditory-verbal therapy techniques.
Parents’ Perceptions of Support Provided by Maternal and Paternal Grandparents
Parents’ Perceptions of Factors Influencing Grandparent Involvement
Results
Grandparent Involvement
On closed-ended questions, grandparents were asked to indicate their level of participation in a group of activities over the past 12 months. Overall, grandparents responded that they participated in activities outside of the therapy setting. Most grandparents (82.3%) noted that they did not attend therapy sessions frequently. Nearly half of the grandparents (48.5%) had never participated in therapy sessions. More than half (64.5%) of grandparents responded that they integrate communication strategies into everyday activities, regularly or sometimes practice skills outside of sessions (62.6%), and always or consistently ensure consistent use of hearing aids or a cochlear implant (63.3%). Moreover, 81.3% of grandparents noted that they seek out and read informational resources regularly. Grandparents (57.6%) indicated that they never attended social gatherings or support groups with other grandparents of children who have a hearing loss and 54.8% noted that they had never accompanied their grandchild to special appointments like earmold fittings, sign language classes, and implant mapping sessions.
In addition, parents described the involvement of maternal and paternal grandparents on specific aspects of early intervention (see Table 2). Visual inspection of the data suggested potential differences in parents’ perceptions of grandparent involvement, specifically noted between maternal and paternal grandparent involvement. Because paternal grandparents were underrepresented in the group of respondents, further analyses or conclusions about these potential differences were beyond the scope of the current study.
Open-ended questions asking parents to describe how grandparents provided support resulted in a total of 263 units or statements on the topic. Specific information about the ways grandparents were involved and the distribution of units for each category is provided in Table 3. The types of support that parents noted grandparents provided included emotional support (33% of units), nurturing their grandchild (28%), caregiving/spending time together to help lessen burden on parent (27%), aiding in decision making (6%), and monetary support (6%). Emotional support included listening to parents, being caring or understanding, encouraging, and comforting. Parents noted that grandparents were nurturing to their grandchild by providing love, acceptance, and confidence. Also, grandparents reportedly provided support by spending time with their grandchild while babysitting, transporting grandchild around town, or being physically present in their lives. Grandparents were noted by parents to aid in decision making by being helpful with parenting skills and supporting parents’ decisions. Grandparents also provided financial support, helping with the costs of special services, hearing aids, and/or therapy sessions.
Factors That Influence Grandparent Involvement
Based on responses to open-ended questions, there were themes in the 148 units regarding mediating factors or obstacles, facilitators, and challenges to grandparent involvement. Detailed information regarding the distribution of the units is provided in Table 4. As noted by 66% of parents’ comments, parents reported that grandparents experienced obstacles in their involvement. In summary, obstacles included distance, being confused about the process of detecting a hearing loss and reception of intervention services, not understanding hearing loss or feeling uncomfortable with the technology, having a poor relationship or seeming disinterested, poor health, lack of knowledge about how to support communication, or financially unable to help. As reflected by 25% of comments, parents noted factors that strengthened or facilitated grandparent involvement, such as informational resources about hearing loss, desiring to help, overcoming distance obstacles, respecting family roles, and being trustworthy. Parents also identified factors that impeded their involvement, which comprised 9% of their comments. These weaknesses included that grandparents did not appreciate or understand their role within the family system, did not treat their grandchild equally compared with other grandchildren, and were hesitant in communicating concerns.
Grandparents’ perceptions of influencing factors
Grandparents also noted obstacles to their involvement in the process of hearing detection and intervention. These obstacles included distance (72%), advancing age or health issues (20%), feeling uninvited or unwelcome (16%), or lacking knowledge on how to communicate with their grandchild (8%). On open-ended questions, grandparents noted specific themes about their experiences, resulting in 199 units. Grandparents noted that they experienced emotions after hearing loss detection including sadness/depression (30%), anxiety (22%), fear (13%), anger (6%), denial (5%), shock (2%), guilt (2%), and concern for grandchild’s lifetime development (2%). Other grandparents focused on positive emotions they experienced such as relief (3%), thankfulness or gladness (3%), and confidence in their grandchild’s potential (3%). When grandparents were asked about informational resources on hearing loss, they reported receiving informational support from their grandchild’s parents (26%), websites (20%), brochures or pamphlets (15%), conferences or support groups (11%), professionals (9%), and other resources (7%). Some grandparents (13%) reported a lack of informational resources.
When grandparents were asked about advice they would give to other grandparents who have a grandchild with hearing loss, they responded with a variety of answers. Grandparents noted that they would advise other grandparents to learn their grandchild’s communication mode and learn about hearing loss (24% of units), support their grandchild and the parents (22%), be loving (17%), treat their grandchild normally (15%), be involved in their grandchild’s life (12%), be patient (3%), have a positive attitude (3%), and have faith in God (3%).
Discussion
The perceptions of parents and grandparents offer insights regarding grandparent involvement in hearing detection and intervention. The majority of parents in this study perceived grandparents to be a valuable source of support. Participants identified valuable ways grandparents provided support, including emotional support, nurturing, helping in decision making, and providing monetary support. The findings also identified particular challenges to grandparent involvement such as physical distance, poor health, or lack of knowledge about the detection of hearing loss and intervention services.
The finding that grandparents in this study generally had a high level of involvement is consistent with previous studies (Morton, 2000; Nybo et al., 1998). The current findings are similar to those reported by Morton (2000) who also noted support from maternal grandparents and to a lesser extent from paternal grandparents. Interpretation of differences between maternal and paternal grandparent involvement in the current study is limited because paternal grandparents were underrepresented and the majority of parent respondents were mothers (95%). Fathers and mothers may differ in their relationships with paternal grandparents. Maternal respondents may have been more likely to seek support from their own parents (maternal grandparents) than their in-laws, which would partially explain lower ratings of involvement and support for paternal grandparents.
The finding that grandparents received informational resources from parents and other varied sources is also consistent with previous research (Luterman, 1987; Zaidman-Zait, 2007). Grandparents appear to have infrequent or limited access to professionals as a source of informational resources (Luterman, 1987). Access to sources of information and support appear to be important in light of the grandparents’ report of experiencing a range of emotions following the detection of a hearing loss. Grandparents in the current study discussed negative emotions more frequently which could negatively impact their ability to be involved and help their grandchild. The emotional reactions reported by grandparents in the current study are consistent with the previous research of Nybo et al. (1998) who reported that grandparents experienced feelings of helplessness and confusion after detection of hearing loss.
Clinical Implications
Results suggest that service providers may want to give further consideration to the extent and manner in which they invite and facilitate grandparent involvement in family-centered intervention. Considering the complexity of hearing detection and intervention, grandparents may be a strong positive resource for many parents of children with hearing loss. Given this potential source of support, service provides may consider asking parents in early intervention about the desired or potential roles of grandparents in their children’s rehabilitation. Based on parental preferences, clinicians may foster grandparents’ active roles in supporting the family system during detection of hearing loss and intervention by providing access to informational resources, clinician models, and family support. As grandparents reported having an active role in carryover of intervention activities, service providers may consider extending invitations to grandparents to have them attend therapy sessions where they participate in the session and learn new skills along with their grandchild and his or her parents. In addition, service providers can provide grandparents with support groups to help them work through obstacles. Service providers may need to make resources and supports accessible to grandparents in family-friendly wording and user-friendly venues. Grandparents may benefit from informational resources to assist them in dealing with emotional responses following identification of hearing loss. Connecting grandparents to family support organizations in their communities may assist with their adjustment and facilitate their helpfulness to parents.
Limitations are noted in the current study. The majority of the data collected from parents are from families where maternal grandparents chose to participate. Because paternal grandparents are underrepresented in the current study, results must be interpreted cautiously. In addition, respondents were primarily well-educated Caucasians with financial resources, which may influence the ways grandparents are involved. It is important to note that generalization is limited by the fact that this was a convenience sample. The findings are more likely to generalize to populations who share similar demographic characteristics as the families in this study. To more clearly examine how maternal and paternal grandparents are involved, it is recommended that equal numbers of matched maternal and paternal grandparents be included in follow-up studies. Further studies are also desired to investigate the involvement of a more diverse sample of grandparents, including those who differ in geographic region, socioeconomic status, and cultural and linguistic backgrounds. It may also be interesting to conduct additional exploration of parents’ perceptions and preferences for being a liaison of information to grandparents. Despite limitations, findings of this study provide valuable information about grandparent involvement in hearing detection and intervention services for children with hearing loss.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.