By Sophie Cheng Xiaolin
Hearing loss is the third most prevalent impairment among children in Singapore (Chihiro, 2011; Low, 2005). Recent advancements in technology has enabled 80 to 90 percent of children with hearing loss to receive education in mainstream schools (Low, 2005). However, there are issues related to the acceptance of these children in society, such as stigma and loss of self-worth (Poon, 20010; Vergrugge et al., 2005). In fact, Singaporeans still hold negative feelings toward assistive devices in general (Verbrugge et al, 2005). Studies have also shown that there is a 65 percent chance that a child with special needs experience bullying on any given day (Taylor, 2010). However, there is limited research findings on the experience of both children with hearing loss and their caregivers. Leiter et al (2004) have advocated for the experience of mothers to be further explored as they are profoundly affected by their experience of caring for their child with special needs. Notably, the term "mother-blame" was coined to describe the prevelant culture of blaming mothers for the poor outcomes of their children (Ryan, 2012).
Noting the above-mentioned context, we investigated the following the question: What is the experience of caregiving mothers (referred to as “caregiving mothers” in this study) with hearing-impaired children who are enrolled in regular schools. Improving our understanding of the experience of these caregiving mothers will help health and hearing care professionals better support this patient population as well their caregiving mothers with regard to the child’s experience in mainstream education.
To understand their experience, qualitative interviews were conducted for this IRB-approved study. Participants were recruited based on inclusion and exclusion criteria (i.e., cargiving mothers of children aged 7-12 who require hearing devices and enrolled in mainstream schools). Informed consent was taken and individual interviews, conducted in English or Mandarin. Interviews were recorded, transcribed verbatim or translated, coded, and analyzed. The following questions were explored from the point of view of caregiving mothers:
1. Should my child receive hearing device intervention?
2. Should I enforce compliance?
3. What can I hope for in my child?
“Should my child receive the hearing device intervention?”
Participants verbalized their hesitation for using hearing devices. Some felt worried about disturbing their pre-operation homeostatic situation as they have found a way to cope. They verbalized fears on the success of the cochlear implant operation, future costs of hearing device(s) and the unknown future. One participant said “Now we get funding. The equipment spoils easily. How is she going to afford it next time?”
“Should I enforce compliance?”
Participants felt a sense of ambivalence about the use of the device. While they knew the device helps in hearing (ensures communication, learning, social interaction and safety), they were aware of the stigma, cost of use, and difficulty of use. A participant shared candidly “Sometimes I know they are talking about my children nonetheless. I will always feel sad about that.”
“What can I hope for in my child?”
In this study, most participants have accepted their child’s hearing problems, though one shared her hope for her child’s hearing loss to be cured. She shared: “Sometimes when she is sleeping(without any hearing device), she will (say) ‘mummy mummy I can hear from this ear.’ I (felt) so happy…”.
The other participants shared their hope for normalcy for their children, particulalry in becoming independent, finding employment, and getting married in the future. One participant shared, “I asked [my child], ‘What about the future? Wouldn’t you work?’ He asked if he could always just accompany me. I said that he will to find work someday. He remained silent. I said your parents will grow old, so if you want to survive you have to work.”
KEY THOUGHTS FOR CARE PROVIDERS
The study uncovers three key thoughts for health and hearing care providers. First, we need to be patient with parents’ ambiguity in making clinical decisons (e.g., to operate or not) regarding the care of their children. This speaks to mother-blaming where mothers are blamed and deemed responsible for the outcomes of their children (Green, 2007; Ryan, 2012). Caregiving mothers may feel the burden of making vital decisions as they may feel responsible for any possible outcomes. As practitioners, we should think about the support they may need in making decisions, such as financial assistance (e.g., insurance to obtain a hearing device), knowledge (e.g., trajectory of hearing loss), and advocacy (e.g., anti-stigma). This will help reduce the ambiguity of outcomes so that mothers can be in less distress when making these decisions. In the event where these mothers still feel the weight of ambiguity, empathy extended to these mother may prove to be the support they need.
Second, we need to appreciate the ambivalence on compliance. The concept of cyclical grieving can be applied here (Blasca, 1998). As caregiving mothers become unsure about what to hope for (i.e., healing? normalcy?) and deal with the cyclical grief, it might be difficult for them to ensure compliant use of the devices. This study showed that while caregiving mothers were aware of the benefits of compliance, they had their reservations due to stigma and their continued hope for healing. The idea of normalcy is also challenging for them to grapple with. While the hearing device helps their child hear, the device itself is a physical symbol and reminder that their child is different.
Lastly, we need to consider the anxiety surrounding the ability to hope. Young & Tattersall (2007) found that the joy of motherhood was often over overshadowed by the parents’ need to deal with a child’s diagnosis of hearing loss, in this case. While the participants in this study verbalized fears about their child’s future, they also held hopes for their child’s future. Being associated with someone with a stigmatized condition (i.e., hearing loss), these mothers may experence courtesy stigma (Green, 2003). While hearing care providers would want to promote positivity and hope to these caregiving mothers, it is important to recognize their anxiety and experience of being stigmatized. We can provide more appropriate interventions through empathy and supportive services (e.g., adult services for those with hearing impairment, advocacy, etc.).
This study had a small sample size so it’s difficult to generalize the findings. In addition, because of the need to translate some interviews from Mandarin to English, some data could have been inadequately translated. Nonetheless, the experiences of these caregiving mothers shed light on their complex dilemmas despite the success of their children with hearing devices and attendance in mainstream schools. With these findings, hearing care providers can better design interventions that fully address the needs of the patients and their families.
About the Author: Sophie Cheng is a senior medical social worker at Sengkeng General Hospital in Singapore, working primarily with with patients with hearing loss and their families.
ACKNOWLEDGEMENTS: This study was supported by the Medical Social Workers, Ms. Elcoe Wan and Ms. Koh Poh Lin.
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