Children with disabling medical conditions require compassionate and committed parents who can look after them appropriately. Priscilla is the third child of Mr Peter Tay. She was diagnosed with attention deficit hyperactivity disorder (ADHD) and some learning difficulties shortly before she commenced her primary education. Her father, Mr Tay, provides first-hand insights into the challenges of nurturing a child with learning disabilities.
Mr Tay expressed that his two eldest daughters had "done fairly well academically" and he harboured similar expectations for his third daughter. However, he had some difficulty in coming to terms with the fact that Priscilla would have a different journey, and often questioned "why not someone else."
A recent study published in The Oncologist has revealed that caregivers have a proclivity to judge the patient's condition worse than the patient's own rating of their health. This discrepancy in assessment results in more burden on the caregivers, possibly due to perceived poorer health of the patients.
Issues of social isolation and stigmaAs patients may have numerous requirements, caregivers can often be subjected to stresses of a financial or emotional nature. According to Marcy Maierle, the Health Care manager at Beaumont, caregiving is a 24-hour job that is both physically and emotionally taxing. She expresses that, “No matter how much the caregiver loves the person they are caring for, they may still begin to feel trapped or angry.” Caregivers may be unable to pursue their own career or social commitments as a result of their obligations and therefore may also have lower self-esteem as a result.
Mr Tay also commented on the poignant issue of social stigma related to children with learning disabilities and the curiosity that is elicited. “Singapore is a very small place, people are very curious and may pass comments about her,” he commented. This may result in parents becoming immensely defensive and taking extra precaution to shield their child from superfluous attraction or negativity.
How to recognise and prevent caregiver burnoutCaregiver burnout has hallmark signs and symptoms that can be picked up similar to other medical conditions. Individuals with caregiver burnout experience ongoing fatigue and become ill more frequently. They are also unable to concentrate optimally and may have poorer recall of certain details. Burnout can also influence an individual’s temperament, causing them to lose their temper more easily, which may lead to more frequent disagreements in the home setting.
There are several ways that a caregiver may prevent caregiver burnout including conversations with a therapist and accepting that coping with caregiving is a difficult and tedious journey. Seeking support in support groups for caregivers is an outstanding way to not only connect with other individuals in a similar situation, but also acquire perspective on how other individuals manage their caregiving obligations with their own personal lives.
Discrepancy between individual and caregiver assessment of healthArti Hurria and her colleagues at the City of Hope National Medical Center, CA, conducted an official survey for elderly cancer patients to investigate the disparity between the way the caregiver and the patient perceives health. The study included 100 patients, who had a spectrum of cancers, with lymphoma and breast carcinomas being the most prevalent cancers. The age range of the patients was 65 to 91, whilst the caregivers had a much broader age range from 28 to 85 years old.
A consistent finding of the study was that caregivers found that the patients required more physical and emotional support than the patients themselves perceived. A number of reasons have been purported for caregivers rating the patient’s health as poorer than the patient themselves rates it.
Tina Hsu, the first author of the study outlines two possible explanations for this disparity: “One is that older adults with cancer either don't appreciate how much help they require or, more likely, they are able preserve their sense of independence and dignity through a perception that they feel they can do more than they really can. Alternatively, it is possible that caregivers who are more stressed out perceive their loved one to require more help than they actually do need.”
This study also underscores the importance of direct communication between the patient and the healthcare team responsible for his or her care. Due to caregivers distorting the actual health of the patient due to personal attachments, it is essential for healthcare professionals to directly liaise with the patient in order to objectively assess his or her health. MIMS
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