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The general population has been involved in considerable debate about communication and awareness within the context of death and dying. However, there has been little research on how matters of communication on this topic are handled for people with life-limiting illness and intellectual disabilities. This qualitative study explored how staff managed communication about death and dying with people with intellectual disabilities in a Health Service Executive area in Ireland.
Method:
Ninety-one individuals took part in 16 focus groups. Interviews were analysed using framework analysis.
Results:
Participants infrequently discussed death and dying with people with intellectual disabilities. Participants operated most commonly in suspicious awareness environments with people with mild-to-moderate intellectual disabilities, and closed awareness environments with people with severe intellectual disabilities. The majority of participants did not hold absolute opinions that talking about illness, death, and dying with people with intellectual disabilities was “wrong.” Rather, they were concerned that their lack of skill and experience in the area would cause harm if they engaged in open conversations. Relatives had an influential role on the process of communication. Participants were strongly motivated to provide quality care and were willing to consider alternative approaches to communication if this would benefit people with intellectual disabilities.
Significance of results:
Although there has been a shift toward conditional open awareness of death and dying in Western society, people with intellectual disabilities have not been afforded the same opportunity to engage in open discussion of their mortality. This study points to the urgent need to engage in debate about this issue in order to ensure that people with intellectual disabilities receive high quality palliative care toward the end of life.
Social anxiety disorder is one of the most popular psychiatric disorders in the general population and is also well known as a very common comorbid psychiatric disorder among patients with major depression. On the other hand, social anxiety disorder has been termed “the neglected anxiety disorder” because its diagnosis is often missed. Furthermore, the potential impact of social anxiety disorder on the psychological distress of cancer patients has not been reported.
Method:
We encountered two cancer patients with refractory depression after cancer diagnosis, in whom comorbid social anxiety disorder was unexpectedly detected during a subsequent follow-up.
Results:
To the best of our knowledge, this is the first report to discuss the potential impact of social anxiety disorder on cancer patients' distress. These two cases may help to improve our understanding of the complicated mental health problems of cancer patients and the potential influence of social anxiety disorder on patients' follow-up medical treatment.
Significance of results:
Comorbid social anxiety disorder should be considered when a cancer patient's depression is resistant to treatment and the existence of communication problems between the patient and the medical staff is suspected.
Family caregivers of cancer patients suffer from physical, psychological, and social distress and therefore are often referred to as second order patients. Akathisia is a common side effect of antipsychotics and antidepressants that causes great discomfort and even agitation and is often described by patients administered these drugs as the most distressing side effect of their treatment. Several studies of akathisia as a cause of distress in cancer patients have been reported. However, akathisia has not been reported as a cause of distress in family caregivers of cancer patients.
Method/Case report:
A 74-year-old spouse caregiver who was under treatment for major depressive disorder was not able to visit the hospital where her husband, a terminally ill cancer patient, was being treated. Initially, the spouse caregiver thought that she could not visit the hospital because of the symptoms of her depression and her grief about losing her husband. However, careful clinical examination revealed that she was suffering from akathisia in addition to her grief.
Results:
Discontinuation of her sulpiride treatment resulted in the disappearance of her akathisia symptoms, and therefore she became able to visit the hospital and care for her terminally ill husband.
Significance of results:
Drug induced akathisia is a cause of distress in spouse caregivers taking certain drugs. It is important for clinicians to realize that family caregivers might suffer from not only socioeconomic, physical, and psychological problems but also side effects of medication.