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Pediatric palliative care services improve the quality of life for children with life-limiting and life-threatening diseases, although little has been published about variation based on cultural and religious factors. This article sets out to describe clinical and cultural characteristics of pediatric end-of-life patients in a majority Jewish and Muslim country with religious and legal constraints around end-of-life care.
Methods
We conducted a retrospective chart review of 78 pediatric patients who died during a 5-year period and could potentially have utilized pediatric palliative care services.
Results
Patients reflected a range of primary diagnoses, most commonly oncologic diseases and multisystem genetic disorders. Patients followed by the pediatric palliative care team had less invasive therapies, more pain management and advance directives, and more psychosocial support. Patients from different cultural and religious backgrounds had similar levels of pediatric palliative care team follow-up but certain differences in end-of-life care.
Significance of results
In a culturally and religiously conservative context that poses constraints on decision-making around end-of-life care, pediatric palliative care services are a feasible and important means of maximizing symptom relief, as well as emotional and spiritual support, for children at the end of life and their families.
Multiple studies have focused on severely ill patients in the role as parents of dependent children, yet few have explored the thoughts and feelings within this group during palliative home care.
Methods
This qualitative study derives from a pilot intervention study, the Family Talk Intervention (FTI), in specialized palliative home care. The FTI is a support program with the main goal to increase family communication about illness-related topics. The study is based on field notes from 104 sessions with 20 parents taken by an interventionist during intervention delivery. The field notes were analyzed using the principles of qualitative content analysis.
Results
The field notes revealed several challenging situations for parents with severe illness. A major issue was how to find ways to talk to their children about their illness and prognosis. The parents expressed guilt for being unable to fulfill their roles as parents and partners. Existing family conflicts had escalated with the illness, according to some parents. Despite being affected by illness, parents tried to have hope, if only for small things – such as a period of ordinary family life.
Significance of results
Severely ill parents in specialized palliative home care seek support regarding how to communicate and stay connected to their roles in the family, which is a struggle when a parent is cared for at home, while it in contrast may promote normality and hope. Communication with children is vital and needs to be brought to the attention of health-care professionals. A family-centered focus, involving both parents and children, should be embraced.
The PG‐13‐Revised (PG-13-R) is a self-report measure to assess prolonged grief disorder (PGD) in terms of Diagnostic and Statistical Manual of Mental Disorders, fifth revision, Text Revision. This measure has been shown to yield good psychometric properties in Western samples. This study aimed to evaluate the psychometric properties of the Persian PG-13-R.
Methods
Three hundred forty-seven individuals (209 women and 138 men) fully completed the scales. The participants were recruited using convenience sampling. The confirmatory factor analysis (CFA), convergent and divergent validity, and reliability of the Persian version of the PG-13-R were evaluated.
Results
CFA results of a unidimensional model support the construct validity of this version of the PG-13-R. The results of this study demonstrated that this version of the PG-13-R has internal consistency reliability (omega coefficient of 0.93), and the test–retest reliability with an interval of 6 weeks was 0.89. The convergent and divergent validity was shown with significant correlations between the PG-13-R and measures of depression, PTSD, functional impairment, and hope.
Significance of results
Overall, the Persian version of the PG-13-R showed good psychometric properties in the Iranian population.
Alzheimer’s disease is a chronic neurodegenerative disorder that results in total cognitive impairment and functional decline. Family members are the most usual caregivers worldwide, resulting in an increasing total burden and a subsequent degradation of their quality of life.
Objectives
To evaluate the burden of care and quality of life among informal caregivers to Alzheimer patients in Egypt.
Methods
A descriptive research design was used. The study was conducted at outpatient clinics of El-Abbasya Mental Hospital in Cairo, Egypt. This study included 550 informal caregivers of Alzheimer patients. Data were gathered through questionnaires using the Sociodemographic Profile of Family Caregivers, an adopted version of the Montgomery Borgatta Caregiver Burden scale, and Health-Related Quality of Life Scale.
Results
Nearly three quarters (73.5%) of the informal caregivers were female. Additionally, the physical burden among the informal caregivers was the highest (21.58 ± 8.13), while the psychological burden was the lowest (7.48 ± 25.35). Besides, around one-third (30%) of the informal caregivers had a total poor quality of life.
Significance of results
Total burden among informal caregivers of Alzheimer patients was relatively high (64.71 ± 26.86). Moreover, less than one-tenth (8%) of the informal caregivers for Alzheimer’s patients had a good quality of life, whereas more than half (62%) of them had an average quality of life. In the Egyptian context, ongoing health education initiatives for those who care for Alzheimer patients are essential, and additional research employing large study sample sizes in varied contexts is strongly advised.
Thiamine deficiency (TD) presents with various physical and psychiatric symptoms, but no cases with depression-like symptoms have been reported.
Methods
We report a patient with cancer who appeared to attempt suicide as a consequence of depressive mood likely related to TD.
Results
The patient was a 58-year-old woman diagnosed with recurrent endometrial cancer, with lung metastasis and pelvic dissemination. The patient apparently attempted suicide was referred to the psycho-oncology department.
At the time of the examination, major depressive disorder was suspected based on her mental symptoms, but when thiamine was administered intravenously in response to her poor dietary intake, her palpitations, dyspnea, anorexia, and insomnia improved, and her suicidal ideation disappeared at her reexamination 1 hour later after thiamine administration.
Significance of results
It is likely that the observed palpitations, dyspnea, anorexia, and insomnia, as well as the severe depression and the attempted suicide, which were thought to be physical symptoms associated with depression, were actually related to TD. Suicidal ideation and attempted suicide are conspicuous as psychiatric symptoms. However, in such cases, rather than simply starting treatment for depression, it is necessary to consider reversible TD as a cause of these symptoms and perform differential diagnosis to confirm the physical illness.