What would be an easy and less time-consuming measure to identify/rate psychological distress/issues, in parents of children suffering from cystic fibrosis, in a paediatrics outpatients department?
"children were individually assessed before and immediately after receiving anesthesia to dental treatment through the Trait Anxiety Inventory-State. We used an inventory of state-trait anxiety in the forms C-1 and C-II and a Semi-Structured Interview with the companion"
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Thank you, this is helpful, although I am looking for some meaures to find the psychological distress in parents of the children who suffer from Cystic firbrosis.
The attached link is for the Social Sciences Measurement Instrument database that provides several different instruments that you can peruse for what could work for you. I saw one Autism Parenting Stress Index, so I am assuming that there will be one for Cystic Fibrosis.
In the last 20 years there has been an explosion of research on informal caregivers (those who are not payed) of family members and friends. To my knowledge, the first formal research on this topic was done in 1953 on family members of persons with schizophrenia. In the late 1970s this research took off in the study of caregivers of persons with Alzheimer's disease and dementia. Since then researchers have examined family members of persons with mental illnesses and a host of physical illnesses and injuries.
Many of these papers have not used a theoretical model to guide their research and in some cases it has been difficult to understand the stressors, distress, and other accompanying outcomes of caregiving.
Several scales have been developed to examine what has been called burnout, burden, etc. These are supposed to be proximal responses to specific factors in the caregiver's environment, although some researchers use them as a distal outcome. You should try to measure both proximal (characteristics of the care-recipient in terms of anger, depression, anxiety;the type of illness, function of care-recipient, help required, length of illness, etc). There are also distal stressors such as the neighborhood, country, weather, war, economics, other family members that add to distal distress (anxiety, depression). Several attempts have been made to measure proximal distress or what some people call subjective burden.
Please note that proximal and distal distress are a function of much more than just care-recipient characteristics, but also include characteristics of the caregivers.