Dear Muhammad, 

These papers may give you some ideas: 

"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"

Article Factors affecting psychological stress in children who coope...

Article Psychological Stress in Children May Alter the Immune Response

Conference Paper Assessment of Children's Stress Undergoing Conventional and ...

Article Pain and Distress in Inpatient Children According to Child a...

Article Non-pharmacological interventions to manage fatigue and psyc...

Dear Beatrice, 

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. 

Muhammad:

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.

Many thanks,

Debra

http://www.midss.org/tools/search?search_api_views_fulltext=parents+psychological+distress+caused+by+children

http://www.midss.org/content/autism-parenting-stress-index-apsi

Some more papers:

Article Psychological Aspects of the Care of Children With Cystic Fibrosis

Article Parental perceptions of risk and protective factors associat...

Article Parental knowledge reduces long term anxiety induced by fals...

Article PSYCHOLOGICAL ASPECTS OF LIFE QUALITY AT CHILDREN AND TEENAG...

Article Psychological Aspects in Treatment of Children with Cystic Fibrosis

Article Psychological aspects of cystic fibrosis in children

Dear Muhammad,

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.

We have written extensively on these topics.

I wish you well with your work.

Peter

Thank you, Peter! Really helpful.

The suffering of parents of children with incurable or degenerative diseases is mathematically incalculable. There will, however, always a range of subjective relativity, which parameters will always depend on the psycho-emotional structure and on the affective and relational dynamics of the appraiser and on the love dimensions, feelings and affections of parents in relation to their sick child, as the expectations and projects that their parents have toward their children, as well as their own human, religious and social concepts about life and death