1. Surveys
  2. 2014
  3. November
  4. C
  5. Capstone Research Study
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Exit Survey
 
 
CONSENT TO PARTICIPATE IN A STUDY TITLE OF STUDY: The Impact of Having a Sibling with Chronic Illness on Quality of Life and Family Environment INVESTIGATOR: SPONSOR: Kristen Zalewski Laura G. Stull, Ph.D. [email protected] [email protected] DESCRIPTION: This study investigates whether having a sibling with chronic illness affects one’s quality of life and family environment. Participants will be asked to complete basic demographic information and two surveys, one comprised of 15 items and the other comprised of 90 items. BENEFITS AND RISKS: There are no known risks associated with this project which are greater than those ordinarily encountered in daily life. In general, the information resulting from this study may aid in understanding how having a sibling with chronic illness may impact a person’s quality of life and family environment. CONFIDENTIALITY: Any information obtained about you from this research, including survey, individual or group data, or other findings, will be confidential. If this study is published, data will be reported in statistical form only. RIGHT TO WITHDRAW: You are free to refuse to participate in this study or to withdraw from this study at any time by simply exiting the survey or by informing the experimenter in person, by letter, or by phone. Your decision will not adversely affect your status with the Psychology Department or the University, nor will it cause a penalty or loss of benefits to which you are entitled. APPROVAL BY HUMAN PARTICIPANTS RESEARCH COMMITTEE: The Anderson University Committee for Human Participants Research has reviewed this study. The Committee has determined that this study meets the ethical obligations required by federal law and University standards. If you have any questions, please contact the Committee at 641-4470. VOLUNTARY CONSENT: I certify that I have read the preceding or it has been read to me, and that I understand its content. I acknowledge that I have been given the opportunity to ask questions regarding the study, hazards, discomforts, and benefits that were not clear to me, and that questions asked were fully answered.
 
 
 
 
Age:
   
 
 
 
Sex:
 
Male
 
Female
 
Other
 
 
 
 
Race:
 
Caucasian (Non-Hispanic/Latino)
 
Hispanic/Latino
 
African American
 
Asian
 
Middle Eastern
 
Native American
 
Other
 
 
 
 
Do you currently or have you in the past had a sibling with a chronic illness?
*Chronic illness is being defined as "physical or mental conditions, that affect the daily functioning of individuals for longer than three months a year, or for a duration of hospitalization longer than one month" (cerebral palsy, chronic renal insufficiency, epilepsy, Down’s syndrome (and other chromosomal abnormalities), cystic fibrosis, heart conditions, cancer, juvenile arthritis, asthma, dermatitis (including severe eczema and psoriasis), leukemia and various types of anemia)
 
Yes
 
No
 
 
 
How many siblings do you have?
   
 
 
 
What number child are you? (birth order)
   
 
 
 
What gender is your sibling with chronic illness?
 
Male
 
Female
 
I don't have a sibling with chronic illness
 
Prefer not to answer
 
Other
 
 
 
 
What number child is your sibling with chronic illness? (birth order) *please respond "N/A" if you do not have a sibling with chronic illness*
   
 
 
 
Parents/Guardians' marital status during childhood/adolescence: 
 
Single Parent
 
Married
 
Divorced (not remarried)
 
Divorced (remarried)
 
Step-family
 
Other
 
 
 
 
Here are some statements about life in general that people feel different about. Read each statement on the list and selectthe number that best describes how you feel about the statement.Please start with the survey now by clicking on the Continue button below.
 
 
Using the scale below, indicate your agreement with each item by choosing the most appropriate response for each statement. Please be open and honest in your responding.
Strongly disagree Disagree Slightly disagree Neither agree nor disagree Slightly agree Agree Strongly agree
1. In most ways my life is close to my ideal.
2. The conditions of my life are excellent.
3. I am satisfied with my life.
4. So far I have gotten the important things I want in life.
5. If I could live my life over, I would change almost nothing.
 
 
The following survey contains a number of statements about families. Please read each statement carefully, and decide how well it describes your own family of origin during the time that you were living at home. You should answer according to how you see your family (as it was before leaving for college/during childhood and adolescence).

For each statement there are four (4) possible responses:

1= Strongly agree: Select this response if you feel that the statement describes your family very accurately.
2= Agree: Select this response if you feel that the statement describes your family for the most part.
3= Disagree: Select this response if you feel that the statement does not describe your family for the most part.
4= Strongly disagree: Select this response if you feel that the statement does not describe your family at all.

Try not to spend too much tie thinking about each statement, but respond as quickly and as honestly as you can. If you have trouble with one, answer with your first reaction. Please be sure to answer every statement.
Strongly agree Agree Disagree Strongly disagree
1. Planning family activities is difficult because we misunderstand each other.
2. We resolve most everyday problems around the house.
3. When someone is upset the others know why.
4. When you ask someone to do something, you have to check that they did it.
5. If someone is in trouble, the others become too involved.
6. In times of crisis we can turn to each other for support.
7. We don't know what to do when an emergency comes up.
8. We sometimes run out of things that we need.
9. We are reluctant to show our affection for each other.
10. We make sure members meet their family responsibilities.
Strongly agree Agree Disagree Strongly disagree
11. We cannot talk to each other about the sadness we feel.
12. We usually act on our decisions regarding problems.
13. You only get the interest of others when something is important to them.
14. You can't tell how a person is feeling from what they are saying.
15. Family tasks don't get spread around enough.
16. Individuals are accepted for what they are.
17. You can easily get away with breaking the rules.
18. People come right out and say things instead of hinting at them.
19. Some of us just don't respond emotionally.
20. We know what to do in an emergency.
Strongly agree Agree Disagree Strongly disagree
21. We avoid discussing our fears and concerns.
22. It is difficult to talk to each other about tender feelings.
23. We have trouble meeting our bills.
24. After our family tries to solve a problem, we usually discuss whether it worked or not.
25. We are too self-centered.
26. We can express feelings to each other.
27. We have no clear expectations about toilet habits.
28. We do not show our love for each other.
29. We talk to people directly rather than through go-betweens.
30. Each of us has particular duties and responsibilities.
Strongly agree Agree Disagree Strongly disagree
31. There are lots of bad feelings in the famly.
32. We have rules about hitting people.
33. We get involved with each other only when something interests us.
34. There's little time to explore personal interests.
35. We often don't say what we mean.
36. We feel accepted for what we are.
37. We show interest in each other when we can get something out of it personally.
38. We resolve most emotional upsets that come up.
39. Tenderness takes second place to other things in our family.
40. We discuss who is to do household jobs.
Strongly agree Agree Disagree Strongly disagree
41. Making decisions is a problem for our family.
42. Our family shows interest in each other only when they can get something out of it.
43. We are frank with each other.
44. We don't hold to any rules or standards.
45. If people are asked to do something they need reminding.
46. We are able to make decisions about how to solve problems.
47. If the rules are broken, we don't know what to expect.
48. Anything goes in our family.
49. We express tenderness.
50. We confront problems involving feelings.
Strongly agree Agree Disagree Strongly disagree
51. We don't get along well together.
52. We don't talk to each other when we are angry.
53. We are generally dissatisfied with the family duties assigned to us.
54. Even though we mean well, we intrude too much into each others' lives.
55. There are rules about dangerous situations.
56. We confide in each other.
57. We cry openly.
58. We don't have reasonable transport.
59. When we don't like what someone has done, we tell them.
60. We try to think of different ways to solve problems.
 
 
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