CAREGIVER NEEDS QUESTIONNAIRE
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- Aleesha Perkins
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1 CAREGIVER NEEDS QUESTIONNAIRE Caregiver Information Study ID Number: Initials: First/MI/Last What is your relationship with the patient? (Check one.) Spouse or partner Son or daughter Brother or sister Parent Friend Other (please specify) Please estimate your total household income before taxes last year. $50,000-75,000 $75, ,000 $100, ,000 $125, ,000 $150, ,000 Over $200,000 Under $50,000 Do you live with the patient? Y/N Date Age Gender Male Female What is the highest level of education you have obtained? (Check one.) Less than high school High school Associates degree Bachelors degree Graduate/professional degree How long have you been caring for the patient? (Include any time spent caring for the patient due to symptoms before brain tumor diagnosis.) Months Approximately how many hours per week do you spend caring for the patient now? Page 1 of 5
2 Disease, Symptoms and Treatment Getting information about what causes brain tumors Getting information about the biology of brain tumors Understanding how your doctor uses medical examinations Understanding how your doctor uses imaging tests (e.g. CT scans, MRI scans) Understanding enough to help make decisions about treatment options Knowing what symptoms to look for in the person I am caring for and knowing what to do about them Knowing enough about the drugs the person you are caring for is taking (side effects, timing and amount) Knowing enough about the side-effects of the treatments (e.g. radiation, chemotherapy) Knowing who to contact or where to go to when there is a medical problem Knowing how to help manage pain Dealing with lower energy in the person I am caring for Knowing what foods and activities are good for Comments: Do you have any additional comments about your needs concerning the disease, symptoms, or treatment? Page 2 of 5
3 Health Care Provider (UCSF Neuro-Oncology) Having telephone access to health care provider who knows me Knowing which member of my patient s health care team to call regarding a particular problem Getting enough nursing care in the home from community agencies Getting medical supplies or equipment for use in the home Understanding how to make appointments for the patient Knowing how to transport the patient to and from health care facilities via car or public transportation Understanding how to maneuver the patient around health care facilities Feeling respected by my health care provider Feeling that is respected by my health care provider Comments: Do you have any additional comments about your needs concerning your healthcare provider? Page 3 of 5
4 Daily Living and Finances Getting information about the support services available to me and Getting help with cooking, cleaning, shopping, etc. Getting help with childcare or caring for other family members Finding time for my personal needs, including rest and sleep Having someone fill-in for me when I need it Getting transportation to and from appointments for the person I care for Understanding what is covered by benefits/extended medical insurance Understanding the Family Medical Leave Act and how it applies to my situation Getting support and understanding from my boss or employer for my caregiving situation Getting help with financial issues for the person I am caring for Comments: Do you have any additional comments about your needs concerning daily living and finances? Page 4 of 5
5 Emotional Having the opportunity to talk to someone who has been through a similar experience Finding ways to talk about changes in the roles of family members Finding ways to help maintain the independence he or she wants Finding the best way to comfort and reassure the person I am caring for Being able to speak openly about the cancer with Coping with the physical or emotional changes in Coping with the changes in my social, work and family life Dealing with the reaction to the illness of my family and friends Accepting the cancer diagnosis in the person I am caring for and the uncertainty about the future Support dealing with my anxiety or stress Comments: Do you have any additional comments about your emotional needs? Page 5 of 5
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