South Dakota Lifespan Respite

South Dakota Lifespan Respite Survey

The South Dakota Respite Coalition is gathering information on respite through this survey to improve access to respite by South Dakota caregivers. This survey is to learn more about your experience as a caregiver with respite. In order to really gauge the need for respite for families across the state, we would like to hear from a variety of caregivers- from parents of children with special needs to adult children caring for their aging parents, and more. Your answers will be kept private and your name will not be on the survey. This survey is optional which means that it is your decision whether or not you want to complete.

Lifespan Respite is temporary or short-term care of a person of any age provided by an individual other than the person’s usual or primary caregiver. Respite is time away (a short break) for the primary caregiver who has the daily responsibilities of caregiving.

Directions: Please respond to the following questions which best describe your situation and experience. Complete a separate survey for each person in your household who relies on you as their primary caregiver due to disability, chronic medical condition (e.g., Rheumatoid Arthritis, Cancer, COPD, Heart Disease, Parkinson’s Disease, etc.) or due to aging or primary diagnosis (e.g., ALS, Alzheimer’s, Autism, Brain Injury, Cerebral Palsy, Dementia, Developmental Disability, Epilepsy, Huntington’s Disease, Mental Health, Multiple Sclerosis, Paraplegia, Stroke, etc.).

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* 1. Do you currently receive respite? (Mark one.)

Yes

No If you marked “No” but have a need for respite, skip to Question #6.

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* 2. If yes, how many hours of respite do you use to allow yourself time away from caregiving? (Mark all that apply.)

Daily - average number of hours:

Weekly - average number of hours:

Monthly- average number of hours:

Vacation/emergency situation - average number of hours:

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* 3. Who provides you with time away from caregiving (respite)? (Mark all that apply.)

Family

Friends

Other individuals (e.g., church, faith based organization, community, etc.)

Agency provider

Adult day/day activity program

Assisted living center/nursing home

Other (please specify)

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* 4. What is the payment source for the respite you (caregiver) receive? (Mark all that apply.)

 Family/friends volunteer (no payment)

 Family/friends paid by caregiver (self-pay)

 Agency provider paid by caregiver (self-pay)

 Other provider, e.g., individual, day center, assisted living/nursing home (type of provider)

 Respite provider paid by a State respite program (name of program)

Other (please specify)

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* 5. Is the amount of respite you receive meeting your needs for time away from caregiving? (Mark one.)

Yes

Somewhat

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* 6. How did you learn about respite? (Mark all that apply.)

211 Helpline Center

Agency provider:

Brochure

Church or faith based organization

Community Organization:

Dakota at Home website (State of SD Department of Human Services)

Friend or family member

Internet website:

Medical provider (clinic, doctor, hospital)

Presentation on Lifespan Respite:

State Agency:

Support Group

Veteran’s Administration

Other (please specify)

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* 7. How many hours of respite would you need to provide you with time away from caregiving? (Mark all that apply.)

Daily - Average number of hours:

Weekly - Average number of hours:

Monthly- Average number of hours:

Vacation/Emergency Situation - Average number of hours:

Other: (please explain)

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* 8. Barriers to receiving respite care? (Mark all that apply.)

Do not have enough money to pay for respite

Not eligible for financial assistance from the State

Shortage of respite providers in my area

Providers are not available for the times that I need respite (overnight, holidays, etc.)

Do not know how to find individual respite providers

Cannot find qualified providers (e.g., behavioral/medical issues, cultural considerations, or need for foreign language or American Sign Language interpreter)

Concerned about the quality of care for my loved one (care recipient)

Not comfortable with someone else providing care to care recipient

Too overwhelmed to find respite care (caregiver burnout)

Care recipient refuses to receive care provided by others, i.e., only wants care from primary caregiver

Do not know enough information about the services that are available

Do not understand what respite is or how to use respite

Other (please specify)

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* 9. How would or how does respite enable you to continue to be a caregiver?

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* 10. If you had access to employ individual respite providers (or additional providers) would that increase your ability to continue to be a caregiver? (Mark one.)

 Yes

 No

 Maybe

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* 11. Would you use a directory of respite providers (e.g., individual, agency, nursing home) if it were available? (Mark one.)

 Yes

 No

 Maybe

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* 12. What do you need that will help you continue to be a caregiver?

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* 13. In addition to “Caregiver” which term best describes your relationship to the person (care recipient) for whom you are the primary caregiver? (Mark one.)

Parent (birth, adoptive, foster) 

Spouse (domestic partner) 

Son (in-law) or daughter (in-law) 

Sibling

Grandparent

Non-relative

Other (please specify)

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* 14. What is the age of the person (care recipient) for whom you are the primary caregiver?

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* 15. Please check all of the following that apply to the person (care recipient) for whom you are the primary caregiver.

Alzheimer’s Disease/Dementia

Chronic Health Condition(s), e.g., Parkinson’s Disease, COPD, Cancer, Heart Disease, Stroke, etc.

Intellectual Disability, e.g., Developmental Disability, Autism, etc.

Mental Health e.g., Depression, Bi-Polar, Schizophrenia, Anxiety, etc.

Physical Disability

Sensory Disability

Terminal illness

Traumatic Brain Injury

Other (please specify)

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* 16. What is the county and zip code where you live? County

County

Zip Code

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* 17. What is your race/ethnicity? (Mark one.)

American Indian or Alaska Native

Asian

Black or African American

Hispanic or Latino

Native Hawaiian or Other Pacific Islander

White

Don’t Know

Other (please specify)

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* 18. What is your gender? (Mark one.)

 Female

 Male

 Other

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* 19. What is your age?

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* 20. What is your marital status? (Mark one.)

Single 

Married 

Separated/Divorced/Widowed

Other (please specify)

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* 21. What is your employment status? (Mark one.)

Full Time (40 hours plus per week) 

Part Time (34 hours or less per week)   

Unemployed

Military

Student

Retired

Other (please specify)

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* 22. What is your annual family income range? (Mark one.)

Under $12,000 

$12,001 to $25,000 

$25,001 to $45,000

$45,001 to $75,000

Over $75,001

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* 23. Including yourself, how many people live within your household? (Mark one.)

10 Plus

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* 1. Do you currently receive respite? (Mark one.)

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* 2. If yes, how many hours of respite do you use to allow yourself time away from caregiving? (Mark all that apply.)

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* 3. Who provides you with time away from caregiving (respite)? (Mark all that apply.)

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* 4. What is the payment source for the respite you (caregiver) receive? (Mark all that apply.)

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* 5. Is the amount of respite you receive meeting your needs for time away from caregiving? (Mark one.)

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* 6. How did you learn about respite? (Mark all that apply.)

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* 7. How many hours of respite would you need to provide you with time away from caregiving? (Mark all that apply.)

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* 8. Barriers to receiving respite care? (Mark all that apply.)

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* 9. How would or how does respite enable you to continue to be a caregiver?

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* 10. If you had access to employ individual respite providers (or additional providers) would that increase your ability to continue to be a caregiver? (Mark one.)

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* 11. Would you use a directory of respite providers (e.g., individual, agency, nursing home) if it were available? (Mark one.)

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* 12. What do you need that will help you continue to be a caregiver?

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* 13. In addition to “Caregiver” which term best describes your relationship to the person (care recipient) for whom you are the primary caregiver? (Mark one.)

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* 14. What is the age of the person (care recipient) for whom you are the primary caregiver?

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* 15. Please check all of the following that apply to the person (care recipient) for whom you are the primary caregiver.

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* 16. What is the county and zip code where you live? County

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* 17. What is your race/ethnicity? (Mark one.)

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* 18. What is your gender? (Mark one.)

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* 19. What is your age?

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* 20. What is your marital status? (Mark one.)

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* 21. What is your employment status? (Mark one.)

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* 22. What is your annual family income range? (Mark one.)

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* 23. Including yourself, how many people live within your household? (Mark one.)

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* 24. Please provide additional thoughts you would like to share: