Codebook: 1999 Caregivers Survey

Section C: Caregiver's Experience

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START_28		Col. 9518	Character  4
		Set Start Time
	Freq	Value	Label
	1293	-	Time: HHMM

		1. Now I am going to read some statements that describe some other problems people sometimes have when taking care of another person. As I read each statement, please tell me if that statement is TRUE or FALSE for you, when you take care of [sample person].
CGE_1_A		Col. 9522	Character  1
		a I don't have as much privacy when I take care of [sample person].
	Freq	Value	Label
	277	1	True
	961	2	False
	8	D	Don't Know
	31	R	Refused to Answer
	1277	-	Total
CGE_1_B		Col. 9523	Character  1
		b Taking care of [sample person] limits my social life or free time.
	Freq	Value	Label
	461	1	True
	778	2	False
	7	D	Don't Know
	31	R	Refused to Answer
	1277	-	Total
CGE_1_C		Col. 9524	Character  1
		c I have to give [sample person] almost constant attention.
	Freq	Value	Label
	297	1	True
	942	2	False
	8	D	Don't Know
	30	R	Refused to Answer
	1277	-	Total
CGE_1_D		Col. 9525	Character  1
		d Taking care of [sample person] has caused my health to get worse.
	Freq	Value	Label
	158	1	True
	1079	2	False
	10	D	Don't Know
	30	R	Refused to Answer
	1277	-	Total
CGE_1_E		Col. 9526	Character  1
		e Care costs more than I can really afford.
	Freq	Value	Label
	273	1	True
	960	2	False
	10	D	Don't Know
	34	R	Refused to Answer
	1277	-	Total

CGE_2		Col. 9527	Character  1
		2 On a scale from 1 to 5, where 1 is not a strain at all and 5 is very much of a strain, how much of a physical strain would you say that caring for [sample person] is for you?
	Freq	Value	Label
	636	1	Not a strain at all
	207	2	(strain range)
	218	3	(strain range)
	83	4	(strain range)
	76	5	Very much of a strain
	23	D	Don't Know
	34	R	Refused to Answer
	1277	-	Total

CGE_3		Col. 9528	Character  1
		3 Using the scale from 1 to 5, where 1 is not at all stressful and 5 is very stressful, how emotionally stressful would you say that caring for [sample person] is for you?
	Freq	Value	Label
	521	1	Not at all stressful
	227	2	(stress range)
	233	3	(stress range)
	111	4	(stress range)
	131	5	Very stressful
	20	D	Don't Know
	34	R	Refused to Answer
	1277	-	Total

CGE_4		Col. 9529	Character  1
		4 Using the same scale from 1 to 5 where 1 is no hardship at all and 5 is a great deal of hardship, how much of a financial hardship would you say that caring for [sample person] is?
	Freq	Value	Label
	773	1	No hardship at all
	143	2	(hardship range)
	150	3	(hardship range)
	56	4	(hardship range)
	94	5	Great deal of hardship
	25	D	Don't Know
	36	R	Refused to Answer
	1277	-	Total

		5. Here are some statements about your energy level and the time it takes to do the things you have to do. How much does each statement describe you?
CGE_5_A		Col. 9530	Character  1
		a You are exhausted when you go to bed at night.
	Freq	Value	Label
	504	1	Not at all
	400	2	Somewhat
	168	3	Quite a lot
	154	4	Completely
	12	D	Don't Know
	36	R	Refused to Answer
	1274	-	Total
CGE_5_B		Col. 9531	Character  1
		b You have more things to do then you can handle.
	Freq	Value	Label
	637	1	Not at all
	328	2	Somewhat
	168	3	Quite a lot
	95	4	Completely
	11	D	Don't Know
	35	R	Refused to Answer
	1274	-	Total
CGE_5_C		Col. 9532	Character  1
		c You don't have time just for yourself.
	Freq	Value	Label
	596	1	Not at all
	361	2	Somewhat
	150	3	Quite a lot
	118	4	Completely
	14	D	Don't Know
	35	R	Refused to Answer
	1274	-	Total
CGE_5_D		Col. 9533	Character  1
		d You work hard as a caregiver but never seem to make any progress.
	Freq	Value	Label
	777	1	Not at all
	255	2	Somewhat
	100	3	Quite a lot
	92	4	Completely
	14	D	Don't Know
	36	R	Refused to Answer
	1274	-	Total

CGE_6		Col. 9534	Character  2
		6 On a scale from 1 to 10 where 1 is not much stress at all, and 10 is a great deal of stress, how much stress does it cause you to do all of the things you do to help [sample person]?
	Freq	Value	Label
	475	1	Not much stress at all
	152	2	(stress range)
	128	3	(stress range)
	67	4	(stress range)
	182	5	(stress range)
	51	6	(stress range)
	43	7	(stress range)
	55	8	(stress range)
	19	9	(stress range)
	52	10	Great deal of stress
	16	D	Don't Know
	34	R	Refused to Answer
	1274	-	Total

		7. Providing help to [sample person] has -
CGE_7_A		Col. 9536	Character  1
		a Made me feel good about myself.
	Freq	Value	Label
	45	1	Disagree a lot
	27	2	Disagree a little
	194	3	Neither agree or disagree
	289	4	Agree a little
	656	5	Agree a lot
	21	D	Don't Know
	39	R	Refused to Answer
	1271	-	Total
CGE_7_B		Col. 9537	Character  1
		b Enabled me to appreciate life more.
	Freq	Value	Label
	45	1	Disagree a lot
	34	2	Disagree a little
	210	3	Neither agree or disagree
	267	4	Agree a little
	648	5	Agree a lot
	27	D	Don't Know
	40	R	Refused to Answer
	1271	-	Total

		8. In the past week, on how many days did you personally have to deal with the following behavior of [sample person]? How many days did [he/she]:
CGE_8_A		Col. 9538	Character  1
		a Keep you up at night
	Freq	Value	Label
	987	1	No days
	109	2	1-2 days
	46	3	3-4 days
	83	4	5 or more days
	12	D	Don't Know
	34	R	Refused to Answer
	1271	-	Total
CGE_8_B		Col. 9539	Character  1
		b Repeat questions/stories
	Freq	Value	Label
	724	1	No days
	193	2	1-2 days
	86	3	3-4 days
	216	4	5 or more days
	16	D	Don't Know
	35	R	Refused to Answer
	1270	-	Total
CGE_8_C		Col. 9540	Character  1
		c Try to dress the wrong way
	Freq	Value	Label
	1067	1	No days
	91	2	1-2 days
	26	3	3-4 days
	36	4	5 or more days
	17	D	Don't Know
	33	R	Refused to Answer
	1270	-	Total
CGE_8_D		Col. 9541	Character  1
		d Have a bowel or bladder accident
	Freq	Value	Label
	963	1	No days
	126	2	1-2 days
	46	3	3-4 days
	82	4	5 or more days
	19	D	Don't Know
	34	R	Refused to Answer
	1270	-	Total
CGE_8_E		Col. 9542	Character  1
		e Hide belongings and forget about them
	Freq	Value	Label
	1028	1	No days
	93	2	1-2 days
	33	3	3-4 days
	66	4	5 or more days
	17	D	Don't Know
	33	R	Refused to Answer
	1270	-	Total
CGE_8_F		Col. 9543	Character  1
		f Cry easily
	Freq	Value	Label
	1050	1	No days
	96	2	1-2 days
	36	3	3-4 days
	39	4	5 or more days
	16	D	Don't Know
	33	R	Refused to Answer
	1270	-	Total
CGE_8_G		Col. 9544	Character  1
		g Act depressed or downhearted
	Freq	Value	Label
	791	1	No days
	261	2	1-2 days
	86	3	3-4 days
	81	4	5 or more days
	16	D	Don't Know
	34	R	Refused to Answer
	1269	-	Total
CGE_8B_H		Col. 9545	Character  1
		h In the past week, how many days did [sample person]: Cling to you or follow you around
	Freq	Value	Label
	1018	1	No days
	89	2	1-2 days
	37	3	3-4 days
	83	4	5 or more days
	11	D	Don't Know
	31	R	Refused to Answer
	1269	-	Total
CGE_8B_I		Col. 9546	Character  1
		i Become restless or agitated
	Freq	Value	Label
	852	1	No days
	217	2	1-2 days
	70	3	3-4 days
	84	4	5 or more days
	13	D	Don't Know
	33	R	Refused to Answer
	1269	-	Total
CGE_8B_J		Col. 9547	Character  1
		j Become irritable or angry
	Freq	Value	Label
	878	1	No days
	226	2	1-2 days
	55	3	3-4 days
	64	4	5 or more days
	13	D	Don't Know
	33	R	Refused to Answer
	1269	-	Total
CGE_8B_K		Col. 9548	Character  1
		k Swear or use foul language
	Freq	Value	Label
	1107	1	No days
	68	2	1-2 days
	18	3	3-4 days
	31	4	5 or more days
	12	D	Don't Know
	33	R	Refused to Answer
	1269	-	Total
CGE_8B_L		Col. 9549	Character  1
		l Become suspicious, or believe someone is going to harm [him/her]
	Freq	Value	Label
	1104	1	No days
	68	2	1-2 days
	23	3	3-4 days
	29	4	5 or more days
	12	D	Don't Know
	33	R	Refused to Answer
	1269	-	Total
CGE_8B_M		Col. 9550	Character  1
		m Threaten people
	Freq	Value	Label
	1183	1	No days
	28	2	1-2 days
	8	3	3-4 days
	6	4	5 or more days
	12	D	Don't Know
	32	R	Refused to Answer
	1269	-	Total
CGE_8B_N		Col. 9551	Character  1
		n Show sexual behavior or interest at the wrong time/place
	Freq	Value	Label
	1196	1	No days
	19	2	1-2 days
	4	3	3-4 days
	4	4	5 or more days
	13	D	Don't Know
	33	R	Refused to Answer
	1269	-	Total
CGE_8B_O		Col. 9552	Character  1
		o Destroy or damage property
	Freq	Value	Label
	1205	1	No days
	15	2	1-2 days
	1	3	3-4 days
	4	4	5 or more days
	12	D	Don't Know
	32	R	Refused to Answer
	1269	-	Total

CGE_9		Col. 9553	Character  1
		9 Do you feel that other relatives are doing their fair share of caregiving for [sample person]?
	Freq	Value	Label
	634	1	Yes
	274	2	No
	191	N	Don't have other relative/does not apply
	9	D	Don't Know
	32	R	Refused to Answer
	1140	-	Total

CGE_10		Col. 9554	Character  1
		10 To what extent has there been any family conflict over care-giving regarding [sample person]? Would you say there's been a lot of conflict, some conflict, or none at all?
	Freq	Value	Label
	717	1	Not at all
	137	2	Some conflict
	56	3	A lot of conflict
	4	D	Don't Know
	35	R	Refused to Answer
	949	-	Total

		Family members may differ among themselves in the way they deal with a relative who is ill. Thinking of all your relatives, how much disagreement have you had with anyone in your family because of the following issues? How much disagreement have you had with anyone in your family because they:
CGE_11_A		Col. 9555	Character  1
		a Don't spend enough time with [sample person]?
	Freq	Value	Label
	852	1	No disagreement
	110	2	Just a little disagreement
	88	3	Some disagreement
	44	4	Quite a bit of disagreement
	12	D	Don't Know
	34	R	Refused to Answer
	1140	-	Total
CGE_11_B		Col. 9556	Character  1
		b Don't do their share in caring for [sample person]?
	Freq	Value	Label
	879	1	No disagreement
	91	2	Just a little disagreement
	75	3	Some disagreement
	49	4	Quite a bit of disagreement
	12	D	Don't Know
	34	R	Refused to Answer
	1140	-	Total
CGE_11_C		Col. 9557	Character  1
		c Don't show enough respect for [sample person]?
	Freq	Value	Label
	956	1	No disagreement
	55	2	Just a little disagreement
	43	3	Some disagreement
	40	4	Quite a bit of disagreement
	12	D	Don't Know
	34	R	Refused to Answer
	1140	-	Total
CGE_11_D		Col. 9558	Character  1
		d Lack patience with [sample person]?
	Freq	Value	Label
	907	1	No disagreement
	86	2	Just a little disagreement
	65	3	Some disagreement
	34	4	Quite a bit of disagreement
	14	D	Don't Know
	34	R	Refused to Answer
	1140	-	Total

		12. I've just asked you how your relatives act toward [sample person]. Now I'd like to ask how they act toward you, the caregiver. Again, thinking of all your relatives, how much disagreement have you had with anyone in your family because of the following issues? How much disagreement have you had with any one in your family because they:
CGE_12_A		Col. 9559	Character  1
		a Don't visit or telephone you enough:
	Freq	Value	Label
	905	1	No disagreement
	87	2	Just a little disagreement
	60	3	Some disagreement
	41	4	Quite a bit of disagreement
	13	D	Don't Know
	34	R	Refused to Answer
	1140	-	Total
CGE_12_B		Col. 9560	Character  1
		b Don't give you enough help?
	Freq	Value	Label
	888	1	No disagreement
	82	2	Just a little disagreement
	63	3	Some disagreement
	60	4	Quite a bit of disagreement
	13	D	Don't Know
	34	R	Refused to Answer
	1140	-	Total
CGE_12_C		Col. 9561	Character  1
		c Don't show enough appreciation of your work as a caregiver?
	Freq	Value	Label
	916	1	No disagreement
	63	2	Just a little disagreement
	62	3	Some disagreement
	52	4	Quite a bit of disagreement
	13	D	Don't Know
	34	R	Refused to Answer
	1140	-	Total
CGE_12_D		Col. 9562	Character  1
		d Give you unwanted advice?
	Freq	Value	Label
	908	1	No disagreement
	87	2	Just a little disagreement
	54	3	Some disagreement
	44	4	Quite a bit of disagreement
	13	D	Don't Know
	34	R	Refused to Answer
	1140	-	Total

		13. Let's turn now to the help and support you get from your friends and relatives. Thinking about your friends and family, other than [sample person], please indicate the extent to which you agree or disagree with the following statements:
CGE_13_A		Col. 9563	Character  1
		a There is really no one who understands what you are going through.
	Freq	Value	Label
	428	1	Strongly disagree
	365	2	Disagree
	180	3	Agree
	95	4	Strongly agree
	1	N	N
	1	`	No Data Available
	31	D	Don't Know
	36	R	Refused to Answer
	1137	-	Total
CGE_13_B		Col. 9564	Character  1
		b The people close to you let you know that they care about you.
	Freq	Value	Label
	101	1	Strongly disagree
	89	2	Disagree
	512	3	Agree
	367	4	Strongly agree
	31	D	Don't Know
	37	R	Refused to Answer
	1137	-	Total
CGE_13_C		Col. 9565	Character  1
		c You have a friend or relative in whose opinion you have confidence.
	Freq	Value	Label
	104	1	Strongly disagree
	91	2	Disagree
	517	3	Agree
	356	4	Strongly agree
	1	N	N
	30	D	Don't Know
	38	R	Refused to Answer
	1137	-	Total
CGE_13_D		Col. 9566	Character  1
		d You have someone whom you feel you can trust.
	Freq	Value	Label
	89	1	Strongly disagree
	63	2	Disagree
	525	3	Agree
	395	4	Strongly agree
	26	D	Don't Know
	39	R	Refused to Answer
	1137	-	Total
CGE_13_E		Col. 9567	Character  1
		e You have people around you who help you to keep your spirits up.
	Freq	Value	Label
	93	1	Strongly disagree
	89	2	Disagree
	541	3	Agree
	349	4	Strongly agree
	27	D	Don't Know
	38	R	Refused to Answer
	1137	-	Total
CGE_13_F		Col. 9568	Character  1
		f There are people in your life who make you feel good about yourself.
	Freq	Value	Label
	88	1	Strongly disagree
	64	2	Disagree
	555	3	Agree
	366	4	Strongly agree
	27	D	Don't Know
	37	R	Refused to Answer
	1137	-	Total
CGE_13_G		Col. 9569	Character  1
		g You have at least one friend or relative you can really confide in.
	Freq	Value	Label
	96	1	Strongly disagree
	62	2	Disagree
	510	3	Agree
	404	4	Strongly agree
	26	D	Don't Know
	39	R	Refused to Answer
	1137	-	Total
CGE_13_H		Col. 9570	Character  1
		h You have at least one friend or relative you want to be with when you are feeling down or discouraged.
	Freq	Value	Label
	109	1	Strongly disagree
	112	2	Disagree
	507	3	Agree
	342	4	Strongly agree
	1	5	Not allowed in CAPI but present in dataset
	28	D	Don't Know
	38	R	Refused to Answer
	1137	-	Total

		Here are some things that some people do when they are under stress from caregiving. How often do you do them?
CGE_14_A		Col. 9571	Character  1
		a Spend time alone.
	Freq	Value	Label
	493	1	Never
	470	2	Once in a while
	158	3	Fairly often
	68	4	Very often
	27	D	Don't Know
	47	R	Refused to Answer
	1263	-	Total
CGE_14_B		Col. 9572	Character  1
		b Eat
	Freq	Value	Label
	686	1	Never
	267	2	Once in a while
	153	3	Fairly often
	81	4	Very often
	29	D	Don't Know
	47	R	Refused to Answer
	1263	-	Total
CGE_14_C		Col. 9573	Character  1
		c Take some medications to calm yourself
	Freq	Value	Label
	1014	1	Never
	105	2	Once in a while
	37	3	Fairly often
	32	4	Very often
	28	D	Don't Know
	47	R	Refused to Answer
	1263	-	Total
CGE_14_D		Col. 9574	Character  1
		d Drink some alcohol
	Freq	Value	Label
	1066	1	Never
	95	2	Once in a while
	25	3	Fairly often
	3	4	Very often
	27	D	Don't Know
	47	R	Refused to Answer
	1263	-	Total
CGE_14_E		Col. 9575	Character  1
		e Prayer/Meditation spirits up.
	Freq	Value	Label
	341	1	Never
	297	2	Once in a while
	199	3	Fairly often
	350	4	Very often
	28	D	Don't Know
	48	R	Refused to Answer
	1263	-	Total
CGE_14_F		Col. 9576	Character  1
		f Talk with friends or relatives
	Freq	Value	Label
	293	1	Never
	354	2	Once in a while
	319	3	Fairly often
	223	4	Very often
	27	D	Don't Know
	47	R	Refused to Answer
	1263	-	Total
CGE_14_G		Col. 9577	Character  1
		g Spend time on exercise or hobbies
	Freq	Value	Label
	558	1	Never
	336	2	Once in a while
	205	3	Fairly often
	88	4	Very often
	28	D	Don't Know
	48	R	Refused to Answer
	1263	-	Total
CGE_14_H		Col. 9578	Character  1
		h Smoke
	Freq	Value	Label
	1024	1	Never
	54	2	Once in a while
	48	3	Fairly often
	62	4	Very often
	27	D	Don't Know
	48	R	Refused to Answer
	1263	-	Total
CGE_14_I		Col. 9579	Character  1
		i Watch TV
	Freq	Value	Label
	361	1	Never
	400	2	Once in a while
	298	3	Fairly often
	129	4	Very often
	27	D	Don't Know
	48	R	Refused to Answer
	1263	-	Total
CGE_14_J		Col. 9580	Character  1
		j Read
	Freq	Value	Label
	409	1	Never
	380	2	Once in a while
	273	3	Fairly often
	126	4	Very often
	27	D	Don't Know
	48	R	Refused to Answer
	1263	-	Total
CGE_14_K		Col. 9581	Character  1
		k Get help from a counselor or other professional
	Freq	Value	Label
	1097	1	Never
	68	2	Once in a while
	17	3	Fairly often
	7	4	Very often
	26	D	Don't Know
	48	R	Refused to Answer
	1263	-	Total
CGE_14_L		Col. 9582	Character  1
		l Other - Code CGE_14_L and explain in CGE_14_S below.
	Freq	Value	Label
	491	1	Never
	37	2	Once in a while
	16	3	Fairly often
	17	4	Very often
	22	D	Don't Know
	34	R	Refused to Answer
	617	-	Total
CGE_14_S		Col. 9583	Character  30
	Freq	Value	Label
	566	-	Verbatim Responses, Not Recoded
	17	D	Don't Know
	35	R	Refused to Answer
	618	-	Total

		15. There may be or may have been other ways in which providing care to [sample person] affects your life. As a caregiver, have you had:
CGE_15_A		Col. 9613	Character  1
		a Less time for other family members than before?
	Freq	Value	Label
	432	1	Yes
	775	2	No
	18	D	Don't Know
	36	R	Refused to Answer
	1261	-	Total
CGE_15_B		Col. 9614	Character  1
		b To give up vacations, hobbies, or your own activities?
	Freq	Value	Label
	501	1	Yes
	706	2	No
	18	D	Don't Know
	36	R	Refused to Answer
	1261	-	Total

END_CGE		Col. 9615	Character  4
		Set End Time
	Freq	Value	Label
	1274	-	Time: HHMM
CUML_CGE		Col. 9619	Character  4
		Subtract CGE start time from CGE end time
	Freq	Value	Label
	1272	-	Time: HHMM