BURDEN OF FAMILY CAREGIVERS OF CANCER PATIENTS IN PALLIATIVE CARE

Vale, Jamil Michel Miranda do; Santana, Mary Elizabeth de; Lima, Vera Lúcia de Azevedo; Parente, Andressa Tavares; Sonobe, Helena Megumi; Ferreira, Ilma Pastana

doi:10.1590/ce.v28i0.92970

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ORIGINAL ARTICLE • Cogitare Enferm. 28 • 2023 • https://doi.org/10.1590/ce.v28i0.92970 copy

BURDEN OF FAMILY CAREGIVERS OF CANCER PATIENTS IN PALLIATIVE CARE^* * Article extracted from the master’s “Cartilha ‘Aprendendo Melhor a Cuidar de Si’ para o Autocuidado do Cuidador de Adoecidos pelo Câncer”, Universidade Federal do Pará, Belém, PA, Brasil, 2021.

Authorship SCIMAGO INSTITUTIONS RANKINGS

HIGHLIGHTS

Most of the main caregivers are women.
Caregivers have health problems.
Moderate to severe overload.
Some illnesses increase the caregiver’s burden.

ABSTRACT

Objective:

To analyze the correlation between the burden of family caregivers of cancer patients in Palliative Care and the variables gender, age, health problems, and length of care.

Method:

Descriptive correlational study with a non-probabilistic sample of 147 family caregivers at the Oncological Palliative Care Clinic in 2021 in Belém do Pará - Brazil. The Zarit Overload Scale was used to collect data, with descriptive and inferential statistical analysis.

Results:

86 (58.5%) of the caregivers were female, 66 (44.9%) caregivers felt “Very overloaded”, and 104 (70.7%) had Moderate to Severe overload. There was no consistency in concluding that the variables gender, age group, health problems, or length of care had a statistically significant relationship (p>0.05).

Conclusion:

It is hoped that the results will contribute to increasing knowledge of the subject, supporting care practice, and formulating public policies to meet the needs of caregivers of family members who are ill with cancer.

KEYWORDS:
Overload; Caregivers; Palliative Care; Oncology Nursing; Neoplasms.

Caregivers’ health	n	%	p-Value
Do you have any health problems?
Yes	84	57.1	0.099ns
No	63	42.9
Shoulder Pain
No	89	60.5	0.013^*
Yes	58	39.5
Coastal Pain
Yes	76	51.7	0.741ns
No	71	48.3
Systemic Arterial Hypertension
No	131	89.1	0.000^*
Yes	16	10.9
Hernias
No	145	98.6	0.000^*
Yes	2	1.4
Claustrophobia
No	146	99.3	0.000^*
Yes	1	0.7
Gastritis
No	146	99.3	0.000^*
Yes	1	0.7
Depression
No	146	99.3	0.000^*
Yes	1	0.7
Asthma
No	145	98.6	0.000^*
Yes	2	1.4
Diabetes
No	139	94.6	0.000^*
Yes	8	5.4
HIV positive
No	146	99.3	0.000^*
Yes	1	0.7
Vogt-Koyanagi-Harada syndrome
No	146	99.3	0.000^*
Yes	1	0.7
Polycystic ovary
No	146	99.3	0.000^*
Yes	1	0.7
Osteoporosis
No	146	99.3	0.000^*
Yes	1	0.7

ZBI items		Answers					P-Value
ZBI items		N^* * N: Never; QN: Rarely, AV: Sometimes; F: Often, QS: Almost Always	QN^* * N: Never; QN: Rarely, AV: Sometimes; F: Often, QS: Almost Always	AV^* * N: Never; QN: Rarely, AV: Sometimes; F: Often, QS: Almost Always	F^* * N: Never; QN: Rarely, AV: Sometimes; F: Often, QS: Almost Always	QS^* * N: Never; QN: Rarely, AV: Sometimes; F: Often, QS: Almost Always
1. Do you feel your family member asks for more help than he/she needs?	n	123	20	1	1	2	0.000^* * N: Never; QN: Rarely, AV: Sometimes; F: Often, QS: Almost Always
	%	83.7	13.6	0.7	0.7	1.4
2. Do you feel you don’t have enough time for yourself because of your time with your family members?	n	4	16	87	34	6	0.000^* * N: Never; QN: Rarely, AV: Sometimes; F: Often, QS: Almost Always
	%	2.7	10.9	59.2	23.1	4.1
3. Do you feel stressed between caring for your family member and your other responsibilities with family and work?	n	11	11	72	52	1	0.000^* * N: Never; QN: Rarely, AV: Sometimes; F: Often, QS: Almost Always
	%	7.5	7.5	49.0	35.4	0.7
4. Do you feel ashamed of your family member’s behavior?	n	70	69	6	2	0	0.000^* * N: Never; QN: Rarely, AV: Sometimes; F: Often, QS: Almost Always
4. Do you feel ashamed of your family member’s behavior?	%	47.6	46.9	4.1	1.4	0.0
5. Do you feel irritated when your family member is around?	n	64	41	41	1	0	0.000^* * N: Never; QN: Rarely, AV: Sometimes; F: Often, QS: Almost Always
5. Do you feel irritated when your family member is around?	%	43.5	27.9	27.9	0.7	0.0
6. Do you feel your family member negatively affects your relationships with other family members or friends?	n	43	45	57	2	0	0.000^* * N: Never; QN: Rarely, AV: Sometimes; F: Often, QS: Almost Always
	%	29.3	30.6	38.8	1.4	0.0
7. Do you fear for your family member’s future?	n	3	3	35	61	45	0.000^* * N: Never; QN: Rarely, AV: Sometimes; F: Often, QS: Almost Always
7. Do you fear for your family member’s future?	%	2.0	2.0	23.8	41.5	30.6
8. Do you feel that your family member depends on you?	n	0	5	47	65	30	0.000^* * N: Never; QN: Rarely, AV: Sometimes; F: Often, QS: Almost Always
8. Do you feel that your family member depends on you?	%	0.0	3.4	32.0	44.2	20.4
9. Do you feel tense when your family member is around?	n	24	27	59	35	2	0.000^* * N: Never; QN: Rarely, AV: Sometimes; F: Often, QS: Almost Always
9. Do you feel tense when your family member is around?	%	16.3	18.4	40.1	23.8	1.4
10. Do you feel your health has been affected by your involvement with your relative?	n	4	9	33	78	23	0.000^* * N: Never; QN: Rarely, AV: Sometimes; F: Often, QS: Almost Always
	%	2.7	6.1	22.4	53.1	15.6
11. Do you feel you don’t have as much privacy as you would like because of your family member?	n	5	16	51	68	7	0.000^* * N: Never; QN: Rarely, AV: Sometimes; F: Often, QS: Almost Always
	%	3.4	10.9	34.7	46.3	4.8
12. Do you feel that your social life has been impaired because you care for your family member?	n	4	10	35	66	32	0.000^* * N: Never; QN: Rarely, AV: Sometimes; F: Often, QS: Almost Always
	%	2.7	6.8	23.8	44.9	21.8
13. Do you feel uncomfortable having visitors at home because of your family member?	n	32	44	66	5	0	0.000^* * N: Never; QN: Rarely, AV: Sometimes; F: Often, QS: Almost Always
	%	21.8	29.9	44.9	3.4	0.0
14. Do you feel that your family member expects you to care for him/her as if you were the only person he/she could depend on?	n	5	5	38	73	26	0.000^* * N: Never; QN: Rarely, AV: Sometimes; F: Often, QS: Almost Always
	%	3.4	3.4	25.9	49.7	17.7
15. Do you feel you don’t have enough money to care for your family members on top of your other expenses?	n	1	2	1	6	137	0.000^* * N: Never; QN: Rarely, AV: Sometimes; F: Often, QS: Almost Always
	%	0.7	1.4	0.7	4.1	93.2
16. Do you feel you cannot look after your family member for much longer?	n	12	19	61	49	6	0.000^* * N: Never; QN: Rarely, AV: Sometimes; F: Often, QS: Almost Always
	%	8.2	12.9	41.5	33.3	4.1
17. Have you lost control of your life since your family member’s illness?	n	25	35	53	34	0	0.000^* * N: Never; QN: Rarely, AV: Sometimes; F: Often, QS: Almost Always
	%	17.0	23.8	36.1	23.1	0.0
18. Would you like to let someone else take care of your family member simply?	n	29	28	52	38	0	0.000^* * N: Never; QN: Rarely, AV: Sometimes; F: Often, QS: Almost Always
	%	19.7	19.0	35.4	25.9	0.0
19. Do you feel uncertain about what to do for your family member?	n	1	13	39	85	9	0.000^* * N: Never; QN: Rarely, AV: Sometimes; F: Often, QS: Almost Always
	%	0.7	8.8	26.5	57.8	6.1
20. Do you feel you should do more for your family member?	n	20	8	36	78	5	0.000^* * N: Never; QN: Rarely, AV: Sometimes; F: Often, QS: Almost Always
20. Do you feel you should do more for your family member?	%	13.6	5.4	24.5	53.1	3.4
21. Could you take better care of your family member?	n	8	4	35	95	5	0.000^* * N: Never; QN: Rarely, AV: Sometimes; F: Often, QS: Almost Always
21. Could you take better care of your family member?	%	5.4	2.7	23.8	64.6	3.4
22. how burdened do you feel caring for your family member?	n	3	9	64	66	5	0.000^* * N: Never; QN: Rarely, AV: Sometimes; F: Often, QS: Almost Always
22. how burdened do you feel caring for your family member?	%	2.0	6.1	43.5	44.9	3.4

Variable		ZBI score		P-Value
Variable		Average	DP	P-Value
Sex	Female	46.2	9.3	0.496ns
Sex	Male	45.1	10.4	0.496ns
Age group	18 a 27	46.9	12.2	0.330ns
	28 a 37	44.5	10.1
	38 a 47	43.7	8.9
	48 a 57	48.3	7.6
	58 a 67	46.4	10.0
Do you have any health problems?	No	45.3	10.7	0.642ns
Do you have any health problems?	Yes	46.1	9.1	0.642ns
How many hours do you provide care?	More than 10 hours	46.2	8.8	0.637ns
How many hours do you provide care?	Full-time	45.4	10.4	0.637ns

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[1] Corresponding author: Jamil Michel Miranda do Vale, Universidade Federal do Pará, Augusto Corrêa, 01, E-mail: jamilvale@yahoo.com

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BURDEN OF FAMILY CAREGIVERS OF CANCER PATIENTS IN PALLIATIVE CARE* * Article extracted from the master’s “Cartilha ‘Aprendendo Melhor a Cuidar de Si’ para o Autocuidado do Cuidador de Adoecidos pelo Câncer”, Universidade Federal do Pará, Belém, PA, Brasil, 2021.

HIGHLIGHTS

ABSTRACT

Objective:

Method:

Results:

Conclusion:

BURDEN OF FAMILY CAREGIVERS OF CANCER PATIENTS IN PALLIATIVE CARE^* * Article extracted from the master’s “Cartilha ‘Aprendendo Melhor a Cuidar de Si’ para o Autocuidado do Cuidador de Adoecidos pelo Câncer”, Universidade Federal do Pará, Belém, PA, Brasil, 2021.