Burden on family caregivers of the elderly in oncologic palliative care Original Article
Corresponding Author:
Gabriela Rezende, University of Sao Paulo, Rua Garibaldi, 880, ap.111, Centro, 14010- 170, Ribeirão Preto – São Paulo, Brazil.
Email: gabirezende31@gmail.com
Gabriela Rezende MSc1, Cristiane A. Gomes MSc1, Fernanda C. Rugno MSc2, Gail Eva PhD3, Nereida K.C. Lima PhD4, Marysia M. R. P. De Carlo PhD5
(1) Occupational therapist, master of Health Sciences by the Nursing in Public Health Program of the Nursing School of Ribeirao Preto – University of Sao Paulo, Brazil.
(2) Occupational therapist, doctoral student of the Nursing in Public Health Program of the Nusing School of Ribeirao Preto – University of São Paulo, Brazil.
(3) Senior Lecturer at Brunel University London, UK
(4) Professor of the Department of Internal Medicine, Division of General Clinical Medicine and Geriatrics, Ribeirao Preto Medical School, University of São Paulo, Brazil.
(5) Professor of the Occupational Therapy Course, Department of Neurosciences and Behavioral Sciences of Ribeirao Preto Medical School , University of São Paulo, Brazil.
Abstract
Objective: To identify the perception of burden of caregivers of elderly patients in oncologic palliative care. Methods: A cross-sectional survey with an exploratory non- probabilistic, quantitative methodology conducted on a sample of 100 subjects stratified according to the score obtained by applying the Karnofsky Performance Scale (KPS) to the elderly in oncologic palliative care. Group 1 - 25 family caregivers of elderly subjects with a KPS score below 40%; Group 2 - 25 caregivers of elderly subjects in oncologic palliative care with KPS scores of 70%, 60% or 50%; Control Group - 50 family caregivers of elderly subjects in oncologic palliative care with a KPS score of 80% or more. A clinical and sociodemographic questionnaire and the following protocols were applied: Brazil Economic Classification Criteria and the Caregiver Burden Scale. For data analysis, descriptive statistics and group comparisons by Fisher's exact test and a Regression Quantiles Model were used. Data were analyzed using the SAS 9.0 and Stata version 13 software. Results: Family caregivers are mostly middle-aged to older women, daughters or wives predominantly in the 56-71 age group, poorly educated, belonging to social class C and performing no remunerated activity. The largest burden rates were seen in female caregivers and caregivers of seniors who have lower functional capacity scores.
Conclusions: The aggravation of the disease, the functional decline of the elderly and the possibility of death increase the burden, indicating the need to offer support services to this population as early as possible.
Keywords: Caregiver Burden, Caregivers, Aged, Palliative Care, Oncology, End-of-life Care.
1. Background
Chronic disease rates have increased considerably as a result of aging of the global population, with the elderly population being the most susceptible. Among chronic diseases, cancer is responsible for the major causes of death worldwide, causing a high socioeconomic impact and requiring treatment of high complexity [1].
The growing numbers of the elderly population often lead to the increase of physical, emotional and social incapacities and reduced performance, resulting in the need for constant care by a caregiver [2]. As a consequence, care tasks may cause a burden that can result in caregiver suffering and loss of health [3,4].
The caregiver burden tends to be further aggravated when the elderly subject has a severe and advanced chronic disease and approaches the end of life [5].
Palliative care appears as a necessary form of intervention in the healthcare field [6].
A support model for personlized care is being developed in the field of geriatric palliative care to satisfy the needs of the vulnerable and severely ill frail elderly population [7].
Research has been focused on the needs of caregivers in general, the effects of care and support interventions that can assist them in their tasks. Some studies published in the international literature have evaluated the family burden of people in palliative care using several measuring instruments to identify which areas of family life are most affected and the factors associated with burden [8-12].
However, few articles have reported the experience of caregivers of elderly people in palliative care at different stages of oncologic diseases leading to the decline of the elderly's functional status. Further studies are essential for the understanding of the interventions that can reduce the burden and suffering of caregivers. An investigation of this topic would bring important benefits for the sick, the family caregivers and the health
care system.
This, the aim of this study was to identify and analyze the perception of burden on the part of caregivers of elderly patients in oncologic palliative care.
2. Methods
This was a cross-sectional exploratory survey using quantitative non-probabilistic methodology (convenience sampling), whose researched element is selected for being available at the local and moment of the gathering (MARCONI; LAKATOS, 2008). The subjects were family caregivers of elderly patients in oncologic palliative care, with no compromise on the central nervous system and without a dementia state, which could result in cognitive compromisse, selected during an outpatient visit to the Chemotherapy Center, Geriatric Oncology Clinic, Group of Palliative Care, or during hospitalization on the Geriatrics and Oncology wards in a large high-complexity university teaching hospital.
Through verifying the records of the patient in palliative care and according to the inclusion and exclusion criteria previously established, their caregivers were approached and invited to participate in this study, during the period from May to September 2015.
The family caregivers included were those considered to be the most involved and responsible for the tasks of caring for the elderly (60 years or older) in oncologic palliative care. Subjects of both sexes, aged 18 years or more and conscious, no comorbidity and cognitively oriented were included in the study. A total of 100 family caregivers agreed to participate.
The caregivers were divided into three groups according to the functional performance of the elderly, measured by the Karnofsky Performance Status (KPS) protocol, with a 100-10 score, with 80 to 100 scores meaning that the individual has the ability to
perform daily activities and work without the need for specific care. Scores of 50-70 suggest incapacity to work, although the person is able to stay at home and satisfy most personal needs with a varying amount of assistance needed. Scores below 40 indicate inability for self-care and the need for institutional or hospital care, with rapid disease progression [13].
The KPS is widely referred in literature and used in palliative care services, since it allows the classifying and stratification of patients, whose clinical conditions are complex, according to the level of functional compromise presented; it represents the capacity for performing activities of daily life, for performing working activities and the need of receiving special care [13-14].
Thus, the family caregivers of the elderly in oncology palliative care were stratified into the following groups: Group 1 (G1), 25 family caregivers of elderly with KPS below 40%; Group 2 (G2) 25 caregivers of elderly with KPS of 70%, 60% or 50%; and Control Group (CG) of 50 family caregivers of elderly with KPS of 80% or more.
During data collection, a clinical and sociodemographic questionnaire was applied in addition to the KPS, together with the protocols Brazil Economic Classification Criteria (BECC) and the Caregiver Burden Scale (CBScale). The CBScale, consisting of 22 questions, has been validated for Brazilian Portuguese, The questions are divided into 5 groups: General strain; Isolation; Disappointment; Emotional involvement; and Environment. The responses are given on a Likert scale ranging from 1 to 4.
The study was approved by the Ethics Committee of Ribeirão Preto College of Nursing, University of São Paulo and by the Ethics Committee of University Hospital, Ribeirão Preto Medical School, University of São Paulo, under protocol no. CAAE 39104314.5.0000.5393, on February 11, 2015.
2.1. Analysis
Means (standard deviation) and median (minimum, maximum values) were calculated to describe the sociodemographic and clinical data and the scores of the CBScale. Group comparisons involving qualitative variables (sociodemographic and clinical data) were made using Fisher's exact test. The associations of caregiver bond and gender with with patient gender and the interaction with the caregiver age range were also determined. A Regression Quantiles Model was proposed to compare the groups regarding the domains of the questionnaire [15].
The G1, G2 and CG groups were homogeneous regarding gender, age, education and BECC, with no significant difference between them (p>0.05). The analyses were performed using the SAS 9.0 and Stata version 13 software, with the level of significance set at 5%.
3. Results
The characterization of the caregiver sample showed that 68% were women in all groups, predominantly (37%) aged 56 to 71 years. The predominant marital status was married, and most had children.
Most caregivers had a low educational level (48% in G1, 52% in G2, and 46% in CG) and the Catholic religion was prevalent in all groups. Regarding occupation, 42% did not perform any gainful activity and 33% were retired. According to the BECC, the sample mainly consisted of people belonging to the lower economic classes (64%). The results are presented in Table 1.
Table A1
For a better understanding of the relationship between the caregivers and the sick elderly patients and their care tasks, the family bond between them was identified. All caregivers live with the elderly and, in the three groups studied, most have the bond of children of the elderly (52%). Caregivers perform their care tasks full time, mostly for 24 hours per day (63%). Only in the G1 (56,0%) there was a predominance of those who received assistance from other family members. The remaining caregivers stated that they did not receive such support.
The person receiving care in the three groups were mainly elderly men (57%). The most prevalent types of cancers diagnosed according to ICD-10 (International Diseases Classification) [16] involved the digestive organs (39%). The time since diagnosis was predominantly less 6 months in all groups (42%).
There was a predominance of palliative chemotherapy in G2 (76%) and CG (90%).
G1 mainly consisted of elderly patients receiving no type of chemotherapy (64%). None of the patients in the three groups are followed or treated by any specific palliative care service (88.0%). The results are shown in Table 2.
Table A2
3.1. Caregiver burden assessment – CBS scale
When analyzing the medians obtained with the CBS scale, G1 - which had the lowest KPS scores – showed the highest burden score among the three groups with the greatest difference from CG.
The domains with higher burden rates in G1 were Isolation, General Strain, Environment, Disappointment, and Emotional involvement, with a total median value of 2.0. In G2, the higher burden rates were General strain, Disappointment, Isolation, Environment and Emotional involvement in this order, with the the overall median for this domain being 1.9. Finally, the burden rates for the CG were Environment, Disappointment, General Strain, Isolation and Emotional involvement, with a median value of 1.4. The lowest burden was observed for the Emotional Involvement domain in all three groups, as shown in Table 3.
Table A3
Group comparison using the total medians for each domain revealed a statistically significant difference between G1 and CG (0.80, <0.01) and between G2 and CG (0.02) with the difference estimated at 0.46, thus demonstrating a higher burden among caregivers belonging to the Study Groups. Furthermore, it was also shown that females generally exhibited a higher burden compared to males (0.04), with an estimated statistical difference of -040 and a confidence interval between -0.76 and -0 03. Regarding general strain, groups caring for patients with a KPS score below 70% presented a higher burden than those caring for patients with a KPS score above 80%. Burden rates in the Isolation (p <0.01), Disappointment (p = 0.03) and Environment (p = 0.01) domains were signficantly higher for caregivers of patients with a KPS score below 40% (G1) compared to the group caring for patients with a KPS score above 80% (CG).
Comparison of the total means of each domain between groups revealed that the highest burden was among caregivers assisting groups with lower KPS scores (below 70%).
Thus, according to the present results, the lower the KPS of the elderly, the higher the caregiver burden.
4. Discussion
The results of the present investigation regarding the characteristics of caregivers are similar to those reported by Guedes and Pereira who investigated the burden, coping, physical symptoms and psychological morbidity of 50 family caregivers providing care for functionally dependent elderly subjects [17]. The bond between caregiver and elderly patient was mostly that of children, followed by spouses.
The present data agree with those reported in other studies, indicating that most family caregivers are women, who historically have a family caregiving function, especially wives [2,6,18,19].
The present results indicate that most caregivers belonged to the lower economic classes, and had low educational levels. The educational level of a primary or secondary caregiver has a direct influence on the assistance provided [19].
The lack of financial resources as one of the main difficulties in taking care of ill family members. Family financial difficulties – taken together with the low educational level of caregivers, lack of knowledge and preparation for care – interfere with obtaining the resources necessary for the maintenance of the sick elderly patients, negatively impacting the care provided, as well as the caregiver’s health [20].
These changes may result in professional consequences, such as reduction of the family budget, greater responsibility for the family member who represents the family breadwinner, and marital conflict, emotional and physical burden on the caregiver [21].
Most of the elderly patients studied here are not accompanied by a service or
palliative care team. This represents a serious public health problem due to the lack of specific palliative care services and late referral preventing the benefits the patients could achieve.
Early indication and more frequent assistance by palliative care services can significantly improve care at the end of life, underscoring the need to increase the availability of palliative care services [22].
Thus, it is necessary to include effective palliative care in public policies and health services, creating new services and better covering. Strengthening existing services and sharing research and scientific publications on this issue can give greater visibility to such practices and improve the quality of life for the sick and their families.
4.1. Burden assessment
It was observed that caregivers assisting elderly groups with lower functional performance (KPS of 70% to 10%) had a higher burden than of caregivers assisting patients with higher functional performance (KPS above 80%). With the evolution of the disease and the functional decline of the elderly in palliative care, the caregivers face a greater burden. These results corroborate the findings of Grunfeld et al who ascertained that, as functional decline of patients with breast cancer increased, there was an increase in depression and burden perceived by caregivers [23].
In addition, caregivers assisting people in palliative care who require greater assistance to perform daily life activities due to their decline in functional performance, face a higher risk of having a heavy burden [24].
The increased burden on caregivers assisting people in palliative care may be related to the greater assistance required by the patient for daily life activities and to the proximity
of death. The burden is increased by the difficulty of providing care to the sick person and by the more active role that the caregiver takes during the more advanced stage of the illness, considering that ill persons gradually lose autonomy in their daily lives [23-25]. The burden is further increased by the restriction of the tasks of private and domestic life of the caregiver [26-29].
In addition, high burden levels were observed in caregivers of people with functional performance scoring below 70% with the KPS instrument.
When analyzing the domains of the instrument, it was observed that elderly people with KPS scores below 40% require continuous care on the part of their caregivers, who have higher burden rates, particularly in the fields of Isolation, followed by General strain and Environment. In the group of caregivers of elderly patients with an intermediate KPS score (70% to 50%), General strain, Disappointment and Isolation were the domains showing the highest burden rates. No previous studies with similar results for these groups have detected that in an extensive literature review.
This study has shown that females have higher burden rates in the areas of Isolation (p <0.01) and Emotional involvement (p <0.01), and also carry, in general, a higher burden compared to males (p = 0.04). Other studies with providers of palliative care have reported that women have higher burden levels [30-31].
Finally, caregivers need more support and information from health professionals, which will benefit both the sick person, the carers and the staff who assist them, with knowledge of the experiences and needs of the family and of the patient as the basis to develop interventions and specific services aimed at this population.
5. Conclusion
It the present study, the highest burden rates were observed for female caregivers and caregivers of elderly patients with lower levels of functional capacity. The worse the disease progression and the increase of functional elderly decline, the greater the burden levels for the caregivers. Thus, the family members who assume the role of caregiver of the elderly with advanced disease and no cure possibilities have a higher risk of burden and thereby a worse quality of life.
Among the limitations of the current study is the use of only one tool to assess the burden. Longitudinal rather than cross-sectional studies should be conducted in order to monitor these caregivers during the illness and mourning phase.
Despite an extensive literature search, we did not detect any study investigating the burden on caregivers of elderly in oncologic palliative care using standardized tools that could justify or support the findings
It is noteworthy that this study makes an important contribution in terms of public health, considering that the results contribute to a better understanding of the burden involved in the task of caring for the life and health of caregivers. These results are also expected to contribute to the creation and expansion of the number of services and trained professionals for the care as early as possible and to the development of public policies.
Author contributions
Details of the contributors: 1. Conception and design (GR, MMRPDC); 2. Acquisition, statistical analysis and interpretation of the data (GR, CAG, FCR, MMRPDC); 3. Drafting or revising the manuscript critically for important intellectual content (GR, NKCL,GE, MMRPDC); and 4. Final approval of the version to be submitted (GR, CAG, FCR, NKCL,GE, MMRPDC). GR is the guarantor.
Disclosure of interest
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Acknowledgements
The authors received financial support from Coordination for the Improvement of Higher Education Personnel (CAPES) – Brazil.
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Tables:
A.1: Table 1 - Characterization of the sample of caregivers, according to gender, age, marital status, religion, educational level, professional activity, and economic class
G1 G2 CG
Total(%)
Variables Categories N (%) N (%) N (%)
Gender Female 13 (52,0%) 18 (72,0%) 37 (74,0%) 68
Male 12 (48,0%) 7 (28,0%) 13 (26,0%) 32
Age Group 24-39 5 (20,0%) 6 (24,0%) 12 (24,0%) 23
40-55 10 (40,0%) 8 (32,0%) 11 (22,0%) 29 56-71 8 (32,0%) 10 (40,0%) 19 (38,0%) 37
72+ 2 (8,0%) 1 (4,0%) 8 (16,0%) 11
Marital Status
Married 20 (80,0%) 24 (96,0%) 36 (72,0%) 80
Divorced 3 (12,0%) 1 (4,0%) 5 (10,0%) 9
Single 1 (4,0%) 0 (0,0%) 7 (14,0%) 8
Widowed 1 (4,0%) 0 (0,0%) 2 (4,0%) 3
Children Yes 21 (84%) 20 (80,0%) 36 (72,0%) 77
No 4 (16%) 5 (20,0%) 14 (28,0%) 23
Educational Level
No study +Elementary
school 12 (48,0%) 13 (52,0%) 23 (46,0%) 48 High education 8 (32,0%) 7 (28,0%) 18 (36,0%) 33 Higher education 5 (20,0%) 5 (20,0%)
9 (18,0%)
19
Religion
Catholic 14 (56,0%) 18 (72,0%) 34 (68,0%) 66 Protestant 7 (28,0%) 5 (20,0%) 9 (18,0%) 21
Others 4 (16,0%) 1 (4,0%) 6 (12,0%) 11
No religion 0 (0,0%) 1 (4,0%) 1 (2,0%) 2
Professional Activity
Retired but active 0 (0,0%) 0 (0,0%) 1 (2,0%) 1 Retired no active
10 (40,0%) 6 (24,0%) 16 (32,0%) 32 Active 9 (36,0%) 12 (48,0%) 20 (40,0%) 41 No active 6 (24,0%) 7 (28,0%) 13 (26,0%) 26
Economic Class A 2 (8,0%) 0 (0,0%) 3 (6,0%) 5
B 8 (32,0%) 10 (40,0%) 13 (26,0%) 31
C 9 (36,0%) 10 (40,0%) 25 (50%) 44
D-E 6 (24,0%) 5 (20,0%) 9 (18,0%) 20
Bonding with the
elderly Partner 9 (36,0%) 9 (36,0%)
18 (36,0%)
36 Children 15 (60,0%) 11 (44,0%) 26 (52,0%) 52
Other 1 (4,0%) 5 (20,0%) 6 (12,0%) 12
Hours per day spent in caring
24 hours 19 (76,0%) 17 (68,0%) 27 (54,0%) 63 Up to 12 hours 6 (24,0%) 8 (32,0%) 14 (28,0%) 28 Up to 6 hours 0 (0,0%) 0 (0,0%) 9 (18,0%) 9 Receives help (family,
friends)
Yes 14 (56,0%) 10 (40,0%) 13 (26,0%) 37
No 11 (44,0%) 15 (60,0%) 37 (74,0%) 63
A.2:
Table 2 - Characterization of the diagnosis and treatment of the elderly.
G1 G2 CG Total
(%)
Variables Categories N (%) N (%) N (%)
Gender Male 13 (52,0%) 13 (52,0%) 31(62,0%) 57
43 Female 12 (48,0%) 12 (48,0%) 19 (38,0%)
Diagnosis
C15-C261 4 (16,0%) 9 (36,0%) 26 (52,0%) 39
C30-C392 6 (24,0%) 6 (24,0%) 8 (16,0%) 20
C60-C633 4 (16,0%) 1 (4,0%) 5 (10,0%) 10
C00-C144 3 (12,0%) 3 (12,0%) 3 (6,0%) 9
Others 8 (32,0%) 6 (24,0) 8 (16,0%) 22
Time since diagnosis
Until 6 months 10 (40,0%) 11 (44,0%) 21 (42,0%) 42 7 months – 1 year 5 (20,0%) 3 (12,0%) 8 (16,0%) 16 1 year – 2 years 3 (12,0%) 5 (20,0%) 9 (18,0%) 17 More than 2 years 7 (28,0%) 6 (24,0%) 12 (24,0%) 25
Chemotherapy protocol
Palliative 9 (36,0%) 19 (76,0%) 45 (90,0%) 73
Other 0 (0,0%) 0 (0,0%) 1 (2,0%) 1
Not done 16 (64,0%) 6 (24,0%) 4 (8,0%) 26
Monitoring by a palliative care service
Yes 8 (32,0%) 1 (4,0%) 3 (6,0%) 12
No 17 (68,0%) 24 (96,0%) 47 (94,0%) 88
1ICD-10: Malignant neoplasms of digestive organs; 2ICD-10: Malignant neoplasms of respiratory and intrathoracic organs; 3ICD-10: Malignant neoplasms of male genital organs;
4ICD-10: Malignant neoplasms of lips, oral cavity and pharynx.
A.3:
Table 3 Differences between groups estimated with the CBScale burden instrument in the fields General Strain, Isolation, Disappointment, Emotional Involvement, and Environment, and total mean for Group 1, Group 2 and Control Group.
Variable Comparison Estimated
difference
Confidence interval (95%)
P value(*)
G1 – CG 0,89 0,23 1,55 <0,01
General Strain G2 – CG 0,75 0,16 1,34 0,01
G1 – G2 0,14 -0,52 0,81 0,67
G1 – CG 1,86 1,30 2,42 <0,01
Isolation G2 – CG 0,51 0,01 1,01 0,04
G1 – G2 1,35 0,79 1,92 <0,01
G1 – CG 0,64 0,08 1,20 0,03
Disappointment G2 – CG 0,25 -0,25 0,75 0,32
G1 – G2 0,39 -0,17 0,95 0,17
Emotional Involvement G1 – CG 0,32 -0,16 0,80 0,18
G2 – CG 0,04 -0,39 0,46 0,86
G1 – G2 0,29 -0,19 0,77 0,24
G1 – CG 0,86 0,30 1,42 <0,01
Enviroment G2 – CG 0,49 -0,01 1,00 0,05
G1 – G2 0,37 -0,20 0,93 0,20
G1 – CG 0,80 0,35 1,24 <0,01
Total Mean G2 – CG 0,46 0,07 0,86 0,02
G1 – G2 0,33 -0,11 0,78 0,14
(*) p <0.05 revealed a statistically significant difference
