alexa

GET THE APP

Quality of Life of Family Caregiver of Patients with Cancer
ISSN: 2165-7386

Journal of Palliative Care & Medicine
Open Access

Our Group organises 3000+ Global Conferenceseries Events every year across USA, Europe & Asia with support from 1000 more scientific Societies and Publishes 700+ Open Access Journals which contains over 50000 eminent personalities, reputed scientists as editorial board members.

Open Access Journals gaining more Readers and Citations
700 Journals and 15,000,000 Readers Each Journal is getting 25,000+ Readers

This Readership is 10 times more when compared to other Subscription Journals (Source: Google Analytics)
  • Research Article   
  • J Palliat Care Med 357, Vol 9(3)
  • DOI: 10.4172/2165-7386.1000357

Quality of Life of Family Caregiver of Patients with Cancer

Mehad Mohamed Ahmed Araki*
Tawam Hospital, SEHA, Al-Ain, United Arab Emirates
*Corresponding Author: Mehad Mohamed Ahmed Araki, Tawam Hospital, SEHA, Al-Ain, United Arab Emirates, Tel: +971508083355 , Email: [email protected]

Received Date: Apr 02, 2019 / Accepted Date: Apr 16, 2019 / Published Date: Apr 23, 2019

Abstract

Background: Cancer diagnosis has a significant impact not only on patients with cancer, but also on their Primary caregivers. Understanding the effects of cancer diagnosis on various aspects of the family caregivers’ QOL is significant because these variables are key components of their quality of life. This study intended to describe the impact of caring for patients with cancer on the quality of life among their primary caregivers.

Method: Quantitative non-experimental descriptive design was used. Study was conducted in the oncology inpatients units of Tawam Hospital in Al Ain. The tools used were demographic proforma for the caregiver and patients and Caregiver Quality of life – Cancer (CQOLC- standardized tool: validated after translation with permission). Totally 120 samples were selected by systematic random sampling method; every second caregiver
was included as per the criteria, followed by the informed consent from the patients and caregivers. The demographic profoma tools were also given to patients and caregivers to fill. When assistance was needed the researcher was available for them.

Result: Majority of caregivers (60%) belonged to 31-50 years of age and 60% of them were females. Most of the caregivers 74.2% were non-Emiratis, Muslims 82.5%, children of the patients 38%, Married 78.3%, studied high school 47%, employed 49.2% and 70% had financial support for the treatment of the patient. 2. Caregiver QOL: Majority of the caregivers (62.5%) had moderate QOL, 35% had good QOL, 3.5% had poor QOL, and none of the participant had excellent QOL. All Caregivers’ demographic variables showed significant difference with p value<.001. All Patients’ demographic variables also showed significant difference with p value<0.5.

Conclusion: Majority of family caregivers of patients with cancer had moderate QOL and there is a strong association between the caregiver QOL with their demographic variables and with the demographic variables of the patients.

Keywords: Family caregiver; Quality of life; Cancer

Introduction

Cancer is a major health problem of the world, and the diagnosis of cancer has a great impact on both patients and their family caregiver [1]. In the year 2000, cancer was responsible for 56 million (12%) death worldwide. According to the World Cancer Report, by the year of 2020, cancer diagnosis rate could increase by 50% to reach 15 million new cases in that year [2]. Cancer diagnosis in most of the time is sudden and requires active involvement by both patients and their family members. Treatment of cancer would require family members to assume the responsibility for providing care and support needed by the patients. Complex cancer treatment regimen necessitates active involvement of family members in the plan of care. This type of care is complex in nature and family members are often lack the skill, knowledge, and uncertain about their new roles and what type of care to provide for their loved ones. Family caregivers are involved in all the cancer journey, starting from the time of diagnosis, treatment phase, recurrence, progression, palliative care, and ends with end of life care [3].

Family caregivers of patients with cancer unconsciously tend to ne neglect their own quality of life by putting the patient's needs first. They report various problems from their care giving role that include physical health problems, psychological distress, conflict among their social roles, restriction of activities, and strain in marital and family relationship. These negative experience would negatively impact on the general well-being and the quality of life of those caregivers [4].

Moreover, providing care to these patients may have a negative social impact, as social roles and relationships are enormously affected by cancer. Caregivers have less time to spend with friends, neglect their usual activities and relationships as they are engaged in the care giving role; consequently their quality of life is affected from social aspect [5].

The financial impact of cancer also contribute to poor quality of life. Financial burden could be the result of having no insurance or inadequate coverage for the treatment, travelling to and from medical appointment, homecare, missing work, household adjustment, seeking alternative therapies such as herbal treatment and vitamins [5].

Purpose of the study

The purpose of conducting this study is to assess the quality of life experienced by families of patients with Cancer, explore factors that influence family caregivers’ quality of life, and determine which family caregivers are most at risk of having reduced quality of life.

Methodology

This chapter discusses the methodologies employed in the current study including characteristics of sample, population and setting. Also the instruments used in the study and the data collection procedure as well as human rights protection.

The present study adopted a descriptive design and the purpose of conducting this study was to assess the quality of life experienced by families of patients with Cancer, associate family caregivers’ quality of life with their selected demographic variables and with the demographic variables of the patients, and determine which family caregivers are most at risk of having reduced quality of life.

Research design

This study required a quantitative non-experimental descriptive design. This design was chosen since it is the most appropriate design to the nature of the study as it help in describing/obtaining information regarding variables of specific population. This design helped in observing, describing, and documenting aspects of phenomena (QOL of family caregiver of patient with cancer) as it occurs.

Setting of the study

The study was conducted in Tawam Hospital in Al Ain, which is a 466 bed tertiary structured hospital located in the Eastern region of Abu Dhabi. The hospital serves as national and regional referral center for oncology services neonatal care, and cardiac care. More precisely, the study took place in oncology unit (inpatient settings).

Population

The target population of the study was all family caregiver of patients with cancer who were hospitalized at Tawam hospital. The accessible population was all family caregiver of patients with cancer treated in adult oncology unit in Tawam Hospital during the data collection period.

Sample

Inclusion criteria: Being identified by the patient as the unpaid person (family member) most involved with their actual care. 18 years of age or older, able to understand and give consent for participation in the study. Family caregiver of a patient with either non metastatic (receiving curative treatment) or metastatic disease (receiving palliative treatment/palliative).

Exclusion criteria: Person with chronic physical and psychological health problems.

• Family caregiver not staying with the patient for not less than 12 hours per day.

Sample size and sampling technique

Probability sampling- systematic random sampling method was followed to select participants. In inpatient setting every second caregiver was recruited to the study.

The sample size was estimated based on the hospital records for in patients during the period of January-December 2014. The number of patients admitted during the year 2014 was 660, with monthly admission rate of 55-80 per month. The total sample size was estimated as 120 samples.

Instrument

Caregiver quality of life index – Cancer: The CQOLC is a 35 item instrument that uses a 5-point Likert scale to assess the QOL of family care giver of Patients with cancer, developed by Dr. Weitzner in 1999 [6]. The instrument is multidimensional with items measuring Physical functioning, emotional functioning, family functioning, and social functioning. It is ranged from 0 (not at all), 1 (a little bit), 2 (somewhat), 3 (quite a bit) and 4 very much. It include ten items relate to burden, seven to disruptiveness, seven to positive adaptation, three to financial concerns and eight single items to additional factors (disruption of sleep, satisfaction with sexual functioning, day to day focus, mental strain, informed about illness, protection of patient, management of patient’s pain and family interest in caregiving). The CQOLC scale is scored by adding up adding up the score on each item to yield a total score for the instrument. Score can range from 0-140. The highest score possible is 140, higher score means better quality of life.

Reliability (internal consistency) of the instrument with alpha coefficient was 0.9. Correlation coefficient of test re test reliability (administrations 2 weeks apart) was 0.94. Convergent validity of physical component summary score was .10 and mental component summary score was 0.69.

Dr. Michale Weitznere (author of the instrument) was contacted. Permission to use the instrument and translate it into Arabic language was given. Instrument was re tested for its reliability.

The tool was translated into Arabic by Tawam Hospital Medical translation Department. The backward translation of the instrument was done by Dr. Faiza; Associate Professor in RAK Medicine and Health Science University, College of Nursing.

The Arabic Tool was compared and checked against the English one by two oncologist, two psychologists, and two social workers. They were instructed to check the translation, look for any variation in the meaning between the two versions and to write their comments on a hard copy of the Arabic tool. Ethical approval was obtained from Tawam research committee prior start data collection.

Demographic Data Questionnaire (Family caregiver): Demographic Data Questionnaire was used to obtain data related to age, gender, marital status, nationality and religion, relation of the caregiver with the patient, level of education, occupation and financial support.

Demographic Data Questionnaire (Patients): This questionnaire was used to obtain data related to age, gender, marital status, nationality and religion, level of education, occupation, diagnosis, reason for hospitalization, and length of hospitalization.

Table 1 shows that 40% of the participants were males and 60% were females among the family caregivers. The religion wise distribution of family caregiver’s was as 82.5% of the respondents were Muslims, 13.3% were Christians and 4.3% were others (Hindus).

S. No Details of the Family Caregivers Frequency Percentage
  Age in years
1 20 or below 3 2.5
21-30 28 23.3
31-40 34 28.3
41 – 50 38 31.7
51-60 14 11.7
Above 60 3 2.5
2 Gender
Male 48 40
Female 72 60
3 Nationality
Emarati 31 25.8
Non-Emarati 89 74.2
4 Religion
Muslim 99 82.5
Christian 16 13.3
Other 5 4.2

Table 1: Demographic details of the family caregiver.

It is also showing that the majority of the samples were non Emarati 74.2% and only 25.8% were Emarati.

The marital status of the family caregivers shows that the majority of the respondents were married 78.3 %, 25% were, 2.5% were widows/ widowers and 0.8% were divorced as shown in Table 2.

S. No Details of the Family Caregivers Frequency Percentage
Marital Status
1 Single 22 18.3
Married 94 78.3
Widow/Widower 3 2.5
Divorced 1 0.8
2 Education
Illiterate 1 0.8
High School certificate 57 47.5
Diploma Degree 14 11.7
Baccalaureate Degree 39 32.5
Master Degree 9 7.5

Table 2: Represent the demographic details of the family caregiver.

With regards to educational level, the findings show that 0.8% of the respondents were illiterate, 47.5% had high school certificate, 11.7% had a diploma degree, 32.5% had a baccalaureate degree and remainder 7.5% had a master degree.

Table 3 shows the relationship of the caregiver with the patient: Results showed that 20% of the caregiver were daughters, 18.3% were sons, 25 were wives, 15% were husbands, 4.2% were mothers, 1.7% were fathers, 6.7% were sisters, 5.8% were brothers and 3.3 % of them were others (In laws).

Details of the Family Caregivers Frequency Percentage
Relationship with the patient
Daughter 24 20
Son 22 18
Wife 30 25
Husband 18 15
Mother 5 4.2
Father 2 1.7
Sister 8 6.7
Brother 7 5.8
Other 4 3.3

Table 3: Demographic details of the family caregiver-continued (n120)

Table 4 shows that 6.7% of the respondents were below 20, 5.8% were between 21-30; 15.8% were between 31-40; 16.7% were between 41-50; 30.8% were between 51-60 and 24.2% were above 60.

S. No Details of the Family Caregivers Frequency Percentage
1 Age in years    
 20 or below 8 6.7
 21-30 7 5.8
 31-40 19 15.8
41-50 20 16.7
 51-60 37 30.8
 Above 60 29 24.2
2 Gender
 Male 56 47.5
 Female 64 52.5
3 Nationality
 Emarati 20 30
 Non-Emarati 100 70
4 Religion
 Muslim 95 79.2
 Christian 20 16.7
 Other 5 4.2

Table 4: Demographic details of the patients. (n=120)

It also shows that 47.5% of the respondents were males and 52.5% were females. The majority of the respondent were Non -Emirati (70%) and the remainder 30% were Emirati. The table also shows that 79.2 % of the respondents were Muslims, 16.7% were Christians and 4.2% were others.

Table 5 represent the demographic details of the patients and the marital status of the patients ’ shows that the majority of the respondents 60.8% were married, 12.5% single, 18.3 % widows/ widowers and the remainder 8.3% were divorced.

S. No Details of the Family Caregivers Frequency Percentage
1 Marital Status    
Single 15 12.5
Married 73 60.8
Widow/Widower 22 18.3
Divorced 10 8.3
2 Education    
Illiterate 9 7.5
High School certificate 73 60.8
Diploma Degree 6 5
Baccalaureate Degree 28 23.3
Master Degree 2 1.7
PHD Degree 2 1.7

Table 5: Demographic details of the family caregiver.

With regards to educational level, the findings shows that the majority of the respondents 60.8% had high school certificate, 7.5% of the respondents were illiterate, 5.0% had a diploma degree, 23.2% had a baccalaureate degree, 1.7% had master’s degree and the remainder 1.7% had PHD.

Table 6 shows that 10% of the respondents had head and neck cancer, 6.6% had lung cancer, 30% had digestive tract and digestive organ cancer, 16.6% had breast cancer, 9.1% had female genital cancer and 8.3% had male genital cancer, 5.8% had renal cancer, 7.5% had bone/ muscle/soft tissue cancer, 0.8 has skin cancer and 5% had other type of cancer.

Details of the Family Caregivers Frequency Percentage
Diagnosis 12 10
Head and Neck 8 6.6
Lung Cancer 36 30
Digestive tract and Digestive organ Cancers 20 16.6
Breast Cancer 11 9.1
Female Genital 10 8.3
Male Genital 7 5.8
Renal Cancer 9 7.5
Bone/ Muscle/soft tissue Cancer 1 0.8
Skin Cancer 6 5

Table 6: Demographic details of the family caregiver.

Table 7 shows that 30% of the respondents had no metastatic diseases were the majority 70% had metastatic disease.

Details of the Family Caregivers Frequency Percentage
Presence of Metastasis
 Yes 86 70
 No 34 30

Table 7: Demographic details of the family caregiver.

The details of the quality of life of the family caregivers are presented as follow in Table 8.

In the QOL of family caregivers, majority of the caregiver 75 (62.5%) had moderate QOL, followed by good QOL 42 (35%) and poor QOL 3 (3.5%). None of the caregivers had excellent QOL.

S. No QOL Frequency Percentage
1 Excellent - -
2 Good 42 35
3 Moderate 75 62.5
4 Poor 3 3.5

Table 8: The overall QOL of the family caregivers of patients with cancer.

Table 9 shows area wise of QOL of the family caregivers of patients with cancer.

S.No Area wise QOL Maximum possible score Range Average
1 Burden 40 Dec-40 29.77
2 Distruptiveness 28 Jul-28 19.67
3 Positive Adaptation 28 0-21 10.74
4 Financial concerns 12 0-12 3.64
5 Total CQOLC ( Includes the above four aspects and general components) 140 39-106 75.22

Table 9: Area wise QOL of the family caregivers of patients with cancer.

The maximum possible score for CQOLC (Includes the four aspects and general components) was 140. In the current study, the highest obtained score was 106, and the lowest obtained score was 39.

Section IV: Association between the QOL and the demographic details of the family caregivers.

The association between the QOL and the demographic details of the family caregivers are presented in this section for testing the following hypothesis.

Age: The chi-square was significant, 0.406, p

Religion: The chi-square was significant, 0.586, pTable 10.

Discussion

In the present study, QOL of family caregivers, majority of them 75 (62.5%) had moderate QOL. In a study conducted by Grov et al. the physical QOL was significantly higher than norm in both genders, while mental QOL was significantly lower in male primary caregivers [7]. The level of anxiety was significantly higher than norm in both genders. They have concluded that the primary caregivers (PC) of both genders had significantly more anxiety than norm samples.

Chen et al. conducted a study aimed to examine the correlation between quality of life (QOL) in cancer patients and that of their spouse caregivers and to identify factors that influence this correlation [8]. The study revealed that the social/family and functional dimensions of patient QOL and total score for patient QOL were associated with each dimension of their caregivers' QOL and with the total score (r=0.27-0.44). Factors influencing the association between patients' and caregivers' overall QOL included cancer diagnosis, length of hospitalization, caregiving intensity and duration, marital satisfaction, and caregiving self-esteem.

Moreover, Heidari et al. found that depression has strong negative correlation with QOL and participants with depression were more likely to have a poorer overall QOL [9]. Depression has some effects on QOL of breast cancer patients ’ care givers. Assistance and giving information through education and intervention from healthcare professionals is the key of improve the ability of caregivers to enhance their QOL.

On the other hand, the caregiver’s age, gender and relationship with the patient were found to be significantly associated with their QOL, Similarly in another study conducted by Matthews found that male family caregivers of cancer patients in Singapore had more impaired QOL than their female peers in the domains of physical/practical concerns and self-needs [10]. This finding is in contrast to those of other studies that reported lower QOL among women due to their traditional gender role. In Singapore, as in many Asian societies, the responsibility of family caregiving traditionally falls on women, while men are expected to provide for the family. Thus, it seems that some men (i.e., sons or husbands) may experience additional role strain when they are forced to balance both the home and work spheres to care for a relative with cancer. Moreover, the present study the QOL of family caregiver and the patient’s variables namely age, gender and type of cancer were found to be significantly associated. A study conducted by Malathi and his colleagues to find the association between mean of QOL and study variables, used One-way ANOVA test to test the association between family caregivers QOL mean score and study variables such as age, gender, education, income, type and duration of illness [11]. Result shows that there is association between means Family caregivers score and income of the family (F=3.062, p=. 017), type of cancer (F=2.781, p=.027), duration of illness (F=4.745, p=.003). Thus research hypothesis was accepted for income, type of cancer and duration of illness. They revealed that social and functional aspects of patients' QOL play a significant role in determining the QOL of their spouse caregivers. The strength of association between patients' and spouse caregivers' overall QOL can be moderated by some factors.

Limitations

This study was limited to specific time period, conducted at a single clinical site, using primary caregiver sample that were collected only from inpatient setting. Data from outpatients setting should also have been collected. However, this study represents the first attempt in UAE to assess QOL of cancer caregivers. Future studies should include larger samples from different emirates in UAE. In addition, preexisting depression, anxiety, QOL, and burden may have had an influence on the findings. There are neither similar studies nor interventional studies in this area, but it is expected that these findings and recommendations provide an incentive to work on this area.

Conclusion and Recommendation

In summary, this study aimed to assess the quality of life of family caregiver of patients with cancer. According to the results of this study, majority of caregiver belonged to 41-50 years of age and 60% of them were females. Most of them were non-Emiratis, Muslims, children of the patients. Married, studied high school, employed and had financial support for the treatment of the patient. Caregiver QOL: Majority of them 75 (62.5%) had moderate QOL, 35% had good QOL, and none of the participant had excellent QOL. The study also showed that and there is a strong association between the caregiver QOL and their demographic variable and the demographic variables of the patients.

Based on the findings from this research, several areas were identified in need for future research. Future studies need to identify patients and caregivers who are at higher risk for poorer outcomes, so that interventions can be targeted to them. Although all caregivers should be provided with basic caregiving information as part of comprehensive cancer care program, every effort should be made to identify those families at greater risk who are likely to benefit from additional intervention.

Future studies with larger samples would provide greater insights on the complexity of the interrelationships among factors affecting quality of life and health of family caregivers. In addition, longitudinal studies would also further our understanding of family caregivers’ situations at different time points. The researchers could also compare family caregiver’s burden in taking care of patients that had more ADL dependency in order to further explore the relationship between patients ’ ADL dependency and the family caregiver ’ s burden. Meanwhile, future research should take into consideration the length of care-giving experience.

The current study emphasized that quality of life evaluation is fundamental elements process of providing high quality of care. As a result, nursing education curriculum should therefore be enhanced to develop curriculum about the importance of performing Quality of Life Assessment (QOLA) for caregiver of patients with cancer and implementing appropriate interventions accordingly.

With regard to patient and family education, given the poor QOL of caregiver ’ s experience, this study highlights the need for nursecaregiver communication and education. There is a critical need to develop and implement interventions to support the caregiving role for caregivers of patients with cancer. Most importantly, healthcare professionals, including oncology nurses, need to ensure that caregivers receive the appropriate resources and support to care for their loved ones at home.

Also there is a need for well-funded, multi-sites studies to obtain large samples of patients and caregivers in a reasonable amount of time with a greater ability to generalize findings. Conducting intervention studies with Patients with cancer and their family caregivers is challenging and requires the support of clinicians, who can inform potential participants about available studies and encourage them to participate. These studies also need to be integrated into clinical care to determine how effectively they can be implemented in practice settings.

Future research needs to further explore the concepts related to negative and positive outcomes of caregiving. Expanding the understanding of caregiving’s impact and related factors in cancer caregiver populations would enable nurses to develop innovative interventions to decrease negative outcomes and improve positive outcomes of caregiving for patients with cancer.

References

Citation: Araki MMA (2019) Quality of Life of Family Caregiver of Patients with Cancer. J Palliat Care Med 9:357. DOI: 10.4172/2165-7386.1000357

Copyright: © 2019 Araki MMA. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use,  distribution, and reproduction in any medium, provided the original author and source are credited.

Top