International Psychogeriatrics: page 1 of 9 © International Psychogeriatric Association 2017 doi:10.1017/S1041610216002295

The influence of caregivers’ burden on the quality of life for caregivers of older adults with chronic illness in Nigeria ...........................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................

Joel Olayiwola Faronbi and Adenike Ayobola Olaogun Department of Nursing Science, College of Health Science, Obafemi Awolowo University, Ile-Ife, Nigeria

ABSTRACT

Background: This study investigated the impact of caregivers’ burden on health-related quality of life (HRQoL) among the caregivers of older adults, and tested the predictive effect of burden and sociodemographic factors on HRQoL. Methods: The study employed a cross-sectional design. Three hundred and twenty-five caregivers of older adults with chronic illness were purposively selected. Data were collected using the Zarit Burden Interview and Short Form (SF-36) Health Survey. Data were analyzed descriptively and inferentially. Results: Findings revealed that 59.1% of caregivers experienced severe burden. In measuring the HQRoL, respondents performed poorly in seven domains: Role limitation due to emotional problems (19.69 ± 9.46), Energy/fatigue (43.47 ± 16.46), Emotional well-being, (45.83 ± 13.93), Social functioning (49.09 ± 18.46), Role limitation due to physical function (43.33 ± 10.15), Physical functioning (43.6 ± 18.73), and General health (37.31 ± 12.09). Respondents, however, showed a higher score in the pain domain (56.77 ± 35.79). Furthermore, findings revealed a positive correlation between caregivers’ burden and General health (r = 0.342), Emotional well-being (r = 0.222), and Physical functioning (r = 0.083). Similarly, there is a negative correlation between caregivers’ burden and Social functioning (r = –0.618), Role limitation due to physical activities (r = 0.459), Role limitation due to emotional well-being (r = –0.530), and Energy/fatigue domains (r = –0.509). In addition, burden of caregiving (β = –3.142119, p = 0.000) and age (β = 0.612752, p = 0.011) are predictors of the quality of life of caregivers. Discussion: This study concluded that there is a high prevalence of caregivers’ burden resulting in poor HQRoL. In addition, burden and age are predictors of the quality of life of caregivers. Key words: burden, caregivers, chronic illness, quality of life, influence, Nigeria, older adults

Introduction The older adults represent 5.3% (8.8 million) of the Nigerian population (National Population Commission, 2015). Due to an aging population and greater longevity, the prevalence of chronic disease and multi-morbidity is rising (Cramm and Nieboer, 2013). More than 65% of Nigerian older adults have at least one chronic illness (Abdulraheem et al., 2011). The occurrence of chronic illness is associated with a decline in functional capacity making an individual frail and unable to perform personal care. People who suffer from chronic diseases, such as heart disease, stroke, diabetes, cancer, obesity, Correspondence should be addressed to: Joel Olayiwola Faronbi, Department of Nursing Science, College of Health Science, Obafemi Awolowo University, Ile-Ife, Nigeria. Phone: +2348033383018. Email: [email protected], [email protected]. Received 1 Jun 2016; revision requested 29 Jul 2016; revised version received 12 Oct 2016; accepted 18 Nov 2016.

and arthritis, experience limitations in function, health activity, and work and these often affect the quality of their lives as well as the lives of their families. About one-quarter of people with chronic conditions have one or more daily activity limitations (Anderson, 2004). The limitation may be worse among homebound individuals who often have a disproportionately high disease burden, significant functional limitations, and higher mortality rate (Cohen-Mansfield et al., 2010). In Africa, there are few or no nursing homes for the care of older adults. Traditionally, family members serve as caregivers who provide care and support (Lai and Thomson, 2011). Similarly, in Nigeria, the care of the older adult is dependent on a weakened, informal, and traditional family support system (Fajemilehin and Odebiyi, 2011). Family members assist the older adults who are ill in the performance of their activities

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J. O. Faronbi and A. A. Olaogun

of daily living (ADL) ranging from bathing, grooming, changing of position in bed, and running errands. Family members who care for the older adults experience burdens ranging from poor health, financial difficulties, social isolation, and psychological disturbances. Studies have shown that a caregiver’s burden is associated with negative impacts on physical, social, and psychological health (Morimoto et al., 2003). Caring for older adults not only affects caregivers’ daily lives, but also poses dramatic and considerable psychological and physical challenges (Yang et al., 2012). The severity of the caregiving burden may be related to the morbidity and comorbidity of the patient. Persons caring for a patient with more than one chronic illness will be more likely to suffer more consequences of caregiving than those caring for patients with just one chronic illness (Sherwood et al., 2005). Previous studies on the health-related quality of life (HRQoL) among the Nigerian population have focused on specific disease conditions of patients. They have explored HRQoL of patients with specific disease conditions, such as hypertension, heart failure, epilepsy, and sickle cell disease (Faronbi, 2015). None of these studies have focused on the HRQoL of caregivers of older adults with chronic illness in Nigeria. This study is the first of its kind among the Nigerian population. The aims of this study were to investigate the prevalence of caregivers’ burden and HRQoL among the caregivers of older adults and to test the predictive effect of burden and socio-demographic factors on HRQoL. Findings from this study can serve as a guide for policy-makers on policy formulation in the management of chronic illnesses and related complications. Finally, this study will serve as a resource for further studies on the care of the older adults, chronic illness among the geriatric population, and on the quality of life of caregivers. Conceptual model: stress process model The conceptual model for this study is derived from the Stress Process Model developed by Pearlin et al. (1990). The model is built on three fundamental concepts: stressors, the mediator, , and the stress outcomes. Stressors may include providing assistance with ADL and supervising the care receivers. It may also include financial and economic matters related to caregiving activities, such as payment for the upkeep of the older adults, hospital bills, and other financial matte. Stressors also include constraints and limitations imposed by the demands of caregiving, such as the inability to participate in social activity as well as the inability of the caregiver to combine their role as caregiver with

their own daily role (role conflict) with the resultant effect being an inability to attend to their own daily routine. Mediators are coping strategies employed to mitigate the caregiving process. These include culture, socio-economic status, family network, and personal history. Outcomes in this context include physical or psychological challenges ranging from body pain, poor sleep and poor health, role conflict, distress, and depression. All these may affect the HRQoL of the caregivers.

Methodology Design This is a cross-sectional study that employed a correlational design to examine the impact of burden on the HRQoL of caregivers of older adults with chronic illness in Osun State, Nigeria. Setting and participants The study was conducted in Osun State, Nigeria utilizing outpatient clinics and inpatients wards of Obafemi Awolowo University Teaching Hospitals Complex (OAUTHC), Ile-Ife, as well as the homes of the caregivers situated in towns and villages within the states. OAUTHC is a tertiary health facility situated in Osun State, Nigeria. It receives referrals from towns and villages within the South West, Nigeria, its catchment area. The hospital does not have a separate geriatric unit; older adults are attended to in the medical unit or department. Participants for this study were caregivers of older adults (aged 60 years and over) with chronic illness. Chronic diseases represented in this study were heart conditions, kidney diseases, cancer, gastrointestinal diseases, diabetes mellitus, stroke, and other neurological conditions, including dementia. In order to locate the caregivers, older adults with chronic illness attending care in the hospital were located and their informed consent to participate in the study was gained. The older adults were recruited from the list of all the older adults attending care in the hospital in the past five years and screened to determine their eligibility using the Katz Index of Independent Activities of Daily Living (Katz IADL) (Shelkey and Wallace, 2012). Older people with a substantial level of dependency were asked to identify their caregivers who were then invited to participate in the study. The caregivers were selected using a purposive sampling technique. Inclusion criteria were specified so that a caregiver eligible to participate in the study must be (1) at least 18

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Caregivers’ burden in Nigeria

years of age; (2) assisting the older adult with most ADL (caregiving tasks); (3) domiciled within Osun State; and (4) orientated to person, time, and space. The caregivers were followed up in their respective homes for data collection. The sample size was determined using the formula: n = t2 × p(1–p)/m2 . This formula has been used in previous studies to determine sample size: Titilola et al. (2013) and Dye et al. (1999). Viana et al. (2013) reported that 22–40% of the caregivers were experiencing various degrees of burden. Using p = 30%, t = 1.96, and m = 0.05, required calculated sample size was n = 322.72≈323. Caregivers were recruited consecutively, until the required sample was reached. At the end of the data collection period, 325 caregivers were enlisted for the study. Instruments The instruments employed for data collection were the Katz IADL, Zarit Burden Interview (ZBI), and Short Form (SF-36) Health Survey. The level of dependency of the older adult was assessed using the Katz IADL (Shelkey and Wallace, 2012). It is a six-item instrument that allows clients to be scored (with yes/no) on their ability to perform six basic functions, with responses corresponding to Dependence: (0 Points) with supervision, direction, personal assistance, or total care, and Independence: (1 Point) without supervision, direction, or personal assistance. The total score ranges from 0 to 6. A score of 6 indicates full function, 4 indicate moderate impairment, and 2 or less indicates severe functional impairment (Shelkey and Wallace, 2012). The ZBI developed by Zarit et al. (1986) is a structured interview schedule that measures the subjective burden of the primary caregiver. Caregivers were asked to respond to a series of 22 questions measuring psychosocial distress using a 5-point Likert scale with Never, Rarely, Sometimes, Often, and Always corresponding to scores of 0– 4, summed to give a total score ranging from 0 to 88 with zero being the minimum score and 88 the maximum score. Estimates of the degree of burden are classified as little burden (scores 0–20), mild burden (scores 21–40), moderate burden (scores 41–60), and severe burden (scores 61–88). HRQoL is measured using the SF-36 Health Survey (Ware, 2000). This survey consists of eight scales and 36 items. Each of the domains is summed up to 100 and the cut-off (in parenthesis) are given as follows: Physical functioning (84.2), Role limitations due to physical health (81.0), Role limitations due to emotional problems (81.3), energy/fatigue (60.9), Emotional well-being (74.7), Social functioning (83.3), Pain (75.2), and General

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health (72.2). Any score above the cut-off is considered good HRQoL, whereas any score below the cut-off is regarded as poor HRQoL. The validity and reliability of the original instruments have been established in previous studies. In addition, a pilot study was conducted in the Ladoke Akintola University of Technology Teaching Hospital, Osogbo utilizing caregivers of older adults with chronic illnesses. Sixteen selected older adults were asked to identify their caregivers who then participated in the study. The three instruments: Katz IADL, ZBI, and SF-36 Health Survey were administered on them and analyzed. This provided the opportunity to validate the instruments. All instruments were validated and yielded the following correlation coefficient (r): Katz IADL (0.70), ZBI (0.75), and SF-36 Health Survey (0.72). They were, therefore, deemed suitable for use in the current study. Ethical consideration Ethical approval for the study was obtained from the Human Research Ethics Committee, Institute of Public Health, Obafemi Awolowo University, Ile-Ife (IPHOAU/12/101) and the Ethics and Research Committee, OAUTHC, IleIfe (NHREC/27/02/2009a). Permission was also obtained from the authority of the institution and, in addition, informed consent was obtained from the older adults as well as their caregivers before the commencement of the study. Procedure and data collection Four research assistants who were resident indigene of the state were employed for data collection. They were trained and assessed for their proficiency on the procedure for data collection. The principal investigator had a regular debriefing with them to ensure that they are actually doing the right thing. The selected caregivers were informed about the purpose of the study, their informed consent was gained and they were administered the ZBI and SF-36 Health Survey. Caregivers who were literate were allowed to fill the questionnaire without any form of intimidation while the researcher and research assistants administered the instruments on the non-literate ones using the local language. Data analysis Data generated were analyzed using Stata (version 12). Statistical techniques employed include descriptive statistics (frequency and percentage). Pearson product moment correlation coefficients were calculated to assess the relationship between burden and domains of the HRQoL. All variables were examined for normality of distribution

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J. O. Faronbi and A. A. Olaogun

Table 1. Socio-demographic characteristics of the caregivers (n = 325) va r i a b l e

frequency

pe rc e n t

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Age 19–29 30–39 40–49 50–59 60 and above Sex Male Female Marital status Single Married Education No formal education Primary Secondary Tertiary Employment Civil servant Self employed Housewife Retiree Average level of income

The influence of caregivers' burden on the quality of life for caregivers of older adults with chronic illness in Nigeria.

This study investigated the impact of caregivers' burden on health-related quality of life (HRQoL) among the caregivers of older adults, and tested th...
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