Veronika DUCI Elona DHMBO

A SOCIAL POLICY APPROACH TO QUALITY OF LIFE: THE CASE OF CANCER CAREGIVERS IN ALBANIA

Introduction

openhagen criteria refer to the rules that a country should implement in order to be eligible for joining the European Union. According to these criteria, a state should have the institutions to preserve democratic governance and human rights, have a functioning market economy, and accepts the obligations and intent of the EU. In Chapter 19, regarding social policy and employment, acquis in the social field includes minimum standards in the areas of labour legislation, equality, health and safety at work, and anti-discrimination. The Member Sta tes participate in social dialogue at European le vel and in the EU policy processes in the areas of em ployment policy, social inclusion and social protection. Who are the caregivers? According to the Policy Framework to Support Californias Family Caregivers, family car-

Authors are holders of MSc and PhD and lecturers at the Faculty of Social Sciences, Department of Social Work and Social Policy, University of Tirana

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egivers include unpaid friends, relatives, spouses, partners, and/or neighbours who are involved in caregiving for an adult who needs help with every day tasks to function. Caregiving may include accessing, arranging and coordinating hands-on personal care, emotional and financial support, ma naging medical care and other care, transportation, shopping, cleaning, and decision making about health, financial, personal, and legal matters. This care may be full - or part-time and may be shared between family caregivers. Participation in the Labour Market in long-term caregivers In a study of Gabriele, Tanda & Tediosi (2011), which used the Eurostat ECHP dataset 1994-2001 for Netherlands, Belgium, Italy and Spain, and in which were included questions specifically aimed to investigate whether people suffer caregiving constraints, it resulted that: The heaviest burdens characterized by higher informal-care intensity and co-habitation with the assisted person hamper the caregiver from participating in the labour market as desired. The probability to incur constraints increases by 0.9% for each additional hour of care-giving, starting from 15 hours of care. Providing care to adults who are not living in the same place reduces this probability by about 3%. Among workers, those in part-time jobs have a 17% higher probability of suffering constraints. Among those not working, housewives seem to perceive stronger constraints than the unemployed. Furthermore, for those providing care to both children and adults, the probability to be constrained is 15% higher. These results show a general picture which assumes different characteristics in different countries (Gabriele, Tanda and Tediosi, 2011). Caregivers quality of life Satisfaction of social needs derived from the framework of human and social rights is expressed in particular definitions about quality of life. Quality of life may be defined in terms of four interdependent spheres: individual, collective, institutional and subjective. From the perspective of a rights approach, guaranteeing an effective response to social needs in quality of life and health is critical to the means of management in defence of rights. This engenders the funding, management, and training conditions for workers, for example, as well as the information system, logistics, and infrastructure necessary for responding to the social needs derived from human and social rights (De Negri, 2004, p.27).

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Aim and objectives of the study The aim of this paper is to explore the quality of life of cancer caregivers in Albania, based on a social policy approach. The objectives that derive from this purpose are: to measure the perceived quality of life in cancer caregivers; and to identify caregiving effects to the labour market participation and monthly family income. Research questions The research questions of this study are as follows: 1. How is the quality of life perceived by cancer caregivers? 2. Does caregiving hamper individuals from participating in the labour market? What effects does this have? Literature review Quality of life is a complex concept. Subjectivity is characteristic of quality of life. Quality of life may be defined in terms of five interdependent spheres: 1. The individual sphere is understood as autonomy or functional independence that is, the socio-economic capacity to provide for ones needs and the full exercise of political emancipation; 2. The collective sphere represents equity among groups and the construction of public democratic spaces; 3. The institutional sphere involves the demand for institutional democratization, a comprehensive response to social needs, and the resulting inter-sectoriality in the building of responses that should have an effect on the determinants of quality of life and health problems in order to result in the social production of quality of life; 4. The environmental sphere emphasizes the principle of sustainability; and 5. The subjective sphere, extensive and enveloping, focuses on adopting new forms of subjectivation toward the construction of new social visions, as well as the consolidation of values such as solidarity, justice, and respect for differences (De Negri, 2004, p.27). Another approach to quality of life brings globalization, human rights and human development index to consideration. Human rights are affected by the internationalization of the Universal Declaration of Human Rights and Democratization of different states. On the other hand, the Human Development Index is influenced from the Standard of Living (like GDP per capita), life expectancy and knowledge (education and literacy). The third

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component, globalization, relates to the increasing connections among the worlds citizens. All of the above components have their impact in the perceived quality of life. Facts about informal caregivers In a recent study (Anderson et al, 2009) it has been noted that in the EU27 about 3% of people state that they care for an elderly or disabled relative several times a week, 4% do it once or twice a week, and 8% do it less than once a week. Altogether, a quarter of the people surveyed report involvement in care for an elderly or disabled relative. Higher rates were reported in the 3 candidate countries (Bulgaria, Romania and Turkey) of 7%, 6% and 6% respectively (Anderson et al, 2009). It was estimated that in 2005, in the EU countries, there were around 19 million carers over the age of 25 (Grammenos, 2005). Of these, 9.6 million were caring for at least 35 hours per week. It was also estimated that the numbers of carers would increase by 30% by 2030. Economic data about the carers The estimated value of caregiving in six EU member states exceeds public expenditure on formal care and care allowances (Rothgang et al, 2006); In England, the value of the care provided by family carers is estimated to exceed the budget of the National Health Services for the whole UK (Yeandle & Buckner, 2007) Most Americans have provided care to an ill or disabled loved one or know someone who has. In fact: An estimated 44.4 million Americans provide care for adult family members and friends who, because of disabling illnesses or conditions, have limited ability to carry out daily activities such as bathing, managing medications or preparing meals. Informal caregivers provide 37.1 billion hours of care each year in the United States. 78% of adults receiving long-term care at home rely exclusively on family and friends to provide assistance. 70% of people with Alzheimers disease live at home, where families provide at least 75% of their care. What is the Burden of Caregiving? Various studies have measured the impact of caregiving on daily life. Researchers have found that:

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Family caregivers face a range of health risks and serious illnesses themselves. Family caregivers experience high rates of depression, stress and other mental health problems. Elderly spousal caregivers experiencing mental or emotional strain have a 63% higher risk of dying than non-caregivers. The long-term effects of caregiving on womens economic wellbeing are profound: It is found that caregiving for a parent substantially increased womens risks of living in poverty and receiving public assistance in later life. 67% of family caregivers report conflicts between caregiving and employment, resulting in reduced work hours or unpaid leave. Informal caregivers personally lose about $659,139 over a lifetime: $25,494 in Social Security benefits; $67,202 in pension benefits; and $566,443 in forgone wages. Family caregivers spend an average of $5,531 a year on caregiving expenses, including household goods, food, transportation, medical co-payments, prescription drugs, and medical equipment and supplies. Cancer caregiving and quality of life Longer survival, increasing incidence, and a growing trend toward outpatient treatment have made family caregivers increasingly important in providing support for and managing the care of patients with cancer (Given, Given & Kozachik, 2001). Providing care for long periods at home can impose considerable demands and cause stress that dramatically can affect family caregivers quality of life (QOL). QOL is a complex and multifaceted concept that is studied widely by social scientists, psychologists, and healthcare professionals. Conceptualizations of QOL have objective and subjective aspects (Day & Jankey, 1996). Objective aspects include physical functioning and economic factors, such as income and housing. Subjective aspects include attitudes, feelings of well-being, and the ability to achieve personal goals. QOL defined as a multidimensional concept can be assessed by using a number of criteria that typically consist of as many as five domains: physical, psychological, social, economic, and spiritual well-being (Ferrans, 2000). Definitions of QOL have been based primarily on research with people who are ill. However, healthcare professionals know that assuming caregiving responsibility greatly influences the QOL of family caregivers,

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particularly as cancer care shifts from inpatient to outpatient. The QOL of family caregivers of patients with cancer is important. Extending the conceptualization of QOL to caregivers requires considering domains specific to them. Economic functioning is an additional aspect to consider because a primary role of the family is to provide financially for its members (Wietzner, Meyers, Steinbruecker, Saleeba, & Sandifer, 1997). Nevertheless, to date, few researchers have explored QOL issues of family caregivers of patients with cancer caregivers. Methods This study was conducted in the Oncology Hospital, which is located in the University Hospital Center Mother Teresa in Tirana. Although oncologic services are not provided only by the hospital, the vast majority of cancer patients in Albania are treated in this hospital. Sample This study is based in a convenient sample. An important issue for the selection of the sample for this study was that of defining the status of caregivers. Before becaming part of the study, and filling the questionnaire participants had to answer yes to the following question: Are you the primary caregiver for this patient? If the answer to this question was yes then the participants had to meet the below inclusion criteria. Inclusion criteria. Caregivers in this study had to be at least 18 years old and bear the main responsibility of offering direct care to a patient with cancer for at least one hour per day. They should also be unpaid caregivers, like family members, relatives or friends. Only one person for a patient could have the status of primary caregiver, so for one patient there was only one caregiver hence, participant. Finally, the last criterion was the time of caregiving: it had to be at least one month. The sample size was calculated based on the confidence level (95%), and for a N = 20.000 due to the fact that the real number of cancer caregivers is not known. So, the final sample size identified was n = 377 participants. Quality of Life Scale Quality of Life Scale is comprised of 16 items, while the previous versions had 15 items (Flanagan, 1982). This instrument is categorized according to the sum of the answers, in order to conclude in a final result.

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Participants should be encouraged to fill all the answers. Non answered items can be replaced with the mean value for this item. Flanagan did not report internal consistency reliability (Cronbachs alpha) estimates in his instrument development work. The quality of life was divided in three levels: from 0-45 points (Low Quality of Life); 46-74 points (Medium Quality of Life); and 75-105 points (High Quality of Life). Results Participants in this study were of different age groups and genders. About 18.3 % of them were between 16 and 25, 21.2 % were 26 to 35, 20.2% were 36 to 45, 18% were between 46 and 55, 17.8% were 56 to 66, and only 4.5% were 66 and more. From the n = 377 participants 69% of them were females while only 31% were male caregivers. Table 1. Employment status
Frequency Percent Valid Percent Cumulative Percent Valid Employed Unemployed Total 141 236 377 37.4 62.6 100.0 37.4 62.6 100.0 37.4 100.0

Table 1 presents the employment status of the cancer caregivers. Only 37.4% of them were employed, while the rest of them were unemployed (62.6%). Table 2. Monthly family income of caregivers (in albanian lek)
Frequency Percent Valid >30000 lek 30000 60000 lek 60000-90000 lek 90000-120000 lek 120000-150000 lek 150000 and more Total 182 142 24 10 6 13 377 48.3 37.7 6.4 2.7 1.6 3.4 100.0 Valid Percent 48.3 37.7 6.4 2.7 1.6 3.4 100.0 Cumulative Percent 48.3 85.9 92.3 95.0 96.6 100.0

In Table 2 results show the economic status of cancer caregivers. The majority of cancer caregivers have a monthly family income of less than

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30000 lek, while 37.7% of them have an income of 30000 60000 lek. Only 3.4% of the caregivers have an income of 150000 lek and more, which maybe could ensure meeting most of their needs. Table 3. Hours per day of caregiving
Frequency Valid 1-3 hours 3-5 hours 5-7 hours Total 33 85 71 377 Percent 8.8 22.5 18.8 49.9 100.0 Valid Percent 8.8 22.5 18.8 49.9 100.0 Cumulative Percent 8.8 31.3 50.1 100.0

7 and more 188

According to Table 3, 49.9% of participants have to care for the patient for 7 or more hours per day, only 8.8% of them have caregiving tasks for 1-3 hours/day while the rest of them care for about 3 7 hours/day. Table 4. Quality of life
Frequency Valid Low High Total 99 79 377 Medium 199 Percent 26.3 52.8 21.0 100.0 Valid Percent 26.3 52.8 21.0 100.0 Cumulative Percent 26.3 79.0 100.0

Regarding the quality of life of cancer caregivers, as it results in the Table 4, cancer caregivers have reported a low to medium quality of life in their vast majority (79.1%) while only 21 % of them report high quality of life. Discussion Different care situations may have different consequences for economic burdens. In a study of Covinsky et al. (1994) it is shown that married caregivers, as compared with other caregivers, were likely to experience more economic burdens. Most patients relied completely on family members, and primary caregivers were first-degree relatives in 92% of the cases in the above study. Spouses in particular provide the most extended care and were ultimately responsible for coordinating the care. When family caregivers were married to someone other than the patient, they were likely

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to have competing obligations toward their spouses or children that might limit their level of the assistance. (Young et al., 2005). In this study it is shown that cancer caregivers have low monthly family income (< 30000 lek), which is one sphere of the quality of life. Their role as a caregiver can have many positive aspects, mainly emotional, but the economic burden is a considerable cost for them. Even if they would try to find a job, being a caregiver hampers them in this effort. So, for them this is a major difficulty, which is reflected in their employment status. Some EU countries (like France, Germany, and Sweden) have adopted the so called caregiver credits or pension credits, which are provided to individuals for time spent out of workforce while caring for dependent children and sick or elderly relatives. The primary objective of these credits, used in almost all public pension systems in the European Union, is to improve the adequacy of old-age benefits for women whose gaps in workforce participation typically lead to fewer years of contributions, lower lifetime average earnings, and consequently lower pensions (Jankowski, 2011). Concepts of social security in European countries differ from those in the United States. While Americans tend to think of social security as a pension in retirement, Europeans often use the term to refer to protection from loss of income due to a greater number of risks. This is reflected in the definition of social security of the International Labour Organization (International Labour Organization (ILO) 1952), which includes protections from the following risks: sickness, maternity, unemployment, employment injury, old age, disability, and, death of a breadwinner; plus the provision of subsidies for health care, and family expenditures for raising children. Conclusion and recommendations Caregiving is not one of the most studied subjects, especially in developing countries like Albania. Although, for traditional and developing societies like the Albanian, caregiving is an important aspect of caring for the sick or disabled relatives, this is most considered as a moral duty towards them. Of course, maybe nothing can replace the love of the family caregivers for their relatives, but the challenges that they face are many and sometimes difficult to cope with. Social policies in Albania do not include the caregiver/pension credit system, thus many unpaid caregivers are obliged to stay out of the workforce for many years. This is reflected in their quality of life, because on important aspect of it is employment and employment related welfare in general. But caregivers face even more

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challenges, like not being able to meet their health and social needs or not having time for themselves, and lack of independency. Quality of life is an important part of human rights and that is how it should be approached. Participants in this study were caregivers of the patients in the State Hospital, but some private clinics offer oncologic services. Other studies can address the same issues in these private clinics, in order to have a more thorough understanding of cancer caregiving and probably richer recommendations for policy makers.

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Abstract One aspect of human rights is the right to quality of life. Copenhagen criteria require social policies that address equality, health and anti discrimination at work. The aim of this study is to explore the effects of caregiving in quality of life of carers and in the employment status and family monthly income. For this purpose, a quantitative study was conducted with n = 377 participants. The Quality of Life Scale of Flanagan (1982) was used, as well as close ended questions regarding family income, hours of caregiving and employment status. Results of this study correlate with other studies in this field. A majority of participants report a low medium level of quality of life (79%), only 37.4 % are employed and half of them have low family monthly income. Pension/caregiver credits can be implemented in the Albanian context, based on European best practices.

. , . , . n = 377 . (1982 ), , , . . (79%), 37,4% , . , .

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