Qual Life Res DOI 10.1007/s11136-014-0911-5

Perceptions of QOL among caregivers of Mexican ancestry of adults with advanced cancer Gloria Juarez • Joan J. Branin • Monica Rosales

Accepted: 23 December 2014  Springer International Publishing Switzerland 2014

Abstract Purpose There is a substantial gap in the literature about the perceptions of QOL of caregivers of Mexican ancestry. This qualitative study explores the role of culture on the perceptions of QOL of this understudied population. Methods Twenty caregivers providing care to adults with advanced cancer were interviewed. Thematic analysis identified several themes for each domain of QOL, including physical, psychological, social, and spiritual domains and the role of culture. Results Cultural background influenced all of the QOL domains. There was a tremendous synergy across domains of physical, psychological, social, and spiritual well-being. Extended family and religious beliefs, life experiences, and culture were important components of QOL for these caregivers. Cultural expectations influenced role functioning and caregiver burden. Conclusion This study informs our understanding of the role of culture on perceptions of QOL. Future investigations should be conducted with other Latino subgroups to describe QOL and to determine the role of culture on perceived QOL. Interventions should be specifically

G. Juarez (&) Nursing Research and Education, Department of Population Sciences, City of Hope, 1500 East Duarte Road, Duarte, CA 91010, USA e-mail: [email protected] J. J. Branin Center for Health and Aging, University of La Verne, La Verne, CA, USA M. Rosales Los Angeles County Department of Public Health, Los Angeles, CA, USA

designed to improve caregivers’ QOL and to reduce the burden of cancer in this underserved population. Keywords Quality of life
Caregivers
Culture
Mexican ancestry
Advanced cancer

Introduction Providing care and support across the cancer continuum for patients with advanced cancer can profoundly affect caregivers’ and family members’ overall quality of life (QOL) [1– 3]. Quality of life has been defined as a subjective, multidimensional experience involving a summary evaluation of positive and negative attributes that characterize an individual’s life, such as health and illness assessments, and necessarily are made within a cultural context. QOL is a dynamic concept that includes physical, psychological, social and spiritual dimensions. These dimensions or domains may vary among and within ethnic groups and contain some generalizations about group membership [4, 5]. It is well established in the literature that culture is an integral factor in conceptualizations and expressions of QOL [6, 7]. Culture reflects the complex and dynamic interaction of values, attitudes, and behaviors displayed and shared by its members and adapted from specific environmental and technical conditions. Individuals express culture and its normative qualities through the values they hold about life and the world around them. Culture includes values such as cultural identity (feeling you belong to a group or culture, language), spirituality (beliefs of a higher power expressed in practices (e.g., prayer and faith), familism (interdependence, loyalty, reciprocity, solidarity with family) and family support (family communication, cohesiveness, and coping), gender roles

123

Qual Life Res

and cultural health beliefs, traditions, and values (e.g., causes of illness, illness appraisal) that influence interpretation of and response to health and illness [8–10]. Gender roles are crucial to male–female relationships within the family structure as they are guided through the traditional views and values of machismo (male dominance/patriarchy) and marianismo (female modesty) [10]. Further, decision-making is often guided by the cultural value of familism. Among Mexican Americans, the entire family is often involved when making medical decisions [10]. Cultural mores play an important role in times of health crisis by helping members understand and manage major medical events, such as cancer and its advanced stages that appear to be uncontrollable and unpredictable. Thus, culture is a major contextual determinant of QOL because it defines the purpose of and prescription for living a meaningful life in sickness and in health [5, 11]. Latinos are the largest and fastest growing ethnic minority group in the USA [12] and are disproportionately burdened with chronic disease that can negatively impact their QOL [13]. Cancer is the leading cause of death among US Latinos, accounting for 21 % of deaths overall [14]. Almost 27 million Latinos in the USA speak Spanish and 12.4 million report speaking English less than ‘‘very well’’ [15]. The majority of Latinos in the USA are of Mexican ancestry and tend to experience poorer health outcomes of cancer than European American populations due to language and literacy barriers, limited educational attainment, low income, lack of health insurance and immigration status [16, 17]. Other contextual factors contributing to health disparities include less access to quality cancer care, lack of community resources and cultural and religious influences on medical decision-making and caregiving [18]. In addition, many Mexican Americans, in particular first generation immigrants, have low awareness of formal services and outside resources available to them and the health care system can be seen as intimidating and impenetrable. One cultural value that has been examined across diverse ethnic and cultural groups in the context of caregiving is familism. In Latino culture, ‘‘Familia’’ means extended family: grandparents, uncles, cousins, compadres (co-parents), friends, neighbors and even a former spouse. The family both nuclear and extended is the primary institution in traditional Latino culture [19]. While familism is not unique to Latinos. The high priority accorded to family is the most significant common cultural denominator among Latinos of various national origins and is the value most likely to remain unchanged despite migration and increased acculturation [20]. Knight et al. [21] reviewed a series of studies on caregivers from six ethnic groups and reported that familism levels varied in the expected direction with acculturation to Western values such as individualism. The highest levels of familism were

123

reported by Koreans, Korean Americans (first generation), and Hispanic Americans (first and second generation). Levels of familism among Japanese Americans were lower, which reflects greater acculturation within the USA. African-Americans, who have been in the USA for centuries, were most similar to Whites with regard to familism, but they still reported statistically significantly higher levels on this measure. These notions and norms of familismo may influence the meaning ascribed to being a caregiver within the context of Mexican American (MA) culture [22]. Chun et al. [23] examined the influence of East Asian values on the utilization of formal care services among family caregivers of Korean ethnicity. He reported that higher levels of filial piety were associated with greater use of formal care services, which were composed of both homeand community-based care (e.g., home care, adult day health care, transportation services), but that greater use did not affect mental health outcomes. The positive association between East Asian values and the use of formal social support provides some support for the importance of attention to specific cultural values and their varying effects on perceptions and use of social support [23]. Culture has been shown to influence the experiences and gender roles of Korean, Korean American, and Caucasian American family caregivers caring for frail older adults in terms of the selection of a primary caregiver, caregiving motivation, and support/help-seeking. In the Korean culture, the major primary caregivers were daughters-in-law while among Korean American and Caucasian American caregivers; the major primary caregivers were daughters or spouses [23]. In one study, the majority of White male caregivers were husbands as opposed to adult sons among African-American male caregivers [24]. Non-kin caregivers were more prominent in Black samples as compared to their Anglo counterparts, which may indicate a greater tendency toward inclusiveness in the caregiving role of individuals outside the primary kin network [24]. Viewing family caregivers’ perceptions and meaning of QOL within a cultural framework allows us to focus attention on the needs of the caregiver as well as on the demands of caregiving. In Latino culture, family plays a central role in the cancer experience by providing support and meeting the multidimensional needs of the patient. Therefore, meeting the caregiving needs of MA caregivers is imperative and cannot fully be accomplished without understanding how their beliefs, knowledge, and behaviors relate to the caregiving experience and their impact on QOL. Currently, there is a glaring gap in the literature about the perceptions and meaning of QOL among caregivers of Mexican ancestry. This perspective is critical and yet a missing component in the emerging body of evidence that supports that culturally based values between health and illness and life and death are pivotal to assessments of

Qual Life Res

QOL. To date, most cultural issues addressed by QOL studies have focused almost exclusively on non-Latino White and the translation of QOL measures and have been quantitative in nature [25–29]. The current study uses a qualitative approach to explore the role of culture on the perceptions and meaning of QOL among a sample of family caregivers of Mexican ancestry providing care to adults with advanced cancer.

Methods Sample and setting Institutional review board (IRB) approval was obtained prior to study initiation. The study was conducted in the Medical Oncology Adult Ambulatory Care Clinic at a National Cancer Institute—designated comprehensive cancer center in the United States. Written informed consent was obtained from all participants prior to participation in the study. The informed consent was available in Spanish and in English, based on participant’s preference. Caregivers were approached by the bilingual research nurse during regularly scheduled clinic visits. A convenience sample of 20 caregivers of Mexican ancestry (17 women and 3 men) participated in the study. The interviews were conducted in the participant’s preferred language. Ten caregivers chose Spanish as the only or predominant language for their interviews, and the other ten elected to do the interviews in English. The interviews were conducted at the location of the caregiver’s preference (in the participant’s home, in the outpatient clinic waiting area, in the researcher’s office, in the infusion clinic or in the cafeteria). Every effort was made to ensure privacy in order to encourage the participants to speak freely. Outcome measures Patients and caregivers completed a demographic data tool, which included questions about age, education, employment, and number of years living in the USA. Only demographic information was collected from the patient. A semi-structured interview guide was used to explore and describe the role of culture on the perceptions and meaning of QOL of the caregivers. This format encouraged caregivers to share experiences and feelings in their own words and thus elicited their perspectives about how their experiences might have influenced their perceptions of QOL. Subsequent questions were guided by caregivers’ answers for clarification and insight into QOL. The average time per interview was about 50 min, and the time range was 30–75 min.

Data analyses Descriptive analysis: Descriptive statistics were computed on caregiver demographics. Data management strategies were used to assure safety and confidentiality of the data. Qualitative Analysis: The analysis will inform the role of culture in the caregiving experience of caring for an adult family member with advanced cancer. Via thematic analysis [29], we will gain a better understanding of how cultural values and processes impact the experience of caregivers from Mexican ancestry An experienced English–Spanish/Spanish–English translator, accredited by the American Translators Association, translated the Spanish interviews verbatim from Spanish to English. To protect the confidentiality of the participants, pseudonyms in place of their names were used and all identifying information was removed in the accounts drawn from the interviews conducted for this study. In preparing for data analysis, the first author who speaks and reads Spanish as a second language listened to each audiotape (both English and Spanish) and checked for congruency of audiotape and transcription. All transcripts were analyzed in their original language to preserve linguistic accuracy and nuances of meaning. The transcripts were analyzed with thematic analysis, a method utilized for organizing and describing qualitative data in rich detail by identifying themes [30]. We followed the phases described and outlined by Braun and Clarke [30]. These phases include generating codes, searching for themes, and reviewing themes. We identified initial codes by first coding each transcript line-by-line and searching for similar topics within and across transcripts. Thus, experiences mentioned across transcripts were considered indicators of emerging patterns. Next, we reviewed initial codes in order to define recurring patterns and begin formulating critical themes [30]. Themes were identified by grouping the codes into common concepts [30] that aligned with the QOL domains outlined by Ferrell et al. [6]. Thus, codes were assigned to thematic categories based on the QOL domains in order to describe the interactive/overlapping role of culture and cancer caregiving. The themes represent the QOL domains (physical, psychological, social, and spiritual well-being) through a cultural lens. The identified themes and how well each represents participants’ narratives were revised several times. The final list of themes was reviewed to ensure that it was representative of caregivers’ perceptions of culture and QOL. Finally, the critical themes identified were categorized into groups highlighting each QOL domain and its impact (negative or positive) on QOL and the role of culture.

123

Qual Life Res

Data quality To enhance data trustworthiness and credibility, several factors were taken into account [30, 31]. First, two of the researchers/authors read each transcript and developed preliminary themes, while one team member analyzed the transcripts in their entirety. Second, the interviewer’s prior work and familiarity with Latinos helped establish rapport, trust, and fostered communication with participants. The communication and trust established by the PI with participants helped establish data trustworthiness and thus contributed to the credibility of the data [30]. Third, the researchers immersed themselves in the data by listening to interviews, transcribing, translating, and repeatedly reading the interviews [32]. Credibility was enhanced by involving a researcher trained in qualitative research, who analyzed the transcripts in their entirety [31].

Results Participant characteristics A total of 20 caregivers of Mexican ancestry participated in the present study. As shown in Table 1, the mean age of the caregivers was 41 years with 85 % women and 15 % men. Sixty percent of the caregivers were spouses of the patients, and most were born in Mexico. The majority had lived in the USA for an average of 23 years. Nearly all of the participants, except for one, lived with the patient. Spanish was the primary language spoken in 12 households. Thirty-five percent were working caregivers and employed outside the home, 20 % were housewives, 20 % had a change in job status due to the patient’s illness, 15 % were retired, and one caregiver described herself as disabled. The patients’ mean age was 49 years (range 26–80 years), slightly more than half were men, and 16 were married, two were separated, one was single and one was widowed, and were diagnosed with stage III or IV cancer. Six patients had colorectal cancer, three had leukemia, two had breast cancer, two had head and neck cancer, and seven had other cancer diagnoses. Forty percent of patients reported comorbidities including diabetes, hypertension, and depression. Meaning of quality of life One of the major issues was the perception and conceptualization of ‘‘quality of life’’ of these Mexican American family caregivers. In response to the interview question, ‘‘What does QOL mean to you?’’ The caregivers’ understanding of the meaning of QOL varied. One male

123

caregiver responded, ‘‘Giving her (patient) the best care. Mmm…for them (patients with cancer) to have peace, for them to have faith…for them to feel comfortable.’’ Another caregiver stated: ‘‘Well, quality of life determines a lot of things. Whether you are able to help a person, whether you are able to take care of yourself, whether you are able to get the kind of care that you need and maintain, and whether you will become a burden to your family and friends. Quality of life could be determined by a lot of different things…you know.’’ One female caregiver described QOL this way, ‘‘I think to me quality of life means spending every day how you want to spend it, taking care of my husband, loving everybody, letting everybody know that you love them because you don’t know…whether you’re sick or you’re not sick…or whatever, I don’t feel like you should have your life to just sit there and do nothing and be a certain way with people, be unhappy and be angry and no matter what’s going on people that have financial or people that have problems in the home. Spending my days being happy and being around my family and people I love and letting my life be as good as it can be.’’ Spanish-speaking participants primarily were the least familiar with the term ‘‘quality of life’’ or had not heard the term. When the caregivers did not know the meaning of QOL, the question was rephrased and probes were used to elicit an answer to the QOL question. Such as ‘‘How has your loved one’s illness affected your life.’’ Following this, probes were used to elicit more specific responses. For example, ‘‘How has being a caregiver affected you, physically, emotionally, socially, and spiritually?’’ In general, the meaning of QOL for these caregivers centered on taking care of the patient, being with their family, being happy, having the patient feel better, living a good life and loving people. Quality of life domains Quality of life has been defined as a personal sense of wellbeing encompassing a multidimensional perspective [33] with four domains: physical, psychological, social, and spiritual well-being. Some researchers have begun to recognize and include the influence of cultural contexts on QOL [5, 34]. The comments of the caregivers about the influence of culture and the provision of care on their QOL were categorized under the four QOL well-being domains. Critical themes within each domain were identified and analyzed for their positive and negative effect on caregiver QOL (see Table 2). This analysis of identifying critical themes representative of QOL domains was informed by previous research and may be used as a means of comparing these findings with the findings of other populations.

Qual Life Res Table 1 Caregiver demographics (N = 20) Characteristics

N

Age

X = 41.0; range 26–71 years

Years living in the USA

X = 23.0; range 1–60

Length of time as primary caregiver (years)

Range 3 months–12 years

%

Gender Female

17

85

Male

3

15

Relationship of caregiver to patient Spouse (3 husbands and 9 wives)

12

60

Daughter

6

30

Grandmother

1

5

1

5

Mexico

13

65

USA

7

35

English

8

40

Spanish

12

60

Married

16

80

Single

3

15

Living with partner

1

5

[$10,000–$20,000

6

30

$21,000–$30,000

10

50

$31,000–$45,000

2

10

$46,000–$60,000

1

5

$61,000–$80,000 Employment

1

5

Working

7

35

Retired

3

15

Housewife

4

20

Change in job status

4

20

Disabled

1

5

Other

1

5

Niece Place of birth

Primary language spoken at home

Marital status

Annual household income

Education [High school

5

25

High school graduate

8

40

Some college

5

25

College graduate

2

10

Catholic

13

65

Christian Other/none

5 2

25 10

Religion

Have a chronic illness Yes

3

15

No

17

85

4

20

Taking medications Yes

123

Qual Life Res Table 1 continued Characteristics No

N

%

16

80

11 9

55 45

Health insurance Yes No

Physical well-being Physical well-being encompasses the management symptoms and the maintenance of function and independence. Caregivers are responsible for the management of multiple patient symptoms, such as pain and fatigue. Research suggests that as patients’ disease progresses, the physical well-being of caregivers also decreases [35, 36]. The caregivers’ responses related to the physical wellbeing domain were overwhelmingly negative. In general, these caregivers seemed to routinely sacrifice their own physical needs to meet the needs of the patient. Lack of sleep was the prevalent critical theme and complaint in all the interviews. A wife who worked full-time reflected, ‘‘The only time I have trouble sleeping is when he disturbs my sleep. So when he’s moaning and groaning, getting up to…(get a drink of)…water or getting up to go to the restroom, he destroys my sleep.’’ A daughter who travelled from Mexico with an infant and toddler to take care of her father stated, ‘‘I don’t sleep very well. I, you know, I feel like my, my body is asleep and my brain awake. Because I have to listen for him.’’ It’s no longer the…the same energy as before. I don’t feel, like cleaning, like ironing…’’ Other comments associated with a negative QOL were related to increased fatigue, another critical theme, caused by caregiving and how this fatigue disrupted their ability to function and carry out their daily activities. Overall, the participants seemed to routinely sacrifice their own physical needs to meet the needs of the patient. Psychological well-being Psychological well-being refers to the psychological demands of caregiving such as depression, anxiety, and psychological distress [37]. Under psychological wellbeing, comments related to the impact of caregiving also

were associated with a majority of negative outcomes and revealed critical themes centering on control; anxiety; feeling overwhelmed; fear of recurrence; uncertainty and a sense of helplessness; and distress of diagnosis. In describing the impact of caregiving on their physical and mental health, participants sometimes found it difficult to differentiate whether their fatigue was emotional or physical. A single mother of a toddler living at home and providing care to her mother while also taking care of her father, brothers, and sisters provided an example of how her mother’s fatigue affected her own. ‘‘It’s more emotional. Emotionally, is the thing. Like, I am just tired of her being tired. It’s not really like I can’t get out of bed or I can’t do my daily things, it’s nothing like that. So, I don’t think my physical part is too much. I mean, I guess it can be a little like, I just don’t feel like eating or whatever. I just want to cry in bed sometimes but, I think I’m o.k. physically. It’s more inside, emotionally.’’ Some caregivers expressed concern about the emotional effects of caregiving on their physical well-being. A wife cried as she described how overwhelmed she felt, ‘‘I told my sister, ‘I think I’m going to have a nervous breakdown. I, I just can’t, I can’t focus. I don’t want to do anything else. I don’t want anybody. I told her (sister), it feels like I’m building this house of cards. And like a great big fat camel just fell on top of the whole thing. And the cards just came tumbling down. That’s how I felt that day.’’ Others found it difficult to cope with the emotional ups and downs of caregiving for a loved one diagnosed with advanced cancer. A young mother of two school-age children and working full-time described her emotional state as a roller coaster. ‘‘This is more emotional because it is your spouse; cancer is always kind of scary, anyway. It is emotionally draining in the fact that you are up and down.’’ These statements reveal the caregivers’ sense of frustration and anxiety and feelings of being overwhelmed.

Table 2 Quality of life well-being domains and major critical themes Domains

Predominant impact on QOL

Critical themes

Physical well-being

Negative

Rest and sleep; fatigue; functional activities: overall physical health

Psychological well-being

Negative

Control; fear of recurrence; uncertainty: sense of helplessness; distress

Social well-being

Positive

Roles and relationships; enjoyment of life; feelings of isolation

Spiritual well-being

Positive

Meaning of illness; religiosity; faith hope; inner strength

123

Qual Life Res

Uncertainty and lack of control related to not knowing what to expect along the trajectory of the illness as well as fear and anticipation of death and inability to affect the course of the disease through their care of the patient. Sometimes thinking that nothing can be done and waiting for the tumor to shrink further or the cancer to go in remission increased the caregivers’ anxiety. The following statements captured the caregivers’ feelings of uncertainty regarding their loved one’s illness, another critical theme in the psychological well-being domain, regarding their loved one’s illness. A middle age housewife expressed her feelings of uncertainty when her husband’s cancer recurred, and it was more difficult to cope with the treatment and side effects. ‘‘Oh, not knowing the outcome. Not knowing if all of this is going to be over. I know we have a long road ahead but we thought that the last time too, when he had his other one (tumor)…and they took it out. That part of it is over and now we’re going to go on and…you know and now everything is going to be healthy just going to be normal. You just never know.’’ These statements captured the psychological impact caregiving had on some participants and reflected the array of emotions caregivers go through. Social well-being The social well-being domain focuses on the social demands of caregiving primarily related to social support, relationships, roles and financial factors [38]. The caregivers’ comments related to social well-being were mostly positive. Caregivers indicated that they felt support from family, friends, church, medical staff, and co-workers. This support helped them through the day-to-day care management and the unexpected episodes of advanced cancer care. However, they also commented on how caregiving impacted their roles and relationships and their enjoyment of life, and sometimes, led to feelings of isolation, all critical themes in the social well-being domain. More specifically, they described how the patient’s illness prevented them from going out, visiting relatives and friends, and being involved in personal social activities. A male caregiver who was taking care of his 27-year-old wife (patient), two children and working full-time, stated, ‘‘We’re always home. She never feels like going anywhere. She, I don’t know. She doesn’t feel comfortable. She doesn’t want people asking her, ‘Oh, how are you?’ you know. Stuff like that. But, like, to go out where we’re out, we don’t really go anywhere.’’ Similarly another caregiver expressed, ‘‘We…don’t go, you know, like we used to go to Arizona or other places. No. Because of, he worries about the bag (colostomy), you know. So that’s a handicap that we have really. But, well you know we just go to the market and visit somebody.’’ A

daughter who was working and going to school part-time articulated her thoughts on how her mother’s cancer had changed her outlook on life. ‘‘My situation (being the caregiver) keeps me from going out with my friends—I don’t, I guess I have a different outlook than anybody else, Because of my situation. So I think like I don’t have anything in common with anyone my age (25 years).’’ Patients’ lack of energy, and not feeling well or lack of desire to go out affected caregivers’ social routines. Spiritual well-being Spiritual well-being involves the caregivers’ ability to maintain hope and derive meaning in their cancer caregiving experience, which is characterized by uncertainty [39]. Religion and spirituality were central in the life of these participants. Prayer was a way of communicating with God. Hope and faith helped them cope and provided them strength to deal with the patient’s illness. Some caregivers talked about how their faith had not been diminished by the patient’s illness and often described their faith as being stronger. Their faith and trust and the belief that they were in God’s hands helped them cope. A devout Catholic caregiver who had a shrine with lighted candles and flowers devoted to the Virgin Mary in her home, remarked, ‘‘Well, I think that…in the first place, for me, is God. So, from the time I get up, I put myself in God’s hands. ‘You guide me, I’m in your hands.’ And I think that He is the one who, moves me to do everything I have to do, and helps me to do it well.’’ This caregiver’s statement captured her belief regarding why her husband got sick, and her acknowledgment of God’s existence. ‘‘It has moved me more to faith. Because maybe we were very distant from God…I mean, on the contrary, we have received the illness as…not as a punishment but in fact, as something that maybe God is sending us as a test, to see how much we can endure. And if we were far away from Him, He is reminding us that He’s there. That He exists, and that with one finger, like that, He can take us or leave us. With a movement of His finger. That we are in His hands.’’ Although most of the spiritual changes resulting from their experiences as caregivers were described as positive, a few communicated negative spiritual experiences evoked by the patient’s cancer illness. This caregiver questioned why her mother got cancer, ‘‘I still pray, and I still believe in God. And in all the regular beliefs. But in a way, it makes you question. I sometimes question, you know, why this happened to her. Why this situation is still here. You know, she’s a good person. She’s always, she was always one to lend a hand when needed. So it just makes you think—why her? Versus anyone else.’’ Caregivers expressed anger toward God or questioned ‘‘why’’ their loved one

123

Qual Life Res

got sick. Questioning ‘‘why’’ does not necessarily mean that the person has lost their faith, but expresses their anguish that a loved one, someone who in the eyes of the caregiver has been a good person, should be stricken with this illness. Spirituality and religiosity were interwoven with their daily lives and served as foundations of strength in coping with the patient’s illness and life’s struggles.

The role of culture Caregivers may perform similar activities in all ethnic groups, but culture influences the way caregiving is defined by family members. Without an understanding of the way, caregiving is defined by family and it is impossible to develop relevant views or measures of caregiving in a multiethnic nation [40]. This section discusses the influence of culture, particularly the role of cultural beliefs, values, and attitudes on the caregiving experiences and perceptions of QOL of MA caregivers of adults with advanced cancer.

Reliance on family support In Latino culture, priority is placed on family members rather than on more impersonal institutitons for instrumental, material and emotional support [40]. In this regard, Mexican Americans strongly expect to receive support from their children. When a family member is ill, they expect that other family members particularly their children will help. The willingness and availability of family support do not nullify the patients’ ability to care for themselves. Although the sense of family support is strong in MA families, it centers on meeting physical needs and offering companionship [25]. Participants described the importance of having family’s support to assist them with the patient care, and for emotional support. ‘‘My sister, she has been right by my side. I mean it’s been good for me. It’s been very good for both of us. You know sometimes she’ll say ‘You go to bed. You take care of your migraine.’ Or ‘she’ll even rub my head. You know. And I’ll go. Oh my God. Thank you.’’ The family support exhibited by these family members exemplifies interdependence, a trait of familism [10]. However, many participants wanted more support. The participants expressed with fervor the lack of family support and that sometimes this lead to familial conflict. Participants could not see why other family members did not see that they needed help with such activities as cleaning the house or spending time with the patient. This led to feeling hurt, misunderstood, bothered, and tired.

123

Family over the individual In the MA culture, the family over the individual is emphasized. An individual’s emotional well-being and sense of identity are closely tied to the family. Strong social bonds and loyalty to the family may support and buffer caregiving [41]. One participant indicated ‘‘I don’t feel like it’s my responsibility, I just feel like it’s something that we just do for each other. I don’t feel like I have to take care of her because she’s sick. I feel like more like I am taking care of her because I want to take care of her and because I need to take care of her because she’s my mom.’’ This participant’s comment illustrates a sense of loyalty, interdependence, reciprocity, and family solidarity, all exemplified via the cultural value of familism [10]. Gender roles Strong gender role differentiation is valued in the MA culture. Males are expected to be the family provider and primary decision-maker, while women are expected to perform the instrumental tasks related to caregiving [10, 42]. High expectations for caregiving are placed on women. A daughter stated, ‘‘We all help my mom but me primarily. She’s always been there for me, so it’s like I have to be there for her. She’s been there for me through everything.’’ The participants did not directly mention the term culture, but they did talk about the influence of their families and family expectations on their experiences as a caregiver and their quality of life. Since familism is such a powerful component of Latino culture, the frequently repeated participant statements about family certainly signal a cultural influence on the perceptions of QOL.

Discussion This is one of the few studies to examine the perceptions of QOL among family caregivers of Mexican ancestry, a population that has been underrepresented in research. The findings provide insight into the cultural dimension inherent in the perceptions of QOL of these caregivers. Caregivers talked about culturally held beliefs and values that impacted their QOL. Quality of life can mean different things to different people of different cultural/ethnic backgrounds. These participants provided important insight into the specific cultural dimensions inherent in the perceptions of QOL of caregivers of Mexican ancestry from their own perspectives and shared many commonalities; however, each individual’s experience was unique. In this study, the meaning of QOL in general centered on religiosity/spirituality, faith, beliefs, and practices (prayer, faith in God),

Qual Life Res

providing the best care, extended family support, strong cultural values of familism, becoming a burden, living a good life, and cultural expectations. Within the physical well-being domain of QOL, fatigue and sleep disruption were prevalent symptoms affecting the caregiver ability to function and carry out daily activities; these symptoms are cited in the literature as predominant problems for caregivers [43, 44]. In this and other research studies [45, 46], the psychological well-being domain was characterized by emotional ups and downs, uncertainty, lack of control, and being overwhelmed. Changes in psychological well-being were manifested by anxiety, increased sensitivity, and sadness, which are well addressed in the caregiver literature [45, 46]. When describing the impact of caregiving on their physical and psychological well-being, these caregivers sometimes found it difficult to differentiate whether their fatigue was psychological or physical. QOL concerns affecting social well-being included changes in family roles as a result of the patients’ advanced disease and increasing needs. In Mexican culture, family members play a pivotal role in the care of the patient, when a loved one is ill, family is expected to help and support the patient [10, 47]. Since family is such a powerful component of Latino culture, the frequently repeated statements about family by these participants, underscores the cultural influence. Participants also commented on how caregiving impacted their relationships and enjoyment of their personal life, and sometimes, led to feelings of isolation. Varying degrees of advanced disease also have an impact on the roles of the caregiver. These role requirements are both unpredictable and ambiguous and, to some degree, continue changing until the death of their loved one [48]. Research shows that increased social support may mediate caregiver health and well-being [49]. Latino caregivers seem to have a reduced social network and lack of social resources [50]. Less educated and acculturated individuals may be driven to care for their loved ones out of cultural commitment and a strong sense of obligation, which in turn can lead them to experience feelings of isolation and abandonment [50]. This can make them more vulnerable for decreased physical and social well-being. This scarcity of resources may result in part from the fragmentation of family that can result from the immigration experience [51]. An important component of Latino culture is the family unit, and a greater dependency on family networks for providing support may discourage some Latino caregivers from seeking supportive services for either themselves or a care recipient. In cross-group comparisons of Mexican American, non-Hispanic Whites, Japanese American, and African-American caregivers. Adams et al. [52] found that Mexican American caregivers reported fewer social supports and a smaller social network

than caregivers in other ethnic groups. Also, Scharlach et al. [53] reports that foreign-born Latino caregivers are less likely to utilize outside resources than US born Latinos. The lack of use of external sources of caregiver support among Latinos makes physical and social well-being areas of concern. This qualitative study revealed two primary themes related to the construct of familism that may explain the lower use of formal services by Mexican Americans: (1) cultural norms and traditions underlying the decision to provide care and (2) personal and interpersonal fulfillment associated with fulfilling these norms and traditions. In describing their motivations for providing care, these MA participants consistently identified longstanding cultural traditions that defined their family obligations. Many felt that caregiving maintained cultural continuity and strengthened family ties [41]. An aspect of QOL slowly gaining support, and which may be useful cross-culturally, is the dimension of spiritual well-being [54]. For many, spiritual care is essential to QOL. African-Americans, Asian Americans, Latina Americans, and Euro-Americans with cervical cancer recognized the importance of faith and spirituality in coping with cervical cancer. However, their views of spirituality in the context of fate differ. African-Americans, Asian Americans, and Latina Americans viewed their fate in God’s hands, while Euro-Americans stress the significance of their relationship with the medical staff. Compared to European American cancer survivors, religious and spiritual beliefs, and practices more often are endorsed by ethnic minority survivors as one of the most important coping resources [55]. Factors affecting spiritual well-being including faith, hope, prayer, and religiosity were recognized as important cultural factors in the appraisal of QOL by these caregivers. They believed that their fate was in God’s hands or the Virgin Mary. Prayer, faith, and hope provided them with sources of strength and comfort to help them deal with the everyday stresses and uncertainty of the patient’s illness. Compared to White caregivers, non-White caregivers endorse more strongly held beliefs about filial support and were more likely to use prayer, faith, or religion as coping mechanisms [56]. Caregivers noted their strong religiosity/ spirituality as a primary coping mechanism identified in other studies that addressed the importance of religiosity and spirituality as an important primary coping resource for these caregivers [56, 57]. A review of the literature reveals certain ethnic and cultural similarities and differences among family caregivers and the impact of caregiving on their QOL. Although the caregiving role is most likely to be fulfilled by a female, the relationship of the caregiver to the care recipient varies across ethnic group affiliation. Latino

123

Qual Life Res

caregivers are most likely to be daughters or daughters’ inlaw [58]; Caucasian Americans are most likely to be spouses, while African-American caregivers are most likely to be adult children, friends, or members of the extended family [55]. However, ethnic group differences of depressive symptomatology and other negative aspects of caregiving have been noted with higher levels of depression and stress and lower satisfaction with life among Latino caregivers relative to other ethnic groups [59, 60]. Relative to Caucasian Americans, ethnic minorities underutilize mental health services [61]. Similarly, research suggests low levels of formal service utilization and, to some extent, more caregiver burden, among Latino caregivers, relative to Caucasian American caregivers [62]. The perceptions of QOL cannot be understood as an objective event separated from its cultural context. Understanding comes from eliciting the cause and meaning of the caregiver’s own cancer experience. Cultural norms and expectations affect many aspects of a cancer diagnosis including QOL, who constitutes the family, dynamics that occur within the family unit in response to a life threatening illness, commitment to caregiving and responses to treatments and their side effects. As noted in the literature and this study, MA family caregivers tend to focus on the care recipient and their needs whereby family well-being takes precedence over personal considerations [53]. Regarding programs and service implications, this study stresses the importance of providing services that emphasize the family system rather than the individual caregiver. Services to meet the needs of the individual caregiver rather than the family system are often underutilized by Hispanic and nonWhite caregivers [52]. Caregiver support services, training, and counseling services need to be presented as mechanisms for enabling the caregiver to provide better care of the care recipient. Service providers should be as similar to the care recipient as possible to overcome mistrust of ‘‘outsiders.’’ Community partnerships between the aging network and accepted ethnic-specific community-based entities which already are trusted by and familiar to Hispanic caregivers can help overcome recruitment barriers and enhance service participation. Community partnerships also can enhance the social capital of the community thus improving the long-term ability of these communities to meet the needs of MA caregivers. A few caveats should be noticed in evaluating our findings, including the convenience sampling approach, the length of caregiving, and the number of years caregivers had lived in the USA. This study was limited to caregivers of Mexican ancestry of adults with advanced cancer and may not reflect the experiences of other Latino subgroups caring for early stage cancers patients. Despite these

123

limitations, this study builds upon and adds to the existing literature about perceived QOL caregivers as one of the first exploratory studies of caregivers of Mexican ancestry. Further investigations should be conducted with other caregiver Latino subgroups to describe QOL and to determine the influence of culture on perceive QOL. Further research is also needed to explore Latino patients’ perceptions of QOL.

Conclusion As evidenced by the findings, culture influenced the perception of QOL of these caregivers. Results provide information to support culturally relevant interventions for this underserved group. Based on these factors, these caregivers may need individualized intervention approaches that effectively consider their beliefs as important for improving the overall QOL. Culturally relevant materials that are linguistically tailored to Spanish-speaking patients and caregivers of Mexican ancestry and other Latino subgroups need to be developed. These materials will enable the family caregivers to improve or maintain their QOL during the long and difficult period of caregiving for a loved one with advanced cancer. Clinicians need to consider careful assessments that include the caregiver’s individual needs as well as the development, implementation, and evaluation of a plan of care based on the patient’s and caregiver’s culture. The inclusion of the needs of the family caregiver as well as the care recipient in care planning can have positive effects on each person’s longterm QOL during cancer survivorship. It is important to recognize that caregivers’ overall QOL is influenced by the patient’s advanced disease, cultural background, family expectations, physical, social, emotional and spiritual needs, and life experiences. Viewing family caregivers’ perceptions and meaning of QOL within a cultural framework allows us to focus attention on the needs of the caregiver as well as on the demands of caregiving. The need for the inclusion of culture in the arena of QOL research is imperative. A better understanding of the role of culture on the perceptions and experiences of MA caregivers can improve the quality of care for patient and caregiver, reduce disparities in the healthcare system, and better inform the design of public policies, programs, and interventions for cancer care for all and, in particular, Latinos. This research study enhances our understanding of QOL within a cultural context for this understudied cancer population and provides evidence of the great need for research on the role of culture on the perceptions of QOL of Latinos.

Qual Life Res

References 1. Given, B. A., Given, C. W., & Sherwood, P. R. (2012). Family and caregiver needs over the course of the cancer trajectory. The Journal of Supportive Oncology, 10(2), 57–64. 2. Kim, Y., & Given, B. A. (2008). Quality of life of family caregivers of cancer survivors: Across the trajectory of the illness. Cancer, 112(S11), 2556–2568. 3. Kitrungrote, L., & Cohen, M. Z. (2006). Quality of life of family caregivers of patients with cancer: A literature review. Oncology Nursing Forum, 33(3), 625–632. 4. Ashing-Giwa, K., & Kagawa-Singer, M. (2006). Infusing culture into oncology research on quality of life. Oncology Nursing Forum, 33(S1), 31–36. 5. Kagawa-Singer, M., Padilla, G. V., & Ashing-Giwa, K. (2010). Health-related quality of life and culture. Seminars in Oncology Nursing, 26(1), 59–67. 6. Ferrell, B. R., Dow, K. H., Leigh, S., Ly, J., & Gulasekaram, P. (1995). Quality of life in long-term cancer survivors. Oncology Nursing Forum, 22(6), 915–922. 7. Dow, K. H., Ferrell, B. R., Leigh, S., Ly, J., & Gulasekaram, P. (1996). An evaluation of the quality of life among long-term survivors of breast cancer. Breast Cancer Research and Treatment, 39(3), 261–273. 8. Holliday, A. (2010). Complexity in cultural identity. Language and Intercultural Communication, 10(2), 165–177. 9. Elder, K. A., Paris, M, Jr, An˜ez, L. M., & Grilo, C. M. (2008). Loss of control over eating is associated with eating disorder psychopathology in a community sample of Latinas. Eating Behaviors, 9(4), 501–503. 10. Galanti, G. A. (2003). The Hispanic family and male-female relationships: An overview. Journal of Transcultural Nursing, 14(3), 180–185. 11. Kagawa-Singer, M., Dadia, A. V., Yu, M. C., & Surbone, A. (2010). Cancer, culture, and health disparities: Time to chart a new course? CA: A Cancer Journal for Clinicians, 60(1), 12–39. doi:10.3322/caac.20051. 12. Pew Hispanic Center. (2012). Statistical portrait of Hispanics in the United States, in Pew Hispanic Center. 13. US Department of Health and Human Services Healthy People 2020. (2010). [cited 2014 5/15/14]. http://www.healthypeople. gov/2020/default.aspx. 14. Siegel, R., Ma, J., Zou, Z., & Jemal, A. (2014). Cancer statistics, 2014. CA: A Cancer Journal for Clinicians, 64(1), 9–29. doi:10. 3322/caac.21208. 15. Census Bureau US. (2000). State and county quick facts, 2002. US Census Bureau. 16. Brawley, O. W., & Berger, M. Z. (2008). Cancer and disparities in health: Perspectives on health statistics and research questions. Cancer, 113(S7), 1744–1754. doi:10.1002/cncr.23800. 17. Bradley, C. J., Given, C. W., & Roberts, C. (2001). Disparities in cancer diagnosis and survival. Cancer, 91(1), 178–188. 18. Guidry, J. J., Torrence, W., & Herbelin, S. (2005). Closing the divide: Diverse populations and cancer survivorship. Cancer, 104(S11), 2577–2583. 19. Sabogal, F., Marin, G., Otero-Sabogal, R., Marin, B., & PerezStable, E. (1987). Hispanic familism and acculturation: What changes and what doesn’t? Hispanic Journal of Behavioral Sciences, 9, 397–412. 20. Velasquez, R. J., Arellano, L. M., & McNeill, B. W. (2004). The handbook of Chicano/o psychology and mental health. Hillsdale, NJ: Erlbaum. 21. Knight, B. C., Robinson, C. S., Flynn Longmire, C. V., Chun, M., Nakao, K., & Kim, J. (2002). Cross cultural issues in caregiving for dementia: Do familism values reduce burden and distress? Ageing International, 27, 70–93.

22. Escandon, S. (2006). Mexican American intergenerational caregiving model. Journal of Nursing Research, 28(5), 564–585. 23. Chun, M., Knight, B., & Youn, G. (2007). Differences in stress and coping models of emotional distress among Korean, KoreanAmerican and White-American caregivers. Aging & Mental Health, 11, 20–29. 24. Haley, W. E., et al. (1996). Appraisal, coping, and social support as mediators of well-being in black and white family caregivers of patients with Alzheimer’s disease. Journal of Consulting and Clinical Psychology, 64(1), 121–129. 25. Juarez, G., Ferrell, B., & Borneman, T. (1998). Perceptions of quality of life in Hispanic patients with cancer. Cancer Practice, 6(6), 318–324. 26. Munoz, C., Juarez, G., Munoz, M. L., Portnow, J., Fineman, I., Badie, B., et al. (2008). The quality of life of patients with malignant gliomas and their caregivers. Social Work in Health Care, 47(4), 455–478. doi:10.1080/00981380802232396. 27. Ashing-Giwa, K. T., & Lim, J. M. (2011). Health-related quality of life outcomes among cervical cancer survivors: Examining ethnic and linguistic differences. Cancer Epidemiology, 35(2), 194–201. doi:10.1016/j.canep.2010.06.006. 28. Ashing-Giwa, K., & Lim, J. M. (2010). Predicting physical quality of life among a multiethnic sample of breast cancer survivors. Quality of Life Research, 19(6), 789–802. doi:10.1007/ s11136-010-9642-4. 29. Edwards, B., & Ung, L. (2002). Quality of life instruments for caregivers of patients with cancer: A review of their psychometric properties. Cancer Nursing, 25(5), 342–349. 30. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. 31. Creswell, J. W., & Miller, D. L. (2002). Determining validity in qualitative inquiry. Theory into Practice, 39(3), 1–130. 32. Morrow, S. L. (2005). Quality and trustworthiness in qualitative research in counseling psychology. Journal of Counseling Psychology, 52(2), 250–260. 33. Ferrell, B. R., Dow, K. H., & Grant, M. (1995). Measurement of the quality of life in cancer survivors. Quality of Life Research, 4(6), 523–531. 34. Ashing-Giwa, K. (2005). The contextual model of HRQoL: A paradigm for expanding the HRQoL framework. Quality of Life Research, 14(2), 297–307. 35. Given, B. A., Sherwood, P., & Given, C. W. (2011). Support for caregivers of cancer patients: Transition after active treatment. Cancer Epidemiology, Biomarkers and Prevention, 20(10), 2015–2021. doi:10.1158/1055-9965.EPI-11-0611. 36. Stenberg, U., Ruland, C. M., & Miaskowski, C. (2010). Review of the literature on the effects of caring for a patient with cancer. Psychooncology, 19(10), 1013–1025. doi:10.1002/pon.1670. 37. Kim, Y., Kashy, D. A., & Evans, T. V. (2007). Age and attachment style impact stress and depressive symptoms among caregivers: A prospective investigation. Journal of Cancer Survivors, 1(1), 35–43. doi:10.1007/s11764-007-0011-4. 38. Rivera, H. R. (2009). Depression symptoms in cancer caregivers. Clinical Journal of Oncology Nursing, 13(2), 195–202. doi:10. 1188/09.CJON.195.202. 39. Kim, Y., Wellisch, D. K., Spillers, R. L., & Crammer, C. (2007). Psychological distress of female cancer caregivers: Effects of type of cancer and caregivers’ spirituality. Supportive Care Cancer, 15(12), 1367–1374. 40. Flores, Y. G., Hinton, L., Barker, J. C., Franz, C. E., & Velasquez, A. (2009). Beyond familism: Ethics of care of Latina caregivers of elderly parents with dementia. Health Care Women International, 30(12), 1055–1072. doi:10.1080/0739933090 3141252. 41. Lim, Y. M., Luna, I., Cromwell, S. L., Philipps, L. R., Russell, C. K., & de Ardon, E. T. (1996). Towards a cross-cultural

123

Qual Life Res

42.

43.

44. 45.

46.

47.

48.

49.

50.

51.

52.

understanding of family caregiving burden. Western Journal of Nursing Research, 18(3), 252–266. Mendelson, C. (2005). Mexican American women’s struggle to create household health. In J. W. Lee (Ed.), Gender roles (pp. 53–86). New York: Nova Biomedical Books. Carter, P. A. (2002). Caregivers’ descriptions of sleep changes and depressives symptoms. Oncology Nursing Forum, 29(9), 1277–1283. Carter, P. A. (2003). Family caregivers’ sleep loss and depression over time. Cancer Nursing, 26(4), 253–259. Kim, Y., Baker, F., Spillers, R. L., & Wellisch, D. K. (2006). Psychological adjustment of cancer caregivers with multiple roles. Psychooncology, 15(9), 795–804. Roth, D., Perkins, M., Wadley, V. G., Temple, E. M., & Haley, W. E. (2009). Family caregiving and emotional strain: Associations with quality of life in a large national sample of middleaged and older adults. Quality of Life Research, 18(6), 679–688. doi:10.1007/s11136-009-9482-2. Wells, J. N., Cagle, C. S., Bradley, P., & Barnes, D. (2008). Voices of Mexican-American caregivers for family members with cancer: On becoming strangers. Journal of Transcultural Nursing, 19(3), 223–233. doi:10.1177/1043659608317096. Wells, J., & Cagle, C. S. (2009). Perceived mood, health and burden in female Mexican American family caregivers. Health Care for Women International, 30, 629–654. doi:10.1080/ 07399330902928857. Gustavsson-Lilius, M., Julkunwn, J., & Hietanen, P. (2007). Quality of life in cancer patients: The role of optimism, hopelessness, and partner support. Quality of Life Research, 16(1), 75–87. Friedemann, M. L., Buckwalter, K. C., Newman, F. L., & Mauro, A. C. (2013). Patterns of caregiving of Cuban, other Hispanic, Caribbean Black, and White elders in South Florida. Journal of Cross Cultural Gerontology, 28(2), 137–152. doi:10.1007/ s10823-013-9193-6. Knight, B. G., & Sayegh, P. (2010). Cultural values and caregiving: The updated sociocultural stress and coping model. Journal of Gerontology: Psychological Sciences, 65B(1), 5–13. doi:10.1093/geronb/gbp096. Adams, B., Aranda, M. P., Kemp, B., & Takagi, K. (2002). Ethnic and gender differences in distress among Anglo American,

123

53.

54.

55.

56.

57.

58.

59.

60.

61.

62.

African American, Japanese American, and Mexican American spousal caregivers of persons with dementia. Journal of Clinical Geropsychology, 8(4), 279–301. Scharlach, A. E., Giunta, N., Chow, J. C., & Lehning, A. (2008). Racial and ethnic variations in caregiver service use. Journal of Aging and Health, 20(3), 326–346. doi:10.1177/0898264308315426. Brady, M. J., Peterman, A. H., Fitchett, G., Mo, M., & Cella, D. (1999). A case for including spirituality in quality of life measurement in oncology. Psychooncology, 8(5), 417–428. Connell, C. M., & Gibson, G. D. (1997). Racial, ethnic, and cultural differences in dementia caregiving: Review and analysis. The Gerontologist, 37(3), 355–364. Wildes, K. A., Miller, A. R., de Majors, S. S., & Ramirez, A. G. (2009). The religiosity/spirituality of Latina breast cancer survivors and influence on health-related quality of life. Psychooncology, 18(8), 831–840. doi:10.1002/pon.1475. Campesino, M., & Schwartz, G. E. (2006). Spirituality among Latinas/os: Implications of culture in conceptualization and measurement. Advances in Nursing Science, 29(1), 69–81. Harwood, D. G., Barker, W. W., Ownby, R. L., Bravo, M., Aguero, H., & Duara, R. (2000). Predictors of positive and negative appraisal among Cuban American caregivers of Alzheimer’s disease patients. International Journal of Geriatric Psychiatry, 15(6), 481–487. Hahn, E. A., Kim, G., & Chiriboga, D. A. (2011). Acculturation and depressive symptoms among Mexican American elders new to the caregiving role: Results from the Hispanic-EPESE. Journal of Aging and Health, 23(3), 417–432. doi:10.1177/0898264310380454. Roth, D. L., Haley, W. E., Owen, J. E., Clay, O. J., & Goode, K. T. (2001). Latent growth models of the longitudinal effects of dementia caregiving: A comparison of African American and White family caregivers. Psychology and Aging, 16(3), 427–436. Wood, J. B., & Parham, I. A. (1990). Coping with perceived burden: Ethnic and cultural issues in Alzheimer’s family caregiving. Journal of Applied Gerontology, 9(3), 325–339. Hinton, W. L., Fox, K., & Levkoff, S. (1999). Introduction: Exploring the relationships among aging, ethnicity, and family dementia caregiving. Culture, Medicine and Psychiatry, 23(4), 403–413.