Copyright B 2015 Wolters Kluwer Health, Inc. All rights reserved.

Li-Chyun Yeh, PhD Ursula Kellet, PhD Saras Henderson, PhD Kang-Hua Chen, PhD

How Does Culture Shape Roles and Relationships in Taiwanese Family Caregiving for an Adolescent With Cancer? K E Y

W O R D S

Background: Chinese culture plays a significant part in how Taiwanese families

Adolescent with cancer

view life events. Caregivers envisage themselves as guardians of their children in all

Culture

facets of family life, including wellness and strive to maintain harmonious relationships

Family caregiving

within the family. However, it remains unclear what impact caring for an adolescent

Relationships

with cancer has on family roles and relationships in Taiwanese families, nor are the

Roles

processes for managing change in family roles and relationships associated with caregiving well understood. Objective: This study explores the impact of caregiving for an adolescent with cancer on the roles and relationships within Taiwanese families. Methods: Seven families were recruited from a medical hospital in Taiwan. Data were collected through qualitative interviews and analyzed following Strauss and Corbin’s grounded theory. Results: The core category, underpinned by Chinese culture, proved to be experiencing the broken chain of family life. This was the central issue brought about by 4 consequences for the broken chain of family life. The expression ‘‘the broken chain of family life’’ encapsulates how important Chinese cultural values are in defining caregiver task performance. Conclusions: The findings have implications for Taiwanese families in perceiving, adjusting to, and fulfilling the altered roles and relationships associated with caring for an adolescent with cancer at home. Implications for Practice: The delivery of exceptional care and services depends on gaining insight into how caregiving influences family

Author Affiliations: School of Nursing, Kang-Ning Junior College of Medical Care and Management, Taipei, Taiwan, Republic of China (Dr Yeh); School of Nursing and Midwifery, Griffith University, Nathan Campus (Dr Kellet); and School of Nursing and Midwifery, Griffith University, Gold Coast Campus, Southport (Dr Henderson), Queensland, Australia; and School of Nursing, Chang Gung University, Taoyuan (Dr Chen), Taiwan, Republic of China.

Culture and Roles and Relationships in Family Caregiving

The authors have no funding or conflicts of interest to disclose. Correspondence: Ursula Kellet, PhD, School of Nursing and Midwifery, Griffith University, Nathan Campus, 170 Kessels Rd, Nathan, Queensland, Australia 4111 ([email protected]). Accepted for publication April 23, 2014. DOI: 10.1097/NCC.0000000000000168

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roles and relationships. How families failed to manage the process of caregiving provides valuable insight for informing and providing recommendations for services and support.

C

ancer in adolescents is considered a major stressor affecting development, and it raises a unique challenge for both adolescents and their families.1 This challenge brings with it a set of new responsibilities and role expectations that place extra demands on family members who must perform a variety of tasks.2,3 Families experience illness and caregiving in different ways depending on their culture, values, and upbringing.4 The cultural context has a significant influence on the Taiwanese nuclear family, not only shaping beliefs, values, attitudes, and perceptions, but also socially informing roles, responsibilities, and relationships and people’s responses to them. In Taiwanese culture, life events form what is known as ‘‘harmony and balance’’ because wholeness and congruity among all parts of a family are important to Taiwanese people.5 In traditional Taiwanese culture and medical thought, the yin-and-yang forces maintain a harmonious balance between the body and environment.6 Illness is perceived as a state of disharmony between the individual and his/her natural and social environments.7 Taiwanese perspectives on children with cancer are influenced mainly by the philosophies of Confucianism, Buddhism, and Taoism. Some Taiwanese parents may blame themselves for their child’s illness,8 and they may negotiate with God if they are Christian or with Buddha if they are Buddhist. For example, they may pray to change the child’s fate by praying in the temple or at home, ask the child to wear a Fu (amulet), or become a vegetarian.9 According to Yeh,10 Taiwanese parents tend to believe that they have done something wrong that has caused their child to suffer a terrible cancer journey, and thus, the parent is being punished by no longer having karma available to them. Parents believe cancer carries a stigma associated with death,11 so they do not discuss bad news and sorrow with their children or relatives.12 Nonetheless, parents are still exposed to the combined pressures of social and cultural norms for family caregiving, and this may cause negative health outcomes.13 While caring for a child with a chronic condition at home may be accomplished at lower medical cost, it also leads to an increase in family burden.14 The burden is related to learning different skills for caregiving, coordinating specialty healthcare, and interfacing with a variety of systems, such as educational institutions or government agencies.15 Adolescence is a life period that implies the development of coherent self-identity and relationships with the social world. When evidence of cancer or its treatment is obvious, others in the environment may alter their responses to the adolescent, causing the adolescent to feel that his/her social relationships have been altered.4,16 The experience of cancer treatment and its side effects can be particularly devastating to adolescents who are seriously unwell at a time in their lives when they are learning to negotiate their roles and relationships in preparation for adulthood.17 Healthy siblings also report that their daily life rhythms change because they have to help with household chores and assist ill siblings with solving problems related to school or peer interactions.18 A particular challenge for healthy siblings is their

perceived experience of conflict between their own interests with school friends and their ill sibling’s needs.19 In addition, family stress may be affected by the family’s lifestyle and impact on the healthy siblings who are at high risk of psychosocial problems.20 Taiwan differs from Western countries because of the strong influence of Confucianism, which values family concerns over those of the individual.21 n

Aims

This study aimed to explore the impact of caregiving on adolescents with cancer at home and to examine the processes of managing roles and relationships associated with caregiving in Taiwanese families. n

Methods

This study used grounded theory methodology to examine the processes undertaken by family members in managing familial lives associated with caregiving in 7 Taiwanese families (27 participants), each consisting of parents, an adolescent with cancer, and his/her siblings. Mothers ranged in age from 43 to 51 years with a mean age of 46 years. Fathers ranged in age from 43 to 53 years with a mean age of 48.3 years. Seven of the siblings (5 sisters and 2 brothers) ranged in age from 15 to 22 years, with a mean age of 18 years. Of the 7 adolescents with cancer, 4 were boys and 3 were girls; the mean age was 17.7 years, with a range of 15 to 19 years. Five families were recruited from the outpatients department, and 2 families were accessed and recruited through the hospital-based cancer help workshops. The study used both initial/purposive sampling and theoretical sampling.22 Information sheets, consent forms, and demographic data for prospective participants were produced in both English and Chinese.

Participants The study sample was recruited from participants who met the following inclusion criteria: (1) adolescents (15Y19 years old) who had received cancer treatment for more than 1 year; (2) families (father, mother, and siblings) who provided care for adolescent members with cancer and resided in the same household; and (3) family members who were willing to share their experiences. In order to fully explore the nature of interactions within Taiwanese families who had adolescents with cancer, the subsequent sample was based on theoretical sampling, which maximized opportunities to uncover variations, develop concepts in terms of their properties and dimensions, and identify relationships between categories. To protect the participants’ confidentiality and anonymity, the 7 families included in the study were identified using the following pseudonyms for their family names: Yeh, Wang, Sue, Kung, Wu, Liu, and Hung. These names were chosen at

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random so as not to reveal the participants’ identities. The interviews with each of the 7 mothers lasted for up to 120 minutes. The fathers’ interviews took approximately 45 to 70 minutes each to complete. The healthy siblings spoke energetically during each 25- to 45-minute interview, and the interviews lasted between 60 and 95 minutes for the adolescents with cancer. In order to communicate effectively and gain trust during the interview process, the researcher, for whom Mandarin and Taiwanese are native languages, communicated in the participant’s preferred language.

Ethical Considerations The following 3 phases occurred during the process of gaining access to the participants for this study: first, obtaining ethical approval from Griffith University Human Research Ethics Committee; second, obtaining the permission from the Tri-Service General Hospital; and third, gaining the consent of the participants to be interviewed. The information collected was confidential and was not divulged to third parties without the participants’ consent. As noted above, in order to protect the participants’ confidentiality and anonymity, the 7 families included in this report are identified using the following pseudonyms for their family names: Yeh, Wang, Sue, Kung, Wu, Liu, and Hung. These names were chosen at random so as not to reveal the participants’ identities.

Data Collection In the present study, in-depth interviews were conducted with each member of the 7 Taiwanese families. Participants were interviewed in their own home, thus establishing a safe and comfortable environment for sharing the participants’ personal experiences and attitudes as they actually occurred.23 In addition, the researcher interviewed all participants separately to gain accurate data; thus, parents, siblings, and adolescents were individually interviewed to establish an open atmosphere of trust so that the participants would feel free to share their feelings and experiences.24 Before the interview commenced, the researcher informed participants that they could stop the interview and have the recorder turned off at any time, thus enabling the family member to decide what information was appropriate for recording. It was important to keep to general and open questions, such as ‘‘Can you describe a typical day in caring for your child?’’ or ‘‘Tell me in more detail about that,’’ in order to encourage participants to share their ideas and knowledge about care practices used in caring for an adolescent with cancer. The process of sampling and data collection continued until no additional concepts and information emerged from the data analysis, and theoretical saturation had occurred.25 To support the interview process, the additional questions that were directed by the participants’ responses were required beyond those contained in the interview guide.

Data Analysis The trustworthiness of the grounded theory approach offered a set of clear guidelines from which to build explanatory frameworks that specified the relationships among concepts. Member checks were undertaken when the initial interview findings were

Culture and Roles and Relationships in Family Caregiving

shown to 3 participant families, and a few amendments were made thereafter. Subsequently, the 3 families indicated that the findings were true to their experience, and they requested a copy of any resulting publication. To avoid personal biases during this study, the researcher clearly described the study purpose and the data collection and analysis methods. In this study, any confusion during the interview content was elucidated through separate conversations with both the translator and participants. The researcher and the translator in this study double checked common mistakes that could have been caused by the usage of differing tenses during the interviews. For example, a mother stated, ‘‘My son told me, ‘I have grown up, I know what I am doing, do not worry about me. Your worry is my pressure.’’’ The researcher and translator were careful to translate her meaning in the appropriate tense. This present study used Strauss and Corbin’s22 coding procedure to develop a substantive theory that identified the impact of caring for adolescents with cancer on Taiwanese family roles and relationships. The constant comparative method was used to analyze the data. This involved the researcher looking for similarities and differences in the data and considering their next questions to clarify the emerging concepts. These processes resulted in the categories being saturated.22 The researcher in this study practiced theoretical sensitivity by being aware of how her own values, beliefs, and predispositions impacted data collection and analysis (as supported by Holloway and Wheeler).26 During the coding and analysis procedures in the present study, theoretical sampling and memo writing, including diagramming, continued until the data were saturated and the substantive theory had been developed. Memos and diagrams are useful for researchers when coding data and are an essential part of the data analysis process.26,27 The process of writing memos was used throughout the study to help conceptualize the data and clarify the researchers’ thoughts on what was happening. For example, I wrote memos during interviews, recording such details as participant body language, tone of voice, eye contact, and parent interest in preparing folk remedies. I used these notes as cues for questions and responses, and they helped me to reflect later on my observations, in order to minimize bias in the data collection.

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Results

Data analysis revealed that there were 4 consequences for the broken chain of family life. The following section will describe these situations as gleaned from participant interviews.

Experiencing the Broken Chain of Family Life In Taiwanese culture, the chain of life signifies wholeness and congruity within all parts of the family, including both roles and relationships. Each aspect is as important as the one that precedes, follows, or overlaps it. One weak or missing link will halt this natural interconnection, and thus, the chain of life will be broken. When an adolescent has been diagnosed with cancer, the parents become totally devoted to taking care of the adolescent’s everyday needs, developing perspectives on caring practices, and learning Cancer NursingTM, Vol. 38, No. 3, 2015

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the intricacies of healthcare. This results in a great burden involving stressful emotions, such as guilt and anxiety (including a strong belief in accumulated karma as a causal factor), which can affect family bonds and perceptions regarding roles. Hence, the whole vision for the future of the family, including that of the adolescent with cancer and the healthy siblings, can appear shattered to all of the members of the family. A significant consequence of such a major illness is the disruption that the disease and caregiving requirements cause with regard to family roles and relationships. The interactions of adolescents with cancer with their family members included the following themes: parents had the sense of placing their lives ‘‘on hold’’; healthy siblings experienced various lifestyle changes; the adolescents with cancer themselves had the sense of a ‘‘setback’’ in their personal lives; and there was a general sense of a loss of control within family life. These consequences are presented in this section.

Parents’ Own Lives Put ‘‘on Hold’’ Disruption to the family roles and relationships was experienced by parents as putting their lives on hold for the sake of their adolescent with cancer. Parents noted how difficult it was to learn new skills and commit themselves to taking on the new chores or divisions of household duties. Parents adopted a more active role in their child’s care or the care of other siblings, as was the case with the fathers as well. They also experienced emotional exhaustion associated with difficulty in balancing roles and obligations connected with work and family. These obligations were overwhelming and exhausting for the family who had suffered such drastic changes while taking care of their adolescent with cancer. Some parents had become so upset caring for their adolescent with cancer that the effects remained for years following treatment. This was articulated by the mother of the Wang family, when she said ‘‘Our lives were always shadowed by this enormous life event.’’ The mothers believed, however, that their sacrifices and suffering were justifiable. Put simply, their parental obligations and the possibility of positive outcomes justified the sacrifices. They thought of their experiences as a ‘‘bitter-sweet’’ burden and gave no consideration to the resulting mental and physical exhaustion, gladly turning those sufferings into blessings. In Taiwan, gender roles remain rigid, with fathers being responsible for earning a livelihood and mothers being responsible for chores within the home. The pressure of continuing to go to work in the midst of this ongoing treatment and family crisis was often costly to the family’s total well-being and contributed to their sense of alienation, guilt, and conflict. As 1 mother commented: My life is on hold. What my life would have been likeI my obligations appeared to engulf my life. I had no other parts to my life. I could not get a break because I still worried about my child. He said he could care for himself, but how could I believe that? (Mother, 45 years old, Kung family)

Healthy Siblings Experience Lifestyle Changes The principal value of Confucianism emphasizes the elder brother’s love, the younger brother’s respect, and the son’s filial piety within

families. The healthy siblings in this study experienced differing degrees of parental guidance in relation to altering their lifestyle to assist in caring for their ailing brother or sister. Some of the healthy siblings in this study reported stresses associated with living with a brother or sister who had cancer. Most parents learned to recognize and interpret stress reactions in their healthy siblings. However, parents spent time with their ill adolescent, just to ‘‘be there’’ for them, and all became aware that it takes time to treat cancer. Thus, siblings were guilt-ridden, felt resentment about the disruption in their lives, and were angry at the impending loss of parental care and attention. This was illustrated in the following narrative: My dad favored my younger brother more than me. I tried to communicate with my dad, but that was useless because he paid no attention to me. I would do a self-review if I had done anything wrong. (Older brother, 19 years old, Yeh family)

Adolescents With Cancer Experience a Setback in Life Adolescents with cancer sensed that their illness set them back in life. The reason for this feeling could be directly or indirectly linked to the adverse effects of chemotherapy, causing feelings of extreme helplessness about their appearance changes. Because the treatment had scarred them emotionally and physically with such effects as sparse hair growth, facial swelling from steroids, limited mobility, changes in their skin, and memory loss, they expressed their distress about looking different from others. Thus, the unpredictability and uncertain course of the disease caused anxiety among the adolescents with cancer, and this anxiety stemmed from the fear that the disease would become increasingly serious. One adolescent with cancer illustrated this as follows: I would fill with anxiety about what my classmates thought the concave spot on my head was ugly. I tried to make sense of what had happened to me, but there was nothing I could change. I thought my life was hard to set back to normal or to look forward to the future. (Adolescent with cancer, 18 years old, Wu family)

Loss of Control in Family Life Fear of relapse is difficult for both the adolescent and their family. The families faced the challenges of the adolescent’s disease by making the most of their lives, with parents placing the focus on the needs of the children and trying to maintain a normal lifestyle. This altered the situation in determining how much responsibility the parents placed on their ill child. With the diagnosis of cancer, the priorities and perspectives of the families had suddenly altered. It was observed in this study that some families struggled with new challenges in their understanding of their lives and their unwillingness or inability to express their roles or relationships. As 1 father stated: When my wife was too tired to take care of our son, she would lose her temperI. She was grumpy. I knew her temper so I tried to avoid confrontation with her as

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much as possible. I always tried to share my wife’s hard work, but I had difficulties; I had to work long hours. (Father, 50 years old, Hung family) Adolescents in this study were found to react to increased dependence on their parents through frustration and depression, thus exacerbating the problems with poor self-image and decreased confidence. This is expressed in the following observation: I deeply felt I could not do what my same-age peers could and tried to increase my sense of personal responsibility for self-care, but the terrible treatment made me useless in this family. I was 18 years old, yet like a ‘‘baby.’’ You could not imagine what a difficult life my family was living. (Adolescent with cancer, 18 years old, Su family) Some of the siblings said they felt sad about decreased interactions with friends because parents feared the ill sibling would contract an infection; as a result, the healthy siblings could not go to a concert with their friends. They felt different because, unlike their peers, their activities were restricted because of their ill siblings. One sister described her feelings as follows: I just wished that my mother could understand me and not try to control me so much since she didn’t have energy and time to spend with me at homeI. I knew my brother was afraid of infections, so I took care of myself and made sure not to take a cold home. (Older sister, 20 years old, Yeh family) In summary, the disruptions to family life included parents placing their own lives on hold, healthy siblings experiencing lifestyle changes, and adolescents with cancer feeling they had experienced a setback in life. Changes in family roles and relationships, particularly the inability to take a normal part in the adolescent’s life, created real tensions for parents and healthy siblings. Parents could not participate in any typical activities and faced even more responsibility in taking care of their ill child. The need to provide care to their adolescents thus added to the numerous burdens of family life. n

Discussion

This study’s results provide information that informs a better understanding of how caregiving influences Taiwanese family roles and relationships when caring for an adolescent with cancer at home. Parents dealt with change in roles and responsibilities while taking care of their ill child, as witnessed by mothers in the present study who wanted to be like the ‘‘thousand hands of Bodhisattva,’’ meaning that they could freely move and observe all things, adapting to these roles promptly and efficaciously. Fathers played the role of the head of the household who had to bear all financial responsibilities and try to show a strong face throughout any difficulties. Healthy siblings perceived an experience of conflict between their own interests with school friends and their ill sibling’s needs. The adolescents with cancer were found to react to increased dependence on parents through frustration and depression, thus exacerbating the problems with poor self-image and decreased social activities.

Culture and Roles and Relationships in Family Caregiving

Family Roles and Relationships in Caregiving Caregiving describes a process that offers both parents and adolescents with cancer opportunities for personal growth, as also supported by Lam et al.28 Highly significant evidence of this is that filial obligation is a strong, culturally prescribed value that influences caregiving expectations in Taiwanese society.29 Accordingly, filial obligation was found in this study to influence the caregiving responsibilities, which were described by participants as a ‘‘bittersweet’’ burden. This feeling that these responsibilities were a form of ‘‘burden’’ was one of the most significant findings in this study insofar as it highlighted how cultural values and beliefs impact family caregiving and then lead to subsequent changes in roles and relationships. The parents’ behavior illustrated this impact as they strove to fulfill incompatible goals. The parents dealt with various changes in roles and responsibilities while taking care of their adolescent with cancer. They significantly reorganized their lives as their adolescent went through intensive and lengthy cancer treatments. The caregivers, particularly mothers in this study, drew on prevailing cultural discourses about parenthood, which clearly influenced the context in which they cared for their child, and which shaped their reflexive constructions of their experiences. This is consistent with the findings of Young et al,30 who found that parents in the United Kingdom gained increasing experience in caring for their adolescents with cancer and learned to make appropriate arrangements for the family’s daily life during the treatment stages accordingly.30

Experiencing of Caregiving Strain Cancer is extremely stigmatized, and the survivors are often blamed in Taiwan.31 When a child or adolescent is diagnosed with cancer, the demands of the illness are added to the numerous strains on caregiving.32 However, some researchers have asserted that while strain is an inevitable part of caring, being a caregiver can indeed provide opportunities for growth and challenge.5,11,33 In this study, parents engaged in different caregiving roles. This finding is supported by those of a study by Svavarsdottir,34 who found that 26 Icelandic mothers reported engaging in a higher level of caregiving activity than did fathers. Fathers perceived that their wives were burdened by being the primary caregiver, and some fathers reported that role obligations and choices contributed to a sense of guilt.35 The fathers did not receive needed encouragement and support and felt left out of the direct chain of medical information, eventually receiving medical information about their children secondhand through their wives in this study.

Learning to Live with Unpredictability The adolescents with cancer and their families in this study experienced family life being ‘‘broken,’’ yet they positively responded in striving to promote balance and healing. Families who are learning to live with unpredictable conditions and relationships and attempting to find the means to maintain a stable life encounter increasing difficulties when faced with cancer.36 Cancer NursingTM, Vol. 38, No. 3, 2015

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This is consistent with the findings of a study conducted by McGrath et al,37 who found that the Australian families they studied wanted their lives to be as ‘‘normal’’ as possible in terms of the roles and relationships they experienced at the familial, community, and societal levels. It is likewise similar to Da Silva and colleagues’38 finding in a study involving families in Western countries that mothers had to compromise their role of being responsible for the household and caring for their other healthy children, especially when the fathers could not be directly involved in caregiving for the adolescents with cancer. On the other hand, most fathers either added working hours or changed to a more flexible job in order to care for the healthy children at home. This is consistent with findings in previous studies of families who faced great challenges in caring for children with cancer.28,39 As was the case in Bursnall’s18 study, healthy siblings in this study reported that their daily life rhythm changed because they had to help with household chores and assist ill siblings with solving problems related to school or peer interactions. Although liberal Western ideologies have influenced family structures and relationships in Taiwan, the more than 2000-year-old history of Confucian familismVwhich includes values such as filial piety and parental authorityVis not likely to be forgotten in a few generations.40 Therefore, it is recommended that the healthy siblings should passively accept this situation and reduce the chances of getting into a quarrel with the ill sibling and parents.41

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Implications for Clinical Practice

This study’s recommendations with respect to healthcare service support and future research are provided in the Table. In particular, nursing care should become a standard component of service provision in Taiwan in order to relieve the stress experienced by families with regard to their caregiving roles and responsibilities. Families also need supplementary services so that primary caregivers can sustain the caregiving role without becoming physically exhausted and burnt out. There also needs to be

greater interaction between families and health service providers to give families the emotional and psychological support they need; thus, a unified healthcare system should become a standard component of service provision in Taiwan in order to relieve the families’ stress and burdens related to their caregiving roles and responsibilities.

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Limitations of the Study

Although this study explored and described the perspectives of families who cared for adolescent members with cancer residing in the same household, grandparents and extended families were not included. In future research studies, the entire family system needs to be brought into focus if the complex set of culturally shaped behavioral and emotional transactions involved in family roles and relationships is to be comprehensively understood. Furthermore, the study examined only families associated with 1 hospital using qualitative research. It is therefore possible that the dimensions of disease and caregiving that were identified among these participants are applicable only to other populations experiencing a similar cancer trajectory in Taiwan. Future research is necessary to explore this issue with diverse methods, for example, combining quantitative study designs with qualitative research, to clarify how caregiving obligations impact on family roles and relationships.

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Conclusion

Adolescents with cancer and their families experienced ‘‘the broken chain of family life’’ due to exposure to cancer and the demands of caregiving, which resulted in disruptions and strains through changes in family roles and relationships. The present study clearly identified the need for healthcare providers to learn from the experiences of families and adolescents with cancer by increasing their own experiences of working with families with the disease. The aim is to assist the adolescents with cancer, healthy siblings, and parents who are experiencing this journey in adjusting to the difficulties presented by the treatment.

Table & Recommendations for the Study 1. Nursing implications & Nursing care should be standard for adolescents with cancer. & The frequency of workshops and contact time between healthcare providers and families should be increased. & Parental-professional caring teams should be established. 2. Supplementary services for families to sustain caregiving & Flexibility in work situations for parents should be supported. & Caregivers should be retrained to return to work, and companies should be required to rehire caregivers. 3. Strengthening community-based services & Appropriate strategies to ease the stress of the treatment should be designed. & The needs of adolescent students when they return to school after treatment for cancer should be recognized. & Peer networks should be utilized to reduce unpredictability and uncertainty.

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Culture and Roles and Relationships in Family Caregiving

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Cancer NursingTM, Vol. 38, No. 3, 2015

Copyright © 2015 Wolters Kluwer Health, Inc. All rights reserved.

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How Does Culture Shape Roles and Relationships in Taiwanese Family Caregiving for an Adolescent With Cancer?

Chinese culture plays a significant part in how Taiwanese families view life events. Caregivers envisage themselves as guardians of their children in ...
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