Caring for patients with oral cancer in Taiwan: The challenges faced by family caregivers

Family caregivers face multiple challenges when caring for patients with oral cancer at home. Understanding the difficulties they face may assist health professionals to better organise and provide support for family caregivers of oral cancer patients. The aim of this study was to describe the caregivers’ primary tasks and the difficulties they encounter when caring for a family member with oral cancer. This qualitative study included a purposeful sample of 22 primary family caregivers ranging in age from 25 to 71 years old. The researchers used face‐to‐face, semi‐structured and tape‐recorded interviews to collect data and employed qualitative content analysis to elicit caregiving‐related themes. Six task‐related themes and associated challenges were identified. These included managing the patient's nutritional issues, investigating and making decisions about patient care, managing sudden and unpredictable changes in the patient's condition, managing emotional distress, adjusting their attitudes towards patient care, and seeking resources. Family caregivers handle such essential tasks when they care for patients in home settings and they face specific challenges related to them. This study identified several challenges related to each task. From the outset, healthcare providers should actively offer caregiving information and strategies. Health professionals can incorporate strategies for supporting caregivers’ ability to carry out these tasks into their treatment model and can help caregivers manage difficulties that can impede them from doing so.     

The information and learning needs of the caregiving family of the adult patient with cancer

The need for information by the caregiving family of an adult patient with cancer has been identified by research. This paper is a literature review of the information and learning needs of caregiving relatives. By meeting these needs the health care professional is able to help support the family, and therefore the patient, with the difficult adjustment to the diagnosis and through the subsequent course of the disease. The health care professional facilitates the individual caregivers'coping mechanisms and the benefits can be seen in the caregiving outcome for both the family and the patient. Information needs vary from individual to individual and are dynamic throughout the cancer experience. This paper describes the role of the nurse in this area, and encourages the nurse to act as a resource person for the caregiver by the appropriate delivery of information and by ensuring that the information given to the family by other health care professionals is understood and fulfils their needs.     

When Patients Die: Grief Amongst Health Care Professionals

Much of the literature pertaining to grief and bereavement focuses on the grief experienced by patients and their family members. Little has been written concerning grief amongst health care professionals. Many health professionals care for terminally ill patients on a daily basis. Often they follow the patient throughout the course of their illness, forming a relationship with both patient and family. The impact of a patient's death is often not addressed, nor are coping strategies to prevent stress and burnout. This paper will address the issue of grief amongst health professionals and offer strategies for coping.     

Caring for cancer patients: relatives' assessments of received care

This study aims to find out what cancer patients' relatives regard as important factors of patient care. The concept of 'patient care' is defined as consisting of two domains: the content of health care professionals' action and health care professionals' way of performing that action. The sample consisted of 168 relatives of cancer patients from oncological wards from all over Finland. The data was collected with a questionnaire. Nonparametric tests were used for statistical analysis. The results showed that relatives regarded both the content of care and the way in which it was provided as important. The most important factors were the professional skill and trustworthiness of staff members and the safety of care. Relatives regarded information about the patient's prognosis as less necessary than information about the patient's cancer, its treatment and the side-effects of treatment. Relatives were generally pleased with the standards of care received by patients. Satisfaction with the actions of health care professionals was highest on the dimensions of professionalism, professional skill, trustworthiness, and friendliness. Two-thirds of the relatives said the patient did not have a primary nurse. It was also mentioned that there was little encouragement for the patients to take part in decision-making concerning their care.     

Communication and Cancer

Dealing with cancer involves a number of complex communication issues for patients, health professionals, and family members. This article examines over 200 clinical papers and research studies published between 1966 and 1986 that focus on communication dimensions of the cancer experience. The review analyzes communication issues from three p&spectives: the patient, the health orofessional. and the farnilv. The literature indicates that the major dommunicatibn issues for pkients are related to maintaining a sense of control, seeking information, disclosing feelings, and searching for meaning. For health professionals, the primary communication issues center on imparting information, communicating hope, and sharing control. The major issues facing family members pertain to the concealment of feelings, acquiring information, and coping with helplessness. The article also provides a methodological critique of the literature, citing strengths and weaknesses and pointing to directions for future research.     

Determinants of caregiving experiences and mental health of partners of cancer patients.

BACKGROUND: Research regarding informal caregiving showed considerable individual variation in responses to cancer caregiving. The current longitudinal study examined determinants of caregiver outcomes in terms of caregiver experiences at 3 months and caregiver's mental health at 6 months after hospital discharge. It included both negative and positive dimensions of caregiving outcomes. METHODS: One hundred forty-eight patients with newly diagnosed colorectal carcinoma and their partners were included. Caregiver experiences were assessed by the Caregiver Reaction Assessment Scale, which contains four negative subscales (disrupted schedule, financial problems, lack of family support, and loss of physical strength) and one positive subscale (self-esteem). The mental health of the caregiver was assessed in terms of depression and quality of life. Possible determinants of the caregiver's experiences and mental health were categorized according to characteristics of the caregiver, the patient, and the care situation. Caregiving experiences were studied as a fourth additional category of possible determinants of the caregiver's mental health. RESULTS: Each domain of the caregiving experience was explained by different factors, with total explained variances ranging between 11-46%. Negative caregiver experiences were associated with a low income, living with only the patient, a distressed relationship, a high level of patient dependency, and a high involvement in caregiving tasks. Caregivers with a low level of education and caregivers of patients with a stoma were able to derive more self-esteem from caregiving. Although caregiving may lead to depression, especially in those experiencing loss of physical strength, caregivers may sustain their quality of life by deriving self-esteem from caregiving. CONCLUSIONS: It is important that professionals involved in the ongoing care of cancer patients and their families be aware of the increasing demands made on caregivers and the specific problems and uplifts they perceive in caregiving. Professional caregivers are urged to involve informal caregivers with care explicitly and continuously. However, specific attention to those caregivers who live only with the patient, those with a low income, those with a distressed relationship, and those with a high level of patient dependency and care involvement is warranted.     

Issues related to family history of cancer at the end of life: a palliative care providers’ survey

Addressing the concerns of end-of-life patients or their relatives about their family history of cancer could benefit patients and family members. Little is known about how palliative care providers respond to these concerns. The purpose of this pilot study was to assess palliative care providers’ knowledge about familial and hereditary cancers and explore their exposure to patients’ and relatives’ concerns about their family history of cancer, and their self-perceived ability to deal with such concerns. A cross-sectional survey was conducted in the Quebec City (Canada) catchment area among palliative care professionals. Fifty-eight palliative care professionals working in hospice, home care and hospital-based palliative care units completed the questionnaire. All physicians and 63% of nurses occasionally addressed concerns of patients and relatives about their family history of cancer, but they reported a low confidence level in responding to such concerns. They also showed knowledge gaps in defining features of a significant family history of cancer, and most (78%) would welcome specific training on the matter. Our findings highlight the relevance of offering education and training opportunities about familial cancers and associated risks to palliative care providers. The needs and concerns of end-of-life patients and their families need to be explored to ensure palliative care providers can adequately assist patients and their relatives about their family history of cancer. Ethical implications should be considered.     

A longitudinal communication approach in advanced lung cancer: A qualitative study of patients’, relatives’ and staff's perspectives

Communication and the care of patients with advanced cancer are a dynamic, interactive and challenging process, often characterised in every day practice by discontinuity and lack of coordination. The objective of this study was to explore the patients’ and family‐caregivers’ needs and preferences regarding communication, quality of life and care over the trajectory of disease. The second aim was to assess health professionals’ views on a longitudinally structured, forward‐thinking communication approach based on defined milestones. A qualitative approach was chosen incorporating semi‐structured interviews with nine patients with metastatic lung cancer and nine relatives, and focus groups with 15 healthcare providers from different professions involved in the care of these patients. Patients and relatives described a situation of shock and coping deficits with moments of insufficient communication and lack of continuity in care. Healthcare providers reported the strong need for improvement in communication within the team and between patients and professionals and welcomed the implementation of a longitudinal communication approach. Requirements for the implementation of a longitudinal communication approach include specific communication training with focus on the process that patients and relatives are involved in. Team‐building measures and the necessary flexibility to respect individuality in life should be incorporated.     

Family and caregiver needs over the course of the cancer trajectory

When a patient is diagnosed with cancer, family members often assume responsibility for providing care. They are typically involved not only with the diagnostic and treatment phases of care but also across the care trajectory and into survivorship. These caregivers are a primary source of support to individuals with cancer. The purpose of this article is to present an overview of the challenges, needs, and roles of family caregivers over the course of the cancer treatment trajectory and to discuss what support the professionals can provide. Caregivers require support, coordination, and communication with health care providers if they are to be successful in carrying out tasks of care. Concern for caregivers as partners in patient care and caregiver outcomes deserves attention from health care professionals. Considering the caregivers' value to the health care team, this role should not be underestimated.     

Patients with Cancer and their Relatives Beliefs,Information Needs and Information-Seeking Behavior about Cancer and Treatment

Purpose: To identify cancer patient and relatives beliefs, information needs, information-seeking behavior and information sources about cancer and treatment. Methods: This research was conducted at two hospitalsof a university. Data was collected via questionnaires and the Turkish version of the Miller Behavioral Style Scale (MBSS) to assess information-seeking behavior. The sample included 82 patients and 54 relatives. Results: Patients were receiving treatment mostly for breast, gynecologic, lung cancer and leukemia/ lymphoma. All of them indicated that they want to be informed by a doctor about their diagnosis and treatment first. Other information sources were internet, media and nurses. The majority of the patients and half of their relatives agreed that “cancer is curable and preventable disease”. Only 2.5% of patients agreed with the statement “I don’t want to get information about disease which disturbs me”. According the data obtained from MBSS; the mean patients MBSS score (6.41±3.2) was higher than their relatives (5.46±3.1). Respondents with higher education and younger age indicated more information-seeking behavior. Conclusions: Patients and their relatives differ in some of their information-seeking behavior. Patients beliefs and their strategies for coping with their illnesscan constrain their wish for information and their efforts to obtain it. Healthcare professionals need to assess and be sensitive to the information-seeking behavior of cancer patients and their relatives.     

Patient awareness of prognosis, patient-family caregiver congruence on the preferred place of death, and caregiving burden of families contribute to the quality of life for terminally ill cancer patients in Taiwan

Objectives: The main goal of end‐of‐life care is to achieve the best quality of life (QOL) for patients. The purpose of this study was to investigate the impact of (1) the patients' awareness of their prognosis, (2) the extent of patient–family caregiver congruence on the preferences for end‐of‐life care options, and (3) the perceived caregiving burden of family caregivers when they provide end‐of‐life care to their dying relative, on the QOL for terminally ill cancer patients in Taiwan. Methods: A total of 1108 dyads of patient–family caregiver from 24 hospitals throughout Taiwan were one‐time surveyed. Predictors of the QOL were identified by multiple regression analysis. Results: Controlling for the effects of age, financial status, and symptom distress, a novel finding of this study was that the patient awareness of prognosis, patient–family caregiver congruence on the preferred place of death, and the subjective family caregiving burden had a significant impact on the QOL of Taiwanese terminally ill cancer patients. Conclusions: QOL is not only related to the unavoidable decline in physical condition and daily functioning of the dying patient but is also related to domains that, as death approaches, have the potential to show improvement through the efforts of health‐care professionals, such as presenting prognostic information to optimize the patients' understanding and assists them with psychological adjustments, facilitating patient–family caregiver congruence on the end‐of‐life care decision regarding the place of death and lightening the caregiving burden of family caregivers. Copyright © 2008 John Wiley & Sons, Ltd.     

Managing the psychosocial consequences of cancer recurrence: implications for nurses

Patients experiencing a recurrence of malignancy offer many unique challenges to nurses. One of these challenges is to assist patients in coping with the psychosocial impact of a recurrence of malignancy. A recurrence of malignancy is a distinctly different event from an initial diagnosis of cancer. As primary caregivers, nurses first must accurately assess not only the patient's perception of the recurrence but also its impact on the patient's family, social activities, and roles. Nurses must consider carefully their own feelings concerning recurrence of cancer and how these feelings influence the care they render to this group of patients. Appropriate nursing intervention includes not only the patient but also the family and significant others. Issues related to future nursing research with this population are discussed.     

Le proche et les soignants

The post of psychologist attending exclusively to Institute Curie personnel was created in 1995. The very nature of cancer and its effects, the anxiety that it causes and the risk of death, amplify the difficulties for healthcare personnel, particularly with respect to projection mechanisms (attributing one’s own feelings, family patterns, or even one’s own ideals to others). Although it is now considered best practice to listen to the patients and their relatives at the same time and in the same place, this does not simplify the task for healthcare personnel, as the multiple requests to listen and invitations to speak can be very disturbing for some members of staff, whose distress can signal a malaise that must now be analysed and taken into account. While caring is also and above all recognizing the place of everyone concerned, whether patient, relative or health worker, healthcare personnel must also be given time to talk, as communication problems can often cause unnecessary suffering for healthcare personnel as well as patients and relatives. Taking care of others also means taking care of oneself: the psychologist, in the context of this function of attending to healthcare personnel, must work as closely as possible to reality, i.e. as closely as possible to the everyday experience of healthcare personnel. In talk groups devoted exclusively to healthcare personnel at the Institute Curie, health workers can talk about their questions, emotions, affects and feelings as they deal with more or less complicated cases. Apart from the emotional burden related to the increasingly complex management of patients in hospitals, healthcare personnel also express their consternation with respect to families experiencing major suffering, which is reflected either by a presence considered to be too invasive or, on the contrary, by their absence. Analysis of a typical clinical history illustrates how healthcare personnel must keep a certain distance in order to treat the patient effectively and how it is essential to provide healthcare personnel with somewhere private where they can discuss their difficulties, thus encouraging a feeling of solidarity amongst healthcare personnel and enabling them to listen to each other more effectively without passing judgement. Because they spend so much time listening to patients and relatives and becoming involved in their various contradictory paths and desires, healthcare personnel are no longer able to listen to themselves or to each other, and they may even blame their difficulties, malaise or fatigue on their colleagues, thereby creating tension between members of staff, between teams, between departments and sometimes between institutions. The essential role of a psychologist attending to healthcare personnel is therefore to encourage them to consider the impact of all aspects of their work on patients, relatives and all healthcare staff.     

The relationship between available support, unmet needs and caregiver burden in patients with advanced cancer and their carers

Caregiver burden is an increasing problem with patients surviving longer and more care tasks falling to informal caregivers. While research has identified patient and caregiver variables associated with caregiver burden, less research has focused on aspects of the care environment. The present study investigated the available support and unmet needs of 57 patients with advanced cancer, 45 of their carers and 40 of their health professionals. Carers and patients consistently identified higher levels of available support for the patient than health care professionals, with carers identifying higher levels of support than patients. Carers also identified more patient unmet needs than health care professionals, who in turn identified more than patients. Surprisingly, available support did not increase over 6 months and there was a tendency for unmet needs to decrease over time. Low available support, high unmet needs and a larger discrepancy between carer and patients' reports of patients' unmet need predicted negative aspects of caregiver burden. These results suggest that health care professionals underestimate available support to patients and both patients and health care professionals underestimate patients' unmet needs in comparison to carers. Carers' reports of patients' unmet needs are important to consider as they were associated with high levels of caregiver burden, including poorer caregiver health. Health care professionals should encourage opportunities for carers to discuss their views of the ongoing needs of patients with advanced cancer.     

Ethical obligations and counseling challenges in cancer genetics

Cancer genetics is creating new practice opportunities in medical genetics, oncology, and primary care. The ethical and counseling challenges of this new area of practice are not unique but sometimes take new form in the context of genetic risk. This article uses cases to explore the issues associated with shared family risk, including competing concerns of family members, duty to warn relatives of genetic risk, and testing of children and other relatives. The ethical obligations of clinicians start with the need to maintain competence in the face of rapidly evolving science. Clinicians should be able to identify patients within their practice who are candidates for genetic testing. When genetic susceptibility to cancer is identified, patients should be offered counseling and follow-up, with referral as appropriate, to ensure delivery of care consistent with current standards. When patients experience barriers to needed health care, clinicians should advocate for their needs. Clinicians must ensure the autonomy and informed decision-making of all members of cancer-prone families. Clinicians must also provide emotional support and accurate information about cancer risks and cancer risk reduction measures, including uncertainties. Teamwork among different specialties is important in addressing these challenges.     

Culture and cancer: the relevance of cultural orientation within cancer edcation programmes

Health professionals are frequently called upon to care for those whose cultural backgrounds are unfamiliar and different from their own. The impact of the family's cultural values and beliefs in their response to a diagnosis of cancer are not emphasized in health professionals' education and consequently, may be underestimated, leading to less effectsivce care. Analysis of the experiences of 12 immigrant families in a western health care setting reveals that culturally embedded meanings are attached to illness, and this frequently affects patient and family responses to care.
For instance, in certain cultures, the occurrence of cancer may be attributed to insufficient use of herbal medicine, an insult to an ancestor ordue to a perceived punishment. Thus, standard medical approaches may not always appeatr releveant to certain groups in multicltural patient populations.
The purpose of this paper is to describe patient and family coping experiences and stress-related factors in Italian, Portuguese and Chinese immigrant families as they have been described during routine family assessment interviews.
It is argued that there is need for an expanded knowledge of health professionals who manage those with cancer so that culturally embedded meanings can be adequately understood. It is maintained that models of patient and family care should allow for possible discrepancies in patient-care giver understandings, and encourage a collaborative approach towards treatment and care. The paper concludes that cultural content must be an integral part of cancer education programmes in order for health professionals to be effective in their practice and care.