Sanchia Aranda

Home caregivers of the person with advanced cancer: an Australian perspective.

&NA; Australian palliative care services are predominantly community based, with an emphasis on enabling the person to live at home for as long as possible. Home care of the person with advanced cancer receiving palliative care in the community depends largely on the availability of a family caregiver. Family caregivers are required to assess, monitor, and deliver complex therapeutic interventions such as pain and symptom control, including the administration and adjustment of complex medication regimens. This article reports a study of 42 family caregivers providing home care to persons with advanced cancer. This study sought to describe a number of caregiver variables that may influence reactions to caring roles and caregiver well‐being. The study found that family caregivers are significantly involved in symptom management, and that they take on almost total responsibility for routine household tasks. In addition, the caregiver role has a negative impact on caregiver health, schedule, anxiety, and energy. However, caregivers find significant meaning in their role and feel relatively well prepared for caregiving. The results of this study support the applicability of the vast international literature on caregiver issues for the Australian setting and suggest the need to move toward development of caregiverfocused nursing interventions.

Meeting the supportive needs of family caregivers in palliative care: challenges for health professionals

Caring for a dying relative is demanding, and family caregivers have acknowledged many unmet needs associated with their caregiver role. Consistently, caregivers of dying patients with cancer have reported that they need more support and information from health care professionals. Moreover, a number of palliative care clinicians and researchers have called for interventions to enhance the support offered to family caregivers. However, before researchers can develop and test palliative care interventions directed to families, it is important to identify barriers that may confront health care professionals with regard to the provision of supportive family care. For new interventions to be feasible they must be applicable within the constraints of current palliative care service delivery environments. This paper provides an account of issues that may impinge on optimal transference of supportive strategies from health care professionals to family caregivers of patients receiving palliative care. By acknowledging these barriers to supportive care, researchers and health care professionals can begin to design and implement interventions that are clinically relevant and more likely to be effective.

Randomized Controlled Trial of an Educational Intervention for Managing Fatigue in Women Receiving Adjuvant Chemotherapy for Early-Stage Breast Cancer

PURPOSE To evaluate the efficacy of a psychoeducational intervention in improving cancer-related fatigue. PATIENTS AND METHODS This randomized controlled trial involved 109 women commencing adjuvant chemotherapy for stage I or II breast cancer in five chemotherapy treatment centers. Intervention group patients received an individualized fatigue education and support program delivered in the clinic and by phone over three 10- to 20-minute sessions 1 week apart. Instruments included a numeric rating scale assessing confidence with managing fatigue; 11-point numeric rating scales measuring fatigue at worst, average, and best; the Functional Assessment of Cancer Therapy-Fatigue and Piper Fatigue Scales; the Cancer Self-Efficacy Scale; the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire C30; and the Hospital Anxiety and Depression Scale. For each outcome, separate analyses of covariance of change scores between baseline (T1) and the three follow-up time points (T2, T3, and T4) were conducted, controlling for the variables corresponding baseline value. RESULTS Compared with the intervention group, mean difference scores between the baseline (T1) and immediate after the test (T2) assessments increased significantly more for the control group for worst and average fatigue, Functional Assessment of Cancer Therapy-Fatigue, and Piper fatigue severity and interference measures. These differences were not observed between baseline and T3 and T4 assessments. No significant differences were identified for any pre- or post-test change scores for confidence with managing fatigue, cancer self-efficacy, anxiety, depression, or quality of life. CONCLUSION Preparatory education and support has the potential to assist women to cope with cancer-related fatigue in the short term. However, further research is needed to identify ways to improve the potency and sustainability of psychoeducational interventions for managing cancer-related fatigue.

Desire for hastened death in patients with advanced disease and the evidence base of clinical guidelines: a systematic review

Purpose: Patients’ desire for hastened death within the context of advanced disease and palliative care is a controversial topic, frequently discussed in the international literature. Much of the discussion has focused on opinion and debate about ethical matters related to hastened death. Not many research studies seem to have specifically targeted why palliative care patients may desire hastened death, and few have focused on clinical guidelines for responding to such requests. Methods: Using a systematic literature review process, we evaluated the research evidence related to the reasons patients express a desire for a hastened death, and the quality of clinical guidelines in this area. Results: Thirty-five research studies met the inclusion criteria related to reasons associated with a desire for hastened death. The factors associated with a desire to die were often complex and multifactorial; however, psychological, existential and social reasons seem to be more prominent than those directly related to physical symptoms, such as pain. Much of the evidence supporting the reasons for these statements is based on: (a) patients’ perceptions of how they may feel in the future, and (b) health professionals’ and families’ interpretations of why desire to die statements may have been made. Several publications provided expert opinion for responding to requests for physician-assisted suicide and euthanasia. In keeping with this limited research base, there is a lack of evidence-based guidelines for clinical care that addresses the desire to die among terminally ill patients. Most literature has focused on discipline specific responses, with minimal exploration of how clinicians might respond initially to a statement from a patient regarding a desire to die. Conclusions: In order to advance understanding of the complex issue of desire for hastened death in the context of palliative care, research should focus on studies with patients who have actually made a desire to die statement and the development of guidelines to help health professionals respond. Direction for research in this area is described.

Nonpharmacologic strategies for managing common chemotherapy adverse effects: a systematic review.

PURPOSE Adverse effects of chemotherapy can be severe and can have a significant impact on a persons quality of life. With chemotherapy treatment increasingly administered in the ambulatory setting, there is a need for patients to be informed about effective self-care strategies to manage treatment adverse effects. Advice for patients needs to be based on evidence. This systematic review provides an overview of the intervention research in this area as well as an effectiveness review of nonpharmacologic (self-care) strategies evaluated in high-quality randomized controlled trials (RCTs). METHODS An extensive literature search was conducted to identify RCTs relating to self-care strategies for reducing nausea/vomiting, constipation, diarrhea, fatigue, hair loss, or mucositis. Relevant studies published in peer-reviewed journals between 1980 and August 2007 were included. Study characteristics, results and methodologic quality were examined. High-quality RCTs were further analyzed to establish the effectiveness of specific self-care strategies. RESULTS The search identified 77 RCTs. Findings from RCTs of reasonable quality provide limited support for cognitive distraction, exercise, hypnosis, relaxation, and systematic desensitization to reduce nausea and vomiting, psycho-education for fatigue, and scalp cooling to reduce hair loss. CONCLUSION Although some strategies seem promising, the quality of the RCTs was generally quite low, making it difficult to draw conclusions about the effectiveness of self-care strategies. Future studies require better design and reporting of methodologic issues to establish evidence-based self-care recommendations for people receiving chemotherapy.

The views of bowel cancer survivors and health care professionals regarding survivorship care plans and post treatment follow up

Goals of workIncreasing numbers of people survive cancer beyond diagnosis and treatment. Many survivors have ongoing needs and they may encounter fragmented, poorly coordinated follow up care. Survivorship care plans (SCP) have been promoted as a key aspect of survivorship care. This study aimed to survey key stakeholders in the care of people with colorectal cancer (survivors, primary care providers and hospital-based healthcare professionals) regarding follow-up and SCP.Patients and methodsIn study 1, cancer survivors completed a questionnaire regarding their follow-up and experiences during survivorship. Participants’ primary care physicians completed a phone interview regarding proposed SCP elements. A subgroup of survivors reviewed a sample SCP and participated in a phone interview regarding this. In study 2, healthcare professionals working with colorectal cancer patients completed a questionnaire regarding follow-up and proposed elements of a SCP.Main resultsTwenty survivors completed the questionnaire, 14 primary care providers completed a phone interview and 12 survivors reviewed the sample SCP.Ninety-five healthcare professionals (30 medical professionals and 65 nurses) completed the questionnaire. There was strong support for core elements of the SCP. Additionally, nurses and survivors expressed support for supportive care and psychosocial elements. There was lack of consensus regarding who should prepare and discuss the SCP.ConclusionsThere is strong support for the development and use of SCPs for bowel cancer survivors. There is some variation in opinion regarding ideal content of the SCP, who might prepare it, and how it might be discussed and utilised.Implications for Cancer SurvivorsOvercoming identified barriers to implementing SCPs for bowel cancer survivors is necessary for high quality cancer care.

Family meetings in palliative care: Multidisciplinary clinical practice guidelines

BackgroundSupport for family carers is a core function of palliative care. Family meetings are commonly recommended as a useful way for health care professionals to convey information, discuss goals of care and plan care strategies with patients and family carers. Yet it seems there is insufficient research to demonstrate the utlility of family meetings or the best way to conduct them. This study sought to develop multidisciplinary clinical practice guidelines for conducting family meetings in the specialist palliative care setting based on available evidence and consensus based expert opinion.MethodsThe guidelines were developed via the following methods: (1) A literature review; (2) Conceptual framework; (3) Refinement of the guidelines based on feedback from an expert panel and focus groups with multidisciplinary specialists from three palliative care units and three major teaching hospitals in Melbourne, Australia.ResultsThe literature review revealed that no comprehensive exploration of the conduct and utility of family meetings in the specialist palliative care setting has occurred. Preliminary clinical guidelines were developed by the research team, based on relevant literature and a conceptual framework informed by: single session therapy, principles of therapeutic communication and models of coping and family consultation. A multidisciplinary expert panel refined the content of the guidelines and the applicability of the guidelines was then assessed via two focus groups of multidisciplinary palliative care specialists. The complete version of the guidelines is presented.ConclusionFamily meetings provide an opportunity to enhance the quality of care provided to palliative care patients and their family carers. The clinical guidelines developed from this study offer a framework for preparing, conducting and evaluating family meetings. Future research and clinical implications are outlined.

Development and pilot testing of a nurse-led posttreatment support package for bowel cancer survivors.

Background: Colorectal cancer (CRC) is the most common cancer affecting both men and women in Australia. The illness and related treatments can cause distressing adverse effects, impact on emotional and psychological well-being, and adversely affect social, occupational, and relationship functioning. Current models of follow-up fail to address the complex needs arising after treatment completion. Strategies to better prepare and support survivors are urgently required. Objectives: This study aimed to develop and pilot test an innovative supportive care program for people with potentially curative CRC. Methods: The SurvivorCare intervention was developed by a multidisciplinary team using 3 key principles: (1) promote patient involvement and engagement; (2) address the specific needs of individual patients, and (3) use evidence-based strategies to promote well-being and reduce treatment sequelae. It also addressed 4 essential components of survivorship planning, defined by the US Institute of Medicine. Ten survivors completed questionnaires and satisfaction interviews before and after receiving the intervention. Results: SurvivorCare comprises survivorship educational materials (booklet, DVD, and question prompt list), a tailored survivorship care plan, a tailored nurse-led end-of-treatment consultation, and 3 follow-up telephone calls. Pilot data demonstrated that survivors considered the intervention appropriate, relevant, and useful. Conclusions: SurvivorCare is a well-received, comprehensive intervention that will now be evaluated in a randomized controlled trial aiming to reduce distress and unmet needs and improve quality of life in CRC survivors. Implications for Practice: If SurvivorCare is shown to be effective, it will be possible to quickly and broadly disseminate this model of care.

To what extent does meaning mediate adaptation to cancer? The relationship between physical suffering, meaning in life, and connection to others in adjustment to cancer

OBJECTIVES This study builds on previous work that explored the lived experience of meaning in advanced cancer. The aims were to explore the associations of suffering (physical and existential distress) and coping (via social support) with psychological distress and global meaning using a battery of instruments among adults attending an Australian metropolitan cancer service (n=100). METHODS The contribution of suffering and coping via social support to psychological distress and meaning were examined using a variety of statistical methods. Multiple regression analyses were conducted to further examine relative contributions to both psychological distress and global meaning. RESULTS Physical and existential distress were found to be positively associated with psychological distress whereas high social support and personal meaning are related to lower levels of psychological distress. Social support was the strongest correlate of global meaning whereas high levels of existential distress were related to lower levels of global meaning. On the basis of this study, it is concluded that the factors related to suffering clearly promote psychological distress, and the reverse is true for global meaning for those living with cancer. SIGNIFICANCE OF RESULTS This study speaks to the clinical complexity of the dynamic experience of suffering and meaning in cancer. We need to better understand the impact of physical suffering and meaning in the lives of this population and to actively work toward the enhancement of social support and connection with others for this group. Optimal palliative and family-centered care blended with therapies that promote a sense of meaning of life lived appear crucial to ameliorate suffering.

Preparing patients for threatening medical treatments: effects of a chemotherapy educational DVD on anxiety, unmet needs, and self-efficacy

Goals of workBased on meta-analyses regarding the preparation of patients for potentially threatening medical procedures, a DVD, incorporating behavioral role modelling, was developed to prepare patients for chemotherapy and assist them to self-manage side effects. It was hypothesized that patients who watched the DVD (vs those who did not) would report (1) lower anxiety; (2) higher self-efficacy related to coping with treatment side effects; (3) fewer supportive care needs; and (4) higher satisfaction with information received. It was further hypothesized that these effects would be stronger in those perceiving their treatment intent to be curative rather than palliative.Materials and methodsQuasi-experimental design using a historical control group was employed. Participants were scheduled to receive their first ever chemotherapy treatment. Group 1 (usual care; n = 50) was prospectively recruited before the release of the DVD and group 2 (DVD plus usual care; n = 50) after the release. Before commencing chemotherapy, all patients completed reliable and valid measures of self-efficacy, anxiety, and supportive care needs. Data was stratified according to perceived treatment intent. Independent sample t tests were performed for each group (curative vs palliative).Main resultsSignificant differences were found between the usual care and intervention groups: for self-perceived curative patients in relation to self-efficacy for seeking social support (p = 0.044), with increased confidence in those watching the DVD, and for self-perceived palliative patients in relation to their satisfaction with information about side effects (p = 0.026), with increased satisfaction in those watching the DVD. Overall, significant differences were found between self-perceived curative vs palliative patients on measures of self-efficacy and supportive care needs, with self-perceived curative patients reporting more confidence and fewer needs.ConclusionsThe educational DVD was considered highly acceptable by patients and was found to increase self-efficacy and reduce supportive care needs. Hence, it is appropriate to give to patients before face-to-face chemotherapy education. Additional pretreatment education is recommended, particularly for self-perceived palliative patients, to reduce their pretreatment anxiety and enhance their confidence in coping with treatment.