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- Cited by 230
Care for the cancer caregiver: A systematic review
- Allison J. Applebaum, William Breitbart
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- Published online by Cambridge University Press:
- 10 October 2012, pp. 231-252
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Objective:
Informal caregivers (ICs) are relatives, friends, and partners who have a significant relationship with and provide assistance (i.e., physical, emotional) to a patient with a life- threatening, incurable illness. The multidimensional burden that results from providing care to a patient with cancer is well documented, and as a result, a growing number of psychosocial interventions have been developed specifically to address this burden. The purpose of the present study was to characterize the state of the science of psychosocial interventions for informal cancer caregivers.
Method:A comprehensive systematic review of interventions for cancer caregivers was conducted via an electronic literature search of publications between 1980 and January 13, 2011. A final sample of 49 interventions was reviewed in detail.
Results:The interventions, which varied in terms of modality and patient population, fell into the following eight categories: psychoeducation, problem-solving/skills building interventions, supportive therapy, family/couples therapy, cognitive-behavioral therapy, interpersonal therapy, complementary and alternative medicine interventions, and existential therapy. Benefits and disadvantages of each of the categories are discussed, with special attention given to studies that produced null findings.
Significance of results:Beyond specific techniques, structured, goal-oriented, and time-limited interventions that are integrative appear to be the most feasible and offer the greatest benefits for ICs of cancer patients. Future studies are needed to examine the specific benefits and challenges of delivering interventions in alternative modalities (Internet, Skype) so that the needs of a greater number of ICs may be addressed.
- Cited by 179
Breathlessness in cancer and chronic obstructive pulmonary disease: Using a qualitative approach to describe the experience of patients and carers
- SARA BOOTH,, STELLA SILVESTER,, CHRISTOPHER TODD
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- Published online by Cambridge University Press:
- 01 December 2003, pp. 337-344
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Objective: To investigate and document the effects of breathlessness on the everyday lives of patients with cancer and COPD and their carers. This subject has been little researched, although dyspnoea is recognized as a disabling, distressing symptom. The number of breathless people is increasing as patients with all types of cardio-respiratory disease live longer.
Methods: Patients with severe COPD and cancer and their carers were interviewed at home using a semistructured format to record their perceptions of the impact of breathlessness, the help they had received from medical and caring services, and their ideas on how these could be improved.
Results: 10 patients with COPD (6 male) and 10 with cancer (6 male) and their spouses were interviewed. All patients found breathlessness frightening, disabling, and restricting. Patients developed a stoical, philosophical approach in order to live with dyspnoea and the difficulties it imposed: this was also an important way of reducing the emotional impact of breathlessness. Patients' spouses suffered significantly, experiencing severe anxiety and helplessness as they witnessed their partners' suffering and felt powerless to reduce it. The restrictions imposed by breathlessness affected their lives profoundly. Support of all kinds, practical, medical, and psychosocial was highly valued but was provided inconsistently and sporadically. Where help was given it came most frequently from general practitioners (GPs, family physicians) and specialist respiratory nurses.
Significance of results: This study is the first to document the psychosocial needs of carers, which are not adequately recognized or addressed at present. Patients and carers may feel most isolated and need support outside the working hours of most services and future provision needs to reflect this. Patients with cancer experience a more rapid onset of breathlessness. More clinicians need to be educated in the management of chronic breathlessness so known helpful strategies are more widely employed.
- Cited by 168
Cultural and religious considerations in pediatric palliative care
- Lori Wiener, Denice Grady McConnell, Lauren Latella, Erica Ludi
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- 22 May 2012, pp. 47-67
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Objective:
A growing multicultural society presents healthcare providers with a difficult task of providing appropriate care for individuals who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare. This is especially vital when end-of-life care is needed during childhood. There is a dearth of literature addressing cultural considerations in the pediatric palliative care field. As members of a specific culture often do not ascribe to the same religious traditions, the purpose of this article was to explore and review how culture and religion informs and shapes pediatric palliative care.
Method:Comprehensive literature searches were completed through an online search of nine databases for articles published between 1980 and 2011: PsychINFO, MEDLINE®, Journal of Citation Reports-Science Edition, Embase, Scopus, CINAHL®, Social Sciences Citation Index (SSCI), EBSCO, and Ovid. Key terms included: culture, transcultural, spiritual, international, ethnic, customs or religion AND end-of-life, palliative care, death, dying, cancer, or hospice, and children, pediatrics, or pediatric oncology. Reference lists in the retrieved articles were examined for additional studies that fit the inclusion criteria, and relevant articles were included for review. In addition, web-based searches of specific journals were conducted. These included, but were not limited to: Qualitative Health Research, Psycho-Oncology, Journal of Psychosocial Oncology, Journal of Pediatric Psychology, Journal of Pediatric Health Care, Journal of Pediatric Oncology Nursing, Omega, Social Work in Health Care, and Journal of Palliative Medicine.
Results:Thirty-seven articles met eligibility criteria. From these, seven distinct themes emerged that have implications for pediatric palliative care. These include the role of culture in decision-making, faith and the involvement of clergy, communication (spoken and unspoken language), communicating to children about death (truth telling), the meaning of pain and suffering, the meaning of death and dying, and location of end-of-life care.
Significance of results:The review of the literature provides insight into the influence of religion and how culture informs lifestyle and shapes the experiences of illness, pain, and end-of-life care. Recommendations for providing culturally sensitive end-of-life care are offered through the framework outlined in the Initiative for Pediatric Palliative Care Quality Improvement Project of 2002. Cultural traditions are dynamic, never static, and cannot be generalized to all families. Guidelines to aid in approaches to palliative care are provided, and providers are encouraged to define these important differences for each family under their care.
- Cited by 159
Cancer family caregivers during the palliative, hospice, and bereavement phases: A review of the descriptive psychosocial literature
- Anna-Leila Williams, Ruth McCorkle
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- Published online by Cambridge University Press:
- 15 August 2011, pp. 315-325
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Objective:
Because caregiving to an adult with cancer is a dynamic process, a caregiver's perceived burden and psychosocial concerns may be different at different phases of the patient's disease. There is evidence of escalation in caregiver anxiety, depression, and psychological distress as the patient's functional status declines and as the patient nears death. The purpose of this review was to organize the literature in a meaningful way that can potentially capture the unique needs of caregivers to patients receiving palliative and/or hospice care, and caregivers who are in the post-death bereavement phase.
Method:A systematic review was conducted. Major databases were searched for non-intervention descriptive studies that included psychosocial variables of family caregivers to adults with cancer during the palliative, hospice, or bereavement phases.
Results:The 19 studies reviewed were conducted in six countries and varied considerably by samples, outcome measures, methodologies, and analytic approaches. Despite limiting to the palliative, hospice, and bereavement phases, inconsistent results were found for key variables, such as age, gender, and relationship to the patient. When patient–caregiver dyad analysis was conducted, with rare exception, there was mutuality between the patient's condition and the caregiver's response. Across the 19 studies, 89 unique instruments were used, almost half of which were study specific with no psychometric testing reported.
Conclusions/significance of research:As a direct consequence of assuming the caregiver role, cancer family caregivers in the palliative, hospice, and bereavement phases are at increased risk for physical and mental morbidity. Often, the psychological burden of the caregiver exceeds that of the critically ill patient. It is possible that distressed caregivers have a deleterious influence on patient well-being. This review demonstrates the need to develop research standards, especially regarding measurement instruments, so that caregiver research can mature and interventions can be developed to support family caregivers.
- Cited by 152
Measuring quality of life at the end of life: Validation of the QUAL-E
- KAREN E. STEINHAUSER, ELIZABETH C. CLIPP, HAYDEN B. BOSWORTH, MAYA MCNEILLY, NICHOLAS A. CHRISTAKIS, CORRINE I. VOILS, JAMES A. TULSKY
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- Published online by Cambridge University Press:
- 01 March 2004, pp. 3-14
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Objectives: To validate the QUAL-E, a new measure of quality of life at the end of life.
Methods: We conducted a cross-sectional study to assess the instrument's psychometric properties, including the QUAL-E's associations with existing measures, evaluation of robustness across diverse sample groups, and stability over time. The study was conducted at the VA and Duke University Medical Centers, Durham, North Carolina, in 248 patients with stage IV cancer, congestive heart failure with ejection fraction ≤20%, chronic obstructive pulmonary disease with FEV1 ≤ 1.0 l, or dialysis-dependent end stage renal disease. The main outcome measures included QUAL-E and five comparison measures: FACIT quality of life measure, Missoula-VITAS Quality of Life Index, FACIT-SP spirituality measures, Participatory Decision Making Scale (MOS), and Duke EPESE social support scales.
Results: QUAL-E analyses confirmed a four-domain structure (25 items): life completion (α = 0.80), symptoms impact (α = 0.87), relationship with health care provider (α = 0.71), and preparation for end of life (α = 0.68). Convergent and discriminant validity were demonstrated with multiple comparison measures. Test–retest reliability assessment showed stable scores over a 1-week period.
Significance of results: The QUAL-E, a brief measure of quality of life at the end of life, demonstrates acceptable validity and reliability, is easy to administer, performs consistently across diverse demographic and disease groups, and is acceptable to seriously ill patients. It is offered as a new instrument to assist in the evaluation of the quality and effectiveness of interventions targeting improved care at the end of life.
- Cited by 150
The project ENABLE II randomized controlled trial to improve palliative care for rural patients with advanced cancer: Baseline findings, methodological challenges, and solutions
- Marie Bakitas, Kathleen Doyle Lyons, Mark T. Hegel, Stefan Balan, Kathleen N. Barnett, Frances C. Brokaw, Ira R. Byock, Jay G. Hull, Zhongze Li, Elizabeth Mckinstry, Janette L. Seville, Tim A. Ahles
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- Published online by Cambridge University Press:
- 13 February 2009, pp. 75-86
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Objective:
There is a paucity of randomized controlled trials (RCTs) to evaluate models of palliative care. Although interventions vary, all have faced a variety of methodological challenges including adequate recruitment, missing data, and contamination of the control group. We describe the ENABLE II intervention, methods, and sample baseline characteristics to increase intervention and methodological transparency, and to describe our solutions to selected methodological issues.
Methods:Half of the participants recruited from our rural U.S. comprehensive cancer center and affiliated clinics were randomly assigned to a phone-based, nurse-led educational, care coordination palliative care intervention model. Intervention services were provided to half of the participants weekly for the first month and then monthly until death, including bereavement follow-up call to the caregiver. The other half of the participants were assigned to care as usual. Symptoms, quality of life, mood, and functional status were assessed every 3 months until death.
Results:Baseline data of 279 participants were similar to normative samples. Solutions to methodological challenges of recruitment, missing data, and “usual care” control group contamination are described.
Significance of results:It is feasible to overcome many of the methodological challenges to conducting a rigorous palliative care RCT.
- Cited by 131
Virtual reality as a distraction technique for pain and anxiety among patients with breast cancer: A randomized control trial
- Eslam Bani Mohammad, Muayyad Ahmad
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- Published online by Cambridge University Press:
- 10 September 2018, pp. 29-34
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Objective
The goal of this study was to assess the effectiveness of immersive virtual reality (VR) distraction technology in reducing pain and anxiety among female patients with breast cancer.
MethodA randomized control trial design was used with a sample of 80 female patients with breast cancer at a specialized cancer center in Jordan. Participants were randomly assigned into intervention and comparison groups.
ResultThe study findings showed that one session of the immersive VR plus morphine made a significant reduction in pain and anxiety self-reported scores, compared with morphine alone, in breast cancer patients.
Significance of resultsImmersive VR is an effective distraction intervention for managing pain and anxiety among breast cancer patients. Using immersive VR as an adjuvant intervention is more effective than morphine alone in relieving pain and anxiety; furthermore, VR is a safe intervention more than pharmacological treatment.
- Cited by 128
Randomized clinical trial on cognitive therapy for depression in women with metastatic breast cancer: Psychological and immunological effects
- JOSÉE SAVARD, SÉBASTIEN SIMARD, ISABELLE GIGUÈRE, HANS IVERS, CHARLES M. MORIN, ELIZABETH MAUNSELL, PIERRE GAGNON, JEAN ROBERT, DANIÈLE MARCEAU
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- Published online by Cambridge University Press:
- 27 September 2006, pp. 219-237
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Objective: Depression is particularly prevalent in patients with advanced cancer. Cognitive therapy (CT) is an empirically supported treatment for depression in the general population. However, efficacy remains to be demonstrated in patients with advanced cancer. A prior controlled trial of CT in a group format showed improvements in depression, mood disturbance, and self-esteem; however, these effects were not maintained over time. Studies examining the efficacy of individual format CT interventions that may ensure more long-term maintenance of benefits are necessary. This study assessed the efficacy of CT for depression administered individually in women with metastatic breast cancer and its effect on immune function.
Method: Forty-five women were randomly assigned to either individual CT or to a waiting-list control (WLC) condition. CT was composed of eight weekly sessions of CT and three booster sessions administered at 3-week intervals following the end of treatment.
Results: Patients treated with CT had significantly lower scores on the Hamilton Depression Rating Scale at posttreatment compared to untreated patients. Pooled data from both groups indicated significant reductions of depressive symptoms from pre- to posttreatment, as well as reduction of associated symptoms including anxiety, fatigue, and insomnia symptoms. These effects were well sustained at the 3- and 6-month follow-up evaluations. CT for depression did not appear to have a significant impact on immune functioning.
Significance of results: Findings of this study support the efficacy of CT for depression in this population and suggest that the administration of individual and booster sessions after treatment termination may be instrumental in sustaining the treatment effects over time.
- Cited by 124
The delirium subtypes: A review of prevalence, phenomenology, pathophysiology, and treatment response
- DANIELE STAGNO, CHRISTOPHER GIBSON, WILLIAM BREITBART
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- Published online by Cambridge University Press:
- 04 April 2005, pp. 171-179
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Delirium is a highly prevalent disease in the elderly and postoperative, cancer, and AIDS patients. However it is often misdiagnosed and mistreated. This may be partly due to the inconsistencies of the diagnosis itself. Delirium is best defined currently by an association of cognitive impairment and arousal disturbance. Three subtypes (hyperactive, hypoactive, mixed) receive a definition in the literature, but those definitions may vary from author to author according to the importance they give either to the motoric presentation of the delirium or to the arousal disturbance. Our aim is to point out the inconsistencies we found in the literature, but also to identify different paths that have been explored to solve them, that is, the suggestion to emphasize the arousal disturbances in defining the subtypes instead of the motoric presentations, which seem to be more fluctuating, and because of the fluctuating course of the disease to extend the observation over a period of time, which may improve the accuracy of the diagnosis. This is not without importance from a clinical standpoint. Subtypes of delirium may be explained by different pathophysiologic mechanisms, which remain partly unexplained, and may respond to specific treatments. There is a trend to isolate core symptoms (disorientation, cognitive deficits, sleep–wake cycle disturbance, disorganized thinking, and language abnormalities) so as to distinguish them from secondary symptoms that may be correlated with the different etiologies. Our contribution is also to challenge, with new data, the accepted belief that psychotic features are quite rare in the hypoactive type of delirium. We demonstrate that delusions and perceptual disturbances, although less frequent, are present in more than half of the patients with hypoactive delirium. The psychotic features are clearly correlated with a highly prevalent rate of patients', spouses', and caregivers' distress. The mixed subtype of delirium seems to have the worst prognosis, the hyperactive showing the best prognosis. The treatment of the agitated delirious patient is also more consensual. Haloperidol remains the gold standard in the treatment of delirium regardless of the clinical presentation, but the literature provides several alternatives that may prove more specific and have less adverse effects (atypical antipsychotics, psychostimulants, anesthetics).
- Cited by 119
Factors influencing older adults to complete advance directives
- Gloria J. Alano, Renee Pekmezaris, Julia Y. Tai, Mohammed J. Hussain, Jose Jeune, Betina Louis, Gabriel El-Kass, Muhammad S. Ashraf, Roopika Reddy, Martin Lesser, Gisele P. Wolf-Klein
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- Published online by Cambridge University Press:
- 27 September 2010, pp. 267-275
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Objective:
The purpose of this study was to determine the factors which influence advance directive (AD) completion among older adults.
Method:Direct interviews of hospitalized and community-dwelling cognitively intact patients >65 years of age were conducted in three tertiary teaching settings in New York. Analysis of AD completion focused on its correlation with demographics, personal beliefs, knowledge, attitudes, and exposure to educational media initiatives. We identified five variables with loadings of at least 0.30 in absolute value, along with five demographic variables (significant in the univariate analyses) for multiple logistic regression. The backward elimination method was used to select the final set of jointly significant predictor variables.
Results:Of the 200 subjects consenting to an interview, 125 subjects (63%) had completed ADs. In comparing groups with and without ADs, gender (p < 0.0002), age (p < 0.0161), race (p < 0.0001), education (p < 0.0039), and religion (p < 0.0104) were significantly associated with having an AD. Factors predicting AD completion are: thinking an AD will help in the relief of suffering at the end of life, (OR 76.3, p < 0.0001), being asked to complete ADs/ or receiving explanation about ADs (OR 55.2, p < 0.0001), having undergone major surgery (OR 6.3, p < 0.0017), female gender (OR 11.1, p < 0.0001) and increasing age (76–85 vs. 59–75: OR 3.4, p < 0.0543; <85 vs. 59–75: OR 6.3, p < 0.0263).
Significance of results:This study suggests that among older adults, the probability of completing ADs is related to personal requests by health care providers, educational level, and exposure to advance care planning media campaigns.
- Cited by 110
Reducing the risk of burnout in end-of-life care settings: The role of daily spiritual experiences and training
- JASON M. HOLLAND, ROBERT A. NEIMEYER
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- 03 March 2006, pp. 173-181
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Objective: Individuals in the helping professions are subject to unique stressors that may lead to burnout, and research has shown that those who work with dying or bereaved individuals might be particularly at-risk. This study explores how factors such as spirituality and level of training might buffer the stress of working with terminally ill clients and their families.
Method: A total of 80 medical and mental health practitioners attending palliative care seminars were surveyed, with each completing validated measures of daily spiritual experiences and caregiver burnout, as well as assessments of demographic factors, their general education and training experiences specific to working in end-of-life care and bereavement settings.
Results: Findings indicate that daily spiritual experiences might mitigate physical, cognitive, and emotional forms of burnout in the workplace. In addition, a negative correlation was found between the amount of end-of-life training received and burnout in the physical and cognitive domains. However, training was not related to professionals' level of emotional exhaustion.
Significance of the research: Results reinforce a growing literature on the salutary effects of spirituality, and underscore its relevance as one possible form of constructive coping for professionals attending to the needs of the dying and bereaved. The study carries further implications for how the stresses of such work might be ameliorated by enhanced training efforts, as well as creative facilitation of diverse spiritual expressions (e.g., inclusive forms of ritual recognition of loss) in the workplace.
- Cited by 108
The “good death”: An integrative literature review
- Laura Cottrell, Wendy Duggleby
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- Published online by Cambridge University Press:
- 06 January 2016, pp. 686-712
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Objective:
The “good death” is a dynamic concept and has evolved over time to become a “revivalist” good death: a planned, peaceful, and dignified death, at home, surrounded by family members. As the “good death” continues to evolve, the key questions are: How do cultural perceptions of death and dying change? What are the forces that shape Western attitudes and beliefs around death and dying? And how does the “good death” discourse frame the dying experience in contemporary society? The purpose of this manuscript is to describe the underlying discourse in the literature on the “good death” in Western societies.
Method:An integrative literature review of data from experimental and nonexperimental sources in PubMed, CINAHL, PsychINFO, and SocINDEX of 39 articles from 1992 to 2014.
Results:Four main themes emerged from reviewing 39 articles on the “good death”: (1) the “good death” as control, (2) the wrong “good death,” (3) the threatened “good death,” and (4) the denial of dying.
Significance of Results:Evolving in response to prominent social attitudes and values, the contemporary “good death” is a powerful, constraining discourse that limits spontaneity and encourages one way to die. Social, political, and demographic changes now threaten the stability of the “good death”; dying is framed as an increasingly negative or even unnecessary process, thus marginalizing the positive aspects of dying and rendering dying absent, invisible.
- Cited by 108
A systematic review of religious beliefs about major end-of-life issues in the five major world religions
- Rajshekhar Chakraborty, Areej R. El-Jawahri, Mark R. Litzow, Karen L Syrjala, Aric D. Parnes, Shahrukh K. Hashmi
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- Published online by Cambridge University Press:
- 19 January 2017, pp. 609-622
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Objective:
The objective of this study was to examine the religious/spiritual beliefs of followers of the five major world religions about frequently encountered medical situations at the end of life (EoL).
Method:This was a systematic review of observational studies on the religious aspects of commonly encountered EoL situations. The databases used for retrieving studies were: Ovid MEDLINE In-Process & Other Non-Indexed Citations, Ovid MEDLINE, Ovid EMBASE, Ovid PsycINFO, Ovid Cochrane Central Register of Controlled Trials, Ovid Cochrane Database of Systematic Reviews, and Scopus. Observational studies, including surveys from healthcare providers or the general population, and case studies were included for review. Articles written from a purely theoretical or philosophical perspective were excluded.
Results:Our search strategy generated 968 references, 40 of which were included for review, while 5 studies were added from reference lists. Whenever possible, we organized the results into five categories that would be clinically meaningful for palliative care practices at the EoL: advanced directives, euthanasia and physician-assisted suicide, physical requirements (artificial nutrition, hydration, and pain management), autopsy practices, and other EoL religious considerations. A wide degree of heterogeneity was observed within religions, depending on the country of origin, level of education, and degree of intrinsic religiosity.
Significance of results:Our review describes the religious practices pertaining to major EoL issues and explains the variations in EoL decision making by clinicians and patients based on their religious teachings and beliefs. Prospective studies with validated tools for religiosity should be performed in the future to assess the impact of religion on EoL care.
- Cited by 107
Chemotherapy and cognitive deficits: Mechanisms, findings, and potential interventions
- Christian J. Nelson, Nina Nandy, Andrew J. Roth
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- 24 September 2007, pp. 273-280
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“Chemobrain” is the phenomenon of cognitive decline some patients may experience after chemotherapy. Current research indicates the cognitive domains that may be most impacted by chemotherapeutic agents are visual and verbal memory, attention, and psychomotor functioning. These cognitive deficits can have an effect on a patient's ability to make informed treatment decisions, pursue occupational or academic pursuits, and his or her overall quality of life. The potential mechanisms that cause this disruption remain largely unknown, although contributing factors could be vascular injury and oxidative damage, inflammation, direct injury to neurons, autoimmune responses, chemotherapy-induced anemia, and the presence of the apolipoprotein E ε4 (APOE ε 4) gene. Interventions to help alleviate the symptoms of chemobrain could include nonpharmacologic treatment such as antioxidants and cognitive-behavioral therapy. In addition, patients may benefit from pharmacologic treatment such as recombinant human erythropoietin and psychostimulant drugs such as methylphenidate. It is important to note that the proposed therapeutics treat the symptoms of chemobrain based on the hypothesized mechanisms. Therefore, a detailed understanding of the mechanisms that cause chemobrain, as well as a comprehension of what specific cognitive domains are impacted, is crucial in developing more specific treatments to improve patients' cognitive functioning and overall quality of life.
- Cited by 106
Opening end-of-life discussions: How to introduce Voicing My CHOiCES™, an advance care planning guide for adolescents and young adults
- Sima Zadeh, Maryland Pao, Lori Wiener
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- Published online by Cambridge University Press:
- 13 March 2014, pp. 591-599
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Objective:
Each year, more than 11,000 adolescents and young adults (AYAs), aged 15–34, die from cancer and other life-threatening conditions. In order to facilitate the transition from curative to end-of-life (EoL) care, it is recommended that EoL discussions be routine, begin close to the time of diagnosis, and continue throughout the illness trajectory. However, due largely to discomfort with the topic of EoL and how to approach the conversation, healthcare providers have largely avoided these discussions.
Method:We conducted a two-phase study through the National Cancer Institute with AYAs living with cancer or pediatric HIV to assess AYA interest in EoL planning and to determine in which aspects of EoL planning AYAs wanted to participate. These results provided insight regarding what EoL concepts were important to AYAs, as well as preferences in terms of content, design, format, and style. The findings from this research led to the development of an age-appropriate advance care planning guide, Voicing My CHOiCES™.
Results:Voicing My CHOiCES™: An Advanced Care Planning Guide for AYA became available in November 2012. This manuscript provides guidelines on how to introduce and utilize an advance care planning guide for AYAs and discusses potential barriers.
Significance of Results:Successful use of Voicing My CHOiCES™ will depend on the comfort and skills of the healthcare provider. The present paper is intended to introduce the guide to providers who may utilize it as a resource in their practice, including physicians, nurses, social workers, chaplains, psychiatrists, and psychologists. We suggest guidelines on how to: incorporate EoL planning into the practice setting, identify timepoints at which a patient's goals of care are discussed, and address how to empower the patient and incorporate the family in EoL planning. Recommendations for introducing Voicing My CHOiCES™ and on how to work through each section alongside the patient are provided.
- Cited by 105
Art therapy improves coping resources: A randomized, controlled study among women with breast cancer
- INGER ÖSTER, ANN-CHRISTINE SVENSK, EVA MAGNUSSON, KARIN EGBERG THYME, MARIE SJÕDIN, STURE ÅSTRÖM, JACK LINDH
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- Published online by Cambridge University Press:
- 29 June 2006, pp. 57-64
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Objective: Women with breast cancer suffer from considerable stress related to the diagnosis, surgery, and medical treatment. It is important to develop strategies to strengthen coping resources among these women. Research in art therapy has shown outcomes such as an increase in self-esteem and cohesion, significant improvement in global health, and a decrease in anxiety and depression. The aim of the present article was to describe the effects of an art therapy intervention program on coping resources in women with primary breast cancer.
Method: In this article, we report some of the results from a study including 41 women, aged 37–69 years old, with nonmetastatic primary breast cancer, referred to the Department of Oncology at Umeå University Hospital in Sweden for postoperative radiotherapy. The women represented various socioeconomic backgrounds. They were randomized to a study group (n = 20) with individual art therapy for 1 h/week during postoperative radiotherapy or to a control group (n = 21). The article focuses on changes in coping resources, as measured by the Coping Resources Inventory (CRI) before and 2 and 6 months after the start of radiotherapy. The study protocol was approved by the Umeå University Ethical Committee at the Medical Faculty (archive number 99–386).
Results: There was an overall increase in coping resources among women with breast cancer after taking part in the art therapy intervention. Significant differences were seen between the study and control groups in the social domain on the second and third occasions. Significant differences were also observed in the total score on the second occasion.
Significance of results: This study shows that individual art therapy provided by a trained art therapist in a clinical setting can give beneficial support to women with primary breast cancer undergoing radiotherapy, as it can improve their coping resources.
- Cited by 104
Spiritual issues and needs: Perspectives from patients with advanced cancer and nonmalignant disease. A qualitative study
- ELIZABETH GRANT, SCOTT A. MURRAY, MARILYN KENDALL, KIRSTY BOYD, STEPHEN TILLEY, DESMOND RYAN
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- Published online by Cambridge University Press:
- 19 July 2005, pp. 371-378
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Objective: Health care professionals and policy makers acknowledge that spiritual needs are important for many patients with life-limiting illnesses. We asked such patients to describe their spiritual needs and how these needs may impinge on their physical, psychological, and social well-being. Patients were also encouraged to explain in what ways their spiritual needs, if they had any, could be addressed.
Methods: We conducted two qualitative interviews, 3 months apart, with 20 patients in their last year of life: 13 patients with advanced cancer and 7 with advanced nonmalignant illness. We also interviewed each patient's general practitioner. Sixty-six interviews were tape-recorded, transcribed, and analyzed.
Results: Patients' spiritual needs centered around their loss of roles and self-identity and their fear of dying. Many sought to make sense of life in relation to a nonvisible or sacred world. They associated anxiety, sleeplessness, and despair with such issues, which at times resulted in them seeking support from health professionals. Patients were best able to engage their personal resources to meet these needs when affirmed and valued by health professionals.
Significance of results: Enabling patients to deal with their spiritual needs through affirmative relationships with health professionals may improve quality of life and reduce use of health resources. Further research to explore the relationship between spiritual distress and health service utilization is indicated.
- Cited by 104
Psychological morbidity and quality of life in women with advanced breast cancer: A cross-sectional survey
- BRENDA GRABSCH, DAVID M. CLARKE, ANTHONY LOVE, DEAN P. McKENZIE, RAYMOND D. SNYDER, SIDNEY BLOCH, GRAEME SMITH, DAVID W. KISSANE
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- Published online by Cambridge University Press:
- 29 June 2006, pp. 47-56
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Objective: Our purpose was to determine the frequency of psychiatric morbidity and to assess the quality of life of women with advanced breast cancer.
Methods: The 227 women in the sample were recruited in Melbourne, Australia, and were interviewed (prior to intervention) for a randomized controlled trial of supportive-expressive group therapy. The main outcome measures were DSM–IV psychiatric diagnoses plus quality of life data based on the EORTC QLQ-C30 (core) and QLQ-BR23 (breast module) instruments.
Results: Forty-two percent of the women (97/227) had a psychiatric disorder; 35.7% (81) of these had depression or anxiety or both. Specific diagnoses were minor depression in 58 women (25.6%), major depression in 16 (7%), anxiety disorder in 14 (6.2%), and phobic disorder in 9 (4%). Seventeen (7.5%) women had more than one disorder. In terms of quality of life, one-third felt less attractive, one-quarter were dissatisfied with their body image, and, in most, sexual interest had waned. Menopausal symptoms such as hot flashes affected less than one-third, whereas symptoms of lymphedema were experienced by 26 (11.5%).
Significance: Women with advanced breast cancer have high rates of psychiatric and psychological disturbance. Quality of life is substantially affected. Clinicians need to be vigilant in monitoring psychological adjustment as part of a comprehensive biopsychosocial approach.
- Cited by 104
Early integration of palliative care in hospitals: A systematic review on methods, barriers, and outcome
- Karen Marie Dalgaard, Heidi Bergenholtz, Marianne Espenhain Nielsen, Helle Timm
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- Published online by Cambridge University Press:
- 13 March 2014, pp. 495-513
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Objective:
According to the World Health Organization (WHO), palliative care (PC) should be available to everyone suffering from life-threatening diseases and should be started early on in the illness trajectory. However, PC is often initiated much later and is restricted to cancer patients. There is a need for more knowledge about how early PC can be implemented in clinical practice. The purpose of our study was to document the best evidence on methods for early identification (EI) of palliative trajectories in cancer, chronic heart failure (CHF), and chronic obstructive pulmonary disease (COPD) populations, and to identify preconditions for early integration of general PC in hospitals and outcomes for patients and relatives.
Method:A comprehensive systematic review of methods, preconditions, and outcomes was conducted via an electronic literature search of publications between 2002 and September 2012. A final sample of 44 papers was reviewed in detail.
Results:Our study identified disease-specific and general methods for EI of patients who might benefit from PC. Prognostication of end-stage disease based on (holistic) clinical judgment, prognostic factors, and/or care needs are the most frequently recommended methods. A number of interacting disease-, staff-, user-, and organization-specific barriers need to be overcome in order to implement early integration of PC in clinical practice. Early integration of PC may lead to better symptom management, prolonged survival, and better quality of life.
Significance of Results:No methods can be recommended for routine clinical practice without further validation. There is an urgent need to develop and evaluate methods based on the holistic assessment of symptoms or needs. The barriers to early integration of PC are most extensive with regard to CHF and COPD. Professional training and education are recommended to facilitate early implementation of PC. The evidence about outcome is sparse and mostly relates to cancer populations receiving specialized PC.
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A systematic review of ovarian cancer and fear of recurrence
- Melissa Ozga, Carol Aghajanian, Shannon Myers-Virtue, Glynnis McDonnell, Sabrina Jhanwar, Shira Hichenberg, Isabel Sulimanoff
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- Published online by Cambridge University Press:
- 02 March 2015, pp. 1771-1780
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Objective:
To assess demographic, medical, and psychological factors that are associated with fear of recurrence (FCR) in ovarian cancer patients.
Method:We searched PubMed, EMBASE, Cochrane, CINAHL, and PsycINFO. For PubMed, a search using Medical Subject Headings (MeSH) was run, as well as a text-word search from 1990 to July of 2014. The search terms used consisted of ovarian terms, fear terms, and recurrence/progression themes. Title and abstract reviews were conducted by two independent reviewers to determine eligibility, and discrepancies were decided by a third reviewer. Full-text reviews of potentially eligible articles were conducted by the review team, which met regularly to ensure the reliability of eligibility ratings across all articles.
Results:A total of 15 articles met our inclusion criteria. Nine were quantitative studies that utilized a cross-sectional design, and the other six included three qualitative studies, two small intervention studies, and one study that utilized content analysis to explore written correspondence among ovarian cancer patients. FCR was reported as a significant concern for both older and younger women at both early and advanced stages. Women were distressed about recurrence at various times during their treatment and posttreatment. FCR was noted to be prevalent around cancer follow-up examinations. Many women reported not receiving adequate support for recurrence. FCR was also shown to be linked in some way to hopelessness, faith/spirituality, and posttraumatic stress disorder (PTSD). FCR was also linked to patients' anxiety about death and dying and uncertainty about the future of their medical health.
Significance of Results:This review demonstrates that FCR is prevalent in the ovarian cancer population. Moreover, cancer recurrence fears are not adequately assessed or treated. More information is needed on the factors that may be related to women's fears about recurrence of ovarian cancer. In addition, a validated measure of FCR among ovarian cancer patients as well as a treatment intervention are needed.