From The Editor
Upright and whole: An approach to suffering in the face of death
- William Breitbart
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- 25 October 2007, pp. 347-349
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FROM THE EDITOR
Who needs the concept of spirituality? Human beings seem to!
- WILLIAM BREITBART
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- 22 May 2007, pp. 105-106
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Well, it's finally happened. I've been attacked in the scientific literature (Salander, 2006). Well, just to clarify, it wasn't a personal attack, but rather an attack of the highest and most noble order: an attack on the scientific rigor of the conceptual underpinnings of my recent work on meaning and spirituality in advanced cancer patients (e.g., Breitbart, 2002). To be honest, and a bit less grandiose, it was not an attack against me alone, but rather a set of critical comments aimed at a growing number of investigators who have been publishing papers (a 600% increase over the past 10 years) dealing with religious or spiritual aspects of life-threatening illness (Stefanek et al., 2005). The critical comments by Dr. Par Salander of the Department of Social Welfare, Umea University, Sweden, in a recent issue of the journal Psycho-oncology (Salander, 2006) challenge the need for and the validity of the concept of spirituality.
The Fog in Venice
- WILLIAM BREITBART
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- 27 February 2007, pp. 1-2
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I have just returned from the Eighth World Congress of Psycho-oncology, which was held in Venice on October 18–21, 2006, and attracted the largest number of attendees ever to participate in the annual scientific meeting of the International Psycho-Oncology Society (IPOS). There were close to 1500 participants from 58 countries. Professor Luigi Grassi of the University of Ferrara, the current President of IPOS, was the organizing chair of the Congress, and he and his local scientific committee did a magnificent job of hosting a most diverse and multidisciplinary meeting. A Pre-Congress Psychosocial Academy, consisting of two days of intensive workshops led by outstanding international faculty, was held in beautiful Ferrara, just prior to the start of the Congress in Venice. As the incoming vice president of IPOS, a member of the Psychosocial Academy held in Ferrara, and an active scientific participant in the Eighth World Congress in Venice, it is fair to say that I was pretty busy. In fact, because of all of my activities related to this conference and IPOS, I was away from home and work for nine full days, the longest time I've ever been away from my family. This commitment of an unusually inordinate amount of time to a scientific conference activity made me sit down and evaluate whether the commitment of that much time was really worth it. I was aware, the entire time I attended the conference-related activities, that I needed to come away with at least one important lesson, idea, thought, or inspiration; otherwise I would have felt that I had not spent the time wisely. In other words, I needed the answer to the questions “What brought me to Venice, and where was I going beyond Venice?” Existential questions? Of course!
From The Editor
The five research C's
- Harvey Max Chochinov
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- 24 September 2007, pp. 203-205
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It is naïve to think that successful research, like any lifelong academic pursuit, can be reduced to a pithy, simplistic formula. Yet, after years of attempting to get it right and with still much to learn, it strikes me that successful research is comprised of certain indispensable elements. Based on considerable personal experience and reflection, I humbly offer the “Five Research C's”; their intent is to provide a framework for novice and expert investigators alike, to contemplate some of the basic constituents of empirical research.
Research Article
Improving the quality of life of geriatric cancer patients with a structured multidisciplinary intervention: A randomized controlled trial
- MARIA I. LAPID, TERESA A. RUMMANS,., PAUL D. BROWN, MARLENE H. FROST, MARY E. JOHNSON, MASHELE M. HUSCHKA, JEFF A. SLOAN, JARRETT W. RICHARDSON, JEAN M. HANSON, MATTHEW M. CLARK
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- 22 May 2007, pp. 107-114
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Objective: To examine the potential impact of elderly age on response to participation in a structured, multidisciplinary quality-of-life (QOL) intervention for patients with advanced cancer undergoing radiation therapy.
Methods: Study design was a randomized stratified, two group, controlled clinical trial in the setting of a tertiary care comprehensive cancer center. Subjects with newly diagnosed cancer and an estimated 5-year survival rate of 0%–50% who required radiation therapy were recruited and randomly assigned to either an intervention group or a standard care group. The intervention consisted of eight 90-min sessions designed to address the five QOL domains of cognitive, physical, emotional, spiritual, and social functioning. QOL was measured using Spitzer uniscale and linear analogue self-assessment (LASA) at baseline and weeks 4, 8, and 27.
Results: Of the 103 study participants, 33 were geriatric (65 years or older), of which 16 (mean age 72.4 years) received the intervention and 17 (mean age 71.4 years) were assigned to the standard medical care. The geriatric participants who completed the intervention had higher QOL scores at baseline, at week 4 and at week 8, compared to the control participants.
Significance of results: Our results demonstrate that geriatric patients with advanced cancer undergoing radiation therapy will benefit from participation in a structured multidisciplinary QOL intervention. Therefore, geriatric individuals should not be excluded from participating in a cancer QOL intervention, and, in fact, elderly age may be an indicator of strong response to a QOL intervention. Future research should further explore this finding.
Original Articles
Unexpectedly high prevalence of akathisia in cancer patients
- Chiaki Kawanishi, Hideki Onishi, Daiji Kato, Ikuko Kishida, Taku Furuno, Makoto Wada, Yoshio Hirayasu
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- 25 October 2007, pp. 351-354
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Objectives:
Complications of neuropsychiatric disorders are often detected in cancer patients. Adjustment disorders, depression, or delirium are common psychiatric disorders in these patients, and drug-induced neuropsychiatric problems are sometimes referred for psychiatric consultation. Prochlorperazine and other antiemetic drugs that are phenothiazine derivates are also reported to cause akathisia due to the blockade of the dopamine receptor in the central nervous system, but the prevalence of akathisia in patients undergoing cancer treatment has not been reported. This study seeks to explore the prevalence of such drug-induced syndromes (e.g., akathisia) in this population.
Methods:This present study was a prospective study. The subjects of this study were 483 consecutive patients with cancer who had been referred to the Department of Psychiatry in Kanagawa Prefecture Cancer Center from February 1, 2004, to November 30, 2005. Trained psychiatrists conducted a nonstructured psychiatric interview and neurologic examination to establish psychiatric diagnoses according to DSM-IV and the presence or absence of drug-induced extra pyramidal symptoms. The past and current medications used in their cancer treatment were also examined in detail for an accurate evaluation.
Results:A psychiatric diagnosis was made in 420 (87.0%) of the 483 cancer patients examined, and akathisia, a drug-induced movement disorder, was unexpectedly prevalent among the patients; 20 of 420 (4.8%) patients had developed akathisia from an antiemetic drug, prochlorperazine.
Significance of results:Diagnosing such adverse drug reactions may be difficult due to complicating factors in cancer treatment, and the inner restlessness observed in akathisia is likely to be regarded as a symptom of a primary psychiatric disorder. The authors suggest that oncologists should optimize the use of antiemetic drugs and be aware of akathisia as a possible complication of cancer treatment.
Research Article
Screening for depression in palliative cancer patients attending a pain and symptom control clinic
- Rami A. Sela
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- 24 September 2007, pp. 207-217
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Objective: Depression in palliative care patients is often underrecognized. Screening can increase case recognition. The aims of this study were to assess the prevalence of depression in palliative cancer patients attending a pain and symptom control clinic and to investigate the validity and utility of a depression visual analogue scale in detecting depression in the advanced cancer outpatient population.
Method: One hundred and thirty-two oncology outpatients who came for consultation at a multidisciplinary pain and symptom control clinic were asked and agreed to complete the Brief Zung Self-Rating Depression Scale (BZSDS; Dugan et al., 1998) and depression visual analogue scale (DVAS).
Results: The majority of participants (72%) indicated clinically significant depressive symptoms according to the BZSDS (21% in the “mild” depressive symptoms range, 32% in the “moderate” range, and 19% in the “severe” range). Participants indicated low endorsement rates of items related to overt manifestation of depression (e.g., sadness, tearfulness, irritability, and suicide ideation). The DVAS showed high correlation with the BZSDS (r = .82) and is a potentially useful screening instrument for detecting depressive disorder in palliative care cancer patients.
Significance of results: The results of the study underline the importance of routine screening to detect depressive disorder in palliative care patients to improve their quality of care. The depression visual analogue scale was found to be an effective simple screening tool, easy to administer and use.
Can psychiatric intervention improve major depression in very near end-of-life cancer patients?
- KEN SHIMIZU, TATSUO AKECHI, MASAYA SHIMAMOTO, MASAKO OKAMURA, TOMOHITO NAKANO, TADASHI MURAKAMI, TATSUHIKO ITO, AKIRA OBA, MAIKO FUJIMORI, NOBUYA AKIZUKI, MASATOSHI INAGAKI, YOSUKE UCHITOMI
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- 27 February 2007, pp. 3-9
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Objective: Although depression is a prevalent and burdensome psychiatric problem in end-of-life cancer patients, little is known about its susceptibility to treatment, especially when patients reach very close to the end of life. This study was conducted to evaluate response rate of that end-of-life depression to psychiatric intervention and to assess the feasibility of conventional evidence-based pharmacological therapy for depression.
Methods: The medical records of 20 patients who were referred to the psychiatry division for major depressive disorder and died within 3 months after the referral were reviewed. The Clinical Global Impression–Improvement (CGI-I) Scale was used for each case, and responders were defined as patients whose scores were much or very much improved. All pharmacological treatments were extracted, and the doses of the antidepressant prescribed were compared to their evidence-based-defined therapeutic doses.
Results: Of the 20 patients, seven were responders, but no response was achieved when the survival time was less than 3 weeks. Most patients were treated with antidepressants, but the doses prescribed were far less than the defined doses, especially the doses of the tricyclic antidepressants (TCAs).
Significance of results: These results suggested that patients' survival time largely determines susceptibility to psychiatric treatment, and it is hard to achieve response in patients whose survival time was less than about 1 month. Implementation of conventional evidence-based pharmacological treatment is difficult, especially with TCAs, and various antidepressants, which can be administrated by other routes, are needed when oral intake is impossible.
Urban voices: The quality-of-life experience among women of color with breast cancer
- ANNE M. FATONE, ALYSON B. MOADEL, FREDERICK W. FOLEY, MEGAN FLEMING, LINA JANDORF.
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- 22 May 2007, pp. 115-125
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Objectives: Research on the health-related quality of life (HRQL) among women of color (i.e., Hispanics and African Americans) with breast cancer suggests that they may be at elevated risk for a variety of physical and psychosocial sequelae. The context in which these women perceive, experience, and respond to these HRQL challenges can provide important information for planning a culturally appropriate palliative care treatment plan.
Methods: In an effort to understand the quality of life experience after breast cancer among women of color, this study describes the nature and impact of physical, emotional, and menopausal symptoms among African American (n = 8) and Hispanic (n = 12) breast cancer survivors based on qualitative data gathered through semistructured interviews. Themes were identified and categorized into six HRQL domains: physical (e.g., pain, nausea), psychological (e.g., sadness, irritability), cognitive (e.g., memory problems), sexual (e.g., decreased desire), social/functional (e.g., financial strain, social distress), and spiritual/existential (e.g., increased faith, spiritual coping), with high interrater reliability (kappa = .81).
Results: For both groups, physical issues had a major impact on HRQL, with psychological issues being additionally salient for Hispanic women. Most (88%) African American women voiced positive changes in their faith after diagnosis whereas 50% of Hispanic women viewed faith as an important way of coping with breast cancer.
Significance of results: This research broadens our understanding of the experience of breast cancer among ethnic minority women, and in turn, offers some key directions for guiding the development of culturally tailored HRQL interventions.
Caregiving at the end of life: Perspectives from spousal caregivers and care recipients
- SUSAN JO, KEVIN BRAZIL, LYNNE LOHFELD, KATHLEEN WILLISON
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- 27 February 2007, pp. 11-17
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Objective: The purpose of this study is to examine the perspectives of both the spousal caregiver and care recipient on the caregiving experience in home-based palliative care.
Methods: A qualitative research strategy involving home-based face-to-face interviews with older palliative care patients and their spousal caregivers was used to examine the caregiving experience.
Results: Ten spousal caregivers and care recipient dyads participated in the study. Most informal caregivers viewed caregiving as an extension of the family relationship where caregiving responsibilities evolved over time. Spousal caregivers identified many negative reactions to caregiving, such as fatigue or weariness, depression, anger and sadness, financial stresses, and lack of time. Care recipients acknowledged the emotional and financial strain and expressed concern for their spouses. Both caregivers and care recipients were appreciative of home care services although they identified the need for additional services. They also identified difficulties in communication with formal providers and poor coordination of care among the various services. Both caregivers and care recipients disclosed some challenges with informal supports, but on the whole felt that their presence was positive. Additional positive aspects of caregiving reported by spouses included strengthened relationship with their spouse and discovering emotional strength and physical abilities in managing care.
Significance of results: Health care and social service professionals need to recognize and understand both caregiver and care recipient perspectives if they are to successfully meet the needs of both members of the dyad.
Initial development of a survey tool to detect issues of chemical coping in chronic pain patients
- Kenneth L. Kirsh, Carolyn Jass, Daniel S. Bennett, James E. Hagen, Steven D. Passik
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- 24 September 2007, pp. 219-226
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Objective: Completely compliant drug-taking behavior is associated with opioid therapy that is usually highly beneficial to the pain patient, whereas frequent and severe aberrant behavior is generally associated with therapy that is potentially harmful to the patient and borders on addiction. There is a large group of patients in the middle between these two extremes: those who display aberrant behaviors periodically, who may additionally have a mixed response to opioid therapy, the overall results of which are less than satisfying (often in the domain of functionality) to the clinician. We have used the term chemical coping to describe this vast middle ground and seek to begin a line of research starting with the development of a clinically useful tool to identify this subset of patients.
Methods: A background review is provided to highlight the need for better understanding of chemical coping. In addition, the first steps in creating a chemical coping tool are discussed, including the results of focus group interviews to determine the clarity, understandability of the items, and to assure that they are not objectionable or offensive. A total of 15 patients and 15 professionals completed this phase of the project.
Results: Both the professionals and patients reported that the items were generally clear and understandable. In addition, although the items cover potentially sensitive topics and some were designed with a provocative edge, the respondents had few requested changes. The researchers are moving forward with the next phase of research.
Significance of results: The middle ground between compliant medication use and addiction, which we call chemical coping, is poorly understood and woefully underresearched. Despite this gap in our knowledge base, it is an often observed phenomenon. Creating a tool to identify these characteristics can lead to better treatment outcomes and earlier interventions to help improve compliance with medication regimens.
Parent and child perspectives on physician communication in pediatric palliative care
- Jennifer L. Hsiao, Elana E. Evan, Lonnie K. Zeltzer
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- 25 October 2007, pp. 355-365
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Objective:
Despite growing recognition of the importance of communication with children with life-limiting illnesses and their families, there has been limited research that includes the child's perspective. The purpose of the current study was to identify the aspects of physician communication that children with life-limiting illnesses and their parents perceived to be facilitative or obstructive in pediatric palliative care.
Methods:This qualitative study reports on the first 20 parent and child pairs of pediatric oncology and cardiology patients (mean age 14.25 years, range 9-21 years) with a poor prognosis (physician reported likely <20% chance of survival beyond 3 years) from two children's hospitals and one pediatric hospice in Los Angeles, California. Perspectives on physician communication were elicited from children's and parents' individual narratives, recorded, coded, and analyzed using qualitative grounded theory methodology.
Results:Both children and parents identified five domains of physician communication deemed to be highly salient and influential in quality of care. These included relationship building, demonstration of effort and competence, information exchange, availability, and appropriate level of child and parent involvement. Parents identified coordination of care as another important communication domain. The characteristics of physicians that were deemed most harmful to satisfying communication included having a disrespectful or arrogant attitude, not establishing a relationship with the family, breaking bad news in an insensitive manner, withholding information from parents and losing their trust, and changing a treatment course without preparing the patient and family.
Significance of results:The six positive communication domains are areas for clinicians to recognize and monitor in communicating with children and families in the pediatric palliative care setting. Knowledge of the qualities of communication that are satisfying to and valued by children and their parents have the potential to lead to more effective communication around the difficult decisions faced by physicians, parents, and children with life-threatening conditions.
Factors relating to terminally ill cancer patients' willingness to continue living at home during the early phase of home care after discharge from clinical cancer centers in Japan
- YUKA HIRABAYASHI, MITSUNORI MIYASHITA, MASAKO KAWA, KEIKO KAZUMA, KOHSUKE YAMASHITA, NAOYUKI OKAMOTO
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- 27 February 2007, pp. 19-30
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Objective: To assess the willingness of Japanese terminally ill cancer patients to continue living at home during the early phase of home care after discharge from a Clinical Cancer Center (CCC) in Japan, and to identify factors relating to their willingness to continue living at home.
Methods: A cross-sectional questionnaire survey of a convenient sample of both Japanese terminally ill cancer patients and their caregivers (PFCs) was conducted (n = 294, effective response rate 25.0%). Questionnaires were mailed and medical records were accessed for 73 pairs of respondents, comprising one terminally ill cancer patient and one PFC.
Results: At about 10 days after discharge, 64 patients (88%) wished to continue living at home. A hierarchical logistic regression analysis was performed on the data. It was found that the fewer the medical treatments undergone (OR = 0.20, 95% CI: 0.05–0.72), the higher the patients' perception that their condition was consistent with care at home (OR = 2.77, 95% CI: 1.08–8.62) and with their functional well-being (OR = 1.45, 95% CI: 1.08–2.17). In addition, the higher the caregivers' satisfaction with life (OR = 2.37, 95% CI: 1.15–5.77), the more willing patients tended to be to continue living at home.
Significant of results: The willingness of Japanese terminally ill cancer patients to continue living at home appears to be affected by caregiver status. This indicates a need for discharging facilities to monitor the state of home assistance and to investigate the nature of assistance required for continuing home care.
Prognosticating futures and the human experience of hope
- Sally Thorne, Valerie Oglov, Elizabeth-Anne Armstrong, T. Gregory Hislop
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- 24 September 2007, pp. 227-239
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Objectives: Communication between health care providers and patients with cancer and other chronic diseases typically references probabilities that certain future events will or will not occur. Beyond the context of diagnostic encounters and the transmission of “bad news,” such “prognostic” communications take place in various forms throughout the illness trajectory. It is well known that such information transmitted badly can have devastating psychosocial consequences for patients and their families and, conversely, that difficult information exchanged with sensitivity can lend tremendous support. This study aimed to extend our understanding of how such communications are received and interpreted by patients, so that we might optimally apply what we know about general principles of effective communication within the particularly challenging context of predicting futures.
Methods: We conducted a combined secondary analysis of two prior qualitative studies into patient perceptions of helpful and unhelpful health care communication with 200 cancer patients and 30 persons with chronic illness. These data sets offered a rich resource for comparing perceptions across a range of contextual variables, and secondary analysis focused on future-oriented interactions, including both prognostication and prediction.
Results: The accounts of patients with cancer and chronic illness reveal various ways in which health care communications involving future projections interact with their human experience of hope, powerfully shaping their capacity to make sense of and live with serious illness. They include a synthesis of what patients recommend health care professionals know and understand about this challenging dynamic.
Significance of results: The findings of this study offer a distinct angle of vision onto the various communications that involve future predictions, illuminating a patient perspective with the potential to inform health care communication approaches that are both informative and therapeutic. As such, the study supports a dynamic understanding of the tenuous balance between hope and honesty in the clinical encounter.
Facing uncertainty: The lived experience of palliative care
- Roz Mckechnie, Rod Macleod, Sally Keeling
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- 25 October 2007, pp. 367-376
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Objective:
This qualitative research study listens to the narratives of people experiencing the dying process who attended the Otago Community Hospice, Dunedin, New Zealand.
Methods:Ten people, aged between 51 and 65, were approached; two declined and one died sooner than expected. All were women (although this was not part of the original design) and all had carcinoma. Data for the study was sought through qualitative research interviews, considering the development of each participant's illness in relation to her perception of her embodiment in the palliative care setting, and concluding with questions about what she wants the people who care for and about her to learn from her experience. Consistent with this phenomenological approach, the method of analysis was thematic and interpretive.
Results:The main theme was the uncertainty that all participants felt throughout the diagnostic process and during treatment. Uncertainty, too, was a factor in how they managed their day, whether they would be able to sustain an outing or an activity or not and whether they would be pain free. None were afraid of dying but hoped that when they did die, they would do so comfortably. The relationship with their general practitioners varied. Where fatigue or the effects of medication were not an issue, they could think clearly, but their bodies were experienced as letting them down and limiting their activities. The ideal of “living until you die” was not able to be fulfilled. The increasing approach of social death as they withdrew from their employment and social responsibilities affected them.
Significance of results:Whether one has a “good death” or not is determined not only by the progression and management of the disease process by health professionals, but also by the way in which one is perceived, by self and others. There are no guidelines for the dying role; everybody dies differently and individually.
Unmet needs among adolescent cancer patients: A pilot study
- SUSAN PALMER, ANNE MITCHELL, KATE THOMPSON, MAREE SEXTON
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- 22 May 2007, pp. 127-134
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Objective: Adolescents with cancer pose a unique challenge to current health systems and the professional working with them. Throughout the world, it is increasingly recognized that the needs of this particular group of patients may not be met through existing services within either the pediatric or adult systems. In Australia, this is a new area of research, and little is known about the unmet physical, psychological, and social needs of this patient group. This study reports the outcomes of a focus group conducted to explore these issues.
Methods: Six young people, with a mean age at diagnosis of 17 years and 6 months, participated in a 2-h focus group. A qualitative analytic approach was utilized to examine themes.
Results: The participants identified a number of concerns relating to three broad categories: information provision, treatment processes, and survivorship.
Significance of results: The research findings support previously documented evidence that indicate gaps in cancer services provided to this age group. Importantly, these gaps can be narrowed by improving access to adolescent multidisciplinary teams and introducing specific training for health care professionals.
Experiences of engagement in creative activity at a palliative care facility
- Karen la Cour, Staffan Josephsson, Carol Tishelman, Louise Nygård
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- 24 September 2007, pp. 241-250
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Objective: To investigate the meanings that people with advanced cancer ascribe to engaging in creative activity in palliative occupational therapy.
Methods: Sixteen interviews were conducted with eight participants over a period of 8–12 months. Participants were asked to narrate about their engagement in creative activities at a palliative intervention program. Transcribed interviews were analyzed with a phenomenological method.
Results: Engagement in creative activities was found to ease life in proximity to death for persons with advanced cancer and limited survival time. For the participants, creativity meant that some of the consequences of incurable cancer could be confronted and alternative potentials could be explored and acknowledged. This occurred in an ongoing process of creating alternative ways to deal with life.
Significance of results: Creative activity is a means for participants to develop ways to adapt and cope with declining physical abilities and existential concerns through working with their hands and bodies. This complements the often negative focus in palliative phases of cancer with an understanding of how enriching aspects of life can be maintained. The results highlight how people in palliative care experience their engagement in creative activity in the form of crafts, and how such engagements may be a significant tool for finding alternative ways to handle challenges in ongoing life.
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
- Carrie Lethborg, Sanchia Aranda, Shelley Cox, David Kissane
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- 25 October 2007, pp. 377-388
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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.
Development of a resource for parents with advanced cancer: What do parents want?
- JANE TURNER, ALEXANDRA CLAVARINO, PATSY YATES, MARYANNE HARGRAVES, VERONICA CONNORS, SUE HAUSMANN
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- 22 May 2007, pp. 135-145
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Objective: Parents coping with a diagnosis of advanced cancer experience distress and guilt about the impact of the disease on their children but report that there are few resources specific to advanced disease to guide and support them in discussions with their children. Although some resources have been developed to assist parents with advanced cancer, it appears that these are not widely disseminated.
Methods: To determine the need for a brief resource that could be given to parents at the point of diagnosis of advanced cancer, including its content, in-depth interviews were conducted with eight women with advanced breast cancer.
Results: Women confirmed that they had received minimal assistance from health professionals in discussing the diagnosis with their children, and even when professional counselors were accessed they were not always attuned to the specific needs of parents with advanced cancer. Women felt frustrated that information they did access focused on early disease and lacked the details women felt they needed in coping with advanced cancer. Women felt that there was a need for a brief resource that reassured parents about the impact of the cancer on their children, including practical strategies to help them cope and examples of the ways other parents had responded to difficult questions such as about parental death. A draft resource was developed, critically reviewed by the participants, and their comments incorporated into a final version.
Significance of results: This article expands on the themes highlighted by women as important to assist parents with advanced cancer, including the final resource that was developed.
Struggling in change at the end of life: A nursing inquiry
- DEANNA HUTCHINGS
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- 27 February 2007, pp. 31-39
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Objective: The purpose of this human science nursing inquiry is to explore the meaning of struggling in change for persons at the end of life.
Methods: Guided by Parse's theory of human becoming, a descriptive exploratory method was used to answer the research question: What is the meaning of the experience of struggling in change for persons at the end of life? Eight persons who were living with dying described experiences of struggling in change during face-to-face audiotaped interviews.
Results: A process of analysis–synthesis revealed three themes that are discussed in relation to extant related literature and interpreted in light of the human becoming perspective.
Significance of results: Findings from the study contribute new knowledge about human experience at the end of life from a human science perspective and offer new insights on struggling in change as a rhythmical pattern of living and dying. Implications for palliative practice, research, and education are discussed.