Original Articles
Psychiatric disorders and stress factors experienced by staff members in cancer hospitals: A preliminary finding from psychiatric consultation service at National Cancer Center Hospitals in Japan
- Mariko Asai, Nobuya Akizuki, Tatsuo Akechi, Tomohito Nakano, Ken Shimizu, Shino Umezawa, Asao Ogawa, Yutaka Matsui, Yosuke Uchitomi
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- Published online by Cambridge University Press:
- 27 September 2010, pp. 291-295
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Objective:
The purpose of this study is to identify psychiatric disorders and stress factors experienced by staff members in cancer hospitals who were referred to psychiatric consultation service, and to investigate the association between psychiatric disorders and stress factors.
Method:A retrospective descriptive study using clinical practice data on staff members referred to psychiatric consultation service, obtained for 8 years, was conducted at two National Cancer Center Hospitals in Japan. Psychiatric disorders were identified according to DSM-IV. Stress factors were extracted from a chief complaint at the initial visit in medical charts, using a coding approach, and grouped as job stress or personal stress. The frequencies of the stress factors were determined by two coders who were unaware of the categorized procedure. Fisher's exact test was used to determine the association between psychiatric disorders and stress factors.
Results:Of 8077 psychiatric consultations, 65 (1%) staff members were referred. The most common psychiatric disorder was adjustment disorder (n = 26, 40%), followed by major depression (n = 17, 26%). Eight stress factors were identified from 76 meaning units and were grouped into five job stresses and three personal stresses. Of the five job stresses, four were most frequently experienced in adjustment disorders, and “failure to adapt to job environmental change” was significantly associated (p = 0.014). Two of the three personal stresses were most frequently experienced in psychiatric disorders other than major depressive disorder and adjustment disorders, and “suffering from mental disease” was significantly associated (p = 0.001).
Significance of results:We found that very few staff members were provided with psychiatric consultation service. A comprehensive support system for job stress might be needed to prevent adjustment disorders, as those are suggested to be the most common psychiatric disorders among staff members in cancer hospitals.
Art therapy with cancer patients during chemotherapy sessions: An analysis of the patients' perception of helpfulness
- Silvia Forzoni, Michela Perez, Angelo Martignetti, Sergio Crispino
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- Published online by Cambridge University Press:
- 18 February 2010, pp. 41-48
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Objective:
Art therapy has been shown to be helpful to cancer patients at different stages in the course of their illness, especially during isolation for bone marrow transplantation, during radiotherapy treatment, and after treatment. The aim of this study is twofold: (1) to assess whether patients during chemotherapy sessions perceive art therapy as helpful and (2) to outline in which way art therapy is perceived as helpful.
Method:157 cancer patients attending an Oncology Day Hospital (Siena, Italy) met the art therapist during their chemotherapy sessions. The art therapist used the same art therapy technique with each patient during the first encounter (“free collage”); afterward the relationship would evolve in different ways according to the patients' needs. A psychologist interviewed a randomized group of 54 patients after the chemotherapy treatment using a semistructured questionnaire.
Results:Out of the 54 patients, 3 found art therapy “not helpful” (“childish,” “just a chat,” “not interesting”). The other 51 patients described their art therapy experience as “helpful.” From patients' statements, three main groups emerged: (1) art therapy was perceived as generally helpful (e.g., “relaxing,” “creative”; 37.3%), (2) art therapy was perceived as helpful because of the dyadic relationship (e.g., “talking about oneself and feeling listened to”; 33.3%), and (3) art therapy was perceived as helpful because of the triadic relationship, patient–image–art therapist (e.g., “expressing emotions and searching for meanings”; 29.4%).
Significance of results:These data have clinical implications, as they show that art therapy may be useful to support patients during the stressful time of chemotherapy treatment. Different patients use it to fulfil their own different needs, whether it is a need to relax (improved mood) or to talk (self-narrative) or to visually express and elaborate emotions (discovering new meanings). Some illustrations of patients using the art therapy process to fulfill these three different needs are provided.
Comparison of experienced burnout symptoms in specialist oncology nurses working in hospital oncology units or in hospices
- Luca Ostacoli, Marco Cavallo, Marco Zuffranieri, Manuela Negro, Erica Sguazzotti, Rocco Luigi Picci, Patrizia Tempia, Pietro La Ciura, Pier Maria Furlan
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- Published online by Cambridge University Press:
- 28 September 2010, pp. 427-432
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Objective:
This study aimed to clarify the differential contributions of situational and individual factors to burnout symptoms experienced by two independent groups of specialist oncology nurses working in oncology hospital units or in hospices.
Method:The study involved a group of specialist oncology nurses working in hospital oncology units (n = 59) and a group of specialist oncology nurses working in hospices (n = 33). Participants were invited to provide demographic data, and indicate the clinical setting in which they worked and their work experience; the Italian versions of the Maslach Burnout Inventory (MBI) (a measure of burnout symptoms), the Hospital Anxiety and Depression Scale (HADS) (a measure of anxiety and depression), and the Attachment Style Questionnaire (ASQ) (a measure of relational style) were then administered.
Results:The two groups of nurses were well matched for age, work experience, and levels of anxiety and depression. Regarding their relational style, the two groups only differed significantly on two subscales of the ASQ (i.e. “Confidence” and “Relationships as Secondary”). The two groups significantly differed in the levels of all burnout symptoms investigated (emotional exhaustion, depersonalization, and personal achievement), with nurses working in hospital units showing higher levels of burnout symptoms. Interestingly, multivariate regression analyses showed that the institutional factor (clinical setting in which nurses worked) clearly emerged as the only factor that influenced the level of all burnout symptoms, whereas the contribution of individual factors was less significant.
Significance of results:These findings help to clarify the differential contributions of institutional and individual factors to burnout symptoms in specialist oncology nurses, and corroborate the need for interventions to contain nurses' burnout symptoms.
Results of a pilot investigation into a complex intervention for breathlessness in advanced chronic obstructive pulmonary disease (COPD): Brief report
- Morag Farquhar, Irene J. Higginson, Petrea Fagan, Sara Booth
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- 23 March 2010, pp. 143-149
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Objective:
Breathlessness is the most common devastating symptom of advanced chronic obstructive pulmonary disease (COPD). The Breathlessness Intervention Service (BIS) is a multidisciplinary service that uses both pharmacological and non-pharmacological evidence-based interventions to reduce the impact of the symptom. The results of a Phase II evaluation of the service are reported.
Method:Pretest - posttest analysis of non-randomized data was performed for 13 patients with severe advanced COPD referred to BIS.
Results:Mean VAS-Distress scores (primary outcome measure) decreased (improved) for the group between baseline and follow up suggesting a clinically significant improvement: 6.88 (SD = 2.50) to 5.25 (SD = 2.99). At an individual level, 11 of the 13 patients showed a decrease in their distress due to breathlessness, and for eight of these this was clinically significant (range of all decreases 0.3–7.1 cm). Changes in secondary outcome measures are also reported.
Significance of results:The Breathlessness Intervention Service appears to reduce distress due to breathlessness among patients with advanced COPD. A Phase III fully-powered randomized controlled trial is warranted.
Multiple evaluation of a hospital-based palliative care consultation team in a university hospital: Activities, patient outcome, and referring staff's view
- Tomoyo Sasahara, Mitsunori Miyashita, Megumi Umeda, Hitomi Higuchi, Junko Shinoda, Masako Kawa, Keiko Kazuma
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- 18 February 2010, pp. 49-57
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Objective:
Although the number of hospital-based palliative care consultation teams (PCCTs) is rapidly increasing in Japan, there is limited information available concerning the activities and usefulness of PCCT in the country. The aim of this study is to clarify the activities, patient outcome, and referring staff's view of an established PCCT in Japan.
Method:This was a prospective study to follow patients referred to a PCCT for 28 days over a 1-year period. Patients were assessed by the Support Team Assessment Schedule–Japanese version (STAS-J) and EORTC QLQ C-30 at the time of referral and on days 7, 14, and 28. A staff survey was implemented using a questionnaire after each observation period.
Results:Of 180 patients referred, 53 patients were eligible for the study. Although the median of the number of the reasons for referral was 1, the PCCT provided several kinds of support: pain management, 94%; emotional support for the patient, 49%; and emotional support for the family, 36%. On day 7 after referral, of the items of STAS-J and the EORTC QLQ C-30 subscales, only insomnia improved significant whereas “other physical symptoms” and constipation were significantly exacerbated. In the staff survey, of the 98 respondents, more than 90% considered the effect of the PCCT as “excellent” or “good” and were satisfied with the support provided.
Significance of results:This study showed that the PCCT performed comprehensive assessments on referred patients and provided extra support. No patient's QOL 1 week after referral was improved with the exception of insomnia. Referring staff highly evaluated the activities of the PCCT. In the evaluation of PCCTs, further research about the variation of clinical activities of PCCTs, their applicability, and benefit is needed.
What does care mean? Perceptions of people approaching the end of life
- Anna L. Janssen, Roderick D. MacLeod
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- 28 September 2010, pp. 433-440
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Objective:
This project sought to better understand the nature of medical care from the perspective of people approaching the end of life.
Method:We asked 13 people who were dying (and a family member for each) to describe their care and the ways in which doctors' behavior fosters or inhibits the feeling that they were cared for as individuals. Interviews took a phenomenological approach. Data analysis was thematic.
Results:Examples used by participants as evidence of care varied widely and showed the potentially complex nature of quality care. Participants' descriptions reflect the many ways people can impart and experience care as unique individuals in the medical context. They also provide clear examples of what uncaring behaviour looks and feels like.
Significance of results:The importance of care was clearly illustrated through descriptions of the benefits of caring behavior and the negative consequences of uncaring behavior. In order to demonstrate the empathy and compassion expected and assumed of medical graduates and engender a feeling of being cared for among their patients, doctors need to invite and develop a relationship with those they are caring for. There needs to be a focus on each member of the caring relationship primarily as individual human beings.
Emerging adulthood and cancer: How unmet needs vary with time-since-treatment
- Brett Millar, Pandora Patterson, Natacha Desille
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- 23 March 2010, pp. 151-158
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Objective:
The impact of a cancer experience during emerging adulthood (18–25 years of age) is an under-studied phenomenon, with research on young people typically focussing on children or adolescents. Needs-based research on this population is even scarcer. This study sought to ascertain the most commonly-unmet needs of emerging adults with cancer, in various stages of time-since-treatment, and to investigate links to psychological functioning.
Method:Using an earlier version of a needs-based questionnaire, presently under development, as well as additional items developed specifically for this age group, the ten most unmet needs were determined for 63 emerging adults in each of the following three groups: those on or within one year since treatment; those between one and five years since treatment; and those beyond five years since treatment. Psychological functioning was measured by the Depression, Anxiety and Stress Scales (DASS-21).
Results:On average, participants rated 17.7 of the 132 needs as unmet. The 10 most unmet needs for each group generated a distinct picture of how needs change as time-since-treatment increases. For those at or within one year since treatment, there were a number of unmet needs directly related to health care provision and the hospital experience. For those whose treatment was more than one year previous, the most unmet needs were more focussed on emotional/psychological issues, particularly related to survivorship and life direction. Positive correlations were found between the number of unmet needs and levels of anxiety and stress.
Significance of results:The results of the present study provide quantitative needs-based information about emerging adults with cancer, in the context of their treatment situation. This enables health care providers to better support the emerging adult with cancer in ways that are age-appropriate and time-sensitive. The persisting levels of unmet needs and psychological distress beyond five years since treatment underscore the importance of long-term follow-up and support.
Evaluation of a British child bereavement service: The user's perspective
- Anne Lydon, Jean Hennings, Bernadette Ryan Woolley
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- Published online by Cambridge University Press:
- 27 September 2010, pp. 297-303
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Objective:
This article summarizes the findings from a 3-year independent evaluation of a regional Child Bereavement Service (CBS). The service was commissioned by a Primary Care Trust in Northern England, and funded by a British cancer charity, Macmillan Cancer Support. The need for a CBS was recognized by members of a Palliative Care Group who identified a gap in local services for bereaved children, who may be susceptible to short/long-term psychiatric/psychological disorders. The service was established to offer support for professionals working with bereaved children and their family.
Method:Interventions provided by the service included pre/post bereavement support, individual work with the child and/or family, and group work. An evaluation (2004–2007), was conducted to inform service development utilizing semi-structured interviews with parents/carers of service users (n = 20), and semi-structured interviews with healthcare professionals (n = 8). Interviews were recorded, transcribed verbatim, and analyzed using grounded theory methods.
Results:Referrals were higher than expected. Sixty per year were anticipated; however, in the first year alone, there were 255 referrals. Health and social care professionals who attended training courses, provided by the CBS staff, expressed confidence in providing bereavement support themselves, or by making appropriate referrals to the CBS. Parents and carers welcomed a service specifically for their children.
Significance of results:The CBS is a viable organization that supports bereaved children as expressed in this article.
Health care staff's opinions about existential issues among patients with cancer
- Maria Browall, Christina Melin-Johansson, Susann Strang, Ella Danielson, Ingela Henoch
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- Published online by Cambridge University Press:
- 18 February 2010, pp. 59-68
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Objective:
The objective of this study was to explore health care staff's opinions about what existential issues are important to patients with cancer and staff's responsibility when existential issues are raised by patients.
Method:Four focus group interviews were conducted with health care staff (N = 23) at an in-patient hospice, on an oncology ward, on a surgical ward, and with a palliative home health care team. The focus group interviews focused on two questions, first, about health care staff's opinions about patients' important existential questions and, second, about health care staff's responsibility when existential issues are raised by the patient. The interviews were taperecorded, transcribed verbatim, and analyzed by qualitative content analysis into subcategories and categories.
Results:Four categories and 11 subcategories emerged from the first question. The first category, “life and death,” was based on joy of living and thoughts of dying. The second category “meaning,” consisted of acceptance, reevaluation, hope, and faith. The third category, “freedom of choice,” consisted of responsibility and integrity, and the fourth and last category, “relationships and solitude,” consisted of alleviation, dependency, and loss. One category emerged from the second question about the health care staff's responsibility, “to achieve an encounter,” which was based on the subcategories time and space, attitudes, and invitation and confirmation.
Significance of results:One strength of this study was that the findings were fairly congruent in different settings and in different geographical areas. Health care staff were aware of the importance of existential issues to patients. The existential issues, mentioned by health care staff, are similar to findings from studies conducted among patients, which is another strength of the present study. Health care staff are also confident about how to act when these issues are raised by the patients. The challenge for the future is to implement the findings from this study among health care staff in different settings.
A psychosocial cancer phone center staffed by professional psychologists as an integral part of the standard process of care: Its utility during the course of illness
- Paola Arnaboldi, Francesca N. Lupo, Luigi Santoro, Luigia Rubio, Angela Tenore, Ilaria Solinas, Fabrizio Delle Grotti, Vito Ferri, Nicasia Teresi, Stefano Zurrida, Florence Didier
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- Published online by Cambridge University Press:
- 27 September 2010, pp. 305-312
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Objective:
Major cancer centers cannot ignore psychosocial patient needs that have a significant impact on the process of adjustment to cancer and on compliance to treatments. We introduced a new service, the Gigi Ghirotti Psychosocial Cancer Phone Center (GGPCPC), staffed by professional psychologists, for use by our patients and their relatives. This article investigates its feasibility as a support delivery vehicle for patients in their follow-up phase, and also investigates patients' sense of abandonment related to their care setting.
Method:A close collaboration was set up between GGPCPC psychologists and European Institute of Oncology (IEO) psychologists. Education and awareness sessions regarding the importance of such a source of psychological support were conducted by IEO psychologists with nurses, secretaries, and receptionists. IEO psychologists input monthly data, recorded on specific paper-tabs by GGPCPC psychologists for each call received by the phone center between March 2007 and March 2009, into a SPSS database.
Results:Four hundred and thirty individuals contacted the center mainly to receive psychological support during their treatment phase, when they visited IEO for treatment sessions. Multiple indicators suggest that this telephone support program was feasible and provided support to a broad range of cancer patients. Patients seemed to prefer it to face-to-face psychological support during their treatment-phase.
Significance of results:The GGPCPC was demonstrated to be an efficacious support and information delivery vehicle for patients and relatives during the illness course.
Discussing the transition to palliative care: Evaluation of a brief communication skills training program for oncology clinicians
- Michelle N. Grainger, Sue Hegarty, Penelope Schofield, Vicki White, Michael Jefford
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- Published online by Cambridge University Press:
- 28 September 2010, pp. 441-447
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Objective:
Discussing the transition from active anti-cancer treatment to palliative care can be difficult for cancer patients and oncology health professionals (OHP). We developed a brief communication skills workshop to assist OHP with these conversations, and examined satisfaction with the workshop and perceived confidence regarding these discussions.
Method:Interactive workshops were conducted by trained facilitators and included cognitive, behavioral, and experiential components. The major component of the workshop involved role-plays with trained actors (simulated patients). Participants completed an evaluation questionnaire.
Results:Sixty-two OHP participated in workshops. Overall, participants were highly satisfied with the workshop content and format. All participants felt the workshop provided relevant practical information, and >80% thought that participation benefited their work. Over 98% said that the workshop had increased confidence in their communication skills.
Significance of results:Participants were very satisfied with the workshop, and thought that participation increased confidence in communicating about the transition to palliative care. Dissemination of this model of communication skills training seems warranted.
Hospice volunteer as patient advocate: A trait approach
- Carol A. Savery, Nichole Egbert
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- 23 March 2010, pp. 159-167
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Objective:
The purpose of this study is to examine traits of hospice volunteers that facilitate their success in this informal caregiving role, with the larger goal of alleviating the family caregiver burden and providing additional support to the hospice patient. To achieve this goal, a new scale was developed to tap into how hospice volunteers view their patient advocacy role.
Method:Participants were 136 trained hospice volunteers from the Midwest who had direct contact with hospice patients. Volunteers mailed anonymous surveys that included measures of argumentativeness, locus of control, attitudes toward patient advocacy, and key demographic items. A new scale was developed to measure patient advocacy by hospice volunteers called the Hospice Volunteer as Patient Advocate.
Results:Submitting this scale to exploratory factor analysis, two factors emerged: duty as patient advocate and support of patient rights. After performing a multiple regression analysis, results showed that female volunteers who were high in internal locus of control were more likely to perceive that volunteers have a duty as patient advocates. Younger volunteers with more years of volunteer experience, higher levels of internal locus of control, and lower external locus of control were more likely to support patient rights.
Significance of results:The findings of this study could be used to formalize hospice volunteers' role as patient advocates, thus better utilizing them as committed, caring communicators and improving patient-centered care at end-of-life.
Symptoms experienced by cancer patients during the first year from diagnosis: Patient and informal caregiver ratings and agreement
- Alexander Molassiotis, Y. Zheng, L. Denton-Cardew, R. Swindell, L. Brunton
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- 27 September 2010, pp. 313-324
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Objective:
The aim of this study was to explore the symptom experience of patients with cancer, identify changes in symptoms over time, and explore the congruence of symptom reports between patients and their informal caregivers.
Method:This was a prospective longitudinal evaluation of symptoms over 1 year from start of treatments (T1) using the Memorial Symptom Assessment Scale. Assessments and follow up took place at 3 months (T2), 6 months (T3) and 12 months (T4). A heterogeneous sample of 100 patients with cancer participated, providing 325 assessments over time. Furthermore, 82 caregivers also participated, providing 238 dyadic patient–caregiver assessments over the same time.
Results:The most commonly occurring, and by far most distressing, symptom was “lack of energy.” Common symptoms reported were lack of concentration, difficulties sleeping, shortness of breath, cough, pain, dry mouth, and feeling drowsy. Symptom occurrence and distress improved over time, particularly from T2 to T3 (p < 0.05), but the “chronicity” of some generic symptoms was notable. Caregivers tended to overestimate occurrence and distress compared to patients, particularly in symptoms of psychological nature; κ statistics had a highest coefficient of 0.45, suggesting moderate agreement between patients and caregivers at best.
Significance of results:More attention needs to be paid to the commonly reported symptoms by patients, as they have the potential of impacting on quality of life (QOL). As patient–caregiver reports had moderate agreement, effort should be directed to improving this agreement, as caregivers are often communicating patient symptoms to clinicians.
Looming cognitive style and quality of life in a cancer cohort
- Tomer T. Levin, John Riskind, Yuelin Li
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- 28 September 2010, pp. 449-454
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Objective:
Looming cognitive styles (LCS) bias the velocity of potential threats and have been implicated in anxiety and depression vulnerability. This study aims to explore their contribution to impaired quality of life (QOL), beyond that of depression and anxiety, in a cancer cohort.
Method:In a cross-sectional design, an ambulatory chronic lymphocytic leukemia (CLL) cohort completed a psychological battery that included the Beck Depression and Anxiety Inventories, the SF-36 Health Survey, the Functional Assessment of Chronic Illness Therapy (FACT), the Looming Cognitive Style Questionnaire (LCSQ), and the Looming Cancer measure.
Results:The Looming Cancer measure correlated significtly with overall QOL (FACT-G, p = 0.005). This effect was largely due to the contribution of emotional QOL (Mental Component Score: SF-36, p = 0.001; FACT-emotional, p = 0.001) and functional QOL (FACT-functional, p = 0.001). Looming, unlike anxiety and depression, did not correlate with a worse physical QOL (Physical Component Score: SF-36, FACT-physical). Looming did not impact on social QOL. Hierarchical regression analysis showed that looming predicted 5.4% of the varience on the FACT-emotional, 5.1% on the Mental Component Score (SF-36), and 9.3% on the mental health subscale (SF-36), above and beyond the varience predicted by a constellation of psychosocial factors (including age, marital status, education, income) and the combined effect of depression and anxiety
Significance of results:LCS predicts worse emotional and functional QOL, above and beyond the contribution of anxiety, depression, and other psycho-social variables. This suggests that it makes a unique contribution to a worse QOL. Nevertheless, the looming construct still remains primarily a research tool in psycho-oncology at this time.
Factor analysis and internal consistency evaluation of the FAMCARE Scale for use in the long-term care setting
- Keri L. Rodriguez, Nichole K. Bayliss, Emily Jaffe, Susan Zickmund, Mary Ann Sevick
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- 24 March 2010, pp. 169-176
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Objective:
The FAMCARE Scale was originally designed to measure family satisfaction with advanced cancer care. The current study evaluated the instrument's psychometric qualities when used in the long-term care (LTC) setting.
Method:In a prospective cohort study in 2004, the 20-item instrument was administered via telephone to family members of 51 patients receiving LTC in Veterans Affairs facilities. Satisfaction scores on a 5-point Likert scale were used for factor analysis and internal consistency evaluation.
Results:Although 16 patients were in geriatric palliative care and 35 were in nursing home care, scores of their family members did not vary based on care unit. The total satisfaction score was high, with a mean (SD) of 44.7 (11.9) and a Cronbach alpha of 0.94. Inter-item correlations were low for care availability items (range, 0.01–0.59). Two items—availability of a hospital bed and availability of nurses to the family—had low eigenvalues (0.26 and 0.18, respectively) and weak correlations with the total score (0.23 and 0.16, respectively).
Significance of results:In the LTC setting, FAMCARE appears to have good internal consistency, but it may be preferable to exclude the two items with weak correlations and to use a 10-point visual analog scale.
Do palliative patients and carers agree about patients' psychological functioning?
- Julie Ann Robinson, Gregory Brian Crawford
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- 18 February 2010, pp. 69-74
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Objective:
Palliative care clinicians and researchers often seek information about patients from informants. This research examines the extent of agreement between information from patients and family caregivers who were asked to serve as collateral sources of information about the patient.
Method:Sixty-six patients with advanced cancer and their family caregivers participated in the study. Two measurement contexts were examined: Direct observation of patients' cognitive performance (Mini-Mental State Examination) was compared with carers' subjective reports about patients' everyday cognition (Cognitive Decline subscale of the Psychogeriatric Assessment Scale), and subjective reports about patient depression were compared between patients and carers who completed parallel forms of the same scale (Geriatric Depression Scale and Geriatric Depression Scale–Collateral Source, respectively). The relationship between patient-completed and carer-completed measures was examined in four ways: the correlation between total scores in the sample, agreement about the prevalence of impaired functioning and of specific symptoms in the sample, agreement concerning whether particular patients showed impaired functioning, and agreement about the presence or absence of a specific symptom for a particular patient.
Results:Although most measures of agreement showed that information provided by patients and carers was related, the magnitude of discrepancies was substantial.
Significance of results:There was no empirical justification for substituting information from a collateral source for information provided by the patient for any of the measures of agreement for either cognition or depression. The use of information from collateral sources is most appropriate when information from the patient is likely to be incomplete or inaccurate, when insight into caregivers' needs or understanding is sought, and when using a multi-informant approach to assessment.
Making sense of health and illness in palliative care: Volunteers' perspectives
- Andrée Sévigny, S. Robin Cohen, Serge Dumont, Annie Frappier
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- 27 September 2010, pp. 325-334
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Objective:
To encourage communication and contribute to the palliative care movement's need for interdisciplinary care, this article offers to explore the stance of volunteers on two fundamental concepts, “health” and “illness,” as well as their related understanding of “palliative care.” Volunteers' understandings are then compared with the concepts put forth by the Canadian Hospice Palliative Care Association (CHPCA) in its “Model to Guide Hospice Palliative Care.”
Method:Focus groups with volunteers, and individual interviews with coordinators from five selected palliative care community action organizations from across Canada, are used. A total of 65 participants from three Canadian provinces were interviewed.
Results:Participants view illness as a subjective, multidimensional, and transformative experience that requires multiple adjustments. It is an impediment to personal equilibrium and a challenge for the terminally ill and their close ones. Health, on the other hand, is a complex phenomenon that consists of physical, psychological, social, and spiritual well-being. For participants, health is most often embodied by a person's capacity to adjust to their challenging circumstances. Both volunteers and coordinators see palliative care as an alternative approach to care that centers on helping patients and their families through their ordeal by offering comfort and respite, and helping patients enjoy their life for as long as possible.
Significance of Results:Participants describe illness as a destabilizing loss and palliative care as a means to compensate for the numerous consequences this loss brings; their actions reflect these principles and are compatible with the CHPCA model.
Differences in quality of life modalities give rise to needs of individual support in patients with ALS and their next of kin
- Anneli G. Olsson, Inga Markhede, Susann Strang, Lennart I. Persson
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- 18 February 2010, pp. 75-82
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Objective:
The aim of this study was to examine health-related quality of life (HRQoL), individual QoL, anxiety and depression in patients with amyotrophic lateral sclerosis (ALS) and their next of kin in relation to patients' physical function over time.
Methods:35 patients and their next of kin were studied using the Short Form-36 Health Survey (SF-36), Schedule for Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), and Hospital Anxiety and Depression Scale (HADS) and patients also by the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised and the Norris scale every fourth to sixth month, one to four times.
Results:Changes were found over time in both patients and their next of kin in the SF-36 but not in the SEIQoL-DW or HADS. Patients rated worse than their next of kin in the SF-36 physical subscales and next of kin rated worse than the patients in the global QoL score in SEIQoL-DW. Health, hobbies, and total relations were important areas in the SEIQoL-DW among all participants, but some important areas also differed between the patients and their next of kin. In most important areas among the pairs, the next of kin estimated their functioning/satisfaction worse than patients estimated their functioning/satisfaction.
Significance of results:There were few changes over time in the QoL among the participants. Although most of the estimates in patients and their next of kin were equal, there were also some differences. These results emphasize the importance of support for both patients and their next of kin and that support ought to be given on both individual bases and together in pairs. The SEIQoL-DW might give signposts in the care through the course of the disease about what should be focused on to increase satisfaction of the important areas of life and might help the person to find coping strategies to handle his or her life situation.
Does chemotherapy reduce stress?
- Francisco Gil, G. Costa, F.J. Pérez
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- Published online by Cambridge University Press:
- 28 September 2010, pp. 455-460
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Objective:
The purpose of this study was to assess the psychological care needs of cancer patients throughout the healthcare process: after diagnosis, after medical treatment (surgery, chemotherapy, radiotherapy) and during follow-up.
Method:A total of 703 ambulatory cancer patients were assessed in this study. The inclusion period was from April 1, 2005 to April 30, 2007. The first psychological scales used were the 14-item Hospital Anxiety and Depression Scales (HADS), which has two sub-scales for anxiety (7 items) and for depression (7 items). All patients with a score ≥14 were assessed through the Structured Clinical Interview for Psychiatric Disorder (SCID-I) of the DSM-IV. All data were compared with sociodemographic and medical characteristics.
Results:Of the 703 cancer patients in the study, 349 were men and 354 women, with a mean age of 53 years. The median time between the cancer diagnosis and our clinical interview was 6 months (range, 12 days to 190 months). Overall, the screening tools indicated that one in four patients needed psychological care. The most common psychiatric diagnosis was adjustment disorder (129 cases), whereas 10 patients were diagnosed with major depression. Using a HADS cut-off score of >7 for anxiety and depression, 28% and 17% of patients, respectively, were classified as “possible clinical cases.” Risk factors for distress included age <65 years, asthenia, constipation, and a low performance status. However, chemotherapy treatment was found to be a protector against distress in cancer patients.
Significance of Results:Chemotherapy treatment is interpreted by the patients as a protector against cancer, thereby reducing distress levels.
Influences on place of death in Botswana
- Mark Lazenby, Tony Ma, Howard J. Moffat, Marjorie Funk, M. Tish Knobf, Ruth McCorkle
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- Published online by Cambridge University Press:
- 23 March 2010, pp. 177-185
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- Article
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Objective:
There is an emerging body of research aimed at understanding the determinants of place of death, as where people die may influence the quality of their death. However, little is known about place of death for people of Southern Africa. This study describes place of death (home or hospital) and potential influencing factors (cause of death, age, gender, occupation, and district of residence).
Method:We collected the death records for years 2005 and 2006 for all adult non-traumatic deaths that occurred in Botswana, described them, and looked for associations using bivariate and multivariate analyses.
Results:The evaluable sample consisted of 18,869 death records. Home deaths accounted for 36% of all deaths, and were predominantly listed with “unknown” cause (82.3%). Causes of death for hospital deaths were HIV/AIDS (49.7%), cardiovascular disease (13.8%), and cancer (6.6%). The mean age at the time of all deaths was 53.2 years (SD = 20.9); with 61 years (SD = 22.5) for home deaths and 48.8 years (SD = 18.6) for hospital deaths (p < .001). Logistic regression analysis revealed the following independent predictors of dying at home: unknown cause of death; female gender; >80 years of age; and residing in a city or rural area (p < .05).
Significance of Results:A major limitation of this study was documentation of cause of death; the majority of people who died at home were listed with an unknown cause of death. This finding impeded the ability of the study to determine whether cause of death influenced dying at home. Future study is needed to determine whether verbal autopsies would increase death-certificate listings of causes of home deaths. These data would help direct end-of-life care for patients in the home.