Editorial
Dignity and Meaning in Supportive Care
- William Breitbart
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- Published online by Cambridge University Press:
- 02 January 2019, pp. 641-642
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Original Article
Meaning-centered psychotherapy integrated with elements of compassion: A pilot study to assess feasibility and utility
- Francisco Gil, Clara Fraguell, Llúcia Benito, Anna Casellas-Grau, Joaquin T. Limonero
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- Published online by Cambridge University Press:
- 01 October 2018, pp. 643-647
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Objective
The main objective of this study is to establish emotional benefits of promoting and maintaining meaning in palliative care patients in the final weeks of life and to assess the benefits of including the compassion and self-compassion constructs in the Meaning-Centered Psychotherapy Model (MCP).
MethodFifty-one cancer inpatients were randomly assigned to one of the three brief interventions for cancer patients in the end of life: the MCP-palliative care version, the MCP-compassionate palliative care (MCP-CPC), or standard counseling. Feasibility, acceptability, and utility were assessed in each condition. Likewise, patients’ opinions about the effectiveness of interventions’ elements were also collected.
ResultOf the 51 patients that began one of the three interventions, 30 completed the three-session interventional program, as well as the pre- and posttreatment questionnaires. No significant differences were found between therapies in terms of the positive feedback of patients regarding the structure, focus, and length of the all three psychotherapeutic interventions. The most helpful elements or constructs reported by patients were meaning, self-compassion, compassion, legacy, and courage and commitment.
Significance of resultsAn abbreviated version of MCP-CPC tailored to the needs of palliative care patients appears to be feasible, acceptable, and helps patients cope with the process of dying. Further research in bigger samples is needed to establish evidence for the feasibility, acceptability, and utility of a brief MCP-CPC for palliative care patients in their last weeks of life. More proposals of further elements are also needed to improve the results. Such research can create or refine previous treatment approaches which improve the quality of life and psychological distress in patients with advanced cancer.
Dignity in cancer patients with a life expectancy of a few weeks. Implementation of the factor structure of the Patient Dignity Inventory and dignity assessment for a patient-centered clinical intervention: A cross-sectional study
- Andrea Bovero, Nader Alessandro Sedghi, Rossana Botto, Chiara Tosi, Valentina Ieraci, Riccardo Torta
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- Published online by Cambridge University Press:
- 07 February 2018, pp. 648-655
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Objective
Hospice is a favored setting for dignity care. Studies on dignity dimension in end-of-life patients are growing. The Patient Dignity Inventory (PDI) is a tool that can lead to interesting information on dignity-related aspects of suffering. The study aimed to investigate dignity among end-of-life cancer patients, by examining the Italian version of the PDI factor structure and assessing the relationship between dignity and other patients’ psychosocial and spiritual variables to improve a patient-centered clinical practice.
MethodThis is a cross-sectional study. Data were collected using a battery of self-administered validated rating scales. The sample included 127 hospice patients with a life expectancy of a few weeks and a Karnofsky Performance Status ≤40. Factor structure and concurrent validity of PDI and correlations between dignity and anxious and depressive symptomatology, quality of life, demoralization, personal coping styles, spiritual well-being, and spiritual daily experience were analyzed.
ResultFactor analysis highlighted a five-factor solution, accounting for 60% of the overall variance. The factors were labeled Psychological Distress, Social Support, Physical Symptoms and Dependency, Existential Distress, and Loss of Purpose/Meaning. Dignity assessment evidenced that self-blame coping style, emotional and physical well-being, and depression were the loss of dignity significant predictors (R2 = 0.605; p < 0.01).
Significance of resultsThe results point out the intercultural validity of the PDI and empower an accurate detection of dignity-related distress sources in the daily clinical practice. Personality traits seem to have an active role in the loss of dignity, whereas spirituality is confirmed to be positively involved in dignity enhancement.
Development and evaluation of a six-day training program in supportive oncology research
- William F. Pirl, Joseph A. Greer, Elyse Park, Steven A. Safren, Lauren Fields, Lisa Wood, Lara Traeger, Areej El-Jawahri, Bradley Zebrack, Jennifer S. Temel
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- Published online by Cambridge University Press:
- 28 December 2017, pp. 656-661
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Objective
Early career investigators have few opportunities for targeted training in supportive oncology research. To address this need, we developed, implemented, and evaluated an intensive, six-day workshop on methods in supportive oncology research for trainees and junior faculty across multiple disciplines.
MethodA multidisciplinary team of supportive oncology researchers developed a workshop patterned after the clinical trials workshop offered jointly by the American Society of Clinical Oncology and American Association of Cancer Research. The curriculum included lectures and a mentored experience of writing a research protocol. Each year since 2015, the workshop has accepted and trained 36 early career investigators. Over the course of the workshop, participants present sections of their research protocols daily in small groups led by senior researchers, and have dedicated time to write and revise these sections. Primary outcomes for the workshop included the frequency of completed protocols by the end of the workshop, a pre- and posttest assessing participant knowledge, and follow-up surveys of the participants and their primary mentors.
ResultOver three years, the workshop received 195 applications; 109 early career researchers were competitively selected to participate. All participants (109/109, 100%) completed writing a protocol by the end of their workshop. Participants and their primary mentors reported significant improvements in their research knowledge and skills. Each year, participants rated the workshop highly in terms of satisfaction, value, and likelihood of recommending it to a colleague. One year after the first workshop, most respondents (29/30, 96.7%) had either submitted their protocol or written at least one other protocol.
Significance of resultsWe developed a workshop on research methods in supportive oncology. More early career investigators applied for the workshop than capacity, and the workshop was fully attended each year. Both the workshop participants and their primary mentors reported improvement in research skills and knowledge.
Making sense of loss through spirituality: Perspectives of African American family members who have experienced the death of a close family member to cancer
- Jill B. Hamilton, Nakia C. Best, Jessica S. Wells, Valarie C. Worthy
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- 12 December 2017, pp. 662-668
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Objective
Among African Americans, spirituality is meaning or purpose in life and a faith in God who is in control of health and there to provide support and guidance in illness situations. Using qualitative methods, we explored the use of spirituality to make sense of the end-of-life and bereavement experiences among family members of a deceased cancer patient.
MethodData in this report come from 19 African Americans who experienced the loss of a family member to cancer. A qualitative descriptive design was used with criterion sampling, open-ended semistructured interviews, and qualitative content analysis.
ResultsParticipants made sense of the death of their loved one using the following five themes: Ready for life after death; I was there; I live to honor their memory; God's wisdom is infinite; and God prepares you and brings you through. These five themes are grounded in conceptualizations of spirituality as connectedness to God, self, and others.
Significance of resultsOur findings support the results that even during bereavement, spirituality is important in the lives of African Americans. African American family members might struggle with issues related to life after death, their ability to be physically present during end-of-life care, and disentangling beliefs around God's control over the beginning and ending of life. The findings in this report can be used to inform healthcare providers to better support and address the needs for support of African American family members during end-of-life and bereavement experiences.
Is spirituality related to survival in advanced cancer inpatients in Korea?
- Dong Wook Shin, Sang-Yeon Suh, Sun-Hyun Kim, Jeanno Park, Seok Joon Yoon, Yu Jung Kim, Beodeul Kang, Jung Hye Kwon, Youngmin Park, Kwonoh Park, David Hui, Hyeon Jeong Kim, Sanghwa Himchak, Sanghee Shiny Lee, Hong-Yup Ahn
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- 21 December 2017, pp. 669-676
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Objective
Spirituality is what gives people meaning and purpose in life, and it has been recognized as a critical factor in patients’ well-being, particularly at the ends of their lives. Studies have demonstrated relationships between spirituality and patient-reported outcomes such as quality of life and mental health. Although a number of studies have suggested that spiritual belief can be associated with mortality, the results are inconsistent. We aimed to determine whether spirituality was related to survival in advanced cancer inpatients in Korea.
MethodFor this multicenter study, we recruited adult advanced cancer inpatients who had been admitted to seven palliative care units with estimated survival of <3 months. We measured spirituality at admission using the Korean version of the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-sp), which comprises two subscales: meaning/peace and faith. We calculated a Kaplan-Meier curve for spirituality, dichotomized at the predefined cutoffs and medians for the total scale and each of the two subscales, and performed univariate regression with a Cox proportional hazard model.
ResultWe enrolled a total of 204 adults (mean age: 64.5 ± 13.0; 48.5% female) in the study. The most common primary cancer diagnoses were lung (21.6%), colorectal (18.6%), and liver/biliary tract (13.0%). Median survival was 19.5 days (95% confidence interval [CI95%]: 23.5, 30.6). Total FACIT-sp score was not related to survival time (hazard ratio [HR] = 0.981, CI95% = 0.957, 1.007), and neither were the scores for its two subscales, meaning/peace (HR = 0.969, CI95% = 0.932, 1.008) and faith (HR = 0.981, CI95% = 0.938, 1.026).
Significance of resultsSpirituality was not related to survival in advanced cancer inpatients in Korea. Plausible mechanisms merit further investigation.
Burnout among psychosocial oncologists in Israel: The direct and indirect effects of job demands and job resources
- Shiri Shinan-Altman, Miri Cohen, Victoria Rasmussen, Adrienne Turnell, Phyllis Butow
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- 19 December 2017, pp. 677-684
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Objective
Psychosocial oncologists may be particularly vulnerable to burnout. This study aimed to assess burnout among Israeli psychosocial oncologists in relation to the Job Demands-Resources model and the coping strategies model.
MethodParticipants included 85 of 128 listed psychosocial oncologists currently working with cancer patients. They completed a questionnaire assessing emotional exhaustion, depersonalization, job demands, job resources, work engagement, overcommitment, and perceived value of work.
ResultsThe mean level of burnout was low, whereas 16.3% experienced high levels of emotional exhaustion and only 2.4% experienced high levels of depersonalization. According to mediation analysis, overcommitment, partially mediated job demands-burnout associations, and work engagement mediated the perceived value-burnout association. Job resources and burnout were not related, either directly or indirectly.
Significance of resultsThe study extended the Job Demands-Resources model to include perceived value as an additional resource, and work-engagement and overcommitment as coping strategies. Two distinct patterns of associations were found between work characteristics and burnout: the positive-protective pattern (perceived value and work engagement) and the negative pattern (job demands and overcommitment). These two patterns should be considered for further research and for implementing preventive interventions to reduce burnout in the workplace setting.
Criterion validity and inter-rater reliability of a palliative care screening tool for patients admitted to an emergency department intensive care unit
- Sabrina Corrêa da Costa Ribeiro, Ricardo Tavares de Carvalho, Juraci Aparecida Rocha, Roger Daglius Dias
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- 26 December 2017, pp. 685-691
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Objective
The use of palliative care (PC) screening criteria to trigger PC consultations may optimize the utilization of PC services, improve patient comfort, and reduce invasive and futile end-of-life care. The aim of the present study was to assess the criterion validity and inter-rater reliability of a PC screening tool for patients admitted to an emergency department intensive care unit (ED-ICU).
MethodObservational retrospective study evaluating PC screening criteria based on the presence of advanced diagnosis and the use of two “surprise questions” (traditional and modified). Patients were classified at ED-ICU admission in four categories according to the proposed algorithm.
ResultA total of 510 patients were included in the analysis. From these, 337 (66.1%) were category 1, 0 (0.0%) category 2, 63 (12.4%) category 3, and 110 (21.6%) category 4. Severity of illness (Simplified Acute Physiology Score III score and mechanical ventilation), mortality (ED-ICU and intrahospital), and PC-related measures (order for a PC consultation, time between admission and PC consultation, and transfer to a PC bed) were significantly different across groups, more evidently between categories 4 and 1. Category 3 patients presented similar outcomes to patients in category 1 for severity of illness and mortality. However, category 3 patients had a PC consultation ordered more frequently than did category 1 patients. The screening criteria were assessed by two independent raters (n = 100), and a substantial interrater reliability was found, with 80% of agreement and a kappa coefficient of 0.75 (95% confidence interval = 0.62, 0.88).
Significance of resultsThis study is the first step toward the implementation of a PC screening tool in the ED-ICU. The tool was able to discriminate three groups of patients within a spectrum of increasing severity of illness, risk of death, and PC needs, presenting substantial inter-rater reliability. Future research should investigate the implementation of these screening criteria into routine practice of an ED-ICU.
The amyotrophic lateral sclerosis supportive care needs assessment instrument: Development and psychometric evaluation
- Juyeon Oh, Seong-il Oh, Jung A Kim
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- 29 January 2018, pp. 692-697
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Objective
The aim of the study is to develop an amyotrophic lateral sclerosis supportive care needs (ALSSCN) instrument based on Fitch's Supportive Care Needs Framework and to test its psychometric properties.
MethodThis study consists of three parts: (1) item generation from the literature review and qualitative interview; (2) content validation; and (3) psychometric evaluation of the instrument. Participants who were diagnosed with ALS (n = 139) were recruited from two ALS clinics in Seoul, Korea, and Busan, Korea for the psychometric testing.
ResultThe ALSSCN consisted of 37 items with seven domains: physical, psychological, emotional, spiritual, social, informational, and practical needs. The Cronbach's alpha of each domain ranged from 0.61 (social needs) to 0.90 (emotional needs). The intra-class correlation coefficient for test-retest was 0.89, indicating good test-retest reliability. The overall ALSSCN was significantly negatively correlated with the quality of life, which supported convergent validity. Confirmatory factor analysis of the ALSSCN supported a seven-factor model.
Significance of resultsThe ALSSCN has acceptable internal consistency, stability, and content and construct validity in a Korean ALS population. ALSSCN is a psychometrically sound measure and can be adopted by healthcare professionals, researchers, and administrators to comprehensively assess the perceived supportive care needs of patients with ALS.
Implementation of the integrated palliative care outcome scale in acute care settings – a feasibility study
- Susanne Lind, J. Sandberg, T. Brytting, C.J. Fürst, L. Wallin
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- 21 January 2018, pp. 698-705
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Objective
Although hospitals have been described as inadequate place for end-of-life care, many deaths still occur in hospital settings. Although patient-reported outcome measures have shown positive effects for patients in need of palliative care, little is known about how to implement them. We aimed to explore the feasibility of a pilot version of an implementation strategy for the Integrated Palliative care Outcome Scale (IPOS) in acute care settings.
MethodA strategy, including information, training, and facilitation to support the use of IPOS, was developed and carried out at three acute care units. For an even broader understanding of the strategy, it was also tested at a palliative care unit. A process evaluation was conducted including collecting quantitative data and performing interviews with healthcare professionals.
ResultFactors related to the design and performance of the strategy and the context contributed to the results. The prevalence of completed IPOS in the patient's records varied from 6% to 44% in the acute care settings. At the palliative care unit, the prevalence in the inpatient unit was 53% and the specialized home care team 35%. The qualitative results showed opposing perspectives concerning the training provided: Related to everyday work at the acute care units and Nothing in it for us at the palliative care unit. In the acute care settings, A need for an improved culture regarding palliative care was identified. A context characterized by A constantly increasing workload, a feeling of Constantly on-going changes, and a feeling of Change fatigue were found at all units. Furthermore, the internal facilitators and the nurse managers’ involvement in the implementation differed between the units.
Significance of the resultsThe feasibility of the strategy in our study is considered to be questionable and the components need to be further explored to enhance the impact of the strategy and thereby improve the use of IPOS.
Personalized and yet standardized: An informed approach to the integration of bereavement care in pediatric oncology settings
- Lori Wiener, Abby R. Rosenberg, Wendy G. Lichtenthal, Julia Tager, Meaghann S. Weaver
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- 01 February 2018, pp. 706-711
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Objective
The death of a child has been associated with adverse parental outcomes, including a heightened risk for psychological distress, poor physical health, loss of employment income, and diminished psychosocial well-being. Psychosocial standards of care for centers serving pediatric cancer patients recommend maintaining at least one meaningful contact between the healthcare team and bereaved parents to identify families at risk for negative psychosocial sequelae and to provide resources for bereavement support. This study assessed how this standard is being implemented in current healthcare and palliative care practices, as well as barriers to its implementation.
MethodExperts in the field of pediatric palliative care and oncology created a survey that was posted with review and permission on four listservs. The survey inquired about pediatric palliative and bereavement program characteristics, as well as challenges and barriers to implementation of the published standards of care.
ResultThe majority of participants (N = 100) self-reported as palliative care physicians (51%), followed by oncologists (19%). Although 59% of staff reported that their center often or always deliver bereavement care after a child's death, approximately two-thirds reported having no policy for the oncology team to routinely assess bereavement needs. Inconsistent types of bereavement services and varying duration of care was common. Twenty-eight percent of participants indicated that their center has no systematic contact with bereaved families after the child's death. Among centers where contacts are made, the person who calls the bereaved parent is unknown to the family in 30% of cases. Few centers (5%) use a bereavement screening or assessment tool.
Significance of resultsLack of routine assessment of bereavement needs, inconsistent duration of bereavement care, and tremendous variability in bereavement services suggest more work is needed to promote standardized, policy-driven bereavement care. The data shed light on multiple areas and opportunities for improvement.
Examining cancer survivorship trajectories: Exploring the intersection between qualitative illness narratives and quantitative screening instruments
- Chelsea Ratcliff, Aanand D. Naik, Lindsey Ann Martin, Jennifer Moye
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- 28 December 2017, pp. 712-718
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Objective
This article examines the associations of quantitatively refined trajectories of adjustment to cancer survivorship determined by previously published qualitative narrative analysis.
MethodPatients completed measures of cancer-related worry (Cancer Related Worries Scale), depression (Patient Health Questionnaire-9), posttraumatic growth (Benefit Finding Scale), and open-ended survey questions 6, 12, and 18 months postdiagnosis of head and neck, esophageal, gastric, or colorectal cancer. Previously published narrative analysis revealed five distinct survivorship “paths,” which were combined into four paths in the present article: Moving On, Seeing the World Differently, Taking One Day at a Time, and Never the Same. To determine the association of qualitatively determined paths with quantitatively assessed adjustment (i.e., Cancer Related Worries Scale, Patient Health Questionnaire-9, Benefit Finding Scale), we used linear multilevel modeling to regress the adjustment variables on time, path, the time-by-path interaction, and relevant covariates (age, stage, cancer site, ethnicity, and Deyo score).
ResultsThere was a significant main effect of path on cancer worry, depression, and posttraumatic growth (p < 0.02 for all). Patients in the Moving On group reported consistently low worry, depression, and growth compared to the other groups. Patients in the Seeing the World Differently and Taking One Day at a Time paths both reported moderate worry and depression; but those in the Seeing the World Differently path reported the highest posttraumatic growth, whereas patients in the Taking One Day at a Time path reported little growth. Finally, patients in the Never the Same path reported the highest worry and depression but lowest posttraumatic growth.
Significance of resultsThis longitudinal study reinforces the notion that cancer survivorship is not a one-size-fits-all experience nor a dichotomized experience of “distress” or “no distress.” Additionally, this hypothesis-generating study suggests future directions for potential self-report measures to help clinicians identify cancer survivors’ trajectory to develop a more patient-centered survivorship care plan.
Post-intensive care syndrome symptoms and health-related quality of life in family decision-makers of critically ill patients
- Amy B. Petrinec, Bradley R. Martin
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- Published online by Cambridge University Press:
- 26 December 2017, pp. 719-724
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Objective
Family members of critically ill patients can suffer symptoms of post-intensive care syndrome-family (PICS-F), including anxiety, depression, and posttraumatic stress disorder (PTSD) with a diminished quality of life. Our aim was to examine the relationship between coping strategies used by family decision-makers (FDMs) of critically ill patients and the severity of PICS-F symptoms and to examine the relationship between FDM PICS-F symptoms and health-related quality of life (HRQOL).
MethodA single-center, prospective, longitudinal descriptive study was undertaken of FDMs of intensive care unit (ICU) patients admitted to a large tertiary care hospital. PICS-F symptoms and coping strategy use were measured upon ICU admission (T1), 30 days (T2) after ICU admission, and 60 days (T3) after ICU admission. HRQOL was measured by the Short Form-36 version 2 at T1 and T3.
ResultsWe found a significant prevalence of anxiety (45.8%), depression (25%), and PTSD (11.1%) symptoms among FDMs over the course of the study. The patient mortality rate in our sample was 50%. The HRQOL mental summary score in FDMs was low at T1 and decreased to M = 41.72 (standard deviation = 12.47) by T3. Avoidant coping demonstrated moderate relationships with PTSD symptoms and anxiety at T3. A previous history of anxiety, depression, or PTSD was a significant predictor of PICS-F symptom severity and prevalence. PICS symptom severity at T3 explained 75% of the variance in HRQOL mental summary score.
Significance of resultsThis study describes a significant prevalence of PICS-F symptoms in FDMs with a diminished mental HRQOL.
Optimism and quality of life in patients with heart failure
- I.H. Kraai, K.M. Vermeulen, H.L. Hillege, T. Jaarsma, T. Hoekstra
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- Published online by Cambridge University Press:
- 04 December 2017, pp. 725-731
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Objectives
Health-related quality of life (HR-QoL) of patients with heart failure (HF) is low despite the aim of HF treatment to improve HR-QoL. To date, most studies have focused on medical and physical factors in relation to HR-QoL, few data are available on the role of emotional factors such as dispositional optimism. This study examines the prevalence of optimism and pessimism in HF patients and investigates how optimism and pessimism are associated with different patient characteristics and HR-QoL.
MethodsDispositional optimism was assessed in 86 HF patients (mean age 70 ± 9 years, 28% female, mean left ventricular ejection fraction 33%) with the Revised Life Orientation Test (LOT-R). HR-QoL was assessed with the Minnesota Living with Heart Failure Questionnaire and the EuroQol.
ResultsThe (mean ± SD) total score on the LOT-R was 14.6 ± 2.9 (theoretical range 0–24) and the scores on the subscales optimism and pessimism were 8.1 ± 1.9 and 5.5 ± 2.5, respectively. Higher age was related to more optimism (r = 0.22, p < 0.05), and optimism was associated with higher generic HR-QoL (B = 0.04, p < 0.05).
Significance of resultsThe association found between optimism and generic HR-QoL of HF patients can lead to promising strategies to improve HF patients’ HR-QoL, particularly because the literature has indicated that optimism is a modifiable condition.
Trajectories of caregiver burden in families of adult cystic fibrosis patients
- Ann Wojtaszczyk, Myra Glajchen, Russell K. Portenoy, Maria Berdella, Patricia Walker, Malcolm Barrett, Jack Chen, Amy Plachta, Julie Balzano, Ashley Fresenius, Kenya Wilder, Elinor Langfelder-Schwind, Lara Dhingra
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- Published online by Cambridge University Press:
- 17 October 2017, pp. 732-740
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Objectives:
Little is known about the experience of family caregivers of adults with cystic fibrosis (CF). This information is important for the identification of caregivers at risk for burden.
Methods:This was a longitudinal analysis of survey data obtained from caregivers of adult CF patients participating in an early intervention palliative care trial. Caregivers completed the validated Brief Assessment Scale for Caregivers (BASC) repeatedly over a 28-month period. Mixed-effects modeling evaluated multivariate associations with positive and negative caregiver perceptions over time.
Results:Of the 54 caregivers, 47.9% were spouses. The mean age was 50.9 years (SD = 13.2); 72.2% were women; 75.9% were married; and 63.0% were employed. At baseline, the BASC revealed large variations in positive and negative perceptions of caregiving. Although average scores over time were unchanging, variation was greater across caregivers than within caregivers (0.49 vs. 0.27, respectively). At baseline, the positive impact of caregiving in the sample was higher than the negative impact. Multivariate analysis revealed that patients' baseline pulmonary function and their full-time employment status predicted caregiver burden over time.
Significance of results:Caregivers of CF patients varied in their positive and negative caregiving experiences, although burden levels in individual caregivers were stable over time. When the disease was advanced, caregivers of CF patients experienced more overall burden but also more positive impact. This suggests that the role of caregivers may become more meaningful as disease severity worsens. In addition, full-time patient employment was associated with lower caregiver burden regardless of disease severity. This suggests that burden in CF caregivers may be predicted by financial strain or benefits conferred by patient employment. These associations require further investigation to determine whether highly burdened caregivers can be identified and assisted using tailored interventions.
The father–daughter relationship in the wake of maternal death from breast cancer
- Marie M. Cohen, David K. Wellisch, Sarah R. Ormseth, Valerie G. Yarema
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- Published online by Cambridge University Press:
- 08 November 2017, pp. 741-748
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Objectives:
This paper examines whether a relationship exists between paternal psychological stability and daughters' symptomatology following the death of a wife/mother from breast cancer. Specifically, is there a relationship between paternal parenting style and the daughters' subsequent capacity to form committed relationships later in life?
Methods:We assessed 68 adult daughters (average age = 23.5 years) since the mother's breast cancer diagnosis by means of a semistructured clinical interview and psychological testing.
Results:The daughters were subdivided into three psychiatric risk groups. Those in the highest risk group were most likely to be single and to have high CES–Depression and STAI–Anxiety scores. Daughters in the highest risk group were also most likely to have fathers who abused substances, fathers who had experienced a serious psychiatric event, and families with the most closed communication about the mother's cancer.
Significance of Results:Psychopathology in fathers correlated with increasing anxiety and depression in adult daughters. Daughters at the highest level of risk had the most severe affective states, the most disturbed father–daughter bonding, and the least ability to create successful interpersonal relationships as adults. We suggest specific interventions for these daughters of the lowest-functioning fathers.
Insights into the factors associated with achieving the preference of home death in terminal cancer: A national population-based study
- Finian Bannon, Victoria Cairnduff, Deirdre Fitzpatrick, Janine Blaney, Barbara Gomes, Anna Gavin, Conan Donnelly
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- Published online by Cambridge University Press:
- 23 November 2017, pp. 749-755
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Objectives:
Most terminally ill cancer patients prefer to die at home, yet only a minority are able to achieve this. Our aim was to investigate the factors associated with cancer patients achieving their preference to die at home.
Methods:This study took the form of a mortality followback, population-based, observational survey of the relatives of deceased cancer patients in Northern Ireland. Individuals who registered the death of a friend or relative (aged ≥ 18 years) between 1 December 2011 and 31 May 2012, where the primary cause of death was cancer (ICD10: C00–D48), who were invited to take part. Preferred and actual place of death, and patient, service, and clinical data were collected using the QUALYCARE postal questionnaire. Multivariable logistic regression was employed to investigate the factors associated with achieving a home death when preferred.
Results:Some 467 of 1,493 invited informants completed the survey. The 362 (77.5%) who expressed a preference for dying at home and spent time at home in their final 3 months were included in our analysis. Of these, 53.4% achieved their preference of a home death. Factors positively associated with achieving a home death were: living in an affluent area, receipt of good and satisfactory district nurse care, discussing place of death with health professionals, and the caregiver's preference for a home death. Being older than 80 years of age, being a Presbyterian, and being unconscious most of the time during their final week were negatively associated with achieving a home death.
Significance of Results:Communication, care satisfaction, and caregiver preferences were all associated with home death. Our findings will help inform the design of future interventions aimed at increasing the proportion of patients achieving their preferred place of death at home, for example, by targeting interventions toward older patients and those from the most deprived communities.
Sleep–wake difficulties in community-dwelling cancer patients receiving palliative care: subjective and objective assessment
- Marie Solange Bernatchez, Josée Savard, Marie-Hélène Savard, Michèle Aubin, Hans Ivers
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- Published online by Cambridge University Press:
- 21 September 2017, pp. 756-766
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Objective:
Prevalence rates of sleep difficulties in advanced cancer patients have varied widely across studies (12 to 96%), and none of these employed a diagnostic interview to distinguish different types of sleep–wake disorders. Moreover, very limited information is available on subjective and objective sleep parameters in this population. Our study was conducted in palliative cancer patients and aimed to assess rates of sleep–wake disorders and subsyndromal symptoms and to document subjective and objective sleep–wake parameters across various types of sleep–wake difficulties.
Method:The sample was composed of 51 community-dwelling cancer patients receiving palliative care and having an Eastern Cooperative Oncology Group score of 2 or 3. Relevant sections of the Duke Interview for Sleep Disorders were administered over the phone. An actigraphic recording and a daily sleep diary were completed for 7 consecutive days.
Results:Overall, 68.6% of the sample had at least one type of sleep–wake difficulty (disorder or symptoms): 31.4% had insomnia and 29.4% had hypersomnolence as their main sleep–wake problem. Participants with insomnia as their main sleep difficulty had greater disruptions of subjective sleep parameters, while objectively-assessed sleep was more disrupted in patients with hypersomnolence comorbid with another sleep–wake difficulty.
Significance of the Results:The high rates of sleep–wake difficulties found in this study indicate a need to screen more systematically for sleep–wake disorders, including insomnia and hypersomnolence, in both palliative care research and clinical practice, and to develop effective nonpharmacological interventions specifically adapted to this population.
Cancer treatment experiences among survivors of childhood sexual abuse: A qualitative investigation of triggers and reactions to cumulative trauma
- Julie B. Schnur, Matthew J. Dillon, Rachel E. Goldsmith, Guy H. Montgomery
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- Published online by Cambridge University Press:
- 15 August 2017, pp. 767-776
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Objective:
Some 25% of women and 8% of men in the United States have experienced childhood sexual abuse (CSA) before the age of 18. For these individuals, healthcare visits and interactions can be retraumatizing due to perceived similarities to past abuse (e.g., pain, undressing, lack of control). However, no prior studies have provided formal qualitative analyses regarding CSA survivors' reactions to cancer treatment. Therefore, our study's objective was to identify key themes pertaining to CSA survivors' cancer treatment experiences.
Method:Male and female members of the Amazon Mechanical Turk (N = 159, mean age = 44.27 years, SD = 10.02) participated in an anonymous online survey study. The inclusion criteria included reporting: history of CSA; a diagnosis of colorectal, gynecological, breast, or skin cancer; and experience of triggers and/or difficulties during cancer treatment. Participants' responses to open-ended questions were analyzed using inductive thematic analysis.
Results:We identified two primary themes describing CSA survivors' experiences: Theme 1: treatment-related triggers (key subthemes: procedure-related, provider-related, and emotional triggers); and Theme 2: questioning the meaning of cumulative trauma (e.g., “Why me again?”).
Significance of results:For CSA survivors, cancer and its treatment can trigger thoughts and emotions associated with the original abuse as well as negative evaluations of themselves, the world, and their future. Our findings are consistent with past research on CSA survivors' experiences in non-cancer healthcare settings and add to the literature by highlighting their struggles during cancer treatment. The present results can inform further research on trauma survivors' reactions to cancer treatment and give cancer care providers the context they need to understand and sensitively serve a substantial yet often overlooked patient group.
Live music intervention for cancer inpatients: The Music Givers format
- Alessandro Toccafondi, Andrea Bonacchi, Andrea Mambrini, Guido Miccinesi, Roberto Prosseda, Maurizio Cantore
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- Published online by Cambridge University Press:
- 28 March 2017, pp. 777-784
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Objective:
The present study intended to evaluate the impact of a standardized format—called the “Music Givers,” based on a single session of music intervention followed by a buffet—on the psychological burden and well-being of hospitalized cancer patients.
Method:The Distress Thermometer (DT), the Hospital Anxiety and Depression Scale (HADS), and self-reported visual analogue scales (score range = 1–10) to assess pain, fatigue, and five areas of well-being (i.e., physical, psychological, relational, spiritual, and overall well-being) were administered to 242 cancer patients upon admission to and at discharge from the hospital. Among them, 103 were hospitalized during which time a live concert took place (intervention group), whereas 139 patients were hospitalized when it did not (control group).
Results:Compared to the control group, patients in the intervention group demonstrated less distress at discharge according to the DT (adjusted estimate of difference = –0.8, p = 0.001), lower HADS–Anxiety (–1.7, p < 0.001) and HADS–Depression scores (–1.3, p = 0.001), and higher scores on all the well-being scales, with the exception of spiritual well-being. In addition, no between-group differences were found in terms of pain and fatigue scores at discharge.
Significance of results:The one-session format of the Music Givers intervention is an effective, standardized, easy-to-replicate, and low-cost intervention that reduces psychological burden and improves the well-being of hospitalized cancer patients. Listening to live music and the opportunity to establish better relationships between patients and staff could explain these results.