Background:
Compassion is considered an essential element in quality patient care. One of the conceptual challenges in healthcare literature is that compassion is often confused with sympathy and ...empathy. Studies comparing and contrasting patients’ perspectives of sympathy, empathy, and compassion are largely absent.
Aim:
The aim of this study was to investigate advanced cancer patients’ understandings, experiences, and preferences of “sympathy,” “empathy,” and “compassion” in order to develop conceptual clarity for future research and to inform clinical practice.
Design:
Data were collected via semi-structured interviews and then independently analyzed by the research team using the three stages and principles of Straussian grounded theory.
Setting/participants:
Data were collected from 53 advanced cancer inpatients in a large urban hospital.
Results:
Constructs of sympathy, empathy, and compassion contain distinct themes and sub-themes. Sympathy was described as an unwanted, pity-based response to a distressing situation, characterized by a lack of understanding and self-preservation of the observer. Empathy was experienced as an affective response that acknowledges and attempts to understand individual’s suffering through emotional resonance. Compassion enhanced the key facets of empathy while adding distinct features of being motivated by love, the altruistic role of the responder, action, and small, supererogatory acts of kindness. Patients reported that unlike sympathy, empathy and compassion were beneficial, with compassion being the most preferred and impactful.
Conclusion:
Although sympathy, empathy, and compassion are used interchangeably and frequently conflated in healthcare literature, patients distinguish and experience them uniquely. Understanding patients’ perspectives is important and can guide practice, policy reform, and future research.
Dementia is the major cause for disability and dependence in older people and associated with considerable psychological burden. The aim of this study was to determine the feasibility, acceptability ...and preliminary efficacy of Dignity Therapy, a brief psychotherapeutic intervention to enhance dignity and reduce psychological burden, in patients with early stage dementia and in their families or close friends.
In this randomized, waitinglist-controlled clinical trial a total of 54 patients with new diagnosis of early stage dementia and 54 study partners (spouses:
= 37; relatives:
= 14; close friends:
= 3) were randomly assigned to immediate treatment (
= 28) or delayed treatment (
= 26) after 3 months waiting. The main outcomes were feasibility: proportion of screened and invited patients who consented participation; Acceptability: number of drop-outs, and satisfaction with treatment; Efficacy: psychological burden (Hospital Anxiety and Depression Scale-HADS), quality of life (WHOQOL-Bref), and sense of dignity (Patient Dignity Inventory-PDI).
In total 38.6% of all eligible patients (
= 140) consented and were enrolled. Along the study six participants (11.1%) dropped out. Patients' satisfaction with the treatment was high and with no significant difference between the groups. HADS scores were significantly lower in both groups at the 3-months follow-up (immediate group: mean difference = -2.69, SE = 0.85,
= 0.003; delayed group: mean difference = -1.97, SE = 0.89,
= 0.031). There was no significant group by time interaction effect (
= 0.71; df = 2, 70.3;
= 0.50). PDI scores only decreased significantly (i.e., improvement of dignity) in the immediate group (mean difference = -6.56, SE = 1.63,
< 0.001; delayed group: mean difference = -3.01, SE = 1.69,
= 0.081), but the group by time interaction effect was not statistically significant (
= 2.29; df = 1, 46.8;
= 0.14). Quality of life improved in some respects by the treatment, but the immediate and the delayed group did not differ significantly over time. After pooling patients' data of both groups, Dignity Therapy resulted in significant improvements in almost all outcome measures. Patients' family members/close friends reported high satisfaction with the intervention.
Our findings suggest that Dignity Therapy is feasible and highly accepted in patients with early stage dementia. Patients reported significant improvements, however, there was no significant effect of the intervention in the immediate treatment group compared to the delayed group.
Aims and objectives
To explore healthcare provider perspectives and experiences of perceived barriers and facilitators of compassion.
Background
Compassion is considered a component of quality health ...care that healthcare providers are increasingly expected to provide. While there have been some studies exploring facets of healthcare providers’ perspectives on the barriers and facilitators to providing compassion, a comprehensive understanding based on direct reports from healthcare providers is lacking.
Design
Data were collected via focus groups and semi‐structured interviews. Data was analyzed in accordance with Straussian grounded theory.
Methods
Semistructured focus groups with frontline healthcare providers and individual interviews with peer‐nominated exemplary compassionate care providers were audio‐recorded, professionally transcribed and analysed. Fifty‐seven participants were recruited from three healthcare settings within both rural and urban settings in Alberta, Canada, using convenience, snowball and theoretical sampling.
Results
Qualitative analysis of the data generated two categories and associated themes and subthemes delineating perceived barriers and facilitators to compassion. The first category, challenges to compassion, reflects participants’ discomfort associating the notion of barriers to compassion and contained several themes participants conceptualised as challenges: personal challenges, relational challenges, systemic challenges and maladaptive responses. The second category, facilitators of compassion, included the themes of personal facilitators, relational facilitators, systemic facilitators and adaptive responses of intentional action.
Conclusion
Although participants described certain factors such as system and time constraints along with interaction styles of patients and families that can challenge healthcare provider compassion, these challenges were not considered insurmountable. While acknowledging these as challenges, participants identified healthcare providers themselves, including their responses towards the identified challenges of compassion, as significant factors in this process—a novel finding from this study. This study provides insight into healthcare providers’ perspectives on the notion of barriers and facilitators in the provision of compassion.
Relevance to clinical practice
This study provides a blueprint for optimising compassion on a personal, relational and system level.
Intervention fidelity is imperative to ensure confidence in study results and intervention replication in research and clinical settings. Like many brief protocol psychotherapies, Dignity Therapy ...lacks sufficient evidence of intervention fidelity. To overcome this gap, our study purpose was to examine intervention fidelity among therapists trained with a systematized training protocol.
For preliminary fidelity evaluation in a large multi-site stepped wedge randomized controlled trial, we analyzed 46 early transcripts of interviews from 10 therapists (7 female; 7 White, 3 Black). Each transcript was evaluated with the Revised Dignity Therapy Adherence Checklist for consistency with the Dignity Therapy protocol in terms of its Process (15 dichotomous items) and Core Principles (6 Likert-type items). A second rater independently coded 26% of the transcripts to assess interrater reliability.
Each therapist conducted 2 to 10 interviews. For the 46 scored transcripts, the mean Process score was 12.4/15 (SD = 1.2), and the mean Core Principles score was 9.9/12 (SD = 1.8) with 70% of the transcripts at or above the 80% fidelity criterion. Interrater reliability (Cohen's kappa and weighted kappa) for all Adherence Checklist items ranged between .75 and 1.0. For the Core Principles items, Cronbach's alpha was .92.
Preliminary findings indicate that fidelity to Dignity Therapy delivery was acceptable for most transcripts and provide insights for improving consistency of intervention delivery. The systematized training protocol and ongoing monitoring with the fidelity audit tool will facilitate consistent intervention delivery and add to the literature about fidelity monitoring for brief protocol psychotherapeutic interventions.
The lack of a holistic approach to palliative care can lead to a fractured sense of dignity at the end of life, resulting in depression, hopelessness, feelings of being a burden to others, and the ...loss of the will to live among terminally ill patients. Building on the clinical foundation of Dignity Therapy, together with the empirical understanding of dignity-related concerns of Asian families facing terminal illness, a novel Family Dignity Intervention (FDI) has been developed for Asian palliative care. FDI comprises a recorded interview with a patient and their primary family caregiver, which is transcribed, edited into a legacy document, and returned to the dyads for sharing with the rest of the patient's family. The aims of this study are to assess the feasibility, acceptability and potential effectiveness of FDI in reducing psychosocial, emotional, spiritual, and psychophysiological distress in community-dwelling and in-patient, Asian, older terminally ill patients and their families living in Singapore.
An open-label randomized controlled trial. One hundred and twenty-six patient-family dyads are randomly allocated to one of two groups: (1) an intervention group (FDI offered in addition to standard psychological care) and (2) a control group (standard psychological care). Both quantitative and qualitative outcomes are assessed in face-to-face interviews at baseline, 3 days and 2 weeks after intervention, as well as during an exit interview with family caregivers at 2 months post bereavement. Primary outcome measures include sense of dignity for patients and psychological distress for caregivers. Secondary outcomes include meaning in life, quality of life, spirituality, hopefulness, perceived support, and psychophysiological wellbeing, as well as bereavement outcomes for caregivers. Qualitative data are analyzed using the Framework method.
To date, there is no available palliative care intervention for dignity enhancement in Asia. This first-of-its-kind study develops and tests an evidence-based, family driven, psycho-socio-spiritual intervention for enhancing dignity and wellbeing among Asian patients and families facing mortality. It addresses a critical gap in the provision of holistic palliative care. The expected outcomes will contribute to advancements in both theories and practices of palliative care for Singapore and its neighboring regions while serving to inform similar developments in other Asian communities.
ClinicalTrials.gov, ID: NCT03200730 . Registered on 26 June 2017.
Supportive-expressive group therapy has been reported to prolong survival among women with metastatic breast cancer. However, in recent studies, various psychosocial interventions have not prolonged ...survival.
In a multicenter trial, we randomly assigned 235 women with metastatic breast cancer who were expected to survive at least three months in a 2:1 ratio to an intervention group that participated in weekly supportive-expressive group therapy (158 women) or to a control group that received no such intervention (77 women). All the women received educational materials and any medical or psychosocial care that was deemed necessary. The primary outcome was survival; psychosocial function was assessed by self-reported questionnaires.
Women assigned to supportive-expressive therapy had greater improvement in psychological symptoms and reported less pain (P=0.04) than women in the control group. A significant interaction of treatment-group assignment with base-line psychological score was found (P</=0.003 for the comparison of mood variables; P=0.04 for the comparison of pain); women who were more distressed benefited, whereas those who were less distressed did not. The psychological intervention did not prolong survival (median survival, 17.9 months in the intervention group and 17.6 months in the control group; hazard ratio for death according to the univariate analysis, 1.06 95 percent confidence interval, 0.78 to 1.45; hazard ratio according to the multivariate analysis, 1.23 95 percent confidence interval, 0.88 to 1.72).
Supportive-expressive group therapy does not prolong survival in women with metastatic breast cancer. It improves mood and the perception of pain, particularly in women who are initially more distressed.
To identify the impact of prognostic acceptance/nonacceptance on the physical, psychological, and existential well-being of patients with advanced cancer.
A Canadian multicenter prospective national ...survey was conducted of patients diagnosed with advanced cancer with an estimated survival duration of 6 months or less (n = 381) receiving palliative care services.
Of the total number of participants, 74% reported accepting their situation and 8.6% reported accepting with "moderate" to "extreme" difficulty. More participants with acceptance difficulties than without acceptance difficulties met diagnostic criteria for a depressive or anxiety disorder (chi(2) = 8.67; P < .01). Nonacceptors were younger (t = 4.13; P < .000), had more than high school education (chi(2) = 4.69; P < .05), and had smaller social networks (t = 2.53; P < .05) than Acceptors. Of the Nonacceptors, 42% described their experience as one of "moderate" to "extreme" suffering compared with 24.1% of Acceptors (chi(2) = 5.28; P < .05). More than one third (37.5%) of Nonacceptors reported feeling hopeless compared with 8.6% who had no difficulty accepting (chi(2) = 24.76; P < .000). Qualitatively, participants described active and passive coping strategies that helped them accept what was happening to them, as well as barriers that made it difficult to come to terms with their current situation.
The challenge of coming to terms with a terminal prognosis is a complex interplay between one's basic personality, the availability of social support, and one's spiritual and existential views on life. Nonacceptance appears to be highly associated with feelings of hopelessness, a sense of suffering, depression, and anxiety, along with difficulties in terms of social-relational concerns.
With increasing numbers of older adults identifying a nursing home (NH) as their final place of care, it is important to assess the quality of dying in this setting and understand factors that impact ...family members' dissatisfaction with end-of-life care. A retrospective bereaved family member survey (N = 208) was conducted in 21 NHs located in urban areas of central Canada. Bereaved family members who were dissatisfied with care identified significantly more concerns in all domains assessed and were more likely to have problems with: (a) receiving confusing information from nursing staff about the resident's care, including medical treatments; (b) receiving inadequate information from nursing staff; and (c) feeling that end-of-life care was different than they had expected. Since the quality of communication between nurses, residents, and family members is the main factor that determines families' dissatisfaction with care, strategies and interventions aimed at reducing unmet information needs will be vital to improving end-of-life care in NHs.
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