Development and evaluation of the Dignity Talk question framework for palliative patients and their families: A mixed-methods study

Background: Effective patient–family communication can reduce patients’ psychosocial distress and relieve family members’ current suffering and their subsequent grief. However, terminally ill patients and their family members often experience great difficulty in communicating their true feelings, concerns, and needs to each other. Aim: To develop a novel means of facilitating meaningful conversations for palliative patients and family members, coined Dignity Talk, explore anticipated benefits and challenges of using Dignity Talk, and solicit suggestions for protocol improvement. Design: A convergent parallel mixed-methods design. Dignity Talk, a self-administered question list, was designed to prompt end-of-life conversations, adapted from the Dignity Therapy question framework. Participants were surveyed to evaluate the Dignity Talk question framework. Data were analyzed using qualitative and quantitative methods. Setting/participants: A total of 20 palliative patients, 20 family members, and 34 healthcare providers were recruited from two inpatient palliative care units in Winnipeg, Canada. Results: Most Dignity Talk questions were endorsed by the majority of patients and families (>70%). Dignity Talk was revised to be convenient and flexible to use, broadly accessible, clearly stated, and sensitively worded. Participants felt Dignity Talk would be valuable in promoting conversations, enhancing family connections and relationships, enhancing patient sense of value and dignity, promoting effective interaction, and attending to unfinished business. Participants suggested that patients and family members be given latitude to respond only to questions that are meaningful to them and within their emotional capacity to broach. Conclusion: Dignity Talk may provide a gentle means of facilitating important end-of-life conversations

Postgraduate palliative care education: Evaluation of a South African programme

Aim. We aimed to assess the postgraduate palliative care distance education programme of the University of Cape Town (UCT) in terms of its perceived ability to influence palliative care delivery. Methods. A mixed-methods approach, consisting of two surveys using open-ended and multiple-choice options, was conducted from January - December 2007 at the UCT School of Public Health and Family Medicine. All students registered in the programme from 2000 - 2007 were invited to participate; 83 (66.4% of all eligible participants) completed the general survey, and 41 (65.7%) of the programme's graduates completed the graduate survey. The survey scores and open-ended data were triangulated to evaluate UCT’s palliative care postgraduate programme. Results. General survey scores of graduates were significantly higher in 5 of the 6 categories in comparison with current students. The graduate survey indicated that curriculum and teaching strengths were in communication and dealing with challenging encounters. Graduates also stressed the need to develop a curriculum that incorporated a practical component. Conclusions. In addition to current postgraduate training, palliative care education in South Africa should be extended to undergraduate medical students, as the benefits of UCT’s programme were limited to a small cohort of practitioners

The Portuguese versions of the This Is ME Questionnaire and the Patient Dignity Question: tools for understanding and supporting personhood in clinical care

Background: Modern medicine can be impersonal and routinized, paying insufficient attention to issues of personhood. The Patient Dignity Question (PDQ) and This Is ME (TIME) Questionnaire are clinical tools developed with the aim of probing for personhood, reinforcing dignity and promoting health care attitudes based on looking at people for who they are and not defining them solely based on their medical condition. This study aimed to translate and validate the TIME Questionnaire and the PDQ into European Portuguese, coined as Questionário Este Sou EU (ESEU) and Pergunta da Dignidade (PD), respectively. Methods: A three-stage research design, namely: a forward and back translation process (which included an expert committee panel), collected data on a sample of 43 non-institutionalized active elderly for the validation stage and a final expert panel consultation. Inclusion criteria: being 50 years old or older; ability to provide written informed consent; ability to read, speak and understand Portuguese. Results: The original TIME authors fully endorsed the back translated version. A Portuguese version was created. Forty-three participants (response rate of 62%) were included, 53% of whom were male. The average age was 69 years old (range, 60–80 years old). The interviewed elderly strongly felt that the ESEU’s summary captured their essence as a person beyond whatever health problems they might be experiencing (6.8, SD =0.48), heightened their sense of dignity (6.1, SD =1.48), considered important that health care professionals (HCPs) have access to ESEU’s summary (6.6, SD =0.73) and that this information could affect the way HCPs see and care for them (6.4, SD =0.86), rated on a Likert scale: 1 “strongly disagree”–7 “strongly agree”. According to the experts’ evaluations, the translated ESEU Questionnaire was clear, precise, comprehensible and captured important dimensions of personhood. Conclusions: The Questionário ESEU and the PD are clear, precise, comprehensible and well-aligned in terms of measuring aspects of personhood. This measure could add additional value to the patient-healthcare provider relationship, allowing a new perspective on how healthcare professionals perceive patients in suffering, ensuring they acknowledge not just patienthood, but critical dimensions of personhood.Foundation for Science and Technology (FCT) PhD Fellow Grant number PD/BD/113664/2015 Doctoral Program in Clinical and Health Services Research (PDICSS) funded by FCT Grant number (PD/0003/2013); F Fareleira is funded by Foundation for Science and Technology (FCT) PhD Fellow Grant number PD/BD/132860/2017 Doctoral Program in Clinical and Health Services Research (PDICSS); N Correia Santos: this work has been developed under the scope of the project NORTE-01-0145-FEDER-000013, supported by the Northern Portugal Regional Operational Programme (NORTE 2020), under the Portugal 2020 Partnership Agreement, through the European Regional Development Fund (FEDER), and was co-financed by the Portuguese North Regional Operational Program (ON.2—O Novo Norte), under the National Strategic Reference Framework (QREN), through FEDER. N Correia Santos is supported by a Research Assistantship by the Portuguese Foundation for Science and Technology (FCT, Portugal) through the “FCT Investigator Programme (200 ∞ Ciência)”info:eu-repo/semantics/publishedVersio

Is dignity therapy feasible to enhance the end of life experience for people with motor neurone disease and their family carers?

Background: Development of interventions that address psychosocial and existential distress in people with motor neurone disease (MND) or that alleviate caregiver burden in MND family carers have often been suggested in the research literature. Dignity therapy, which was developed to reduce psychosocial and existential distress at the end of life, has been shown to benefit people dying of cancer and their families. These results may not be transferable to people with MND. The objectives of this study are to assess the feasibility, acceptability and potential effectiveness of dignity therapy to enhance the end of life experience for people with motor neurone disease and their family carers. Methods/design: This is a cross-sectional study utilizing a single treatment group and a pre/post test design. The study population will comprise fifty people diagnosed with MND and their nominated family carers. Primarily quantitative outcomes will be gathered through measures assessed at baseline and at approximately one week after the intervention. Outcomes for participants include hopefulness, spirituality and dignity. Outcomes for family carers include perceived caregiver burden, hopefulness and anxiety/depression. Feedback and satisfaction with the intervention will be gathered through a questionnaire. Discussion: This detailed research will explore if dignity therapy has the potential to enhance the end of life experience for people with MND and their family carers, and fill a gap for professionals who are called on to address the spiritual, existential and psychosocial needs of their MND patients and families

Compassion: a scoping review of the healthcare literature

BACKGROUND: Recent concerns about suboptimal patient care and a lack of compassion have prompted policymakers to question the preparedness of clinicians for the challenging environment in which they practice. Compassionate care is expected by patients and is a professional obligation of clinicians; however, little is known about the state of research on clinical compassion. The purpose of this scoping review was to map the literature on compassion in clinical healthcare. METHODS: Searches of eight electronic databases and the grey literature were conducted to identify empirical studies published over the last 25 years. Eligible studies explored perceptions or interventions of compassionate care in clinical populations, healthcare professionals, and healthcare students. Following the title and abstract review, two reviewers independently screened full-texts articles, and extracted study data. A narrative approach to synthesizing and mapping the literature was used. RESULTS AND DISCUSSION: Of 36,637 records, 648 studies were retrieved and 44 studies were included in the review. Less than one third of studies included patients. Six themes emerged from studies that explored perceptions of compassionate care: nature of compassion, development of compassion, interpersonal factors related to compassion, action and practical compassion, barriers and enablers of compassion, and outcomes of compassion. Intervention studies included two compassionate care trials with patients and eight educational programs that aimed to improve compassionate care in clinicians and students. CONCLUSIONS: This review identifies the limited empirical understanding of compassion in healthcare, highlighting the lack of patient and family voices in compassion research. A deeper understanding of the key behaviors and attitudes that lead to improved patient-reported outcomes through compassionate care is necessary