BACKGROUND: There is widespread agreement about the importance of spiritual training programs (STPs) for healthcare professionals caring for cancer patients, and that reflecting on one's spirituality is the first step. Health professionals (HPs) working in hospitals must develop this dimension to guarantee the quality of life as well as spiritual and emotional support. In this paper, we propose a possible training format for hospital professionals and assess its implementation. METHODS: This is a phase 0-I study that follows the Medical Research Council (MRC) framework. The program was implemented for hospital palliative care specialists. The program included one theory lesson, three spiritual interactions, four pieces of reflective writing, and two individual follow-up sessions for each participant. The evaluation was performed quantitatively according to the MRC framework and qualitatively according to Moore's framework with data triangulation from interviews, reflective writings, and indicators. RESULTS: The program was implemented for palliative care physicians, nurses, psychologists, and bioethicists according to the plan, and the program components were highly appreciated by the participants. The results suggest the feasibility of a training course with some corrections, regarding both the components of the training and organizational issues. The qualitative analysis confirmed a shift in the meaning of the themes we identified. The trainees went from intrapersonal spirituality to interpersonal spirituality (engagement with the other person's spirituality, acknowledging their unique spiritual and cultural worldviews, beliefs, and practices), with colleagues, patients, and people close to them. The training had an impact on Moore's Level 3b. CONCLUSIONS: Spiritual training for hospital professionals working in palliative care is feasible. Having time dedicated to spirituality and the ongoing mentorship of spiritual care professionals were suggested as key elements. The next step is increasing awareness of spirituality from our hospital reality and creating a stable competent group (with nurses, chaplains, nuns, counselors, etc.) with the support of the management.
Spiritual Therapies , Spirituality , Humans , Palliative Care/methods , Feasibility Studies , Quality of Life/psychology
BACKGROUND: Key elements in cancer cachexia (CC) management are personalized and multimodal interventions, but it is hard for some patients to follow programs based on several components. We examined the feasibility of a bimodal intervention, including a psycho-educational component and exercises, to support patients and their caregivers in managing CC; Methods: Prospective mixed-methods pilot study explored feasibility data, changes in patient-reported outcomes, and performance outcomes over time in a convenient sample of 30 consecutive CC patients and their caregivers. RESULTS: Twenty-four dyads consented to participate. Twenty dyads received at least two psycho-educational sessions, so the psycho-educational component was feasible for 83.3% of the sample. Six dyads participated in at least fourteen out of twenty-seven rehabilitation sessions, so the exercise program was feasible for 25.0% of the sample. Six dyads showed compliance greater than 50% for both components of the bimodal intervention. CONCLUSIONS: While we did not meet our primary feasibility endpoint and had mixed acceptability, our experience provides insight into the challenges and lessons learned in implementing a primary palliative care intervention for CC. More robust studies are needed to help clinicians understand the best exercise program for CC patients, to be included in a multimodal intervention.
BACKGROUND: In 2017, the European Association for Neuro-Oncology (EANO) published the guideline for palliative care (PC) in adults with glioma. The Italian Society of Neurology (SIN), the Italian Association for Neuro-Oncology (AINO), and the Italian Society for Palliative Care (SICP) joined forces to update and adapt this guideline to the Italian context and aimed to involve patients and carers in the formulation of the clinical questions. METHODS: During semi-structured interviews with glioma patients and focus group meetings (FGMs) with family carers of deceased patients, participants rated the importance of a set of pre-specified intervention topics, shared their experience, and suggested additional topics. Interviews and FGMs were audio-recorded, transcribed, coded, and analyzed (framework and content analysis). RESULTS: We held 20 interviews and five FGMs (28 carers). Both parties considered the pre-specified topics as important, chiefly information/communication, psychological support, symptoms management, and rehabilitation. Patients aired the impact of focal neurological and cognitive deficits. Carers reported difficulties in dealing with patient's behavior and personality changes and appreciated the preservation of patient's functioning via rehabilitation. Both affirmed the importance of a dedicated healthcare path and patient's involvement in the decision-making process. Carers expressed the need to be educated and supported in their caregiving role. CONCLUSIONS: Interviews and FGMs were well informative and emotionally challenging. Both parties confirmed the importance of the pre-specified topics, and carers suggested one additional topic: education/support to caregivers. Our findings strengthen the importance of a comprehensive care approach and of addressing the needs of both patients and their family carers.
Glioma , Palliative Care , Humans , Adult , Caregivers/psychology , Focus Groups , Delivery of Health Care , Glioma/therapy
BACKGROUND: In 2017, the European Association of Neuro-Oncology (EANO) published the guideline for palliative care in adults with glioma. The Italian Society of Neurology (SIN), the Italian Society for Palliative Care (SICP), and the Italian Association for Neuro-Oncology (AINO) joined forces to update the guideline, and adapt it to the Italian context. AIM: We involved patients, caregivers, and (herein presented) healthcare professionals (HPs) in the formulation of the guideline clinical questions. DESIGN AND PARTICIPANTS: Online survey of Italian HPs experienced in the care of patients with glioma. Participants rated the importance of 14 pre-specified intervention topics on a 0/10 scale and gave their free comments. RESULTS: Of 244 participants, 149 (61%) were palliative medicine (PM) HPs and 95 Neuro HPs. Their mean age was 48.9 years, 63% were women, and 48% had over 12 years of experience in the care of glioma patients. Physicians were 68%, followed by nurses (28%), psychologists (7%), therapists (3%), and social workers (2%). Most HPs rated the pre-specified topics as important (score ≥ 7) or critical (score ≥ 9), with some differences between PM and Neuro HP groups. There were 58 free comments: 46 (78%) on nine pre-specified topics, and 13 on four new topics, three of which were guideline-pertinent ("caregiver's support and education"; "family physician's training in neuro-oncology"; and "PM HPs' training in neuro-oncology"). CONCLUSIONS: Participation in the survey was high and information-rich, between-group rating differences reflecting HP background. Participants endorsed the 14 intervention topics devised by the guideline panel and identified three additional topics.
Glioma , Palliative Care , Humans , Adult , Female , Middle Aged , Male , Glioma/therapy , Health Personnel , Italy , Caregivers
A range of professional figures are needed to preserve the quality of life of people with amyotrophic lateral sclerosis. This study aimed to explore the beginning of the care process as negotiated by people with amyotrophic lateral sclerosis, their caregivers, and healthcare professionals. We designed the study according to the constructivist Grounded Theory method, collecting data through open-ended, semi-structured interviews, employing theoretical sampling and constant comparison, and performing conceptual coding as data analysis. By naming the core category "off-beat interfacing", we were able to show how the demands of the professionals concerned did not correspond to the ability of people with ALS and their proxies to process information, deal with requests, and be at ease in making decisions at the beginning of the shared care pathway. Three categories were generated: (i) navigating different paths, (ii) offering and experiencing a standard, non-personalized pathway, and (iii) anticipating decisions. The network of services must be organized according to guidelines, but must also contemplate a patient-family-centered approach that permits more personalized assistance.
Introduction: Palliative care is an emotionally and spiritually high-demanding setting of care. The literature reports on the main issues in order to implement self-care, but there are no models for the organization of the training course. We described the structure of training on self-care and its effects for a Hospital Palliative Care Unit. Method: We used action-research training experience based mostly on qualitative data. Thematic analysis of data on open-ended questions, researcher's field notes, oral and written feedback from the trainer and the participants on training outcomes and satisfaction questionnaires were used. Results: Four major themes emerged: (1) "Professional role and personal feelings"; (2) "Inside and outside the team"; (3) "Do I listen to my emotions in the care relationship?"; (4) "Death: theirs vs. mine." According to participants' point of view and researchers' observations, the training course resulted in ameliorative adjustments of the program; improved skills in self-awareness of own's emotions and sharing of perceived emotional burden; practicing "compassionate presence" with patients; shared language to address previously uncharted aspects of coping; allowing for continuity of the skills learned; translation of the language learned into daily clinical practices through specific facilitation; a structured staff's support system for emotional experiences. Discussion: Self-care is an important enabler for the care of others. The core of our intervention was to encourage a meta-perspective in which the trainees developed greater perspicacity pertaining to their professional role in the working alliance and also recognizing the contribution of their personal emotions to impasse experienced with patients.
BACKGROUND: Dignity is a basic principle of palliative care and is intrinsic in the daily practice of professionals assisting individuals with incurable diseases. Dignity Therapy (DT) is a short-term intervention aimed at improving the sense of purpose, meaning and self-worth and at reducing the existential distress of patients facing advanced illness. Few studies have examined how DT works in countries of non-Anglo Saxon culture and in different real-life settings. Moreover, most studies do not provide detailed information on how DT is conducted, limiting a reliable assessment of DT protocol application and of its evaluation procedure. The aim of this study was to assess the feasibility and acceptability of a nurse-led DT intervention in advanced cancer patients receiving palliative care. METHOD: This is a mixed-method study using before and after evaluation and semistructured interviews. Cancer patients referred to a hospital palliative care unit were recruited and provided with DT. The duration of sessions, and timeframes concerning each step of the study, were recorded, and descriptive statistical analyses were performed. The patients' dignity-related distress and feedback toward the intervention were assessed through the Patient Dignity Inventory and the Dignity Therapy Patient Feedback Questionnaire, respectively. Three nurses were interviewed on their experience in delivering the intervention, and the data were analyzed qualitatively. RESULTS: A total of 37/50 patients were enrolled (74.0%), of whom 28 (75.7%) completed the assessment. In 76.7% of cases, patients completed the intervention in the time limit scheduled in the study. No statistically significant reduction in the Patient Dignity Inventory scores was observed at the end of the intervention; most patients found DT to be helpful and satisfactory. Building opportunities for personal growth and providing holistic care emerged among the facilitators to DT implementation. Nurses also highlighted too great of a time commitment and a difficult collaboration with ward colleagues among the barriers. CONCLUSIONS: Our findings strongly support the acceptability, but only partially support the feasibility, of nurse-led DT in advanced cancer patients in a hospital setting. Further research is needed on how to transfer the potential benefits of DT into clinical practice. TRIAL REGISTRATION: Retrospectively registered on ClinicalTrial.gov NCT04738305 .
Neoplasms , Terminal Care , Feasibility Studies , Hospitals , Humans , Neoplasms/therapy , Palliative Care , Respect
BACKGROUND AND AIM OF THE WORK: Many authors tried to clarify the palliative care nurses' role, overall in the home care setting, but little is known in different settings of care. We aim to present a Specialist profile of palliative care (PC) nurses in an Italian hospital-based Palliative Care Unit. METHODS: With an organizational case study approach, we conducted a literature review on PC nurse's role, and we presented the Specialist PC nurses' profile, describing competences and key related activities. RESULTS: Our specialist profile highlights that clinical activities are similar to the experiences described in the literature (symptom assessment and management, communication, interprofessional work), while training and research activities are new fields of interest that it's important to explore and promote, most of all in our country. CONCLUSIONS: Sustaining the flexibility of the role, being recognized by colleagues and keeping the three dimensions connected are the major challenges: drawing up a specialist palliative care nurses' profile can help the team to better define the role framework in an interdisciplinary context.
Nurses , Palliative Care , Hospitals , Humans , Italy , Qualitative Research
INTRODUCTION: Half of all patients with cancer experience cachexia, with the prevalence rising above 80% in the last weeks of life. Cancer cachexia (CC) is a complex relational experience that involves the patient-family dyad. There are no studies on the association between the psychoeducational component and the rehabilitative component of dyads for supporting more functional relationships in the management of CC.The primary objective of this study is to evaluate the feasibility of a psychoeducational intervention combined with a rehabilitative intervention on dyads.The secondary objective is to improve the quality of life (QoL) and acceptability of the intervention. METHODS AND ANALYSIS: This mixed-methods study with a nonpharmacological interventional prospective includes 30 consecutive cancer patients with cachexia and refractory cachexia and their caregivers, assisted by the Specialised Palliative Care Team. The recruitment will last 1 year. The intervention involves two components: (1) psychoeducational intervention: 3 weekly face-to-face consultations between dyads and trained nurses to help the dyads cope with involuntary weight loss and strengthening dyadic coping resources and (2) rehabilitation intervention: 3 biweekly educational sessions between dyads and trained physiotherapists focused on self-management, goal-setting, physical activity with three home exercise sessions per week.The primary endpoint will be in adherence to the intervention, indicated by a level of completion greater than or equal to 50% in both components. The secondary endpoints will be QoL (Functional Assessment of Anorexia-Cachexia Therapy), caregiver burden (Zarit Burden), physical performance (Hand-Grip strength and 30 seconds sit-to-stand test), and the acceptability of the intervention (ad hoc semi-structured interviews with the dyads and the healthcare professionals). ETHICS AND DISSEMINATION: The study was approved by the Ethics Committee Area Vasta Emilia Nord, Azienda USL-IRCSS Reggio Emilia, Italy, number: 73/2019/SPER/IRCCSRE. The authors will provide the dissemination of the results through publication in international scientific journals. TRIAL REGISTRATION NUMBER: NCT04153019.
Neoplasms , Quality of Life , Cachexia/therapy , Caregivers , Feasibility Studies , Humans , Italy , Neoplasms/complications , Prospective Studies
BACKGROUND: Quality of care for patients dying in hospital remains suboptimal. A major problem is the identification of valid sources of information about the views and experiences of dying patients and their relatives. AIM: This study aimed to estimate the agreement on quality of end-of-life care from the perspectives of bereaved relatives, physicians and nurses interviewed after the patients' death. DESIGN: In this prospective study, we interviewed, after the patient death, the bereaved relatives, the attending physicians and the reference nurses, using the Toolkit After-death Family Interview and the View Of Informal Carers-Evaluation of Services (VOICES). Agreement was assessed using Lin's concordance correlation coefficient, Cohen's kappa, overall concordance correlation coefficient and Fleiss' kappa. SETTING/PARTICIPANTS: We enrolled a consecutive series of 40 adult patients who died of cancer between January and December 2016 who had spent at least 48 hours in the medical oncology ward of the Santa Maria Hospital of Reggio Emilia, Italy. RESULTS: We interviewed all physicians and nurses, and 26 (65.0%) out of 40 relatives. We found a poor agreement on overall quality of care among the three proxies (+0.21; -0.04 to 0.44), between relatives and nurses (+0.05; -0.39 to +0.47), and between relatives and physicians (+0.25; -0.13 to +0.57). A similar poor agreement was observed for all the other Toolkit and VOICES scales. CONCLUSIONS: The agreement was rather poor, confirming previous results in different settings. Information from professional proxies should not be used for assessing the quality of care or for estimating missing information from bereaved relatives.
BACKGROUND: Despite the great advances in the concept of palliative care (PC) and its benefits, its application seems to be delayed, leaving unfulfilled the many needs of patients and family members. One way to overcome this difficulty could be to develop a new training programme by palliative care specialists to improve PC primary skills in healthcare professionals. The aim of this study was to evaluate the training's impact on trainees within a hospital setting using Kirkpatrick's and Moore's models. METHODS: We adopted a mixed-method evaluation with concurrent triangulation. The evaluation followed the first three steps of Kirkpatrick's and Moore's models and included a pre- and post-training evaluation through self-administered questionnaires and focus groups. We used the McNemar statistical test. RESULTS: The results highlighted the significant amount of knowledge acquired by the hospital professionals after training, in terms of increasing their knowledge of palliative care and in terms of the change in meaning that they attributed to phenomena related to chronicity and incurability, which they encounter daily in their professional practice. In both quantitative and qualitative research, the results, in synthesis, highlight: (i) the development of a new concept of palliative care, centred on the response to the holistic needs of people; (ii) that palliative care can also be extended to non-oncological patients in advanced illness stages (our training was directed to Geriatrics and Nephrology/Dialysis professionals); (iii) the empowerment and the increase in self-esteem that healthcare professionals gained, from learning about the logistical and structural organization of palliative care, to activate and implement PC; (iv) the need to share personal aspects of their professional life (this result emerges only in qualitative research); (v) the appreciation of cooperation and the joining of multiple competences towards a synergistic approach and enhanced outcomes. CONCLUSION: It is necessary to further develop rigorous research on training evaluation, at the most complex orders of the Kirkpatrick and Moore models, to measure primary PC skills in health care professionals. This will develop the effectiveness of the integration of I- and II-level palliative care competencies in hospitals and improve outcomes of patients' and families' quality of life.
Health Personnel/education , Palliative Care/standards , Teaching/standards , Focus Groups/methods , Health Personnel/statistics & numerical data , Humans , Palliative Care/methods , Palliative Care/statistics & numerical data , Program Evaluation/methods , Program Evaluation/statistics & numerical data , Qualitative Research , Surveys and Questionnaires , Teaching/statistics & numerical data
