Caring through uncertainty: a qualitative exploration of older colorectal cancer caregivers' experiences during palliative chemotherapy.

PURPOSE: Despite the increasing research on cancer patient caregivers, there is still a lack of detailed understanding about the experiences of spouses caring for elderly colorectal cancer patients. This study aimed to fill this gap by examining the caregiving experiences of spouses during palliative chemotherapy for elderly Chinese colorectal cancer patients. METHODS: Using a qualitative descriptive design, we recruited spousal caregivers of elderly colorectal cancer patients undergoing palliative chemotherapy. Semistructured interviews were conducted, and thematic analysis was employed to analyse the data. RESULTS: Sixteen caregivers aged 60 to 82 years participated in the interviews. The analysis revealed three main themes: ambivalence, multiple role adaptation to conflicts, and the coexistence of hope and pressure. These themes shed light on the behaviors of older caregivers and the challenges they face, including physical and psychosocial issues associated with aging. CONCLUSION: This study highlights the significant stress and challenges experienced by older caregivers, characterized by intertwined emotions such as anxiety about their spouses' health deterioration, exhaustion from long-term care responsibilities, and anticipation of treatment outcomes.

"You close the door, wipe your sadness and put on a smiling face": a qualitative study of the emotional labour of healthcare professionals providing palliative care in nursing homes in France.

BACKGROUND: Palliative care provided to frail and dying older persons in nursing homes results in intense emotions for residents and their relatives as well as for healthcare professionals. In France, scant attention has been given to how nursing home professionals manage their emotions when providing palliative care. This study analysed the emotional demands of providing palliative care in the nursing home context, the emotional strategies used by healthcare professionals to navigate such demands, and how these demands affect their emotional wellbeing. METHODS: This qualitative study used a multiple case study approach. We purposively selected nine nursing homes from three geographical provinces in France with diverse ownership statuses (public, private, associative). Individual interviews and focus group discussions were held with 93 healthcare professionals from various occupational groups employed in the participating nursing homes. Data was collected from April 2021 to September 2022 and was analysed using thematic content analysis. RESULTS: Data revealed that providing palliative care to dying residents within the nursing home context results in intertwined rewarding and exhausting emotional experiences for healthcare professionals. Professionals have to utilize multifaceted emotional strategies to navigate these experiences, including suppressing and modifying emotions and distancing themselves emotionally from residents to protect themselves from emotional suffering. Participants noted a lack of formal space to express emotions. Unrecognized emotional labour undermines the wellbeing of healthcare professionals in nursing homes, whereas acknowledging emotions enhances satisfaction and gives enhanced meaning to their crucial role in resident care. CONCLUSION: Acknowledging emotional labour as an inevitable component of providing palliative care in nursing homes is critical to supporting healthcare professional wellbeing, resilience, and retention, which may ultimately improve the quality of care for dying residents. Ensuring quality care and supporting the emotional wellbeing of nursing home professionals requires an organisational culture that considers emotional expression a collective strength-building resource rather than an individual responsibility, in hopes of shaping a new culture that fully acknowledges their humanity alongside their professional skills. TRIAL REGISTRATION: ClinicalTrials.gov ID: NCT04708002; National registration: ID-RCB number: 2020-A01832-37, Registration date: 2020-12-03.

Knowledge, attitudes, and barriers: Palliative Care services for women with HIV in resource-limited settings.

BACKGROUND: Women living with HIV (WLWH) in low- middle-income countries (LMICs) face increased mortality risks from comorbidities despite progress in antiretroviral therapy. Palliative care (PC) is vital for these patients, yet its integration in LMICs, such as Nigeria, is suboptimal due to unique challenges. OBJECTIVE: This study investigated the knowledge, perceived barriers, and facilitators influencing PC integration into routine HIV care within healthcare (HC) settings. METHODOLOGY: A cross-sectional survey was conducted among WLWH in twelve HC facilities throughout Nigeria. Data collection involved surveys focused on PC knowledge, attitudes, facilitators, and barriers. Logistic regression analyses were employed to examine the data. RESULTS: This study revealed significant gaps in knowledge and attitudes towards PC among HIV + women at NISA-MIRCs. Over 90% were unaware of PC services, but many saw its potential to offer hope (55%) and improve quality of life (56.5%). The key predictors of PC knowledge included education, occupation, religion, having fewer children, urban residence, type of residence, and having a high income (p < .05). Despite the willingness to access PC, barriers such as negative HC worker attitudes, perceived high cost, and limited decision autonomy could hinder integration. Facilitators included low-cost services, positive HCW attitudes, physician recommendations, and perceived necessity for personal well-being. CONCLUSION: Knowledge gaps, diverse attitudes, and significant barriers highlight the need for targeted PC interventions for WLWH. Tailoring educational programs, addressing cost barriers, and improving healthcare infrastructure are crucial to enhancing PC accessibility and quality. These findings can guide policymakers and HC practitioners toward more effective and inclusive care strategies.

Trainee district nurses' understanding and perceptions of the palliative care key worker role: a qualitative study.

BACKGROUND: The district nurse is identified as a keyworker in community based palliative care. However, a dearth of research exists on trainees' views and understanding of adopting the role upon qualification. AIMS: The aim of this study was to explore the understanding and perceptions of district nurse trainees in relation to the palliative care key worker role. METHODS: Data was gathered via online semi-structured interviews (n=10) and the results were analysed using a thematic model. FINDINGS: The four evolving themes included: understanding of the palliative care key worker role scope and function; the level of preparation for the role; a juggling act and embedding the role in practice. CONCLUSION: The themes highlighted various drivers and barriers that reflect a degree of incongruence with policy and practice. Recommendations to standardise the palliative care key worker role, underpinned by formal preparation and clearly defined responsibilities may enhance future development and implementation of the role.

Experiences of patients with advanced chronic diseases and their associates with a structured palliative care nurse visit followed by an interprofessional case conference in primary care - a deductive-inductive content analysis based on qualitative interviews (KOPAL-Study).

BACKGROUND: Chronic, non-malignant diseases (CNMD) like chronic obstructive pulmonary disease (COPD), congestive heart failure (CHF) and dementia in advanced stages are very burdensome for patients. Timely palliative care with strong collaboration between general practitioners (GPs) and specialist palliative home care (SPHC) teams can reduce symptom burden, hospitalization rates, hospitalization costs and overall healthcare costs. The KOPAL-study on strengthening interprofessional collaboration for patients with palliative care needs tested the effect of an intervention comprising of a SPHC nurse assessment and an interprofessional case conference. This qualitative evaluative study explores patients', proxies' and their associates' motivation to participate in the KOPAL-study and views on the (benefits of the) intervention. METHODS: We interviewed 13 male and 10 female patients as well as 14 proxies of patients with dementia and six associates of study participants using a semi-structured interview guide. All interviews were digitally recorded, transcribed verbatim and analysed with deductive-inductive qualitative content analysis. RESULTS: Motivation for participation was driven by curiosity, the aim to please the GP or to support research, respectively to help other patients. Few interviewees pointed out to have expected positive effects for themselves. The nurse visit was evaluated very positively. Positive changes concerning health care or quality of life were reported sparsely. Most study participants did not prepare for the SPHC nurse assessment. They had no expectations concerning potential benefits of such an assessment, the interdisciplinary case conference and an early integration of palliative care. The majority of interviewees reported that they did not talk about the nurse visit and the interprofessional case conference with their GPs. CONCLUSION: Our results lead to the conclusion that SPHC nurses can serve as an advocate for the patient and thereby support the patients' autonomy. GPs should actively discuss the results of the interdisciplinary case conference with patients and collaboratively decide on further actions. Patient participation in the interdisciplinary case conference could be another way to increase the effects of the intervention by empowering patients to not just passively receive the intervention. TRIAL REGISTRATION: DRKS00017795 German Clinical Trials Register, 17Nov2021, version 05.

Updating a conceptual model of effective symptom management in palliative care to include patient and carer perspective: a qualitative study.

BACKGROUND: A conceptual model of effective symptom management was previously developed from interviews with multidisciplinary healthcare professionals (HCP) working in English hospices. Here we aimed to answer the question; does a HCP data-derived model represent the experience of patients and carers of people with advanced cancer? METHODS: Semi-structured interviews were undertaken with six patients with advanced cancer and six carers to gain an in-depth understanding of their experience of symptom management. Analysis was based on the framework method; transcription, familiarisation, coding, applying analytical framework (conceptual model), charting, interpretation. Inductive framework analysis was used to align data with themes in the existing model. A deductive approach was also used to identify new themes. RESULTS: The experience of patients and carers aligned with key steps of engagement, decision making, partnership and delivery in the HCP-based model. The data aligned with 18 of 23 themes. These were; Role definition and boundaries, Multidisciplinary team decision making, Availability of services/staff, Clinician-Patient relationship/rapport, Patient preferences, Patient characteristics, Quality of life versus treatment need, Staff time/burden, Psychological support -informal, Appropriate understanding, expectations, acceptance and goals- patients, Appropriate understanding, expectations, acceptance and goals-HCPs, Appropriate understanding, expectations, acceptance and goals- family friends, carers, Professional, service and referral factors, Continuity of care, Multidisciplinary team working, Palliative care philosophy and culture, Physical environment and facilities, Referral process and delays. Four additional patient and carer-derived themes were identified: Carer Burden, Communication, Medicines management and COVID-19. Constructs that did not align were Experience (of staff), Training (of staff), Guidelines and evidence, Psychological support (for staff) and Formal psychological support (for patients). CONCLUSIONS: A healthcare professional-based conceptual model of effective symptom management aligned well with the experience of patients with advanced cancer and their carers. Additional domains were identified. We make four recommendations for change arising from this research. Routine appraisal and acknowledgement of carer burden, medicine management tasks and previous experience in healthcare roles; improved access to communication skills training for staff and review of patient communication needs. Further research should explore the symptom management experience of those living alone and how these people can be better supported.

Psychological stress of general practitioners in the care of patients with palliative care needs: an exploratory study.

BACKGROUND: In Germany, general practitioners play a pivotal role in palliative care provision. Caring for patients with palliative care needs can be a burden for general practitioners, highlighting the importance of self-care and mental health support. This study aimed to explore the role of palliative care in general practitioners' daily work, the stressors they experience, their coping mechanisms, and the potential benefits of Advance Care Planning in this context. METHODS: An exploratory approach was employed, combining a short quantitative survey with qualitative interviews. The analysis was based on a structuring qualitative content analysis, following a deductive-inductive procedure and integrating the Stress-Strain Model and Lazarus' Transactional Model of Stress and Coping. We recruited eleven general practitioners to take part in the study. RESULTS: General practitioners viewed palliative care as integral to their practice but faced challenges such as time constraints and perceived expertise gaps. Societal taboos often hindered conversations on the topic of death. Most general practitioners waited for their patients to initiate the topic. Some general practitioners viewed aspects of palliative care as potentially distressing. They used problem-focused (avoiding negative stressors, structuring their daily schedules) and emotion-focused (discussions with colleagues) coping strategies. Still, general practitioners indicated a desire for specific psychological support options. Advance Care Planning, though relatively unfamiliar, was acknowledged as valuable for end-of-life conversations. CONCLUSIONS: Palliative care can be associated with negative psychological stress for general practitioners, often coming from external factors. Despite individual coping strategies in place, it is advisable to explore concepts for professional psychological relief. TRIAL REGISTRATION: Not registered.

Special considerations in managing pain and psychosocial distress in patients with opioid use disorder and cancer: the role of the supportive care and psycho-oncology interdisciplinary team.

People with a substance use disorder (SUD) have shortened lifespans due to complications from their substance use and challenges engaging with traditional health care settings and institutions. This impact on life expectancy is especially prominent in patients with co-occurring SUDs and cancer, and often has a much worse prognosis from the cancer than a similar patient without a SUD. Palliative care teams are experts in serious illness communication and symptom management and have become increasingly embedded in the routine care of patients with cancer. We argue that the skill set of palliative care teams is uniquely suited for addressing the needs of this oft marginalized group. We provide a comprehensive review of tools for addressing these needs, including medications that can both treat pain and opioid use disorder (OUD), and highlight psychosocial approaches to treating patients with OUD and cancer in a way that is respectful and effective. Using a trauma informed framework, we focus on the application of harm reduction principles from addiction medicine and the principles of clear communication, accompaniment, and emotional presence from palliative care to maximize support. We also focus on ways to reduce stigma in the delivery of care, by providing language that reduces barriers and increases patient engagement. Finally, we describe a clinic embedded within our institution's cancer center which aims to serve patients with cancer and SUDs, built on the framework of harm reduction, accompaniment and trauma informed care (TIC). Overall, we aim to provide context for addressing the common challenges that arise with patients with cancer and OUD, including the direct impact of psychosocial stress on substance use and cancer treatment, delays in disease directed treatment that can potentially impact further treatment options and outcomes, challenging pain management due to greater opioid debt, and potential loss of primary coping mechanism through substance use in the face of potential terminal diagnosis.

[Anxiety and fear at the end of life]. / Angst und Furcht am Lebensende.

INTRODUCTION: Fears and anxieties are a common cause of suffering for patients at the end of life. These are often either fears about dying - for example, fear of unbearable pain or fear of suffocation - or fear of death itself. If unrecognized and untreated, fears and anxieties can contribute to a considerable reduction in the quality of life in the last phase of life. Careful diagnosis of anxiety and fear is therefore crucial. Multimodal treatment, which includes psychotherapy and other non-pharmacological and - if necessary - pharmacological treatments, can provide significant relief.

Knowledge and training among nursing students regarding the conspiracy of silence in palliative care: A participatory action research.

AIM: To develop and implement specific training based on the knowledge and management of conspiracy of silence among nursing students. BACKGROUND: Conspiracy of silence refers to the concealment of information from a patient on the family's request, under the influence of a paternalistic culture that seeks to protect the patient. DESIGN: Participatory action research. METHODS: Was conducted in the following stages: reconnaissance (focus groups); planning, action and observation (theoretical sessions); and reflection (analysis of care plans). The focus group consisted of six fourth year and eight second-year students. The intervention was conducted with 42 s-year students and a total of 93 s-year students participated in the resolution of the clinical case. The study was conducted between October 2022 and June 2023 at the Faculty of Nursing, University of Valencia. For data analysis, the process described by Carrillo et al. (2011) was followed, involving coding and the creation of categories and subcategories. RESULTS: The focus group deficiencies were detected in the students' learning of palliative care competence, breaking bad news and the conspiracy of silence (reconnaissance stage). Therefore, an intervention was conducted to reinforce these knowledge areas, specifically addressing the conspiracy of silence (planning, action and observation stages). The resolution of the case showed how students with training approached the situation more comprehensively, including the family and proposed activities that were consistent with managing the situation (reflection stage). CONCLUSIONS: An active feedback process was successfully established, where the students' feedback helped create specific training on oncological palliative care and provided the students with tools to manage the conspiracy of silence. The results underscore the importance of providing students with training in palliative care and managing conspiracy of silence, through therapeutic communication training, active training or enhancing emotional intelligence. This training is essential for cultivating the attitudes and skills required to deliver high-quality palliative care.

Flourishing at the end of life.

Flourishing is an increasingly common construct employed in the study of human wellbeing. But its appropriateness as a framework of wellbeing at certain stages of life is contested. In this paper, we consider to what extent it is possible for someone to flourish at the end of life. People with terminal illness often experience significant and protracted pain and suffering especially when they opt for treatments that prolong life. Certain aspects of human goods, however, that are plausibly constitutive of flourishing-such as meaning and purpose, deep personal relationships, and character and virtue-can be uniquely realised when life is ending. We argue that there is a qualified sense in which one can flourish at the end of life but that one must make important modifications to the criteria implicit in conventional conceptions of flourishing. We close with a discussion of the empirical assessment of wellbeing at the end of life and explore the possibility of introducing a flourishing measure in palliative care practice.

The influence of care home registration type and size on senior care leader's confidence to provide palliative and end-of-life care: an explanatory sequential mixed methods study.

BACKGROUND: Care home staff are key providers of palliative and end-of-life care. Yet, little is known about how care home characteristics can influence care leader's confidence in their ability to provide optimal palliative and end-of-life care. AIM: To understand the influence of care home registration type (nursing, residential or dual registered) and size on senior care leader's confidence to provide palliative and end-of-life care. DESIGN: An explanatory sequential mixed methods study comprising an online cross-sectional survey (including the Palliative Care Self-Efficacy Scale) and qualitative individual interviews. Analysis of survey data used a multivariate logistic regression and qualitative interview data used Framework Analysis. A 'Following the Thread' method was undertaken for data integration. SETTING/PARTICIPANTS: UK care home senior care leaders, purposively sampled by registration type, size and geographical location. RESULTS: The online survey (N = 107) results indicated that nursing home senior care leaders had higher confidence scores on the Palliative Care Self-Efficacy Scale than residential care home leaders (aOR: 3.85, 95% CI 1.20-12.31, p = 0.02). Care home size did not show effect when adjusting for registration type (medium - aOR 1.71, 95% CI 0.59-4.97, p = 0.33; large - aOR 0.65, 95% CI 0.18-2.30, p = 0.5). Interviews (n = 27) identified three themes that promote confidence, (1) 'feelings of preparedness' stemming from staff expertise and experience and care home infrastructure, (2) 'partnership working' with external services as a valued member of the multidisciplinary team, and (3) a shared language developed from end-of-life care guidance. CONCLUSION: Care home senior care leader's confidence is influenced by care home characteristics, particularly availability of on-site registered nurses and the infrastructure of large care homes. All care home leaders benefit from training, working with external, multidisciplinary teams and use of guidance. However, mechanisms to achieve this differed by care home type and size. Further exploration is needed on successful integration of palliative care services and interventions to enhance confidence in residential care homes.

The CAREPAL-8: a short screening tool for multidimensional family caregiver burden in palliative care.

BACKGROUND: Family caregivers of terminally ill and dying people do not only experience varying levels but also different dimensions of caregiver-related strain and burden. The aim of the study was to develop a short multidimensional screening tool for the detection of burden in family caregivers in palliative care. METHODS: Family caregivers of cancer patients newly admitted to specialist inpatient palliative care (N = 232) completed questionnaires on psychological burden, quality of life, social support and need fulfillment. A latent class mixture model was used to identify discrete classes of family caregivers related to their multidimensional caregiver burden. Multinomial logistic regression analyses were performed to identify the most predictive items from a set of established questionnaires. RESULTS: Four latent classes of family caregivers were identified: Currently stable caregivers (37%), Caregivers with unmet needs (20%), Psychologically burdened caregivers (30%), and High-risk caregivers (13%). Each of these classes describes a different risk profile of multidimensional family caregiver burden, although family caregivers exhibit high levels of distress across all classes. From a set of 48 items, we identified eight items that predicted the class membership best. These items represent the items of the novel multidimensional screening tool: The 8-item Screening Tool for Family Caregiver Burden in Palliative Care (CAREPAL-8). Except for social support, the items maintained fidelity to the conceptualization of multidimensional caregiver burden used in this study. A preliminary classification system was developed, which has yet to be validated. CONCLUSIONS: This study represents the first step in the establishment of a practical, self-administered screening tool that might help healthcare providers to tailor caregiver care according to their burden in daily practice. Brevity of the 8-item tool might facilitate its use in routine clinical care.

Collaboration, coordination and communication as facilitators of transitions for patients with advanced cancer: a scoping review linked to the Pal-Cycles project.

BACKGROUND: Person-centred care is becoming increasingly recognised as an important element of palliative care. The current review syntheses evidence in relation to transitions in advanced cancer patients with palliative care needs. The review focuses on specific elements which will inform the Pal-Cycles programme, for patients with advanced cancer transitioning from hospital care to community care. Elements of transitional models for cancer patients may include, identification of palliative care needs, compassionate communication with the patient and family members, collaborative effort to establish a multi-dimensional treatment plan, review and evaluation of the treatment plan and identification of the end of life phase. METHODS: A scoping review of four databases (MEDLINE, EMBASE, CINAHL, PsycINFO) was conducted to identify peer-reviewed studies published from January 2013 to October, 2022. A further hand-search of references to locate additional relevant studies was also undertaken. Inclusion criteria involved cancer patients transitions of care with a minimum of two of components from those listed above. Studies were excluded if they were literature reviews, if transition of care was related to cancer survivors, involved non-cancer patients, had paediatric population, if the transition implied a change of therapy and or a lack of physical transit to a non-hospital place of care. This review was guided by Arksey and O'Malley's framework and narrative synthesis was used. RESULTS: Out of 5695 records found, 14 records were selected. Transition models identified: increases in palliative care consultations, hospice referrals, reduction in readmission rates and the ability to provide end of life care at home. Transition models highlight emotional and spiritual support for patients and families. No uniform model of transition was apparent, this depends on the healthcare system where it is implemented. CONCLUSIONS: The findings highlight the importance of collaboration, coordination and communication as central mechanisms for transitional model for patients with advanced cancer. This may require careful planning and will need to be tailored to the contexts of each healthcare system.

Bittersweet Prognostication.

In this narrative medicine essay, a pediatric critical care physician explores the right moment to speak with parents about their child's life or death outcome, relying on the various elements involved in predicting an iffy endeavor.

Multidisciplinary oncology clinicians' experiences delivering spiritual care to patients with cancer and their care partners.

PURPOSE: To understand multidisciplinary healthcare clinicians' meaningful and challenging experiences providing spiritual care to patients with cancer and their care partners. METHODS: Multidisciplinary clinicians who participated in a communication training program supported by the National Cancer Institute or a palliative care training for nurses (N = 257) responded to two, open-ended questions about meaningful and challenging experiences of providing spiritual care. A thematic analysis of responses using an iterative, inductive approach was conducted until saturation was reached. RESULTS: Participants from nursing (68%), social work (22%), and chaplaincy (10%) responded to open-ended survey questions. Three themes related to meaningful experiences of providing spiritual care emerged: building authentic interpersonal connection with patients and care partners; creating intentional space for patients and care partners to inform spiritual care; and actively supporting patients and care partners in their processes with spirituality. Three themes related to challenging experiences of providing spiritual care emerged: contextual factors and clinical circumstances complicate provision of spiritual care; facing barriers to providing high-quality, patient-centered care; and navigating ethical and logistical issues that affect spiritual and other care. CONCLUSION: Clinicians derive meaning from a range of experiences throughout their provision of spiritual care to patients with cancer. However, they also face many challenges in delivering person-centered spiritual care in cancer settings, with some challenges reflecting significant gaps in spiritual care knowledge and training. Findings can guide future training and educational endeavors for multidisciplinary clinicians in the domain of spiritual care.

Effect of logotherapy counseling program on chronic sorrow, dignity, and meaning in life of palliative care patients: a randomized controlled trial.

PURPOSE: Palliative care patients experience chronic sorrow with loss in dignity and meaning in life. Logotherapy is an effective way to cope with loss. This study aimed to evaluate the effect of logotherapy on chronic sorrow, dignity, and meaning in life of palliative care patients. METHODS: This study was conducted with 58 adults hospitalized due to advanced cancer and assigned to either intervention or control group by simple randomization. Data were collected with descriptive information form, Palliative Performance Scale, Patient Dignity Inventory (PDI), Prolonged Grief Disorder Scale-Patient Form (PGDS-PF), and Meaning in Life Questionnaire (MIL) on admission, at the 4th and 8th weeks. The intervention group received eight sessions of logotherapy. The control group received routine care. RESULTS: The mean scores of PGDS-PF (p = 0.01), PDI (p = 0.01), and searched meaning subdimension of MIL (MIL-SM) (p = 0.11) decreased in the intervention group compared to controls, both at the 4th and 8th week evaluation. The mean score of the present meaning subdimension of MIL (MIL-PM) (p = 0.02) increased at the 4th week evaluation but decreased at a non-statistically significant level at the 8th week. The mean scores of PGDS-PF and PDI increased in the control group while MIL-PM and MIL-SM decreased, both at the 4th and 8th week evaluation. CONCLUSIONS: Logotherapy was found effective in decreasing the sorrow and dignity-related distress of palliative care patients, while increasing finding meaning in life. Logotherapy is recommended to be used by palliative care professionals to empower patients. TRIAL REGISTRATION: Clinicaltrials registration number and date: NCT05129059, 19/01/2021.

Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end-of-life.

BACKGROUND: Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long-term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end-of-life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries. RESEARCH DESIGN AND OBJECTIVE: An interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention. FINDINGS: Thirty-eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI. DISCUSSION AND IMPLICATIONS: International projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources. PATIENT OR PUBLIC CONTRIBUTION: PPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript.