"Jumping on the Blood Pressure Bandwagon": Nurse, GP, and Patient Perspectives of a General Practice Nurse-Led Hypertension Management Intervention.

To explore the perceptions and experiences of general practice nurses, general practitioners, and patients who participated in a nurse-led intervention to improve blood pressure control. Given the impact of hypertension on rates of premature death and disability, it is important that interventions be evaluated to reduce blood pressure. A key component of such evaluation is understanding the experiences of participants and clinicians. Understanding these experiences can provide insight into acceptability and feasibility that informs future research and implementation. Qualitative descriptive study within a mixed methods project. Semi-structured interviews were conducted post-intervention with six patients, five nurses, and three general practitioners. Interviews were audio-recorded, transcribed, and analyzed using thematic analysis. The COREQ checklist guided reporting. Three themes around the need for change, navigating change, and sustaining change were revealed. In highlighting the need for change, participants recognized that it was time to actively work toward improved blood pressure control. In navigating change, general practice nurses were perceived as ideally placed to communicate risks around uncontrolled blood pressure and support lifestyle change. The final theme, sustaining change revealed the feasibility of the intervention in practice, however, clinician participants identified that appropriate funding is required to ensure sustainability. Nurse-led intervention to improve blood pressure control in general practice is feasible in practice and acceptable to patients. This highlights an opportunity for nurses to play a more proactive role in hypertension management within general practice. To ensure sustainability, however, issues such as funding, teamwork, and collaboration need to be addressed. Trial Registration: Australian and New Zealand Clinical Trials Registry: ACTRN12618000169246.

Genetic testing in psychiatry, the perceptions of healthcare workers and patients: a mini review.

Background: Genetic testing in psychiatry has gained attention, raising questions about its application and impact. Understanding stakeholders' perspectives, including healthcare providers and patients, is vital for informed policy development. The aim of this systematic review was to focus on the perceptions and concerns of patients and healthcare workers in psychiatry regarding the use of genetic testing. Methods: We conducted a systematic review following PRISMA guidelines, for the period 1/2/2014, to 1/1/2024, via PubMed and Embase databases identifying 50 articles in total. After excluding duplicates (n = 12), 38 articles went through screening. After careful full-text article assessment for eligibility and applying the inclusion and exclusion criteria, only fifteen (n = 15) of the articles were included. Results: Among 15 selected studies involving 3,156 participants (2,347 healthcare professionals; 809 patients), thematic analysis identified four primary themes: Organizational-implementation concerns, Ethical Considerations, Concerns on changes in clinical praxis, and Legal implications. Despite these concerns, seven out of eleven studies indicated that healthcare workers viewed genetic testing in psychiatry positively. Patients' perspectives varied, with two of the four studies reflecting positive attitudes. No pervasive negative sentiment was observed. Conclusion: Our review highlights the multidimensional perspectives of healthcare professionals and patients surrounding the application of genetic testing in psychiatry. These considerations need to be addressed to facilitate the implementation of genetic testing in clinical praxis in psychiatry. Further research is needed for validation of the results and to guide policies and clinicians in the integration of genetic testing into mental healthcare practice.

The Potential Use and Value of a Wearable Monitoring Bracelet for Patients With Chronic Obstructive Pulmonary Disease: Qualitative Study Investigating the Patient and Health Care Professional Perspectives.

BACKGROUND: The occurrence of exacerbations has major effects on the health of people with chronic obstructive pulmonary disease (COPD). Monitoring devices that measure (vital) parameters hold promise for timely identification and treatment of exacerbations. Stakeholders' perspectives on the use of monitoring devices are of importance for the successful development and implementation of a device. OBJECTIVE: This study aimed to explore the potential use and value of a wearable monitoring bracelet (MB) for patients with COPD at high risk for exacerbation. The perspectives of health care professionals as well as patients were examined, both immediately after hospitalization and over a longer period. Furthermore, potential facilitators and barriers to the use and implementation of an MB were explored. METHODS: Data for this qualitative study were collected from January to April 2023. A total of 11 participants (eg, n=6 health care professionals [HCPs], 2 patients, and 3 additional patients) participated. In total, 2 semistructured focus groups were conducted via video calls; 1 with HCPs of various professional backgrounds and 1 with patients. In addition, 3 semistructured individual interviews were held with patients. The interviews and focus groups addressed attitudes, wishes, needs, as well as factors that could either support or impede the potential MB use. Data from interviews and focus groups were coded and analyzed according to the principles of the framework method. RESULTS: HCPs and patients both predominantly emphasized the importance of an MB in terms of promptly identifying exacerbations by detecting deviations from normal (vital) parameters, and subsequently alerting users. According to HCPs, this is how an MB should support the self-management of patients. Most participants did not anticipate major differences in value and use of an MB between the short-term and the long-term periods after hospitalization. Facilitators of the potential use and implementation of an MB that participants highlighted were ease of use and some form of support for patients in using an MB and interpreting the data. HCPs as well as patients expressed concerns about potential costs as a barrier to use and implementation. Another barrier that HCPs mentioned, was the prerequisite of digital literacy for patients to be able to interpret and react to the data from an MB. CONCLUSIONS: HCPs and patients both recognize that an MB could be beneficial and valuable to patients with COPD at high risk for exacerbation, in the short as well as the long term. In particular, they perceived value in supporting self-management of patients with COPD. Stakeholders would be able to use the obtained insights in support of the effective implementation of MBs in COPD patient care, which can potentially improve health care and the overall well-being of patients with COPD.

Patient, parent and professional expert perspectives on personalized regenerative implants: a qualitative focus group study.

Background: Perspectives of patients, parents and professional experts on personalized regenerative implants for regenerative medicine purposes are largely unknown.Method: To better understand these perspectives, we conducted four focus groups with professional experts of mixed European nationality (n = 8), Dutch patients with regular implants (n = 8), Dutch and Belgian (n = 5) and Spanish (n = 8) parents of children with cleft palate.Results: Two overarching themes were identified: 'patient-centered research and care' and 'ambivalent attitudes toward personalized regenerative implants'.Discussion: The results reveal that stakeholders should adopt a participatory rather than an impairment discourse and address the ambivalence among professional experts, patients and parents.Conclusion: Considering stakeholder perspectives facilitates ethical and responsible development and use of personalized regenerative implants.

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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.

Nurturing Resilient Health Ecosystems: What Can We Learn From Patient and Professional Experience?

Patients and professionals face important crises through their "normal" experiences of illness and care, which can either prepare them or make them more vulnerable to global crises. What can we learn from these experiences to nurture more resilient health ecosystems? In this commentary, we reflect on resilience in times of crisis, based on our lived experience as patient and physician. We learned that identifying "who is strong" and "who is vulnerable" can be surprising and unexpected, that patients and professionals can lean on one another at different stages of crises and that resilient health ecosystems require reciprocal, caring relationships at the individual and collective levels.

Patient, caregiver and professional views on preventable emergency admissions of older patients, a multi-method study in three Dutch hospitals.

BACKGROUND: Older adults are too often hospitalized from the emergency department (ED) without needing hospital care. Knowledge about rates and causes of these preventable emergency admissions (PEAs) is limited. This study aimed to assess the proportion of PEAs, the level of agreement on perceived preventability between physicians and patients, and to explore their underlying causes as perceived by patients, their relatives, and the admitting physician. METHODS: A multi-center multi-method study at the ED of one academic and two regional hospitals in the Netherlands was performed. All patients aged > 70 years and hospitalized from the ED were consecutively sampled during a six-week period. Quantitative data regarding patient and clinical characteristics and perceived preventability of the admission were prospectively collected from the electronical medical record and analyzed using descriptive statistics. Agreement on preventability between patient, caregivers and physicians was assessed by using the Cohen's kappa. Underlying causes of a PEA were subsequently collected by semi-structured interviews with patients and caregivers. Physician's perceived causes of a PEA were collected by telephone interviews and by open-ended questions sent by email. Thematic content analysis was used to analyze the interview transcripts and email narratives. RESULTS: Out of 773 admissions, 56 (7.2%) were deemed preventable by patients or their caregivers. Admitting physicians regarded 75 (9.7%) admissions as preventable. The level of agreement between these two groups was low with a Cohen's kappa score of 0.10 (p = 0.003). Perceived causes for PEAs related to six themes: (1) insufficient support at home, (2) suboptimal care in the community setting, (3) errors in hospital care, (4) time of presentation to ED and availability of resources, (5) delayed help seeking behavior, and (6) errors made by patients. CONCLUSIONS: Our findings contribute to the existing evidence that a substantial part (almost one out of ten) of the older adults visiting the ED is perceived as unnecessary hospital care by patients, caregivers and health care providers. Findings also provide valuable insight into the causes for PEAs from a patient perspective. Further research is needed to understand why the perspectives of those responsible for hospital admission and those being admitted vary considerably.

Research priorities for medically not yet explained symptoms expressed by patients, carers, and healthcare professionals in the Netherlands following the James Lind Alliance priority setting partnership approach.

OBJECTIVE: Experiencing physical symptoms that are medically not yet explained (MNYES) is associated with considerable burden in daily life. Research priorities in this area have been primarily investigator-driven. The present study identifies the top 10 research priorities, incorporating the views of patients, carers and healthcare professionals. METHODS: This study used the Priority Setting Partnership approach in collaboration with the James Lind Alliance (JLA). The priority setting approach combines survey-based data from patients with a specific disorder/condition and relevant stakeholders (i.e., caregivers and healthcare professionals) with input from group meetings and a final priority setting consensus meeting. There were three consecutive phases: (1) online survey with an open-ended question to collect topics for future scientific research (N = 345 participants); (2) an online survey among stakeholders to prioritise the research questions generated in Phase 1 (N = 400); and (3) a final multi-stakeholder consensus meeting, held over two half-days to determine the final top 10 research priorities for the Netherlands (day 1 N = 25, day 2 N = 24). RESULTS: Phase 1 resulted in 572 topics, which were reduced to 37 summary research questions. Phase 2 resulted in 18 research priorities, that were ranked and the top 10 priorities were established during the final consensus meeting. The top 10 research priorities included three main themes: optimising efficient diagnosis and treatment, aetiology and prevention, and coping with MNYES. CONCLUSION: The top 10 priorities provide insight into what is most important for future research into MNYES from the perspective of patients, carers and healthcare professionals.

Important aspects of experiences from patients and parents related to medications in Child and Adolescents Mental Health Services (CAMHS) - a qualitative study.

PURPOSE: Patient-reported experiences are a key source of information on quality in mental health care. Most patient experience surveys are limited to assessments from adults, including those conducted by parents or proxies on behalf of others. The aim of this study was to produce findings to inform development of modules on patient and parent experiences with medication in outpatient CAMHS in Norway, for use in previously validated instruments applied in national surveys. PATIENTS AND METHODS: We developed survey questions based on a systematic literature review, expert-group consultations, interviews with adolescents and parents, and pretesting of the modules in a pilot study. This study included adolescents aged 12-17 years and parents with experiences from outpatient CAMHS and we present findings from semi-structured interviews. RESULTS: Adolescents with ADHD emphasized the following aspects as important concerning medication use in CAMHS: positive effects of medication like better function and concentration in school and change of behaviour. They also stressed the importance of side effects such as eating problems, nausea, loss of appetite, insomnia, and changes in thoughts and feelings. In addition, adolescents highlighted the significance of aspects as support in daily routines for taking medications, while parents highlighted needs for a professional follow-up care. Parents emphasized aspects regarding their children's medication included both positive effects and change in behaviour, as well as their identification of negative side effects. CONCLUSION: Our findings from semi-structured interviews identified important aspects reported by both patients and parents on functions, side effects and follow-up care related to medication. The results indicated that both groups emphasized corresponding aspects of what was important regarding medication. However, when it came to follow-up care, the two groups highlighted distinct aspects, indicating differing priorities or concerns in this area.

Compassionate care through the eyes of patients and physicians: An interview study.

BACKGROUND: Although compassion is a crucial element of physicians' professional performance and high-quality care, research shows it often remains an unmet need of patients. Understanding patients' and physicians' perspectives on compassionate care may provide insights that can be used to foster physicians' ability to respond to patients' compassion needs. Therefore, this study aims to understand how both patients and physicians experience the concept and practice of compassionate care. METHODS: We conducted semi-structured interviews with eight patients and ten resident physicians at a University Medical Center in the Netherlands. Using thematic analysis, we separately coded patient and resident transcripts to identify themes capturing their experiences of compassionate care. This study was part of a larger project to develop an educational intervention to improve compassion in residents. RESULTS: For both patients and residents, we identified four themes encompassing compassionate care: being there, empathizing, actions to relieve patients' suffering, and connection. For residents, a fifth theme was professional fulfillment (resulting from compassionate care). Although patients and residents both emphasized the importance of compassionate care, patients did not always perceive the physician-patient encounter as compassionate. According to residents, high workloads and time pressures hindered their ability to provide compassionate care. DISCUSSION AND CONCLUSION: Patients and residents have similar and varying understandings of compassionate care at the same time. Understanding these differences can aid compassion in medical practice. Based on the findings, three topics are suggested to improve compassion in residents: (1) train residents how to ask for patients' compassion needs, (2) address residents' limiting beliefs about the concept and practice of compassion, and (3) acknowledge the art and science of medicine cannot be separated.

The opinions and experiences of nursing students, nurses, and patients regarding clinical practices: A mixed-methods study.

The aim of this mixed-methods study was to examine the experiences of nursing students (NSs), nurses, and patients regarding the clinical practices of NSs and to determine NSs' stress levels regarding clinical practices. The quantitative part of the study was completed with 240 NSs, and the "Perceived Stress Scale for Nursing Students" was used. In the qualitative part, the focus group interviews were held with 24 NSs, and the individual interviews were conducted with 15 patients and 20 nurses. Descriptive and stepwise regression analyses were used to analyze quantitative data, and narrative analysis was used to analyze qualitative data. Regression analysis determined that the age, grade point average, and attitude of mentors were associated with the perceived stress levels of NSs. In the narrative analysis of the data obtained from the interviews with NSs and nurses, four categories were identified: Emotions, Facilitators, Barriers, Roles, and Competencies. Three categories (Emotions, Problems, Roles, and Competencies) were identified from patient interviews. This study showed that NSs' clinical practice experiences were affected by many factors and experienced high stress during clinical practice.

Formulating cancer worries: How doctors establish medical expertise and authority to facilitate patients' care choices.

Video recordings of oncology interviews reveal how doctors rely on worry to establish medical expertise, facilitate treatment decision-making, and construct worry parameters to help patients understand whether there is a reasonable need for worry or not. Doctors express worry as frequently as cancer patients during oncology interviews, but they face a dilemma: how to provide care for cancer patients without directly stating they are worried about them? Plausible explanations are offered for why doctors do not state personal worries. Conversation analytic methods were employed to identify how doctors rely on worry to achieve distinct social actions. Four worry formulations are examined: (1) variations of "we worry" (and at times, non-specific and second person "you"), (2) hypothetical worry scenarios, (3) dismissing worry and offering assurance, and (4) doctors claiming they are not worried, bothered, or alarmed. Doctors align with and speak for the professionals and institutions they represent, expressing collective worries and claiming the legitimate right to worry (or not). Doctors also avoid abandoning patients to their own decision-making, yet do not formulate worry to coerce deference or dictate patients' choices. In all cases patients agreed and displayed minimal resistance to doctors' worry formulations. These findings contribute to ongoing work across institutional settings where participants have been shown to construct objective, legitimate claims meriting worries about diverse problems. Work is underway to examine when and how patients explicitly raise and doctors respond to cancer worries. Clinical implications are raised for how doctors can use worry to legitimize best treatment options, help patients minimize their worries, rely on hypothetical scenarios allowing patients to compare how other patients managed their cancer, and not dismiss the importance of minimizing the need to worry as a resource for offering reassurance.

Patients' and Caregivers' Suggestions for Improving Assisted Dying Regulation: A Qualitative Study in Australia and Canada.

INTRODUCTION: Assisted dying (AD) has been legalised in a small but growing number of jurisdictions globally, including Canada and Australia. Early research in both countries demonstrates that, in response to access barriers, patients and caregivers take action to influence their individual experience of AD, as well as AD systems more widely. This study analyses how patients and caregivers suggest other decision-makers in AD systems should address identified issues. METHODS: We conducted semistructured, qualitative interviews with patients and caregivers seeking AD in Victoria (Australia) and three Canadian provinces (British Columbia, Ontario and Nova Scotia). Data were analysed using reflexive thematic analysis and codebook template analysis. RESULTS: Sixty interviews were conducted with 67 participants (65 caregivers, 2 patients). In Victoria, this involved 28 interviews with 33 participants (32 caregivers, 1 patient) about 28 patient experiences. In Canada, this involved 32 interviews with 34 participants (33 caregivers, 1 patient) about 33 patient experiences. We generated six themes, corresponding to six overarching suggestions by patients and caregivers to address identified system issues: (1) improved content and dissemination of information about AD; (2) proactively develop policies and procedures about AD provision; (3) address institutional objection via top-down action; (4) proactively develop grief resources and peer support mechanisms; (5) amend laws to address legal barriers; and (6) engage with and act on patient and caregiver feedback about experiences. CONCLUSION: AD systems should monitor and respond to suggestions from patients and caregivers with firsthand experience of AD systems, who are uniquely placed to identify issues and suggestions for improvement. To date, Canada has responded comparatively well to address identified issues, whereas the Victorian government has signalled there are no plans to amend laws to address identified access barriers. This may result in patients and caregivers continuing to take on the burdens of acting to address identified issues. PATIENT OR PUBLIC CONTRIBUTION: Patients and caregivers are central to this research. We interviewed patients and caregivers about their experiences of AD, and the article focuses on their suggestions for addressing identified barriers within AD systems. Patient interest groups in Australia and Canada also supported our recruitment process.

Attitudes of patients and mental health professionals towards hypothetical use of serious games in psychotherapy.

Serious games are increasingly being applied within healthcare, but their integration in psychotherapeutic settings is less documented. OBJECTIVES: The present study sought to identify the attitudes of psychotherapists and patients towards the hypothetical use of serious games in psychotherapy in the South African context. METHODS: Online surveys assessed acceptance, experience, and requirements for the utilisation of serious games in therapeutic contexts. Clients utilising mental health services (n = 209) and psychotherapists delivering mental health services (n = 156) in South Africa completed the online survey. RESULTS: Knowledge about serious games is limited with only 15% of clients and 16% of therapists reporting knowledge of the existence and application of serious games. Use of serious games is even more infrequent with only 1% of therapists and 6% of clients currently using serious games as an intervention. Despite this, our findings highlight an apparent demand for their use, with 71% of therapists indicating that serious games would be a suitable adjunct treatment modality for their patients. Our results show a general openness toward the use of serious games in psychotherapy. CONCLUSION: The use of serious games as an e-mental health treatment modality is conceivable for both patients and therapists, particularly as a complementary strategy to traditional face-to-face psychotherapy.

Improving patients', carers' and primary care healthcare professionals' experiences of discharge communication from specialist palliative care to community settings: a protocol for a qualitative interview study.

BACKGROUND: Patients who have benefited from specialist intervention during periods of acute/complex palliative care needs often transition from specialist-to-primary care once such needs have been controlled. Effective communication between services is central to co-ordination of care to avoid the potential consequences of unmet needs, fragmented care, and poor patient and family experience. Discharge communications are a key component of care transitions. However, little is known about the experiences of those primarily receiving these communications, to include patients', carers' and primary care healthcare professionals. This study aims to have a better understanding of how the discharge communications from specialist palliative care services to primary care are experienced by patients, carers, and healthcare professionals, and how these communications might be improved to support effective patient-centred care. METHODS: This is a 15-month qualitative study. We will interview 30 adult patients and carers and 15 healthcare professionals (n = 45). We will seek a range of experiences of discharge communication by using a maximum variation approach to sampling, including purposively recruiting people from a range of demographic backgrounds from 4-6 specialist palliative care services (hospitals and hospices) as well as 5-7 general practices. Interview data will be analysed using a reflexive thematic approach and will involve input from the research and advisory team. Working with clinicians, commissioners, and PPI representatives we will co-produce a list of recommendations for discharge communication from specialist palliative care. DISCUSSION: Data collection may be limited by the need to be sensitive to participants' wellbeing needs. Study findings will be shared through academic publications and presentations. We will draft principles for how specialist palliative care clinicians can best communicate discharge with patients, carers, and primary care clinicians. These will be shared with clinicians, policy makers, commissioners, and PPI representatives and key stakeholders and organisations (e.g. Hospice UK) and on social media. Key outputs will be recommendations for a specialist palliative care discharge proforma. TRIAL REGISTRATION: Registered in ISRCTN Registry on 29.12.2023 ref: ISRCTN18098027.

Interdisciplinary research approach based on a mixed-methods design to explore patient altruism at the end of life: a study protocol.

INTRODUCTION: In the end of life context, patients are often seen as somewhat passive recipients of care provided by health professionals and relatives, with little opportunity to be perceived as autonomous and active agents. Since studies show a very high prevalence of altruistic dispositions in palliative care patients, we strive to investigate the concept of patient altruism in a set of six interdisciplinary studies by considering three settings: (1) in the general palliative context-by studying to what extent patient altruism is associated with essential psychological outcomes of palliative care (subproject 1a), how altruism is understood by patients (subproject 1b) and how altruism expressed by patients is experienced by palliative care nurses (subproject 1c); (2) in two concrete decision-making contexts-advance care planning (subproject 2a) and assisted suicide (subproject 2b); and (3) through verbal and non-verbal patient communication in palliative care settings (subproject 3). METHODS AND ANALYSIS: Subproject 1a: a cross-sectional study using validated and standardised questionnaires. Subprojects 1b and 1c: a constructivist grounded theory method aiming at developing a novel theory from semistructured interviews in both patients and nurses. Subproject 2a: a thematic analysis based on (1) audio-recordings of advance care planning encounters and (2) follow-up semidirective interviews with patients and their relatives. Subproject 2b: a qualitative study based on thematic analysis of interviews with patients actively pursuing assisted suicide and one of their relatives.Subproject 3: a conversation analysis based on audio and video-recorded interactions in two settings: (1) palliative inpatient unit and (2) advance care planning discussions. ETHICS AND DISSEMINATION: The study project was approved by the Ethics Committees of the Canton of Vaud, Bern and Ticino (no: 2023-00088). In addition to participation in national and international conferences, each project will be the subject of two scientific publications in peer-reviewed journals. Additional publications will be realised according to result triangulation between projects. A symposium opened to professionals, patients and the public will be organised in Switzerland at the end of the project.

Patient and relative experiences of the ReSPECT process in the community: an interview-based study.

BACKGROUND: The Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) was launched in the UK in 2016. ReSPECT is designed to facilitate meaningful discussions between healthcare professionals, patients, and their relatives about preferences for treatment in future emergencies; however, no study has investigated patients' and relatives' experiences of ReSPECT in the community. OBJECTIVES: To explore how patients and relatives in community settings experience the ReSPECT process and engage with the completed form. METHODS: Patients who had a ReSPECT form were identified through general practice surgeries in three areas in England; either patients or their relatives (where patients lacked capacity) were recruited. Semi-structured interviews were conducted, focusing on the participants' understandings and experiences of the ReSPECT process and form. Data were analysed using inductive thematic analysis. RESULTS: Thirteen interviews took place (six with patients, four with relatives, three with patient and relative pairs). Four themes were developed: (1) ReSPECT records a patient's wishes, but is entangled in wider relationships; (2) healthcare professionals' framings of ReSPECT influence patients' and relatives' experiences; (3) patients and relatives perceive ReSPECT as a do-not-resuscitate or end-of-life form; (4) patients' and relatives' relationships with the ReSPECT form as a material object vary widely. Patients valued the opportunity to express their wishes and conceptualised ReSPECT as a process of caring for themselves and for their family members' emotional wellbeing. Participants who described their ReSPECT experiences positively said healthcare professionals clearly explained the ReSPECT process and form, allocated sufficient time for an open discussion of patients' preferences, and provided empathetic explanations of treatment recommendations. In cases where participants said healthcare professionals did not provide clear explanations or did not engage them in a conversation, experiences ranged from confusion about the form and how it would be used to lingering feelings of worry, upset, or being burdened with responsibility. CONCLUSIONS: When ReSPECT conversations involved an open discussion of patients' preferences, clear information about the ReSPECT process, and empathetic explanations of treatment recommendations, working with a healthcare professional to co-develop a record of treatment preferences and recommendations could be an empowering experience, providing patients and relatives with peace of mind.