Importance of patient and public involvement in doctoral research involving people living with dementia.

BACKGROUND: There is increasing recognition of the need to include patients and the public in the research process. There is extensive literature about patient and public involvement (PPI) in research, but fewer articles report on PPI in doctoral research. AIM: To reflect on establishing an advisory group for a doctoral study, exploring the opportunities and challenges associated with including patients with dementia in the research process. DISCUSSION: The authors discuss the practicalities of establishing an advisory group, the challenges of being a novice researcher, long-term commitment to PPI, the overall approach to PPI and ethical considerations. CONCLUSION: Establishing an advisory group for a doctoral study can facilitate mutual learning and enhance the study's quality. IMPLICATIONS FOR PRACTICE: Achieving high-quality PPI in health and social care research can ultimately improve its quality and relevance. An important aspect of the doctoral journey is developing knowledge and skills to facilitate PPI as part of a researcher's apprenticeship.

Perceptions of peritonitis risk, prevention, diagnosis and stigma: Findings from a mixed methods study with patients and relatives using peritoneal dialysis.

BACKGROUND: Peritonitis is the main treatment-related complication of peritoneal dialysis and a primary concern for patients and their relatives. Therefore, understanding their perceptions of peritonitis is important. OBJECTIVES: To explore patients' and relatives' perceptions of peritoneal dialysis-associated peritonitis risk, prevention measures and experiences of diagnosis, and experience of perceived stigma. DESIGN: A sequential mixed methods study design was used, including a questionnaire and semi-structured interviews. PARTICIPANTS: Patients using peritoneal dialysis and relatives (n = 75) from six National Health Service organisations from the United Kingdom. MEASUREMENTS: A structured questionnaire was administered with patients and relatives (n = 75) using peritoneal dialysis; data were analysed using descriptive statistics. Thirty questionnaire respondents were then purposively sampled and interviewed in-depth; data were analysed thematically. Data were collected 2017-2018. Ethical and governance approvals were gained. RESULTS: Qualitative and quantitative analyses were integrated and three themes presented: • Perceptions of risk: participants assessed their risk of developing peritonitis and possible implications on their health and relatives. Participants felt greatly responsible for preventing infection. • Preventing peritonitis: participants reported similar and some differing measures to minimise their risk of developing peritonitis. Participants wanted to be seen as "clean". • Diagnosis of peritonitis: peritonitis diagnosis was embarrassing and stigmatising for many individuals. This was influenced by the response of healthcare professionals and the cause of peritonitis. CONCLUSIONS: It is important that healthcare professionals are aware of how responsible patients and relatives feel about preventing peritonitis, the emotional effect of this responsibility and crucially the impact this may have on seeking help.

The clinical decision-making process involved in end of life care for people with dementia in primary care: A protocol paper.

AIM: This article is a report of a study protocol designed to explore what factors inform healthcare professionals' clinical decision-making when providing end of life care for people with dementia in primary care. DESIGN: The proposed study will adopt a qualitative study design, utilizing an ethnographic approach. METHODS: A mixed sample group of registered healthcare professionals, including district nurses, specialist nurses and general practitioners, will be purposively sampled and recruited from one health board in Wales, which will cover three settings in primary care. A multi-method approach will be utilized to provide rich data, including non-participant observation, semi-structured interviews, and review of key documents. Data will be managed using NVivo 12 and analysed thematically. Ethics approval was gained in April 2022. DISCUSSION: Little is known about the end of life care decision-making process of healthcare professionals caring for people with dementia in primary care settings. This study will therefore address this pertinent gap. The study findings may also be transferable to healthcare professionals working in similar clinical settings across the UK. IMPACT: It is anticipated that this study will inform the subsequent development of an intervention that can be used by healthcare professionals to support decision making and subsequently the provision of quality end of life care in primary care for people with dementia.

Seeking help for peritoneal dialysis-associated peritonitis: Patients' and families' intentions and actions. A mixed methods study.

AIMS: To examine patients' and families' help-seeking intentions and actions when suspecting peritoneal dialysis-associated peritonitis. DESIGN: A sequential explanatory mixed methods design was used, comprising a questionnaire and semi-structured interviews. METHODS: A questionnaire was designed, piloted and used with patients and family members (n=75) using peritoneal dialysis from six hospital sites in Wales and England. Questionnaire data were analysed using descriptive statistics. A purposive sample of questionnaire participants (n=30) then took part in telephone or face-to-face semi-structured interviews. Interview data were analysed thematically. Data were collected between September 2017 and August 2018. Ethical and governance approvals were obtained; the study was reported on national research portfolios. RESULTS: The quantitative data highlighted differences between participants' knowledge of when they should seek help for suspected peritonitis and their actions when they subsequently experienced peritonitis. The interview data revealed the complexities involved with recognizing peritonitis, making the decision to seek help and accessing healthcare. Some participants struggled to recognize peritonitis when signs/symptoms started, leading to delays in deciding to seek help. Furthermore, some participants reported that they accessed help from renal or generic out-of-hours and were misadvised or misdiagnosed, delaying diagnosis and treatment. The data were integrated using conceptual analyses of help-seeking behaviour and access to healthcare, which informs understanding of the complexity of seeking help in this context. CONCLUSIONS: This study revealed differences between participants' help-seeking intentions and actions. Using the conceptual analyses of help-seeking behaviour and access to healthcare informs understanding of the complexity of the help-seeking process in this context. To safely use a home therapy, it is imperative that individuals recognize signs/symptoms of peritonitis, seek help promptly and are appropriately supported when they access healthcare. Further work is needed to examine how these individual and system changes can be enacted.

Methodological considerations when using ethnography to explore home care.

BACKGROUND: Ethnography has been widely and successfully used in nursing and healthcare research, in particular to explore culture in clinical settings. Ethnographic studies are less often used to explore the effects of home medical technologies, despite the ongoing drive for patients to assume responsibility for their own care and to receive care at home. AIM: To discuss methodological considerations when conducting ethnographic research in patients' homes, drawing on a study exploring the culture of patients and their families living with peritoneal dialysis in their homes. DISCUSSION: In-depth insights obtained by observing participants in their homes, recording field notes through text and diagrams, minimising intrusion, and promoting participants' privacy with adapted periods of observation are examined. The author's role in caring for ill participants in the home is also covered. CONCLUSION: Ethnography can generate holistic, rich data, but must be adapted when used in participants' homes. IMPLICATIONS FOR PRACTICE: Ethnography can help healthcare professionals and policymakers to understand the effects on patients and their families of living with home medical technologies.

Considerations and recommendations for conducting qualitative research interviews with palliative and end-of-life care patients in the home setting: a consensus paper.

OBJECTIVES: To present and discuss the views of researchers at an academic palliative care research centre on research encounters with terminally ill patients in the home setting and to generate a list of recommendations for qualitative researchers working in palliative and end-of-life care. METHODS: Eight researchers took part in a consensus meeting to discuss their experiences of undertaking qualitative interviews. The researchers were of varying backgrounds and all reported having experience in interviewing terminally ill patients, and all but one had experience of interviewing patients in their home environment. RESULTS: The main areas discussed by researchers included: whether participation in end-of-life research unintentionally becomes a therapeutic experience or an ethical concern; power relationships between terminally ill patients and researchers; researcher reflexivity and reciprocity; researchers' training needs. Qualitative methods can complement the home environment; however, it can raise ethical and practical challenges, which can be more acute in the case of research undertaken with palliative and patients at the end-of-life. CONCLUSIONS: The ethical and practical challenges researchers face in this context has the potential to place both participant and researcher at risk for their physical and psychological well-being. We present a set of recommendations for researchers to consider prior to embarking on qualitative research in this context and advocate researchers in this field carefully consider the issues presented on a study-by-study basis.

Palliative care research centre's move into social media: constructing a framework for ethical research, a consensus paper.

BACKGROUND: Social media (SM) have altered the way we live and, for many, the way we die. The information available on even the rarest conditions is vast. Free from restrictions of mobility, time and distance, SM provides a space for people to share experiences of illness, death and dying, and potentially benefit from the emotional and practical support of others n similar positions. The communications that take place in these spaces also create large amounts of 'data' which, for any research centre, cannot be ignored. However, for a palliative care research centre the use of this 'data' comes with specific ethical dilemmas. METHODS: This paper details the process that we, as a research, went through in constructing a set of ethical guidelines by which to work. This involved conducting two consensus days; one with researchers from within the centre, and one with the inclusion of external researchers with a specific interest in SM. RESULTS: The primary themes that emerged from the consensus meetings includes; SM as a public or private space; the status of open and closed groups; the use of historical data; recruiting participants and obtaining informed consent and problems of anonymity associated with dissemination. CONCLUSIONS: These are the themes that this paper will focus on prior to setting out the guidelines that we subsequently constructed.

Gaining an accurate reflection of the reality of palliative care through the use of free-text feedback in questionnaires: the AFTER study.

BACKGROUND: In healthcare, many service evaluation questionnaires use free-text boxes without formal mechanisms for analysis. Patients and carers spend time documenting concerns that are often ignored or managed locally in an ad hoc manner. Currently, palliative care experiences of patients and carers in Wales are measured using a service evaluation questionnaire, comprising both closed and open-ended questions. Previous research, exploring free-text responses from this questionnaire, suggests that questionnaire refinement should accommodate service users' expressed priorities and concerns, and highlights the need to incorporate free-text data analysis strategies during study design. METHODS: Results from a previous analysis of 596 free-text responses provided the basis for an expert consensus day, where the current service evaluation questionnaire was refined. The refined version was tested during cognitive interviews with patients (n=10) and carers (n=7) receiving palliative care from 1 of 2 UK hospices. Data were analysed thematically. RESULTS: Interviews highlighted minor areas for change within the questionnaire and provided broader insight into patients' experiences of palliative care services. Patients and carers place an emphasis on simplifying language, decreasing the numeric response range and reducing written instructions; relying instead on visual cues, including formatting and layout. Findings highlighted the importance patients attached to providing meaningful free-text contributions. CONCLUSIONS: Questionnaire refinement should use the patient perspective to effectively facilitate respondent understanding, pertinence and usability. The importance of employing data analysis strategies during questionnaire design may reduce research waste, thus enabling a better interrogation of service provision.

Symptom management, nutrition and hydration at end-of-life: a qualitative exploration of patients', carers' and health professionals' experiences and further research questions.

BACKGROUND: Symptom management is an essential aspect of palliative and end-of-life care, but evidence suggests that patients' symptoms may not always be relieved, causing significant harm to patients and magnifying their relatives' distress. A growing body of evidence focuses on symptom management at the end-of-life, but research funding for palliative care remains disproportionately low. It is therefore crucial that research funding is targeted at areas of importance to patients and relatives. The Palliative and end-of-life care Priority Setting Partnership (PeolcPSP) undertook a UK-wide free-text survey to establish research priorities within palliative and end-of-life care and disseminated its results in 2015. Much of the data were related more broadly to personal perceptions and experiences rather than specific research questions. The aim of this article is to report on a supplementary analysis exploring the experiences and questions of PeolcPSP survey respondents regarding symptoms, hydration and nutrition. METHODS: The PeolcPSP data (n = 1403) were coded by a team of qualitative researchers in a supplementary analysis. There were 190 responses that related to symptoms, nutrition and hydration. The data were analysed thematically using Braun and Clarke's approach. RESULTS: Five themes were identified: pain, breathlessness, agitation, nutrition and hydration. The majority of responses related to symptoms that were sub-optimally managed, in particular pain. Nutrition and hydration were of significant concern, particularly for carers. Overall, respondents consistently asked about the most effective, evidence-based methods for managing symptoms and suggested areas where further research is necessary. CONCLUSIONS: This study highlights the perceptions and experiences of patients, families and professionals within palliative care, highlighting the need for improved care, communication and further research to establish which treatments are most effective within a palliative care population. This is essential to reduce harm and distress for patients and families.

Knowledge, understanding and experiences of peritonitis amongst patients, and their families, undertaking peritoneal dialysis: A mixed methods study protocol.

AIM: This article is a report of a study protocol designed to examine patients' and families' knowledge and experiences of peritoneal dialysis-associated peritonitis. BACKGROUND: Peritonitis is a considerable problem for people using peritoneal dialysis, leading to antibiotics, hospitalization and decreased quality of life. For some patients, peritonitis requires changing renal replacement therapy and can be fatal. Peritonitis is distressing and some patients are unfamiliar with the signs and symptoms. Patients with better knowledge of peritonitis and adherence to peritoneal dialysis procedures have lower rates of peritonitis. Little is known about patients' and families' knowledge and experience of peritoneal dialysis-associated peritonitis in the United Kingdom. DESIGN: Ethical approval was gained in March 2017. To meet the study aim, a two-phase sequential explanatory mixed methods study is proposed. METHODS: Phase One: An author-developed questionnaire will be sent to patients using peritoneal dialysis at five sites in England and Wales. Patients will be asked to consider inviting a relative to participate. The questionnaire will assess peritonitis knowledge and experience. Data will be analysed statistically. Phase Two: Semi-structured interviews will be conducted with a purposive sample of Phase One participants (n = 30) to explore their experiences of peritonitis in further depth. The data will be analysed thematically using Wolcott's (1994) approach. DISCUSSION: Data from the two phases will be synthesized to identify patients' and families' peritonitis information needs, to ensure they are appropriately supported to prevent, monitor, identify and report peritonitis.

Finding the evidence for better patient care.

When I finished my nursing degree and started work as a staff nurse in nephrology, I did not expect to work in nursing research.

The preferences and perspectives of family caregivers towards place of care for their relatives at the end-of-life. A systematic review and thematic synthesis of the qualitative evidence.

BACKGROUND: Home is often reported as the preferred place of care for patients at the end-of-life. The support of family caregivers is crucial if this is to be realised. However, little is known about their preferences; a greater understanding would identify how best to support families at the end-of-life, ensuring more patients are cared for in their preferred location. OBJECTIVES: To systematically search and synthesise the qualitative literature exploring the preferences and perspectives of family caregivers towards place of care for their relatives at the end-of-life. METHODS: Ten databases (MEDLINE, PsycINFO, EMBASE, AMED, ASSIA, CINAHL, Social Care Online, Cochrane Database, Scopus, Web of Science) and reference lists of key journals were searched up to January 2014. Included studies were appraised for quality and data thematically synthesised. RESULTS: Eighteen studies were included; all were of moderate or high quality. Two main themes were identified: (1) Preferences and perspectives: most family caregivers preferred home care, although a range of perspectives were reported. Both positive and negative perspectives of home, hospices and hospitals emerged. At times, family caregivers reported feeling obligated to provide home care. (2) Impact of facilitating home care; both positive and negative effects on family caregivers were reported. CONCLUSIONS: Many family caregivers reported home as the preferred place of care; other places of care were infrequently considered. Healthcare professionals and service providers should be aware of these preferences and provide support where needed to enable family caregivers to successfully care at home, thus improving end-of-life experiences for families as a whole.

A feasibility study to inform the design of a randomised controlled trial to identify the most clinically effective and cost-effective length of Anticoagulation with Low-molecular-weight heparin In the treatment of Cancer-Associated Thrombosis (ALICAT).

BACKGROUND: Venous thromboembolism is common in cancer patients and requires anticoagulation with low-molecular-weight heparin (LMWH). Current data recommend LMWH for anticoagulation as far as 6 months, yet guidelines recommend LMWH beyond 6 months in patients who have ongoing or active cancer. This recommendation, based on expert consensus, has not been evaluated in a clinical study. OBJECTIVES: (1) To identify the most clinically and cost-effective length of anticoagulation with LMWH in the treatment of cancer-associated thrombosis (CAT); (2) to identify practicalities of conducting a full randomised controlled trial (RCT) with regard to recruitment, retention and outcome measurement; and (3) to explore the barriers for progressing to a full RCT. DESIGN: The Anticoagulation with Low-molecular-weight heparin In the treatment of Cancer-Associated Thrombosis (ALICAT) trial is a randomised, multicentre, feasibility mixed-methods study with three components: (1) a RCT comparing ongoing LMWH treatment for CAT with cessation of LMWH at 6 months' treatment (current licensed practice) in patients with locally advanced or metastatic cancer, consulted in three clinical settings (haematology outpatients, oncology outpatients and primary care); (2) a nested qualitative study, including focus groups with clinicians to investigate attitudes for recruiting to the study and identify the challenges of progressing to a full RCT, and semistructured interviews with patients and relatives to explore their attitudes towards participating in the study, and potential barriers and concerns to participation; and (3) a UK-wide survey exercise to develop a classification and enumeration system for the CAT models and pathways of care. SETTING: A haematology outpatients department, an oncology outpatients department and primary care. PARTICIPANTS: Patients with ongoing active or metastatic cancer who have received 6 months of LMWH for CAT. INTERVENTIONS: Ongoing LMWH treatment for CAT versus cessation of LMWH at 6 months' treatment in patients with locally advanced or metastatic cancer. MAIN OUTCOME MEASURES: (i) The number of eligible patients over 12 months; (ii) the number of recruited patients over 12 months (target recruitment rate of 30% of eligible patients); and (iii) the proportion of randomised participants with recurrent venous thromboembolisms (VTEs) during follow-up. RESULTS: Following several delays in setting up the RCT component of the study, 5 out of 32 eligible patients consented to be randomised to the RCT suggesting progression to a full RCT was not feasible. Reasons for non-consenting were primarily based on a fixed preference for continuing or discontinuing treatment after 6 months of anticoagulation, and a fear of randomisation to their non-preferred option. Views were largely influenced by patients' initial experience of CAT. Focus groups with clinicians revealed that they would be reticent to recruit to such a study as they had fixed views of best management despite the lack of evidence. Patient pathway modelling suggested that there is a broad heterogeneity of practice with respect to CAT management and co-ordination, with no consensus on which specialty should best manage such cases. CONCLUSIONS: The results of the RCT reflect recruitment from the oncology site only and provide no recruitment data from haematology centres. However, it is unlikely that these other sites would have access to more eligible patients. The management of cancer-associated thrombosis beyond 6 months will remain a clinical challenge. As it is unlikely that a prospective study will successfully recruit, other strategies to accrue relevant data are necessary. Currently the LONGHEVA (Long-term treatment for cancer patients with deep-venous thrombosis or pulmonary embolism) registry is in development to prospectively evaluate this important and common clinical scenario. STUDY REGISTRATION: This study is registered as clinical trials.gov number NCT01817257 and International Standard Randomised Controlled Trial Number (ISRCTN) 37913976. FUNDING DETAILS: Funding for the ALICAT trial was provided by the Health Technology Assessment programme (10/145/01) in response to a themed funding call. The study was designed in accordance with the initial funding brief and feedback from the review process.

PATIENTS' AND RELATIVES' EXPERIENCES OF PERITONITIS WHEN USING PERITONEAL DIALYSIS.

BACKGROUND: Internationally, increasing numbers of patients are requiring treatment for end-stage kidney disease and greater use of peritoneal dialysis is thus being promoted. However, peritonitis can be a significant problem in this population. It is the leading cause of technique failure in patients using peritoneal dialysis and results in considerable morbidity and mortality. There is a dearth of research exploring patients' and their families' experiences of peritonitis. OBJECTIVES: The aim of this paper is to explore patients' and their families' perspectives and experiences of peritonitis. DESIGN: An ethnographic study was conducted in 2011 in the United Kingdom. PARTICIPANTS: Sixteen patients and nine of their relatives were recruited through purposive and convenience sampling. APPROACH: In-depth interviews were undertaken with patients and their families, who were also observed using peritoneal dialysis in their homes. The data were analysed thematically using Wolcott's (1994) three-stage approach. RESULTS: This article describes four themes: learning about the risk of peritonitis; measures taken to prevent the infection; how participants monitored continuously for signs and symptoms of the infection; how they then identified and intervened once peritonitis was suspected. Overall, peritonitis was associated with fear and uncertainty, pain and learning from episodes of the infection. CONCLUSIONS: Overall, peritonitis was a distressing experience that participants sought to prevent. However, there was some confusion amongst participants about the signs and symptoms of the infection and further education for patients and their families is thus crucial.

Patient and family perspectives on peritoneal dialysis at home: findings from an ethnographic study.

AIMS AND OBJECTIVES: To discuss findings from an ethnographic study, considering the experiences of patients and families, using peritoneal dialysis at home in the United Kingdom. BACKGROUND: Peritoneal dialysis is a daily, life-preserving treatment for end-stage renal disease, undertaken in the patient's home. With ever-growing numbers of patients requiring treatment for this condition, the increased use of peritoneal dialysis is being promoted. While it is known that quality of life is reduced when using dialysis, few studies have sought to explore experiences of peritoneal dialysis specifically. No previous studies were identified that adopted an ethnographic approach. DESIGN: A qualitative design was employed, utilising ethnographic methodology. METHODS: Ethical and governance approvals were gained in November 2010 and data were generated in 2011. Patients (n = 16) and their relatives (n = 9) were interviewed and observed using peritoneal dialysis in their homes. Thematic analysis was undertaken using Wolcott's (1994) three stage process: Description, Analysis and Interpretation. RESULTS: This article describes four themes: initiating peritoneal dialysis; the constraints of peritoneal dialysis due to medicalisation of the home environment and the imposition of rigid timetables; the uncertainty of managing crises and inevitable deterioration; and seeking freedom through creativity and hope of a kidney transplant. CONCLUSIONS: This study highlights the culture of patients and their families living with peritoneal dialysis. Despite the challenges posed by the treatment, participants were grateful they were able to self-manage at home. Furthermore, ethnographic methods offer an appropriate and meaningful way of considering how patients live with home technologies. RELEVANCE TO CLINICAL PRACTICE: Participants reported confusion about kidney transplantation and also how to identify peritonitis, and ongoing education from nurses and other healthcare professionals is thus vital. Opportunities for sharing experiences of peritoneal dialysis were valued by participants and further peer-support services should thus be considered.

The role of the public in developing interventions: a reflection and critique of a cancer clinical trials unit's model.

The importance of involving lay representatives in research is well-recognized but is not consistently meaningfully practiced or reported. Although the positive outcomes of lay representative involvement can include more relevant research questions and outcomes, challenges are also apparent, including tokenistic involvement by research teams. A Cancer Research UK-funded and National Cancer Research Institute-registered cancer clinical trials unit in the United Kingdom established a program of work to promote genuine and consistent involvement of lay representatives (or "research partners") as part of the research team. Furthermore, a volunteer was employed to recruit and coordinate the research partners in partnership with a national agency for public involvement in health and social care research in Wales. This article reports on the development of this project and how it will be formally evaluated. Recommendations for involving lay representatives are also posed.

A feasibility study to inform the design of a randomized controlled trial to identify the most clinically and cost effective anticoagulation length with low molecular weight heparin in the treatment of cancer associated thrombosis (ALICAT): study protocol for a mixed-methods study.

BACKGROUND: Venous thromboembolism is common in patients with cancer and requires anticoagulation with low molecular weight heparin. Current data informs anticoagulation as far as six months, yet guidelines recommend anticoagulation beyond six months in patients who have locally advanced or metastatic cancer. This recommendation, based on expert consensus, has not been evaluated in a clinical study. ALICAT (Anticoagulation Length in Cancer Associated Thrombosis) is a feasibility study to identify the most clinically and cost effective length of anticoagulation with low molecular weight heparin in the treatment of cancer associated thrombosis. METHODS/DESIGN: ALICAT is a randomized multi-centre phase two mixed-methods study with three components: a randomized controlled trial, embedded qualitative study and a survey investigating pathways of care. The randomized controlled trial will compare ongoing low molecular weight heparin treatment for cancer-associated thrombosis versus cessation of low molecular weight heparin at six months treatment (current licensed practice) in patients with locally advanced or metastatic cancer. The embedded qualitative study will include focus groups with clinicians to investigate attitudes to recruiting to the study, identify the challenges of progressing to a full randomized controlled trial, and also semi-structured interviews with patients and relatives/carers to explore their attitudes towards participating in the study and potential barriers and concerns to participation. Finally, a UK wide survey exercise will be undertaken to develop a classification and enumeration system for the cancer associated thrombosis models and pathways of care. DISCUSSION: There is a lack of evidence determining the length of anticoagulation for patients with cancer associated thrombosis and subsequently treatment length varies. The ALICAT study will consider the feasibility of recruiting patients to a phase three trial. TRIAL REGISTRATION: Current Controlled Trials ISRCTN37913976.