"When selling anything to an audience, visible publicity is key:" experiences, barriers, and enablers to participate in a COVID-19 study in Malawi.

BACKGROUND: Many studies in infectious diseases struggle to recruit participants. The SARS-CoV-2 infection, transmission dynamics, and household impact in Malawi (SCATHIM) study reported a refusal rate of 57.2%. Adequate publicity can lead to more people participating in studies. This study explored the reasons for participating in the SCATHIM study. METHODS: A descriptive qualitative study informed by the theory of reasoned action was conducted in Blantyre between January 2022 and March 2022 to assess factors that influence participation in a COVID-19 study among 10 index cases, 10 caregivers, 10 study decliners, and 5 research staff. The data were collected via in-depth interview guides, audio recorded, transcribed, managed via NVIVO and analysed via a thematic approach. RESULTS: The factors that motivated participation in the study included one's knowledge of COVID-19; potential access to medical services, including free COVID-19 tests for members of the household; financial reimbursements; and the ability to contribute scientific knowledge. The barriers to participation included minimal publicity of the study amidst a novel condition, perceived stigma and discrimination, perceived invasion of privacy, discomfort with the testing procedures, and suboptimal financial reimbursements. CONCLUSION: Effective publicity and outreach strategies have the potential to decrease refusal rates in study participation, especially if a condition is novel. Studies on infectious diseases should address stigma and discrimination to promote participation and ensure participant safety.

Personality Traits and eHealth Study Enrollment Among Racial and Sexual Minoritized Men Living with HIV.

Inequities in eHealth research enrollment persist among Black and Latinx sexual minoritized men (SMM) partly due to socio-ecological barriers. Less is known about how personality traits are associated with their study enrollment. We examined the role of personality traits among 1,285 U.S. Black and Latinx SMM living with HIV recruited from sexual networking websites/apps for an eHealth intervention. Lower neuroticism and higher openness were associated with greater odds of study enrollment among Latinx SMM. Given these exploratory findings, future research should examine this phenomenon, along with well-established socio-ecological factors such as medical mistrust to better understand eHealth study enrollment gaps among Black and Latinx SMM.

COVID-19 pandemic's relationship with enrollment at US Alzheimer's Disease Research Centers.

INTRODUCTION: We aimed to characterize the COVID-19 pandemic's relationship with enrollment in US Alzheimer's Disease Research Centers (ADRCs). METHODS: Using data on 10,105 participants from 30 ADRCs, we conducted interrupted time series analyses to assess the relationship of the pandemic with enrollment and calculate projected dates of enrollment recovery. RESULTS: Participants enrolled during the pandemic (vs pre-pandemic) were more likely to have dementia and be referred by health professionals. The pandemic was associated with a 77% drop in enrollment, with projected trend recovery in March 2024 and 100% recovery in September 2024. COVID was associated with a 91% drop in Black/African American participants, compared to 71% in White participants. Enrollment of both Hispanic and female participants was declining 1.4% and 0.3%/month pre-pandemic. DISCUSSION: Funders and researchers should account for ongoing COVID-19 impact on ADRD research enrollment. Strategies to speed enrollment recovery are needed, especially for Black/African American and Hispanic groups. HIGHLIGHTS: Tested COVID pandemic association with enrollment at Alzheimer's Disease Research Centers. During versus pre-pandemic enrollees differed on demographic and clinical variables. Interrupted time series analyses: immediate 77% drop in enrollment related to COVID. Recovery projections: trend recovery in March 2024, 100% recovery in September 2024. Enrollment of African American and Hispanic participants should be prioritized.

Intentional and actional components of engaged participation in public health research studies: qualitative synthesis of a recruitment and retention process into the theory-informed INTACT-RS framework.

BACKGROUND: Ensuring motivated and successful study participation is a key challenge in the design and conduct of health research studies. Previously, recruitment barriers and facilitators have been identified mainly from experience, and rarely based on theoretical approaches. We developed a framework of intentional and actional components of engaged participation in public health research studies (INTACT-RS), informed by psychological behavioral models. We aimed a) to identify precise indicators for each framework component and b) to better understand which components and decision processes are essential for study participants. METHODS: Within a multicenter research network, we applied various approaches to recruit parents of newborns, pediatricians, and midwives. All recruitment processes were documented from the perspective of both participants and researchers. We used different qualitative and quantitative data material, which we applied in a multistage process according to the basic principles of qualitative content analysis. RESULTS: INTACT-RS encompasses pre-intentional, intentional and actional phases with a total of n = 15 components covering all aspects of an individual's involvement with a research study. During intention formation, an understanding of efforts and benefits, why participation is valuable beyond contributing to research, and how others perceive the study, were particularly important to (potential) participants. Subsequently (intentional phase), participants consider how and when participation is compatible with their own resources, ability and availability, and hence seek for close communication with, and flexibility and support from the research team. During and after (initial) participation (actional phase), participants' assessment of whether expectations and interests have been met impact crucial further steps, especially the willingness to continue and to recommend participation to others. A strong topic-wise and or supportive participation interest as well as active, continuous exchange with the researchers appeared to be central determinants of study completion and data validity. CONCLUSIONS: A theoretical framework is now available to plan and conduct recruitment of different target groups, which accounts for essential motivational and volitional decision-making processes. Based on empirically specified constructs, possible barriers can be addressed even before the initial recruitment process. Therefore, recommendations for scientific practice have been formulated.

Recruitment and retention into longitudinal health research from an adolescent perspective: a qualitative study.

BACKGROUND: High quality longitudinal studies investigating changes in health behaviours over the transition into early adulthood are critical. However, recruiting and retaining adolescents is challenging. This study explored adolescents' perspectives of signing up to and continuing involvement in a hypothetical longitudinal health research study. METHODS: Forty-eight individuals (15-20y) participated in nine in-person focus groups about recruitment and retention in research. Participants were (a) school students in the last year of compulsory school (Year 11, 15-16y), (b) school/college students in Sixth Form (Year 13, 17-18y), (c) Further Education students studying after secondary education, but not higher education (16-18y) and (d) young adults not in education, employment, or training (18-20y) across England. Thematic analysis resulted in seven themes. RESULTS: Driving factors for sign-up included social connection e.g., joining with peer groups, personalised feedback, and incentives, primarily financial. Key barriers were lack of interest, the perception of commitment, and timing of recruitment. Young people preferred recruitment processes via social media with messages tailored to their motivations, monthly data collection of maximally 20-30 min, and hybrid data collection with some in-person contact with a consistent, non-judgemental researcher. The provision of autonomy, choice, and financial incentives were perceived to promote retention. CONCLUSIONS: Adolescent recruitment and retention strategies need to align with contemporary interests and motivations. Studies should involve adolescents early to develop a planned, systematic approach to participant sign-up and follow-up. Effective and ineffective recruitment and retention strategies should be reported as part of study findings. Future research should trial how perceived barriers to study engagement can be overcome.

Effects on long-term survival of psychosocial group intervention in early-stage breast cancer: follow-up of a randomized controlled trial.

BACKGROUND: The promise of prolonged survival after psychosocial interventions has long been studied, but not convincingly demonstrated. This study aims to investigate whether a psychosocial group intervention improved long-term survival in women with early-stage breast cancer and investigate differences in baseline characteristics and survival between study participants and non-participants. METHODS: A total of 201 patients were randomized to two six-hour psychoeducation sessions and eight weekly sessions of group psychotherapy or care as usual. Additionally, 151 eligible patients declined to participate. Eligible patients were diagnosed and treated at Herlev Hospital, Denmark, and followed for vital status up to 18 years after their primary surgical treatment. Cox's proportional hazard regressions were used to estimate hazard ratios (HRs) for survival. RESULTS: The intervention did not significantly improve survival in the intervention group compared with the control group (HR, 0.68; 95% confidence interval (CI), 0.41-1.14). Participants and non-participants differed significantly in age, cancer stage, adjuvant chemotherapy, and crude survival. When adjusted, no significant survival difference between participants and non-participants remained (HR, 0.77; 95% CI, 0.53-1.11). CONCLUSIONS: We could not show improved long-term survival after the psychosocial intervention. Participants survived longer than nonparticipants, but clinical and demographic characteristics, rather than study participation, seem accountable for this difference.

"It's a cause I believe in": factors motivating participation and engagement in longitudinal, respiratory-focused research studies.

BACKGROUND: Key to the success of any prospective cohort study is the effective recruitment and retention of participants, but the specific factors that influence younger adults of the Millennial generation to participate in research are not well-understood. The objective of this qualitative study was to identify factors that motivated participation and engagement in longitudinal research studies focused on respiratory health among a diverse group of young adults. METHODS: We conducted qualitative, semi-structured interviews with 50 younger adult participants (aged 25-35 years) regarding factors influencing their participation in longitudinal research studies. Thematic analysis was used to develop, organize, and tabulate the frequency of key themes. In exploratory analyses, we examined for patterns in the distribution of key themes across racial, ethnic, or socioeconomic groups. RESULTS: Participants identified several key themes that affected their willingness to participate in longitudinal studies. These included the health-related benefits generated by research (both to the individual and to society at-large), factors related to the institution and study team conducting the research, concerns regarding unethical and/or unrepresentative study design, and barriers to participation in research. Certain factors may be more impactful to underrepresented groups, including concerns regarding data privacy and confidentiality. CONCLUSIONS: In this diverse group of younger adults, we identified specific factors that motivated participation and predicted high engagement in longitudinal research studies focused on respiratory health. Implementing and integrating these factors into study protocols may improve recruitment and retention, including among participants who are historically underrepresented in research.

Identifying and handling unbalanced baseline characteristics in a non-randomized, controlled, multicenter social care nurse intervention study for patients in advanced stages of cancer.

PURPOSE: Given the psychosocial burdens patients in advanced stages of cancer face, innovative care concepts are needed. At the same time, such vulnerable patient groups are difficult to reach for participation in intervention studies and randomized patient inclusion may not be feasible. This article aims to identify systematic biases respectively selection effects occurring during the recruitment phase and to discuss their potential causes based on a non-randomized, multicenter intervention study with patients in advanced stages of cancer. METHODS: Patients diagnosed with at least one of 16 predefined cancers were recruited at four hospitals in three German cities. The effect of social care nurses' continuous involvement in acute oncology wards was measured by health-related quality of life (EORTC QLQ-C30), information and participation preferences, decisional conflicts, doctor-patient communication, health literacy and symptom perception. Absolute standardized mean difference was calculated as a standardized effect size to test baseline characteristics balance between the intervention and control groups. RESULTS: The study enrolled 362 patients, 150 in the intervention and 212 in the control group. Except for gender, both groups differed in relevant socio-demographic characteristics, e.g. regarding age and educational background. With respect to the distribution of diagnoses, the intervention group showed a higher symptom burden than the control group. Moreover, the control group reported better quality of life at baseline compared to the intervention group (52.6 points (SD 21.7); 47.8 points (SD 22.0), ASMD = 0.218, p = 0.044). CONCLUSION: Overall, the intervention group showed more social and health vulnerability than the control group. Among other factors, the wide range of diagnoses included and structural variation between the recruiting clinics increased the risk for bias. We recommend a close, continuous monitoring of relevant social and health-related characteristics during the recruitment phase as well as the use of appropriate statistical analysis strategies for adjustment, such as propensity score methods. TRIAL REGISTRATION: German Clinical Trials Register (DRKS-ID: DRKS00013640 ); registered on 29th December 2017.

Improving diversity in study participation: Patient perspectives on barriers, racial differences and the role of communities.

INTRODUCTION: The lack of racial/ethnic diversity in research potentially limits the generalizability of findings to a broader population, highlighting the need for greater diversity and inclusion in clinical research. Qualitative research (i.e., focus groups) was conducted to identify (i) the potential motivators and barriers to study participation across different races and ethnicities; (ii) preferred delivery of education and information to support healthcare decision-making and the role of the community. METHODS: Patient focus groups were conducted with 26 participants from the sponsor's Patient Engagement Research Councils selected through subjective sampling. Recruitment prioritized adequate representation across different race/ethnic groups. Participation was voluntary and participants underwent a confidential interview process before selection. Narrative analysis was used to identify themes and draw insights from interactions. Experienced research specialists identified emerging concepts, and these were tested against new observations. The frequency of each concept was examined to understand its importance. RESULTS: Based on self-selected race/ethnicity, participants were divided into five focus groups (Groups: African American/Black: 2; Hispanic/Latino, Asian American, and white: 1 each) and were asked to share their experiences/opinions regarding the stated objectives. Barriers to study participation included: limited awareness of opportunities to participate in research, fears about changes in standard therapy, breaking cultural norms/stigma, religion-related concerns and mistrust of clinical research. Participants identified the importance of transparency by pharmaceutical companies and other entities to build trust and partnership and cited key roles that communities can play. The perceptions of the African American group regarding diversity/inclusion in research studies appeared to be different from other groups; a lack of trust in healthcare providers, concerns about historical instances of research abuse and the importance of prayer were cited. CONCLUSION: This study provided insights into barriers to study participation, and also highlighted the need for pharmaceutical companies and other entities to authentically engage in strategies that build trust within communities to enhance recruitment among diverse populations. PATIENT OR PUBLIC CONTRIBUTION: The data collected in the present study was provided by the participants in the focus groups.

Perceived acceptability and feasibility of HIV self-testing and app-based data collection for HIV prevention research with transgender women in the United States.

In the United States, transgender women are disproportionately burdened by HIV infection. Research aimed at curbing the HIV epidemic for this population may benefit from innovative technology to engage participants in research. Adult transgender women (n = 41) from six cities in the southern and eastern United States participated in seven online focus groups between August 2017 and January 2018. Analyses focused on perceived acceptability of novel technologies for research purposes, particularly HIV self-testing (HIVST) and remote data collection through a mobile app. While participants noted a number of benefits to HIVST and remote study participation, including increased participant engagement and sentiments of agency, they also expressed concerns that may impact HIVST and remote participation including housing instability, inconsistent access to technology, and confidentiality. Study findings provide insight into gaps that must be addressed when using technology-enhanced methods to support HIV testing and research participation among transgender women in the US. Substantial effort is required on the part of investigators to ensure equitable access across subgroups and, thus, minimize bias to avoid reproducing health disparities in research.

Enrollment and biospecimen collection in a multiethnic family cohort: the Northern California site of the Breast Cancer Family Registry.

PURPOSE: Racial/ethnic minorities are often assumed to be less willing to participate in and provide biospecimens for biomedical research. We examined racial/ethnic differences in enrollment of women with breast cancer (probands) and their first-degree relatives in the Northern California site of the Breast Cancer Family Registry from 1996 to 2011. METHODS: We evaluated participation in several study components, including biospecimen collection, for probands and relatives by race/ethnicity, cancer history, and other factors. RESULTS: Of 4,780 eligible probands, 76% enrolled in the family registry by completing the family history and risk factor questionnaires and 68% also provided a blood or mouthwash sample. Enrollment was highest (81%) for non-Hispanic whites (NHWs) and intermediate (73-76%) for Hispanics, African Americans, and all Asian American subgroups, except Filipina women (66%). Of 4,279 eligible relatives, 77% enrolled in the family registry, and 65% also provided a biospecimen sample. Enrollment was highest for NHWs (87%) and lowest for Chinese (68%) and Filipinas (67%). Among those enrolled, biospecimen collection rates were similar for NHW, Hispanic, and African American women, both for probands (92-95%) and relatives (82-87%), but lower for some Asian-American subgroups (probands: 72-88%; relatives: 71-88%), foreign-born Asian Americans, and probands those who were more recent immigrants or had low English language proficiency. CONCLUSIONS: These results show that racial/ethnic minority populations are willing to provide biospecimen samples for research, although some Asian American subgroups in particular may need more directed recruitment methods. To address long-standing and well-documented cancer health disparities, minority populations need equal opportunities to contribute to biomedical research.

[AdvanceGender-Joint project for sex/gender-sensitive and intersectional research and health reporting]. / AdvanceGender ­ Verbundprojekt für eine geschlechtersensible und intersektionale Forschung und Gesundheitsberichterstattung.

Health reporting provides information on the health of the population and thus forms the basis for adequate health promotion, prevention, and care. In order to better represent social diversity, the joint project AdvanceGender (funded by the German Federal Ministry for Education and Research) aims to promote the development of a gender-sensitive and intersectional approach to population-based studies and health reporting. The three subprojects research study participation, data analysis, and health reporting. Based on the results, recommendations for epidemiological studies and for health reporting will be developed.

Predicting participation of people with impaired vision in epidemiological studies.

BACKGROUND: The characteristics of the target group and the design of an epidemiologic study, in particular the recruiting methods, can influence participation. People with vision impairment have unique characteristics because those invited are often elderly and totally or partially dependent on help to complete daily activities such as travelling to study sites. Therefore, participation of people with impaired vision in studies is less predictable than predicting participation for the general population. METHODS: Participants were recruited in the context of a study of prevalence and costs of visual impairment in Portugal (PCVIP-study). Participants were recruited from 4 Portuguese public hospitals. Inclusion criteria were: acuity in the better eye from 0.5 decimal (0.30logMAR) or worse and/or visual field of less than 20 degrees. Recruitment involved sending invitation letters and follow-up phone calls. A multiple logistic regression model was used to assess determinants of participation. The J48 classifier, chi-square and Fisher's exact tests were applied to investigate the possible differences between subjects in our sample. RESULTS: Individual cases were divided into 3 groups: immediate, late and non-participants. A participation rate of 20% was obtained (15% immediate, 5% late). Factors positively associated with participation included years of education, annual hospital attendance, and intermediate visual acuity. Females and greater distance to the hospital were inversely associated with participation. CONCLUSION: In our study, a letter followed by a phone call was efficient to recruit a significant number of participants from a larger group of people with impaired vision. However, the improvement in participation observed after the phone call might not be cost-effective. People with low levels of education and women were more difficult to recruit. These findings need to be considered to avoid studies whose results are biased by gender or socio-economic inequalities of their participants. Young subjects and those at intermediate stages of vision impairment, or equivalent conditions, may need more persuasion than other profiles.

Interference Between Family Caregivers' Mental Disorders and Their Estimates of Quality of Dying and Death (QODD) of Their Loved Ones.

BACKGROUND: In studies enrolling informal caregivers of patients in palliative care, it is necessary to ensure that findings are not influenced by factors such as mental disorders. AIM: This study aims to describe the influence of anxiety and depression on bereaved informal caregivers' retrospective ratings of the quality of dying and death (QoDD) of their loved ones. DESIGN: Informal caregivers of deceased patients from 2 German palliative care (PC) units took part in a validation study of the German version of the original QoDD-Deutsch-Angehörige (QoDD-D-Ang) during the fourth week following the patient's death at the earliest. Depressive and panic disorders were assessed via the Patient Health Questionnaire (PHQ). Group comparisons (χ2, t test; significance level P < .05) analyzed whether informal caregivers with depression or panic disorders and those without such disorders differ in their estimates. RESULTS: A total of 226 informal caregivers participated between August 2012 and December 2013. The mean age of participants was 55.5 years; 61.1% were female. The PHQ of 221 participants resulted in 8.6% with major disorders, 13.6% with other depressive syndromes, and 77.8% without depressive disorders. In this secondary data analysis here, there was no difference between female and male participants concerning the incidence of depression ( P = .519, χ2). Two participants screened positive for both panic and major depressive disorders. Both groups presented no significant differences in the mean total QoDD-D-Ang scores ( P = .343). CONCLUSION: Informal caregivers' estimates on the QoDD-D-Ang of their significant others do not interfere with mental disorders. Therefore, bereaved informal caregivers are able to participate in the PC research after a few weeks following the loss of a loved one.

Perceptions, experiences, and motivation of COVID-19 vaccine trial participants in South Africa: a qualitative study.

BACKGROUND: The informed consent process is an important step in conducting ethical clinical trials, as it ensures that research participants are aware of their rights and responsibilities in clinical trials. This study explored participants' perceptions, experiences and the factors motivating their participation in a COVID-19 vaccine trial in South Africa. METHODS: This descriptive qualitative study was conducted among twenty-five adult participants (18 to 64 years old) who participated in a COVID-19 vaccine trial in South Africa. Three focus group discussions and fifteen semi-structured interviews were carried out. Data were collected at a Clinical Research Site located in Prince Mshiyeni Memorial Hospital, in Umlazi Township, Durban, South Africa, where the COVID-19 vaccine trial participants were initially enrolled. Data were analysed iteratively using a thematic analysis approach. RESULTS: Four key findings emerged: 1) Participants who experienced an event (such as tested positive for COVID-19) during the clinical trial were more likely to talk about the informed consent more thoroughly compared to the other participants. 2) Participants understood the purpose of informed consent process better when it was repeated multiple times throughout the course of the trial. 3) Where participants did not recall or understand various elements of the informed consent, participants were likely to create their own interpretations. 4) Factors influencing participations in trials were reimbursement for participation, access to health care, protection of family members, and ability to socialize without fear of COVID-19. CONCLUSION: Overall, the findings show that the informed consent process should be regarded as an ongoing process rather than a once-off event that only happens at the start of a clinical trial. An understanding of participants' perspectives, experiences, and motivations for participating in clinical trials, can help trial staff strengthen the consent documents and processes.

How the expert nursing role was used to facilitate the co-design of a patient interview study.

BACKGROUND: Co-design is a research method that seeks to engage service users in research. The approach fosters inclusivity and shared power by having researchers and research participants work together for some or all of a study. AIM: To describe the experience of co-designing a patient interview study from the perspective of an expert stoma nurse, using a case-study approach and reflexive methods. DISCUSSION: Valuing expert patients' experiences when conducting research about them enabled patients to be trained as participant researchers to co-design and undertake a patient interview study. The co-design process enabled the researcher to develop a greater recognition of the fact that experience of looking after people with stomas does not equate to expertise in knowing what it is like to have a stoma. This enriched her research experience and increased the authenticity of the study. CONCLUSION: Co-designing a study with service users creates challenges for nurse researchers. They must pay attention to relational changes, time, planning and organisation to ensure that they conduct their research rigorously and ethically, and safeguard the co-researchers and other participants from potential risks. IMPLICATIONS FOR PRACTICE: Co-designing research is critical for developing effective, patient-centred bodies of evidence. Nurse researchers can play a critical role but must be prepared to shift from directive to participatory methods to identify appropriate, patient-focused improvements.

Exploring research participation in Scottish care homes since the COVID-19 pandemic.

Knowledge about research participation in care homes is sparse. To explore research participation in Scottish care homes, including the potential barriers and facilitators, a short survey was distributed to all care homes in Scotland in 2014. The survey was repeated in 2022 as care homes emerged from the effects of the coronavirus disease 2019 (COVID-19) pandemic. This article provides a comparison of the results of the 2022 survey (45 responses) with those of the 2014 survey (130 responses); the surveys were completed by care home staff. The results indicate that there has been a slight increase in the proportion of care homes involved in research in the intervening period but overall, research participation has remained low in this sector. In the 2022 survey, the main factors identified as influencing a resident's decision to participate in research were 'to help others', 'to benefit the resident' and the 'resident's desire to participate'. The main obstacles to research participation by staff and/or residents were workload pressure and lack of time, which had increased significantly since the 2014 survey. The results reinforce the importance of ensuring care home staff feel equipped to participate in research.

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.

The methodological challenges faced when conducting hydration research in UK care homes.

BACKGROUND: The evidence base for hydration practice in care homes is underdeveloped. High-quality research is therefore needed to determine what practices support older people with dementia in drinking sufficient fluid. However, methodological developments are needed to be able to do this. AIM: To highlight the methodological issues researchers encountered during a feasibility cluster, randomised controlled trial of ThinkDrink, a hydration care guide for people with dementia living in UK care homes. DISCUSSION: This is a challenging area because of the complexity of recruitment, participation and data collection in care homes. Researchers must pay extra attention to rigour and quality in the design of their studies. There may be multiple challenges, so various strategies may be required. CONCLUSION: It is important that researchers continue to reflect on rigorous approaches to develop evidence in a crucial area of care, despite these challenges. IMPLICATIONS FOR PRACTICE: Researchers working in complex environments face a variety of challenges to complete methodologically rigorous research. It is important for researchers to be critical of research processes and data, to mitigate and overcome these challenges.

Involving patients and the public in nursing PhD projects: practical guidance, potential benefits and points to consider.

BACKGROUND: Funders, academic publishers and governance bodies increasingly require research to involve patients and the public. This also enables nurse researchers to increase the visibility of scholarly nursing roles, which are poorly understood by the public. There are different approaches to involvement, and a wealth of guidance about how it can and should be implemented. Less is known about how it should be done in the context of a nursing PhD. AIM: To discuss the experiences of the authors' nursing research group in involving patients and the public in PhD research, reflect on the benefits to be gained from doing so, and highlight considerations for those planning to involve patients and the public in their doctoral research projects. Discussion It is essential to decide in advance of a study who you will involve, how to reach them and why you are involving patients and the public. Some potential benefits of involvement are: more accessible documentation, refined methods and better research outputs created in collaboration with patients and the public. CONCLUSION: Patients and the public should be involved in nursing PhD projects. Not only does this improve the quality of the research and raise the profile of nursing research, but it provides the opportunity for students to learn skills that they can develop further throughout their academic careers. IMPLICATIONS FOR PRACTICE: Obtaining high-quality patient and public involvement is an important skill for nurse researchers. The first steps in acquiring this skill should be taken during research training.