Experiences Of Research Participants Research Articles

Weighing Distress and Benefit: Understanding the Research Participation Experiences of Bereaved Parents of Children With Complex Chronic Conditions

ContextImproving end-of-life care for children with complex chronic conditions (CCCs) requires parental perspectives. The vulnerability of bereaved parents has historically been a research barrier and studies describing their research participation experience are lacking. ObjectivesTo examine the research participation experience of bereaved parents of children with CCCs and to identify factors associated with distress or benefit. MethodsIn this cross-sectional study, parents of deceased children who received care at Boston Children's Hospital between 2006 and 2015 completed survey questions describing their research participation experience after completing the Survey About Caring for Children with CCCs. Multivariable logistic regression was used to identify factors associated with perceived distress or benefit with participation. Free responses were analyzed using qualitative techniques. ResultsOne hundred fourteen (54%) of 211 eligible parents completed the survey a median of 3.9 years (interquartile range, 2.1–6.5) after their child's death. Most parents felt comfortable (78%) and reported benefit (88%) from survey participation. Only 6% of parents reported “a great deal” of distress with participation, and of those, 67% still found it beneficial. Being at least moderately spiritual was associated with benefit (adjusted odds ratio 7.12 [95% CI: 1.58–32.1]), while parental decisional regret was associated with distress (adjusted odds ratio 3.41 [95% CI: 1.33–8.72]). Benefit was the most common domain identified, with parents expressing appreciation for the opportunity to help others and share their story. ConclusionA majority of parents responded to questions about their child's end-of-life care without significant distress. When present, distress was often accompanied by a perception that participation was beneficial.

POTENSI GANGGUAN KETENTERAMAN DAN KETERTIBAN UMUM DI PEMILIHAN KEPALA DESA DAN PEMILIHAN KEPALA DAERAH (PERNAK PERNIK PEMILIHAN LANGSUNG)

Village head elections (pilkades) are political activities / events that show how the process (party) of democracy is at the village level. Pilkades is not merely a transfer of leadership for the sustainability of government and development in the village, or how a power struggle with a campaign strategy is carried out in order to get sympathy and support from the village community, but more than that it concerns prestige / dignity and honor so that it often creates tough competition and conflict. Since the enactment of Law no. 23 of 2004 and now Law no. 32 of 2014 concerning Regional Government, regional heads are directly elected by the people.
 This study aims to explain the possible potential for disturbances of peace and public order that can occur during the pre-post-regional head elections such as village head elections which result in disturbances of peace and public order, then try to analyze and study and anticipate as an effort to minimize possible disturbances.
 The method used in this research is descriptive research method by emphasizing the researcher's efforts to describe the phenomenon based on the experiences of research participants while on duty in the region and supplemented with the results of observations.
 The final results of this study are expected to be able to provide recommendations and solutions to a more appropriate “pilkada” model. The conclusion of this research is in order to enforce peace and public order in the regions by preventing disturbances of peace and order from pre to post Pilkada.

Older Persons' and Their Caregivers' Perspectives and Experiences of Research Participation With Impaired Decision-Making Capacity: A Scoping Review.

Human research ethics statements support the equitable inclusion of diverse groups. Yet older people are underrepresented in clinical research, especially those with impaired decision-making capacity. The aim of this study was to identify the perspectives and experiences of older persons and their caregivers of research participation with impaired decision-making capacity. Scoping review of the literature and online sources in January-February 2019 (updated June 2020) according to Joanna Briggs Institute methodology and PRISMA Extension for Scoping Reviews. English-language peer-reviewed research articles and Australian online narratives were included. Data were tabulated and narratively synthesized. From 4,171 database records and 93 online resources, 22 articles (2000-2019, 82% United States, 16 first authors) and one YouTube webinar (2018) were initially included; updated searches yielded an additional article (2020) and YouTube webinar (2020). Studies were heterogeneous in terminology, methods, and foci, with hypothetical scenarios, quantitative analyses, and examination of proxy consent predominating. Participants (N = 7,331) were older persons (71%), caregivers of older persons with dementia/cognitive impairment (23%), and older persons with dementia/cognitive impairment (6%). Synthesis identified 2 themes: willingness to participate and decision-making approaches. Research participation by older persons with dementia may be optimized through reducing risks and burdens and increasing benefits for participants, greater consumer input into study development, and shared and supported decision-making. Older persons' and caregivers' perspectives and experiences of research participation with impaired decision-making capacity require investigation in a greater range of countries and conditions other than dementia, and dissemination through more varied media.

Stimulated by insight: Exploration of critical care nurses' experience of research participation in a recovery programme for intensive care survivors.

To explore critical care nurses' experiences of research participation during a one-year recovery programme for intensive care survivors. Nurse-led postintensive care follow-up consultations have emerged to help patients to recover and overcome problems related to critical illness and admission at the intensive care unit (ICU). Previous research exploring post-ICU follow-up programmes have shown inconclusive evidence of their effectiveness on patient-reported outcome measurements, and provider evaluation is scarce. The context of this study is the Recovery and Aftercare in Postintensive care Therapy (RAPIT) trial. A qualitative descriptive telephone interview study. Data were collected after completion of the RAPIT trial. Participants (n=14) were trained intensive care nurses, who delivered the post-ICU recovery programme, representing nine out of ten sites from the RAPIT trial. Two focus group discussions were used to construct a semistructured interview guide. A thematic data analysis was performed using Braun and Clark's six-step method. This study conforms to the COREQ Research Reporting Guidelines for qualitative studies. Our study indicated that nurses considered participation in research as a positive experience. The main finding "Stimulated by insight" described how nurses' engagement and professional growth was gained by reflection, patient feedback and research competencies acquired in the clinical setting. The research programmes stimulated to new knowledge, broaden their perspectives and enhanced critical reflection of ICU nursing practice. The study indicates that nurses developed research competencies and enhanced their job satisfaction by using critical reflection and patient feedback. However, there is still a substantial need for support to strengthen nurses' competencies in collaboration with colleagues, managers and researchers. This study can contribute to the development of recommendations supporting nurses doing research and to optimise implementation of clinical research.

Silence, invisibility and agency: concealing pregnancies at school in Mozambique

Silence and invisibility have received relatively little scholarly attention. When they have, they have been mostly considered in deficit: something to avoid and walk away from. In this article, I depart from that mainstream position to contribute to the growing literature around how silence and invisibility may be positively associated with power. I do this by considering the case of Mozambique, in relation to the management of pregnancies in the school setting. Here, national policy 39/GM/2003 indicates that girls that get pregnant while in education should be transferred to night classes. This measure responds to wider imperatives to bridge the gender gap in education by attempting to limit the occurrence of pregnancies in mainstream education. Yet, the policy is met with resistances, as young women in education enact a number of strategies to conceal their pregnancies and, thereby, the transfer to night course. Against this backdrop, I ask: what do silence and invisibility tell us about agency and identity? I engage with this question by weaving the voices and experiences of research participants within theories of development, feminist theories and local discourses of gender. By doing this, I argue that silence and invisibility may be powerful tools for agency, which denote an understanding of the main discourses of gender on the girls’ part, but also the capability to use such discourses to one’s advantage.

Enriching our understanding of vulnerability through the experiences and perspectives of individuals living with mental illness

ABSTRACTVulnerability is a central concept in research ethics and typically serves to identify individuals or groups whose participation in research prompts specific concerns or warrants special consideration. While theoretical discussions on vulnerability have contributed valuable insights to discussions of mental health research and care, they have not been enriched thus far by stakeholder perspectives. This oversight has important consequences for the ways in which we frame vulnerability. It misses the far-reaching insights and experiential knowledge of mental health research participants whose experiences this ethics concept ultimately seeks to capture. In view of this gap, our study combines a pragmatist ethics framework and interpretive phenomenological analysis of qualitative interviews to explore user perspectives on the notion of vulnerability through the lived experiences of mental health research participants and patient-advocates. Importantly, these perspectives offer essential clues to address the difficulties of operationalizing concerns for vulnerability in concrete and practical ways. They help refine our understanding of this key ethics concept.

Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia

Trust may be important in shaping public attitudes to genetics and intentions to participate in genomics research and big data initiatives. As such, we examined trust in data sharing among the general public. A cross-sectional online survey collected responses from representative publics in the USA, Canada, UK and Australia (n = 8967). Participants were most likely to trust their medical doctor and less likely to trust other entities named. Company researchers were least likely to be trusted. Low, Variable and High Trust classes were defined using latent class analysis. Members of the High Trust class were more likely to be under 50 years, male, with children, hold religious beliefs, have personal experience of genetics and be from the USA. They were most likely to be willing to donate their genomic and health data for clinical and research uses. The Low Trust class were less reassured than other respondents by laws preventing exploitation of donated information. Variation in trust, its relation to areas of concern about the use of genomic data and potential of legislation are considered. These findings have relevance for efforts to expand genomic medicine and data sharing beyond those with personal experience of genetics or research participants.

Recurrent diabetic ketoacidosis and a brief history of brittle diabetes research: contemporary and past evidence in diabetic ketoacidosis research including mortality, mental health and prevention

Pharmacological, technological and educational approaches have advanced the treatment of Type 1 diabetes in the last four decades and yet diabetic ketoacidosis (DKA) continues to be a leading cause of admission in Type 1 diabetes. This article begins by reviewing the contemporary epidemiological evidence in DKA. It highlights a rise in DKA episodes in the last two decades, with DKA continuing to be the leading cause of death in young people with Type 1 diabetes, and that DKA episodes are a marker for subsequent all-cause mortality. It also summarizes the limited evidence base for DKA prevention and associations with psychopathology. To emphasize the importance of this group with high-risk Type 1 diabetes and the degree to which they have been overlooked in the past two decades, the article summarizes the research literature of recurrent DKA during 1976-1991 when it was extensively investigated as part of the phenomenon of 'brittle diabetes'. This period saw numerous basic science studies investigating the pathophysiology of recurrent DKA. Subsequently, research centres published their experiences of brittle diabetes research participants manipulating their treatment under research conditions. Unfortunately, the driver for this behaviour and whether it was indicative of other people with ketoacidosis was not pursued. In summary, we suggest there has been a stasis in the approach to recurrent DKA prevention, which is likely linked to historical cases of mass sabotage of brittle diabetes research. Further investigation is required to clarify possible psychological characteristics that increase the risk of DKA and thereby targets for DKA prevention.

Child and parent perceptions of participating in multimethod research in the acute aftermath of pediatric injury

Background: Despite growing evidence that participation in psychological trauma research is well tolerated by children and parents, ethics boards may voice concerns regarding research with families with recent acute trauma exposure. Factors impacting child and parent experiences of research participation are not well documented, particularly for methodologies including observational components. Objectives: This study describes child and parent perceptions of research participation involving an observational task following an acute traumatic event and explores potential relationships between research experience and selected demographic factors (race/ethnicity, sex, age, prior trauma exposure), and post-traumatic stress symptoms. Methods: As part of a larger study on the role of biopsychosocial factors in post-traumatic stress symptoms, 96 child–parent dyads (ages 8–12 years, M = 10.6) participated in a three–time point study following hospitalization for pediatric injury. At baseline, children and parents completed measures of reactions to research participation, post-traumatic stress symptoms, and trauma history. Measures of post-traumatic stress symptoms were repeated at 6- and 12-week follow-up assessments. Results: The majority of families reported they were glad they participated in the research study (61% children; 72% parents) and felt good about helping others (74% children; 93% parents). Negative feelings were uncommon (<10% of families). Perceptions of participation were not related to race, sex, or trauma history, but child age significantly factored into trust of the research team and informed consent (Spearman’s ρ = .289, p < .01). Reactions to research were not significantly related to child or parent post-traumatic stress symptoms at any time point. Conclusion: Current results extend past research to suggest that most children’s and parents’ research experience is positive, even when completing an observational task during hospitalization for an injury. Children under the age of 10 years may perceive their participation as less voluntary, supporting prior findings that additional steps be taken to ensure their understanding of their choice in participation.

"You helped me keep my head above water"-experience of bereavement research after loss of a loved one in the ICU: insights from the ARREVE study.

Bereavement research has helped to improve end-of-life practices in the ICU. However, few studies have explored bereaved relatives experience of research participation in this context. We aimed to explore the experience of bereaved relatives' participation in the ARREVE study which included three telephone follow-up calls to complete several quantitative tools. Volunteer relatives who participated in the 12-month follow-up call completed a questionnaire about research participation that included ten open-ended questions so that respondents could use their own words and thoughts. These open-ended questions were analyzed using qualitative analysis that examines themes within the data. 175/311 relatives completed the questionnaire. Three themes were derived from the thematic analysis: (1) struggling: reactivation of emotional distress associated with the ICU experience and the loss is frequent, specifically during the 1st follow-up call. (2) Resilience: as time goes by, research participation becomes increasingly positive. The calls are a help both in giving meaning to the relatives' experience and in accepting the loss. (3) Recognition: research calls can compensate for the absence of support during bereavement. Although some emotional difficulties must be acknowledged, bereavement research is overall associated with benefits, by facilitating emotional adjustments, meaning-making and resilience. Lack of support and social isolation during bereavement are frequent experiences, revealing that support strategies for bereaved relatives should be developed after the loss of a loved one in the ICU.

Employment for Disability: Human Resources Management in Higher Education for Quality

ABSTRACTThe aim of the research study aims to evaluate human resource management policies and strategies in higher education practices. As this research relies on qualitative nature, self report was conducted in order to gain experiences of research participants about human resources management process. In addition to this, maximum variation was conducted as a sampling method and 15 participants due to their managerial roles were involved to the research. Thematic analysis was conducted in analsying data. The results revealed that disability is an important factor im employment. Human resources management is key solution for the quality in higher education.

Facilitators and Barriers to Participating in a Randomized Controlled Trial of a Psychological Therapy for Substance Use.

Research involving substance users with psychosis has high refusal and attrition rates. Understanding participants' experiences of research participation is therefore important. Twenty-two cannabis users with schizophrenia spectrum disorders were recruited. They were involved in a randomized controlled trial exploring the effectiveness of motivational interviewing plus cognitive behavioral therapy. Semistructured interviews were conducted, and their responses were analyzed using thematic analysis. Thematic analysis identified facilitators such as therapeutic benefit, knowledge about medical conditions, awareness of own drug habits, helping others, confidentiality, rapport with researchers, desiring social contact, and views of significant others. Barriers identified were cognitive challenge, amount of assessments, duration, and discussions about the past. Based on these insights, we recommend informing participants about clinical equipoise, confidentiality, and demands of the study; minimizing demands on participants; acknowledging participants' efforts; involving potential participants' significant others during recruitment; advertising research as an opportunity to help; and training researchers in building rapport.

Women's Participation in Research on Intimate Partner Violence: Findings on Recruitment, Retention, and Participants' Experiences.

Research on intimate partner violence (IPV) faces unique challenges to recruitment and retention. Little is known about successful strategies for recruiting and retaining in research women who have experienced IPV, and their experiences of research participation. This article presents findings on recruitment, retention, and research participation experiences from a longitudinal observational study of IPV among women receiving care through the Veterans Health Administration. Administrative tracking data were analyzed to identify strengths, challenges, and outcomes of multiple recruitment strategies for an observational study of women patients who had experienced past-year IPV. Qualitative interviews with a purposively selected subset of the larger sample were used to identify motivations for and experiences of study participation. Of the total sample (N=169), 92.3% were recruited via direct outreach by the research team (63.3% via letter, 29.0% in person), compared with provider or patient self-referral (3.6% and 4.1%, respectively); 88% returned for a follow-up assessment. In qualitative interviews (n=50), participants expressed a desire to help others as a primary motivation for study participation. Although some participants experienced emotional strain during or after study visits, they also expressed perceiving value in sharing their experiences, and several participants found the experience personally beneficial. Participants expressed that disclosure was facilitated by interviewers' empathic and neutral stance, as well as the relative anonymity and time-limited nature of the research relationship. Direct outreach to women Veterans Health Administration patients to participate in research interviews about IPV experience was feasible and effective, and proved more fruitful for recruitment than reliance on provider or patient self-referral. Women who have experienced IPV may welcome opportunities to contribute to improvements in care through participation in interviews.

Experiences of People with Epilepsy during Art Therapy

Research background. Epilepsy is not only a central nervous system or brain disorder. It is a biological, psychological and social condition (Scambler, 2010). Children with epilepsy have a higher risk of having psychological disorders such as depression, anxiety and attention defcit disorders. The application of art therapy for people with epilepsy helps to express and understand feelings more effectively (Shore, 2014). Unfortunately, there is a lack of research that analyses the experience of epilepsy patients in art therapy. The aim of this article is to reveal and describe experiences of epileptic people during art therapy. Research questions: What experiences of epilepsy patients predominate in the collected thematic analysis data? What formal elements of drawing reflect the participants’ experiences? How does thematic analysis data relate to the data of formal elements analysis of drawings? Methods. Qualitative study in which the participants of the study were subjected to group art therapy. The data was analysed by the thematic method and the analysis of formal elements of the drawings. Results. The analysis of the verbal data revealed the individual themes of the study participants’ experiences. After drawing analysis formal elements were found that expressed the participants’ experiences. Conclusions. 1. Experiences dominating in thematic analysis are loneliness and confnement during difcult moments, as well as constant tension and internal confusion. 2. The experiences of research participants are reflected in these repeated formal elements of drawing: the use of confnes and framing, the use of black and red collars, fgurative and abstract depictions, the chaotic nature of the composition, the lack of concreteness in shapes, expressiveness, and incompleteness. 3. The thematic and formal drawing element analyses complement each other. Drawings that convey the illness-related experiences include confnes, framing, and black colour in the main elements of the composition. Drawing that reflects unpleasant feelings and experiences uses abstract depiction, chaotic compositions, the lack of concreteness in shapes, expressiveness and incompleteness.Keywords: epilepsy, art therapy, psychosocial risks.

3409 The Power of Phenotypic Extremes in Detecting Novel Genetic Modifiers of Hemophilia

OBJECTIVES/SPECIFIC AIMS: 1. To identify novel genetic modifiers that result in a mild bleeding phenotype in patients with FVIII <1%. 2. To examine the feasibility of a practice model that incorporates the principles and methods for both obtaining consent for NGS and returning individual research results from the sources described above. METHODS/STUDY POPULATION: 1. We plan a 3-step approach for identifying novel genetic modifiers of hemophilia: a. Obtain samples from individuals with an extremely mild bleeding phenotype: The study will be narrowed to patients with confirmed FVIII <1%, a null mutation in the gene for FVIII, and a mild bleeding phenotype according to a detailed bleeding history. b. Identify variants that modify phenotype: Whole exome sequencing will be performed, followed by a focused analysis of genes known or suspected to be involved in thrombosis and hemostasis and prediction of variant impact using algorithms that account for conservation and deleteriousness of all variants. c. Verify the impact of novel variants in independent samples: In silico (analyze genetic databases for suspected variants), in vivo (assess bleeding in animal models of hemophilia after introducing presumed modifier variants). 2. We will employ a model for obtaining informed consent and communicating individual genetic research results and results with potential clinical impact to research participants: a. The informed consent process will be performed after potential participants read a pamphlet entitled “Genetic Research at The Rockefeller University Hospital and Center for Clinical and Translational Science.” The pamphlet includes 16 questions that the potential participants are urged to ask the investigator, including, “What will you look for in my genetic information?”, “Will I receive results from this study?”. Potential participants will also be informed of the meaning of clinically actionable variants, either pathogenic variants related to phenotype or secondary (“incidental”) findings (i.e. variants unrelated to phenotype, the knowledge of which could lead to actions that may improve health). Participants who do not want to receive information about potentially actionable variants will be excluded from the study to avoid a situation where the investigator has clinically important information that cannot be shared with the participant. b. Genetic testing will be performed in a CLIA-certified lab to allow investigators to share the results with the study participants. c. Results will be reported to study participants according to a standard operating procedure (SOP) that classifies the report of variants according to the relation to phenotype and the pathogenic potential. d. Participant satisfaction with the informed consent process and the return of results will be assessed by a questionnaire for obtaining participants’ perceptions of their research experience, based on a standard set of validated research participation experiences measures (Kost RG et al, J Clin Transl Sci. 2018;2:31). RESULTS/ANTICIPATED RESULTS: Samples from individuals with severe null mutation hemophilia and a mild bleeding phenotype will be enriched in genetic modifier variants. After completing participation, participants will express satisfaction with the informed consent process and the results of the return of genetic information. DISCUSSION/SIGNIFICANCE OF IMPACT: Genetic risk assessment to predict bleeding risk has the potential to provide hemophilia patients with tailored therapy, allowing for very early initiation of treatment (prophylactic thrice weekly IV administration of FVIII) in patients with a high bleeding risk and deferring this costly and burdensome treatment in patients who are expected to be mild bleeders. Genetic modifier variants of hemophilia may be found to predict thrombosis in non-hemophiliac patients and profoundly impact the treatment of venous thrombosis. A structured process for obtaining consent for NGS and return of genetic results to study participants can protect them from uncertain genetic information. Moreover, this process will prevent a situation in which investigators have knowledge about clinically actionable variants but they are not allowed to report them to the participants or do not have a process for doing so. Sharing individual research results and results with clinical significance with participants of studies that involve whole exome sequencing can promote transparency and engagement of participants throughout the research enterprise.

Subjective reactions to international research participation: An illustration of ethical considerations with women heading households in Sri Lanka.

There are unique ethical considerations in conducting international research with war and disaster-affected populations that are important for ensuring adequate protection of participants. Of particular importance is the distress that participants may experience as a result of being asked about traumatic stressors, psychological symptoms, and life problems. In this study, trauma-affected Tamil women in Eastern Sri Lanka were asked to report on their research-participation experience after taking part in a larger study on risk and resiliency. Results indicated that most participants experienced emotional upset as a result of taking part in the study. However, the degree of distress was generally not more than they anticipated, and most participants reported they would have participated had they known in advance how they would feel. Most participants perceived some benefit as a result of participating and agreed that items were personally relevant. Emotional distress from participation positively correlated with culturally specific symptoms of anxiety and depression. Contextual stressors and social support were not associated with participation-related distress. We discuss these findings as well as general issues that might arise in international research with trauma-affected populations. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Patienthood and participation in the digital era.

The ‘digital era’ of informatics and knowledge integration has changed the roles and experiences of patients, research participants and health consumers. No longer figured (merely) as passive recipients of healthcare services or as beneficiaries of top-down biomedical information, individuals are increasingly seen as active contributors in healthcare and research. They are positioned into multiple roles that are experienced simultaneously by those who access and co-produce digital content that can easily be transformed into data. This is contextualised by ‘big data’ technologies that have altered biomedicine, enabling collation and analysis of myriad data from digitised records to personal mobile data. Social media facilitate new formations of communities and knowledge enacted online, while novel kinds of commercial value emerge from digital networks that enable health data commodification. In this paper, we draw from exemplary digital era shifts towards participatory medicine to cast light on the rapprochements between patienthood, participation and consumption, and we explore how these rapprochements are mediated by, and materialise through, the use of participatory digital technologies and big data. We argue that there is a need to use new conceptual tools that account for the multiple roles and experiences of patient–participant–consumers that co-emerge through digital technologies. We must also ethically re-assess the rights and responsibilities of individuals in the digital era, and the implications of digital era changes for the future of biomedicine and healthcare.

Words, Camera, Music, Action: A Methodology of Digital Storytelling in a Health Care Setting

In this technological age, storytelling is moving from oral and written to digital formats, creating many methodological opportunities for researchers and practitioners. This article explores a specific genre of participatory media production, digital storytelling (DST), which could be a valuable research tool to describe, analyze, and understand the experiences of research participants. Digital stories (DS) are short movies that use images, videos, a voice-over, and various video editing techniques to share an important story from the participant’s life. In a health care setting, DS can be used as knowledge translation tools for education and advocacy, as data to be analyzed in the research process, or as a therapeutic intervention, in any combination, depending on the intent of the project. Although an increasing number of health-related research studies indicate using DST, or some variation of it, there is a glaring paucity of methodologically focused manuscripts in the health care literature. This article delineates and describes four primary phases of DST in a health care context as finding the story, telling the story, crafting the story, and sharing the story. Both the creative and technical considerations of DST facilitation are elucidated through specific examples and practical concepts. By drawing from diverse literature such as narratology, film, and psychotherapy, and exploring new creative tools and ideas to help research participants convey meaning, this article provides a starting point for qualitative researchers to explore the use of DST in their own contexts.

Bereaved parents\u2019 experiences of research participation

BackgroundAs understandings of the impacts of end-of-life experiences on parents’ grief and bereavement increase, so too does the inclusion of bereaved parents into research studies exploring these experiences. However, designing and obtaining approval for these studies can be difficult, as guidance derived from bereaved parents’ experiences of the research process are limited within the current literature.MethodsWe aimed to explore bereaved parents’ experiences of research participation in a larger grounded theory study exploring experiences of the death of a child in the paediatric intensive care unit. Data were obtained during follow-up phone calls made to 19 bereaved parents, five of whom provided data from their spouse, 1 week after their participation in the study. Participants were asked to reflect on their experiences of research participation, with a focus on recruitment methods, timing of research contact, and the location of their interview. Parents’ responses were analysed using descriptive content analysis.ResultsOur findings demonstrate that despite being emotionally difficult, parents’ overall experiences of research participation were positive. Parents preferred to be contacted initially via a letter, with an opt in approach viewed most favourably. Most commonly, participants preferred that research contact occurred within 12–24 months after their child’s death, with some suggesting contact after 6 months was also appropriate. Parents also preferred research interviews conducted in their own homes, though flexibility and parental choice was crucial.ConclusionsFindings from this study offer further insight to researchers and research review committees, to help ensure that future studies are conducted in a way that best meets the unique needs of bereaved parents participating in research.

Cross-sectional survey of cognitive status and attitude of different population about biobanking donation

Objective To understand the cognition and attitude of patients, medical staff and medical examination people on biobanks and their willingness to donation. Methods A cross-sectional study was conducted among 452 individuals, including patients, medical staff and people receiving health checkup at a hospital in Beijing from July to September, 2017.The questionnaire assessed the respondents′ demographic data, general knowledge about biobanking and the factors influencing their willingness to donate specimens to biobanks.Pearson′s Chi-square test, student t test or ANOVA were used for univariate analysis.Additionally, the linear regression analysis and logistic regression analysis were used for multivariate analyses. Results A total of 452 questionnaires were delivered, and the effective questionnaires amounted to 440, including 196 medical staff, 123 patients and 121 health checkup individuals.The awareness score of biobanks was significantly different among the medical staff, patients and health checkup individuals(P<0.05). After adjustment for potential risk factors, we found that the population characteristics and the experience of participation in a medical research were the independent beneficial factors of the awareness score.The percentage of the willingness of donation in medical staff, health checkup individuals and patients were 83.7%, 76.9% and 70.7%, respectively.The results of univariate analyses suggested that the population characteristics, education level, health conditions, the history of blood donation, and the experience of participation in a medical research were significantly associated with the willingness to donate(all P<0.05). Population characteristics and health conditions were independently relevant to the willingness of donation, after multivariate analyses of logistic regression. Conclusions Despite the strong willingness to donate biospecimens, patients and health checkup individuals lack knowledge of biobanking. It is apparent that we need to strengthen promotions and to encourage the ethics and humanities to improve the knowledge of biosample donation, for healthy development of hospital-based biobanks. Key words: Questionnaires; Biobanks; Cognition; Willingness to donate; Population