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Community Mental Health Journal Oct 2016Community-academic partnerships (CAPs) improve the research process, outcomes, and yield benefits for the community and researchers. This exploratory study examined...
Community-academic partnerships (CAPs) improve the research process, outcomes, and yield benefits for the community and researchers. This exploratory study examined factors important in community stakeholders' decision to participate in CAPs. Autism spectrum disorder (ASD) community stakeholders, previously contacted to participate in a CAP (n = 18), completed the 15-item Decision to Participate Questionnaire (DPQ). The DPQ assessed reasons for participating or declining participation in the ASD CAP. CAP participants rated networking with other providers, fit of collaboration with agency philosophy, and opportunity for future training/consultations as factors more important in their decision to participate in the ASD CAP than nonparticipants. Nonparticipants reported the number of requests to participate in research as more important in their decision to decline participation than participants. Findings reveal important factors in community stakeholders' decision to participate in CAPs that may provide guidance on increasing community engagement in CAPs and help close the science-to-service gap.
Topics: Autism Spectrum Disorder; Biomedical Research; Child; Community Participation; Community-Based Participatory Research; Community-Institutional Relations; Female; Humans; Male; Surveys and Questionnaires; Universities
PubMed: 25976376
DOI: 10.1007/s10597-015-9890-4 -
Trauma, Violence & Abuse Jul 2023Despite an increasing emphasis on adolescents' participation rights, there are concerns about their participation in research on sensitive topics, such as trauma and... (Review)
Review
Despite an increasing emphasis on adolescents' participation rights, there are concerns about their participation in research on sensitive topics, such as trauma and violence. This review reports findings of a scoping review that examined the nature and extent of qualitative studies conducted with adolescents about their experiences of participating in research on sensitive topics. Studies were identified by searching electronic databases and grey literature and reported on qualitative and mixed-methods studies eliciting adolescents' experiences of participating in research on sensitive topics. Seventeen (17) studies were included after screening 4426 records. The scoping review revealed significant adolescent benefits from participation, relating to positive emotions, skill acquisition and enhanced self-efficacy and interpersonal relationships. To a lesser extent, participants also experienced burdens relating to negative emotions, concerns about confidentiality and privacy and inconvenience of participation, which were mitigated by careful attention to research design and researcher engagement and training. Participants shared insights into their motivation to participate, and factors that impacted their experiences of research, such as ethical considerations, including consent procedures, safety and connection in research, study procedures and documentation and researcher characteristics. There were tangible benefits and some burdens involved in adolescents' participation in sensitive research. This review considers implications for research and practice, such as the need to regularly publish findings of consultations, assessing caregiver consent requirements, obtaining adolescent views on study documents and measures and building on existing research, differentiated by age, gender and dis/ability status, especially in diverse and under-represented regions.
Topics: Humans; Adolescent; Qualitative Research; Interpersonal Relations; Violence; Motivation
PubMed: 35044869
DOI: 10.1177/15248380211069072 -
European Journal of Cancer (Oxford,... Nov 2022Many European countries offer organised population-based breast, cervical, and colorectal cancer screening programmes. Around age 55 and 60, Dutch women are invited to...
BACKGROUND
Many European countries offer organised population-based breast, cervical, and colorectal cancer screening programmes. Around age 55 and 60, Dutch women are invited to all three screening programmes. We examined the extent to which participation concurs and identified factors influencing concurrent participation.
MATERIALS AND METHODS
Individual level data from breast, cervical, and colorectal cancer screening invitations between 2017 and 2019 were extracted from the Dutch screening registry. The percentages of women participating in all three, two, one, or none of the programmes around age 55 and 60, and before subsequent round invitation were determined. Multivariate ordinal regression analyses were performed to estimate whether population density, socio-economic status (SES) per postal code area, and time between the three invitations (<3, 3-6, >6 months) were associated with concurrent participation.
RESULTS
Data from 332,484 women were analysed. At age 55, 53.7% participated in all three programmes, 22.1% in two, 11.7% in one, and 12.6% did not participate at all. At age 60, a similar participation pattern was observed. Women living in areas with higher population density were less likely (odds ratios 0.75-0.94) and women in higher SES groups were more likely (odds ratios 1.12-1.60) to participate in more screening programmes, although this positive association was smaller for the highest SES group. No substantial association was found between concurrent participation and timing of invitations.
CONCLUSIONS
More than half of Dutch women participated in all three screening programmes and around 12% did not participate in any. Concurrent participation was lower in cities and lower SES groups.
Topics: Breast Neoplasms; Colorectal Neoplasms; Early Detection of Cancer; Female; Humans; Mass Screening; Middle Aged; Netherlands; Uterine Cervical Neoplasms
PubMed: 36126478
DOI: 10.1016/j.ejca.2022.08.018 -
Games For Health Journal Apr 2023Cognitive and physical activity are important for daily functioning. However, limited research exists on the motivators and barriers associated with older adults...
Cognitive and physical activity are important for daily functioning. However, limited research exists on the motivators and barriers associated with older adults participating and adhering to exergame studies that promote physical and cognitive activity. Our objective was to examine older adults' motivators and barriers to joining and completing a three-dimensional exergame study. Fourteen older adults who participated in the exergame study contributed to one of three focus group discussions. Inductive and deductive methods were used to analyze the qualitative data. Motivators for joining were generativity, peer referrals, self-improvement, and curiosity. Accomplishment, immersion, and exercise were motivators for retention. Participants also cited the structured schedule and adaptive difficulty features as motivators for retention. Barriers to participation included frustration due to lack of level advancement and fatigue/pain during gameplay. Some ( = 3) reported camera tracking issues as a barrier. Unanticipated gender-based trends arose when examining perceptions of the study team's role and motivators for retention. These findings will inform future research strategies for participant recruitment, enrollment, and retention, in addition to providing insights into the design of motivating, enjoyable, and sustainable exergames for older adults.
Topics: Humans; Aged; Exergaming; Exercise; Focus Groups
PubMed: 36706426
DOI: 10.1089/g4h.2022.0131 -
Public Health Apr 2022The aim of the present analysis is to identify the reasons for accepting or rejecting the invitation to be screened by the Faecal Immunochemical Test as part of the free...
OBJECTIVES
The aim of the present analysis is to identify the reasons for accepting or rejecting the invitation to be screened by the Faecal Immunochemical Test as part of the free Danish screening programme for colorectal cancer (CRC).
STUDY DESIGN
A cross-sectional representative survey of 15,072 Danish citizens aged 50-80 years was collected in 2019 via a Web-based questionnaire administered by Statistics Denmark. Among the net sample of 6807 respondents (45%), 177 were excluded because of current treatment for colorectal disease.
METHODS
To determine the reasons for accepting or refusing the invitation to be screened for CRC, a latent class analysis was conducted, which allowed participants to provide several reasons for acceptance or rejection of screening.
RESULTS
The most important reason for participating in CRC screening was the active public programme. A further reason for participation was the perceived risk for CRC, mainly in combination with the public programme. The reasons for participation did not differ between individuals who had participated and those who intended to participate when offered. Among participants who declined screening, the most frequent reasons were that they forgot to participate or that they were concerned about the unpleasant test procedure. Among individuals who intended to decline screening, a perceived low risk for CRC was the most frequently cited reason.
CONCLUSIONS
Recommendation from a general practitioner (GP) was not given as a frequent reason for CRC screening participation which is discussed as a challenge to participation rates in population based screening program The main reasons reported for non-participation in CRC screening (i.e. forgot to participate or the unpleasant test procedure) might be addressed by a stronger endorsement from GPs.
Topics: Colorectal Neoplasms; Cross-Sectional Studies; Early Detection of Cancer; Humans; Mass Screening; Occult Blood
PubMed: 35248951
DOI: 10.1016/j.puhe.2022.01.010 -
Archives of Rehabilitation Research and... Sep 2022To characterize how survivors of cancer define participation.
OBJECTIVE
To characterize how survivors of cancer define participation.
DESIGN
Cross-sectional qualitative study.
SETTING
Participants were enrolled from a large academic medical center in the Midwestern United States. Interviews were conducted over Zoom or phone.
PARTICIPANTS
Survivors of cancer (N=40) with brain, breast, colorectal, or lung cancer (n=10 per group). Participants were purposively sampled to maximize variation in the study sample. Participant ages ranged from 26-83 years, with a mean age of 55 years. Seventy percent of participants were receiving active cancer treatment at the time of the interview.
INTERVENTIONS
Not applicable.
MAIN OUTCOME MEASURES
Participant perspectives gathered from 1-on-1 semistructured interviews. Qualitative description and thematic analysis were used to analyze interview transcripts and develop themes from the data.
RESULTS
Survivors described participation as doing valued activities and highlighted 4 common aspects: (1) control; (2) social connection; (3) engaging in various contexts; and (4) cultivation of joy and purpose. Fully participating in life involved being able to do what they want to do without restrictions or limitations. Survivors' perspectives of control outlined how competence, choice, adaptations, and locus of control influence broader feelings of control and participation. Interviews highlighted that participation remains central to daily life among survivors of cancer.
CONCLUSIONS
Rehabilitation researchers and clinicians need to establish a standard and comprehensive definition of participation. Rehabilitation providers need to consistently evaluate how participation is affected among survivors of cancer and use measures that include core aspects of participation identified in this study and previous research. Comprehensively defining participation will improve the design and selection of measurement tools and support comprehensive assessment of survivor experiences.
PubMed: 36123981
DOI: 10.1016/j.arrct.2022.100212 -
BMC Public Health Jan 2022Interventions that increase population physical activity are required to promote health and wellbeing. parkrun delivers community-based, 5 km events worldwide yet 43%...
Interventions that increase population physical activity are required to promote health and wellbeing. parkrun delivers community-based, 5 km events worldwide yet 43% who register never participate in a parkrun event. This research had two objectives; i) explore the demographics of people who register for parkrun in United Kingdom, Australia, Ireland, and don't initiate or maintain participation ii) understand the barriers to participating in parkrun amongst these people. Mandatory data at parkrun registration provided demographic characteristics of parkrun registrants. A bespoke online survey distributed across the three countries captured the reasons for not participating or only participating once. Of 680,255 parkrun registrants between 2017 and 19, 293,542 (43%) did not participate in any parkrun events and 147,148 (22%) only participated in one parkrun event. Females, 16-34 years and physically inactive were more likely to not participate or not return to parkrun. Inconvenient start time was the most frequently reported barrier to participating, with females more likely than males to report the psychological barrier of feeling too unfit to participate. Co-creating strategies with and for people living with a chronic disease, women, young adults, and physically inactive people, could increase physical activity participation within parkrun.
Topics: Australia; Exercise; Female; Health Promotion; Humans; Male; Surveys and Questionnaires; United Kingdom; Young Adult
PubMed: 35027014
DOI: 10.1186/s12889-022-12546-w -
The Indian Journal of Medical Research Jan 2020Comprehension and process of consent are important for persons with mental illness as they may not be impaired in considering research participation. The American...
BACKGROUND & OBJECTIVES
Comprehension and process of consent are important for persons with mental illness as they may not be impaired in considering research participation. The American Psychiatric Association developed a detailed Cultural Formulation Interview (CFI). The present study was a part of field testing of CFI, aimed to standardize cultural information affecting the patients' management in India. This paper describes the process and conclusions from the consent-seeking process of this study.
METHODS
The purpose and procedures about field trial of the CFI were introduced and the patient and caregiver were requested for participation. Consent process was carried out step by step, by reading out the consent form to the first new patient of the day in the psychiatry outpatients department of a tertiary care hospital in north India, inviting questions followed by the 'comprehension' questions. The entire process was audiotaped without any personal identifiers. The process was repeated if not comprehended.
RESULTS
A total of 67 patients consented, 11 refused and majority were educated more than secondary school. Some concerns shown by the patients and caregivers included risk of participation, loss or benefits of participation, privacy, etc. All types of mentally ill patients participated in the study.
INTERPRETATION & CONCLUSIONS
Translations of consent forms used simple words, consonant with understanding of the potential participants. Patients' belief that participating in this long process would improve their care, and serve humanity, influenced their decision to participate. Except for intoxication and severe psychosis, patients could understand and comprehend issues around consent. Main issues were confidentiality and culture. Our experience in the psychiatry OPD refutes the commonly held belief that mentally ill persons lack comprehension and ability to consent.
Topics: Comprehension; Female; Humans; India; Informed Consent; Interview, Psychological; Male; Mental Disorders
PubMed: 32134012
DOI: 10.4103/ijmr.IJMR_1036_18 -
Health Expectations : An International... Aug 2022Long-term follow-up is necessary to understand the impact of perinatal interventions. Exploring parents' motives and experiences in consenting to their children taking...
BACKGROUND
Long-term follow-up is necessary to understand the impact of perinatal interventions. Exploring parents' motives and experiences in consenting to their children taking part in longitudinal studies and understanding what outcomes are important to families may enhance participation and mitigate the loss to follow-up. As existing evidence is largely based on investigators' perspectives using Western samples, the present pilot study explored parents' perspectives in a multicultural New Zealand context.
METHODS
Data were generated using semi-structured interviews with parents whose children had participated in a longitudinal study after neonatal recruitment. Parents' experiences of being part of the study were analysed thematically using an inductive approach.
RESULTS
Parents (n = 16) were generally happy with the outcomes measured. Additionally, parents were interested in lifelong goals such as the impact of parental diabetes. We identified three themes: (1) Facilitators: Research participation was aided by motives and parent and research characteristics such as wishing to help others and straightforward recruitment; (2) Barriers: A hesitancy to participate was due to technical and clinical research aspects, participation burden and cultural barriers, such as complex wording, time commitment and nonindigenous research and (3) Benefits: Children and parents experienced advantages such as the opportunity for education.
CONCLUSIONS
Parents reported positive experiences and described the unexpected benefit of increasing families' health knowledge through participation. Improvements for current follow-up studies were identified. Different ethnicities reported different experiences and perspectives, which warrants ongoing research, particularly with indigenous research participants.
PATIENT OR PUBLIC CONTRIBUTION
No active partnership with parents of patients took place.
Topics: Child; Follow-Up Studies; Humans; Infant, Newborn; Longitudinal Studies; Parents; Pilot Projects; Qualitative Research
PubMed: 35393722
DOI: 10.1111/hex.13473 -
Women and Birth : Journal of the... Mar 2020Prioritisation of stillbirth research in high-income countries is required to address preventable stillbirth. However, concern is raised by ethics committees, maternity...
BACKGROUND
Prioritisation of stillbirth research in high-income countries is required to address preventable stillbirth. However, concern is raised by ethics committees, maternity providers and families, when pregnant and bereaved women are approached to participate. Our aim was to 1) assess factors influencing recruitment in a multicentre case-control stillbirth study and 2) gain insight into how women felt about their participation.
METHODS
Eligible women were contacted through maternity providers from seven New Zealand health regions in 2011-2015. Cases had a recent singleton non-anomalous late stillbirth (≥28 weeks' gestation). Controls were randomly selected and matched for region and gestation. Participants were interviewed by a research midwife and given a feedback form asking their views about participation. Feedback was evaluated using thematic analysis.
RESULTS
169 (66.5%) of 254 eligible cases and 569 (62.2%) of 915 eligible controls were recruited. Non-participants consisted of 263 (22.5% of eligible) women who declined, 108 (9.2% of eligible) uncontactable women, and 60 (5.1% of eligible) women declined by the maternity provider, with no significant differences between the proportion of non-participating cases and controls in each of these three categories. The majority (63.2%) of women did not provide a specific reason for non-participation. Written feedback was provided by 111 participants (cases 15.3%, controls 14.9%) and all described their involvement positively. Feedback themes identified were 'motivation to participate,' 'ease of participation,' and 'post-participation positivity.'
CONCLUSION
Identification of recruitment barriers and our reassuring participant feedback may assist women's participation in future research and support progress towards stillbirth prevention.
Topics: Adult; Case-Control Studies; Female; Gestational Age; Humans; Motivation; New Zealand; Patient Selection; Pregnancy; Research; Stillbirth; Young Adult
PubMed: 30954481
DOI: 10.1016/j.wombi.2019.03.010