It's hard to reach the "hard-to-reach": the challenges of recruiting people who do not access preventative healthcare services into interview studies.
Ontology highlight
ABSTRACT:
SUBMITTER: Rockliffe L
PROVIDER: S-EPMC6127841 | biostudies-literature | 2018 Dec
REPOSITORIES: biostudies-literature
Publications
It's hard to reach the "hard-to-reach": the challenges of recruiting people who do not access preventative healthcare services into interview studies.
Rockliffe Lauren L Chorley Amanda J AJ Marlow Laura A V LAV Forster Alice S AS
International journal of qualitative studies on health and well-being 20181201 1
In this article, we discuss the challenges faced in recruiting "hard-to-reach" groups for interview studies, specifically those who do not access preventative healthcare services. We do this by reflecting on the varying success of different recruitment methods we have used in two recent studies; one investigating ethnic disparities in human papillomavirus vaccination uptake and another exploring difference in cervical screening non-participation. Engaging new community groups to help with recrui ...[more]
Similar Datasets
Project description:ObjectiveMarginalised populations are less likely to take part in health research, and are sometimes considered 'easy to ignore'. We aimed to describe our approach and results of recruiting parents who experience disadvantage, for focus groups exploring infant feeding on the island of Ireland. Upon receiving ethical approval, we implemented recruitment strategies that included building rapport with community organisations through existing networks, targeting specific organisations with information about our aims, and utilising social media groups for parents.ResultsWe approached 74 organisations of which 17 helped with recruitment. We recruited 86 parents/carers (one male) for 19 focus groups (15 urban/4 rural). Seventy two percent met at the eligibility criteria. Most participants were recruited through organisations (91%), and the remainder on social media (9%). Recruitment barriers included multiple steps, research fatigue, or uncertainty around expectations. Factors such as building rapport, simplifying the recruitment process and being flexible with procedures were facilitators. Despite comprehensive, multi-pronged approaches, the most marginalised parents may not have been reached. Further alternative recruitment strategies are required for recruiting fathers, rural populations, or those without the capacity or opportunity to engage with local services.
| S-EPMC8293495 | biostudies-literature
Project description:Sub-Saharan Africa bears the greatest burden of cervical cancer. Human papillomavirus (HPV) vaccination programmes to prevent the disease will need to reach vulnerable girls who may not be able access health and screening services in the future. We conducted formative research on facilitators and barriers to HPV vaccination and potential acceptability of a future HPV vaccination programme amongst girls living in hard-to-reach populations in Kenya.Stakeholder interviews with Ministry of Health staff explored barriers to and support for the uptake of HPV vaccination. A situation assessment was conducted to assess community services in Maasai nomadic pastoralist communities in Kajiado County and in Korogocho informal settlement in Nairobi city, followed by focus group discussions (n=14) and semi-structured interviews (n=28) with health workers, parents, youth, and community and religious leaders. These covered marriage, knowledge of cervical cancer and HPV, factors that might inhibit or support HPV vaccine uptake and intention to accept HPV vaccine if a programme was in place.Reported challenges to an HPV vaccination programme included school absenteeism and drop-out, early age of sex and marriage, lack of parental support, population mobility and distance from services. Despite little prior knowledge of cervical cancer and HPV, communities were interested in receiving HPV vaccination. Adequate social mobilisation and school-based vaccination, supplemented by out-reach activities, were considered important facilitating factors to achieve high coverage. There was some support for a campaign approach to vaccine delivery.Given the high level of support for a vaccine against cervical cancer and the experience of reaching pastoralist and slum-dwellers for other immunizations, implementing an HPV vaccine programme should be feasible in such hard-to-reach communities. This may require additional delivery strategies in addition to the standard school-based delivery, with vaccine offered at multiple venues, potentially through a campaign approach.
| S-EPMC4482601 | biostudies-other
Project description:BackgroundRecruiting participants to randomised controlled trials (RCTs) is often challenging, particularly when working with socially disadvantaged populations who are often termed 'hard-to-reach' in research. Here we report the recruitment strategies and costs for the Trial for Healthy Relationship Initiatives in the Very Early years (THRIVE), an RCT evaluating two group-based parenting interventions for pregnant women.MethodsTHRIVE aimed to recruit 500 pregnant women with additional health and social care needs in Scotland between 2014 and 2018. Three recruitment strategies were employed: (1) referrals from a health or social care practitioner or voluntary/community organisation (practitioner-led referral), (2) direct engagement with potential participants by research staff (researcher-led recruitment) and (3) self-referral in response to study advertising (self-referral). The number of referrals and recruited participants from each strategy is reported along with the overall cost of recruitment. The impact of recruitment activities and the changes in maternity policy/context on recruitment throughout the study are examined.ResultsTHRIVE received 973 referrals: 684 (70%) from practitioners (mainly specialist and general midwives), 273 (28%) from research nurses and 16 (2%) self-referrals. The time spent in antenatal clinics by research nurses each month was positively correlated with the number of referrals received (r = 0.57; p < 0.001). Changes in maternity policies and contexts were reflected in the number of referrals received each month, with both positive and negative impacts throughout the trial. Overall, 50% of referred women were recruited to the trial. Women referred via self-referral, THRIVE research nurses and specialist midwives were most likely to go on to be recruited (81%, 58% and 57%, respectively). Key contributors to recruitment included engaging key groups of referrers, establishing a large flexible workforce to enable recruitment activities to adapt to changes in context throughout the study and identifying the most appropriate setting to engage with potential participants. The overall cost of recruitment was £377 per randomised participant.ConclusionsRecruitment resulted from a combination of all three strategies. Our reflections on the successes and challenges of these strategies highlight the need for recruitment strategies to be flexible to adapt to complex interventions and real-world challenges. These findings will inform future research in similar hard-to-reach populations.Trial registrationInternational Standard Randomised Controlled Trials Number Registry ISRCTN21656568 . Retrospectively registered on 28 February 2014.
| S-EPMC8207826 | biostudies-literature
Project description:ObjectiveTo share the challenges of recruiting people with dementia to studies, using experiences from one recently completed trial as an exemplar.BackgroundResearch publications always cite participant numbers but the effort expended to achieve the sample size is rarely reported, even when the study involved recruiting a hard to reach population. A multisite study of a psychosocial intervention for people with dementia illustrates the challenges. This study recruited 468 'dyads' (a person with dementia and a family carer together) from 15 sites but the time taken to achieve this was longer than originally estimated. This led to a study extension and the need for additional sites. Recruitment data revealed that certain sites were more successful than others, but why? Can the knowledge gained be used to inform other studies?MethodsSecondary analysis of routinely collected recruitment data from three purposefully selected sites was examined to understand the strategies used and identify successful approaches.FindingsAt all three sites, the pool of potential recruits funnelled to a few participants. It took two sites 18 months longer than the third to achieve recruitment numbers despite additional efforts. Explanations given by potential participants for declining to take part included ill health, reporting they were 'managing', time constraints, adjusting to a diagnosis of dementia and burden of study procedures.ConclusionsSuccessful recruitment of people with dementia to studies, as one example of a hard to reach group, requires multiple strategies and close working between researchers and clinical services. It requires a detailed understanding of the needs and perspectives of the specific population and knowledge about how individuals can be supported to participate in research. Experiences of recruitment should be disseminated so that knowledge generated can be used to inform the planning and implementation of future research studies.
| S-EPMC6886904 | biostudies-literature
Project description:We tested the impact of personalized telephone calls from service center representatives on health plan enrollment in California's Affordable Care Act Marketplace, Covered California, using a randomized controlled trial. The study sample included 79,522 consumers who had applied but not selected a plan. Receiving a call increased enrollment by 2.7 percentage points (22.5 percent) overall. Among subgroups, receiving a call significantly increased enrollment among consumers with income below 200 percent of the federal poverty level (4.0 percentage points or 47.6 percent for consumers with incomes below 150 percent of poverty and 4.0 percentage points or 36.4 percent for consumers with incomes of 150-199 of poverty), as well as those who were referred from Medicaid (2.9 percentage points or 53.7 percent), those ages 30-50 (2.4 percentage points or 23.3 percent) or older than age 50 (5.1 percentage points or 34.2 percent), those who were Hispanic (2.3 percentage points or 31.1 percent), and those whose preferred spoken language was Spanish (3.2 percentage points or 74.4 percent) or English (2.6 percentage points or 18.6 percent). The intervention provided a two-to-one return on investment. Yet absolute enrollment in the target population remained low; persistent enrollment barriers may have limited the intervention's impact. These findings inform implementation of the American Rescue Plan Act of 2021, which expands eligibility for subsidized coverage.
| S-EPMC8844881 | biostudies-literature
Project description:Discrimination based on ethnicity and the lack of translation services in healthcare have been identified as main barriers to healthcare access. However, the actual experiences of migrant patients in Europe are rarely present in the literature. The aim of this study was to assess healthcare discrimination as perceived by migrants themselves and the availability of translation services in the healthcare systems of Europe. A total of 1407 migrants in 10 European Union countries (consortium members of the Mig-HealthCare project) were surveyed concerning healthcare discrimination, access to healthcare services, and need of translation services using an interviewer-administered questionnaire. Migrants in three countries were excluded from the analysis, due to small sample size, and the new sample consisted of N = 1294 migrants. Descriptive statistics and multivariable regression analyses were conducted to investigate the risk factors on perceived healthcare discrimination for migrants and refugees in the EU. Mean age was 32 (±11) years and 816 (63.26%) participants were males. The majority came from Syria, Afghanistan, Iraq, Nigeria, and Iran. Older migrants reported better treatment experience. Migrants in Italy (0.191; 95% CI [0.029, 0.352]) and Austria (0.167; 95% CI [0.012, 0.323]) scored higher in the Discrimination Scale to Medical Settings (DMS) compared with Spain. Additionally, migrants with better mental health scored lower in the DMS scale (0.994; 95% CI [0.993, 0.996]), while those with no legal permission in Greece tended to perceive more healthcare discrimination compared with migrants with some kind of permission (1.384; 95% CI [1.189, 1.611]), as opposed to Austria (0.763; 95% CI [0.632, 0.922]). Female migrants had higher odds of needing healthcare assistance but not being able to access them compared with males (1.613; 95% CI [1.183, 2.199]). Finally, migrants with chronic problems had the highest odds of needing and not having access to healthcare services compared with migrants who had other health problems (3.292; 95% CI [1.585, 6.837]). Development of culturally sensitive and linguistically diverse healthcare services should be one of the main aims of relevant health policies and strategies at the European level in order to respond to the unmet needs of the migrant population.
| S-EPMC8345338 | biostudies-literature
Project description:BackgroundKerala, a southern state in India, is known to be atypical due to its high literacy rate and advanced social development indicators. Facing competition from a dominant private healthcare system, recent government health system reforms have focused on providing free, high-quality universal healthcare in the public sector. We carried out an analysis to ascertain the initial impacts of these measures among 'hard to reach groups' as part of a larger health policy and systems research study, with a focus on public sector health service utilisation.MethodsWe conducted Focus Group Discussions (FGDs) among identified vulnerable groups across four districts of Kerala between March and August of 2022. The FGDs explored community perspectives on the use of public healthcare facilities including enablers and barriers to healthcare access. Transliterated English transcripts were coded using ATLAS.ti software and thematically analyzed using the AAAQ framework, supplemented with inductive code generation.ResultsA total of 34 FGDs were conducted. Availability and cost-effectiveness were major reasons for choosing public healthcare, with the availability of public insurance in inpatient facilities influencing this preference. However, accessibility of public sector facilities posed challenges due to long journeys and queues. Uneven roads and the non-availability of public transport further restricted access. Gaps in acceptability were also observed: participants noted the need for the availability of special treatments available, reduced waiting times for special groups like those from tribal communities or the elderly mindful of their relatively greater travel and need for prompt care. Although quality improvements resulting from health reform measures were acknowledged, participants articulated the need for further enhancements in the availability and accessibility of services so as to make public healthcare systems truly acceptable.ConclusionThe 'Kerala Model of Development' has been applauded internationally for its success in recent years. However, this has not inured the state from the typical barriers to public sector health care use articulated by participants in the study, which match global evidence. In order to deepen the impact of public sector reforms, the state must try to meet service user expectations- especially among those left behind. This requires attention to quality, timeliness, outreach and physical access. Longer term impacts of these reforms - as we move to a post-COVID scenario - should also be evaluated.
| S-EPMC11312678 | biostudies-literature
Project description:BackgroundIn recent years, there has been a proliferation of third-party Web-based services available to consumers to interpret raw DNA from direct-to-consumer genetic testing companies. Little is known about who uses these services and the downstream health implications. Identifying this hard-to-reach population of consumers for research raised questions about the most effective recruitment methods to undertake. Past studies have found that Web-based social media survey distribution can be cost-effective for targeting hard-to-reach populations, yet comparative efficacy information across platforms is limited.ObjectiveThe aim of this study was to identify the most effective Web-based strategies to identify and recruit the target population of direct-to-consumer genetic testing users who also made use of third-party interpretation services to analyze their raw genetic data. Web-based survey recruitment methods varying by social media platform and advertising method were compared in terms of cost-effectiveness and demographics of survey respondents.MethodsA total of 5 Web-based survey distribution conditions were examined: 4 paid advertising services and 1 unpaid service. For the paid services, a 2x2 quasi-experimental design compared social media platforms (Facebook vs Twitter) and advertising tracking metrics (by click vs by conversion). The fifth unpaid comparison method consisted of study postings on the social media platform, Reddit, without any paid advertising. Links to identical Web-based versions of the study questionnaire were posted for 10 to 14 days for each of the distribution conditions, which allowed tracking the number of respondents that entered and completed the questionnaire by distribution condition.ResultsIn total, 438 individuals were recruited to the study through all conditions. A nearly equivalent number of participants were recruited from paid campaigns on Facebook (n=159) and Twitter (n=167), with a smaller sample recruited on Reddit (n=112). Significantly more participants were recruited through conversion-tracking (n=222) than through click-tracking campaigns (n=104; Z=6.5, P<.001). Response rates were found to be partially driven by organic sharing of recruitment materials among social media users. Conversion tracking was more cost-effective than click tracking across paid social media platforms. Significant differences in terms of gender and age distributions were noted between the platforms and between the tracking metrics.ConclusionsWeb-based recruitment methods were effective at recruiting participants from a hard-to-reach population in a short time frame. There were significant differences in the effectiveness of various paid advertising techniques. Recruitment through Web-based communities also appeared to perform adequately, yet it may be limited by the number of users accessible in open community groups. Future research should evaluate the impact of organic sharing of recruitment materials because this appeared to play a substantial role in the observed effectiveness of different methods.
| S-EPMC6691676 | biostudies-literature
Project description:Background: In low-income countries such as Benin, most people have poor access to healthcare services. There is scarcity of evidence about barriers to accessing healthcare services in Benin. Therefore, we examined the magnitude of the problem of access to healthcare services and its associated factors. Methods: We utilized data from the 2017-2018 Benin Demographic and Health Survey (n = 15,928). We examined the associations between the demographic and socioeconomic characteristics of women using multilevel logistic regression. The outcome variable for the study was problem of access to healthcare service. Adjusted odds ratios (AORs) with 95% confidence intervals (95% CI) were estimated. Results: Overall, 60.4% of surveyed women had problems in accessing healthcare services. Partner's education (AOR = 0.70; 95% CI; 0.55-0.89), economic status (AOR = 0.59; 95% CI; 0.47-0.73), marital status (AOR = 0.44; 95% CI; 0.39-0.51), and parity (AOR = 1.85; 95% CI; 1.45-2.35) were significant individual-level factors associated with problem of access to healthcare. Region (AOR = 5.24; 95% CI; 3.18-8.64) and community literacy level (AOR = 0.69; 95% CI; 0.51-0.94) were the main community-level risk factors. Conclusions: Enhancing husband education through adult education programs, economic empowerment of women, enhancing national education coverage, and providing priority for unmarried and multipara women need to be considered. Additionally, there is the need to ensure equity-based access to healthcare services across regions.
| S-EPMC7830614 | biostudies-literature
Project description:This study aimed to determine associations of healthcare access problems with services use among US children with autism spectrum disorder. We analyzed 2011-2014 National Health Interview Survey data on 651 children with autism spectrum disorder aged 2-17?years. There were three measures of healthcare access problems: (1) delays accessing healthcare, (2) difficulty affording healthcare, and (3) trouble finding a primary care provider. There were five service use measures: (1) ?4 office visits, (2) ?1 well-child visit, (3) flu vaccine, (4) prescription medication, and (5) ?1 emergency department visit. Multivariable regression models estimated associations of ?1 healthcare access problem with each service use variable and effect modification by socioeconomic status and race and ethnicity. Twenty-nine percent of children with autism spectrum disorder had ?1 healthcare access problem. Having ?1 healthcare access problem was associated with lower adjusted odds of ?1 well-child visit or prescription medication use but higher adjusted odds of ?4 office visits or ?1 emergency department visit. No significant association was found for flu vaccine. Associations of healthcare access problems with emergency department use were most pronounced for higher socioeconomic status and White, non-Hispanic subgroups. Intervention, such as insurance expansion, is needed to improve healthcare access for children with autism spectrum disorder.
| S-EPMC6941887 | biostudies-literature