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Accessing health services through the back door: a qualitative interview study investigating reasons why people participate in health research in Canada.

ABSTRACT: Although there is extensive information about why people participate in clinical trials, studies are largely based on quantitative evidence and typically focus on single conditions. Over the last decade investigations into why people volunteer for health research have become increasingly prominent across diverse research settings, offering variable based explanations of participation patterns driven primarily by recruitment concerns. Therapeutic misconception and altruism have emerged as predominant themes in this literature on motivations to participate in health research. This paper contributes to more recent qualitative approaches to understanding how and why people come to participate in various types of health research. We focus on the experience of participating and the meanings research participation has for people within the context of their lives and their health and illness biographies.This is a qualitative exploratory study informed by grounded theory strategies. Thirty-nine participants recruited in British Columbia and Manitoba, Canada, who had taken part in a diverse range of health research studies participated in semi-structured interviews. Participants described their experiences of health research participation including motivations for volunteering. Interviews were recorded, transcribed, and analyzed using constant comparisons. Coding and data management was supported by Nvivo-7.A predominant theme to emerge was 'participation in health research to access health services.' Participants described research as ways of accessing: (1) Medications that offered (hope of) relief; (2) better care; (3) technologies for monitoring health or illness. Participants perceived standard medical care to be a "trial and error" process akin to research, which further blurred the boundaries between research and treatment.Our findings have implications for recruitment, informed consent, and the dichotomizing of medical/health procedures as either research or treatment. Those with low health status may be more vulnerable to potential coercion, suggesting the need for a more cautious approach to obtaining consent. Our findings also indicate the need for boundary work in order to better differentiate treatment and research. It is important however to acknowledge a categorical ambiguity; it is not always the case that people are misinformed about the possible benefits of research procedures (i.e., therapeutic misconception); our participants were aware that the primary purpose of research is to gain new knowledge yet they also identified a range of actual health benefits arising from their participation.

SUBMITTER: Townsend A

PROVIDER: S-EPMC3853104 | biostudies-literature | 2013 Oct

REPOSITORIES: biostudies-literature

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Accessing health services through the back door: a qualitative interview study investigating reasons why people participate in health research in Canada.

Townsend Anne A Cox Susan M SM

BMC medical ethics 20131012

<h4>Background</h4>Although there is extensive information about why people participate in clinical trials, studies are largely based on quantitative evidence and typically focus on single conditions. Over the last decade investigations into why people volunteer for health research have become increasingly prominent across diverse research settings, offering variable based explanations of participation patterns driven primarily by recruitment concerns. Therapeutic misconception and altruism have ...[more]

PMID: 24119203

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Project description:IntroductionThe world is experiencing the Coronavirus pandemic and the aftermath consequences leading to lockdown and travel restrictions. The pandemic has brought a far-reaching impact on various sectors, including the economic, and health sectors. Therefore, this study analyses the possible impact of the COVID-19 pandemic on the disruption - in accessing family planning measures i.e. contraception facilities; and in seeking help from women organizations for health services.MethodsThis study has used the COVID-19 health services disruption survey-2020 and data was obtained from the Institute of Health Metrics and Evaluation. This survey was conducted in 76 countries using the smartphone-based premise data collection platform. Respondents were individual members of the general population ages 15-49 years who were identified as women. Data were collected from 12,354 respondents. Our data analysis has been done on both aggregate samples as well as region-wise samples (i.e. Africa, Asia, Europe, and Latin America & the Caribbean) to assess the change in levels of service delivery in both pre-COVID and post-COVID periods.ResultsDescriptive statistics results shows that two particular reasons - unable to access due to lockdown restrictions (5.4%), and fear of being infected with COVID-19 (9.7%) were reported as mostly impacting the access to contraception facilities due to lockdown restriction. Further, the logit regression using socio-economic and demographic variables suggests that geographical location (rural), and poor financial status turned out negative and significant, showing higher odds of facing difficulty than the reference category for the aggregate sample. The region-wise analysis suggests that Europe and Asia are the regions with the highest percentage of respondents reporting unavailability of services during COVID-19.ConclusionThe study concludes that pandemic-related emergencies affect the health care system, especially women-related health care services. The implication of our study indicates the requirement of a supply chain strategy for managing health care demand during emerging situations. So, the disruptions and bottlenecks in health care facilities should be addressed by various governments through appropriate policies and interventions.

Project description:Background There is a growing interest in redesigning healthcare systems to increase access to and coordination across care settings for people with chronic conditions. We aim to gain a better understanding of the barriers faced by (1) children with chronic bronchial asthma, (2) adults with non-specific chronic back pain, and (3) older people with pre-existing mental illness/es in Austria’s fragmented social health insurance system. Methods Using a qualitative design, we conducted semi-structured interviews face-to-face and by telephone with health service providers, researchers, experts by experience (persons with lived/ personal experience, i.e., service users, patient advocates or family members/carers), and employees in public health administration between July and October 2019. The analysis and interpretation of data were guided by Levesque’s model of access, a conceptual framework used to evaluate access broadly according to different dimensions of accessibility to care: approachability, acceptability, availability and accommodation, affordability, and appropriateness. Results The findings from the 25 expert interviews were organised within Levesque’s conceptual framework. They highlight a lack of coordination and defined patient pathways, particularly at the onset of the condition, when seeking a diagnosis, and throughout the care process. On the supply side, patterns of poor patient-provider communication, lack of a holistic therapeutic approach, an urban-rural divide, strict separation between social care and the healthcare system and limited consultation time were among the barriers identified. On the demand side, patients’ ability to perceive a need and to subsequently seek and reach healthcare services was an important barrier, closely linked to a patient’s socio-economic status, health literacy and ability to pay. Conclusions While studies on unmet needs suggest a very low level of barriers to accessing health care in the Austrian context, our study highlights potential ‘invisible’ barriers. Barriers to healthcare access are of concern for patients with chronic conditions, underlining existing findings about the need to improve health services according to patients’ specific needs. Research on how to structure timely and integrated care independent of social and economic resources, continuity of care, and significant improvements in patient-centred communication and coordination of care would be paramount. Supplementary Information The online version contains supplementary material available at 10.1186/s12913-022-08426-z.

Dataset Information

Accessing health services through the back door: a qualitative interview study investigating reasons why people participate in health research in Canada.

Publications

Accessing health services through the back door: a qualitative interview study investigating reasons why people participate in health research in Canada.

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