Patient and physician perspectives on engaging in palliative and healthcare trials: a qualitative descriptive study

Abstract Background Researchers are encountering increasing challenges in recruiting participants for palliative and healthcare research. This paper aims to understand challenges to and methods for engaging physicians and seriously ill patients and their caregivers in research studies. Methods Between October 2019 to July 2020, we conducted qualitative interviews with 25 patients, proxies, and caregivers participants who were eligible for a randomized controlled trial of home-based palliative care and 31 physicians from participating accountable care organizations. Using thematic analysis, we analyzed participants’ responses to identify concepts and key ideas within the text. From these initial concepts, core themes around barriers to research and preferred research recruitment approaches were generated. Results Themes from patient and caregiver interviews included time constraints, privacy concerns, lack of research familiarity, disconnect with research institution, self-perceived health status, and concerns with study randomization. Physician-identified barriers focused on time constraints and study randomization. Patient and caregiver recommendations for study recruitment included in-person recruitment, recruitment at healthcare providers’ offices, recruitment via mail, additional study information, and frequent calls. Physician recommendations were related to placement of flyers at clinics, financial incentives, and formal events. Conclusions Findings demonstrated that although patients and caregivers prefer that their physicians recruit them for health-related research studies, physicians identified time constraints as a consistent barrier to research involvement.

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Reluctance to Accept Palliative Care and Recommendations for Improvement

Innovation in Aging ◽

10.1093/geroni/igab046.636 ◽

2021 ◽

Vol 5 (Supplement_1) ◽

pp. 168-168

Author(s):

Anna Rahman ◽

YuJun Zhu ◽

Susan Enguidanos ◽

Valeria Cardenas

Keyword(s):

Palliative Care ◽

Controlled Trial ◽

Healthcare Providers ◽

Health Condition ◽

Insurance Companies ◽

Individual Interviews ◽

Palliative Care Education ◽

Home Based ◽

Care Information ◽

Seriously Ill Patients

Abstract Although insurance companies are increasingly paying for home-based palliative care (HBPC), enrollment remains low. To identify patient and caregiver perceived barriers to HBPC and their recommendations for overcoming these barriers, we conducted semi-structured individual interviews. Our interview protocol elicited participants’ perspectives on HBPC services; positive and negative aspects of the palliative program explanation; and suggestions for improving HBPC messaging. Seventeen patients and eight caregivers who were eligible for a randomized controlled trial of HBPC were interviewed. Themes related to HBPC referral barriers included reluctance to have home visits, enrollment timing, lack of palliative care knowledge, and patients’ self-perceived health condition. Themes related to recommendations for overcoming these obstacles included ensuring that HBPC referrals come from healthcare providers or insurance companies and presenting HBPC more clearly. Findings reinforce the need for palliative care education among seriously ill patients and the importance of delivering palliative care information and referrals from trusted sources.

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Reluctance to Accept Palliative Care and Recommendations for Improvement: Findings From Semi-Structured Interviews With Patients and Caregivers

American Journal of Hospice and Palliative Medicine® ◽

10.1177/10499091211012605 ◽

2021 ◽

pp. 104990912110126

Author(s):

Valeria Cardenas ◽

Anna Rahman ◽

Yujun Zhu ◽

Susan Enguidanos

Keyword(s):

Palliative Care ◽

Controlled Trial ◽

Insurance Coverage ◽

Healthcare Providers ◽

Health Condition ◽

Insurance Companies ◽

Structured Interviews ◽

Care Services ◽

Home Based ◽

Palliative Care Services

Background: Despite some insurance plans now paying for home-based palliative care, recent reports have suggested that insurance coverage for palliative care may be insufficient in expanding patient access to home-based palliative care. Aim: To identify patients’ and caregivers’ perceived barriers to home-based palliative care and their recommendations for overcoming these barriers. Design: We conducted a qualitative study using semi-structured individual interviews. Our interview protocol elicited participants’ perspectives on home-based palliative care services; positive and negative aspects of the palliative program explanation; and suggestions for improving messaging around home-based palliative care. Setting/Participants: Twenty-five participants (patients, proxies, and their caregivers) who were eligible for a randomized controlled trial of home-based palliative care were interviewed by telephone. Results: Themes related to home-based palliative care referral barriers included reluctance to have home visits, enrollment timing, lack of palliative care knowledge, misconceptions about palliative care, and patients’ self-perceived health condition. Themes related to recommendations for overcoming these obstacles included ensuring that palliative care referrals come from healthcare providers or insurance companies and presenting palliative care services more clearly. Conclusion: Findings reinforce the need for additional palliative care education among patients with serious illness (and their caregivers) and the importance of delivering palliative care information and referrals from trusted sources.

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Recruitment And Retention Of Participants From Socioeconomically Deprived Communities: Lessons From The Awareness And Beliefs About Cancer (ABACus3) Randomised Controlled Trial

10.21203/rs.3.rs-33953/v1 ◽

2020 ◽

Author(s):

Vasiliki Kolovou ◽

Yvonne Moriarty ◽

Stephanie Gilbert ◽

Harriet Quinn-Scoggins ◽

Julia Townson ◽

...

Keyword(s):

Financial Incentives ◽

Controlled Trial ◽

Qualitative Interviews ◽

Randomised Control Trial ◽

Trial Participant ◽

Community Settings ◽

Research Strategies ◽

Healthcare Settings ◽

Randomised Controlled ◽

Deprived Areas

Abstract Background Recruitment of research participants poses challenges in socioeconomically deprived areas. The Awareness and Beliefs About Cancer (ABACus) phase 3 Randomised Control Trial recruited adult participants from socioeconomically deprived areas using a combined healthcare/community engagement model. We report the strategies used to successfully recruit and retain our trial participant sample. Methods Community and healthcare settings in areas of high socioeconomic deprivation were identified by lay advisors who recruited participants opportunistically or by appointment. Follow-up was done by telephone or post at 2-weeks and 6-months after recruitment, and all participants were offered financial incentives. Qualitative interviews were conducted with lay advisors regarding their experience and reflections. Results The lay advisors identified and contacted 107 potential recruitment venues across South and West Yorkshire and South East Wales of which 41.1% (n = 42) were opened for recruitment. A total of 234 participants were recruited, with 91% (n = 212) retention at 2-weeks and 85% (n = 199) at 6-months. Community settings yielded 75% (n = 176) of participants. Participants had a mean age of 61.3 years and 63.3% (n = 148) were female, with 66% (n = 154) resident in the most deprived geographical areas. Lay advisors described recruitment as intensive, although engaging participants was easier in community settings. Conclusions The ABACus3 trial achieved recruitment and high retention with a population that is often “hard to reach” or entirely missed in health research. Strategies were specifically tailored to engage the venues and adult residents of highly deprived areas. Future studies recruiting adults living in the most deprived areas might benefit from community recruitment and from collaborating with local gatekeepers who are key to engagement.

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Recruitment And Retention Of Participants From Socioeconomically Deprived Communities: Lessons From The Awareness And Beliefs About Cancer (ABACus3) Randomised Controlled Trial.

10.21203/rs.3.rs-33953/v3 ◽

2020 ◽

Author(s):

Vasiliki Kolovou ◽

Yvonne Moriarty ◽

Stephanie Gilbert ◽

Harriet Quinn-Scoggins ◽

Julia Townson ◽

...

Keyword(s):

Financial Incentives ◽

Controlled Trial ◽

Qualitative Interviews ◽

Randomised Control Trial ◽

Trial Participant ◽

Community Settings ◽

Research Strategies ◽

Healthcare Settings ◽

Randomised Controlled ◽

Deprived Areas

Abstract Background: Recruitment of research participants poses challenges in socioeconomically deprived areas. The Awareness and Beliefs About Cancer (ABACus) phase 3 Randomised Control Trial recruited adult participants from socioeconomically deprived areas using a combined healthcare/community engagement model. We report the strategies used to successfully recruit and retain our trial participant sample.Methods: Community and healthcare settings in areas of high socioeconomic deprivation were identified by lay advisors who recruited participants opportunistically or by appointment. Follow-up was done by telephone or post at 2-weeks and 6-months after recruitment, and all participants were offered financial incentives. Qualitative interviews were conducted with lay advisors regarding their experience and reflections.Results: The lay advisors identified and contacted 107 potential recruitment venues across South and West Yorkshire and South East Wales of which 41.1% (n= 42) were opened for recruitment. A total of 234 participants were recruited, with 91% (n= 212) retention at 2-weeks and 85% (n= 199) at 6-months. Community settings yielded 75% (n= 176) of participants. Participants had a mean age of 61.3 years and 63.3% (n= 148) were female, with 66% (n= 154) resident in the most deprived geographical areas. Lay advisors described recruitment as intensive, although engaging participants was easier in community settings.Conclusions: The ABACus3 trial achieved recruitment and high retention with a population that is often “hard to reach” or entirely missed in health research. Strategies were specifically tailored to engage the venues and adult residents of highly deprived areas. Future studies recruiting adults living in the most deprived areas might benefit from community recruitment and from collaborating with local gatekeepers who are key to engagement.This study adheres to CONSORT guidelines.Trial Registration: Retrospectively registered with ISRCTN (http://www.isrctn.com/ISRCTN16872545) on 12.01.2018.

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Recruitment of Healthcare Providers into Research Studies

Canadian Journal of Nursing Research ◽

10.1177/0844562120974911 ◽

2021 ◽

pp. 084456212097491

Author(s):

Jill Bruneau ◽

Donna Moralejo ◽

Catherine Donovan ◽

Karen Parsons

Keyword(s):

Nurse Practitioners ◽

Controlled Trial ◽

Healthcare Providers ◽

Lessons Learned ◽

Recruitment Process ◽

High Quality Research ◽

Building Relationships ◽

Face To Face ◽

Successful Recruitment ◽

Research Studies

Recruitment of a sufficient number of healthcare providers (HCPs), such as nurses and nurse practitioners (NPs), as participants is essential to generate high quality research to address issues significant for clinical practice. Often the recruitment process reported in research studies is very brief and does not capture the reality of the challenges of obtaining an adequate sample. This manuscript describes the challenges that we experienced in trying to recruit a sufficient number of HCPs, specifically NPs, into a randomized controlled trial. Based on our experience, as well as a review of the literature on recruiting HCPs, we share recommendations for researchers trying to recruit busy professionals as participants. Key findings were not just about reaching the target participants, but actually using strategies to stimulate their interest and persuading them to be involved from the beginning. Important things to consider for successful recruitment are making an effort to meet with professionals face-to-face and building relationships with administrators and other staff within organizations. Other lessons learned were to ensure to allot extra time for recruitment to allow for unanticipated challenges and to utilize multimodal strategies simultaneously to ensure a more timely execution of the recruitment process.

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Recruitment And Retention Of Participants From Socioeconomically Deprived Communities: Lessons From The Awareness And Beliefs About Cancer (ABACus3) Randomised Controlled Trial.

10.21203/rs.3.rs-33953/v2 ◽

2020 ◽

Author(s):

Vasiliki Kolovou ◽

Yvonne Moriarty ◽

Stephanie Gilbert ◽

Harriet Quinn-Scoggins ◽

Julia Townson ◽

...

Keyword(s):

Financial Incentives ◽

Controlled Trial ◽

Qualitative Interviews ◽

Randomised Control Trial ◽

Trial Participant ◽

Community Settings ◽

Research Strategies ◽

Healthcare Settings ◽

Randomised Controlled ◽

Deprived Areas

Abstract Background: Recruitment of research participants poses challenges in socioeconomically deprived areas. The Awareness and Beliefs About Cancer (ABACus) phase 3 Randomised Control Trial recruited adult participants from socioeconomically deprived areas using a combined healthcare/community engagement model. We report the strategies used to successfully recruit and retain our trial participant sample.Methods: Community and healthcare settings in areas of high socioeconomic deprivation were identified by lay advisors who recruited participants opportunistically or by appointment. Follow-up was done by telephone or post at 2-weeks and 6-months after recruitment, and all participants were offered financial incentives. Qualitative interviews were conducted with lay advisors regarding their experience and reflections.Results: The lay advisors identified and contacted 107 potential recruitment venues across South and West Yorkshire and South East Wales of which 41.1% (n= 42) were opened for recruitment. A total of 234 participants were recruited, with 91% (n= 212) retention at 2-weeks and 85% (n= 199) at 6-months. Community settings yielded 75% (n= 176) of participants. Participants had a mean age of 61.3 years and 63.3% (n= 148) were female, with 66% (n= 154) resident in the most deprived geographical areas. Lay advisors described recruitment as intensive, although engaging participants was easier in community settings.Conclusions: The ABACus3 trial achieved recruitment and high retention with a population that is often “hard to reach” or entirely missed in health research. Strategies were specifically tailored to engage the venues and adult residents of highly deprived areas. Future studies recruiting adults living in the most deprived areas might benefit from community recruitment and from collaborating with local gatekeepers who are key to engagement.This study adheres to CONSORT guidelines.Trial RegistrationRetrospectively registered with ISRCTN (http://www.isrctn.com/ISRCTN16872545) on 12.01.2018.

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Recruitment and retention of participants from socioeconomically deprived communities: lessons from the Awareness and Beliefs About Cancer (ABACus3) Randomised Controlled Trial

BMC Medical Research Methodology ◽

10.1186/s12874-020-01149-x ◽

2020 ◽

Vol 20 (1) ◽

Author(s):

Vasiliki Kolovou ◽

Yvonne Moriarty ◽

Stephanie Gilbert ◽

Harriet Quinn-Scoggins ◽

Julia Townson ◽

...

Keyword(s):

Financial Incentives ◽

Controlled Trial ◽

Qualitative Interviews ◽

Randomised Control Trial ◽

Trial Participant ◽

Community Settings ◽

Research Strategies ◽

Healthcare Settings ◽

Randomised Controlled ◽

Deprived Areas

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Financial Incentives for Home-Based Health Monitoring: A Randomized Controlled Trial

Journal of General Internal Medicine ◽

10.1007/s11606-014-2778-0 ◽

2014 ◽

Vol 29 (5) ◽

pp. 770-777 ◽

Cited By ~ 44

Author(s):

Aditi P. Sen ◽

Taylor B. Sewell ◽

E. Brooks Riley ◽

Beth Stearman ◽

Scarlett L. Bellamy ◽

...

Keyword(s):

Randomized Controlled Trial ◽

Health Monitoring ◽

Financial Incentives ◽

Controlled Trial ◽

Randomized Controlled ◽

Home Based

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Implementing advance care planning in dementia care: results and insights from a pilot interventional trial

10.21203/rs.3.rs-383522/v1 ◽

2021 ◽

Author(s):

Francesca Bosisio ◽

Anca Sterie ◽

Eve Rubli Truchard ◽

Ralf J. Jox

Keyword(s):

Advance Care Planning ◽

Perceived Control ◽

Controlled Trial ◽

Qualitative Interviews ◽

Healthcare Providers ◽

Depression Scale ◽

Decisional Conflict ◽

Dementia Care ◽

Care Planning ◽

Advance Care

Abstract Background: Advance care planning (ACP) is particularly appropriate for persons with dementia (PWD) since it fosters conversation about dementia-specific illness scenarios, addresses inconsistencies between advance directives and patients’ observed behaviour, emphasises prospective and relational autonomy, and may be generally consistent to elderly’s decision-making needs. However, despite the evidence of its benefits, ACP is yet to become widely used among PWD. In this paper, we present results regarding the feasibility and acceptability of a pilot intervention designed to foster ACP among PWD and their relative and explore future outcome measures in prevision of a randomized controlled trial. Methods: In order to assess pre-post variations, we used qualitative interviews and four psychometric scales: Hospital Anxiety and Depression Scale, Questionnaire of Psychological Autonomy, Decisional conflict scale, and Zarit burden scale. We added two visual analog scales for perceived control over and perceived involvement in healthcare decisions, as well as two hypothetic scenarios to test concordance between PWD’s and surrogate’s decisions.Results: Five main challenges in terms of feasibility were 1) to locate eligible patients, 2) to tailor recruitment procedures to recruitment locations, 3) to adapt inclusion criteria to meet clinical routines, 4) to engage PWD and their relatives in ACP, and 5) to choose outcome criteria that do not burden PWD. Alongside with those expected challenges, we discuss substantial unanticipated gatekeeping by the research ethics committee and healthcare professionals. Despite the setbacks, the intervention was well received by PWD and their relatives that expressed satisfaction with the procedure, especially in regard to the opportunity to discuss a sensitive topic with the help of a facilitator. Relatives’ perceived control over healthcare decisions increased, as well as concordance between PWD’s preferences and relatives’ decision. Conclusion: Misconceptions about dementia and ACP, both in the patient, relatives, and healthcare providers, combined with structural institutional challenges, have the power to impede research and implementation of ACP in dementia care. For this reason, we advocate for a systemic approach of ACP and for the use of ACP tools and research adapted to PWD cognitive capacities.Trial registration: This trial was registered in the database clinicaltrial.gov with the number NCT03615027

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Patients with heart failure with preserved ejection fraction and their caregiver’s experiences of home-based rehabilitation (REACH-HFpEF): mixed methods process evaluation of the REACH-HFpEF single centre pilot randomised controlled trial.

10.21203/rs.3.rs-17265/v1 ◽

2020 ◽

Author(s):

Karen Smith ◽

Chim Lang ◽

Jenny Wingham ◽

Julia Frost ◽

Colin Greaves ◽

...

Keyword(s):

Heart Failure ◽

Process Evaluation ◽

Controlled Trial ◽

Qualitative Interviews ◽

Intervention Fidelity ◽

Preserved Ejection Fraction ◽

Single Centre ◽

Pilot Randomised Controlled Trial ◽

Home Based ◽

Randomised Controlled

Abstract Background: Whilst heart failure (HF) with preserved ejection fraction (HFpEF) affects almost 50 percent of the HF population, evidence-based treatment options remain limited. However, there is emerging evidence of the potential value of exercise-based cardiac rehabilitation. This study reports the process evaluation conducted as part of the REACH-HFpEF trial. Methods: Mixed methods process evaluation parallel to a single centre (Tayside, Scotland) pilot randomised controlled trial with quantitative assessment of intervention fidelity and a qualitative exploration of HFpEF patients’ and caregivers’ experiences. The Rehabilitation EnAblement in Chronic Heart Failure (REACH-HF) intervention consisted of self-help manual for patients and caregivers, facilitated over 12 weeks by trained healthcare professionals. Data included audio-recorded intervention sessions; demographic information; intervention fidelity scores; and qualitative interviews conducted following completion of intervention in a purposeful sample of 15 HFpEF patients and 7 caregivers, Results: Intervention fidelity analysis was indicative of the adequate delivery of the majority of the REACH-HF components, with three items relating caregiver involvement (addressing emotional consequences of being a caregiver, caregiver health and well-being, and closure of the session) scoring poorly. Qualitative interviews identified three key themes for patients and caregivers: (1) understanding their condition, (2) emotional consequences of HF, and (3) patients’ and caregivers’ responses to the REACH-HF intervention were uncovered by qualitative interviews. Conclusions: The REACH-HF home-based facilitated intervention for HFpEF appears feasible and well accepted model for delivery of a CR intervention, with the potential to address key unmet needs of patients and their caregivers who are often excluded from service provision and current CR programmes. Results inform a future full multicentre randomised clinical trial.

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