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

Article indépendant

CARDENAS, Valeria | RAHMAN, Anna | GIULIONI, Jenna | COULOURIDES KOGAN, Alexis | ENGUIDANOS, Susan

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.

http://dx.doi.org/10.1186/s12904-021-00856-6

Voir la revue «BMC palliative care, 20»

Autres numéros de la revue «BMC palliative care»

Consulter en ligne

Suggestions

Du même auteur

Home-based palliative care organizations stru...

Article | RAHMAN, Anna | The American journal of hospice and palliative care | n°11 | vol.39

Background: New opportunities to expand home-based palliative care (HBPC) highlight the need for novel data that explores how HBPC providers currently navigate this nascent business. Objectives: To investigate how HBPC providers a...

Home-based palliative care organizations stru...

Article indépendant | RAHMAN, Anna | The American journal of hospice and palliative care | n°11 | vol.39

Background: New opportunities to expand home-based palliative care (HBPC) highlight the need for novel data that explores how HBPC providers currently navigate this nascent business. Objectives: To investigate how HBPC providers a...

Home-based palliative care organizations stru...

Article indépendant | RAHMAN, Anna | The American journal of hospice and palliative care | n°11 | vol.39

Background: New opportunities to expand home-based palliative care (HBPC) highlight the need for novel data that explores how HBPC providers currently navigate this nascent business. Objectives: To investigate how HBPC providers a...

De la même série

Translation, cross-cultural adaptation and va...

Article indépendant | XIE, Zhishan | BMC palliative care | n°1 | vol.24

INTRODUCTION: People diagnosed with cancer are the most frequent users of palliative care. However, there are no specific standards for early identifying patients with palliative care needs in mainland China. The Supportive and Pa...

Validation of the advance care planning engag...

Article indépendant | TAN, Gwendoline Wan Hua | BMC palliative care | n°1 | vol.24

BACKGROUND: Singapore has an ageing population. End-of-life care and advance care planning are becoming increasingly important. To assess advance care planning engagement, valid tools are required. The primary objective of the stu...

A relational approach to co-create advance ca...

Article indépendant | PHENWAN, Tharin | BMC palliative care | n°1 | vol.24

BACKGROUND: Discussing Advance Care Planning (ACP) with people living with dementia (PwD) is challenging due to topic sensitivity, fluctuating mental capacity and symptom of forgetfulness. Given communication difficulties, the pre...

Learning from experience : does providing end...

Article indépendant | MEIER, Clément | BMC palliative care | n°1 | vol.24

BACKGROUND: Despite the critical role of health literacy in utilizing palliative care and engaging in advance care planning, limited research exists on the determinants of end-of-life health literacy. This study investigates the a...

A study protocol for individualized prognosti...

Article indépendant | VAN DEN BESSELAAR, Boyd Noël | BMC palliative care | n°1 | vol.24

BACKGROUND: Head and neck squamous cell cancer (HNSCC) has a poor prognosis, with approximately 25-30% of patients transitioning into the palliative phase at some point. The length of this phase is relatively short, with a median ...

Chargement des enrichissements...