Healing relationships between patients from visible minority groups and their clinicians in palliative care: Protocol for an interpretive description study

Abstract

Background:

Palliative care supports human dignity across the trajectory of a serious illness. In addition to addressing multiple dimensions of suffering among patients, palliative care aims to foster healing—a relational process through which one experiences personal growth and transcendence. Palliative care clinicians build relationships with patients through communication practices that enhance trust and other relational elements. These relationships hold the potential to mitigate patient suffering. However, patients from visible minority groups may face structural barriers and clinician biases that impede the formation of healing-oriented relationships. We know little about their experiences of relationships in this setting.

Objectives:

To examine the qualities of healing clinician–patient relationships from the perspective of visible minority patients receiving outpatient palliative care.

Design:

Interpretive description.

Methods and analysis:

We will recruit 10–15 patients who identify themselves as being part of a visible minority group and have had at least two outpatient palliative care visits. We will conduct semi-structured in-depth individual interviews and analyze these based on deductive-inductive thematic analysis initially grounded in current evidence. We will identify relational elements that patients value and that promote positive connections with clinicians. We will produce a rich description of “healing” and understand the role of relationships in healing.

Ethics:

We have obtained institutional ethics board approval to conduct this study.

Discussion:

Relationships may alleviate patient suffering and promote healing even in settings of serious illness. Clinicians should attend to nurturing meaningful relationships with patients from visible minority groups who face additional challenges beyond those brought by a serious illness. Our findings may inform clinical training programs that promote relationship-building behaviors. Efforts to promote higher quality relationships with these patient groups may improve their overall quality of care and address inequities in palliative care.

Introduction

Visible minority groups in Canada, and globally, experience inequities in serious illness care and other areas of healthcare due to systemic biases based on culture, ethnicity, race, and other social determinants of health.^1,2 Patients report differential treatment and discriminatory behaviors based on these factors, which they perceive to negatively impact clinician communication and service quality.^3–7 They may also find it more challenging to connect with their healthcare providers, which could discourage them from seeking healthcare services. People from visible minority groups utilize hospital and hospice care services at lower rates than those from non-racialized communities.^8,9 Differences in knowledge and cultural beliefs may contribute to these disparities in the use of serious illness care, including palliative care. ⁸ Addressing systemic biases that can arise during interactions with the healthcare system may help mitigate care inequities.

Patients, caregivers, and healthcare providers recognize the significance of relationships in healthcare and, in particular, serious illness care.^10,11 Patients and caregivers describe a sense of emotional comfort when their relationships with clinicians consist of therapeutic interpersonal interactions. ¹² Clinicians also find these to be “rewarding, inspiring, and humbling.” ¹³ Relationships become particularly important during serious illness care^14–16 as patients experience multiple forms of suffering that threaten their sense of integrity.^17–19 Clinician–patient relationships contribute to the potential for patients to experience a sense of personal growth, what some have referred to in the setting of serious illness as “healing.” ¹⁸ Promoting healing by improving relationship quality may have implications for delivering culturally safe care and reducing differences in care quality. This, in turn, can foster patients’ care seeking and trust in their doctors, ⁵ and overall satisfaction with care.^20–22 Improving the quality of clinician–patient relationships in serious illness care may therefore reduce disparities in care quality for visible minority groups and potentially address broader health inequities.

Despite the importance of clinician–patient relationships for promoting positive health outcomes and for addressing inequities in serious illness care, we lack understanding of the characteristics that foster healing relationships among patients from visible minority groups. We know that therapeutic relationships in various healthcare settings are characterized by respect, empathy, and mutual understanding.^23–25 However, we know little of the visible minority perspective on what constitutes high-quality relationships in the settings in which people receive serious illness care and where relationships may hold heightened importance. ²⁶ Accordingly, we will explore the experiences of patients from visible minority groups with respect to their clinical relationships and their understanding of healing in the context of serious illness. This study will be guided by the following research question: What are the qualities of healing clinician–patient relationships from the perspective of individuals from visible minority groups receiving outpatient palliative care?

Methods

Methodology

This study will adopt interpretive description as a qualitative approach to studying healing relationships from the perspective of patients from visible minority groups.^27,28 This methodology generates a comprehensive interpretation of experiential clinical phenomena,^27,28 such as healing in the context of serious illness. We will employ this methodology to capture and interpret patterns within the personal and subjective experience of healing as well as potentially relevant variations that may emerge across patient narratives.^27,28 The reporting of this protocol conforms to the Observational and Qualitative Study Protocol Reporting Checklist (Supplemental Material 1). ²⁹

Sample and recruitment

Adopting a purposive sampling approach, we will recruit eligible patients through three institutions offering palliative care services in Canada. Key informants are those who (1) identify as being part of a visible minority group according to The Employment Equity Act, ³⁰ (2) have had at least two outpatient palliative care visits at McGill University Health Centre in Québec or who have seen palliative care clinicians affiliated with Bruyère Health Research Institute or Inner City Health Associates in Ontario, (3) are at least 18 years old, and (4) speak English or French. Recruitment flyers will either be posted in waiting rooms of outpatients’ clinics or distributed by clinicians to their patients and/or other clinicians who may see eligible patients. We anticipate including 10–15 participants in this study.

Data collection

We will conduct 45–60 minute semi-structured in-depth interviews with participants at their preferred location (virtually by Zoom or in-person if in Montréal). Participants will be able to choose if they prefer having a caregiver with them during their interview. We developed an interview guide to ask participants about their experience of relationships with their palliative care providers and what healing means and feels like to them in the context of these relationships (Supplemental Material 2).

Data analysis

We will transcribe audio-recorded interviews and analyze these using a hybrid deductive-inductive approach to thematic analysis.^31,32 We created a “theory-driven” coding scheme ³³ using our interview guide, which reflects our knowledge based on current literature within palliative care.^{18,23,34–48} We will apply principles of hybrid thematic analysis ³¹ and constant comparative analysis to continuously update our codebook based on new insights from the data.^27,49,50

Before initial coding of the data, we will ensure in-depth familiarization with the interview transcripts to prioritize theorizing and contextualizing over sorting of the data. ²⁸ Our analysis will reflect the contextual nature of the data by continuously moving “in and out of the detail.”^27,28 We will iteratively discuss coding schemes to enable ongoing and flexible reconstruction of themes and to critically draw broader connections between data segments. ⁵¹ After initial coding, we will first identify broad characteristics that participants find significant and meaningful for their relationships. We will then discuss similarities and differences in the data to characterize healing in the context of these relationships. ²⁸ We will examine groups of data comprising similar characteristics and consider alternative ways of broadening conceptual linkages between them, as suggested by the methodological framework. ²⁷ We will identify themes within the latent content of the data to construct a meaningful and coherent interpretive account of patients’ experiential knowledge. ²⁷ Iterations of these themes will be continuously reviewed and discussed by members of our research team to ensure an accurate and holistic representation of the data.

We will adopt strategies informed by interpretive description for ensuring rigor.^27,51 In addition to regular debriefing meetings during data collection and analysis, we will create reflexive memos at each stage of analysis to document our analytic decisions and reasoning processes.^51,52 We will also use these ongoing memos to ensure our analysis is grounded within the data.^27,28

Discussion

Summary

This study aims to explore the qualities of healing clinician–patient relationships from the perspective of patients from racialized groups who are seen in the context of serious illness care. Specifically, we will invite patients from visible minority groups to share their experience of clinical relationships in outpatient palliative care. We will describe healing from their perspective and the role of clinician–patient relationships in healing. We will document the relational elements of care that foster meaningful connections and that support patients’ journey toward healing.

Implications

By identifying patient-informed elements of clinical encounters that foster healing, our study has the potential to improve the quality of clinical relationships and care for all patients affected by serious illness. This study may drive evidence for training programs centered on fostering relationship-building behaviors that patients facing multiple vulnerabilities value and that promote their sense of healing. This study may also inform future participatory research activities to co-create meaningful strategies that help clinicians build healing relationships with their patients. The findings of this study can lead to initiatives that improve clinical relationships, which may address inequities in palliative care and other clinical settings. Finally, this study may contribute to our theoretical understanding of relationship formation in the setting of sociocultural vulnerability, with attendant impact on further research in patient–provider communication.

Limitations

The study data should be interpreted in light of anticipated limitations. Race and ethnicity (from which visible minority status derives) are among many intersecting factors that impact access to and quality of healthcare. Our focus on visible minorities as the salient factor in our interviews risks failing to capture other aspects of identity, and other potential sources of marginalization, that may more significantly impact people’s experiences and relationships with clinicians. However, research into the experience of patients from visible minority groups remains in its nascency in Canada despite its significant ethno-racial diversity. The proposed sample size of our study may not support the identification of relationship qualities that reflect the experiences of all visible minority groups. Given the scope of this study and the challenges of recruiting participants, we determined that a smaller sample size would promote the feasibility of completing this study and help us produce contextual knowledge that could be pertinent for future research. To ensure that we include a diverse range of visible minority groups, we will concurrently collect and analyze interview data. Ultimately, our findings will be hypothesis-generating.

Conclusion

This study will characterize the qualities of healing-oriented clinician–patient relationships from the perspective of ambulatory palliative care patients who identify as being part of a visible minority group. The findings of this study may help researchers and clinicians co-create educational tools that foster relationship-building behaviors with patients from communities that have been historically marginalized. Implementation of such tools or other patient-informed training programs in serious illness care can promote higher quality clinician–patient relationships and potentially reduce disparities in care quality.