ABSTRACT
BACKGROUND: Cultural factors, including religious or cultural beliefs, shape patients' death and dying experiences, including palliative and end-of-life (EOL) care preferences. Allied health providers must understand their patients' cultural preferences to support them in palliative and EOL care effectively. Cultural humility is a practice which requires allied health providers to evaluate their own values, biases, and assumptions and be open to learning from others, which may enhance cross-cultural interactions by allowing providers to understand patients' perceptions of and preferences for their health, illness, and dying. However, there is limited knowledge of how allied health providers apply cultural humility in palliative and EOL care within a Canadian context. Thus, this study describes Canadian allied health providers' perspectives of cultural humility practice in palliative and EOL care settings, including how they understand the concept and practice of cultural humility, and navigate relationships with patients who are palliative or at EOL and from diverse cultural backgrounds. METHODS: In this qualitative interpretive description study, remote interviews were conducted with allied health providers who currently or recently practiced in a Canadian palliative or EOL care setting. Interviews were audio-recorded, transcribed, and analyzed using interpretive descriptive analysis techniques. RESULTS: Eleven allied health providers from the following disciplines participated: speech-language pathology, occupational therapy, physiotherapy, and dietetics. Three themes were identified: (1) Interpreting and understanding of cultural humility in palliative and EOL care (i.e., recognizing positionality, biases and preconceived notions and learning from patients); (2) Values, conflicts, and ethical uncertainties when practicing cultural humility at EOL between provider and patient and family, and within the team and constraints/biases within the system preventing culturally humble practices; (3) The 'how to' of cultural humility in palliative and EOL care (i.e., ethical decision-making in palliative and EOL care, complexities within the care team, and conflicts and challenges due to contextual/system-level factors). CONCLUSIONS: Allied health providers used various strategies to manage relationships with patients and practice cultural humility, including intra- and inter-personal strategies, and contextual/health systems enablers. Conflicts and challenges they encountered related to cultural humility practices may be addressed through relational or health system strategies, including professional development and decision-making support.
Subject(s)
Occupational Therapy , Terminal Care , Humans , Canada , Culture , Patient PreferenceABSTRACT
BACKGROUND: Stroke service disparities experienced by individuals of African descent highlight the need to optimize services. While qualitative studies have explored participants' unique experiences and service needs, a comprehensive synthesis is lacking. To address current knowledge gaps, this review aimed to synthesize existing literature on the experiences of individuals of African descent impacted by a stroke living in high-income economy countries in terms of stroke prevention, management, and care. METHODS: A qualitative meta-synthesis incorporating a meta-study approach was conducted to obtain comprehensive and interpretive insights on the study topic. Four databases were searched to identify qualitative English-language studies published in the year 2022 or earlier on the experiences of adults of African descent who were at risk or impacted by a stroke and living in high-income economy countries. Study methods, theory, and data were analyzed using descriptive and interpretive analyses. RESULTS: Thirty-seven studies met our inclusion criteria, including 29 journal articles and 8 dissertations. Multiple authors reported recruitment as a key challenge in study conduct. Multiple existing theories and frameworks of health behaviours, beliefs, self-efficacy, race, and family structure informed research positionality, questions, and analysis across studies. Participant experiences were categorized as (1) engagement in stroke prevention activities and responses to stroke symptoms, (2) self-management and self-identity after stroke, and (3) stroke care experiences. CONCLUSIONS: This study synthesizes the experiences and needs of individuals of African descent impacted by stroke. Findings can help tailor stroke interventions across the stroke care continuum, as they suggest the need for intersectional and culturally humble care approaches.
ABSTRACT
Purpose: The purpose of this qualitative study is to understand, from the patient's perspective, their experience of living with advanced multiple myeloma, the psychosocial impact, and needs for support in managing and adapting to this illness. Methods: An interpretive descriptive approach was used. Individual semi-structured telephone interviews were conducted with each participant, which focused on eliciting their descriptions of psychosocial issues and concerns, as well as the supports they use for coping with cancer. Transcripts were analyzed using interpretive description, resulting in the generation of common themes that represented the data. Results: The sample comprised twelve adults with a diagnosis of advanced multiple myeloma who had undergone at least three lines of treatment or were transfusion dependent. All participants were receiving ambulatory care for their myeloma in Toronto, Ontario, Canada. Four themes were generated: (1) confusion about the diagnosis and treatment options; (2) challenges in finding relevant information; (3) dealing with the chronicity of treatment side effects; (4) social support as critical for coping with the life-threat of multiple myeloma. Conclusion: Findings suggest that the psychosocial impact of living with advanced multiple myeloma is greatly impacted by one's ability to understand the complexities of the diagnosis and access supports to cope with its physical and emotional consequences. Clinical interventions specifically tailored to meeting the information and support needs of this population are needed.
