From: Palliative care research utilising intersectionality: a scoping review
Author & year of publication | Minoritised groups centred | Categories of identity, oppression (&/or privilege) | Methodology identifies & clarifies category implicit statements | Intersectionality in all aspects of study | Recognises identity complexity | Power analysis | Articulates social justice aims | Reflexive activity |
---|---|---|---|---|---|---|---|---|
Baskaran & Hauser (2022) [50] | People who identify as LGBQTI + | Group highly intersectional including LGBQTI + , gender, socio-economic status (SES), religion, culture, environment | Not articulated | Only identified as a theme in findings | Participants identified their various marginalised identities as simultaneously oppressive. Recognised reductionist interventions don’t validate individual & group needs related to their “complex intersectionality” (p. 7) | Not identified | Urged discrimination & inequity to be seen as symptoms of social & structural injustice. Palliative care embodies, “whole person” & hospice care. Opportunity to palliate symptoms of inequity | Not identified |
Dworzanowski-Venter, B. (2017) [51] | South African black male caregivers | Class, race, professional status, gender norm, SES | To understand lived experience of black male caregivers. Recognised socially created separation in gender norms related to work | Integrated in theory framework research question, design, analysis & findings | Linked colonisation to understanding of masculinity. Recognised dominant masculinity hegemony is based on a values status of professional work & associated financial prowess. Sees conflict between abstract of masculinity & reality | Dynamic nature of intersectionality which connects structured oppression & marginalization. An increase in status of one identity does not neutralize oppression in other identities | Recognised revolutionary potential—real change only possible when intersecting oppressions are unmasked & challenged | In background & rationale. Identified all self-knowledge is shaped by contextual location. Reflexivity alone cannot ameliorate white privilege. Asks if white feminist authors be sufficiently disruptive |
Giesbrecht et al. (2012) [52] | Female family caregivers | Emerged in coding & analysis. Included culture, gender, geography, life course stage, material resources | Compassionate Care Benefit (CCB) is an attempt to lessen family caregiver burden – limited uptake. Diversity is often ignored in health policy & patterns of inequity are not recognised | Part of a larger study, so not an original objective. Not included in research question (focus on diversity). Used critical diversity analysis informed by intersectionality | Conveyed women are not a homogenous group. This leads to a variety of caregiving experiences (including diversity in vulnerability & inequity). Caregiving results in gendered inequity & overlap with other social location factors | Considered simultaneous interactions between different aspects of social identity, as well as the impact of systems & processes of oppression & domination | Identified CCB is not working for some. Explored the differing social/physical locations which informed the under-utilization of the benefit. Intersectionality theory a foundation for pursuit of social justice & addressing inequity | Not articulated |
Giesbrecht et al. (2018) [53] | People who experience structural vulnerability | Race/ethnicity, SES, mental health issues, disability | Accepted all people at the end-of-life experience vulnerability, this is significantly amplified for people who also experience structural vulnerability | Applied in analysis to understand how differing lived experiences shape access to care for structurally vulnerable populations | Concerned with simultaneous interactions between aspects of social difference & identity | Systemic forms of oppression (e.g., racism & ableism) interact in complex ways; includes equitable distribution of resources | To inform those in power ways of directly impacting policy, practice, & system change for equitable access to palliative care for most vulnerable population groups | Not discussed |
Giesbrecht et al. (2015) [54] | Palliative family caregivers | Social networks, education, employment status, geographic location of residence, housing status, life course stage | Used case studies to show the unique lived experience of palliative family caregivers. Identified that the multiple variables connected & interacted in specific contexts as important | Secondary analysis from a larger study—not an original objective. Utilised as a lens to identify aspects of socio- environmental context | Acknowledged human lives can’t be reduced to a singular category/social location. Real lived experience is more complex. Family caregiver resilience, stress, burden & burnout is shaped by socio-environmental factors & experienced differently within this group | Explored concurrent interactions of unitary categories & social locations. The combined impacts of multiple social locations & structural processes create & perpetuate health inequities | Not explicit—provided commentary about heterogeneity (including socio-environmental aspects) for this group means nurses can enhance family caregivers’ individual capacities to be resilient & identify vulnerability | Not articulated |
Hutson (2016) [55] | People diagnosed with HIV/AIDS | HIV/AIDS diagnosis, sexual orientation, location of residence, religion, ethnicity | Not articulated | Only identified in findings | Participants intersecting identities seen as sources of stigma, discrimination & oppression. Often leads to social isolation. Author found difficulty identifying stigma relating to singular identity or characteristic e.g. if related to disease/sexuality/ethnicity | Not undertaken | Recognised importance for healthcare providers to understand pervasive nature of stigma & how this impacts on advance care planning & end-of-life care | Not discussed |
Liu et al. (2020) [56] | Caregivers for people diagnosed with dementia | Caregiving, gender, race, ethnicity & other socio-demographic factors | To examine the dementia caregiving burden related to multiple ascribed identities & the multidimensionality of caregiving burdens | Integrated in research question, methodology, analysis & discussion | Multidimensional burdens for dementia caregivers aren’t experienced evenly by gender or by racial/ethnic groups. Influenced by differing experiences, interpretation of stressors & coping mechanisms | Identified intersectionality provides opportunity to assess the inter-connections relevant to use of power. Did not undertake power analysis within study | General statements made about need for policy change to reflect & address current inequities | Not articulated |
Stajduhar et al. (2019) [57] | People who experience structural vulnerability | Group defined as highly intersectional | Barriers to palliative care likely amplified for people who are structurally vulnerable. Positionality for structurally vulnerable changes in response to external forces (e.g. policy reform) | In definition of structural vulnerability & analysis to explore the complex, concurrent & interdependent interactions between types of social difference & identity | Whilst living in poverty, people may also experience homelessness & racism, trauma, violence, social isolation, stigma related to mental health, cognitive impairment, substance use, behavioural & mobility issues, interactions with criminal-justice system &/or disability | Explored complex, simultaneous & interdependent interaction between types of social difference, identity & forms of systemic oppression (e.g. sexism, racism, ableism) at micro & macro scales | Critical theoretical perspectives of equity & social justice utilised | Engaged in reflexivity during the observations by research staff within the field notes, which included their thoughts about the observation itself, possible influences impacting on the observation & anything of note for future observations |
Suntai et al. (2023) [58] | Black American People, women | Race & gender | Considers how race & gender interact to impact on quality of end of life care | Used as theoretical framework underpinning study. Analyses aimed to see intersectional effects | Recognised identity complexity in background. Considered income, post-secondary education in analyses. Not reflected on in discussion | Not identified | Found interpersonal discrimination as a factor in findings. Considered changes in healthcare that are needed – not explicit re social justice aims | Not discussed |
Wilson et al. (2018) [59] | People who identify as LGB | Age, gender identity, sexual orientation | Not articulated within methodology | Issues of intersectionality articulated in abstract & discussion | Recognised significant heterogeneity in ageing people. Age, gender identity & sexual orientation seen as non-modifiable determinants. Emphasised need for the intersections of these identities to be further understood | Not identified | Understanding intersectionality is crucial to facilitate inclusive health systems that support positive aging experiences & good end-of-life care | Not discussed |