Values That Are the Foundation of This Quality Standard
This quality standard was created, and should be implemented, according to the Patient, Family and Caregiver Declaration of Values for Ontario. This declaration “is a vision that articulates a path toward patient partnership across the health care system in Ontario. It describes a set of foundational principles that are considered from the perspective of Ontario patients and serves as a guidance document for those involved in our health care system.”
These values are:
Respect and dignity
Empathy and compassion
Equity and engagement
A quality health system is one that provides good access, experience, and outcomes for all people in Ontario, no matter where they live, what condition they have, or who they are.
In addition to the above values, this quality standard is guided by the principles outlined below.
Acknowledging the Impact of Colonization and Racism
Health care providers should acknowledge and work toward addressing the historical and present-day impacts of colonization and racism in the context of the lives of Black people, Indigenous people, and racialized people throughout Canada. This work involves being sensitive to the impacts of intergenerational and present-day traumas and the physical, mental, emotional, and social harms experienced by Black people, Indigenous people, racialized people, families, and communities, as well as recognizing their strength and resilience. This quality standard uses existing clinical practice guideline sources that may not include culturally relevant care or acknowledge the traditional beliefs, practices, and models of care relevant to Black people, Indigenous people, and racialized people.
French Language Services
In Ontario, the French Language Services Act guarantees an individual's right to receive services in French from Government of Ontario ministries and agencies in 26 designated areas and at government head offices.
People with sickle cell disease should receive care through an integrated approach that facilitates access to interprofessional services from multiple health care providers from different professional backgrounds and across health care settings to provide comprehensive services. Health care providers should work with patients, their families and caregivers, and communities to deliver the highest quality of care across settings. Interprofessional collaboration, shared decision-making, coordination of care, and continuity of care (including follow-up care) are hallmarks of this patient-centred approach.
Intersectionality refers to the differences in experiences with discrimination and injustice that people have based on social categorizations such as race/ethnicity, class, age, and gender, and the interaction of these experiences with compounding power structures (e.g., media, education system). These interconnected categorizations create overlapping and interdependent systems of discrimination or disadvantage. For example, the stigma experienced by people with sickle cell disease can vary depending on clinical and demographic characteristics such as racial/ethnic background and age, as well as other characteristics such as language barriers or perceived socioeconomic status. Understanding how the various aspects of people’s identities intersect can provide insight into the complexities of the processes that cause health inequities and an understanding of how different people experience stigma and discrimination.
Racism and Anti-Black Racism
Racism and anti-Black racism refer to the systemic discrimination that harms racialized populations and groups living with health-related social needs and creates barriers to and disparities in accessing and receiving appropriate health care and community and social services. This type of racism often involves labelling, devaluation, judgment, and/or the social disqualification of a person based on their health condition, leading to negative health outcomes. Anti-Black racism is associated with policies and practices rooted in Canadian institutions such as the education, health care, social, and justice systems that mirror and reinforce beliefs, attitudes, prejudices, stereotyping, and discrimination toward people of African descent. Racism and anti-Black racism can have negative effects on a person’s health such as triggering stress-coping behaviours (e.g., smoking). The traumatic impact of racism and anti-Black racism can also lead to the development of additional health issues (e.g., depression, anxiety). Frequent experiences of discrimination have also been associated with obesity and lower self-rated health. Racism, particularly anti-Black racism, is the most significant source of stigma experienced by people with sickle cell disease.
Social Determinants of Health
Poverty and social isolation are two examples of economic and social conditions that influence people’s health, known as the social determinants of health. Other social determinants of health include employment status and working conditions, ethnicity, food security and nutrition, gender, housing, immigration status, social exclusion, and residing in a rural or urban area. Social determinants of health can have strong effects on individual and population health; they play an important role in understanding the root causes of poorer health. People with sickle cell disease often live under stressful social and economic conditions that may worsen their overall health and well-being, including social stigma, discrimination, and inadequate access to education, employment, income, and housing.
A strengths-based practice actively involves the person and the care providers who support them in working together to achieve the person’s intended outcomes in a way that draws on the person’s strengths. The person is recognized and acknowledged as the expert of their own lived experience, while the clinician is recognized as an expert in their discipline and in facilitating a conversation that reinforces the person’s strengths and resources.
Trauma-informed care is health care that reflects an understanding of trauma and the impact that traumatic experiences can have on human beings. This approach does not necessarily address the trauma directly; rather, the approach acknowledges that a person may have experienced a previous traumatic event that may contribute to their current health concerns and emphasizes understanding, respecting, and responding to the effects of trauma.