Exploring the lived experience of patients and families who speak language other than English (LOE) for healthcare: developing a qualitative study.

BACKGROUND: Patients who use Languages other than English (LOE) for healthcare communication in an English-dominant region are at increased risk for experiencing adverse events and worse health outcomes in healthcare settings, including in pediatric hospitals. Despite the knowledge that individuals who speak LOE have worse health outcomes, they are often excluded from research studies on the basis of language and there is a paucity of data on ways to address these known disparities. Our work aims to address this gap by generating knowledge to improve health outcomes for children with illness and their families with LEP. BODY: We describe an approach to developing a study with individuals marginalized due to using LOE for healthcare communication, specifically using semi-structured qualitative interviews. The premise of this study is participatory research-our overall goal with this systematic inquiry is to, in collaboration with patients and families with LOE, set an agenda for creating actionable change to address the health information disparities these patients and families experience. In this paper we describe our overarching study design principles, a collaboration framework in working with different stakeholders and note important considerations for study design and execution. CONCLUSIONS: We have a significant opportunity to improve our engagement with marginalized populations. We also need to develop approaches to including patients and families with LOE in our research given the health disparities they experience. Further, understanding lived experience is critical to advancing efforts to address these well-known health disparities. Our process to develop a qualitative study protocol can serve as an example for engaging this patient population and can serve as a starting point for other groups who wish to develop similar research in this area. Providing high-quality care that meets the needs of marginalized and vulnerable populations is important to achieving an equitable, high-quality health care system. Children and families who use a Language other than English (LOE) in English dominant regions for healthcare have worse health outcomes including a significantly increased risk of experiencing adverse events, longer lengths of stay in hospital settings, and receiving more unnecessary tests and investigations. Despite this, these individuals are often excluded from research studies and the field of participatory research has yet to meaningfully involve them. This paper aims to describe an approach to conducting research with a marginalized population of children and families due to using a LOE. We detail protocol development for a qualitative study exploring the lived experiences of patients and families who use a LOE during hospitalization. We aim to share considerations when conducting research within this population of families with LOE. We highlight learning applied from the field of patient-partner and child and family-centred research and note specific considerations for those with LOE. Developing strong partnerships and adopting a common set of research principles and collaborative framework underlies our approach and initial learnings, which we hope spark additional work in this area.

Prenatal and preconception genetic counseling for consanguinity: Consanguineous couples' expectations, experiences, and perspectives.

Consanguinity, the union between two individuals who are related as second cousins or closer, is a long-standing and respected tradition in many communities. Although there are social and economic benefits of consanguineous unions, offspring are at increased risk of having an inherited genetic condition or congenital anomaly. Genetic counseling services for consanguinity are available to couples at many centers. However, little is known about patient expectations of and experiences with genetic counseling for this indication, or their perspectives on genetic screening relevant to family planning, such as expanded carrier screening (ECS). This exploratory qualitative study involved interviews with 13 individuals who had recently received preconception or prenatal genetic counseling for consanguinity at a single center. We sought to gain insight into their expectations for the genetic counseling session, experiences discussing family history and reproductive risks with the genetic counselor, and views on ECS. Interview transcripts were analyzed using an interpretive descriptive approach. Data analysis revealed three main themes: (a) anticipation balances apprehension before the appointment; (b) genetic counseling reduces anxiety and empowers; and (c) the need for wider information dissemination about consanguinity-related risks and genetic services. Our findings support the personal utility of genetic counseling for consanguinity and demonstrate the need for increased visibility and access to genetics information, counseling, and testing relevant to this patient population.

The Relationship Between Burnout and Occupational Stress in Genetic Counselors.

Burnout represents a critical disruption in an individual's relationship with work, resulting in a state of exhaustion in which one's occupational value and capacity to perform are questioned. Burnout can negatively affect an individual's personal life, as well as employers in terms of decreased work quality, patient/client satisfaction, and employee retention. Occupational stress is a known contributor to burnout and occurs as a result of employment requirements and factors intrinsic to the work environment. Empirical research examining genetic counselor-specific burnout is limited; however, existing data suggests that genetic counselors are at increased risk for burnout. To investigate the relationship between occupational stress and burnout in genetic counselors, we administered an online survey to members of three genetic counselor professional organizations. Validated measures included the Maslach Burnout Inventory-General Survey (an instrument measuring burnout on three subscales: exhaustion, cynicism, and professional efficacy) and the Occupational Stress Inventory-Revised (an instrument measuring occupational stress on 14 subscales). Of the 353 respondents, more than 40 % had either considered leaving or left their job role due to burnout. Multiple regression analysis yielded significant predictors for burnout risk. The identified sets of predictors account for approximately 59 % of the variance in exhaustion, 58 % of the variance in cynicism, and 43 % of the variance in professional efficacy. Our data confirm that a significant number of genetic counselors experience burnout and that burnout is correlated with specific aspects of occupational stress. Based on these findings, practice and research recommendations are presented.

Experience with genetic counseling: the adolescent perspective.

Adolescence is a complex period of development that involves creating a sense of identity, autonomy, relationships and values. This stage of adjustment can be complicated by having a genetic condition. Genetic counseling can play an important role in providing information and support to this patient population; however, resources and guidelines are currently limited. In order to appropriately establish genetic counseling approaches and resource development, we investigated the experiences and perspectives of adolescents with a genetic condition with respect to their genetic counseling interactions. Using a qualitative exploratory approach, eleven semi-structured interviews were conducted with adolescents diagnosed with a genetic condition who received genetic counseling between the ages of 12 and 18 years at The Hospital for Sick Children. Transcripts were analyzed thematically using qualitative content analysis, from which three major interrelated themes emerged: 1) understanding the genetic counselor's role; 2) increasing perceived personal control; and 3) adolescent-specific factors influencing adaptation to one's condition. Additionally, a list of suggested tools and strategies for genetic counseling practice were elucidated. Our findings can contribute to the development of an adolescent-focused framework to enhance emerging genetic counseling approaches for this patient population, and can also facilitate the transition process from pediatric to adult care within patient and family-centered contexts.

Tools for addressing systems issues in transition.

Moving from pediatric to adult healthcare is a time of stress and opportunity for adolescents with special healthcare needs (ASHCN) and their families. With over 90% of children with special healthcare needs surviving into young adulthood, there is an increasing imperative to actively engage youth in preparing for the adult system (Betz and Smith 2011; Pai and Schwartz 2011). The goal of transition care is to provide young people with a coordinated, uninterrupted and developmentally appropriate transfer to adult healthcare (Kaufman and Pinzon 2007). This is often complicated by the complex medical, social and psychological tasks and requirements that adolescents experience as they navigate their healthcare and their lives as young, developing people.