Health Services Experiences of Immigrant Families Raising a Child with a Disability
Researchers: Gillian King, Sally Lindsay, Victoria Esses, Anne Klassen, Suzanne Robinson, and Melissa Stachel
Very little is known about the health service access and service care experiences of immigrant families in Canada (King, Esses, & Solomon, in press). This is a significant issue with implications for policy and practice regarding the integration and well-being of newcomers and their children in Canadian society.
To address this gap, we conducted a study examining the experiences of immigrant parents from Asia, Africa, and the Caribbean who are raising a child or youth with a disability in the Greater Toronto or Hamilton areas. We involved three groups in the study:
• immigrant parents raising a child with a disability,
• service providers in health care centres, and
• representatives of community service organizations that provide support to newcomers.
We describe here the focus groups we conducted with these participants. We asked these participants about barriers in service delivery for immigrant families, families’ needs, and the extent to which families receive services sensitive to and respectful of their culture. A total of nine focus groups and individual interviews were conducted. We asked participants to tell us their thoughts about service access, utilization, and service care experiences, as well as helpful practices. The focus groups and interviews were audio taped. We transcribed these tapes, and then analyzed the interviews looking for common themes.
Three categories of themes emerged from the analysis of the information. Together, they point to the kinds of difficulties faced by immigrant families seeking services for their child with a disability.
1. Language, knowledge, and financial barriers to service access and utilization
Parents mentioned language, knowledge, and financial barriers. As well, language and communication issues were a key challenge for clinicians and community service workers. Lack of training in working with interpreters led to difficulties in providing effective care.
2. Unmet needs
A key challenge encountered by many health care and community service providers was helping immigrant families to advocate for themselves to obtain supports and resources for their child.
3. Culturally sensitive services
Health care and community service providers had several recommendations for improving culturally sensitive or family-centred care to immigrant families raising a child with a disability:
• More education and training is needed around how to provide culturally sensitive care.
• Immigrant families need more help in becoming aware of the resources that are available to them so that they can advocate for access to services.
• It would be helpful to match clinicians with families from similar backgrounds (where feasible) and to hire more ethnically and linguistically diverse staff.
• Link newcomers with families in similar circumstances and who speak the same language to help orient them to the health care system.
• When possible, health providers should try to work with the same or preferred interpreter for each visit.
• Take extra time to understand family contexts and histories, including their experiences and perceptions of health care.
• Home visits and personalized support networks would help immigrant families to navigate the system.
These findings provide important information for service organizations regarding health service barriers experienced by immigrant families raising a disabled child, and will inform the development of best practices. An article has been accepted for publication based on this information (Lindsay, King, Klassen, Esses, & Stachel, in press).
Implications for families and service providers
• Service provider training. Most service providers did not have any training in cultural competency and believed that such training was important in working with immigrant families with children with disabilities. Topics for training should include culturally sensitive care, as well as information about immigrant families’ perceptions of disability and health. Service providers need to be aware that immigrant families may not ask for help or alternative treatment options because of their perceptions of authority. When service providers and community service representatives have greater community connections, they are able to refer families to services available in the community.
• Use of translators. It would be beneficial for service providers to be trained on how to work with translators, to be aware of the language services available to immigrant families, and to be aware of the importance of using a translator in meetings with families. It is important to offer language support to families and not assume that the family knows that such support exists.
• Service providers from diverse backgrounds. Hiring service providers from ethnically diverse backgrounds may be a useful strategy to break down barriers between immigrant families and service providers.
• Taking extra time with immigrant families. Immigrant families need extra time to be able to ask questions. Service organizations should consider giving explicit permission to service providers to take the extra time to talk with immigrant families about their health histories and their contexts before immigrating to Canada. It is important not to assume that families have knowledge of the services, supports, equipment, funding, and possibilities for their children.
• The importance of support. Parents indicated the importance of support from service providers, and also the need for parent support groups that will allow them to meet and talk to others who have children with similar disabilities. Community services need to support the creation and maintenance of immigrant parent support groups for parents who have a child with a disability. In addition, service providers need to be aware of parent-led support groups and refer families to them.
• Help in navigating the system. If possible, service providers should link immigrant families with a social worker or settlement worker who can help them navigate the system, including finding services, helping them fill out forms, and getting them supports.
• Home visits. Families have positive experiences when services come to them and they receive services for their child in their homes.