Cultural Influences on Palliative Family Caregiving: Examining Program Recommendations Specific to Formal Service Settings & Services Allison M. Williams, PhD CIHR Chair in Gender, Work & Health McMaster University, Hamilton ONT Family Caregiving & Cultural Differences May 22, 2014 Toronto, ONT

Acknowledgements: Rhonda Donovan, Doctoral Candidate Mary Ellen Macdonald, McGill University Robin Cohen, McGill University Kelli Stajduhar, University of Victoria Denise Spitzer, University of Ottawa to CIHR for the operating Grant Funding received Thanks to the family caregivers who participated in the research

Background Families (or family caregivers – FCGs) play an important role in the care for their seriously-ill loved-ones in the home Difficulty accessing services for culturally-diverse FCGs Lack of research which examines caregiving in relation to FCGs’ social and cultural identities ‘Culture’ offers a framework through which to understand group attitudes and behaviours This knowledge can help inform the development of culturally-appropriate supports and services

Background The following suggestions are based on a qualitative case study research of Vietnamese FCGs caring for a seriously ill family member n=18; average of 3 interviews each Christian Dutch Reformed FCGs caregiving for a seriously ill family member n=5; average of 3 interviews each thematically analyzed using Nvivo software  Donovan, R.; Williams, A. (in press) Caregiving as a Canadian- Vietnamese Tradition: “It’s like eating, you just do it” Health & Social Care in the Community.  Donovan, R.; Williams, A.; Stajduhar, K.; Brazil, K.; Marshall, D. (2011) “The influence of culture on home-based family caregiving at end- of-life: A case study of Dutch reformed family care givers in Ontario, Canada.” Social Science & Medicine 72, pp

Key Findings: Motivations for Care Defines “who” FCGs are and what leads them to take on caregiving “I am a Vietnamese person so I have to take care of my mom. You can’t just leave her. The doctor has already said that to me. My father works and my husband has to work, right? And therefore because I am the daughter, I have to provide care. A special care because we have to take her to the washroom. Special because we are girls. There is no way a boy go and wipe bottoms or do this and that, or bathe and wash for her. So I have to do it, that’s it.” (FCG14 Int 1; our emphasis)

Key Findings: Orientation to Care Defines FCGs’ perceived goals for care “You have to pray. Everything is related to a faithful heart… ‘Let my mom get well and have strength so that she can take her medications so that she can be strong and live with us’ ….You pray, but you also have to give her medication, give her food, so that it converges together. If you only pray and you don’t give her the medication or food to eat, how can she be well?” (FCG09 Int 1; our emphasis)

Key Findings: Orientation to Care Defines FCGs’ perceived goals for care “So every morning I would wake up, and I would get up really early, probably around 6 something, I had to prepare and cook before I taking [sic] it to the hospital. Because he couldn’t eat the hospital food because he was Vietnamese. He ate Vietnamese food. So therefore I was afraid that he wouldn’t have strength because he wouldn’t eat enough. So I had to cook foods that he would eat, like soup or rice porridge and stuff like that which he liked to eat.” (FCG08 Int 2 – Our emphasis)

Key Findings: Impacts of Care Defines the intensity of culturally-specific care “For example, we are shy about [when] someone showers us…as Vietnamese we’re shy letting people shower us. So, at first I bathed him, then I let the personal care worker assisting [sic] him after I started to get ill; he didn’t agree, so I’d tell him to leave [on] his underwear...” (FCG08 Int 3 - our emphasis) “Home care came for one hour two times a week. But they didn’t speak Vietnamese so I would still have to be here. They can’t speak [communicate with the care recipient] and they can’t lift her, so I still had to be here to help. [So] what’s the point? Someone else may as well have them [the services].” (FCG17 Int 2 - our emphasis)

Discussion ‘Culture’ offers a framework through which to understand the motivations, nature, and impact of informal palliative caregiving Can help identify both cultural preferences and the barriers that facilitate care We have suggested several evidence-based strategies that may help practitioners provide culturally-specific care for Dutch Christian Reformed and Vietnamese FCGs May inform practices with other culturally-diverse groups

Implications Culturally-competent services Based on language & culturally-appropriate need Language, particularly of the care recipient Family-oriented, rather than patient-centred care Value/need associated with food preferences Privacy Modesty Multiple health care approaches

Implications Accessible formal services Practical & financially feasible Language-matched Provide useful assistance (administer medications, lift care recipients, etc.) Understanding and respect for cultural diversity Affordable

Implications Cultural-specific caregiver supports Community-centred & promoted Caregiver-specific supports Language-specific materials Available in print and audio-visual mediums

Policy/Program Suggestions 1.Assertion to take on informal caregiving role needs to be carefully negotiated 2.Recognition that formal health care providers are often the only conduit for information 3.Recognition of the importance of trust-building over time and place

Policy/Program Suggestions 4.Need for the provision of positive affirmation 5.Given the silent suffering, lack of self-care, and few social supports experienced by informal caregivers, clear need for self-care interventions 6.Recognition of few economic resources

Policy/Program Suggestions 7.Encourage the use of whole-person care 8.Recognition of food 9.Use of cultural-specific print and audio-visual materials 10.Use of cultural brokers in all medical/health encounters

How can these suggestions be integrated into your practice? Thank you!