This talk will concentrate on working with caregivers of our older adult Spanish-speaking patients and discuss related literature.
We must focus attention on the needs of the individual patient and consider the family when creating a plan of care. It is important to be sensitive to culturally-based religious and spiritual traditions; health beliefs; values; attitudes; and behaviors; and how these issues impact the quality of the health care experience, including the care-giving roles.
The predominance of adult daughters in caregiving for older adult family members may be particularly stressful in many Hispanic families, according to the literature, which identifies high risk factors for depression among female caregivers. The lack of culturally relevant services and a reluctance to use more formal supports has also been described in the literature. In many cases, adult children may leave their jobs or work reduced hours to provide necessary care for their loved ones.
Additional responsibilities fall to the caregiver regarding the quality of the doctor-patient relationship, which is critical to health care outcomes and medical adherence. Disparities such as ethnicity, culture, and language between doctor and patient are known to negatively impact communication. The literature includes these findings:
This is further complicated by challenges in health literacy. Therefore, it often falls on the caregiver to attend doctor’s appointments, explain information to the patient and take responsibility for carrying out aspects of the treatment plan.
We often see examples of multiple layers of caregiver burden while working with our patients:
As social workers we need to adapt our communication and behaviors to be compatible with another’s cultural norms- it is not the responsibility of the patient/family to do so. We need to understand and respect the culturally based needs of patients and their families in order to provide the highest quality of care and alleviate caregiver burden.
In fact, as part of our hospital’s Community Service Plan, our goal is to extend services to older adults in the community by providing forums in English and Spanish focused on enhancing communication with the medical team about the impact of arthritis, and its treatment, with a special focus on falls prevention. We have built partnerships with community agencies that provide language-accessible and individualized home care solutions to help to prevent falls, reduce isolation, and improve overall quality of life.
In conclusion, social workers mediate barriers to care, align with the patient and caregiver, and identify the “best” plan while acknowledging that there are some issues that are not easy to resolve. We continue our efforts to understand the needs of our patients while taking into account the essential roles and concerns of caregivers, and we look to provide what is needed and available to reduce barriers and access to care.
Thanks to Carol Levine’s efforts in this arena, we have a model to guide us in the integration of the caregiver into the overall care plan. A quote from Carol’s report “Rough Crossings” perfectly states: “Caregivers want recognition that they are part of what is happening…they want information and training…to allow them to feel confident in their own ability to provide care. They want access to professional advice and to be able to communicate with health care professionals…they want to be able to trust that the patient will be given good care and treated compassionately.”(2)
Under the management of Ms. Kleinman, VOICES 60+ is an advocacy program for low-income, ethnically diverse, predominantly Hispanic and African American, older adult patients with rheumatologic and related orthopedic conditions in Hospital for Special Surgery’s Ambulatory Care Center. The program’s goal is to enhance the medical care experience by assessing psychosocial needs while helping patients to navigate and access the care, community resources, and education they need to improve their quality of life.
This presentation was part of The New York Metropolitan Chapter of the Society of Social Work Leadership in Health Care Fall Educational Conference, held at Hospital for Special Surgery on Tuesday, October 27, 2009. Ms. Kleinman was a panelist at the conference.
1. Adelman R, Greene MG. Psychosocial factors in older patients’ medical encounters. Research on Aging 1996; 18:1, 84-102.
2. Levine C. Rough Crossings: Family Caregivers' Odysseys through the Health Care System. New York: United Hospital Fund, 1998.
Juliette Kleinman, LCSW, ACSW
Senior Program Manager, VOICES 60+ Senior Advocacy Program
Department of Social Work Programs, Hospital for Special Surgery