Best Practices When Working With Caregivers of Ethnically Diverse Families

Introduction

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.

Effects on Caregivers

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:

• Doctors spend less time and are less likely to ask about psychosocial issues with older adult patients during the medical encounter. Older adults receive less health education and counseling than younger patients. Older adult patients ask fewer questions and defer to the physician’s authority.(1)

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:

• Linguistic barriers and level of acculturation: A patient’s family member who attends appointments may be the only member of the family who speaks English, and often the patient refuses medical interpretation services offered by the hospital. It is commonly expected by the patient that the English-speaking family member will be the designated link to the healthcare team.
  
  Through the recruitment of bicultural and bilingual staff, bilingual program health information, and collaborative intervention with the medical team, we play an integral role in mitigating these barriers in challenging situations.
• Caregivers may not understand how to navigate and/or access the complex health care system. For example,a family came in with concerns about the stress of supervising their mother with advanced Alzheimer’s disease between homecare shifts; the daughter-in-law had to leave work early to relieve the day worker.
  
  Social workers must be proactive in partnering with community agencies to work towards a comprehensive care plan. Therefore, we identified an agency in the community that provides comprehensive home services to Spanish-speaking patients and specializes in dementia care.
  
  We facilitated an increase in homecare hours and a Spanish-speaking home attendant was placed. The son continues to shop for the mother once a week, and the home attendant prepares Spanish food for the patient. This has greatly reduced the caregiver burden for this family.
• The caregiver may be experiencing their own family stressors while it is still assumed by the patient that the caregiver will provide the care for them. Recently a daughter accompanied her mother, the patient, to her doctor’s visit and tearfully shared about her own caregiver stress- she has to take care of her mother and her children. Her mother is very depressed and unable to care for herself at night. The daughter has a disabled son at home and she feels great conflict over how to prioritize.
  
  In this case, which is not unusual, this family feels the health care system has failed them. The daughter did not understand how to advocate for her mother, nor did she know that services were available.
  
  Therefore, we outreached to the homecare agency to request a social work assessment for the patient’s depression and worked with her doctor to increase homecare hours.

Caring for the Caregiver

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)

The VOICES 60+ Program at HSS

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.

References:

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.

Posted: 4/1/2010

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