AARP Public Policy Institute INSIGHT on the Issues Meeting the Needs of Diverse Family Caregivers Susan C. Reinhard and Rita Choula AARP Public Policy Institute Addressing the needs of racially and ethnically diverse family caregivers can play an important role in reducing unnecessary hospitalizations and nursing home care, and improving transitions between care settings. Qualitative research conducted by the AARP Public Policy Institute shows that many of those needs are not being met. It also suggests that health care professionals can help address the needs of family caregivers as they assume ever-increasing responsibilities in health care management. This research is based on a series of focus groups with Hispanic and African American family caregivers, as well as nurses and social workers, held in cities across the nation in 2011. Family caregivers are assuming ever- care that would “make nursing students increasing responsibilities for managing tremble.” 1 They also serve as care health care at a time when the older adult managers, helping their family members population in the United States is navigate the rocky pathways between becoming more racially and ethnically multiple health care and social service diverse. This Insight on the Issues professionals and settings. 2 highlights themes that emerged from discussions with family caregivers, and These significant responsibilities are part with nurses and social workers about their of the “new normal” for family attitudes toward family caregivers and the caregivers, whose unpaid contributions health care and social service systems in are estimated to be worth $450 billion which they work. The research identifies annually. 3 Despite deep personal and barriers that hinder effective collaboration economic investments in the care of their between diverse family caregivers and family members, family caregivers health care professionals. It also identifies report that they seem largely invisible to potential solutions offered by caregivers those who might be able to help them and health care professionals that can feel more respected and confident in benefit both parties. providing care. And, they say, rarely does anyone ask them how they are doing, what their needs are, and how Why Explore the Needs of Diverse those needs might be addressed. Caregivers? It is crucial to better assess and address Family caregivers are the chief these needs for two reasons. First, supporters of people with chronic supporting the caregiver as a provider conditions and ongoing needs for can bolster confidence and skill in giving personal care. In the past few decades, care to people who are at risk of they have also become lay nurses and worsening health and well-being. social workers. Many perform complex Supporting caregivers fundamentally tasks such as injections, wound care, aligns with the public policy imperative tube feedings, and other kinds of skilled Meeting the Needs of Diverse Family Caregivers to reduce expensive and unnecessary  Both Hispanic and African American hospitalizations and nursing home care. caregivers earn on average less than Second, supporting the caregiver as a $50,000 annually (56 percent and client can prevent that caregiver from 59 percent, respectively, vs. becoming the person at risk of 34 percent of white caregivers). worsening health and well-being. Without a focus on the caregiver’s needs Focus Groups Offer Insight into from both of these perspectives, there Needs will likely be two “patients” who need substantial intervention. To explore the needs of diverse family caregivers, the AARP Public Policy But what are these needs? While all Institute collaborated with Lake caregivers face difficult challenges to Research Partners to conduct qualitative maintain their health and emotional well- research with Hispanic and African being, through qualitative research, this American caregivers and with nurses report highlights themes specific to the and social workers who interact with experiences of African American and family caregivers. The research involved Hispanic family caregivers and the nurses seven focus groups completed in January and social workers who interact with 2011 in California, Illinois, Maryland, them in hospital and community settings. and Virginia. One Out of Five Caregivers Is Four groups (one in Spanish) involved Hispanic or African American diverse family caregivers. Each group had a mix of gender, age, income, and In 2009, some 42.1 million family education. All caregivers were required to caregivers in the United States provided have had an in-hospital experience with care to an adult in need of help with daily their family member in the past activities. Three-fourths (76 percent) of 18 months to qualify for the focus groups. family caregivers are white. One in ten (10 percent) is Hispanic and one in nine Three focus groups involved nurses and (11 percent) is African American. 4 As the social workers. These health care country becomes more diverse over time, professionals were evenly mixed in all these proportions will change. We will see three groups, since both interact with an even greater population of diverse family caregivers when it comes to caregivers. hospital discharge and addressing home care needs. Other important statistics: Nurses represented a variety of  Hispanic family caregivers are an specialties, including intensive care, average of 43 years old and tend to be emergency room care, wound care, younger than white (51 years old) and cardiology, orthopedics, and oncology. African American (48 years old) Social workers included those based in caregivers. hospitals as well as private care organizations. The nurses and social  Marital status also varies according workers were screened to ensure that they to ethnicity. Hispanic caregivers are work with ethnically and racially diverse less likely to be married than white populations. caregivers (48 percent vs. 63 percent) but more likely to be married than African American caregivers (44 percent). 2 Meeting the Needs of Diverse Family Caregivers What Concerns African American said they often did not receive Family Caregivers? sufficient training in administering injections. They also reported that they were not formally trained in other areas, “There was no training in the such as how to move their family hospital. The nurses gave you member from the bed to the bathroom, written instructions. They said this how to change an adult diaper, or how is how you do it. This is what you to get the care recipient to walk. need to do. And this is your job.”  Racial stereotyping occurred in some —African American male caregiver instances. An African American male Bethesda, MD family caregiver said he was not taken seriously in the hospital because he was dressed in jeans and a baseball African Americans in the focus groups cap—“like he was from the ‘hood.’” had assumed their roles voluntarily, and He felt he had to prove himself and his many were juggling a full-time job and knowledge of the situation in order for young children with caregiving health providers to treat him seriously. responsibilities. The caregivers were  Most were confused by the hospital managing a range of health conditions discharge process. They felt the for their family members, including information they received was not diabetes, high blood pressure, high helpful and often given by a person cholesterol, obesity, amputations, who had no knowledge of their family Parkinson’s, and Alzheimer’s or other member. Most said they were not related dementias. They were also prepared emotionally or physically to providing an array of services such as provide so much care; some said they bathing, diapering, help with walking, quit their jobs or retired early in order preparing meals, giving injections, and to provide the care. administering medications.  Medication management was one of the The two focus groups with African biggest challenges. Family caregivers American family caregivers revealed a reported being confused about dosage range of common concerns. African amounts and when medication should American caregivers felt invisible in the be administered. They said the hospital. Many felt ignored by the instructions on the medications were hospital staff. Some said doctors, nurses, often not clear and felt the hospital and social workers often left them out of should have given them a few days of discussions about their family members, medication to use so they did not have and it was sometimes difficult to get to rush off to the pharmacy as soon as their questions answered. Family they got home. Additionally, they were caregivers said it is important to include often confused by the addition of them in these discussions because often medications to the existing medication patients do not understand what the regime. They were unsure of what doctors and nurses are explaining and should still be taken versus which they fail to retain vital medical medications might no longer be needed. information. Other common concerns:  Many family caregivers felt isolated  Lack of training by nurses caused and misunderstood. Some felt they frustration when the family caregiver were unable to leave the house for returned home and had to take charge fear something would happen to their of care. For example, family caregivers family member. There was a sense of 3 Meeting the Needs of Diverse Family Caregivers loss of the life they used to have other related dementias, alcoholism, high before they became family caregivers. blood pressure, and high cholesterol.  Mental health needs were difficult  The caregivers said they would never for family caregivers to handle. put their family members in a nursing Some caregivers said their family home. They were determined to members experienced depression, provide care in their own homes no mood swings, and erratic behavior matter how complex the health needs once home. They did not know became. Caregiving responsibilities where to turn to for resources and are shared throughout the family. help. This added to the family caregivers’ stress and worry,  Like African Americans, Hispanics said affecting their own mental health. they often felt invisible in hospitals. These family caregivers believed that they needed to be included in What Were the Concerns of conversations about their family Hispanic Family Caregivers? member’s care and wanted doctors, nurses, and social workers to address them as well as the patient. “There is a “Overall, I am fearful of being able lack of empathy (from nurses and social to handle all of her needs. I am workers). They don’t seem to realize fearful that she could fall again. I that you (the family caregiver) are the am fearful that she could get hurt one that is there for them 24/7, and you again and that I won’t be able to are the primary caregiver…” said a help her. More than anything it’s family caregiver from Chicago. the constant fear.”  Language is a major barrier for —Spanish-speaking Hispanic caregiver Spanish-speaking Hispanic family Los Angeles caregivers in hospitals. They felt that their family members received inferior care as a result of the language barrier Hispanic family caregivers said they and that caregivers did not understand always knew they would be a caregiver important information. They also said in some capacity and that providing care translation services were not always for someone as they get older is a offered and that they had to request cultural tradition. them. In many instances the health care professional delegated responsibility for A number of Hispanic family caregivers translating to the family caregiver, who said they started caregiving when they were might not have a good understanding of very young. Many, particularly female the information being translated in the caregivers, have had years of experience first place. caring for their grandparents, parents, aunts, and uncles. However, many said  Not enough formal training was caregiving is still stressful and challenging, available in hospitals for Hispanic especially for those who work at a paying family caregivers. English-speaking job and have young children at home. Hispanic family caregivers were more likely to be offered formal training by Like African American family health care professionals than non- caregivers, they were trying to manage English-proficient Hispanic family complex health problems, such as caregivers. However, often the training diabetes, arthritis, stroke, heart attack, was hurried and informal. cancer, Parkinson’s, Alzheimer’s and 4 Meeting the Needs of Diverse Family Caregivers  Family caregivers looked primarily particularly true among Spanish- to doctors and other clinicians as the speaking family caregivers who were best source of information about afraid that they could not afford extra caring for their loved ones. This services that might be available to them. caused frustration, since many of these clinicians were unable to spend  Managing multiple health conditions and care needs is difficult. Most Hispanic enough time with them. family caregivers are caring for loved  Some Hispanic family caregivers ones with multiple conditions and seeing misunderstand the role of social two or more specialists. These family workers. Most caregivers believed caregivers seemed to be receiving little that social workers only determine or no help from the health system in the kind of insurance that will pay managing these conditions. for the family caregiver’s loved one. They did not understand that social  Lack of knowledge is a barrier to resources. Most Hispanic family workers can link them with caregivers who were not receiving community services and information services did not know where to go to sources that can help them. find them. That is why they rely on their  Family caregivers believed they were community for support and advice on treated poorly because they are caring for their loved ones. Often, family Hispanics. A number of Hispanic caregivers are routed to resources in family caregivers said they were not their community that do not have treated as well as other ethnicities in translation services. This poses an the Chicago area, such as Polish or additional problem for caregivers and Filipino. They referred to the their families who need that assistance. personal treatment they received Family caregivers agreed that they from hospital admissions staff and would welcome more information on the quality of care their loved ones resources and services that might be received. The caregivers believed available to them. this stems from stereotypes of Hispanics as being uninsured or What Were the Concerns of undocumented immigrants. Nurses and Social Workers?  Most family caregivers felt unprepared to bring their family members home from the hospital. “We do see a lot of differences Most felt their loved ones were with the (family) caregivers. sicker when they returned home, and Sometimes we have to treat the as a result the caregivers felt caregivers more than we do the inadequate to provide care. Some individual patient. There are a lot family caregivers called it “nerve- of differences, culturally.” wrecking.” Family caregivers also felt isolated when they returned —Social worker, Bethesda home with their loved ones and often separated themselves from their Three focus groups brought together friends and social life. nurses and social workers to discuss  Financial concerns were a barrier to their attitudes toward diverse family seeking services. If family caregivers caregivers, their concerns, and their perceived services to be expensive, they practices. Most of the participants were never investigated them. This was hospital-based, but some of the social 5 Meeting the Needs of Diverse Family Caregivers workers worked in community settings. perform an assessment when doing a The experience levels of both the nurses home visit with the client, first meeting and social workers ranged from those family caregivers and patients in their who had more than 20 years’ experience home. Social workers are increasingly to a few in the beginning of their career. creating and giving families an assessment report when a family These health care and social service member comes home from the hospital. professionals shared a strong The report provides a comprehensive commitment to their work and to helping summary of what care the recently people. While many entered their hospitalized person needs, what that profession with certain expectations, person may be able to do on their own their professions have changed in recent as well as what assistance the family years, making their work more difficult caregiver is able to provide, current and challenging. Their top priority is medications, and the status of insurance working with older adults, but they find (i.e., Medicaid, Medicare, private themselves increasingly spending more insurance). time with paperwork.  Translation services can help overcome Demands on nurses and social workers language barriers. Both nurses and today are different and more intense than social workers said they frequently when they joined the professions. Many interact with families who do not speak said their patient/client loads are English as a first language. While significantly higher and that they are translation services do exist, often they dealing with sicker individuals. Social are not immediately available, and workers felt they are working more and delays often conflict with the already more with insurance companies to get hectic schedules of staff and family care for their clients. This left them with caregivers. Hospitals use a family less one-on-one time to interact with the member as a translator only as a last clients and their families. resort, because family caregivers may filter information out of fear that it will Both nurses and social workers said they cause anxiety and scare the patient, and remain in their professions because they family members themselves may not find it rewarding to comfort and care for understand the medical terminology those who may be scared to be in the and therefore not interpret it correctly. hospital and who need additional help when they return home.  Formal training processes are in place before discharge from a The following themes emerged from the hospital, but families that focus groups: professionals consider “noncompliant” pose problems.  Nurses and social workers said it is a Often standard training procedures major challenge to handle cultural are in place for equipment or medical differences among their clients on a needs such as catheterizing and daily basis, especially because cultures colostomy bags. The family member often differ in terms of care is invited to observe the procedure preferences. End-of-life issues, which being performed by the nurse at a tend to highlight these cultural specific time, which is not scheduled differences, offer some of the most in collaboration with the family difficult challenges. caregiver. Due to employment and other responsibilities, caregivers may  Social workers said that an effective have no choice but to avoid or skip way to identify cultural needs is to 6 Meeting the Needs of Diverse Family Caregivers these training appointments. These While caregivers are given booklets appointments are rarely rescheduled, about medications, there is so much leaving the family caregiver no information that caregivers cannot training on how to perform the task. digest all the information in just a few hours. They are particularly  Distractions at the hospital can also confused when new medications are be a barrier to effective training for prescribed on top of the medication family caregivers. With so much already at home. Which ones should activity in the patient’s room—x- be given? rays, clinician visits, nurses taking vital signs—family caregivers can be overwhelmed by the amount of How Can Collaboration and information they are given. Also, Communication Be Improved? nurses and social workers often come into the room to talk about In this qualitative research study, all three discharge planning, community groups—African American and Hispanic resources, and equipment training in caregivers and health care professionals— the final moments before discharge. were presented with potential solutions One suggestion to solve this problem and asked to score each on its was that if patient care were better effectiveness in addressing the needs of scheduled to include the family diverse family caregivers. The solutions caregiver as well as the patient, were aimed at increasing collaboration and patients and family caregivers might communication between the families and have more time to absorb the the professionals. information and ask questions. Both African American and Hispanic  Written materials for the caregiver family caregivers favored the following are often complicated, use too much solutions: jargon, and are hard to follow. Nurses generally think the materials  Establish a 24/7 help phone line, are overly detailed and use complex, where caregivers could call for medical language. Social workers answers to questions regarding the say they have trouble understanding care of their loved ones at home. the discharge instructions provided  Health care professional first show by the hospital. Some nurses are caregivers how to do the task, with using pictures and videos to train training sessions called “return family caregivers. demonstrations,” where the  Questions about medications are professional observes the family common once a patient is home. In caregiver performing the task. An fact, medication is the number one additional way to teach family topic. Patients are not given refills on caregivers the specific tasks they their medications before they leave may need to perform would be a the hospital. Discharge often occurs follow-up phone call to see if the in the evenings. If a family member family caregivers retained the has to drop the patient at home and information. then leave the house again to pick up  Prior to discharge, a nurse schedules prescriptions, it can be an appointment with the physician or overwhelming. other clinician so patients know when  Side effects of medications pose they need to return for follow-up care. serious concerns for caregivers. 7 Meeting the Needs of Diverse Family Caregivers  A care coordinator is available These family caregivers say they want following discharge from the resources to help them better care for their hospital. If the patient’s health care family members, not someone else to needs are very complex, the health perform the tasks for them. They want care professional, likely a nurse, more knowledge and confidence, and would be able to visit the patient at backup if they need more training and home for several months after information. A 24-hour hotline and training discharge, as needed, and also be sessions would be the most helpful, available by phone. according to diverse family caregivers.  Social workers call patients and Social workers and nurses who work with caregivers after discharge to make diverse family caregivers express their sure patients receive the services concerns about interpreting what caregivers outlined in the discharge plan. A care need and how to make them feel confident coordinator also would be helpful in that they can care for their loved ones after navigating the health care system. they return home. They agree that a care coordinator would be beneficial to help In addition to the above solutions, family caregivers navigate the complicated African American family caregivers health care system. were most interested in online support and a telephone line to call for additional Some solutions require changes at the information. Hispanic family caregivers individual level where health care felt that non-English-proficient patients professionals and caregivers interact. Care and caregivers should have routine managers, for example, could help family access to translation services, especially caregivers navigate the complicated health during discharge, so they can understand care system. Nurses can also integrate the instructions. family caregiver assessment into their daily practice. 5 In 2010, the National Nurses and social workers often agree Association of Social Workers (NASW), with the diverse family caregivers on in partnership with the AARP Public how to ensure communications and Policy Institute, developed NASW collaboration. They support a 24-hour standards for social work practice with hotline to have caregivers’ and patients’ family caregivers of older adults. The questions answered and to give standards address support for family caregivers confidence that they have an caregivers across a range of care settings. 6 easily accessed resource. The care coordinator—rated high among African But meeting the needs of diverse family American and Hispanic caregivers—was caregivers also requires organizational rated the top solution by nurses and support and changes in public policy. social workers. States should incorporate a culturally competent assessment of caregivers’ Conclusion needs in all publically supported programs. 7 As health care delivery African American and Hispanic family reformers invest resources in reducing caregivers seem eager for more outside unnecessary hospitalizations and resources to help manage the needs of improving care transitions for people their family members. But they feel such with multiple chronic conditions from assistance is not always present in one setting to another, they should hospitals or during a rushed discharge address the needs of caregivers in process. general and provide targeted interventions for diverse caregivers. 8 Meeting the Needs of Diverse Family Caregivers Because supporting family caregiving is and The John A. Hartford Foundation a key dimension of a high-performing for their generous support of this system of long-term services and analysis. Part of a larger initiative, supports, states need to incorporate a Professional Partners Supporting culturally competent assessment of Family Caregivers, this qualitative caregivers’ needs in all publically research informs policy and practice for INSIGHT on the Issues supported programs. 8 a growing population of diverse caregivers. We are also thankful for our Acknowledgments collaboration with Michael Perry of Lake Research Partners, and for the The authors gratefully acknowledge The helpful review and suggestions of Rita Jacob & Valeria Langeloth Foundation Manno, Lynn Feinberg, and Jean Accius Endnotes 1 S. Reinhard, "Nursing's role in family caregiver support," in Caregiving and Loss: Family Needs, Professional Responses, ed. K. J. Doka and J. D. Davidson (Washington, DC: Hospice Foundation of America, 2001), 181–90. 2 S. C. Reinhard, C. Levine, and S. Samit, Home Alone: Family Caregivers Coping with the Tasks of Complex Chronic Care (Washington DC: AARP Public Policy Institute and the United Hospital Fund, forthcoming). 3 L. Feinberg, S. C. Reinhard, A. Houser, and R. Choula, Valuing the Invaluable: 2011 Update, the Growing Contributions and Costs of Family Caregiving, AARP Public Policy Institute Insight on the Issues 51 (Washington, DC: AARP, June 2011). 4 National Alliance for Caregiving (NAC) and AARP, Caregiving in the U.S,2009 (Bethesda, MD: NAC, and Washington, DC: AARP, November 2009). Funded by the MetLife Foundation. 5 C. Levine, "The Hospital Nurse's Assessment of Family Caregiver Needs," American Journal of Nursing111, no.10 (2011): 47–51. 6 National Association of Social Workers, NASW Standards for Social Work Practice with Family Caregivers of Older Adults (2010), http://www.socialworkers.org/practice/standards/ NASWFamilyCaregiverStandards.pdf. This work was funded by AARP through support of The John A. Hartford Foundation. Insight on the Issues 69, September, 2012 7 S. C. Reinhard, E. Kassner, A. Houser, and R. Mollica, Raising Expectations: A State AARP Public Policy Institute Scorecard on Long-Term Services and Supports 601 E Street, NW, Washington, DC 20049 for Older Adults, People with Physical www.aarp.org/ppi Disabilities, and Family Caregivers 202-434-3890, ppi@aarp.org (Washington, DC: AARP Public Policy Institute, The Commonwealth Fund, The SCAN © 2012, AARP. Foundation, September 2011). Reprinting with permission only. 9