Social support needs: discordance between home hospice nurses and former family caregivers.

In recent years, use of home hospice care has increased in the US, (Teno et al., 2013) and as it continues to develop and evolve, agencies work to make improvements in both care delivery and satisfaction of family caregivers. In home hospice care, family caregivers provide the majority of care with support from hospice nurses who also coordinate hospice interdisciplinary team services (Berry & Griffie, 2010; Coyle, 2010; Egan City & Labyak, 2010). Though often a successful model, caregivers nonetheless report having unmet needs related to support for inhome care (Bee, Barnes, & Luker, 2009; Kutner et al., 2009; Newton, Bell, Lambert, & Fearing, 2002). If a caregiver has unmet needs and is in turn unable to effectively navigate the demands of care, both patient and caregiver health may suffer. Caregiving has been recognized as a major stressor for families and has adverse effects on caregiver quality of life, physical health, and emotional distress (Doorenbos et al., 2007; Given et al., 2004; Markowitz & McPhee, 2003; Nijboer et al., 2000; Weitzner, McMillan, & Jacobsen, 1999). Social support has been shown to reduce caregiver burden (Rodakowski, Skidmore, Rogers, & Schulz, 2012) and is related to better caregiver health (Baron, Cutrona, Hicklin, Russell, & Lubaroff, 1990). Often, home hospice nurses are in a position to provide different forms of social support to family caregivers. Researchers have sought to determine what family caregivers in home hospice need and how, from the caregiver perspective, to best meet them (Newton et al., 2002). Across studies, caregivers frequently reported needing help from hospice nurses with symptom management and self-care, coping, needing information, and Emotional support. These needs correspond to common functions of social support, (Cutrona & Russell, 1990) as shown in Table 1, with examples. Informational support consists of providing advice or useful information for problem solving. For example, a nurse telling a caregiver what to expect or explaining a symptom or medication would be providing Informational support. Tangible support involves provision of goods, services, or other concrete ways of providing help. This would include providing medical equipment, like a hospital bed, or performing tasks, such as cleaning or changing a catheter. Esteem support includes bolstering a caregiver's confidence and self-efficacy through reassurance and encouragement. Emotional support involves offering empathy, acceptance, and often involves “being there” for someone or offering a compassionate presence. While Esteem and Emotional support are often linked and both help caregivers feel good about their role, the key difference is that the latter is a passive form of support (listening, taking in what the caregiver has to say), and the former is a more active form of support (working to build or reinforce the caregiver). Finally, Belonging support, or having networks of people to turn to for common interests and a sense of membership, is also important to caregivers. However, this may be less important to the relationship with one's health care provider; often this comes from family, friends, and other groups, such as church membership or support groups. Previous research has found needs for all of these five types of social support in coping with broadreaching life events, such as bereavement (Cutrona & Russell, 1990). Table 1 Types of Social Support Provided by Home Hospice Nurses Though social support, or physical and emotional comfort and help, is obviously needed by caregivers and has been shown to be beneficial to psychological and physical health, (Holt-Lunstad, Smith, & Layton, 2010; House, Landis, & Umberson, 1988) support is not always effective. (Lehman, Ellard, & Wortman, 1986) In order for social support to be beneficial, the social support desired by an individual has to match the support provided to him or her, or be responsive to his/her needs (Maisel & Gable, 2009); this is known as the stress-support matching hypothesis (Cutrona & Russell, 1990). Psychological stress may increase if a different type of support is provided than what the recipient wishes to receive (e.g., Information is given when Emotional support is sought), whereas matched support may ameliorate stress response by adequately addressing the need (Horowitz et al., 2001; Linden & Vodermaier, 2012; Thoits, 1986). A broad range of factors, including understanding the needs and priorities of the support recipient, shape the type of support one may offer. By tailoring support to patient and family needs, health care providers are likely to not only meet needs, but reduce distress, and enhance coping for ongoing care provision. Though home hospice nurses may identify particular caregiver needs, they still need to decide whether it is beneficial to offer support, what kind, and to what degree, based on the priorities of the patient and family as well as their own role as health care provider. Previous research with breast cancer patients has shown that there are different patterns of what type support is found to be most helpful from different ties (Arora, Finney Rutten, Gustafson, Moser, & Hawkins, 2007; Neuling & Winefield, 1988). While these patterns change over time, there is evidence that helpful support is provided by an entire network of family, friends, and providers and that the support most helpful from providers included not only information support, but often also Emotional and Esteem support. Thus, there is evidence that the role of the provider goes beyond supporting patients and caregivers tangibly through treatment and with information to make decisions, but also to bolster them emotionally and to ensure their confidence. Although one of the key roles for hospice nurses' is to address family caregiver needs, caregivers continue to report multiple unmet needs. We suggest that perhaps rather than a lack of support, ongoing reports of caregiver unmet needs may, in reality be a mismatch between the types of support caregivers need and the types of support hospice nurses provide.