The phenomenon of U.S. grandparents aged >65 serving as informal, primary caregivers to their co-resident grandchildren has been occurring for decades. This normative practice represents what Watson (2007, 2018) considers authentic life experiences, as existential–spiritual, philosophical, ethical/moral, and relational dimensions are involved. To understand the phenomenon, researchers have focused exclusively on caregivers of grandchildren aged <18. The data show primary caregivers have disproportionately been middle-aged women (Goulette, Evans, & King, 2016). However, the literature is scarce about the significantly fewer older grandparent caregivers of co-resident grandchildren >18 years old who need care (Pew Research Center, 2010). Being an older primary caregiver in a post-modern society can have a profound impact, particularly on grandmothers who provide care to young adult grandchildren. Consequently, there is a need to advance the knowledge about the unique experiences facing this vulnerable group of caregivers. The current article aims to provide a conceptual basis for this phenomenon, describe influential factors, and address practice implications.
Background and Significance
Grandparenting research has focused on middle-aged women, but reports about grandmothers who are primarily responsible for their co-resident young adult grandchildren are limited. Primary grandmother caregivers are among the 5.6 million caregivers of adult family members ages 18 to 49 (AARP & National Caregiver Alliance [NCA], 2015). This neglected group of women contributes to society by helping avoid or delay costly institutional care of their grandchildren who require help with activities of daily living (ADLs) due to short- or long-term physical, mental health, behavioral, or memory problems, and developmental or intellectual disabilities (AARP & NCA, 2015; U.S. Department of Health and Human Services [USDHHS], 2014). The AARP and NCA (2015) surveyed caregivers of young adults ages 18 to 49 years. The aggregate data revealed that 79% of these caregivers were middle-aged, White and Hispanic women who had median household incomes of $53,900. Approximately 49% of these caregivers had care recipients living with them. Although the national survey is an important first step, researchers need to describe the experiences of older primary grandmother caregivers of young adult grandchildren. Nurses can then develop collaborative partnerships of care with other health professionals, informal caregivers, and care recipients and proficiently use negotiation, coordination, and decision-making skills to generate interventions and resources that could contribute to optimal care (Nelson & Watson, 2012; Watson & Foster, 2003).
Watson's human caring science framework is well-suited for conceptualizing the phenomenon of grandmothers caring for adult grandchildren (Sitzman & Watson, 2018; Watson, 2018). Briefly, Watson emphasizes the interaction between three key components that form the theoretical–philosophical foundation of nursing as caring science: (a) caritas processes, formerly known as carative factors; (b) caring moment or occasion; and (c) transpersonal caring relationship. Caritas, which means to appreciate or cherish, explicitly captures and honors the inner life world, life experiences, and the wholeness of mind–body–spirit in nurses and the individuals they serve. Caritas processes comprise 10 dimensions—(a) formation of a humanistic–altruistic system of values; (b) instillation of faith and hope; (c) cultivation of sensitivity to one's self and others; (d) development of a helping/trusting human caring relationship; (e) promotion and acceptance of the expression of positive and negative feelings; (f) systematic use of the scientific (creative) problem-solving caring process; (g) promotion of interpersonal teaching/learning; (h) provision for a supportive, protective, and/or corrective mental, social, and spiritual environment; (i) assistance with the gratification of human needs; and (j) allowance for existential–phenomenological spiritual dimensions (Watson, 2018).
Caring moments or occasions occur when caregivers and care recipients make a conscious commitment to come together as partners to share their expertise and perspectives. A transpersonal caring relationship is reciprocal and transformative because the power-filled phenomenal and spiritual energy fields of caregivers and care recipients influence one another as they expand to create an authentic creative space to support caring, healing, health, the living phenomenon of human experiences, and the evolution of humanity (Clark, 2016; Watson, 2018).
To supplement the caritas processes, which include creative problem solving and multiple ways of knowing, the theory of collaborative decision making in nursing practice for triads explicates two useful concepts that have received limited support: (a) types of decisions and (b) formation of coalitions in decision-making situations (Dalton, 2003, 2005). Dalton (2003, 2005) posits that in collaborative, triadic, decision-making interactions, a coalition of two individuals among the triad can occur to agree on a common strategy to achieve a decision while the third individual can actively or passively resist. Dalton (2003, 2005) postulates that the nature of coalition formation relative to client–caregiver versus nurse, nurse–caregiver versus client, and nurse–client versus caregiver are determined by a pro- or anti-collaborative attitude, which is influenced by contextual, client-related, caregiver-related, or nurse-related factors, and the type of nursing care decision. Agenda decisions encompass activities related to frequency, timing, and time sequencing (i.e., visit frequency). Operational control decisions pertain to the way things are done to handle energy, information, and materials (i.e., activity and fluid in-take), and program decisions involve goals and content of program planning (i.e., diet and psychiatric referral). With a common goal in view, each individual or partner in the triad can collaboratively work through his/her differences in an honest and respectful manner to make decisions, solve problems, and meet the therapeutic care needs of care recipients (Dalton, 2005). With the presentation of a conceptual basis for explaining the phenomenon of grandparents as caregivers to young adult grandchildren, it is crucial that the psychosocial, economic, and health influences on these older caregivers are described.
Upon reaching age 65, older women can expect to live an average of 20.5 more years (USDHHS, 2014). Assumed to be strong, loving attachment figures and supportive sources of comfort (Bowlby & Ainsworth, 1992; Langosch, 2012), grandmother caregivers who decide to have their young adult grandchildren live with them probably do so for the same reasons as other caregivers: parental substance use, abandonment, death, divorce, unemployment, military deployment, or child abuse/neglect (Goulette et al., 2016; Pew Research Center, 2010; USDHHS, 2015). Having young adult grandchildren living in a stable environment where they feel safe and emotionally secure is important to grandmother caregivers. Although one half of grandmother caregivers have at least one of the grandchildren's biological parents living in the same home, these caregivers maintain control and freedom to affirm their grandchildren's value and show the grandchildren that they are worthy of care (Langosch, 2012; Pew Research Center, 2010). Primary grandmother caregivers and their young adult grandchildren respect and trust each other and can verbally or nonverbally communicate their needs through the creation of shared meanings. Co-residence is known to increase the likelihood of daily and frequent interpersonal contacts and further strengthens the emotional attachment bond (Cohen, Cook, Sando, Brown, & Longo, 2017). When these caregivers exhibit psychological feelings of emotional closeness and connectedness with their co-resident young adult grandchildren, care for them, and are responsive to their needs, caregivers' attachment behaviors, value, self-esteem, well-being, and satisfaction are enhanced (Bowlby & Ainsworth, 1992; Goodman, 2012; Sette, Coppola, & Cassibba, 2015).
Physical and Mental Health Influences
Most older grandmother caregivers of young adult grandchildren have at least one chronic health condition (e.g., arthritis, heart disease, cancer), and 25% will experience a significant disability (Pew Research Center, 2013; USDHHS, 2014). These health conditions require daily lifestyle modifications. Black individuals have a higher prevalence of these chronic health conditions and disabilities, and they generally report poorer health than White and Hispanic individuals. Despite their health perceptions, all caregivers must tend to their mental and physical health (Goodman, 2012). Caregivers need to balance their own self-care needs and caregiving responsibilities (Burn & Szoeke, 2015); otherwise, they will not have optimal success in their role as caregivers. For example, the numerous tasks caregivers perform can be stressful. Primary caregivers provide assistance of an average 26.9 hours per week for less than 5 years to young adult care recipients, with at least 1.4 ADLs such as transferring in/out of bed (functional mobility), dressing, feeding, and toileting, and 4.1 common instrumental ADLs (IADLs), including housework, administering medicines (pills or injections), and supervising services. Another 27% of primary informal caregivers have spent more than 40 hours per week helping care recipients, and 19% reported that they have been engaging in caregiving tasks for ≥10 years (AARP & NAC, 2015). Only 12% of informal caregivers reported receiving training on how to perform activities such as injections, tube feedings, or catheter care, whereas 38% are not trained (AARP & NAC, 2015).
Over time, the less attention caregivers give to their own health needs could impact their mental and physical health. Weight loss, weight gain, sleeplessness, being overwhelmed, anger, or fatigue are common symptoms of caregiver stress. Caregiver stress puts individuals at higher risk for poorer health outcomes (USDHHS, 2015). Nevertheless, prior research suggests that older caregivers who provide care regularly to family members and/or friends have fewer days of mental distress and less dissatisfaction with their lives, but they rate their physical health as fair or poor and experience more days of physical distress in the past month compared to non-caregivers (Anderson et al., 2013). More Black caregivers than White caregivers and those with co-resident arrangements report frequent high-intensity care, such as more hours spent assisting with ADLs and IADLs per month and number of years spent caregiving. However, in terms of their quality of life, Black grandmother caregivers are less impacted socially and emotionally than White grandmother caregivers (Cohen et al., 2017).
Older women in general have fewer financial resources from Social Security benefits, personal assets, and private pensions than older men (USDHHS, 2014). Black, Hispanic, and low-income earners have higher rates of poverty and are more likely to experience financial strain as they attempt to care for their grandchildren than White individuals (Cohen et al., 2017; Doley, Bell, Watt, & Simpson, 2015; Goulette et al., 2016). In addition, if there is no legal recognition of the co-residency arrangement, some caregivers are reluctant to obtain governmental assistance for fear of being perceived as being incompetent (Doley et al., 2015). Conversely, legal arrangement with respect to guardianship/custody rights helps caregivers better utilize available health insurance, such as Medicaid, to obtain home- and community-based services for their young adult grandchildren. Eligible individuals can receive care from one of three service categories: mandatory traditional home health care benefit, personal care option, and home/community optional waivers. Recipients of traditional home health care receive mandatory health benefits, which include nursing services, home health aides, medical supplies, appliances, and equipment. Service benefits such as physical therapy, speech therapy, and audiology are optional. The personal health care option has two different service delivery models. The self-directed model allows well-informed recipients to actively direct their own care. If their needs and preferences are not satisfied, recipients can terminate their formal caregivers. In contrast, the recipient-delegated model makes provision for recipients to delegate the task of directing their care to an approved in-home service provider. For community-based services, waivers or the 1915 waivers (i.e., Medicaid home and community-based waivers authorized by Social Security Act, Section 1915(c), which allow states to provide certain long-term care services and supports to specific populations in their homes and community settings), recipients may meet the requirements, but services are available to only a certain number of individuals at a point in time; therefore, services may not be available when needed (National Association for Home Care & Hospice, 2010). Overall, these unique challenges that grandmother caregivers encounter will require education, health, and supportive community services tailored to meet their ongoing needs.
Older primary grandmother caregivers who help their young adult grandchildren need to be fully understood and supported. Nurses, particularly home health nurses, have an ethical covenant with the public to sustain human caring; to honor the living human experiences of self and others; to preserve humanity even when threatened; to attend to and help preserve human dignity; to honor the unity of all; and to hold others in their wholeness (Watson, 2007, 2018). Therefore, nurses should use the important caritas processes. The caritas processes enable nurses to practice and model being nonjudgmental, warm, loving, honest, sensitive, and kind as they develop an understanding of the experiences and challenges faced by sole caregivers of young adult grandchildren. Nurses should be genuinely present, enable, and honor the deep spiritual belief systems and subjective worlds of self/others. As moral agents, these professionals should develop a deep spiritual connection and attendance to the mysterious, existential life–death dimensions by practicing or encouraging any form of spiritual or religious expression of caregivers and those in need of care. By intentionally engaging in caring moments, providing person-centered care, and offering referrals to supportive social systems (e.g., legal aid, respite care, economic agencies, faith-based support groups, social services, counseling, the AARP), nurses are able to create an authentic, trusting, and healing physical and non-physical space that fosters wholeness, dignity, comfort, and acceptance of positive and negative feelings. Building trust takes time; therefore, nurses should give primary grandmother caregivers and care recipients time to adjust. In addition, nurses should be advocates, creative artists, problem solvers, and helpers who use all the ways of knowing, being, and doing to educate these informal caregivers about self-care/preventive health care, engage in caring and healing practices, and proactively meet the basic needs of care recipients (Watson, 2007, 2018).
The phenomenon of older grandmothers serving as primary caregivers to their young adult grandchildren is a real living human experience, and it is occurring today in the shadows of our community. Because this uncommon phenomenon is not fully acknowledged or explored, the current article attempts to shed light on it. Research that examines the lived experiences of primary grandmother caregivers of young adult grandchildren is needed. The knowledge gained could be used to better inform health providers as they make decisions, plan interventions, and take appropriate actions to support these older primary caregivers.
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