Framework for Preparing Families and Residents to Direct “Person-Directed” Care in Nursing Homes

Purpose: Galvanized by pervasive quality of care and quality of life concerns (OIG 2014), the nursing home culture-change movement aims to transform nursing homes from institutionalized, medicalized models of care to person-directed, home-like settings (Zimmerman, Shier & Saliba 2014 ). Person-directed care entails empowering older adults and their families to be active participants in care planning and assessment processes and decisions.  Emerging research indicates higher quality outcomes and decreased costs when older adults and their family members actively engage in these processes, especially among residents with dementia or those at the end of life (Oliver et al, 2014; Phillips et al, 2013).  However, of the estimated 85% of U.S. nursing homes engaged in some aspect of culture change (Miller, Looze, Shield, Clark, Lepore, et al., 2014), many implement environmental modifications rather than transforming staff relationships with residents and families for improved engagement and participation (Lepore et al., 2015). This selective uptake of culture change may exacerbate healthcare disparities for those older adults already at increased risk of poorer quality care, especially ethnic and racial minorities who are more likely to be long-stay, Medicaid-funded residents in nursing homes with poorer overall quality (Mor et al., 2004).  Consequently, approaches are needed to facilitate family and residents’ ability to direct their care in nursing homes.  The purpose of this paper is to describe strategies derived from the Adaptive Leadership Framework for Chronic Illness (Anderson, Bailey, Wu, Corazzini, McConnell, Thygeson, Docherty, 2014) for developing residents’ and family members’ skills for engaging in the care planning process, focusing on residents at highest risk for health disparities, including long-stay, Medicaid-funded ethnic/racial minority older adults and their families. 

Methods: We used the adaptive leadership framework to propose strategies for residents and family members to gain skills for effective engagement and directing “person-directed” care.  The strategies assists families and residents to collaborate in identifying and addressing adaptive challenges that residents face in daily life, and it prepares residents/families to define and guide the adaptive work necessary to improve health and well-being. 

Results: This framework explicitly acknowledges the adaptive work that individuals must do for themselves in chronic illness and emphasizes a real need for interventions that increase residents’/families’ ability to tackle difficult problems.  Care situations have two types of challenges, technical and adaptive, and likely have some combination of both types of challenges.  To describe these types of challenges, we use the example of oral hygiene.  Technical challenges are situations in which both the problems and the potential solutions can be clearly defined; this does not mean these problems are easy to resolve, merely that known solutions exist.  An common technical challenge is the potential for poorer performance, lower quality, and less thoroughness of toothbrushing that might occur in residents with cognitive decline.  This challenge can be addressed using technical work such as assessment and standard oral hygiene instructions using existing best practice guidelines. However, if a resident has cognitive changes, standard instruction is likely not sufficient to improve oral hygiene care and thus, what might otherwise be a technical problem, now will have aspects that are adaptive challenges.  Adaptive challenges occur in situations in which problems are more difficult to specify and are easy to deny, require changes in values and beliefs, and require changes in behavior.  Common adaptive challenges in oral hygiene might be motivation, low self-efficacy, and forgetfulness.  Adaptive challenges require adaptive work, for example, changing attitudes toward oral health, and/or adapting oral hygiene skills to address problems that arise from cognitive changes. 

Nursing home staff might use a technical approach when adaptive work by the resident or family would be optimal for better resident outcomes, in part because providers do not have access to evidence to guide them in assessing adaptive challenges or interventions to facilitate residents’ adaptive work (Thygeson, Morrissey, and Ulstad, 2010).  Thus, nursing home staff also will face adaptive challenges and work as they learn to support residents in accomplishing daily care.  Adaptive leaders help to distinguish technical and adaptive challenges and foster the ability of others to address their adaptive challenges and do the related adaptive work.  Thus in the nursing home context, residents/families adaptive leadership roles might focus on helping care staff to identify and address the challenges faced by residents in their daily lives.  Exercising adaptive leadership, residents/families encourage care staff to develop adaptive approaches (e.g., cueing and reminding strategies, and behavioral strategies) to improve the residents’ independence in daily care. Exercising adaptive leadership requires collaborative work in which the residents/families will monitor symptoms and associated behavioral responses that might interfere with independence in activities of daily living (e.g., forgetting, concentration to complete task); these are the adaptive challenges.  Also as part of collaborative work, the family members will encourage the resident to share information so that the care team (including residents/families) develops a shared understanding of the particular challenges that the resident faces using tested communication intervention approaches.  With a common understanding the care team can employ adaptive approaches and work with the resident/family to develop individualized, adaptive approaches (e.g co-produce the care plan) that the resident uses to accomplish adaptive work of self-care, as an example.

Additional barriers to person-directed care arise for some groups of residents that might contribute to health disparities.  For example, in the United States, minority populations are disproportionately impacted by chronic illness (Centers for Disease Control and Prevention, 2011) and thus minority residents disproportionally have cognitive and affective symptoms that accompany chronic illness.  These conditions will impact their ability to clearly convey concerns or communicate easily with care staff, potentially reducing their engagement in care planning.  Also, providers lack evidenced-based approaches tailored to help residents address challenges due to cognitive/affective changes.  Nursing home staff might assume that residents with cognitive/affective changes lack the capacity to participate as partners in care decisions, and might be more likely to “do to” rather than to help such residents to adapt and optimally participate in managing their daily care.  Furthermore, families of minorities might have lower education and experience for engaging with clinicians, but with skill development in these areas they are quite capable of identifying their family member’s adaptive challenges and guiding the nursing home care team to address them.

Conclusion: The Adaptive Leadership Framework for Chronic Illness identifies multiple points in the care planning process to engage families and residents, to facilitate differentiation between adaptive and technical challenges, and to co-create new ways of providing care. Further, the framework informs intervention development and testing.