Older Women Discuss Planning for Future Care Needs: An Explanatory Framework.

529330 research-article2014

JAHXXX10.1177/0898264314529330Journal of Aging and HealthGirling and Morgan

Article

Older Women Discuss Planning for Future Care Needs: An Explanatory Framework

Journal of Aging and Health 2014, Vol. 26(5) 724–749 © The Author(s) 2014 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/0898264314529330 jah.sagepub.com

Laura M. Girling, MS1 and Leslie A. Morgan, PhD1

Abstract Objective: This study expands upon existing narrative data concerning health care preparation by developing a multi-theme framework of plans for future care needs. Method: Inductive content analysis was conducted on 185 interviews with European American and African American older women. Results: An explanatory framework emerged of five themes, describing varied approaches to planning for future care needs: (a) Autonomous Care Planners, (b) Externally Reliant Planners, (c) Aware of Preference, (d) Wishful Thinkers, and (e) Avoidant. A distinct group included women performing only end-of-life planning. Barriers to planning included low-perceived vulnerability, financial constraints, being uninformed of needed actions, and fear of burdening. Discussion: Although the majority undertook active steps to prepare for future care needs, many missed key steps or achievement of planning goals recommended by experts. Findings may be applied to longterm care planning research by providing added, rich detail on how aging women construct their options, make choices, and address this important area for future well-being. Keywords long-term care, aging, future care planning, qualitative

1University

of Maryland, Baltimore County, USA

Corresponding Author: Laura M. Girling, MS, Center for Aging Studies, University of Maryland, Baltimore County, 1000 Hilltop Circle, Baltimore, MD 21250, USA. Email: [email protected]

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Anticipating and preparing for health and personal care needs in advanced old age are widely advocated by public and private experts (Kemper, Komisar, & Alecxih, 2005; Stone & Weiner, 2001), and deemed to support well-being in older adults who complete such planning (Pinquart & Sorensen, 2002b). A variety of outcomes have been used to evaluate planning for future health and end-of life (EOL) needs; studies include an array of criteria for these types of planning, such as awareness of potential care needs, discussion of preferences with close others, gathering information on options, forming explicit preferences (e.g., family care or location/type of formal care), designating a health care power of attorney/decision maker, completion of an advance directive, purchase of long-term care (LTC) insurance, or moving to a continuing care retirement community (CCRC), guaranteeing future care (Carr & Khodyakov, 2007; Cramer & Jensen, 2006; Gerst & Burr, 2008; Ha & Pai, 2012; Hopp, 2000; Sheehan, 1995; Sorensen, Duberstein, Chapman, Lyness, & Pinquart, 2008). Theoretical perspectives, as well as various assessment scales, have been developed to evaluate progression from having not thought about care needs to having completed one or more planning steps (Fried, Bullock, Iannone, & O’Leary, 2009; Fried et al., 2010; Mak & Sorensen, 2012; Sorensen et al., 2008; Sorensen & Pinquart, 2001). These items include two types: those relating to EOL care and those relating to care needed due to dependency prior to EOL. Although literature often blends the two, in this article, we focus on individuals’ descriptions of their actions to plan for future dependency requiring assistance rather than living will or designation of a health proxy, which we consider EOL planning and discuss more briefly. The present study explores the experiences and perceptions of older women regarding their plans for future care needs, as well as examines relationships of developed themes in relation to select variables identified in prior literature as pertinent to health care planning. Narratives from interviews with older women provide a deeper and more nuanced understanding of participants’ actions relating to health planning. Findings from the current study (a) provide insights into how older women describe their planning for health care needs, (b) help uncover barriers they identify as linked to failure to plan, and (c) further inform knowledge regarding planning in later life.

Literature Review Given growing numbers of aging persons facing potential health or LTC needs, concerns have been raised regarding both the demands on the health and LTC systems, as well as fiscal impacts on U.S. entitlement programs (Martin, Freedman, Schoeni, & Andreski, 2009; Olshansky, Goldman, Zheng,


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& Rowe, 2009; Soldo, Mitchell, Tfaily, & McCabe, 2006). Consequently, it is increasingly important to evaluate how aging individuals think about and decide to undertake or avoid planning for future decline in physical, mental, or cognitive health. Existing literature has shown that planning behaviors can vary based on sociodemographic, personality, psychological, and experiential factors. Both future care and EOL research demonstrate links between planning behaviors and several sociodemographic characteristics (Cramer & Jensen, 2006; Mak & Sorensen, 2012; Temple & Cockley, 2012). Planning for both health needs and EOL care has been shown to be higher among White adults, women, those with greater income/wealth, higher education, and the married; however, the findings are somewhat mixed, and causation typically cannot be attributed due to cross-sectional designs (Carr & Khodyakov, 2007; Gerst & Burr, 2008; Ha & Pai, 2012; Mitchell, Mathews, & Hack, 2000; Petkoska & Earl, 2009; Sorensen & Pinquart, 2000). Comparing older adults from the United States and Germany, Sorensen and Pinquart (2000) reported that higher ages, as well as higher socioeconomic status for U.S. participants only, correlated with greater planning for both short- and long-term health needs as well as having more activities of daily living (ADL) limitations. However, although greater age is generally linked to more planning, Hopp (2000) reported that in her sample of persons age 70+ who had identified someone they would trust to make health decisions, fewer than half had discussed their care preferences with that person. Studies also indicate associations of planning in relation to personality traits and psychological states. For example, two studies (Ha & Pai, 2012; Sorensen et al., 2008) found that select personality traits (openness, agreeableness, or neuroticism) were related to awareness of future health care needs or informal planning but not to taking formal planning steps. A study of both financial and health planning by older adults suggested that being fatalistic may negatively influence preparation for future needs (Petkoska & Earl, 2009). Beyond personality traits, several other psychological factors, particularly depression and anxiety, have been associated with care planning. A study by Pinquart and Sorensen (2002b) found that those more aware of future care needs are more anxious and depressed, yet they are not more likely to formally plan. In examining psychological outcomes associated with three behaviors related to care planning (avoidance, thinking about risks without planning, and concrete planning), Pinquart and Sorensen reported that avoiders were the lowest on worry and depression, but those “thinking about” future needs without acting had the lowest overall psychological well-being. Yan, Silverstein, and Wilbur (2011) suggest that Baby Boomers with anxiety-laden views of their aging avoided planning for


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feared, future care needs. This sample’s greatest area of anxiety was potential loss of independence, deriving from declining health or cognition (Silverstein & Abramson, 2008). These authors suggest that, while moderate levels of anxiety may motivate planning, excessive anxiety may prevent planning. In contrast, Fowler and Fisher (2009) reported that anxiety about the future increased both awareness and planning for health needs among adult children and their parents. Although evidence is somewhat mixed on several of these predictors, Pinquart and Sorensen (2002a, 2000) suggest that either anxiety regarding future health decline or uncertainties about the risk or extent of those needs may lead to planning avoidance, even among those with the resources needed to make concrete action. Accordingly, psychological factors may play a considerable role in decisions and attitudes toward planning for future care. Personal experiences have also been shown to play a role in planning behaviors. Individuals who recently experienced a loved one’s painful death were more likely than those without this particular experience to engage in EOL planning (Carr & Khodyakov, 2007). It was suggested that witnessing a loved one’s suffering could motivate planning in the hope of evading a similar fate. Beyond just the experience of a loved one’s death, the location at death appears to influence planning. In Carr’s (2012) study, witnessing a significant other’s death at home was associated with a greater discussion of EOL preferences and completion of advanced care plans compared with those who witnessed their loved one’s death in an institutional setting. However, encountering similar experiences does not appear to influence planning in terms of purchasing LTC insurance. For example, Cramer and Jensen (2006) found that having a parent either endure a lengthy illness before death or live in a nursing home before death did not influence an individual’s decision to purchase LTC insurance. In addition to experiences involving death, encountering scenarios where risk of needing future care is elevated also appears to be associated with planning behaviors. For example, individuals with a first degree relatives with Alzheimer’s disease were more likely to collect information on care options but lacked the motivation to actively make care plans (Mak & Sorensen, 2012). Other studies of individuals with elevated risk for future care needs (e.g., persons diagnosed as “early stage” dementia or homebound elders) confirmed continuing resistance to planning for care needs despite high risk; they more often had made EOL arrangements (i.e., funeral) than plans for their health needs prior to death (Carrese, Mullaney, Faden, & Finucane, 2002; de Boer, Droes, Jonker, Eefsting, & Hertogh, 2012). Accordingly, it appears that awareness of likely need for care in the future does not itself result in taking concrete steps.


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Although preparing for health care needs is advocated by experts and supports well-being in such planners, many factors can impede the planning process (Kemper et al., 2005; Pinquart & Sorensen, 2002b; Stone & Weiner, 2001). Preparing for any aspect of later life may be constrained by aging’s devalued status in our culture (Street & Desai, 2011), as well as the practical barriers faced by disadvantaged individuals, whose limited resources constrain some recommended planning steps despite personal preferences (e.g., buying LTC insurance, building retirement savings; Kemp, Rosenthal, & Denton, 2005; Sorensen & Pinquart, 2000). Some researchers suggest that widespread misunderstanding of program provisions (e.g., believing that health insurance, medi-gap insurance, or Medicare cover LTC) prompts many to forgo planning for future care (AARP, 2006). Similarly, Schickedanz and colleagues (2009) identified six domains of barriers (e.g., personal, relational, informational) to advance care planning that may deter active planning and preparation. The authors suggest that identification of barriers that prevent planning could assist in developing interventions aimed at improving older adult’s engagement in the advance care planning process. Although we know a good deal about who plans or does not plan for future care needs, we understand less about the reasoning of individuals making these decisions (Pinquart & Sorensen, 2002a). Although researchers have used and advocated for greater use of qualitative research to gain deeper understanding of individuals’ decisions regarding future care planning (Pinquart & Sorensen, 2002a; Stoller, 1982), there is limited qualitative research to date (Carrese et al., 2002; de Boer et al., 2012). In this limited literature, there have been several small yet noteworthy investigations. For example, a qualitative study of 20 individuals from a low-income urban area indicated that, although most participants had arranged their funerals, the majority (16) actively resisted talking or thinking about future serious illnesses (Carrese et al., 2002). Likewise, qualitative interviews with unmarried women in three countries identified (a) difficulty in anticipating care needs, (b) absence of resources necessary for planning, and (c) low-perceived vulnerability as the most prominent barriers to planning (Pinquart & Sorensen, 2002a, 2002b). In 2009, Malcomson and Bisbee conducted a small qualitative analysis (n = 20, 75% women) that focused on healthy elders’ outlooks on advance care planning. Content analysis revealed five major themes: (a) advance care planning is affected by concern for others, (b) elders assume that preferences are known to trusted individuals, (c) elders value health care systems that encourage continuity, (d) being “known” to a provider is associated with a sense that advance planning preferences will be honored, and (e) elders are typically willing to discuss advanced care planning. These studies collectively provide data on small or specialized samples (e.g., de Boer


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and colleagues studied those in early Alzheimer’s disease) and include limited narrative reflecting the voices of the older adults, including their nuanced statements relating to health planning. The primary purpose of this study is to expand upon the limited, qualitative information on the thinking of older persons by drawing on narratives from interviews with 185 older women age 64 to 98 regarding their expectations and behaviors concerning future health care needs.

Method Sampling and Participants The sample was selected from a larger project titled “Generativity and Lifestyles of Childless Older Women,” which used a phenomenological approach (Creswell, 1998) necessary to examine the lived experiences and meanings of generativity among older women. Exclusion criteria include male gender, younger than 58 years of age, and factors that would preclude a meaningful interview (cognitive impairment, profound hearing loss, and language barriers). To examine a variety of elderly women, the parent project used purposive sampling, primarily through community outreach. Based on the study design, sampling focused on women without children (n = 151, 76%) but included subsamples of women with biological children (n = 41, 20%) and women with non-biological children (n = 8, 4%). A purposive distribution of European American (n = 116, 58%) and African American (n = 84, 42%) women with an overall mean sample age of 75.21(±8.2) was developed, as well as a purposive distribution of married (n = 42, 21%), never married (n = 54, 27%), divorced (n = 44, 22%), and widowed (n = 60, 30%) informants. For this article, analyses were conducted on the narratives of the 185 women age 64 years or older who discussed their future health care planning. The 15 participants excluded from the larger sample were either younger than 64 (n = 2), did not answer questions or discuss plans for future care during the three interviews (n = 4), or answered questions only in terms of EOL planning (i.e., advanced directives or funerals; n = 9). Although these nine informants were not included in the thematic analysis (as it is beyond this article’s focus), they will be briefly discussed in a section on EOL Planners. The resulting sample of 185 women did not substantially differ from the overall sample, in terms of a mean age of 75.45 (±8.1), racial composition (European American, 58%; African American, 42%), percentages of women without children (76%), with biological children (21%) and non-biological children (3%), as well as marital status (21% married, 26% never married, 22% divorced, and 31% widowed).


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Data Collection Three, weekly, semi-structured, in-person interviews were conducted in each participant’s home or setting of choice in the mid-Atlantic region of the United States. Each interview lasted between 60 and 90 min and was digitally recorded and transcribed verbatim. The interview guide included several questions on future care plans, expected care needs, and care arrangements. Informants provided a life history relating to marital status and childbearing or rearing, ethnicity, careers and familial relationships, and their accomplishments and challenges during their lives. Each informant was also asked to rate her current health as excellent, good, fair, or poor. Transcribed and deidentified interviews were formatted into ATLAS.ti (Muhr, 2008) for analysis. All names and locations were changed to protect the identity of informants under a protocol approved by the Institutional Review Board at the University of Maryland, Baltimore County.

Data Analysis Analysis began by retrieving answers relating to questions on future care needs and planning behavior for all eligible participants. Narrative examination initially focused on five key questions within these lengthy interviews relating to future care: (a) Have you made any plans for any care you might need in the future? What are they? (b) Is there anyone who will help you with caregiving needs? (c) In the past few years, have you ever felt that there is no one who would take care of you, if need be? (d) Financially, will you have enough to see you through the next few years? (e) Given your life at the present time, what do you believe are future options for you? However, the breadth of health care planning discussion went beyond responses to these five questions. Therefore, to understand the full context of responses on planning, as a second step, each participant’s third interview was read in its entirety by the lead author, as health care was a particular focus of questioning during this interview. Third, keyword searches were conducted to identify planning dialogue occurring in earlier interviews, particularly among those who had not provided any planning data during the third interview. The key search terms included planning, future care, caretaking/giving, LTC, finances, and benefits. As pertinent health care responses were identified in the first and second interviews, those narratives were also read in their entirety to provide a better context of each informant’s planning behaviors. Once the relevant narrative responses were identified, they were examined for common meanings and themes to develop an explanatory framework for how women described preparing for future care needs. First, the 185 transcripts


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were analyzed using inductive content analysis (Elo & Kyngäs, 2008). Responses to the five questions and other relevant discussion on future care planning were open coded for initial themes. To enhance the quality of the findings, data were analyzed by collaborative coding between the two authors, where interpretations of future care planning behaviors and associated barriers were constantly checked against the text, the context, prior elucidations, and across authors’ interpretations. Rather than quantifying differences between investigators, differences were explored to reach a truly collaborative consensus on understanding the data. After initial analyses, preliminary codes were subsequently reevaluated, distilled into several subcategories, and then condensed into five main categories. Responses that fell into more than one of these five categories were allocated to the group representing a more extensive degree of planning. The analytic steps, refining the emerging categories, were repeated through several rounds until a final thematic consensus was reached between investigators. Although the primary objective of this article is to describe an explanatory framework of health care planning, analyses also included the examination of potential relationships between the developed themes and variables that prior literature suggests may enable or constrain health care planning. These variables included self-reported health, parental status, marital status/history, race, and age. For purpose of analysis, age was collapsed into a categorical variable. Pearson chi square was used to determine whether bivariate associations existed between the aforementioned variables and the placement of study participants within the five future care planning themes. Data were analyzed using SPSS Version 19.

Findings The content analyses revealed an explanatory framework consisting of five core themes regarding planning for future health care, in some cases, including participants’ rationales for their action (or inaction) to date. Chi-square tests showed that the planning categories were unassociated with four of the five variables we examined (self-reported health, parental status, marital status, race, age). The one exception involved those fitting the Autonomous Care Planner theme, described further below. An association was found between race and a participant’s placement in this thematic group, χ2(4, n = 185) = 30.32, p = .000, with about 84% (52 of 62) of those in the Autonomous Care Planner theme category identifying as European American. Although racial differences in the Autonomous Care group were the only statistically significant association found in this analysis relating to the five planning themes and the five sociodemographic variables, further examination of


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barriers to planning also revealed qualitative differences by race, discussed below in the “Barriers” section. The following section describes the explanatory framework, consisting of five themes ranging across a continuum of approaches to care planning, which can be broadly divided into tactics of planning and non-planning. Quotes were selected as exemplars of each of the five themes, portraying the nuanced statements relating to differing degrees of health care planning.

Autonomous Care Planners (n = 62) First among those planning were women categorized as Autonomous Care Planners, including those who had (a) purchased LTC insurance or (b) moved into a CCRC with a contract guaranteeing continuing care. These planners told us that they had taken active steps to prepare for their future care needs, which were in accordance with standard recommendations of planning experts. Among the Autonomous Care Planners, many discussed the purchase of LTC insurance as a means to manage potential health needs. For example, when discussing their plans for care in the future, two informants acknowledged, My husband and I, early on when it was first available, we got something called long-term care insurance. Because unfortunately, the care in the future is not just hands-on type care, it becomes very financial. We were able to purchase the long-term care insurance, we did it when we were much younger and it was very affordable then. Family may have good intentions as far as taking care of you, but the reality is it’s all very expensive. (Michele, European American, 65) I’ve got Long-Term Care Insurance. It [future care] doesn’t worry me. (Eileen, European American, 71)

As seen in Michele’s response, many of the Autonomous Care Planners viewed LTC insurance as a proactive approach to protecting themselves from the physical and financial burdens associated with potential declining health. Preemptive planning for future care needs, most specifically in the form of obtaining LTC insurance, offered a sense of security about the future. This is particularly evident in Eileen’s simple yet noteworthy statement that her LTC insurance policy relieves the worry of anticipated care needs. Similarly, many of the planners stated that their CCRC contracts offered assurance that future care needs would be met. When asked who will help with her care needs, one informant remarked, That’s why I’m here, because they’ll take care of me. No matter, even if you’re in long-term care, you can be here; so that’s one of the reasons I came, because


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I wouldn’t have really had anyone to take care of me particularly . . . that’s what contract with Meadow Village [CCRC] is all about. (Mary, European American, 87)

In her discussion about future care, Mary clearly viewed her agreement with her CCRC as a method of personally ensuring that her needs would be met, regardless of her health status. Like those who purchased LTC insurance, women who established a contract with a CCRC guaranteeing progression of care felt confident that, as they aged, their health care would be properly handled. Among the Autonomous Care Planners, the narrative data suggest preemptive health care planning provides not only a sense of security but also tangible assurance that future needs will be met.

Externally Reliant Planners (n = 64) Also, among those planning, Externally Reliant Planners had taken more limited action to plan for future care, but instead of self-reliance, they counted on others to meet health needs, should they arise. Those informants categorized as Externally Reliant Planners (a) had discussed care options with potential providers and expressed certainty that named individuals would provide their care or (b) had, through military service, lifelong participation in a religious order, or receiving U.S. political asylum, become eligible for LTC coverage. Although there were provisions in place, such as in the case of women of religious vocations, the women themselves had not needed to undertake specific planning steps or other actions for this eligibility to occur. Instead, the affiliated organization undertook planning to ensure future needs would be met; thus, these women were considered to be reliant on external sources. Despite taking a less active role, these women had also achieved the goals of care planning, albeit through alternative means. Many of the Externally Reliant Planners discussed family and/or friends as the primary resource for future health support. For example, when asked whether they made any plans for care in the future, two informants stated, No, because I’ve had cousins who’ve fortunately said they would always be there for me. Even take me into their home, if necessary. So I don’t have that fear of being alone or someone not having anyone. And Lillian [family friend] will always take care of me. (Elizabeth, African American, 65) No. Because our family is a family of taking care of one another, and we have shown our children, that, my parents’ example to me was to take care of my grandmother in my father’s house. So, and then one of my cousins and I, we were there for Aunt May. So this is something that’s in our families. We didn’t


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have the luxury or the money of putting loved ones in nursing homes or places, in fact, we didn’t want to. That was the bad place; that was not the way we wanted our family to end up . . . But our example, what our children have always seen, is that we take care of family . . . The ones who offer themselves [as care providers], and I can tell you right now Carolyn [Niece] will be right there, Carolyn would be right there, you know and I have Sally [Niece] and another niece, but my brother’s and sister’s children would not see me in need whether I had income or not . . . I believe that I’ve been granted, where I have, several nieces who are going to be there for me and, but also fortunate enough to have friends who we will see to each other, but I also have my church family . . . I have spiritual friends who [say], I’m going to be your driver, you’re going to see to me getting to the doctors or you’re going to be concerned about a phone call. And I have a husband, so, to me, I have the world. (Ellen, African American, 65)

Throughout Elizabeth’s interview, she expressed the importance of family caretaking and her continued discussion with family about their roles in her future care. Conversations about care, in combination with familial assurance of support in later life, offered Elizabeth peace of mind as she ages. Similarly, Ellen described her family as the pivotal means of receiving care in the future, as well as her preference. She explained that discussion with her nieces as well as examples of prior generation’s caretaking for their elders greatly shaped the method of care she will receive in later life. Like generations before, Ellen knows that her family will always provide physical and financial support. In light of this assurance, she expects to never need institutional support. In addition to support from relatives, Ellen also noted that her religious community will provide care as she ages. Discussion with religious group members has assured Ellen of support from this religious family. This subtheme was observed among many of the African American women in this category. Other Externally Reliant women discussed how organizations would finance or provide health services for the remainder of their lives. This was frequently articulated among those of religious vocations. For example, Sister Veronica stated, I know I will be taken care of for the rest of my life. I don’t have to worry about whether I’m going to have food, clothing or shelter, I know, it may not be what I want but I know I will be cared for so, it’s a great consolation to me to know that I have given the best I could all my life and my community will care for me at this point. So I don’t think it’s any one person, I think it’s the fact that, I am consoled with the fact that my community will care for me . . . Financially, that’s not my worry. That’s the community’s worry. (African American, 84)


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Sister Veronica, in addition to both the European American and African American women of religious vocations, consistently expressed that an advantage of devoting their lives to a religious community was the assurance that their health needs in later years would be provided for by that same community. As specifically seen in Sister Veronica’s response, having guaranteed community-based care provided a great deal of comfort and peace of mind, because the physical, mental, and financial obligations she may experience will be wholly undertaken by her religious community. Accordingly, this guaranteed community-based care, offered to those of religious vocations, provided these women with little need to autonomously prepare for health care needs. In addition, a portion of the sample relied on benefits provided to retired military personnel. Although traditionally not associated with women, CCRCs financed through the Veterans Administration (VA) offered an important source of external support for those with a military career. When asked whether she had made plans for future care, Olivia notes, No, that’s why I came here [VA CCRC]. That’s why I came here. And that’s why I’m not going to leave, because I said I’ve left three times now; and I said no, you know, I’m not going to do it again. They have aging in place now, which is new, just a couple months now. And then they have assisted living and then they have the hospital and otherwise, if they don’t have room, they’d farm me out to a nursing home wherever on the outside. (European American, 89)

Although noting she had not herself made any plans for care, Olivia asserted that her needs will be attended to as long as she remains at the CCRC provided through her military benefits. Like women of religious vocations, those with military benefits acknowledged that their personal preparation for future care was limited because LTC demands were directly addressed and provided through their military affiliation. As a whole, the Externally Reliant women’s descriptions of health care planning suggest that a notable number of participants rely heavily on peripheral sources, particularly family and organizations, to accommodate future health care requirements.

Aware of Preference (n = 37) Becoming aware of one’s preferences is sometimes identified as a key step prior to taking actions to plan for future care needs but does not actually rise to the level of planning. This smaller category included women who had not acted in any way to arrange future health care needs, but, nonetheless expressed a preferred means or location for health care delivery, should the


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need arise. In particular, those categorized in the Aware of Preference group either conveyed a desire to (a) rely on specific informal caregivers, (b) go into a LTC facility to avoid being a burden or to circumvent living with family, or (c) rely on God to provide for future health care. One frequently voiced goal within this group was the desire to have a friend or family member care for them. However, this option was only their preference and had not necessarily been discussed with any prospective caretakers they named. An example of this pattern appears within Amanda’s response to future care plans: Well, hopefully, I’m hoping my daughter Melissa will be here for me. She’s seen me give care to her father, her sister, her husband. She’s seen me do all of that. She’s heard me give care over the phone to other people, to her children, and to her; so I’m hoping on her, but if it’s too much of a strain, I’m not going to really worry about that if it doesn’t come to be her. She has a life to live, you know; she may be sick herself, so I can’t put that on her, that it’s got to be her. I can’t do that. But I would hope so. (African American, 65)

Although Amanda has neither actively planned for her care needs nor discussed care options with her daughter, she expressed a clear preference to be cared for by family and relied upon her own modeling of that behavior to lead to the desired result. As seen in many of the interviews of those categorized as Aware of Preference, reluctance to discuss their desire for caretaking with their relatives or friends was, in part, because they did not want to burden relatives or presume their relatives’ willingness to assume a caregiving role. In addition to reliance on informal caregivers, another dimension of the Aware of Preference theme was a wish to enter a LTC facility to circumvent either living with or burdening family members. Although these individuals expressed a very specific preference to enter a LTC facility in their interviews, they gave no indication of having initiated any strategy to achieve this goal (e.g., looking at options, financing, or discussing with others). When the interviewer inquired about her lack of future care plans, Gertrude stated, I have thought about that, and I realize there will be a time when I can’t do things for myself. I just felt, I’ll go in a nursing home. I wouldn’t put myself on any of my nieces; I wouldn’t do that. I wouldn’t. I wouldn’t ask them to take care of me or anything . . . that’s my decision and I wouldn’t do that to them. I wouldn’t tie their life up. I saw what their mother went through. (European American, 83)

Although Gertrude has not begun the basic steps to prepare for future transition into a LTC facility, she discussed her desire to be placed in a nursing home


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to avoid being a burden on her family, indicating instead what she does not want to happen. Witnessing the burden her nieces faced as they played the role of caretaker to their mother strongly affected Gertrude’s goal to avoid burdening her family and, consequently, shaped her preference to move into a LTC facility. As seen in Gertrude’s narrative, as well as the rest of the Aware of Preference subgroup, despite their lack of planning for future health care, these women showed a clear preference in terms of their aspirational direction of care. Although a majority of the comments in this category focused on hopedfor reliance of family members or a preference to relocate into a LTC facility, a small proportion of those classified into the Aware of Preference group described how they relied upon God to provide any necessary options for their future health care needs. For example, when asked whether she had made plans for future care, Cynthia remarked, Yeah, God will take care of me. That is my only plan. As far as any human on this earth, I am clueless. I have no clue. I have no plan, because I told you about my family, they, they’re all, you know, off in their little world. They don’t care anything about, they’re disconnected from the elder, you know, they don’t understand. (African American, 66)

Although Cynthia has not formulated a plan, she very clearly expressed that she is unable to rely on family and that her provider and source of reassurance in later life will be through God. Although it is uncertain whether God will indeed provide for Cynthia, she consistently expressed that, instead of actively establishing a method of care, she preferred to leave her future in God’s hands. Overall, the Aware of Preference group’s descriptions of health care planning suggest that although these women have not actively planned for future care needs, they have a clear preference that family, an institution, or God will accommodate future health care demands on their behalf, without the need of additional actions by them.

Wishful Thinkers (n = 12) A second group of non-planners, Wishful Thinkers, were classified as those who had not planned for future health care needs but nonetheless expressed a wishful desire for positive outcomes. This group is distinct, because these wishes will, in a number of cases, not be realized. In particular, these women expressed a singular wish that care would never be needed. Most informants in this category stated that they had not made plans because they hoped they would never need health services as they progressed in age. This theme is evident particularly in responses to questions about preparation for potential health care:


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I don’t think I want to live with none of ‘em [family] though, because I got my own ways. I hope I can live until, I’ll be able to take care of myself until I die, that’s the way I want to do . . . I don’t want to be a burden to anybody. I want to be for myself doing, because I can do anything for myself now. (Jessica, African American, 82) No, I have not made that. And that has, you know, that concerns me that I have not made those plans. I want to just go out in a heartbeat, and that’s my own personal hope and desire; and I have to sit down and say, OK, if that doesn’t happen, then what? Because, I don’t want to be a burden on someone . . . I’d like to live independently to my last minute and drop dead. (Edwina, European American, 65)

The above quotes demonstrate a wishful approach to facing prospective health problems that conforms to notions of being able to “successfully age” by escaping frailty or dependency on others. While some needs in later life, such as financial needs, are certain, need for care is less certain. Wishful Thinkers are holding on to the chance of escaping any need for care. When looking at this subgroup as a whole, women categorized as Wishful Thinkers expressed a longing for a future that would not require any action relating to health needs rather than considering and preemptively establishing potential care options.

Avoidant (n = 10) Avoidant women, our third group of non-planners, included those who, in their interview responses, (a) made statements indicating a refusal to think about future health care needs or (b) indicated they would commit suicide if a time arose when they required care. Most of those classified as Avoidant attributed their lack of planning to the sensitive nature of the issue. When describing her choice not to plan for potential health problems, Kathleen stated, I have no long-term care insurance. I don’t have, I don’t have anyone. I’m having to deal with resentment; and again it’s something that I don’t really know how to deal with . . . I don’t want to plan for it, I know it’s coming but, you know, it’s like not looking up there and seeing those cobwebs, because I can’t get to them anyway. So I don’t look up there. (European American, 71)

Here, Kathleen chooses to actively avoid preparing for a very likely future that will require health care support. Like the cobwebs on the ceiling, Kathleen feels that desirable health options are out of reach and that she has little control of the direction of her future health care.


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Given the potential for health decline, two of the Avoiders, Leena and Patricia, revealed that their strategy to manage care needs involved committing suicide. After discussing their lack of future care options, one of the informants stated, Oh, I would kill myself, I mean, all I do is hear about these places. But, I don’t want to be a burden on anybody, not at all. And whatever presents, that’s, whatever is going to stop that, that’s what I want. (Leena, European American, 85)

Although only two of the Avoiders expressed suicide as an approach to handle potential care needs, it remains a significant element of the overall narrative. Both of these informants described their current health status as either good or excellent, had no reported history of psychiatric illness, and described their mood as “good.” Accordingly, it is likely that Leena and Patricia’s responses indicate a value system that is notably negative toward care and dependency, seemingly demonstrating an extremely high level of avoidance, as opposed to an underlying mental health condition.

EOL Planners (n = 9) Although not included in the larger thematic analysis, as their answers only addressed strategies to manage EOL rather than earlier health care needs, a brief depiction of the EOL Planners group is appropriate here. In light of the secondary nature of this analysis, it was not determinable whether the informants in this group simply misunderstood our question as asking about EOL planning rather than health care planning, preferred not to think/speak about the possibility of dependency, or had some other rationale for only providing information about EOL. Nonetheless, many of the EOL Planners responded with discussion of advance health directives for EOL or preparation of their own funeral arrangements as a substitute for any response relating to planning for future health care. Furthermore, many acknowledged that EOL arrangements will be of little, if any, assistance during a period of sickness prior to death.

Barriers to Planning Although most of the informants established concrete strategies for managing future care needs (planners: Planners for Autonomous Care and Externally Reliant Planners, n = 126), those who had not planned (non-planners: Aware of Preference, Wishful Thinkers, and Avoiders, n = 59) described several


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barriers impeding the establishment of care provisions. The emergent barriers included (a) low-perceived vulnerability, (b) financial constraints, (c) being uninformed of needed actions, and (d) fear of burdening. In addition to its prominence within the narratives of non-planners, financial constraints also emerged as a barrier to establishing autonomous care provisions within the narratives of the European American Externally Reliant Planners.

Low-Perceived Vulnerability Within the narratives of those who had not planned, a recurrent theme included the irrelevance of future care planning due to low-perceived personal vulnerability. Informants described planning as unnecessary for several reasons including describing themselves as too “healthy” or too “stable” to warrant exploration of care options. Similarly, inability to perceive a potential scenario in old age where they would “ever require help” was also evident. This barrier was shared among both African Americans and European Americans in the Wishful Thinkers and Avoidant categories.

Financial Constraints In addition to perceived irrelevance of planning, financial constraints emerged as an impediment to establishing plans for future care. Among those who had not planned, the extensive financial obligation of LTC insurance and/or living within a CCRC was noted as a major deterrent to arranging independent care plans. Several informants further suggested that they “waited too late” to plan and, in doing so, saw LTC premiums become impractically high; purchasing LTC insurance became a choice between paying high premiums or paying for current living expenses. This financial impediment was particularly evident among European Americans who were Aware of Preferences and Wishful Thinkers but less evident in the African American subsample. Although many African Americans discussed the great expense of LTC insurance or paying for LTC directly, they did not identify monetary constraints as key barriers, as those options did not reflect their care preferences. As seen in Ellen’s quote above, financial constraints did not impede independent care plans, as care facilities were “the bad place,” and informal caretaking was the desired future care goal. Although fiscal issues may play some background role in shaping care preferences, monetary issues were not described as barriers among African American women in this study. Although financial constraints served as a barrier for many European American non-planners, insufficient finances were also mentioned as a barrier among European American Externally Reliant women in moving toward


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more active planning steps. Reliance on family care arrangements, resulting from inability to afford autonomous care provisions such as LTC insurance, was a recurrent theme among many women in this planning group. Many of the European American informants discussed their informal familial care plans as a substitute for the alternatives that were, in their views, financially unattainable. Accordingly, although these European American women had established Externally Reliant Plans, they failed to reach their desired level of planning due to financial barriers. This theme was, however, not apparent among the African American Externally Reliant women; they did not describe reliance on familial care as a substitute but instead as their favored option.

Uninformed A third barrier to establishing plans for future care was being uninformed about the necessary actions required to ensure future care provisions. This lack of comprehension was seen, for example, in the absence of necessary conversations with family or friends required to assure that preferred informal care options were realized, or that preferences for formal care identified in interviews (e.g., LTC insurance or entering a CCRC) were completed. Although many informants conveyed very specific desires regarding who would provide them informal care, a recurrent theme was the assumption that it was unnecessary to discuss these preferences with the potential caretaker, relying instead on hope that their preferences would somehow be fulfilled. Furthermore, although informants also noted very specific preferences to live in a CCRC or to obtain LTC insurance, they seemed less informed regarding the monetary requirements or necessary orchestration required to meet these objectives. For example, one informant anticipated entering an upscale CCRC without exploration of room availability, associated costs, or entry requirements. Among women who possessed the financial resources to enter a CCRC or obtain LTC insurance, some explained they were unacquainted with how to begin the planning process, suggesting that being uninformed serves as a barrier for those with and without significant financial means. Accordingly, an emergent barrier, seen among both the African American and European American Aware of Preference group, included a lack of knowledge of the necessary conditions that must be satisfied prior to the realization of either informal or formal care.

Burden Perception of oneself as a potential burden was described as a major hindrance to developing informal care provisions involving familial/friend


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caretaking. Select informants across all three non-planning and both racial groups described how informal care plans were forgone to avoid burdening potential care providers, with statements such as “I don’t want the responsibility on anyone else but me.” Individuals who described feeling like a burden as a barrier to informal care planning indicated that absence of discussion and/or planning with loved ones would either result in a desired absence or delay of distress for these individuals. Furthermore, direct experience with elder caretaking, as well as having witnessed prior generations’ experience of caretaking burden, was very influential in the choice to forego informal caretaking plans with statements including “I don’t want them to give up their life, because I took care of my mother and my father.” Experiencing the burden of providing informal care within prior relationships sometimes motivated the abandonment of informal care planning for one’s own future.

Discussion In light of the growing number of older adults likely to encounter future health or LTC needs (Martin et al., 2009; Olshansky et al., 2009; Soldo et al., 2006), it is critical to expand our understanding of how aging individuals think about and make decisions to undertake, delay, or circumvent planning for future care. Prior qualitative work in this area has provided data on small or specialized samples, including limited narrative reflecting the voices of older adults and their nuanced statements regarding health planning (Carrese et al., 2002; de Boer et al., 2012; Malcomson & Bisbee, 2009). Analyses of 185 narratives indicate that women describe future care strategies across a framework of five themes: Autonomous Care Planners, Externally Reliant Planners, Aware of Preference, Wishful Thinkers, and Avoidant. Two groups, Autonomous Care Planners and Externally Reliant Planners, have, to some degree, planned for their futures. In contrast, the three remaining themes reflect non-planning: Aware of Preference, Wishful Thinkers, and Avoidant. Individuals whose narratives fit these last categories described a present that did not include completed actions to prepare for future needs. In light of likely trepidation concerning planning among many in the older adult population (AARP, 2006; Kemp et al., 2005; Sorensen & Pinquart, 2000; Street & Desai, 2011), and prior qualitative literature suggesting that older adults are not necessarily prepared for periods of dependency prior to EOL (Carrese et al., 2002; Malcomson & Bisbee, 2009), it is surprising that our thematic analysis indicates that a majority of the older women in the sample have prepared for potential care needs (Planners for Autonomous Care and Externally Reliant, n = 126). Nonetheless, the highest


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degree of planning, Planners for Autonomous Care (n = 62), which included LTC strategies recommended by experts, was not achieved by a majority of the overall sample and showed a difference by race. European American women were overrepresented in this group (84%, compared with 58% of the sample), indicating that autonomous care plans of the type suggested by experts were less often achieved by the African American subsample. These results are partially explained by the African American women’s tendency to organize care arrangements in terms of informal care; this is consistent with literature indicating that responsibility toward relatives and close friends is an important cultural value in the African American community (Burr & Mutchler, 1999; Gallant, Spitze, & Grove, 2010; Johnson, 1999). Unlike studies suggesting that level of planning for future care is significantly associated with sociodemographic factors (Cramer & Jensen, 2006; Sorensen & Pinquart, 2000; Temple & Cockley, 2012), our quantitative analysis indicates that age, parental status, marital status, and self-reported health were unrelated to degree of planning for future health needs among this sample of older women; this outcome may be related to the sampling approach and goals of the parent study, which focused on meeting qualitative objectives rather than quantitative generalizability. Evaluation of the five health care planning groups as a whole suggests that the importance of future care planning is largely recognized and some form of care planning is achieved among the majority of older women. However, only a minority use approaches recommended by experts, such as LTC insurance. Nonetheless, a considerable number of the informants had not taken concrete steps to plan for future care (n = 59, 32%). Emergent themes among those in the non-planning groups were relatively consistent with prior literature. Many non-planners were Aware of Preference, expressing a preferred method or location of health care delivery. Although, similar to many in Hopp’s (2000) sample, these informants had yet to discuss their preferences with the designated care provider. Discussion with designated individuals may be constrained by assumptions that care preferences are already known by potential caretakers (Malcomson & Bisbee, 2009). Expression of a clear preference of future care delivery, paired with an inactive approach to achieving the stated support, suggests a disconnection between anticipated health outcomes and the necessary dialogue and arrangements required to ensure these preferences are met. Care planning strategies among Wishful Thinkers, those who hoped they would never need health services as they progressed in age, may reflect unrealistic and anxiety-laden views of aging, a characteristic Yan and colleagues (2011) indicate can be seen among aging Baby Boomers. Informants who expressed an Avoidant mentality to future


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care planning represent perhaps the most problematic and concerning group, as these individuals refused to even think about care plans or suggested suicide as a means to avoid planning. Similar to our results, Carrese and colleagues (2002) found that participants were reluctant to think, plan, or acknowledge future care needs. Our thematic analysis corroborates the presence of an Avoidant mentality toward care planning, although less prevalent in our sample (5%) than Carrese’s (80%). Similar to avoidance of future care planning, Schickedanz and colleagues (2009) found that a portion of informants also approached EOL planning through avoidance with statements including “I don’t want to think about death.” In addition to the five planning themes, several barriers to planning were identified: low-perceived susceptibility, financial constraints, being uninformed of necessary actions, and fear of burdening. As seen in other studies (Pinquart & Sorensen, 2002a; Schickedanz et al., 2009), perceptions of oneself as invulnerable and attitudes viewing planning as irrelevant served as major blockades to establishing future care provisions. Likewise, fewer financial resources prevented planning for autonomous care, particularly among European American women. Consistent with cultural values in the African American community for care responsibility to fall to relatives/close friends (Burr & Mutchler, 1999; Gallant et al., 2010; Johnson, 1999), it appeared that monetary constraints were not perceived as a barrier among the African Americans. Financial resources were of diminished importance, because of this groups’ preference toward informal care plans rather than preparation for formal care in the home or in a care setting, like assisted living or a nursing home. Being less aware of the steps required to achieve both formal and informal care goals also hindered future care plans. Assumptions that one’s care preferences would be implemented without any prior arrangement or discussion suggest an unrealistic appraisal of the basic actions necessary to ensure care. Supporting previous literature (Schickedanz et al., 2009), our findings indicate that feeling like a burden impedes the establishment of informal care plans.

Implications Demonstration that women contend with and describe future care planning across a continuum of five categories suggests great diversity in how women approach possible periods of poor health or functional dependency prior to EOL. Using narrative from older women, direct representation of their meanings in relation to choices to plan/not plan for future care was added to ongoing discussion of this topic. This rich detail contributes to knowledge of how


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aging women construe their options, make choices, and address this important area for their future well-being. Identification of barriers that hinder planning is also paramount to improving care outcomes in the older adult population. Beyond arranging simply for EOL care, clinicians can attend to these barriers using a person-centered approach to improve the prospect of planning for potential care needs. For example, being in tune with an individual’s fear of being a burden to informal caretakers can help clinicians or service providers suggest care planning alternatives that remove informal care strategies from the care planning equation, lessening or minimizing this impediment. Furthermore, in light of the emergent themes indicating financial constraints, low-perceived vulnerability, and being uninformed of necessary actions serve as barriers to planning, there is a need to develop interventions aimed at strengthening both knowledge and understanding of the importance of future care planning, as well as the steps and financial resources necessary to select from available options. Although the qualitative literature on planning for future care needs is limited, several studies have demonstrated that the Transtheoretical Model (TTM) is a valuable framework for investigating advance care planning as a process of behavior change (Fried et al., 2009; Fried et al., 2010). The TTM is characterized by five stages of change including precontemplation (the individual does not intend to take action), contemplation (the individual considers taking action in the near future), preparation (the individual plans to take action in the immediate future), action (the individual has competed changes in behavior), and maintenance (the individual upholds behavior change; Fried et al., 2010; Marshall & Biddle, 2001). Although the design of the present study was not suitable to test the applicability of the TTM’s stages, as the present study did not examine informant’s desire/ intention to change or any earlier stance regarding planning, our findings align with portions of this established model, supporting its utility. The TTM’s stage of precontemplation appears similar to Avoidant and Wishful Thinker categories, as these groups had not conceptualized care plans. Similarly, those who were Aware of Preference loosely align with the TTM’s stage of contemplation, as these individuals had conceptualized plans but had yet to execute these potential arrangements. But, given the cross-sectional nature of our qualitative data, it was not possible for us to examine whether there was progression toward greater planning over time. Future research may consider assessing our proposed continuum of future health care planning in terms of the TTM to directly evaluate whether they reflect specific stages of a progression toward planning or simply differences in actions and outcomes.


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Limitations Several limitations of the current research should be noted. The larger study’s interview guide was developed to focus primarily on issues relating to generativity among women. Therefore, questions relating to future health care needs were limited in terms of depth and detail. Likewise, this article only reports the findings of data from interviews with women who were predominantly childless, were recruited from one general geographic area, and utilized a sample that purposefully overrepresented African American women. Consequently, the distribution of participants across categories is unlikely to be replicated in other samples. Nonetheless, our data provide important narrative clues regarding the meanings and arguments that underlie positive actions and inaction in planning for future health needs.

Conclusion In an effort to expand the limited qualitative literature on health care planning and broaden our understanding of the meanings and challenges of planning for future care needs, examination of narrative data on 185 female informants revealed that women describe and contend with potential care needs across a continuum of five themes that range from proactive Autonomous Care Planning to complete Avoidance. In addition to a continuum of five themes of future care planning, examination of the data indicated four predominant barriers to establishing care provisions: low-perceived vulnerability, financial constraints, being uninformed of necessary actions, and fear of burdening. Findings may be applied to future health care of LTC planning research by providing added, rich detail on how aging individuals construct their options, make choices, and address this important area for future well-being. Acknowledgments We are grateful to the reviewers for their insightful critique, the National Institute on Aging (NIA) for its support, and the informants who made this study possible.

Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Data reported in this article was


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supported by a grant from the National Institute on Aging (Grant Number: R01AG030614; Principle Investigators: Robert L. Rubinstein and Kathryn de Medeiros).

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