Abstract
Cancer and its treatment can make it difficult for older adults to engage in meaningful activities and to achieve life goals (Lyons, Lambert, Balan, Hegel, & Bartels, 2013). The difficulties can stem from physical or emotional challenges related to cancer or its treatment; time constraints; or social, environmental, or financial barriers that survivors encounter. Disruption of life goals is associated with poorer psychological outcomes in adult cancer survivors (Hullmann, Robb, & Rand, 2016).
Cancer rehabilitation attempts to facilitate attainment of cancer survivors’ goals. Occupational therapy practitioners teach people how to maximize abilities and adapt activities and environments to attain personally meaningful goals (American Occupational Therapy Association, 2014). However, goal attainment is not always achievable, and cancer survivors sometimes need to adjust goals during and after rehabilitation.
Goal adjustment is an adaptive coping strategy that survivors can use when life goals are ultimately or temporarily unattainable. Goal adjustment has two components (Wrosch, Scheier, Miller, Schulz, & Carver, 2003). The first component, goal disengagement, prevents the negative emotional consequences of pursuing a futile goal. The second component, goal reengagement, directs renewed energy toward attainable goals. Adults who engage in goal adjustment report increased well-being, lower stress, better sleep, and fewer intrusive thoughts (Wrosch, 2011).
Researchers have suggested that fostering goal adjustment may be an important aspect of comprehensive cancer rehabilitation (von Blanckenburg et al., 2014) because studies of cancer survivors have suggested that the capacity for goal reengagement is predictive of better mental health (Mens & Scheier, 2016; Schroevers, Kraaij, & Garnefski, 2008). However, studies of goal adjustment of cancer survivors have not explored the potentially moderating effect of age in their analyses. The broader studies of goal adjustment in older adults (not limited to cancer survivors) have tended to instead emphasize the mental health benefits of goal disengagement (Dunne, Wrosch, & Miller, 2011; Wrosch, 2011). Recently, researchers have found an interactive effect such that older adults who reported greater capacity to both tenaciously pursue goals (i.e., akin to goal reengagement) and to flexibly adapt them (i.e., similar to goal disengagement) also reported greater well-being than adults who were high in one component and low in the other (Kelly, Wood, & Mansell, 2013).
If goal adjustment is to become an explicit aspect of cancer rehabilitation, more description and understanding of the process is needed to guide practitioners’ clinical reasoning. A recent study provided the opportunity to contribute to this literature. We conducted a pilot randomized controlled trial of an occupational therapy intervention designed to help older adult cancer survivors set and attain goals related to activities that promote the health of their body, mind, and spirit. The first step of the analysis of this pilot study was to describe what occurred within the intervention in terms of the types of goals that were set and the degree to which participants could attain their goals. To understand how we can refine the intervention for subsequent trials, we also explored the degree to which participants reportedly adjusted their goals when they did not attain them. As such, in this analysis, we explore the following question: What rates of goal attainment and patterns of goal adjustment are reported by older adults who experienced the occupational therapy intervention?
Method
Design
These data were generated from a randomized controlled feasibility trial of an occupational therapy intervention for older adults diagnosed with cancer. The study protocol was approved by the Committee for the Protection of Human Subjects at Dartmouth College and was registered with ClinicalTrials.gov (NCT01709344) before initiating recruitment. The purpose of the feasibility trial was to determine rates of enrollment and retention in both the intervention and the control conditions (these primary outcomes are not presented in this article). In this article, we describe an exploratory analysis of the session data generated from the participants who experienced the intervention.
Participants were recruited through the Norris Cotton Cancer Center in Lebanon, NH, and the Veterans Administration Medical Center in White River Junction, VT. The following criteria were used to determine eligibility:
Age 65 yr or older
Experiencing disability as indicated by a score of ≥3 on the Vulnerable Elders Survey (Saliba et al., 2001) or answering “yes” to the following question: “Do health problems interfere with your ability to carry out your social or day-to-day activities?”
Either
∘Diagnosed with any solid or hematological cancer, undergoing treatment with curative intent, or within 6 mo of completion of therapy with absence of disease recurrence or
∘Diagnosed with metastatic breast cancer or chronic hematologic malignancies with a life expectancy of ≥2 yr.
People were ineligible if they demonstrated moderate or worse cognitive impairment (i.e., a score of ≤3 on the Callahan 6-item cognitive screening tool; Callahan, Unverzagt, Hui, Perkins, & Hendrie, 2002) or had medical record documentation of schizophrenia, bipolar disorder, active suicidal ideation, or active substance use disorder.
All participants engaged in informed consent and signed a written document confirming their consent. Participants were randomized (1:1) to receive either the intervention (the Health Through Activity Program) or usual care.
Health Through Activity Program
The Health Through Activity Program is based on theories of self-regulation that emphasize the importance of aligning people’s personal standards and current circumstances (Carver & Scheier, 1998). The objective of the program was to reduce disability in cancer survivors by using strategic goal setting, problem solving, and action planning to close the gap between what the person wanted to be able to do and what he or she was currently doing. The program used the principles and format of behavioral activation (Lejuez, Hopko, Acierno, Daughters, & Pagoto, 2011) and problem-solving treatment (Hegel & Arean, 2003), two brief and pragmatic behavioral therapies that teach people to increase their engagement in pleasurable and productive activities that influence their mood and reflect their personal standards. The development of the blended intervention has been described elsewhere (Lyons, Hull, et al., 2015).
Throughout the program, participants were asked to consider whether their daily activities were enjoyable, satisfying, manageable, and health promoting. Each week they were asked to write themselves at least one “activity prescription” consisting of a goal to perform an activity that they thought would promote the health of their body, mind, and spirit. The program was person-directed in that participants had complete control over the activities that were targeted, their goals, and the intensity of their activity engagement.
The program consisted of six sessions conducted by an occupational therapist at the participants’ homes. Each participant received a workbook that contained educational information and worksheets to record 6-wk and 1-wk goals. The first session began by describing the purpose and format of the intervention and the workbook. Information was presented about (1) the relationship between activities and health, (2) how cancer treatment can affect activities, (3) the importance of exercise and physical activity as a way to promote health and reduce the negative consequences of cancer and its treatment, (4) the way in which the intervention may help participants, and (5) the importance of adopting a creative and optimistic attitude when trying to resume or initiate activities.
Participants were then asked to share information about the activities that they felt promote the health of their body, mind, and spirit. Participants were asked to identify one to six goals that they wanted to accomplish by the end of the 6-wk intervention. For each 6-wk goal, participants were asked the following questions: 1
“What makes the activity hard, or why haven’t you been doing it?”
“How often have you done the activity in the past month?” using ratings of never, almost never, once in a while, often, and very often (subsequently coded 1, 2, 3, 4, and 5, respectively)
“How important is it for you to do this activity?” using a scale ranging from 1 (not important at all) to 10 (extremely important)
“How confident are you that you could do this activity safely and comfortably?” using a scale ranging from 1 (not at all confident) to 10 (extremely confident).
The second session began with the occupational therapist reviewing information about planning and adapting activities (additional education about exercise, energy management, and sleep was included in the workbook and reviewed only if participants were struggling with those issues). Participants were then asked to reflect on the previous week and to identify activities that they did that promoted the health of their body, mind, or spirit. Participants then set at least one goal targeting an activity that they would like to perform in the next 7 days. Using one worksheet per goal, the occupational therapist asked the participant to describe and document (1) the motivation for the activity; (2) the obstacles that might make the activity hard or impractical; (3) a behavioral, observable, and achievable 1-wk goal for the activity; and (4) an action plan that details when, where, how, and with whom the activity will be performed. The participants were encouraged to track their activity engagement and goal attainment with a chart. Participants were also offered the opportunity to engage in the activity during the session (e.g., take a walk with the occupational therapist) or to identify any equipment that would increase the feasibility of the activity (e.g., use the research funds to purchase accordion straps that would replace the clothesline that the participant had been uncomfortably using).
The remaining sessions began by asking the participant to reflect on the previous week in terms of (1) 1-wk goal attainment and (2) other health-promoting activities performed. Participants were asked to rate their satisfaction with the effort they put into meeting the goal and the outcome. The participant then set a new 1-wk goal for the coming week. The fourth session included a discussion of the original 6-wk goals set by the participant and how he or she felt about the progress toward those goals. During the sixth session, participants were once again reminded of the 6-wk goals and were asked to determine whether the goal had been met. They then repeated the ratings of frequency, importance, and confidence for each of the 6-wk goals and discussed their future plans.
Data Collection
The occupational therapist recorded the 6-wk goals and the ratings of frequency, importance, and confidence on paper files during the home visits. Each week, the occupational therapist recorded the session details (e.g., goals, obstacles, action plans) on a worksheet and then transcribed the data into a FileMaker database after the session was over. The data were exported into Excel (Microsoft Corp., Redmond, WA) for coding and summarization and into IBM SPSS Statistics (Version 19; IBM Corp., Armonk, NY) for hypothesis testing.
Analysis
To describe the types of activities targeted within the intervention, the principal investigator (first author) assigned an activity code to each 6-wk goal. The code described the general type of activity that was the target of each idiosyncratic goal. For example, goals that involved reading, painting, or quilting were coded as “sedentary leisure” activities. The coding scheme was developed by the principal investigator and was used in content analyses of other intervention development studies (Lyons, Erickson, & Hegel, 2012; Lyons, Svensborn, Kornblith, & Hegel, 2015).
Another coding scheme was developed to describe goal adjustment that occurred in response to a lack of goal attainment. The reasons given by participants for not meeting a 6-wk goal were coded as representing either goal reengagement or goal disengagement. Goal reengagement was operationalized as a participant stating that he or she still intended to pursue the goal. Goal reengagement had three subcodes: wanting to modify the goal, wanting to gather more information before pursuing the goal, or wanting to pursue the same goal. Goal disengagement was operationalized as deciding not to pursue the goal further in the short-term future. Goal disengagement had four subcodes: reengagement to another activity (i.e., when the participant said he or she would rather do a different activity than the one initially identified), change in priorities (i.e., when the participant said he or she lacked motivation or no longer wanted to do the activity), postponing until a new season (i.e., deciding not to pursue an activity until the weather changes), or finding the goal unattainable.
To describe goal adjustment during the intervention, we compared the weekly goals with the 6-wk goals, and we made a judgment regarding whether a participant’s weekly goals were directly related to that participant’s 6-wk goals. For example, if a participant set a weekly goal to play the piano at least once during the week, and one of the 6-wk goals was to play the piano twice a week, then the weekly goal was said to reflect the 6-wk goal. However, if the weekly goal related to doing arm exercises, but the 6-wk goals only targeted piano playing and walking for exercise, then the weekly goal was said to be unrelated to the 6-wk goals.
A coinvestigator (second author) reviewed the coding schemes, the raw data, and the applied codes. Discrepancies were resolved by returning to the session notes and developing consensus. Descriptive statistics (frequency and proportion) were then calculated for the participant characteristics, goal attainment rates and codes, and goal adjustment rates and codes. We first conducted descriptive statistics using the participant as the unit of analysis, and then we used the goal as the unit of analysis.
A ratio was calculated for each participant reflecting the number of goals met divided by the number of goals set. That ratio was treated as a score. When visual inspection suggested that the scores were higher for participants who set one or two goals (n = 13) versus participants who set three or more goals (n = 11), an independent samples t test was used to test that a posteriori hypothesis. Paired t tests were calculated for the pre- and postintervention ratings of frequency of activity engagement, importance of the activity, and confidence in activity engagement.
Results
Health Through Activity Program Participants
Thirty participants were randomized to the intervention arm of the study. Three female participants withdrew from the study before completing the intervention or any follow-up assessments. Another 3 female participants did not identify any goals in the first session that they wanted to address within the 6-wk intervention. One of these participants subsequently identified three challenging activities (cooking, sleeping, and decluttering her home) and set weekly goals targeting them. The other 2 women completed the intervention by reviewing the educational content of the intervention and discussing how it applied to them, but they did not set weekly goals.
The dataset for these analyses consists of the remaining 24 participants who set at least one 6-wk goal during the first session of the intervention. The sample consisted primarily of women (n = 16; 67%). Eleven participants were in treatment of metastatic cancer, and 13 participants were receiving (n = 5) or had completed treatment (n = 8) with curative intent. Participant characteristics are listed in Table 1.
Participant Characteristics (N = 24)
Note. M = mean; SD = standard deviation.
Goal Attainment
Participants as the Unit of Analysis.
The 24 participants set an average of 2.6 goals for the 6-wk program (standard deviation = 1.4, range = 1–6). On average, participants met 68% of their 6-wk goals. Nine of the 13 participants who set one or two goals met all their goals, whereas only 1 of the 11 participants who set three or more goals met all goals. Attainment ratio scores (i.e., number of goals met divided by the number of goals set) were significantly higher for participants setting one or two goals versus those setting three or more goals (0.81 vs. 0.53, respectively), t(22) = 2.1, p = .045.
Goals as the Unit of Analysis.
The dataset was composed of 63 6-wk goals. The activities targeted by the goals and the corresponding rates of goal attainment are listed in Table 2. Most of the goals addressed walking (28%), sedentary leisure (24%), exercising (16%), and instrumental activities of daily living (IADLs; 14%).
Types of Activities Targeted With 6-Wk Goals and Goal Attainment (N = 63)
Participants generally set goals regarding activities that they were not doing regularly. The targeted activity had “never” been performed in the past month for 19 goals (30%), was “almost never” performed for 15 goals (24%), and was performed “once in a while” for 18 goals (29%). Only 5 goals (8%) were performed “often,” and 6 goals (9%) were performed “very often.”
Rates of goal attainment according to the type of activity are listed in Table 2. Participants met 39 of the 63 goals (62%). For 9 goals, the outcome exceeded the goal. Participants did not meet the remaining 24 goals (38%), although they did partially attain 10 of those goals. Taken together, participants either met or made progress toward 49 of their goals (78%).
The frequency of engaging in the activities targeted in the 6-wk goals significantly increased over the course of the program: mean change = 1.0, t(62) = 5.8, p < .0001. Likewise, participants reported increased confidence that they could continue to engage in the activity safely and comfortably at the end of the program: mean change = 1.2, t(61) = 3.9, p < .0001. Ratings of the importance of the activities remained unchanged during the intervention: mean change = −0.10, t(60) = 0.43, p = .67.
Goal Adjustment in the Context of Unmet Goals
As noted earlier, participants did not attain 24 of the 6-wk goals set during the intervention. For 14 of the nonattained goals (58%), participants were in the process of goal reengagement, that is, they still wanted to pursue the goal. The reengagement process involved updating the goal (n = 9; i.e., to do an activity less frequently), gathering more information before pursuing a goal (n = 3; e.g., going to physical therapy to receive an updated exercise regimen), or planning to do the activity in the near future (n = 2).
For 10 nonattained goals, participants had disengaged from the goal. For 2 of those goals, disengagement was followed by reengagement to an alternative activity. For example, one woman initially wanted to be able to stand and wash her dishes every evening. During the program, she decided that she would prefer to use her limited energy on leisure and exercise and to use paper plates for the foreseeable future. Another woman had initially wanted to paint but later decided that she enjoyed quilting more than painting, so she disengaged from the goal of painting.
For the other 8 nonattained goals, the participants disengaged without finding a replacement activity or goal. Most often, they reported having low motivation for the activity or feeling that their priorities had changed regarding the activity (n = 4). Two goals were postponed until the next season (n = 2; i.e., ski next season, read more in winter). For the remaining 2 goals, the participants felt the goal was simply unattainable or impractical at the moment (n = 2; i.e., one man did not think he would pass the driving test to regain his license, and one woman felt she was too tired for local day trips that she used to enjoy).
Goal Adjustment During the Intervention
Forty (63%) of the 6-wk goals were addressed with at least one weekly goal. The remaining 23 6-wk goals (37%) were discussed during at least one session (i.e., during Session 4 the occupational therapist asked about overall progress toward each goal), but a weekly goal was never set to address the 6-wk goal. On most occasions, the participants met (n = 10) or made progress (n = 2) toward the 6-wk goal despite not formally setting any weekly goal for that activity. The remaining 11 6-wk goals that were not addressed by a weekly goal were subsequently not met by the end of the intervention.
Thirteen participants (54%) set at least one weekly goal that was unrelated to any of their 6-wk goals. This occurred when the participant decided to work on an activity that was not initially mentioned as being problematic or being a priority. The new goals involved IADLs(n = 5), sedentary leisure (n = 4), exercise (n = 4), relaxation activities (n = 2), walking (n = 2), and socializing (n = 1).
Discussion
The participants in the Health Through Activity Program were able to meet or make progress toward more than three-fourths of their 6-wk goals. Participants reported increases in how often they engaged in the activities targeted by the goals and how confident they felt in their ability to engage in those activities. The program was designed to use an activity planning framework to address any activity that a participant felt would promote the health of his or her body, mind, and spirit. This aim appears to have been met because participants used the framework to address activities falling into eight different domains.
When designing the intervention, we assumed we would help people attain the goals they set during the first session. While conducting the study, we were intrigued by the amount of goal adjustment that occurred during the intervention. The literature cited below has suggested that the degree and type of goal adjustment that occur when goals are not attained may be equally important components of mental health.
In one of the few studies describing goal adjustment strategy use in cancer survivors, Janse, Ranchor, Smink, Sprangers, and Fleer (2016) interviewed adults (mean age = 65 yr) with colorectal cancer within the first 6 mo after diagnosis. When unable to meet goals, participants most often continued to pursue them without altering the goal and then, to a lesser extent, put the goal “on hold,” modified the goal, or disengaged from the goal. This pattern contrasted with the pattern seen in our study, in which participants most often disengaged from the goal, modified the goal, put the goal on hold, or continued to pursue the goal unchanged. This difference may reflect our intervention that encouraged participants to repeatedly set and revise their goals and to monitor their satisfaction with the outcome. It is possible that repeated practice in weekly goal setting could have a therapeutic effect because Janse et al. noted that working toward a goal tenaciously with little achievement over time could cause distress.
Our findings raise questions about how to best measure the efficacy of person-directed interventions. The goal of occupational therapy is to help people find ways to meet their idiosyncratic goals regarding occupational engagement. Goal attainment scaling (GAS) has been suggested as a measurement approach for situations in which there is heterogeneity in desired outcomes (Turner-Stokes, 2009). However, GAS is highly dependent on the ability of the person to generate reliable scales and realistic goals (Krasny-Pacini, Evans, Sohlberg, & Chevignard, 2016). In our study, participants were usually setting goals for activities that they did not have recent experience performing. This may be problematic because the disablement process in oncology is often subtle and insidious (Cheville, Beck, Petersen, Marks, & Gamble, 2009). Participants in our study usually reported that they wanted to continue pursuing their unmet goals but wanted more time, information, or a more reasonable target. This suggests that participants faced a learning curve in determining what goals were manageable and achievable.
Most of the participants in our program also chose to set a 1-wk goal for an activity that was unrelated to their 6-wk goals. This could be viewed as a positive part of the program, in which the success in one activity domain perhaps carried into another domain. However, this development would fail to be captured in a study relying on GAS as the primary assessment.
Our findings also raise questions about what constitutes “success” when considering goal adjustment. Although most studies have suggested that the tendency for goal reengagement is linked to well-being in adult cancer survivors (Schroevers et al., 2008; Thompson, Stanton, & Bower, 2013; Wrosch & Sabiston, 2013), the literature on older adults without cancer reported that older adults with greater tendencies toward goal disengagement have lower rates of depression in the context of functional disability (Dunne et al., 2011). However, frequently disengaging from goals could plausibly reduce opportunities for older adult cancer survivors to experience positive affect and to engage in activities that help them to maintain strength and physical capacity. As such, knowing which goals are attainable and finding ways to engage in activities safely and effectively may be more important than goal adjustment tendencies when considering older adult cancer survivors’ overall health.
The results of our study should be interpreted with caution given the following limitations of the study design. The main limitations relate to measurement issues. The measures of frequency of activity engagement, importance of activity, and confidence performing the activity were originally conceptualized as questions to promote appropriate goal setting, as opposed to being used as outcome assessments. These questions depend on subjective recall of activity engagement and were investigator-developed and not subjected to psychometric testing. Similarly, we operationalized goal reengagement as a stated desire to continue pursuing a goal after completing the intervention, but we do not know the degree to which the goal was actually pursued in the weeks that followed. Therefore, the outcomes related to changes in activities should be considered cautiously.
Other limitations of the study relate to bias and sampling. The goal attainment data were reported by participants to the occupational therapist who conducted the intervention as opposed to a blinded data collector. As such, there is the potential for social desirability bias in reporting goal attainment. We attempted to reduce possible bias by asking the participants to rate whether the goal was attained or adjusted without comment by the occupational therapist and by not providing the participant with the baseline frequency, importance, and confidence ratings. Finally, the sample consisted of primarily White, non-Hispanic people who were more than 65 yr old, and the findings may not reflect the goal attainment rates and goal adjustment patterns of a younger, more diverse group of cancer survivors.
Implications for Occupational Therapy Practice
Goal adjustment is related to positive psychological outcomes in cancer survivors. Researchers have argued that goal adjustment should be addressed and fostered within comprehensive cancer rehabilitation. However, little is known about the process and outcomes of goal adjustment for cancer survivors. Our study suggests that clinicians and scientists should be aware of the following factors:
Cancer survivors’ goals may be quite malleable in the context of the subtle and insidious disablement process seen in cancer, especially when addressing activities that they have not performed recently.
In future research, investigators should test the hypothesis that encouraging survivors to set weekly goals that reflect their long-term goals may promote goal reengagement and well-being.
Conclusion
Scheier and Carver (2001) have argued that successful psychological adaptation to cancer involves staying engaged in life. A goal of cancer rehabilitation, therefore, is to help people avoid “a kind of functional death in which the person prematurely disengages from the opportunities of life” (Scheier & Carver, 2001, p. 27). This process may involve goal reengagement to activities that promote health and well-being or goal disengagement for activities that are unattainable or do not contribute to healthy living.
Although the older adults in the Health Through Activity Program were able to meet most of the 6-wk goals they set at the beginning of the intervention, they also changed their goals and priorities after further reflection or practice with an activity. Sometimes this change meant adding a new activity to a routine, and sometimes it meant discontinuing an activity that originally seemed important. More research is needed to longitudinally measure goal adjustment and well-being in specific situations and for specific groups of older and younger cancer survivors to understand how to better promote goal adjustment within cancer rehabilitation.
Footnotes
Acknowledgments
We thank Ingrid Svensborn, Daphne Ellis, and Sheree McCleary for their assistance with recruitment; we also thank the study participants for sharing their experiences. Kathleen Doyle Lyons was supported by Mentored Research Scholar Grant MRSG-12-113-01-CPPB in Applied and Clinical Research from the American Cancer Society. The study protocol was registered with 
before the initiation of participant recruitment (NCT01709344).
1
While pilot testing the intervention with 12 participants (not included in these analyses), the occupational therapist used the Canadian Occupational Performance Measure (Law et al., 2014) to ask about performance ability and satisfaction with the selected activities. Participants reported difficulty answering those questions because they often had not performed the chosen activities (ever or recently). In response, we modified the treatment manual after that pilot testing and adopted investigator-developed questions. The first question’s response choices were modeled after the Late Life Function and Disability Instrument (Jette et al., 2002), and the latter two questions’ response choices were modeled after the Canadian Occupational Performance Measure.