A study published in 2015 by the National Alliance for Caregiving and the AARP Public Policy Institute estimated that 43.5 million adults in the United States provided care to another person during the previous year. Of that number, 34.2 million people provided care for an adult 50 years or older. As the U.S. population continues to age (U.S. Census Bureau, 2017), so will the number of caregivers needed (Tally & Crews, 2007). Because of the anticipated increase in caregivers, exploring the effect of caregiving is an important area for research.
Many studies have shown that caregivers experience multiple stressors because of the difficulty of the role (Moghimi, 2007; Pinquart & Sörensen, 2003; Tally & Crews, 2007). These stressors, also referred to as caregiving burden, can be experienced as emotional, psychological, social, financial, or physical problems (Roth et al., 2015). The negative effects of caregiving influence not only the health of the caregiver but also that of the person receiving care (Moghimi, 2007). However, not all caregivers experience adverse effects of caregiving, and some caregivers report positive changes (Roth et al., 2009, 2015). One national study found that one third of caregivers reported minimal to no caregiving burden and had better physical and mental health compared with people who were not providing care (Roth et al., 2009). With such a dichotomy in the effect of caregiving, it is important for researchers to explore the factors that contribute to the stress of caregiving and to discover why some individuals report a higher sense of burden than others. One way to learn about the divergent responses to caregiving is to investigate participation in daily activities through the lens of occupational therapy.
Researchers in health care have explored the different ways in which people handle adverse medical situations, such as chronic illness. They sought to discover how some individuals move beyond focusing on the initial diagnosis, symptoms, and burdens and eventually discover the positive aspects of their new life. Yet, others seem to focus on the debilitating effects of the diagnosis and never get beyond the negative features of their situation (Barclay-Goddard et al., 2012; Dubouloz et al., 2010). One explanation for the progression that individuals experience in response to chronic illness is the Process of Transformation Model (Barclay-Goddard et al., 2012; Dubouloz et al., 2010). This model describes how people move from the initial diagnosis to acceptance and then create a new way of life. Because no models address the adjustment and stress of caregivers, and because the lives of caregivers and care receivers are intertwined (Geffen Mintz, 2014; Moghimi, 2007; Persson & Zingmark, 2006), this model also may offer insights into the way that caregivers of those experiencing chronic illness adjust and move beyond a focus on burden.
Transformation in the experience of chronic illness has been explained by researchers as a three-phase model known as the Process of Transformation Model: Chronic Illness and Primary Care (Dubouloz et al., 2010). In the first phase, “initial response,” the individual receives a diagnosis and has a personal response, and loved ones learn of the diagnosis and have responses of their own. These responses can trigger an experience that serves as a catalyst that leads to the second phase, “embracing the challenge.” In this phase, the individual is faced with the challenge of critical reflection. The person explores, experiments, and learns and makes adjustments to perceptions, activities, and relationships. The adjustments made in the second phase may lead to the final phase, “integration of new ways of being,” in which the individual constructs new meaning and makes positive discoveries about life, himor herself, and others. The movement through the transformation model is affected by personal contexts, such as willingness and readiness to change, and social contexts, including support from others (Dubouloz et al., 2010). The process of transformation is complex. Some individuals remain in the first phase for up to 5 years, whereas others experience an iterative process, returning to earlier phases over time (Dubouloz et al., 2010). Exploring and understanding this process of transformation may offer insights as to how some caregivers transition through the phases to experience a new way of being and others do not.
A 2019 study, authored by Watford, Jewell, and Atler, described an intervention to increase meaningful participation in occupations for women who provide care for their spouses by examining their daily occupations and encouraging healthy occupational change. The intervention consisted of a time-use diary, the Daily Experiences of Pleasure, Productivity, and Restoration Profile (PPR Profile), combined with a reflective journal, the Journal of Activities and Experiences (JAE), used once a week for 4 weeks (Watford et al,. 2019). All caregivers rated the overall quality of life as “good,” according to the WHOQOL-BREF, an assessment instrument used to measure quality of life (WHOQOL Group, 1998). However, one group of caregivers reported clinically significant changes in scores for satisfaction on the Canadian Occupation Performance Measure (COPM) related to occupational goals after the intervention. Conversely, another group experienced a decline in change scores for satisfaction. This study explored the differences between the two groups of caregivers by analyzing their time use and associated experiences from the PPR Profile comments and the JAE. We used key concepts from the Process of Transformation Model to examine differences in the PPR Profile comments and JAE reflections between caregivers who experienced positive changes in satisfaction and those who did not. The specific research questions were as follows: (a) “What are the time use and associated experience differences between caregivers who reported clinically significant changes in satisfaction related to occupational goals and caregivers who did not?” and (b) “Do the caregivers' reflections and comments reflect different phases of transformation?”
Before initiation of this exploratory descriptive study, the institutional review board approved the study and participants provided informed consent. The study procedures can be found in Figure A (available in the online version of the article).
The first researcher (P.W.) recruited participants via social media. The original study article (Watford et al., 2019) provided an in-depth description of the recruiting procedure. All participants were women who were 55 years or older. All were married and assisted their spouses with cognitive and/or physical care. A total of eight women completed the study.
Canadian Occupational Performance Measure
The COPM is a self-reported, client-centered, standardized measure that is used to determine changes in occupational performance and satisfaction (Law et al., 2014). When the COPM is used as an outcome measure, a change score of 2 or greater indicates clinical significance (Law et al., 2014).
Daily Experiences of Pleasure, Productivity, and Restoration Profile
The PPR Profile is a time-use diary that was developed to explore activities that take place during a 24-hour day (Atler, 2014). During the day, individuals noted the time at which an activity took place, recorded the activity in their own words, categorized the type of activity, indicated who participated in the activity, and noted where the activity took place. Participants chose categories for each activity, such as caring for self, caring for others, caring for home, resting, fun/leisure, and socializing. In addition, for each activity, participants used a Likert scale rating of 1 to 7 to indicate the level of pleasure/displeasure, the level of productivity/unproductivity, and the feeling of being renewed/drained (Atler et al., 2016). A sample of the PPR Profile is shown in Figure B (available in the online version of the article).
Journal of Activities and Experiences
We developed the JAE as a reflective journal for use with caregivers. The tool was designed to prompt participants to reflect on the data obtained from the PPR Profile, set goals, identify action plans, and reflect on actions taken and progress made. Questions encouraged participants to examine obstacles and resources that influenced their progress. Two occupational therapists who work in a geriatric setting completed a pilot of the use of a combination of the PPR Profile and the JAE once a day for 4 days. The answers that the therapists gave in response to the questions in the JAE addressed the content appropriately. The therapists had no difficulty with the use of the two instruments and suggested no changes.
The intervention used in this study combined the use of the PPR Profile, a time-use diary, and the JAE, a reflective journal. Participants completed the PPR Profile and the JAE once a week for 4 weeks. Combining the PPR Profile with the JAE allowed participants to review their daily occupations, reflect on the types of activities and the feelings associated with them, and adjust their schedules to incorporate meaningful occupation into their daily routines (Watford et al., 2019).
The participants completed the COPM and WHOQOLBREF over the phone with the first researcher, who then mailed them the instructions, the timeline for completing the study, and study materials. Each week during the intervention, the first researcher sent an e-mail to participants reminding them to complete the study materials. At the end of the study, participants mailed the study materials back to the first researcher and completed the posttest by phone (Watford et al., 2019).
We performed quantitative analysis of the COPM by calculating change scores for the performance and satisfaction sections for each participant. Performance scores showed no patterns, but satisfaction scores identified two groups of participants. We divided the participants into a high group and a low group and examined the PPR Profile with Excel 2016 to examine the number of hours per week that participants spent engaging in each category of activity, along with the mean and range of scores for pleasure, productivity, and restoration for each category to determine whether there were differences between the groups. The first researcher entered data from the PPR Profile into spreadsheets to distinguish patterns between the groups. The spreadsheets included a tally of all activities; the average scores for pleasure, productivity, and restoration; and the number of hours per day spent in each activity. The two researchers analyzed the spreadsheets individually to distinguish patterns, such as similarities and differences in time spent in a specific activity or time spent alone or with others. The researchers met to discuss findings from the data and reached a consensus about the patterns.
We used deductive qualitative analysis (Hyde, 2000) to explore the written comments on the PPR Profile and responses to the JAE questions. The first researcher created a guide (Table 1) to identify language that corresponded to the phase of the Process of Transformation Model. After both researchers completed individual deductive analysis, they met to discuss findings. They discussed differences in their coding and came to a consensus about how to code each statement.
Phases of the Process of Transformation Model: Chronic Illness and Primary Care
We established rigor for the qualitative portion of the data analysis by coding the data independently with a common chart containing descriptors of each phase of the model. We then met to discuss the results and reached an agreement about the final coding of each statement. In addition, the first researcher also left a detailed audit trail to give insight into the process used to analyze the qualitative data. Finally, the first researcher electronically journaled thoughts and feelings experienced while conducting the qualitative analysis to identify any personal bias.
All participants in this study were women who provided care for their husbands in their home. They ranged in age from 57 to 79 years (M = 67.83, SD = 8.62). Hours per day spent caregiving ranged from 1 to 10 hours (M = 5.00, SD = 1.32), and years spent caregiving ranged from 1 to 20 years (M = 11.91, SD = 12.69). We divided the participants into two groups for this study, based on changes in the COPM satisfaction score (Table 2). We used the cutoff score for clinical significance (> 2) identified in the COPM manual (Law et al., 2014) to create the high group, and we created the low group from participants who reported negative change scores (< 0).
Pretest and Posttest Performance and Satisfaction Scores and Change Scores on the Canadian Occupational Performance Measure (n = 8)
Three participants had clinically significant change scores, and two participants had negative change scores, indicating decreased satisfaction. Because Barbara, Betty, and Sue all scored 2 or higher on the change score for satisfaction, they were identified as the high group, whereas Lexi and Olivia scored the lowest on the change score for satisfaction and were considered the low group. We excluded Betty from the PPR Profile exploration because she combined multiple activities within each section of the PPR Profile.
Table 3 shows the differences found among the high and low groups related to average hours engaged in daily activities and social activities. Participants in the high group averaged at least 2 hours per day socializing, twice as many hours as those in the low group, and they participated in more social activities throughout the day. Common activities categorized as socializing included walking the dog with neighbors, making crafts with friends, talking with friends and/or family, and sharing meals with friends and/or family. All of the participants rated pleasure with social activities as “moderate” or “extreme,” except Lexi, who rated her pleasure as “a little.” Olivia rated pleasure and rest with social activities as “extreme,” although this rating may have been affected by the Thanksgiving holiday, which occurred during this time.
Social Participation of Women Who Provide Care for Their Spouses
Table 4 shows the average amount of time that both groups spent engaging in activities with others during the 4 days of the study. Interestingly, the women in the low group spent more hours per day with their spouse than the women in the high group. In addition, participants in the high group spent more time with others, both with and without their spouse, than participants in the low group.
Activities Performed Alone and With Others
The second research question examined comments from the PPR Profile and the JAE to determine whether caregivers' experiences and perceptions identified factors that offer insight into the caregivers' phase of the Process of Transformation Model (Dubouloz et al., 2010).
Barbara's comments from the PPR Profile and day 4 of the JAE expressed many qualities found in the second phase, embracing the challenge. In one statement, she acknowledged the effect of her husband's illness, remarking, “These last 2 years have become very exhausting and stressful with him being in and out of the hospital, less independent and helpful around the house.” However, Barbara went beyond acknowledgment of the illness and critically reflected on the way she spends her time, “Need to find a way to balance more time for myself, but with others.” She also demonstrated learning from her routine and activities, “I need to get up earlier if possible. I am more productive in the morning.” In addition to reflection, she made plans to reschedule her daily activities, stating, “I think I will adjust my schedule to do more in the morning hours and not try to do things after work” and “I have to find ways to equal out housework so that when I find a day off, it's not spent cleaning, doing laundry, etc.” During the study, Barbara returned to spending leisure time with her husband, noting, “This week on Wednesday we went out as a couple (first time in 2 years).” In addition to demonstrating characteristics of the second phase, Barbara also made statements that indicated that she had entered the third phase, integration of new ways of being, by discovering important truths, noting, “It's hard, but very important to find time for yourself. The [sic] need to be creative in finding a way to be a couple. Find a way to have your spouse still be helpful in the daily household routine.” Also Barbara indicated that she paid attention to caring for herself and expressed the desire to provide care to others, saying, “Today things were equally spaced out with helping my spouse and others, then myself.”
Similar to Barbara, Sue made statements characteristic of the second phase, embracing the challenge, such as taking stock in her situation, saying “I'm lucky if I have time to sit down during to day [sic]. I guess I knew that. Just my day is full. Not complaining.” Additionally, Sue explained how she adjusted her perception, explaining, “Any day he can get up, walk, do [physical therapy], eat, have conversation, be alert, etc., is a good day.” Sue's responses continued through the transformative model, moving into the third phase, integration of new ways of being. When asked if the intervention with the PPR Profile and the JAE had changed her participation in activities, Sue replied, “Yes, I started going back to yoga,” indicating that she was giving greater attention to caring for herself. She also made additional comments that suggested a heightened sensitivity to life, such as “Trip around neighborhood was a nice chance to visit with neighbors, enjoy the morning” and “It's pleasant to be out in the early morning alone with the dogs—quiet. Enjoyable to walk with the dog walking group.”
Many of Olivia's responses seem to be related to the first phase, initial response, in which the individual experiences a personal response to the illness. Olivia said, “I feel like I have to do everything” and “I feel all of the load is on me. Husband is hard of hearing—and I have to constantly repeat.” In addition to the first phase, Olivia made comments that indicate that she may have transitioned into the second phase, embracing the challenge. When asked if she had made changes in her activities, she replied, “Not significant, but I cleaned two rooms well—so I felt better.” Olivia also demonstrated learning, another indication of the second phase, saying, “I procrastinate things I don't want to do, but ultimately do them and feel better.”
Lexi's responses primarily focused on the personal response to the illness, indicative of the first phase, initial response, saying, “The stress of being a caregiver compromises your health. I got a bad cold for 2 weeks. I tried hard to keep up, but I really felt I couldn't do it at times.” She also stated, “I need more help. My activities are severely limited these days because of his health, and more so if I am ill.” When asked if the intervention with the PPR Profile and the JAE had any effect on her activities, she answered, “No, because his health just declines almost daily. Most days are pretty routine, with a few adjustments.” Lexi made one statement that was suggestive of the second phase, embracing the challenge, remarking, “I do the best I can to take care of him and try not to worry too much. I keep everything on a pretty even keel for him, often putting myself last, so that he is happy.”
Examination of caregivers' daily activities and associated experiences allows researchers to better understand the difficulties associated with caregiving burden that can have a negative effect on both the caregiver and the care recipient (Moghimi, 2007; Watford et al., 2019). The goal of this study was to investigate the differences between caregivers who had significant change scores for satisfaction on the COPM and those who had negative change scores to determine whether their experiences and perceptions reflected different phases of transformation according to the Process of Transformation Model.
The demographic profiles of both groups showed that both of the members of the high group had older children living at home. Older children can be a resource if they help with the caregiving and household responsibilities (National Alliance for Caregiving & AARP Public Policy Institute, 2015). In contrast, older children in the house who are not contributing to the family by assisting with chores and caregiving could be a burden on the caregiver, adding to the daily workload and stress. When questioned about the role that the children had in caregiving, Sue stated that her adult daughter helped from 3:00 p.m. through the evening, and Barbara stated that both sons helped with caregiving. These findings align with previous research that showed that children and young adults often provide care to a parent (Levine et al., 2005; National Alliance for Caregiving & United Hospital Fund, 2005). Future research is needed to examine the amount of assistance that older children provide to determine its effect on the daily responsibilities of caregivers.
This study also found that caregivers who had clinically significant change scores for satisfaction on the COPM participated in more social activities and spent more time in social situations. The women in the low group participated in social activities only when they were associated with special occasions and not as part of their regular routine, supporting previous findings that isolation can be a factor in increased caregiver burden (Persson & Zingmark, 2006; Roth et al., 2009). Increasing social activities and interactions may help to increase caregiver satisfaction. Sue's interactions with others as part of her daily routine, including walking her dogs, talking with neighbors, and having a friend visit in her home, showed that even social interactions during ordinary activities can have a positive influence on satisfaction and may decrease caregiver burden. Occupational therapists can discuss socialization with caregivers and emphasize the need to participate in social activities as part of their daily routine.
Another difference noted between the high and low groups was the number of hours spent awake. The high group reported being awake an average of 16+ hours per day, whereas the low group reported being awake for approximately 14 hours per day. The low group, who spent fewer hours awake during the day, may have had less time to participate in social activities. In addition, researchers have linked depression, a possible result of caregiver burden, to increased time spent sleeping (Dauvilliers et al., 2013).
Interestingly, this study took place during the Thanksgiving holiday and the period when participants were preparing for Christmas. Barbara and Olivia both completed day 1 of the PPR Profile on Thanksgiving, rating dinner with family and friends with the highest score for pleasure and restoration. Barbara commented, “I love the holidays and being with my family.” Olivia shared, “It's holiday [sic]—cold outside, Christmas lights on—feel-good gray day.” Based on this study, the holiday had a positive effect on the participants. More studies should be done to evaluate the effect of holidays on caregivers and the increase in positivity as well as any additional burden that might be experienced.
Often, occupational therapists and other health professionals do not address the needs of the caregiver because the caregiver is not the client. As a result, the needs of the caregiver may be unaddressed (Moghimi, 2007). Health care providers should consider the needs of both the care receiver and the caregiver because of the documented negative effect that caregiver burden has on the care receiver (Moghimi, 2007). This study explored a self-directed tool that the occupational therapist can give to the caregiver to encourage healthy occupational change and possibly reduce caregiver burden (Watford et al., 2019).
Because only the high group reported an increase in satisfaction, it is important to explore ways to provide more individualized interventions for caregivers based on their progress in the process of transformation. Perhaps the use of a time-use diary and a reflective journal provided the high group with the insights needed to re-evaluate their participation in activities. A different intervention, designed to fit the needs of someone who is at the beginning stages of transformation, might have made a more significant difference for those still in the initial stages.
Based on the Process of Transformation Model (Dubouloz et al., 2010), the high group, consisting of Barbara and Sue, exhibited characteristics of the second phase, embracing the challenge, and the third phase, integration of new ways of being. In contrast, Olivia and Lexi, the low group, made comments indicative of the first phase, initial response, and a few statements indicative of the second phase, embracing the challenge. Attention to caregivers' phase of adaptation to the role of caregiving would give occupational therapists an opportunity to consider providing services and information to match the caregivers' place in the process. By moving through the entire transformative process, caregivers can improve their quality of life and create a new identity (Barclay-Goddard et al., 2012).
Limitations and Future Research
Although this study offered new insights into the daily activities of caregivers and explored the process of transformational change, several limitations should be acknowledged. Because of the small sample size and the heterogeneous nature of the participants, generalizability of the results is limited. Volunteer bias may have occurred because of the use of convenience sampling, and participation bias could have occurred and influenced the care-givers to make statements and participate in activities that supported the purpose of the research. However, efforts to ensure the anonymity and confidentiality of the participants decreased the likelihood of volunteer bias. Other limitations included the short time frame of the intervention, use of the PPR Profile and the JAE for only 1 day a week for 4 weeks, and the use of brief statements to determine the level of transformational change for each participant.
Future research should involve male caregivers, caregivers of all ages, and people who provide care to loved ones other than a spouse. Subsequent studies also could use the intervention tools for several days within 1 week and for a longer period. In addition, studies should determine whether the gains made during the intervention are sustained over a longer period. Also, focus groups or in-depth interviews would have offered a more reliable indicator for determining the level of transformational change. Finally, additional research is needed to develop a new model or to adapt the Process of Transformation Model to provide a better understanding of how caregivers adapt to the caregiving role.
The goal of this descriptive study was to explore the time use and associated experiences of women who provide care for their spouses and reported clinically significant changes in satisfaction compared with caregivers who did not report these changes. Analysis of time-use diaries and reflective journals suggested that engagement in social participation may be important for women who provide care for their spouses. Participants who had more social interactions and spent more time in social activities experienced increased satisfaction with occupations and may have decreased their perception of caregiver burden. These results suggest the importance of addressing social participation among women who provide care for their spouses. Future studies are needed because of the preliminary nature of these results and the limitations of the study.
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Phases of the Process of Transformation Model: Chronic Illness and Primary Care
|Phase 1: Initial response||Phase 2: Embracing the challenge||Phase 3: Integration of new ways of being|
|DiagnosisPersonal responseResponse of significant others||ChallengeDecision making about embracing the challengeMaking adjustments||Interacting significant discoveries about life, self, and others Heightened sensitivity to life Adoption of a future-oriented perspective to life Greater attention to care of self Integration of disease status into self-definition Self-enhancement Desire to make a meaningful contribution Service to others|
|Examples of comments|
|“I feel like I have to do everything.”||“This week we went out as a couple (first time in 2 years).”||“Today things were equally spaced out with helping my spouse and others, then myself.”|
Pretest and Posttest Performance and Satisfaction Scores and Change Scores on the Canadian Occupational Performance Measure (n = 8)
|Participant||Performance score||Satisfaction score|
Social Participation of Women Who Provide Care for Their Spouses
|Participant||Average hours awake||Average number of social activities||Average hours spent socializing||Timing of social activities (n)||Average pleasure reported (range)||Average restoration reported (range)|
|Suea||16.52||2.75||2.31||Weekday (5)||6.27 (4–7)||5.64 (4–7)|
|Barbaraa||16.13||1.25||2.25||Weekday (5)b||6.20 (3–7)||5.40 (2–6)|
|Oliviac||13.94||0.25||1.00||Weekday (1)b||7.00 (3–7)||7.00 (3–7)|
|Lexic||14.61||0.50||1.13||Weekend (2)||5.50 (2–6)||4.50 (1–6)|
Activities Performed Alone and With Others
|Participant||Alone||With spouse||With others||With spouse and others|
|Number of activities||Hours spent||Number of activities||Hours spent||Number of activities||Hours spent||Number of activities||Hours spent|