INTRODUCTION
Hope is an important psychosocial resource for persons receiving palliative care (Broadhurst & Harrington, Reference Broadhurst and Harrington2015). It has been described as essential for having a meaningful life (Eliott & Oliver, Reference Eliott and Oliver2009) and a peaceful death (Duggleby & Wright, Reference Duggleby and Wright2005). Hope has been described by persons receiving palliative care as the possibility of a better future (Duggleby & Wright, Reference Duggleby and Wright2005). Future in palliative care is defined as moments, hours, or days, as patients experience hope within the context of refocused time (Herth, Reference Herth1993). Hope also has a positive influence on palliative patients’ quality of life (Broadhurst & Harrington, Reference Broadhurst and Harrington2015). In contrast, hopelessness has been associated with feelings of despair and wishes for a hastened death (Mystakidou et al., Reference Mystakidou, Tsilika and Parpa2008; Rodin et al., Reference Rodin, Lo and Mikulincer2009). Thus, finding feasible ways to foster hope in palliative patients may also enhance their quality of life, a major goal of palliative care.
Several studies have reported the effectiveness of a variety of psychosocial interventions in increasing hope in palliative care patients (Ando et al., Reference Ando, Morita and Akechi2010; Duggleby et al., Reference Duggleby, Degner and Williams2007; Guy et al., Reference Guy, Higginson and Amesbury2011; Hall et al., Reference Hall, Goddard and Opio2011; Hansen et al., Reference Hansen, Enright and Baskin2009). These interventions included: (1) forgiveness therapy (Hansen et al., Reference Hansen, Enright and Baskin2009), (2) dignity therapy (Hall et al., Reference Hall, Goddard and Opio2011), (3) short-term life review activities (Ando et al., Reference Ando, Morita and Akechi2010), (4) the opening of a new palliative day care program (Guy et al., Reference Guy, Higginson and Amesbury2011), and (5) the Living with Hope Program (Duggleby et al., Reference Duggleby, Degner and Williams2007).
None of these studies described the experiences of participants while taking part in the interventions. The guidelines of the Medical Research Council (2008) in the United Kingdom for complex interventions suggest that knowledge of the psychosocial processes a participant experiences while taking part in a program or intervention is key to understanding the mechanisms by which the intervention changes behavior. By identifying such processes, an intervention can be refined to increase its effectiveness. For example, qualitative methods have been used to help understand the psychosocial processes that occurred in an asthma self-care intervention and resulted in changes to strengthen the intervention (Denford et al., Reference Denford, Campbell and Frost2013). Studies identifying psychosocial processes that occur with palliative patients during a hope intervention have not been reported as of yet.
The purpose of our study was to describe the psychosocial processes that participants with advanced cancer and receiving palliative care experienced when taking part in a Living with Hope Program (LWHP). Understanding these processes will assist in refining and further developing the LWHP and will also provide insights for other interventions focused on fostering hope in palliative care patients.
The Living with Hope Program
The LWHP for older palliative care patients is a unique hope-focused intervention, as it is specifically tailored and designed for older home care patients with advanced cancer (Duggleby et al., Reference Duggleby, Degner and Williams2007). It was developed based on the “transforming hope” grounded theory (Duggleby & Wright, Reference Duggleby and Wright2005). In this emerging theory, older palliative home care patients described their wish to “live with hope.” The processes identified were: (1) acknowledging “life the way it is,” (2) searching for meaning, (3) positive reappraisal, (4) spirituality, and (5) positive relationships. Based on the findings from our study and using a Delphi approach with an expert panel, hope activities were selected that would assist palliative care patients to “live with hope.”
The LWHP involves: (1) viewing a short 12-minute film showing terminally ill persons and their family members talking about how they maintain their hope and (2) beginning a hope activity over a one-week time period. After viewing the film, participants choose to begin one of three hope activities: (1) writing or asking someone to help them write one or more letters to someone, (2) beginning a hope collection, or (3) beginning an “about me” collection. The first activity of writing or asking someone to help them write a letter involved choosing someone the participants wanted to write a letter to and giving them the letter if they wanted, but did not have to. Instructions for the second activity of beginning a hope collection were to collect anything the participants wanted that gave them hope. These included poems, writings, pictures, photographs, and music. The third activity of beginning an “about me” collection was to begin to tell a story about the participant's life. This story could be written, audiotaped, or a collection of pictures.
The Living with Hope Program was evaluated in a mixed-methods study involving 60 palliative home care patients. We hypothesized that individuals receiving the LWHP would report increased hope and enhanced quality of life due to the intermediary mechanisms of increased spiritual well-being and positive relationships. Measures of hope (the Herth Hope Index [HHI]) and quality of life [the McGill Quality of Life Questionnaire [MQoLQ]) were collected at baseline and repeated one week later in treatment and control groups (Duggleby et al., Reference Duggleby, Degner and Williams2007). A qualitative evaluation of the LWHP was then completed with those in the treatment group. Subjects receiving the LWHP had significantly higher hope (factor 1: temporality and future) (U = 255, p = 0.005) and quality-of-life scores (MQoLQ existential well-being subscales) at day 7 (U = 294.5, p = 0.027) than those in the control group. Qualitative data confirmed this finding, with the majority (61.5%) of subjects in the treatment group reporting that the LWHP increased their hope.
As hypothesized, the proposed mechanism of spiritual well-being was significantly higher in the treatment compared to the control group. The other hypothesized mechanism of positive relationships was not significant. Thus, further exploration was needed to better understand and explore the psychosocial processes that occur during the LWHP. With this new understanding, the LWHP will be revised to strengthen its effect and new mechanisms of change identified.
The purpose of our study was to describe the psychosocial processes experienced by participants who received the LWHP during a pilot study. Qualitative data were collected to explore the psychosocial processes that participants experienced while participating in the program.
METHODS
As part of a mixed-methods pilot study, qualitative interviews were conducted with palliative participants after they started the LWHP at days 7 and 14. They were asked open-ended questions about their hope and experiences working on the hope activity. Their caregivers were also interviewed about their observations to inform the data from the palliative participants. Guest et al. (Reference Guest, MacQueen and Namey2012) applied thematic analysis to address the study purpose. The authors of this specific thematic approach developed it by synthesizing aspects of grounded theory and phenomenology into one methodological framework adapted to an applied research context. Guest and colleagues (Reference Guest, MacQueen and Namey2012) chose to combine what they felt were the most useful and appropriate elements and techniques from these two traditional approaches to develop an approach that would address applied research questions. For example, in our study, using this approach allowed for identification and description of the psychosocial processes involved with the LWHP as themes without developing a substantive theory that is the usual outcome of grounded theory. At the same time, the systematic approach described in grounded theory was applied along with the in-depth description associated with phenomenology. As such, the applied thematic analysis was consistent with our exploratory approach to uncover the psychosocial processes that had not previously been identified. This study was approved by the Health Research Ethics Board of the University of Alberta and the Regina Qu'Appelle Health Region.
Sample/Setting
Palliative home care teams in the North and Edmonton Health Zones in Alberta and the Regina Qu'Appelle Health Region in Saskatchewan identified potential participants, who were asked if they were willing to talk with a research nurse about the study. If they agreed, they were contacted by a research nurse. The inclusion criteria for participants with advanced cancer (palliative participants) required that they be: (1) 60 years of age or older, (2) English-speaking, (3) receiving palliative home care services, and (4) able to complete the study (which was determined by their palliative care coordinator/manager). The inclusion criteria for caregiver participants were: (1) identified by a palliative home care patient as being their primary source of physical and/or emotional support (caregiver), (2) 18 years of age, and (3) English-speaking. The research nurse contacted potential participants, obtained written informed consent, and ascertained convenient meeting times.
A total of 21 dyads of persons receiving palliative care and their caregivers were approached to participate. Eight were unable to participate because of the condition of the palliative participants (i.e., they were confused or their symptoms were not controlled) or their caregiver was too busy. A total of 13 dyads participated in the study. Five of the palliative participants were male and eight female. The average age of palliative participants was 67 years (SD = 6.6), and they reported a mean of 14.2 (SD = 2.7) years of education. They had a range of types of cancers (e.g., breast, colon, esophageal, stomach, prostate, and spinal). The majority were Caucasian (12/13). All were receiving palliative care services.
The average age of caregiver participants was 61 years (SD = 13.9), and they reported a mean of 14.2 (SD = 2.7) years of education. Three caregiver participants were male and 10 female. Six were spouses of the palliative participants, five were daughters, one was a mother, and one a friend.
Data Collection
Written informed consent was obtained from the palliative and caregiver participants. As part of the intervention (LWHP) group, palliative patients chose a hope activity to begin over a one-week timeframe. The first interview occurred one week (day 7) after they began the LWHP and the second interview one week following the intervention (day 14). Interview guides were developed to guide the qualitative interviews. Trained research assistants also employed prompts and requests for further explanations to ensure collection of rich data.
The nature of the questions in the interview guide for palliative participants were as follows:
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What were you thinking about when you worked on the __________ activity?
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Did working on the __________ activity change your hope?
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Why did you think the activity did or did not change or your hope?
Caregiver participants were also asked on days 7 and 14 about their family members’ hope and experiences while working on the hope activity. The nature of the questions in the interview guide were thus:
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Did [name of person] make any comments while working on the hope activity?
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What was [name of person] thinking about?”
Trained research assistants conducted 30- to 60-minute interviews with each participant, and all interviews were audiotaped.
Analysis
All interview data and fieldnotes were transcribed by an experienced transcriptionist. A total of 52 interviews were analyzed. Thematic analysis (Guest et al., Reference Guest, MacQueen and Namey2012) was utilized to analyze the qualitative data to uncover the psychosocial processes experienced by participants within the LWHP. The interview data from palliative participants were analyzed first. Caregiver participants’ data were then analyzed and used to inform palliative participants’ data. Transcripts were read and reread as a whole with the focus of the analytic objective (identifying processes) in mind. Then, as the focus of the data analysis was to identify psychosocial processes that occurred during the intervention, the data were grouped into themes that reflected these processes using a constant comparative approach. The data were initially grouped according to the three hope activities to determine if there were differences in the findings across activities. The activity chosen did not appear to influence the findings regarding psychosocial processes. Trustworthiness of the data was determined by using participants’ words as much as possible and by keeping an audit trail.
RESULTS
Throughout the interviews, palliative participants described a roller coaster of symptoms: fatigue, pain, and memory loss, as well as anxiety and fear. Within this context, these participants also talked about hope as being focused on quality of life rather than on a cure. For example, one stated that his hope was for quality of life after death: “I better hope to see a quality life next life.”
In order to identify what psychosocial processes were occurring while participating in the LWHP, the qualitative questions focused on the activity the participants chose to complete. Five patients chose to write letters, three chose to start a hope collection, and five chose to begin an “about me” personal biography. The findings represented data from all the participants, even though different hope activities were chosen, as initial analysis confirmed that the hope activity chosen did not influence the psychosocial change processes that occurred.
Analysis of qualitative data yielded four specific processes that were associated with the LWHP: (1) reminiscing, (2) leaving a legacy, (3) positive reappraisal, and (4) motivating processes.
Reminiscing
Palliative participants described reminiscing as they worked on their hope activity. This process included thinking and reflecting about the past. For example, one palliative participant stated that completing the hope activity provided her the opportunity to “figure out what has gone on in my life.” Another caregiver participant said, “Uh, what I like the best is that I think it gave [name of person] the opportunity to look at things in a different way, and sort of to evaluate life in a different way.” This suggests that reminiscing was helpful in evaluating their life.
Reminiscing helped some participants to recall happy memories. As one caregiver participant noted about their family member,
She said how much fun it was, how memorable things were, how it made her totally remember fun things, good times, and it was good thing to do.
However, one palliative participant reported that she had not had a happy life, and therefore the process of reflecting on her life brought up painful memories.
Several palliative participants stated that reminiscing was not something they had been taking the time to do prior to the study. As one palliative participant stated, “I'd never done anything like this for me.” Another stated that
It actually made me get excited, because, uh, I thought, well, I'd never done something like this for me. I've always worked on albums and things for others, so I was actually kind of excited about this, and, um, thinking about all the other different things I could put into this scrapbook. So that's what I was thinking about.
An important aspect of this process identified by participants was taking the time to focus and do something for themselves instead of for other people. In other words, the reminiscence process was a personal life review that was viewed as something participants were doing for themselves.
Leaving a Legacy
The process of leaving a legacy was described by palliative participants as a desire to leave something behind for family members and future generations. Examples of this process included participants commenting that they “should do an autobiography of the family history, and so forth,” and the importance of leaving something behind “so that somebody could read and understand.” One palliative participant talked about the value in an activity that prompted her to take time and write down her thoughts so that they could be shared with others:
It encouraged me to, uh, place some of these thoughts that I've mentioned to you, uh, down on paper in a concrete way so that, uh, it could be shared with other people.
One palliative participant reported that she was thinking about her family, specifically her grandchildren, while working on her hope activity: “It's because you're doing something that's involving your family, even if they're not here.” Thinking about future generations was also reflected in caregiver participants’ comments as well. For example, as one caregiver participant noted,
He's lived 80-plus years, and even after we're both gone, the world goes on in our children, and they benefit from so much that—that we passed on to them. Yeah, I think it—it has, and it will.
Leaving a legacy was something they were doing for others, and at the same time it was something that helped them to find value in life.
Positive Reappraisal
For palliative participants, positive reappraisal occurred as they identified how participation in the LWHP encouraged them to think about hope and other positive thoughts and feelings. For example, one participant noted how “when you're in the midst of having cancer, you don't really even think about, like hope and all that stuff.” For another participant, just talking about their hope helped to increase it: “I think when you, um, verbalize or share your hope with somebody else, it increases your hope, and makes your hope stronger and more ingrained in you.”
Palliative participants described how working on the hope activities helped them think about positive aspects of their lives. For example, as one participant noted,
It makes you think a little more about the good things you do have. Uh, yeah, just the good things you do have. It's easy to focus in on the bad, so even a moment of reprieve, of thinking about good stuff, is—is nice.
Another palliative participant stated, “and when I'm looking at poems, I'm able to look at them and feel much more optimistic.” The ability to focus on positive thoughts while working on the hope activity was important to palliative participants.
Caregiver participants also suggested that the study encouraged them to think about their own hope: “We started looking at, like anything that makes us think a little bit more about hope.” Another caregiver participant commented on the positive interaction it fosters: “The other thing I like about it is, I got to listen to my wife's answers, and I get— and I feel a little more hope there, too [laughs].” These data suggested a relationship between the hope of family caregivers and palliative participants, and that fostering the hope of family caregivers may also be an outcome of the LWHP.
Motivating Process
The motivating process reflects how the LWHP prompted many palliative participants to undertake activities they had been putting off in their personal lives. They appreciated this “push” to complete their hope activities that their involvement in the LWHP provided. As one palliative participant reported:
To have somebody kind of pushing you—not pushing you personally, but—to have a commitment that I said I would do this, because these are letters I've been, you know, batting around in my mind for a while to write and, and it actually made—gave me that little bit of support to, okay, now's the time to—now's the time to write these letters.
This sentiment was also reflected in the words of another palliative participant:
I did once in a while think that I should do an autobiography of the family history and so forth, but I—I never went into it, and … this program here that you've got kind of got me started on it.
Thus, the hope activities appear to provide a useful framework or structure from which participants could begin to engage in projects they wished they had started a long time ago.
DISCUSSION
Four psychosocial processes (reminiscing, leaving a legacy, positive reappraisal, and motivating processes) occurred while participants were participating in the LWHP. These processes had not been previously identified as occurring during intervention studies that fostered hope.
Reminiscing
Our participants identified reminiscing as a life review process that occurred during the LWHP. It helped them to not just review their life, but also to evaluate it with a different perspective. Reminiscence is the recall of memories about one's own life (Westerhof et al., Reference Westerhof, Bohlmejer and Webster2010). Westerhof and coworkers (Reference Westerhof, Bohlmejer and Webster2010), following an extensive systematic review of research studies focusing on reminiscence, suggested that in its simplest form it stimulates social reminiscence and bonding and promotes positive feelings.
Reminiscing has also been linked to hope (Ando et al., Reference Ando, Morita and Akechi2010; Duggleby & Wright, Reference Duggleby and Wright2005). In their study of hope in older palliative patients, Duggleby and Wright (Reference Duggleby and Wright2005) described reminiscing as one of the processes associated with finding meaning and purpose. In a study evaluating a “short-term life review” intervention with palliative patients, hope was found to be significantly increased in the treatment group as compared to a control group (Ando et al., Reference Ando, Morita and Akechi2010). Theses authors suggested that life review increases hope by helping participants find meaning in their lives.
Leaving a Legacy
In contrast to the individual inward-looking reminiscing processes, our participants described “leaving a legacy” behind for others. “Leaving a legacy” was also identified by Duggleby and Wright (Reference Duggleby and Wright2005) in their grounded theory study as something associated with hope through the process of finding meaning. Moreover, dignity therapy incorporates legacy work (Lindquist et al., Reference Lindquist, Threlkedl and Street2015) with the purpose of increasing a sense of meaning and purpose for persons who are terminally ill. After receiving dignity therapy, participants have been found to have significant increases in their hope scores compared to baseline (Hall et al., Reference Hall, Goddard and Opio2011).
The processes of “leaving a legacy” and reminiscing as described by our study participants may increase hope through finding meaning and purpose. Finding meaning and purpose has been reported in other studies to be an important process in terms of hope (Benzein et al., Reference Benzein, Norberg and Saveman2001; Duggleby & Wright, Reference Duggleby and Wright2005; Mattioli et al., Reference Mattioli, Repinski and Chappy2008; Mok, Reference Mok2010; Sanatani et al., Reference Sanatani, Schreier and Stitt2008). In a metasynthesis of 20 qualitative studies of terminally ill persons, searching for meaning also involved reflecting upon what was important to participants and examining their lives and priorities (Duggleby et al., Reference Duggleby, Hicks and Nekolaichuk2012). In that metasynthetic study, finding meaning and purpose was an important aspect of the overall transformative hope process of transcendence. Transcendence is a process through which people move beyond their current situation to a broader awareness of others (Reed, Reference Reed, Smith and Liehr2008). Other processes related to transcendence involve searching inwardly to past experiences, values, and beliefs, and reaching out to others. The LWHP may also foster the process of transcendence, as the processes of reminiscing and leaving a legacy were identified. Reminiscing involves an inward process and leaving a legacy an outward-looking process.
Positive Reappraisal
Our participants described the process of positive reappraisal while participating in the LWHP in terms of finding the positive aspects of their lives (present and future). Positive reappraisal was also described as a transformative process of hope in “transforming hope” grounded theory (Duggleby & Wright, Reference Duggleby and Wright2005) and in a metasynthetic study of hope (Duggleby et al., Reference Duggleby, Hicks and Nekolaichuk2012). Persons with a terminal illness reevaluated their hope in light of their situation. With this reevaluation, there was a recognition that they needed to reframe or, for some, to transform their hope. This would only occur if persons with terminal illness were able to see the positives in their situation and in their future. Cognitive reappraisal theory suggests that positive reframing of an event may decrease stress and depression (Lazarus & Folkman, Reference Lazarus and Folkman1984; Troy et al., Reference Troy, Wilhelm and Shallcross2010). Thus, the process of cognitive reappraisal experienced by participants while taking part in the LWHP may have contributed to increased feelings of hope and enhanced quality of life.
Motivational Processes
An unexpected finding was the motivating processes associated with the LWHP. Participants described feeling motivated by beginning to work on one of the three hope activities. Motivational processes associated with hope have been reported in studies of persons with spinal cord injuries (Chan et al., Reference Chan, Chan and Ditchman2013; Smedema et al., Reference Smedema, Phillips and Chan2014). In these studies, the motivational hope processes resulted in an increase in participation in life and life satisfaction. Although the LWHP has not been evaluated using life-satisfaction scales, the presence of the motivational processes described by participants would suggest that this may be the case. Future research should explore this possibility.
Snyder (Reference Snyder2000) suggested that motivational theories such as self-efficacy (Bandura, Reference Bandura1977) are similar to the pathways of hope. Self-efficacy has been found to have a significant positive relationship with hope and quality of life (Duggleby et al., Reference Duggleby, Doell and Cooper2014). It is possible that general self-efficacy, or the confidence in one's ability to deal with difficult situations (Schwarzer & Jerusalem, Reference Schwarzer, Jerusalem, Weinman and Johnston1995) (such as living with hope when you have advanced cancer), may be another LWHP mechanism. LWHP activities are focused on helping participants find the positive aspects of their situation. This focus could contribute to increasing participants’ confidence in their ability to deal with difficult situations. However, how the LWHP may increase self-efficacy is unclear and requires further study. As such, further research is needed to understand this relationship. Future study should also include self-efficacy when evaluating the LWHP as a mechanism through which increasing hope and enhancing quality of life are achieved.
LIMITATIONS OF THE STUDY
Several limitations are associated with the study, including participant demographics and the methodology employed. Participants were mostly Caucasian and receiving palliative care services. Populations with more diverse ethnic backgrounds and/or those who do not have the support of palliative care services may experience the LWHP differently. Future research should determine if this is the case.
Convenience sampling, rather than purposive or theoretical sampling, was used to recruit participants for our study. This limited the approach, as more interpretive qualitative methodologies would require purposive and theoretical sampling. More interpretive methodologies could potentially achieve a richer understanding of the hope processes that occur during the LWHP.
CONCLUSION
Using qualitative inquiry to uncover the psychosocial processes experienced by participants when taking part in the LWHP suggested that hope was fostered through reminiscing, leaving a legacy, positive reappraisal, and motivating processes. Reminiscing and leaving a legacy may be aspects of finding meaning and purpose. As participants did not identify the process of searching for meaning and purpose per se, this aspect should be strengthened in the LWHP. The processes of cognitive positive reappraisal and motivating processes also occurred and should be considered mechanisms of the LWHP.
The processes identified have provided insight into the mechanisms by which the LWHP fosters the positive outcomes of increasing hope and enhancing quality of life and lays the foundation for future research. As well, the finding of motivational processes suggested that the LWHP may also increase life satisfaction. The findings from our study underscore the importance of uncovering the psychosocial processes through which interventions succeed, as they will not only assist with revisions to the intervention to increase its effectiveness, but will also further our understanding of the concept upon which the intervention is based.
ACKNOWLEDGMENTS
We received University of Alberta Bridge Funding. We would like to thank all those who assisted with our study: Regina Qu'Appelle Health Region Palliative Care Program, PPRISM Clinic, North Zone Home Care Program, Cross Cancer Institute Pain and Symptom Control Clinic, and Judith Gagnon, who served as a research assistant.
