Self-compassion and mood fluctuations amongst cancer patients
Ruben Schouten
Student number: 1810693
Masterthesis1st supervisor: Dr. C.H.C. Drossaert 2nd supervisor: Msc, J. Austin
Department of Psychology, Health and Technology Faculty of Behavioral, Management and Social Sciences
University of Twente
Abstract
Introduction: The diagnosis of cancer brings a lot of physical and psychological difficulties.
Self-compassion can help alleviate these problems, but it is unclear which levels of self- compassion are apparent and whether they fluctuate, or are stable over time.
Method: Participants were recruited from two different hospitals by oncology nurses. By
applying the experience sampling method (ESM) we study the diurnal patterns of participants by sending a questionnaire through the participants’ Smartphone four times a day (at random times during specific timeslots) for a week.
Results: Mood and self-compassion strongly positively correlated with each other (p<0.001).
No clear diurnal pattern could be found. Mornings, early afternoon, late afternoon, or evening did not show significant differences on various days for either self-compassion or mood.
Conclusion: Although this study was limited in its sample size, the usage of the experience
sampling method slightly made up for it by bringing many data points per respondent compared
to cross-sectional research. The experience sampling method was the strength of the study, by
allowing to depict the diurnal patterns, and giving insight into how this changes for patients
with cancer. Cancer patients show some variance within and between days for mood and self-
compassion. It was found that self-compassion correlates strongly with both positive mood, and
negatively with negative mood over time.
Overview
1. Introduction ... 4
2. Method ... 7
2.1. Setting ... 7
2.2. Participants & Procedure ... 7
2.3.ESM distribution ... 8
2.3.1. ESM questions ... 8
2.4. Data analysis & Data preparation ... 10
3. Results ... 11
3.1 Description of the study group ... 11
3.2 Description of the main variables ... 12
3.3 Relationship between self-compassion and mood ... 13
3.4 Diurnal patterns of mood... 14
3.5. Diurnal patterns of self-compassion... 16
3.6. Debriefing questionnaire ... 17
4. Discussion ... 19
4.1. Recommendations for further research ... 20
4.2. Strengths ... 21
4.3. limitations... 22
5. Conclusion... 23
Literature ... 24
Appendix 1: Informed Consent (Qualtrics) ... 27
Appendix 2: Information letter ... 28
Appendix 3: Experience sampling questions ... 34
Appendix 4: Experience Sampling questions in Qualtrics (Desktop) ... 35
Appendix 5: Experience sampling questins in Qualtrics (Mobile) ... 39
Appendix 6: Tables of the Linear Mixed Methods ... 44
Appendix 7: Individual item analysis graphs ... 54
1. Introduction
The diagnosis of cancer can bring many challenges for a patient. Difficulties such as going through medical procedures, having a loss of energy, pain, and trouble with sleeping (Dekker
& de Groot, 2018; Stark et al., 2012) can have a big impact on a person. In addition, cancer often includes a wide range of psychological consequences such as uncertainty about the future, anxiety & depressive symptoms, and avoidance of physical activity (Kwakkenbos et al., 2014;
KWF, 2018; Glauss et al., 1996; Bukberg et al., 1994). Overall, patients with cancer are at an increased risk for psychological and physical complaints, which might lower their quality of life (Bjordal et al., 1999; Pinto-Gouveia et al., 2014).
One concept that can help cancer patients cope with some of these difficulties is self- compassion. According to Neff (2003a, 2003b, 2007): self-compassion refers to a wise and kind attitude towards oneself in times of difficulty and the ability to be sensitive to personal suffering. Self-compassion consists of three interrelated components: self-kindness, common humanity, and mindfulness. Self-kindness refers to being gentle and understanding towards ourselves when confronted with painful experiences rather than responding with anger or frustration when something does not go your way. Being imperfect, failing in life’s difficulties is an inevitability, so therefore it can be more rewarding to accept it rather than denying or fighting it. Common humanity involves a sense that suffering is part of the human experience which humans all go through. Recognizing this and accepting our inadequacies is acknowledging the shared human experience. Mindfulness refers to awareness of painful experiences. This awareness stems from relating personal experiences to that of others who are suffering, therefore putting a personal situation into the larger perspective. It is also about being non-judgmental and being able to observe thoughts and feelings as they come without suppressing them. In short, self-compassion is defined as being kind towards yourself while being less self-critical and could benefit cancer patients as a way to cope with some of their difficulties.
How does self-compassion fit in with the psychological consequences following a cancer diagnosis? Many studies have shown that self-compassion is negatively related to distress and positively related to well-being. Self-compassion also relates negatively to negative affect and psychological symptoms such as depression, anxiety, and stress (Barnard & Curry, 2011; Ehret et al., 2014; Hofmann et al., 2012; MacBeth & Gumley, 2012; Muris et al., 2015; Johnson &
O'Brien, 2013). Self-compassion can be used as a buffer to protect against mental health
problems, especially for those who have lower self-esteem (Marshall et al. 2015; Neff et al,
2007; Pinto-Gouveia et al., 2014). Other studies also confirmed that positive mental health or wellbeing can protect against psychopathology, with higher levels of self-compassion promoting resilience against psychopathology (Trompetter, De Kleine & Bohlmeijer, 2017).
Zhu et al (2020) found that self-compassion is closely linked to cancer patients’ depressive &
anxiety symptoms with perceived consequences (of cancer) playing a mediating role.
Furthermore, self-compassion helps reduce self-criticism, (Campos et al, 2012; Neff et al, 2007) which is helpful since cancer patients tend to be overly critical about themselves (Vlierberghe, 2019). Although studies have shown the mediating effect of self-compassion against psychopathology, little is known about how self-compassion changes over time and how it relates to mood for cancer patients. Yet, these insights could help create a better understanding of how and when self-compassion protects patients against psychopathology.
One psychological aspect that cancer patients experience is fluctuations in mood and symptoms.
Some patients experience depression and anxiety right after diagnosis, while others might experience mood changes during treatment (Cardoso et al., 2016). Depressive symptoms are common during the period after patients have gotten the diagnosis of cancer. One article found that from a group of early-stage breast cancer patients that 36% of them met (shortly after diagnosis) the criteria for depressive disorders (Love et al., 2002). For patients with depression, it is known that diurnal changes in mood are very present. Meaning that there is a fluctuation in the severity of symptoms with mornings being associated with stronger symptoms, and the evening with slightly stronger symptoms (Rusting & Larsen, 1998). Diurnal mood variation with early morning worsening is, according to the Diagnostic and Statistical Manual 5
thedition (American Psychiatric Association, 2013), a classic symptom of melancholic features of major depressive disorder (Morris et al., 2009). Although a lot of research has been done on diurnal mood variations among people with depression, there has not been any research about diurnal mood variations among people who were diagnosed with cancer. Since diurnal mood variation is common among people with depression, finding these same patterns could lead to help diagnosing depression among cancer patients if they show similar patterns.
Traditional cross-sectional research is not a fitting method to research diurnal patterns because it does not include multiple assessments on the same day. A research method that does take into account the diurnal fluctuations is the experience sampling method (ESM). ESM is a longitudinal research method that assesses participants multiple times a day but for a shorter period, making it possible to measure diurnal variations (Shiffman et al., 2008, Bolger &
Laurenceau, 2013). Due to an increase in smartphone usage (Statista, 2020), which enables
people to take multiple assessments a day more easily with the use of push notifications, ESM has seen a rise in popularity. During these assessments, people describe what they are feeling, what they are thinking, or their behavior (Larson, Prescott & Czikszentmihalyi, 2014; Larson
& Csikszentmihalyi, 1983; Hormuth, 1986). The ESM is designed to encapsulate momentary assessment ratings of experiences, which makes it valuable for the assessment of mood or symptoms which are very dynamic and can change over time (Ebner-Priemer et al., 2009).
Multiple studies have shown that significant differences can be found between retrospective assessment and real-time assessment when it comes to measuring mood (Solhan et al., 2009).
In conclusion, the ESM is a fitting method to measure diurnal patterns due to the multiple assessments on the same day for a longer period.
From the previous introduction, the following research questions have been established 1. What is the longitudinal relationship between self-compassion and mood?
2. What are the diurnal patterns of mood for cancer patients?
3. What are the diurnal patterns of self-compassion for cancer patients?
2. Method
To answer the research questions, the experience sampling method (ESM) was applied. ESM is an ecologically valid method that allows assessing various constructs and psychological mechanisms at the moment (Verhagen et al., 2016). ESM is an intensive longitudinal research methodology that involves asking participants to report on their thoughts, feelings, and behaviors multiple times a day for a set period. For this study, multiple questionnaires were filled in four times a day during specific timeslots for seven days. To increase the fill-in rate of the questionnaires, micro-incentives were employed.
2.1. Setting
This study was part of an overarching research-study about a self-compassion app for patients with cancer. Participants (patients who recently got diagnosed with cancer) of that study were asked if they wanted to try out an app that teaches them about self-compassion. In essence, it is a 6 week-long self-compassion training that addresses a different theme of self-compassion each week. Examples of the themes are; (1) being kind to yourself; (2) dealing with anxiety and insecurity; (3) taking care of your body; (4) asking for support from others and setting boundaries; (5) experiencing positive sides of life. Participants were required to use the app for two hours each week. The start of the ESM study was done after the participant had access to the self-compassion app for 3 weeks. That way it corresponded with the available module of the app which informs participants about being self-critical, an aspect within the concept of self-compassion.
2.2. Participants & Procedure
The aim was to recruit 20 participants from two different hospitals through the oncology nurses.
This became 11 participants because of difficulties in recruitment. The oncology nurses informed the participants about the study “zelfcompassie bij kanker”. The two participating hospitals were the MST (Medisch Spectrum Twente) in Enschede and the UMCG (Universitair Medisch Centrum Groningen) in Groningen. The inclusion criteria were that the participants need to be aged 18 and older and recently (within 12 months) gotten any cancer diagnosis and were treated with curative intent. Participants also needed to be proficient in Dutch, have a Smartphone, computer, or tablet at their disposal, and were willing to try out the app for 2 hours per week and fill in questionnaires.
The procedure first started at the hospital. Nurses were informed about the research and are
given the most important points of the research and the app as well as a brochure. On the
brochure, there is a QR-code and web-link that direct towards the website of the study. The
prospective participants can register for the study through the website. During this registration, the data of first names, last names, hospital, and phone numbers were collected.
After they gave their informed consent, they were able to participate in the study. The informed consent also included information about the current ESM study. In the informed consent, on the website and after 1-week participation with the app the participants were informed about the additional micro-incentives they could earn when filling in the ESM questionnaires. This was done to increase the adherence and fill-in rates of the ESM questions (Musthag et al., 2011;
Singer & Ye, 2013).
2.3.ESM distribution
A short survey of 7 questions was established in Qualtrics, a web-based survey program, and used to repeatedly distribute among the participants. The survey was filled in four times a day for seven days (28 time points). The distribution of the survey was done on 4 different
timeslots throughout each day: first timeslot (09:00 – 11:50), second timeslot (12:10 – 14:50), third timeslot (15:10 – 17:50), and fourth timeslot (18:10 – 21:00). A random number
generator was used (random.org) to create random times within each time slot, thus creating 28 unique times for distribution. The duration of the ESM questions was set on seven days with the eighth day being used for the debriefing questionnaire. This aligns with the advice from Csikszentmialy et al (2007) for having a minimum of a week for the ESM questions to have a representative sample of the feelings of the participants.
The distribution of the ESM questions was through the instant messaging app WhatsApp.
WhatsApp was chosen because it was already widely utilized, thus lowering the burden for participants by not having to familiarize themselves with another new application, and used in conjunction with the scheduling app SKEDit. SKEDit allows the user (researcher in this case) to schedule messages and also repeat the messages at a time interval. The message contained a brief statement and a link to the Qualtrics survey. A possible message might look like this:
2.3.1. ESM questions
Only seven questions were used in creating the questionnaire. That is because the ESM works best with a short survey. If longer and validated constructs were taken from another survey, the assessment might be too exhausting for participants since they need to answer all the questions
“Here are the daily questions”
university.eu.qualtrics.com/jfe/form/SV_example
multiple times a day. Mood was measured with items 1 – 4 of the questionnaire. The constructs were not taken from an existing validated survey but were inspired by the Profile of Mood States Questionnaire (POMS). This is also because standardized ESM item sets with evidence- based psychometric criteria are not available (Haynes & Yoshioka, 2007). Self-compassion was measured with items 6 and 7 of the questionnaire (see table 1 for the full items). Physical wellbeing (item 5) was measured with a single item, “I feel physically well at this moment”.
This item has not been used for the current study. All items within the survey had a forced response so there were no partially filled-in surveys. Participants were excluded from this study if they filled in less than 50% of the total amount of questionnaires (time points). The questions in Qualtrics were randomized - meaning that the order of the questions is different each time the survey is started - to prevent order bias.
Although item 5 showed high internal consistency, it has fewer ties with the concept of mood than the other 4 items. Cronbach’s Alpha of the 4-item mood scale was 0.86 and the Alpha of the 2- items self-compassion scale was 0.79 (table 3). No items were deleted to reach a sufficient Cronbach’s Alpha.
Table 1
The 2 constructs with their underlying items and choice of answers translated to English
Mood Totally not Somewhat not Neutral Somewhat Totally
Item 1: “I feel Cheerful at this moment” 1 2 3 4 5
Item 2: “I feel Anxious at this moment” 1 2 3 4 5
Item 3: “I feel Sad at this moment” 1 2 3 4 5
Item 4: “I feel calm at this moment” 1 2 3 4 5
Item 5: “I feel Physically well at this moment” 1 2 3 4 5
Self-compassion
Item 6: “At this moment I am Kind towards myself”
1 2 3 4 5
Item 7: “At this moment I am Self-Critical” 1 2 3 4 5
On the eighth day, participants received a debriefing questionnaire. It consisted of five
questions about whether the ESM questions had any influence on the participants’ behavior,
feeling, and thoughts, in addition to asking whether they experienced technical difficulties
(regarding the ESM questionnaires) during the past week. These questions were asked to check
whether the ‘daily life’ of the participant was, in any way, influenced by the ESM questions and if their behavior, thoughts, or feelings were therefore influenced (Hormuth, 1986).
2.4. Data analysis & Data preparation
Data was cleaned up by removing unnecessary columns of data that Qualtrics automatically tracks. Additionally, the data about the respondent’s name was transformed to a unique identifier to anonymize it. Qualtrics also tracks starting date and end date of the survey. Only the end-date is necessary as this will be used to create the variable ‘Time’ which translates to date plus the exact moment when the survey was finished. A final variable that is needed for ESM-data-analysis is ‘Timepoint’. This variable indicates the chronology of the ESM question that is answered. For example: If the ESM question for a particular respondent started on Monday, then the first ESM question that is distributed and answered can be indicated by 1 (first day, first ESM time), which continues further until 28 (last day / Sunday, fourth ESM time of the day). Item 2, 3, and 7 were recoded as they were negative, meaning a high score on these questions did not cohere with the other questions in the construct (more positive mood or higher amount of self-compassion).
The Statistical Program for Social Sciences (SPSS) 26
thedition was used for the data analysis
and creating the graphs. A univariate general linear model was used to estimate the marginal
means of the construct's mood and self-compassion. Finally, the time point was set as a fixed
factor to estimate marginal means for the time point and to compare the information about the
different data points over time within and between the participants. This shows how self-
compassion and mood vary over time. The same univariate general linear model was used for
the single item analysis. Linear Mixed-Methods was used to highlight differences of various
timepoints compared to the intercept, also the output SPSS provided showed descriptive
statistics of each timepoint and respondent. One-way ANOVA tests were used to examine
whether different timepoints and timepoints had different group means, independent samples t-
test was used after a significant group mean was found with one-way ANOVA to examine the
different times of the day.
3. Results
3.1 Description of the study group
From the 11 participants that engaged in this study, six were used for data analysis based on the exclusion criteria. The other 5 participants did not fill in enough questionnaires and were not included.
The mean age of the participants was 43 years, with all 6 of them being female (Table 2). Three participants were employed, two participants were on sickness benefit and one was unemployed by illness not caused by cancer. All of the participants had the Dutch nationality. Education level was spread out evenly with 2 participants having lower education, two middle education, and two having completed higher education. Throughout the study, questions were filled in 144 times by the 6 respondents. The total response rate of the ESM questions (after exclusion) was 86%.
Table 2
Demographics of the participants (N=6)
Item Category Frequency %
Gender Male 0 0
Female 6 100
Age 65+ 0 0
55 - 64 1 16.67
45 - 54 3 50
35 - 44 0 0
25 - 34 1 16.67
18 - 24 1 16.67
Nationality Dutch 6 100
Educational level Higher (HBO+) 2 33.33
Middle (MBO) 2 33.33
Lower (-MBO) 2 33.33
Occupation Employed 3 50
Sickness benefit 2 33
Unemployed 1 16.67
Self-employed 0 0
3.2 Description of the main variables
The descriptive statistics of the main variables Mood, Self-compassion, and their underlying items are shown in table 3. Mood has a mean score of 3.74 (SD=0.89) with a minimum of 1.5 and a maximum of 5. Self-compassion has a mean score of 3.72 (SD=1.04) with a minimum of 1 and a maximum of 5. A positive mood and a high amount of self-compassion overall, considering that the participants are experiencing a potentially life-threatening illness.
All mean scores of mood and self-compassion over time are shown in Figure 1. Participants scored the highest mood on time point 27 with the mean being 4.38 (SD=0.41), this measurement was the late afternoon (third timepoint) of Sunday and was measured between 15:10 – 17:50. The lowest timepoint was on 22 (M=2.75, SD=0.41. Timepoint 22 was the early afternoon (second timepoint) on Saturday (12:10 – 14:50). Participants scored the highest amount of self-compassion on time point 6 with the mean being 4.5 (SD=0.5), this measurement was the early afternoon (second timepoint) on Tuesday and was measured between 12:10 – 14:50. The lowest self-compassion was measured on timepoint 15 with a mean of 2.9 (SD=1.52). This was the late afternoon (third timepoint) on Saturday.
Table 3
Constructs with Cronbach’s Alpha, number of items for the constructs, number of data points for each construct or item, mean (+SD), and underlying items with their mean (+SD) and each min-max score with the range
Construct Cronbach’s
Alpha
No. of items
No. of data points
Mean (SD) Min – Max (Range)
Mood (Scale of items 1 - 4) 0.86 4 144 3.74 (0.89) 1.5 – 5 (3.5)
Item 1: “I feel Cheerful at this moment - - 144 3.55 (1.01) 1 – 5 (4) Item 2: “I feel Anxious at this moment”
1- - 144 2.12 (1.16) 1 – 5 (4)
Item 3: “I feel Sad at this moment”
1- - 144 2.35 (1.09) 1 – 5 (4)
Item 4: “I feel Calm at this moment” - - 144 3.88 (1.01) 1 – 5 (4)
Item 5: “I feel Physically well at this moment” 144 3.26 (1.22) 1 – 5 (4)
Self-compassion 0.79 2 144 3.72 (1.04) 1 – 5 (4)
Item 6: “At this moment I am Kind towards myself”
- - 144 3.82 (0.97) 1 – 5 (4)
Item 7: “At this moment I am Self-Critical”
1- - 144 3.12 (1.23) 1 – 5 (4)
1
= reverse-coded in computing the scale scores, but the raw data was used for displaying
them individually in the table
3.3 Relationship between self-compassion and mood
The first research question was: “What is the longitudinal relationship between self-compassion and mood”. Figure 1 shows that self-compassion and mood are closely related over time. And only diverting slightly at measure points 25, 26, and 27. Measure point 25, 26 and 27 are from Sunday 09:00 – 11:50 (25), 12:10 – 14:50 (26), and 15:10 – 17:50 (27). Although self- compassion was equal on measure point 28 (evening on Sunday) it shows that Sunday could be tied to lower self-compassion relative towards mood while staying equally the same throughout the rest of the week. Figure 2 shows how self-compassion and mood are similar among the different respondents.
Figure 1
Self-compassion and mood over time
Figure 2
Histogram of self-compassion and mood, divided by respondents
To investigate if there is also a cross-sectional relationship between Self-Compassion and Mood a bivariate Pearson correlation test was conducted (n=144). Self-compassion and mood were found to be strongly positively correlated, r = 0.68, p < 0.001. This is also reflected in Figure 1 where the lines of self-compassion and mood are closely related over time. This implies that self-compassion and mood strongly correlate with each other across the 28 timepoints.
3.4 Diurnal patterns of mood
The second research question was: “What are the diurnal patterns of mood for cancer patients?”. Figures 3 & 4 show that mood for cancer patients has fluctuated throughout the day.
Most respondents report a positive mood on most timepoints as only three timepoints had a score below 3 (timepoints 15, 2 & 22). The intercept of the construct Mood was 3.44. (see Appendix 6). None of the timepoints differed significantly from the intercept. Timepoint 6 (+1.06) shows the biggest difference.
The lowest mood was on timepoint 22 (early afternoon on Saturday) with a mean score of 2.75 (n=144). The highest mood was on measure point 6 (2
ndmeasurement on Tuesday, mean score
= 4.5, (n=144). Figure 3 shows the fluctuations of mood for participants over time while figure
4 shows the estimated marginal means of the respondents over time. In figure 3, all six
respondents are shown with broken lines to showcase the missing values whenever a survey was not filled in during a particular timepoint.
It also shows a drop in mood from measure point 20 towards measure point 22. This is from Friday to Saturday meaning that the beginning of the weekend on Friday evening is tied to a high mood while Saturday morning has a low mood, which steadily climbs up until Sunday.
However, on the final timepoint (28, Sunday evening) it drops again showing that Sunday morning and afternoon are tied to a higher (positive) mood while the evening shows a sharp decrease in mood. The prospect of the upcoming week could be related to this, and the pattern continues on Monday until it reaches a peak in positive mood on Tuesday.
To investigate whether there are differences between the times of the day, a one-way ANOVA was conducted to compare timepoint per day 1 (morning), 2 (early afternoon), 3 (late afternoon), and 4 (evening). There were no statistically significant differences in mood, between the different times of the day as determined by one-way ANOVA (F=0.182, p=0.908).
Individual items were also analyzed to investigate whether there are differences between the times of the day. One-way ANOVA was conducted on each item to compare the timepoints per day. No statistically significant difference in either individual item (cheerfulness, sadness, anxiety, or calmness) was found. See Appendix 7 for the individual graphs and the analyses.
Figure 3
Mood over time for each participant
Figure 4
Estimated marginal means of mood throughout the week
3.5. Diurnal patterns of self-compassion
The 3rd research question was: “What are the diurnal patterns of self-compassion for cancer patients?”. Figure 5 shows that self-compassion has a slight fluctuation throughout the day Figure 6 shows the fluctuations of self-compassion for the individual respondents and depicting them with broken lines to showcase missing values on specific timepoints. There is a low point on timepoint 15 (late afternoon on Thursday, mean score = 2.9, SD=1.52) and a high point on timepoint 6 (early afternoon on Tuesday, mean score = 4.5, SD=0.5). Another low point further down the week is on timepoint 23 (early afternoon on Friday, mean score = 3.13, SD=1.44).
To investigate whether there are differences between the times of the day, a one-way ANOVA
was conducted to compare timepoint per day 1 (morning), 2 (early afternoon), 3 (late
afternoon), and 4 (evening). There were no statistically significant differences in self-
compassion, between the different times of the day, as determined by one-way ANOVA
(F=0.138, p=0.937). Individual items were also analyzed to investigate whether there are
differences between the times of the day. One-way ANOVA was conducted on each item to
compare the timepoints per day. No statistically significant difference in either individual item
(self-critical and self-kindness) was found. See Appendix 7 for the individual graphs and the
analyses.
Figure 5
Estimated marginal means of Self-compassion throughout the week
Figure 6
Self-compassion over time for each participant
3.6. Debriefing questionnaire
The debriefing questionnaire consisted of five questions about whether the ESM questions had
any influence on the participants’ behavior, feeling, and thoughts, and if any technical
difficulties were experienced during the past week.
Most respondents reported that the past week was a ‘typical’ week except for one participant mentioning that she had chemotherapy. Most respondents answered that the ESM questions rarely affected them in their feelings, thoughts, or behavior (median = 4). However, an explanatory statement following this question showed that most respondents remarked that they became more conscious about how they were feeling by filling in the ESM questions multiple times a day. Most respondents admitted that the ESM questions rarely disturbed their daily life (median = 4). None of the respondents experienced technical difficulties.
The debriefing questionnaire results show that the ESM questions were not a disturbance on
the participant’s daily life or affected their feelings, thoughts, or behavior.
4. Discussion
The main objective of this study was to explore the fluctuations of mood and self-compassion among patients who just got the diagnosis of cancer. This led to the research questions: (1) What is the longitudinal relationship between self-compassion and mood?; (2) What are the diurnal patterns of mood for cancer patients?; (3) What are the diurnal patterns of self- compassion for cancer patients? This led to applying the experience sampling method to measure mood and self-compassion, four times a day for seven days to showcase the diurnal patterns. This study confirms that mood and self-compassion can vary a lot throughout short periods such as merely hours or days, and with significant differences and patterns between individuals.
(1) What is the longitudinal relationship between self-compassion and mood?
A strong positive correlation was found between self-compassion and mood. Across all 28 timepoints, these two constructs seem to follow each other similarly. Literature (Trompetter, De Kleine & Bohlmeijer, 2017) has shown that self-compassion promotes resilience against psychopathology, and this could explain why mood and self-compassion were so closely related over time. In this study, the high amount of self-compassion - that was apparent with some respondents – may have worked as a buffer, and positively heightened the mood while protecting against psychopathological symptoms. Besides, both the ‘negative’ questions (anxiety and sadness) correlated negatively with the self-compassion, which aligns with the literature where self-compassion was found to negatively correlate with negative affect and positively correlates with positive affect (Barnard & Curry, 2011; Ehret et al., 2014; Hofmann et al., 2012; MacBeth & Gumley, 2012; Muris et al., 2015; Johnson & O'Brien, 2013).
(2) What are the diurnal patterns of mood for cancer patients?
Even though there were different diurnal patterns regarding mood on various days, there were
no significant differences when comparing the timepoints per day with each other. Although
patients experienced usually slightly lower positive mood in the mornings than in the evenings,
it was not a significant difference. The same was found comparing the other timepoints per day
(2, early afternoon; 3, late afternoon) with another. There is not a clear pattern throughout the
day for mood but there is a notable difference between weekdays and the weekend. Literature
shows that weekends were associated with higher mood and well-being while weekdays had
lower mood and well-being (Ryan, Bernstein & Brown, 2010; Stone, Schneider & Harther,
2012). This partially explains the results in this study as indeed mood is almost at its highest on
Sunday but there is also a more positive mood on Tuesday. Mood was the most positive on Friday when the weekend nears and continues this throughout the weekend with a decrease on Saturday morning. The final timepoint of the week (Sunday evening, 18:10 – 21:00) showed a sharp decrease in self-reported mood. This aligns with the literature that weekdays are associated with lower positive mood while the weekends are associated with a more positive mood in the way that the prospect of the (work) week is nearing (during the final timepoint on Sunday) and that the weekend is ending.
(3) What are the diurnal patterns of self-compassion for cancer patients?
This study shows that although mornings were associated with lower amounts of self- compassion and evenings with higher amount of self-compassion, no significant difference was found between these two timepoints of the day. Further analysis of the other timepoints per day for self-compassion showed a similar pattern, although there were some fluctuations across the same day, it was not significant. Self-compassion seems very stable throughout the day and week.
Another notable point is about the type of cancer of the participants. Most of the participants in this study had breast cancer. Breast cancer is a type of cancer that these days has a relatively good outcome with an 88 percent mortality rate over 5 years. Since the outcome is decent, this could influence the constructs of self-compassion and mood compared to a more aggressive type of cancer where the outcome is more severe. Zhu et al. (2020) found that the perceived consequences of the type of cancer (severe or less severe) played a mediating role between self- compassion and depression, anxiety and fatigue over time. The outcome from the Zhu et al.
article aligns with the outcome of this study since most of the participants have a decent outcome for their type of cancer (breast cancer).
4.1. Recommendations for further research
Within this study, the fluctuations were shown by asking about self-compassion and mood. The
fluctuations can be explained by factors such as time of the day or day of the week. However,
specific events could be influencing mood or the amount of self-compassion. Asking about
events preceding the distribution of an ESM message or within the ESM questionnaire was not
done in this study, and limited additional explanations regarding the self-compassion, and mood
fluctuations. Experience sampling method studies sometimes ask about specific events that
have occurred for the participant (Shiffman, Stone & Hufford, 2008). This could range from
asking if the participant had a stressful event in the past 2 hours or another example is asking
whether they had cravings for alcohol. For the specific targeted group of patients who recently got diagnosed with cancer, asking for example whether they had chemotherapy the past day or past hour could help explain outliers within the fluctuations. Mainly because chemotherapy can have a significant short-term effect on someone’s physical and mental wellbeing (Partridge, Burstein & Winer, 2001). It could also provide context on why the self-reported mood is higher.
Clark & Watson (1988) found that social, and physical activity events could increase a person’s self-reported mood. Therefore, it is recommended that further research delves deeper into this topic and combines the experience sampling method with questions about recent events (such as chemotherapy, or more ‘pleasant events) to provide context for the fluctuations.
In this study, patients were offered micro-incentives to increase adherence (Musthag et al., 2011; Singer & Ye, 2013). However, Benabou & Tirole (2003) showed that rewards can also be counterproductive as they undermine intrinsic motivation. The patients were informed that their participation would help ‘future’ cancer patients as the results are used for further development. This was positively received by the participants and this intrinsic motivation played a role in their participation. However, incentives can help by increasing the response rate (Singer & Ye, 2013). Therefore, we recommend that further research should take into account whether micro-incentives undermine intrinsic motivation for participating, while still acknowledging that it is helpful to increase response rates.
4.2. Strengths
The strength of this study is found in the usage of the experience sampling method and linear
mixed methods for data analysis. ESM is very useful and powerful since it can capture mood
and self-compassion of participants in their natural setting. This reduces various types of bias
which makes the data more accurate. This is especially relevant for this study since the
participants are cancer patients who might be in the middle of treatment, and chemotherapy is
known to cause memory fogs (KWF, 2018; NHS, 2020; Partridge, Burstein & Winer, 2001)
therefore, increasing the risk of recall bias. The experience sampling method provides a way to
examine consistency and variability throughout the situations of daily life (Runyan & Steinke,
2015) since it assesses multiple times each day. Compared to traditional survey research the
ESM prevails because of a decreased risk of bias and being able to answer questions in a
naturalistic setting such as at home (Runyan et al., 2019). It also accounts for the way that mood
and self-compassion can fluctuate over time since the assessment is done multiple times a day,
giving a more comprehensive, and accurate depiction of a participant's state.
Another strength of the current study is the debriefing questionnaire that was sent to the participants, asking whether the ESM questions influenced their behavior, feelings, and thoughts and whether they experienced technical difficulties. All of these questions were asked to see whether their ‘true daily life’ was influenced by the ESM questions and if they started behaving, thinking, or feeling differently. Although no participant experienced a strong influence from the ESM questions on their daily life, most of them wrote down explicitly that the ESM questions caused them to become more conscious about their emotions. The repeated effect of asking participants various times over a day caused the participants to become more mindful in a sense, therefore, acknowledging how they were feeling instead of just continuing with their day. This activated mindfulness is important for promoting self-compassion, as it is one of the three elements of self-compassion (Neff, 2003a, 2003b, 2007).
4.3. limitations
A notable limitation of this study was the small sample size of six respondents. This was lower than the expected 20 participants, causing skewness in the results. Although this study only had six participants, it brought 144 data points for a week. Another point that continues on this topic is that the exclusion criteria concerning missing values are strict, excluding everyone who did not fill in more than 50 percent of the questionnaires. This caused some participants to not be included but on the other hand, the ones that did fill in more than 50 percent of the questionnaires already made up for most of the total responses.
Even though the final sample that was used is small, only females were participating. This was not solely because of the sample size and the exclusion criteria. From the total number of participants who registered for the research, all of them were female. Some research suggests that females are more likely to participate in health research (Hawkins et al., 2013), and that could be the reason. However, if we look further at different factors, we see that most of the participants also had breast cancer. Of course, breast cancer is less likely to occur among men but it could have implications that more women go to the hospital to get checked up, and get diagnosed, which could lead to an overrepresentation among diagnosing and therefore increasing the chances of being included in this study. The question naturally arises whether gender could have played a significant role for the reported amount of self-compassion.
According to literature women are generally considered to be more empathic than males (Zahn-
Waxler, Cole & Barrett, 1991; Eisenberg & Lennon, 1983), therefore it is to be expected that
women would be more self-compassionate compared to men. However, women tend to have a
more ruminative coping style than males and are more self-critical (Nolen-Hoeksema, Larson
& Grayson, 1999; Leadbeater, Kuperminc, Blatt & Hertzog, 1999). This contradiction might even out the possibility that gender might play a significant role in levels of self-compassion 5. Conclusion
Although this study was limited in its sample size, the usage of the experience sampling method slightly made up for it by bringing many datapoints per respondent compared to cross-sectional research. The experience sampling method was the strength of the study, by allowing to depict the diurnal patterns, and giving insight into how this changes for patients with cancer.
The diagnosis of cancer brings forth a lot of psychological difficulties. However, these
perceived difficulties can change within and between days. This study researched diurnal
patterns of self-compassion and mood for patients of cancer who recently got diagnosed, and
found that there is variance within and between days for the constructs of mood and self-
compassion. It also shows that self-compassion correlates strongly with both positive mood,
and negatively with negative mood over time. This provides additional evidence that self-
compassion could act as a buffer against psychological symptoms such as anxiety and
depression. This highlights the importance of self-compassion for cancer patients to protect
them against the perceived psychological difficulties they endure.
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Appendix 1: Informed Consent (Qualtrics)
Appendix 2: Information letter
Wij vragen u vriendelijk om mee te doen aan een wetenschappelijk onderzoek van de Universiteit Twente, getiteld: “Zelfcompassie na de diagnose kanker: evaluatie van een smartphone app.” U beslist zelf of u wilt meedoen. Voordat u de beslissing neemt, is het belangrijk om meer te weten over het onderzoek. Lees deze informatiebrief rustig door. Bespreek het met uw partner, vrienden of familie. Hebt u na het lezen van de informatie nog vragen? Dan kunt u terecht bij de onderzoeker, die onderaan deze brief vermeld is.
Uw arts of verpleegkundige heeft u gevraagd of u interesse heeft om deel te nemen aan dit onderzoek. U heeft schriftelijk en online informatie over het onderzoek. Daarna heeft u een aanmeldformulier op onze website ingevuld. Dat is hoe wij aan uw gegevens komen.
1. Wat is het doel van het onderzoek?
De diagnose kanker heeft bijna altijd een enorme impact op het leven van mensen. Om mensen in deze moeilijke tijd een steuntje in de rug te geven, hebben wij samen met patiënten en
verpleegkundigen een hulpmiddel ontwikkeld dat kan helpen de veerkracht te vergroten. Het hulpmiddel bestaat uit een zelfcompassie app voor op de smartphone. Uit onderzoek is bekend dat zelfcompassie trainingen helpen om het welzijn te verhogen en stress te verminderen bij mensen met lichamelijke aandoeningen zoals kanker. De zelfcompassie app is een laagdrempelige versie van deze trainingen, maar dan aangepast op de behoeften van patiënten en de mogelijkheden van een smartphone. Het doel van deze studie is om erachter te komen hoe de app bevalt, welke onderdelen wel en niet aanspreken, en wat de positieve effecten zijn. Deze informatie is nodig om de app geschikt te maken om aan zoveel mogelijk patiënten aan te bieden.
2. Hoe wordt het onderzoek uitgevoerd?
Uw arts of verpleegkundige vraagt u mee te doen aan het onderzoek en verwijst u naar de website voor meer informatie. Wanneer u zich aanmeldt en meedoet aan het onderzoek, wordt u gevraagd om eerst een aantal vragenlijsten in te vullen. Wanneer u deze heeft ingevuld, krijgt u een
toegangscode voor de app. De app mag u dan op uw eigen manier gebruiken. Vervolgens vult u na 8 weken en na 6 maanden nogmaals de vragenlijsten in. De vragenlijsten kosten ongeveer 30 minuten per keer om in te vullen.
In de derde week krijgt u via WhatsApp (of SMS of e-mail) 4x per dag een paar vragen die een halve minuut per keer kosten om in te vullen. Deze vragen zijn belangrijk om te weten hoe het gaat terwijl u de app gebruikt, in plaats van alleen achteraf. Daarnaast zoeken we een aantal vrijwilligers die een interview (per telefoon of videobellen) willen houden van 60 minuten over hun ervaringen met de app.
Deelnemers krijgen als eerste exclusief toegang tot een nieuwe zelfcompassie app voor mensen met kanker. De app bestaat uit verschillende onderdelen die gemaakt zijn om 6 weken lang te gebruiken.
Daarnaast zijn er onderdelen in de app die altijd gebruikt kunnen worden. Het is niet mogelijk om van de app gebruik te maken zonder de vragenlijsten in te vullen, omdat het belangrijk is dat de app goed geëvalueerd wordt voordat het breder beschikbaar wordt.
Als u hier apart toestemming voor geeft, dan brengen wij uw verpleegkundige op de hoogte van dat u aan het onderzoek meedoet. Uw verpleegkundige is niet inhoudelijk betrokken bij het gebruik van de app, maar blijft het aanspreekpunt voor als u moeilijke ervaringen heeft. Indien u aangeeft dat de app u niet voldoende ondersteuning geeft, dan gaat uw verpleegkundige met u in gesprek over verdere ondersteuning.
3. Wat wordt er van u verwacht?
Er wordt een actief gebruik van de app verwacht, waarbij u zoveel mogelijk onderdelen van de app uitprobeert. Wij schatten dat dit 2 uur per week kost voor 6 weken. Dit is belangrijk om de app goed te kunnen evalueren. U kunt de app op uw eigen manier en in uw eigen tijd gebruiken. Dat betekent dat u oefeningen of informatie kunt herhalen die bij u passen, en iets wat niet aanspreekt kunt overslaan.
U wordt gevraagd om vooraf, na 8 weken en na 6 maanden een aantal vragenlijsten in te vullen via internet. De vragenlijsten gaan over zelfcompassie en over hoe het met u gaat. Ook zijn er enkele vragen over uw achtergrond. Dit kost 3x 30 minuten.
Tijdens de 3e week van de app krijgt u 4x per dag een bericht met een vraag over hoe u zich op dat moment voelt. Dit kost een halve minuut per keer en duurt 1 week.
Bij het invullen van de vragenlijst wordt u gevraagd of u mee wilt doen aan een interview. Dit is optioneel. Als u hier ja op antwoord, dan wordt u benaderd om een interview te plannen van 60 minuten, om uw ervaringen met de app te delen. Dit mogen positieve en negatieve ervaringen zijn. De vragen zullen gaan over welke onderdelen van de app wel of niet bevielen en wat u eraan heeft gehad. Zo kunnen we de app optimaal evalueren en verbeteren voor toekomstige patiënten.
Van de interviews worden met uw toestemming audio-opnames gemaakt, zodat er geen informatie verloren gaat. Ook wordt u gevraagd toestemming te geven voor het gebruik van uw gegevens voor de doeleinden van dit onderzoek (zie punt 5).
4. Wat gebeurt er als u niet wenst deel te nemen aan dit onderzoek?
U beslist zelf of u meedoet aan het onderzoek. Deelname is vrijwillig. Als u besluit niet mee te doen, hoeft u verder niets te doen. U hoeft niets te tekenen. U hoeft ook niet te zeggen waarom u niet wilt meedoen. U krijgt gewoon de behandeling die u anders ook zou krijgen.
Als u wel meedoet, kunt u zich altijd bedenken en toch stoppen. Ook tijdens het onderzoek. U hoeft geen reden te geven waarom u wilt stoppen.
5. Wat gebeurt er met uw gegevens?
Voor dit onderzoek worden uw persoonsgegevens gebruikt en bewaard. Het gaat om gegevens zoals uw naam, leeftijd en om informatie over uw diagnose. Ook gebruiken we gegevens van de
vragenlijsten en uw gebruik van de app. ‘Gebruik van de app’ betekent: hoe vaak bepaalde onderdelen van de app worden gebruikt en voor hoe lang. We gebruiken die informatie niet per persoon, maar als gemiddelde. Uw antwoorden op vragen in de app worden niet opgeslagen en kunnen niet door onderzoekers worden bekeken. Het verzamelen, gebruiken en bewaren van uw gegevens is nodig om de vragen die in dit onderzoek worden gesteld te kunnen beantwoorden en de resultaten te kunnen publiceren. Wij vragen voor het gebruik van uw gegevens uw toestemming.
Vertrouwelijkheid van uw gegevens
Om uw privacy te beschermen krijgen uw gegevens een code. Uw naam en andere gegevens die u direct kunnen identificeren worden daarbij weggelaten. Alleen met de sleutel van de code zijn gegevens tot u te herleiden. De sleutel van de code blijft veilig opgeborgen in de lokale
onderzoeksinstelling. Ook in rapporten en publicaties over het onderzoek zijn de gegevens niet tot u te herleiden.
Toegang tot uw gegevens voor controle
Sommige personen kunnen op de Universiteit Twente toegang krijgen tot al uw gegevens. Ook tot de gegevens zonder code. Dit is nodig om te kunnen controleren of het onderzoek goed en betrouwbaar is uitgevoerd. Personen die ter controle inzage krijgen in uw gegevens zijn bevoegde medewerkers van dit onderzoek, de Inspectie voor de Gezondheidszorg en controleurs van de Raad van Bestuur van de instelling waar het onderzoek wordt uitgevoerd. Zij houden uw gegevens geheim. Wij vragen u voor deze inzage toestemming te geven.
Bewaartermijn gegevens
Uw gegevens moeten 10 jaar worden bewaard op de Universiteit Twente. Hierna worden de gegevens vernietigd.
Intrekken toestemming
U kunt uw toestemming voor gebruik van uw persoonsgegevens altijd weer intrekken. Dit geldt voor dit onderzoek. De onderzoeksgegevens die zijn verzameld tot het moment dat u uw toestemming intrekt worden nog wel gebruikt in het onderzoek.
Meer informatie over uw rechten bij verwerking van gegevens
Voor algemene informatie over uw rechten bij verwerking van uw persoonsgegevens kunt u de website van de Autoriteit Persoonsgegevens raadplegen.
Bij vragen over uw rechten kunt u contact opnemen met de verantwoordelijke voor de verwerking van uw persoonsgegevens. Voor dit onderzoek is dat de Functionaris voor de Gegevensbescherming van de Universiteit Twente: dr. Lyan Kamphuis – Blikman.
Zie bijlage A voor contactgegevens en website.
Bij vragen of klachten over de verwerking van uw persoonsgegevens raden we u aan eerst contact op te nemen met Universiteit Twente. U kunt ook contact opnemen met de Functionaris voor de Gegevensbescherming van uw ziekenhuis (zie bijlage A) of de Autoriteit Persoonsgegevens.
6. Zijn er extra kosten of krijgt u een vergoeding wanneer u besluit aan dit onderzoek mee te doen?
Indien u reiskosten moet maken, worden deze vergoed. U krijgt geen vergoeding voor algemene deelname aan het onderzoek. Wel krijgt u een vergoeding (in de vorm van een VVV-bon) voor het beantwoorden van de vragen via WhatsApp (of SMS, e-mail) in week 3. U krijgt 40 cent per keer dat u de vragen volledig invult (dit kost een halve minuut per keer). Dit wordt achteraf uitbetaald als u tenminste 60% van de vragen heeft ingevuld. In totaal kunt u 11,20 euro verdienen door in ongeveer 17 minuten deze vragen te beantwoorden. Deelname aan dit onderzoek staat volledig los van uw ziekenhuisbehandeling en de kosten die u daarvoor maakt.
7. Door wie is dit onderzoek goedgekeurd?
De Raad van Bestuur van uw ziekenhuis heeft goedkeuring gegeven om dit onderzoek uit te voeren.
Het onderzoek wordt door KWF gesponsord en een beoordelingscommissie van het KWF heeft het doel en de opzet van het onderzoek positief beoordeeld.
8. Wilt u verder nog iets weten?
Voor het stellen van vragen en het inwinnen van nadere informatie voor, tijdens en na het onderzoek kunt u contact opnemen met Judith Austin (onderzoeker op dit project) op het telefoonnummer 0534897024 of via het e-mailadres zelfcompassiebijkanker@utwente.nl. Voor het nalezen van informatie over het onderzoek kunt u kijken op de website www.compas-y.nl.
Indien u na zorgvuldige overweging besluit deel te nemen aan dit wetenschappelijk onderzoek, dan vragen we u om samen met de onderzoeker het toestemmingsformulier te ondertekenen en van een datum te voorzien.
Met vriendelijke groet, mede namens het onderzoeksteam Judith Austin
Bijlage: contactgegevens voor het UMCG
Voor vragen over het onderzoek kunt u contact opnemen met:
Mevr. Judith Austin (onderzoeker op dit project, Universiteit Twente) Telefoonnummer: 053 489 1519
E-mail adres: zelfcompassiebijkanker@utwente.nl Website onderzoek: www.compas-y.nl
De deelnemend arts van het UMCG is:
Dr. Janine Nuver (internist-oncoloog), 050 361 1543
Functionaris voor de Gegevensbescherming van het UMCG Mr.
Piet Dinjens en Mevr. Boudien Sieperda.
E-mail adres: privacy@umcg.nl
Voor meer informatie over uw rechten:
Functionaris voor de Gegevensbescherming van de Universiteit Twente dr. Lyan Kamphuis-Blikman Telefoonnummer: 053- 489 3399
E-mail l.j.m.blikman@utwente.nl
Bijlage B: contactgegevens voor het MST
Voor vragen over het onderzoek kunt u contact opnemen met:
Mevr. Judith Austin (onderzoeker op dit project, Universiteit Twente) Telefoonnummer: 053 489 1519
E-mail adres: zelfcompassiebijkanker@utwente.nl Website onderzoek: www.compas-y.nl
De deelnemend arts van het MST [wijzigen per lokaal ziekenhuis] is:
Dr. Machteld Wymenga (internist-oncoloog), (053) 487 24 40.
Functionaris voor de Gegevensbescherming van het MST:
Mevr. mr. P.J.F. van Paridon-Boerrigter Telefoonnummer: (053) 487 20 00 E-mail adres: privacy@mst.nl
Voor meer informatie over uw rechten:
Functionaris voor de Gegevensbescherming van de Universiteit Twente dr. Lyan Kamphuis-Blikman Telefoonnummer: 053- 489 3399
E-mail l.j.m.blikman@utwente.nl
