Abstract
Mental health problems were found to be more common than physical health problems in cancer caregivers in palliative care units. This is a quasi-experimental study planned to determine the effect of the meditation based mandala programme on distress, anxiety and depression in caregivers of cancer patients in a palliative care unit. Planned as a single-group pre-test/post-test design, with a total of 11 caregivers. Data were collected with the Caregiver Diagnosis Form, Distress Thermometer, Beck Depression Inventory, and Beck Anxiety Inventory. Caregivers participated in the Meditation Based Mandala Programme once a week, which lasted 2 hours for 5 weeks. The distress, depression and anxiety levels of the patients were measured before the programme started and at the end of the programme. Meditation based mandala programme is effective in reducing the distress, depression and anxiety levels of caregivers of cancer patients in the palliative care unit.
Introductıon
As life expectancy increases, methods used for cancer treatment progress and the prognosis of cancer changes, patients now live longer and require palliative care as the disease progresses and the terminal period becomes longer (Antony et al., 2018; Wang et al., 2018). Palliative care is an approach that aims to prevent suffering and improve quality of life for the patients and their families experiencing problems arising from life-threatening disease through early diagnosis and evaluation of pain and other problems and meeting their physical, psychosocial and spiritual needs (World Health Organization [WHO], 2022). In palliative care, which is a patient and family-centred form of care, the care needs of patients are met by informal caregivers who spend the longest time with them. Shouldering the responsibility of care for the patient receiving palliative care, caregivers strive to maintain 24-hour uninterrupted care, helping their patients to meet their care needs such as personal care, symptom control, transportation, emotional support, and drug administration (Nipp et al., 2016; Limonera et al., 2020).
Usually caught unprepared for this task (Guclu et al., 2018; Duran et al., 2019), caregivers neglect their own health and face many problems in the emotional, physical and economic aspects of life (Gultas & Yılmaz, 2017; Antony et al., 2018; Chua et al., 2020; Ramasamy et al., 2021).
Mental health problems were found to be more common than physical health problems in caregivers who neglect their own health (Geng et al., 2018; Govina et al., 2019). Caregivers most frequently experience psychological problems such as distress (Decadt et al., 2021; Aliaga et al., 2021; Rubio et al., 2018; Kirk et al., 2021), anxiety, and depression (Trevino et al., 2018; Oechsle et al., 2019; Govina et al., 2019; Areira et al., 2018).
Distress is an important component of well-being, and it is recommended to be checked as the sixth vital sign in cancer patients (Riba et al., 2019), whereas the distress experienced by caregivers of cancer patients can often be ignored. Early recognition of distress is very important because high levels of distress can trigger psychological problems such as anxiety and depression (Kirk et al., 2021).
In palliative care, it is very important to strengthen the family in order to provide support, reduce caregiver stress and ensure patient comfort (Can, 2020).
It is recommended to use art therapy to improve the psychological problems experienced by caregivers of cancer patients, also described as “invisible patients” in the literature (Park & Song, 2020). There is a globally recognized close relationship between art, healing and well-being, and art therapy has been used as an important tool in the diagnosis and treatment of psychological disorders since the middle of the 20th century (Khademi et al., 2021).
Mandala drawing and painting is one of the innovative art therapy approaches. Carl Jung, a pioneer therapist who lead major psychological movements, used the mandala technique as a form of therapy in the early 1900s, making the processes of getting to the source of the problem and healing a colourful activity with this method (Jung & Hull, 1973). “Manda” means energy and essence and “La” means vessel, reflecting the individual’s core energy. Mandala in the company of a trained therapist is a therapy method in which individuals express their unmet emotional needs non-verbally. The image created by Mandala is a reflection of the individual’s current mood and self (Kaimal et al., 2019).
Previous studies have concluded that the mandala programme is more often used to improve the psychological distress experienced by cancer patients (Gurcan & Atay Turan, 2021; Cohen et al., 2019; Abuhoff et al., 2009).
The core feature of palliative care is to diagnose and alleviate the psychological problems experienced by cancer patients as well as those who care for cancer patients (Ullrich et al., 2017).
There have been no studies in Turkey or other countries to evaluate the effect of the meditation based mandala programme on the improvement of the psychological problems experienced by caregivers of cancer patients in palliative care units. This study aims to determine the effect of the meditation based mandala programme on the distress, anxiety and depression experienced by the caregivers of cancer patients in a palliative care unit.
Method
Study design
This is a quasi-experimental research planned in a single-group pre-test/post-test design to determine the effect of the meditation based mandala programme on the distress, anxiety and depression experienced by the caregivers of cancer patients in a palliative care unit. The independent variable in this study was mandala application and the dependent variables were distress, anxiety and depression levels.
Research hypotheses
The distress scores of caregivers in the palliative care unit will decrease compared to the pre-programme.
The anxiety scores of caregivers in the palliative care unit will decrease compared to the pre-programme.
The depression scores of caregivers in the palliative care unit will decrease compared to the pre-programme.
Participants
Those who cared for terminal cancer patients, were willing to participate in the study, aged 18 years or older, had no psychiatric disorders or were not taking drugs such as antidepressants, could use a pencil and spent the longest time with the patient were included in the study. Caregivers unable to attend the programme regularly were removed from the study.
Considering the mean score reported in the study by Yakar et al. (2021), Cohen’s d effect size was calculated as 0.68. It was stated that a total of 15 patients should be reached when the power is 0.80 and the alpha is 0.05. There were 20 beds in total in the palliative service and the study started with a total of 16 caregivers. However, two of the caregivers could not attend the programme regularly, one left the study voluntarily and two could not continue the study because their patients died. The study was completed with 11 caregivers.
Programme Content
Caregivers participated in the Mandala Programme once a week, lasting 2 hours for 5 weeks. The content of the programme was created by Mandala Meditation Yoga instructor (B. Yılmaz) for the caregivers in the palliative care unit, mainly as a therapy (Figure 1). The instructor is certified in Advayta Yoga, Yin Yoga, Reiki and Mindfulness Meditation. Mandala programme content.
Compasses, rulers (30 cm), pencils, dry crayons, A3 drawing books and kneadable erasers were used in the mandala drawing. Different meditation techniques were used with mandala gradually each week. The programme took place in the meeting room of the clinic, which can also be used by the relatives of the patients. Care was taken to ensure that the environment was quiet and free from distractions, such as mobile phones. The training, which took place 1 day a week for 5 weeks, was held at the delivery time of the shift. Thus, nurses working both day and night shift were responsible for the patients.
Mindfulnes-based stress reduction techniques were included in the first, third and fifth weeks of the program (Kabat-Zinn & Hanh, 1990). Information about the meditation techniques in the program flow is given below.
Meditation; Breath awareness, root-power breathing work; The Root Breath technique is an ancient breathing technique used in extremely simple Yoga and Reiki practices. In this way, breathing is provided in the abdominal region called coor. This study is very easy in terms of content and is a relaxing breathing exercise with positive effects that is aimed at bringing the person into routine breathing habits (Malone, 2012).
Meditation; Breath awareness and chakra balancing work: This exercise involves focusing on the moment, keeping one’s attention on breathing. The person sits upright in a comfortable position with eyes closed. Participants are instructed to focus on the diaphragm movements while breathing slowly, deeply and comfortably. If attention shifts to undesirable thoughts, ideas, or images, the individual is taught to accept them without judging them and to shift attention back to diaphragmatic breathing (Kabat-Zinn & Hanh, 1990). In the first week, the balance work of the seven basic chakras was performed, accompanied by the breathing technique. In this study, seven basic chakra applications were made. Chakras are damaged after trauma, life struggle and all kinds of negativity and stress. The goal here was to contribute to the attainment of balance (Malone, 2012).
The Effect of the Meditation Based Mandala Programme on Distress, Anxiety and Depression Scores.
aWilcoxon signed rank test.
bEffect size.
cDistress thermometer
dBeck Depression Inventory
eBeck Anxiety Inventory.
Meditation; Expression with HA breathing; In this breathing work, the breath taken from the nose is released as if it is sprayed from the mouth. In this way, the breath accumulated in the chest is thrown out, and with the help of the opened area, it helps to breathe more easily and diaphragm breathing (Vitale & Len, 2016).
Gassho meditation; It is also known as soul calming meditation. It has a concentration-enhancing and calming effect (Vitale, 2015).
Data Collection
Data were collected with Caregiver Diagnosis Form, Distress Thermometer, Beck Depression Inventory, and Beck Anxiety Inventory, between February 6 and March 5, 2020 in the palliative care unit of a training and research hospital in Istanbul. The distress, anxiety and depression levels of the patients were measured before the programme started and at the end of the programme.
Data Collection Tools
Caregiver Diagnosis Form; It consists of nine questions on the age, gender, education level, marital status, profession, degree of closeness to the patient, presence of other caregivers, duration of care and daily caregiving duration of caregivers.
Distress Thermometer; It was developed by Roth et al., in 1998 to measure psychosocial distress in cancer patients (Roth et al., 1998). The distress thermometer is used to diagnose the distress experienced by cancer patients. The scale is a 3-level thermometer scored between 0–10 and asks patients to indicate how much pressure they have felt in the last week. A marked score of 4 or more indicates that the patient is experiencing clinically significant distress. The validity and reliability study of Distress Thermometer in our country was performed by Özalp et al., who found the cut-off point of the scale as 4 for our country (Ozalp et al., 2007).
In this study, the Cronbach’s alpha value of the scale was found to be 0.69.
Beck Anxiety Scale; It was developed by Beck et al. (1988) to determine the frequency of anxiety symptoms experienced by individuals. In the scale consisting of 21 items in total, each item is scored between 0 and 3, high scores indicating a high level of anxiety. 0–17 points from the scale indicate low, 18–24 points indicate medium and 25 points and above indicate high anxiety level (Beck et al., 1988). Turkish validity and reliability study was performed by Ulusoy (Ulusoy, 1993). In this study, the Cronbach alpha value of the scale was found to be 0.85.
Beck Depression Scale; Also developed by Beck et al. (1961), the self-report inventory aims to determine the depressive levels of individuals and includes 21 items. Each item is scored between 0 and 3 and the scores that can be obtained from the inventory range between 0 and 63. 0–9 points indicate normal, 10–18 points indicate mild, 19–29 points indicate moderate, and 30–63 points indicate severe depressive symptoms (Beck et al., 1961). Turkish validity and reliability study was done by Hisli. High scores indicate increased depressive symptoms (Hisli, 1989). In this study, the Cronbach’s alpha value of the scale was found to be 0.82.
Evaluation of Data
Descriptive characteristics were presented as percentiles and means. Wilcoxon signed rank test was used to compare the distress and anxiety scores before and after the programme. p values <0.05 were considered as statistically significant.
Results
Descriptive Characteristics of Caregivers
The mean age of the caregivers was 48.72 ± 11.42 years, 90.9% were women, 36.4% were primary school graduates, 72.7% were married, 63.6% were housewives, and 54.5% were the patient’s spouse. All caregivers stated that they had no primary caregivers other than themselves. 45.5% had a caregiving period of 5 years or more, and 81.8% gave care for 8 hours or more per day.
The Effect of the Meditation Based Mandala Programme on Distress, Anxiety and Depression Scores
The distress score of the caregivers before starting the programme was 5.83 ± 3.06 which was 3.25 ± 2.89 at the end of the programme. Post-programme distress scores decreased significantly compared to pre-programme (Z: −2.203; p: 0.028). Before starting the programme, caregivers’ depression score was 16.33 ± 10.19 compared to 7.83 ± 7.03 at the end of the programme. Depression scores decreased significantly after the programme compared to the pre-programme (Z: −2.491; p: 0.013). Anxiety score of caregivers before the programme was 13.41 ± 9.22, which was found to be 8.00 ± 7.10 at the end of the programme. Anxiety scores decreased significantly after the programme compared to before the programme (Z: 2.005; p: 0.045) (Table 1). According to Cohen (1988), when the effect size was calculated, it was found that the meditation based mandala program had a large effect on distress and depression, and a moderate effect on anxiety (Pallant, 2007). H1, H2 and H3 hypotheses were accepted.
Discussion
In this study, caregivers of cancer patients in the palliative care unit were found to experience clinically significant distress, mild depression, and low anxiety before the programme. The meditation based mandala programme proved to be effective in reducing the distress, anxiety and depression mean scores of caregivers.
Increased responsibilities of caregivers cause them to experience distress by leading to psychological pressure, possibly affecting their mental health (Limonero et al., 2020). Caregivers of cancer patients were reported to experience more distress than patients, and that distress was more common in caregivers of advanced cancer patients (Trevino et al., 2018; Gotze et al., 2014; Long et al., 2020). As increased routines at home overwhelm the caregivers in their daily life, their outside activities gradually become less frequent and social isolation begins (Gotze et al., 2014). The increase in the care needs of the patient and the insufficient resources of the caregivers to meet this need intensify their stress. Stress has negative effects on the psychological well-being of the caregiver; it can trigger psychological problems such as emotional distress, anxiety and depression (Northouse et al., 2012). Even the presence of cancer alone is an important reason for developing anxiety and depression (Geng et al., 2018).
In the literature, 42.3% of caregivers reported depression and 46.6% experienced anxiety while up to a quarter of caregivers of advanced cancer patients were reported to experience major depressive symptoms, and about a fifth of caregivers experienced high anxiety levels (Geng et al., 2018; Trevino et al., 2018).
The scope of psychosocial care has expanded from patients to include their caregivers as well (Karabekiroglu et al., 2018). Trevino et al. described a need for studies on the effectiveness of psychosocial interventions in reducing the psychological distress experienced by caregivers of cancer patients (Trevino et al., 2018). It has also been argued that innovative psychosocial approaches are needed to reach vulnerable caregivers. This created important opportunities for complementary health approaches and has led to the emergence of methods such as art therapy (Store & Jakobsson, 2022).
There are scarcely any studies in which art-based approaches are applied only to caregivers. Although international guidelines (WHO, Palliative Care, 2022) have emphasized that palliative care should be family-centred, there seems to exist only a limited number of studies that are caregiver-oriented. Support for caregivers is one of the issues that the literature fails to address (Areira et al., 2018).
On the other hand, it is actually difficult to reach caregivers as they do not want the focus to be on them even if they admit that they need it. Their continuous caregiver role prevents them from taking part in interventions that will reduce their stress (Walsh & Weiss, 2003). In this study, it was found that almost half of the caregivers had caregiver experience of five years or more, and most of the caregivers reported that they provided care for eight hours or more per day.
In this study, mandala drawing and painting, which is an art-based innovative approach, was used in conjunction with various meditations and yoga poses as a therapy to reduce the distress, anxiety and depression levels experienced by caregivers. With the mandala program, body awareness was attained and meditation was achieved with repetitive patterns and symmetrical forms, thus improving the attention and awareness of the caregiver while they were painting, thereby helping them to focus on the moment. Before each programme, breath scanning was performed to activate senses and emotions with body awareness. This body awareness was accompanied by yoga and different meditation techniques as specified in the programme flow (Figure 1). The feelings and attitudes of the participant were observed by the trainer during the meditations. It was thought that enabling caregivers to focus on themselves and live the moment with the mandala programme contributed to the reducing distress, anxiety and depression levels.
Of the limited number of studies evaluating the effectiveness of art therapy on caregivers, the study by Kaimal et al. (2019) has reported that painting was effective in reducing the stress of caregivers in radiation oncology. In another study, caregivers’ burden of care decreased as a result of group art therapy applied to caregivers of patients with brain injury (Kim et al., 2021).
The literature also hypothesizes, similar to our study results, that body awareness is the mechanism behind the effect of mandala painting on anxiety reduction. Repetitive patterns, symmetrical forms and painting enhance meditation (Store & Jakobsson, 2022), the use of breathing exercises and yoga positions increase attention and awareness and staying away from worries for a while was effective in reducing stress (Mantzios & Giannou, 2018; Kaimal et al., 2019; Park & Song, 2020).
Conclusion
The meditation based mandala programme is effective in reducing the levels of distress, anxiety and depression experienced by caregivers of cancer patients in the palliative care unit.
Suggestions
The distress, anxiety and depression levels of caregivers who care for cancer patients in the palliative care unit should be evaluated at regular intervals.
Nurses can have caregivers draw and paint a mandala with the method/instruction used in the research, or counsel caregivers to draw and paint a mandala with appropriate directions to alleviate the psychological distress caregivers experience.
Limitation
This study was conducted only on the caregivers of patients diagnosed with cancer, not all chronic diseases, in the palliative care unit. It is a quasi-experimental research created with a pre-test/post-test design. We wanted to measure the level of distress, anxiety and depression of caregivers at regular intervals, but the onset of the coronavirus epidemic across the country prevented this from happening.
Footnotes
Acknowledgments
The authors gratefully acknowledge the caregivers who participated in this study are appreciated.
Author Contribution
All authors contributed to the study conception and design. HKY, BY, EC, O Ozkol, FG, O Oruc, HS. The data were collected by EC, O Ozkol, FG, BY, HKY and O Oruc analyzed the data. The results were confirmed by all co-authors. The manuscript was written by HKY, BY, O Oruc. All authors reviewed the manuscript. HKY prepared and drafted the first manuscript.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
