Artículos

Development of a cognitive-existential intervention to decrease compassion fatigue in formal caregivers

Desarrollo de una intervención cognitiva-existencial para disminuir la fatiga por compasión en cuidadores formales

Introduction

Palliative care is a multidisciplinary approach that aims to improve “the quality of life of patients and their relatives facing problems associated with life-threatening illness (…) [by] early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual” (World Health Organization, 2002, p. 84). The people who provide this assistance and who are associated with a formal service system, either as volunteers or as paid workers, are known as formal caregivers. They can work independently, in institutions or organizations, and at the patient's home (Caregiver Alliance, 2014). These caregivers should have specialized training and a humanized attitude to support the patients and their relatives. Formal caregivers must deal not only with the physical symptoms of the illnesses but also be able to provide psychological and spiritual support so that patients live with autonomy and dignity until their death (World Health Organization, 2018).

Caring for others could have positive consequences for caregivers. Compassion satisfaction is the term used to describe the joy that comes from working to help others or the pleasure that comes from working with people who need care (Stamm, 2010). Caregivers with greater satisfaction show larger commitment, effort, positive affection, and dedication; communicate difficult issues better; provide more appropriate information to patients; feel more effective and secure in their interpersonal relationship with the patients; and perceive their work with purpose (Hernández-Vargas, Llorens-Gumbau, & Rodríguez-Sánchez, 2014).

On the other hand, the emotional and psychological burden of caregiving is also associated with negative repercussions on the health of the caregiver and the erosion of their relationship with their patients (Benito, Arranz, & Cancio, 2011). The burden can also result in low productivity, low motivation to care, and problems in the caregiver's interpersonal relationships (Atukunda, Memiah, & Sibongile Shumba, 2013). In turn, this can negatively influence the patient’s adjustment to the changes that occur during the progress of his/her illness (Astudillo & Salinas Martín, 2011).

There is evidence that formal caregivers experience a descent in their quality of life due to the frequent exposure to patient’s health deterioration, their inevitable death, and the grieving process of patients and their families (Failde, Carballo Bouzas, Lameiras Fernández, & Rodríguez Castro, 2013). Other personal circumstances also affect the quality of life of caregivers and could be more prevalent than those work-related (Cohen-Katz et al., 2005). Even though working in palliative care constantly shows formal caregivers their vulnerability as human beings, they may neglect their own care to focus on the needs of others (Figley, 2002).

This deterioration in the quality of life of formal caregivers is known as compassion fatigue. According to Joinson (1992), Doris Chace, a crisis counselor, first used the term compassion fatigue and described it as a form of burnout that specifically affects people in care professions. Compassion fatigue is often referred to in the literature as secondary traumatic stress or vicarious trauma (Stamm, 2010), although there are differences between the concepts (Baird & Kracen, 2006). Burnout is another term that is often used interchangeably with compassion fatigue (Sorenson, Bolick, Wright, & Hamilton, 2016) even though it is a different construct (Alkema, Linton, & Davies, 2008; Slocum-Gori, Hemsworth, Chan, Carson, & Kazanjian, 2011) with different symptomatology (Figley, 2002; Maslach, Schaufeli, & Leiter, 2001). For example, contrary to burnout, compassion fatigue can appear suddenly, it relates to how work affects the person caring, and it can cause indifferent attitudes or excessive involvement with the patients (Anewalt, 2009). Compassion fatigue also reduces the ability and interest to bear the suffering of others, but it is associated with a greater sense of hopelessness, confusion, and isolation than burnout (Figley, 2002). Hence, the term compassion fatigue should be used when discussing the emotional sequel left by caring for patients and their families (Aycock & Boyle, 2009). In this article, compassion fatigue is understood as a type of secondary traumatic stress that appears from the cost of caring for those who suffer (Figley, 2002).

Current research reports some risk factors to develop compassion fatigue and burnout in caregivers. Some examples include: conflicting interactions between family and patients, communication of bad or uncertain news, dealing with death and suffering, involvement with patients and family members, conflictive work environment, management of workload and work stress, inability to process emotions, feelings of guilt and anxiety, feeling overwhelmed by personal concerns, among others (Nolte, Downing, Temane, & Hastings-Tolsma, 2017; Sorenson et al., 2016).

Daily, formal caregivers in palliative care face these factors and other existential issues that urges them to redefine priorities, perceive life with gratitude and appreciation of the resilience of others, and experience personal growth (Beaune, Muskat, & Anthony, 2018). Research shows that organizational virtues such as support, respect, meaning and inspiration, and forgiveness, influence people’s actions, contribute to experience a fuller life, and have a direct effect on job satisfaction and performance levels (Lupano Perugini & Castro Solano, 2018). Satisfaction may also have the potential to decrease compassion fatigue (Kelly, Runge, & Spencer, 2015; Mota Vargas et al., 2016). Unquestionably, handling the contradiction of providing care that is meaningful and exhausting at the same time is difficult (Candrian, 2014).

Thus, different interventions have been developed to care for the caregiver and increase self-care. The literature reports interventions that include meaning-centered techniques to increase professional quality of life (Fillion et al., 2009); training on spiritual care to improve the relationship with the patient (Wasner, Longaker, Fegg, & Borasio, 2005); coaching caregivers in communication skills (Clayton et al., 2013); mindfulness training (Cohen-Katz et al., 2005; Mackenzie, Poulin, & Seidman-Carlson, 2006); learning about death anxiety (Melo & Oliver, 2011); among others. However, it is hard to critically analyze many of these due to the large heterogeneity between studies (Masoudi & Hosseini, 2019), the variety of perspectives used, the lack of a solid theoretical framework that underline and support the intervention activities, the absence of detail in the themes and protocols employed, the absence of studies with control groups, and the varied results on the effectiveness of the interventions (Henry, 2014; Hill, Dempster, Donnelly, & McCorry, 2016; Van Mol, Kompanje, Benoit, Bakker, & Nijkamp, 2015).

Meaning-centered and existential interventions have been shown to be generally useful (Regehr, Glancy, Pitts, & LeBlanc, 2014; Vos, Craig, & Cooper, 2015), especially in patients with cancer and in palliative care (Breitbart et al., 2015; Gagnon, Fillion, Robitaille, & Girard, 2015) and their informal caregivers (Applebaum, Kulikowski, & Breitbart, 2015). However, to date, only one intervention for formal caregivers that used Logotherapy, a type of existential therapy, has been rigorously reported (Fillion, Dupuis, Tremblay, De Grâce, & Breitbart, 2006). Besides, none of the studies have taken place in Latin America nor have they used a cognitive-existential theoretical basis for the development of sessions. In addition, most of the research on interventions do not show their development nor a detailed explanation of the mechanisms or activities used. Consequently, the purpose of this study is to report the design and development of a cognitive-existential group-based psychoeducational intervention (CEGPI) created to promote self-care and satisfaction and to reduce compassion fatigue of formal caregivers of palliative care patients in a Latin American context. This research had the ethical endorsement of the Research Ethics Committee of the University of Deusto (Ref: ETK 3 / 16-17).

Methods

This article is part of a larger mixed-methods study that had three main objectives:

1) To explore the reality of formal caregivers of people in palliative care by analyzing semi-structured interviews about the barriers they encounter daily and the resources they have to deal with them.

2) To design a replicable intervention to decrease compassion fatigue and increase compassion satisfaction of formal caregivers.

3) To test the long-term effectiveness of the developed intervention.

This manuscript answers to the second objective and reports the design development of the mentioned intervention.

The following steps were taken to develop the CEGPI:

1) To create a draft of the intervention, the first phase was based on the “Existential Dialogue Circles” (Luna, 2011), an activity centered on logotherapy and existential analysis. It uses meaningful communication as a prevention strategy against the existential void. 2) Considering the workload of formal caregivers and evidence showing that shorter interventions tend to be more effective (Sheard & Maguire, 1999; van der Klink, Blonk, Schene, & van Dijk, 2001), the first draft of the intervention was designed to be eight sessions long, divided in one-hour weekly meetings (total of eight hours). 3) Two experts in Logotherapy were consulted to review the intervention and suggest changes. Both agreed with all aspects of the intervention, and one recommended adding cognitive strategies to better accomplish the CEGPI’s objectives. 4) Meanwhile, a total of 84 formal caregivers of palliative care patients from three institutions in Ecuador were interviewed to explore their reality as caregivers and the barriers and resources they perceive to perform their work (Hidalgo-Andrade & Martínez-Rodríguez, 2019). Taking into consideration the information from the interviews, some themes of the original draft were adapted, and relaxation techniques and other didactic elements were included in the intervention.5) The final versions of the intervention manual for the facilitator and for the participants were written. The material for participants was a personalized folder with printed material to deepen the content covered in each session, recommended readings, and reflection phrases about health, meaning, and caring. This folder is to be delivered to the participants at the start of each session so they could take notes, write their thoughts and feelings, and do the in-session written exercises. At the end of the eighth session, the participants keep their materials so they can refer back to them. Each session of the CEGPI followed the same structure as outlined in Table 1. There was no homework or extra exercises assigned, except for the second session. The facilitator’s manual and participants' material can be obtained by contacting the main researcher.

Results

Content of the CEGPI

The workplace is a scenario of formal and informal social interaction where individual freedom of choice and action should be respected (Lopera Arbeláez & Echeverri Álvarez, 2019). Accordingly, the content of the CEGPI mainly addresses ways for finding meaning through caring, exploring personal and professional relationships, and applicable ways to practice self-care. It also used personal narratives, as well as many other interventions (Roikjær, Missel, Bergenholtz, Schønau, & Timm, 2019), and addressed the reported risk factors to develop compassion fatigue with actions aimed at modifying them. Also, because existential psychology can be effectively integrated with constructivism (Lincoln & Hoffman, 2019), the CEGPI explores existential issues and introduces cognitive strategies to deal with the demands of being a formal caregiver for people with palliative care needs through Logotherapy and rational emotive therapy techniques.

Rational emotive therapy is a cognitive therapy that uses emotive and behavioral methods to help people identify their irrational beliefs (Ellis & Abrahms, 2005). This perspective assumes that emotional consequences come mainly from ideas, beliefs or interpretations about experiences, and looks at cognition, behavior, and emotion as interrelated and indivisible. These strategies were included in the activities because it has been shown that the most successful interventions incorporate skills to reappraise maladaptive cognitions (Galbraith & Brown, 2011). On the other hand, Logotherapy considers how existence finds meaning in work, promotes freedom and responsibility, and argues that people’s will for meaning prevails even when faced with hard circumstances such as suffering and death (Acevedo, 2014). It also encourages the recognition of each person’s dignity and limits and promotes the use of social skills and human strengths, which have proven to be protective factors against burnout (Menezes De Lucena Carvalho, Calvo, Martín, Campos, & Castillo, 2006).

The CEGPI specifically expanded on the main premise of Logotherapy, that human beings can reach meaning through: (1) creative values, a way in which people give to the world by means of their creations and work; (2) experiential values, in which a person receives something from the world with gratuity; and (3) the attitudinal value that arises when a person is unable to give nor receive from the world due to bio-psycho-social limitations (Frankl, 1991). Table 2 describes the main objectives and development of the eight sessions of the CEGPI.

Discussion

This manuscript describes the design process of an 8-session psychoeducational intervention that combines existential and cognitive therapy techniques to decrease compassion fatigue and increase the compassion satisfaction of formal caregivers. The construction of the CEGPI shows the importance of a robust theoretical framework and the inclusion of recipients’ voices to elaborate an effective intervention.

Psychoeducational interventions seem to be cost-effective (Dieng et al., 2019) and have significant effects at the individual and group level in different population groups (Cipolletta, Simonato, & Faccio, 2019; Lee et al., 2019; Perrin et al., 2019). Research shows that structured interventions that include psychoeducation, exercises, and the direct discussion of meaning in life are the most effective existential therapies (Vos et al., 2015). Also, it has been suggested that education about compassion fatigue, burnout, and existential concepts can improve support and communication among caregivers (Keidel, 2002; Masoudi & Hosseini, 2019) Thus, psychoeducation was the type of intervention chosen for the CEGPI.

Self-care, education, teamwork, the teaching of resilience and other coping mechanisms have been proven useful in the prevention of compassion fatigue (Sorenson et al., 2016). Satisfaction also positively correlates with emotional and spiritual care and having a balance between personal and work life (Alkema et al., 2008). As well, in any organization, it is important to develop interventions so that caregivers can feel they are supported in their context. Especially considering that, high-quality communication can positively influence the attitudes of employees towards organizational changes as well as maintain its proper functioning (Parra Fernández, Visbal Franco, Duran, & Badde, 2019). Accordingly, the CEGPI also intended to create awareness and teach specific strategies to develop daily practices directed towards increasing self-care; promote self-knowledge and the recognition of personal limits; foster meaningful communication with team members and colleagues; increase the awareness of meaning in caregiving; and incorporate the perspective of meaning and transcendence in the daily work of the caregiver.

The CEGPI used Logotherapy as the theoretical backbone of the intervention because it intends to enhance the sense of meaning and freedom of being a formal caregiver. It also promotes the creation of a safe environment where communication and a supportive network with colleagues develop. There is only one other intervention reported in the literature with this theoretical basis (Fillion et al., 2006). However, the CEGPI extends well beyond that framework and includes the cognitive skills that may help deal with the existential concerns intrinsic in palliative care. The CEGPI also differs from it in the number of sessions; the incorporation of the multidisciplinary team and not just palliative care nurses; and the inclusion of other topics such as compassion fatigue, an existential perspective of health, specific self-care strategies, relaxation techniques, reflective writing, and cognitive restructuring.

A non-randomized trial, reported elsewhere, showed that the CEGPI has the potential to improve well-being by effectively reducing compassion fatigue in caregivers of people in palliative care with long-term effects (Hidalgo-Andrade, Martínez-Rodríguez, & Carrasco, 2018). The CEGPI’s effects on other variables are also discussed in the cited study. This could lead to better patient care, although that connection still needs to be assessed. Future studies could also incorporate other measures to evaluate which of the sessions show greater effectiveness, from which sessions the changes begin to be visible, and which are the aspects that participants consider most useful in the long-term. Results will further help explore the benefits and limitations of this intervention.

Conclusions

This study reports the development of the CEGPI, a replicable and effective intervention based on existential and cognitive therapy, to reduce the compassion fatigue of formal caregivers in palliative care. This intervention contributes to improving the formal caregiver’s professional quality of life and therefore, the quality of care they provide to patients and their families.

Organizations that promote human development and well-being play an important social role by creating, strengthening, and developing work and life skills that benefit the person, the organization, and society as a whole (Lopera Arbeláez & Echeverri Álvarez, 2019). Given the CEGPI has proven to be beneficial, organizations that provide palliative care may implement it to increase prevent or decrease compassion fatigue levels of formal caregivers along with their already implemented policies. Further research needs to assess the CEGPI’s efficacy in other cultural contexts and with caregivers outside palliative care.

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