Duazary / Vol. 21, No. 4 – 2024 / 325 - 337
DOI: https://doi.org/10.21676/2389783X.6202
Duazary / Vol. 21, No. 4 – 2024 / 325 - 337
DOI: https://doi.org/10.21676/2389783X.6202
Clara Camila García-Cantillo1, Milgen Sánchez-Villegas2, Heidy Guzmán3, Lizeth Reyes-Ruiz4
How to cite this article: García-Cantillo C, Sánchez-Villegas M, Guzman H, Reyes-Ruiz L. Implementing measurement-based care to reduce caregiver burden: A narrative review. Duazary. 2024;21:325-37. https://doi.org/10.21676/2389783X.6202
Received on September 27, 2024
Accepted on December 04, 2024
Posted online December 27, 2024
In the psychotherapy context, the implementation of measurement-based care (MBC) contributes to the rapid reduction of psychological symptoms of emotional distress. It allows decisions to be made regarding the direction of treatment. This article synthesizes the available evidence on implementing MBC to reduce caregiver burden in the context of psychotherapy, with particular attention to the profound impact caregiving responsibilities have on caregivers' mental health. Further studies are needed to confirm the implementation of MBC in vulnerable populations requiring psychotherapeutic support, facilitating the development of psychological intervention models that highlight and contribute to the meaningful improvement of psychological symptoms. Consequently, caregivers' mental health would be adequately addressed over time while also making the impact and effectiveness of MBC visible.
Keywords: Burden; Psychotherapy; Measurement-based care; Caregivers; Disability; Mental health.
En el contexto de la psicoterapia, la aplicación de la atención basada en mediciones (MBC) contribuye a la rápida reducción de los síntomas psicológicos de malestar emocional y permite tomar decisiones sobre la dirección del tratamiento. Este artículo sintetiza la evidencia disponible sobre la aplicación de MBC para reducir la carga del cuidador en el contexto de la psicoterapia, con especial atención al profundo impacto que tienen las responsabilidades del cuidado en la salud mental de los cuidadores. Se necesitan más estudios para confirmar la aplicación de MBC en poblaciones vulnerables que requieren apoyo psicoterapéutico, lo que facilita el desarrollo de modelos de intervención psicológicos que contribuyan a la mejora significativa de los síntomas psicológicos. En consecuencia, la salud mental de los cuidadores se abordaría adecuadamente a lo largo del tiempo y se haría visible el impacto y la eficacia de MBC.
Palabras clave: sobrecarga; psicoterapia; atención basada en mediciones; cuidadores; discapacidad; salud mental.
1. Funded by Call 809 of 2018 of Minciencias, Colombia. Email: claracamilagarciacantillo@hotmail.com - https://orcid.org/0000-0002-7076-1978
2. Universidad Simón Bolívar, Barranquilla, Colombia. Email: milgen.sanchez@unisimon.edu.co - https://orcid.org/0000-0002-3732-6499
3. Universidad Simón Bolívar, Barranquilla, Colombia. Email: heidy.guzman@unisimon.edu.co - https://orcid.org/0000-0003-0700-0209
4. Universidad Simón Bolívar, Barranquilla, Colombia. Email: lizeth.reyes@unisimon.edu.co - https://orcid.org/0000-0002-9469-8387
Providing visibility and psychological support for caring for a child necessitates recognizing the extent of the burden experienced by the parent in this role.1,2 It also highlights the imperative to implement interventions to enhance and safeguard the mental health of caregivers and those for whom they are responsible.3,4 Da Silva,5 deeply clarifies the meaning and implications of "being a caregiver," referring to the action of caring, which exceeds the eight hours a day institutionalized in labor, tending to exceed a full day providing care. For example, in the United States, 60% of family caregivers offering unpaid support to dependent relatives noted that they were unprepared for the demands of this role.6
A parent caregiver is a family member who voluntarily, consciously, morally, or intentionally assumes the task of caring due to forced or unexpected circumstances.7,8 From the moment the caregiving task is accepted, the level of awareness begins to rise in favor of the person who requires care, producing in the caregiver a high sense of responsibility and a need to ensure the wellbeing and survival of the person they care for, while at the same time tending to forget about their wellbeing.6-9-10 This level of awareness leads to high psychological tension that ends up generating feelings of guilt and loss of personal identity in the caregiver, even to the point of forgetting themselves and causing financial hardship as a result of caregiving.11-15
Few programs direct their attention to the care of family caregivers or parents,16 starting because theoretically speaking, the treatment of the diagnosis of a son or daughter with a disability or affectation in their mental health is separated from the clinical approach of the person who exercises the act of care and ignores the emotional bond existing between the caregiver and the person who requires their care.17
Psychotherapy is a relevant protection factor for people who need care and protection from a mental health perspective. In addition, given the impact that diagnoses have on people's mental health, psychotherapy, with its various techniques, works as a treatment that helps reduce emotional discomfort.18,19 Therefore, in the context of psychotherapy, the implementation of measurement-based care (MBC) facilitates the rapid reduction of psychological symptoms, guides treatment decisions, strengthens the patient-therapist relationship, enhances patient engagement and willingness to change, monitors symptom severity, ensures better outcomes, reduces treatment dropout, and promotes swift adherence and improvement.20 Implementing MBC to reduce the caregiver's burden needs to include psychological therapy as a source of knowledge of the psychological experience of the caregiver. This approach demonstrates the importance of therapy in providing relief and enhancing wellbeing.
García-Cantillo,20 delves into the importance of formulating an intervention model where the approach to people with disabilities includes psychological support for the caregiver. This proposal’s relevance involves focusing on caregivers' mental impact, especially women. Health professionals must urgently address this impact on the gender of the caregiver. It is important to propose psychological interventions that address improving the mental health of caregivers and raising their quality of life beyond the phenomenon of care, the illness in the caregiver caused by intensive days of caregiving.17 That is, the time spent caring for a child with a disability or mental condition has been shown to have a direct relationship with the degree of burden. For example, research found that women presented an intense degree of burden while men did not. This finding was also attributed to the hours invested: women exceeded sixteen to twenty-four hours a day, whereas men cared for eight hours and almost always required female support. Therefore, the hours invested by men were not prolonged or often included periods of rest.17-21
This article synthesizes the available evidence on the implementation of MBC to reduce caregiver burden in the context of psychotherapy, with particular attention to the profound impact caregiving responsibilities have on caregivers' mental health. This review is essential to reveal the importance of the caregiver's mental health in the psychotherapy context through the implementation of MBC, which is efficient in reducing psychological symptoms and abandonment rates and contributes to the consolidation of a good therapeutic alliance.22,23
The article focuses on the level of burden and its gender-specific implications, along with the coping strategies that alleviate stress and the self-care practices that promote wellbeing. MBC is a standardized care initiative in clinical practice, regarded as an evidence-based practice supported by extensive research in adult clinical populations. Emerging evidence also indicates its effectiveness in youth populations.24,25 This approach helps reduce symptoms by continuously measuring progress, providing ongoing feedback, and guiding treatment adjustments.26,27
Utilizing MBC during each session enables a summary of concerns that may extend beyond the typical topics addressed during the standard session initiation. Typically, it occurs every four weeks during the acute treatment phase. This approach enhances the ability to track the client's primary issues and any emerging symptoms that may develop throughout treatment.28,29
Clinicians operating in environments that allow families to complete assessments in advance or provide the option to send assessments electronically to clients between sessions can gather this data before the session, thereby conserving valuable session time. However, patients can complete the assessments before the session starts. However, certain limitations have been identified, as some patients struggle to comprehend the questions in the questionnaires, besides facing other barriers related to costs and the adoption of platforms.30-32 Thus, the caregiver's mental health would be taken care of over time, and the impact and effectiveness of the MBC would be made visible.
Implementing MBC to reduce the caregiver's burden in the psychotherapy context
Psychotherapy is a response from Psychology to the need to address the mental health of the caregiver. International care policies have focused on studying the psychological impact of caregivers, explicitly focusing on promoting clinical interventions according to gender as a category that highlights women as the leading providers of care, requiring greater attention to their wellbeing.33
In Colombia, care policies have already been developed to help generate responsibility among states, legislation, the labor market, and the families of caregivers through Law 2297.34 This law calls on the labor system to establish timely measures for training, physical and mental health care, and income generation for caregivers. International care policies promote strategies that allow mothers who are caregivers to obtain virtual (online) jobs and support their households. This promises to be the way for health systems worldwide to promote a therapeutic approach focusing on care providers, helping preserve their mental health.
This situation underscores the importance of developing a psychological approach that promotes caregivers' mental health by establishing the foundations for a therapeutic model. This model focuses on self-care and coping with stress by promoting plans, programs, and projects with a participatory, gender, and rights-based approach to equal opportunities.17,20
Psychological therapy shows caregivers the importance of recovering their identity and the time they need for self-care and attention to reduce the burden. This reflection reveals the importance of considering the caregiver's mental health within treatment plans. In this context, implementing MBC requires repeated psychological assessments to ensure proper treatment implementation. Thus, MBC has become a standardized and validated clinical intervention for reducing psychological symptoms, from which patients, psychologists, and organizations would benefit through its development and implementation.35,37
Scott and Lewis,36 have verified the effectiveness of MBC in improving the outcomes and approaches of any psychological treatment. In the clinical context, MBC has focused mainly on assessing symptoms, patient functioning, satisfaction, and treatment feedback. Also, they recognize that incorporating systematic, constant, and monitored measurement promises progress in the patient's treatment. MBC is often an efficient and proven procedure for collecting patients' clinical information, monitoring their progress, and involving them in treatment decisions. Consequently, from this clinical approach, psychological therapy will produce results that point to the reduction of burden. This approach is essential if a significant improvement in psychological symptoms is to be ensured and measured.24,26
The implementation of MBC must be continuously supervised and measured to ensure the effectiveness of the treatment. As a result of this review, a proposal was developed in the context of psychotherapy. The proposal suggests three phases of therapeutic intervention, spanning twelve (12) sessions over three (3) months, with the possibility of repeating the measurement cycle. It emphasizes the repeated measurement of therapeutic alliance, stress, coping, and burden (Table 1).
According to McLeod et al.,25 the systematic collection of psychological symptoms will allow for constant monitoring of symptoms and will help reduce emotional distress and burden. Each intervention is designed to assess the therapeutic alliance between the caregiver and therapist by applying the BR-WAI (Brief Revised Working Alliance Inventory) questionnaire. This instrument measures the bond between client and therapist or the relationship of mutual trust, the collaborative approach, and the agreement on treatment goals and tasks.38 The Parenting Daily Hassle Scale (PDH) is a 20-item self-report measure that monitors how much parents/caregivers are affected by daily stressful situations. Applying this scale allows for an understanding of the wellbeing of the bond between the parent/caregiver and their child's needs that the caregiver requires and provides an understanding of the stress level due to the demanding work of care.39
The Zarit Caregiver Burden Interview,40 will be used to measure the burden. The Zarit scale has psychometric tests with a Cronbach's alpha of 0.88, which is usually reliable in determining the degree of burden and evaluating the impact of psychological wellbeing, the economic situation, the relationship between the caregiver and the person with a disability, and social life.41,42 Finally, according to Puri et al.,43 the Brief Coping Scale (TCS-9) is more than a psychological instrument to relieve stress; it is an educational tool that teaches how to deal with stress and manage emotions and also contributes significantly to wellbeing by focusing on problem-solving and emotion management.
Subsequently, this section outlines the detailed implementation of MBC to mitigate caregiver burden within the psychotherapy context.
| Phases | Objective | MBC | Reference |
|---|---|---|---|
| Phase 1. Implementing MBC according to the caregiver's gender | To assess the stress level, the degree of burden, and the quality of the therapeutic alliance. To explore feelings, meanings, emotions, attitudes, and behaviors about care. | BR-WAI | Brief Revised Working Alliance Inventory. (Sequence #1) Parenting Daily Hassle Scale (PDH). (Sequence #1) Zarit Burden Interview (ZBI). (Sequence #1). Psychotherapy | Mallinckrodt and Tekie.38
Acar et al.,39 Domínguez-Vergara et al.,40 Queluz et al.,41 Albarracín et al.,42 |
| Phase 2. Implementing MBC based on a coping strategy to reduce stress | To educate on gender-appropriate coping strategies. To strengthen adaptive coping strategies according to the caregiver's gender. | BR-WAI | Brief Revised Working Alliance Inventory. (Sequence #2) Parenting Daily Hassle Scale (PDH). (Sequence #2). Brief Coping Scale TCS-9. (Sequence #1) Zarit Burden Interview (ZBI). (Sequence #2) Psychotherapy | Puri et al.,43 |
| Phase 3. Implementing MBC to raise self-care awareness | To assess the caregiver's stress and coping level. To focus psychotherapy on developing self-care strategies in the caregiver | BR-WAI | Brief Revised Working Alliance Inventory. (Sequence #3) Parenting Daily Hassle Scale (PDH). (Sequence #3). Zarit Burden Interview (ZBI). (Sequence #3) Psychotherapy Brief Coping Scale TCS-9. (Sequence #2). | According to McLeod et al.,25 the systematic collection of psychological symptoms will allow for constant monitoring of symptoms and will help reduce emotional distress and burden. |
Psychotherapeutic intervention based on the degree of burden and its implications according to gender
The degree of burden varies according to the type of disability, mental disorder, or condition that the parents care for, as well as the severity and the time they have been performing the care.20 The peculiar characteristics of the disability of the person being cared for are also very relevant factors regarding the degree of burden the caregiver may suffer.44,45 Burden has proven to be a line of intervention that must be treated in psychological therapy to reduce emotional distress.
Burden in parent caregivers is a process that involves the physical and emotional exhaustion required by the act of caring. The burden is different in both men and women.20,21 Therefore, the need to offer individual psychotherapy to both men and women could be pertinent, not excluding, of course, group interventions or meetings.17 An objective burden has to do with the physical fatigue of caring. The subjective burden refers to psychological exhaustion.46 There is also a factor underlying the subjective burden, which has to do with the expectations of care and the desire for the illness to improve. When expectations fail, and the necessary coping to address care is not available, mental illness is generated in the caregiver. Da Silva5 entitled this “caregiver syndrome” to emphasize the emotional states that urgently deserve to be treated to protect the mental health of the caregiver.
Psychotherapy will need to address to reduce the degree of caregiver burden: The individual psychological experience of caring refers to the perceptions, feelings, memories, and motivations attributed to the act of caring. Betancourt-Cadavid et al.,47 rescue the concept of psychological experience as a basic Husserlian phenomenological notion that allows us to research the meanings in consciousness. The authors reflect on the operation of consciousness in the following way:
With the recognition of the passive layers of the acts of consciousness, as previous and founding experiences of the active layers of a self that constitute its correlation with the world, the search for the origin of what is presented in the experience is gradually constitutive of intentionality that is a possibility of revelation and constitution of the world in the consciousness of that self who lives and experiences the world opens the way in genetic analysis.47
Following the above, when an individual experiences something in their consciousness, they perceive the object as it appears within that awareness. Their perception reflects the characteristics of what they have encountered and, consequently, of its meaning. This process is critical, as it is within consciousness that emotional responses and affections are generated.
Seeking the meanings that the caregiver attributes to his or her psychological experience would allow for a deeper understanding of the affective bond between the caregiver and the person receiving care. Likewise, Moral-Fernández et al.,48 underscore the importance of the psychological experience in understanding the construction of the caregiver role, identifying the different moments that are part of the process of going from being a family member to an informal caregiver. According to Applebaum et al.,49 the adequate demand for help, the attitude of collaboration in care tasks, and the displays of gratitude towards the caregiver are elements that decisively contribute to reducing the feeling of the psychological burden of the caregiver.
Understanding the functioning of the caregiver's family and raising awareness of the caregiver's work would also be fundamental. Factors related to the family have been identified as sources of greater or more intense burden, including family dynamics, the distribution of roles and responsibilities, and the perception of help and gratitude.50
Since the burden manifests as chronic stress, it is important to research and delve into the circumstances of daily life that are typically long-lasting rather than temporary.51 Caring for a child diagnosed with a disability or with a mental health condition is a long-lasting circumstance of the human life cycle. The work of caring for a son or daughter has been institutionalized as a female task.50 In this sense, the maternal role becomes a stressful agent that modifies the quality and lifestyle of the mother.
The burden is usually intense in women, while men do not have a burden.20 In a comparative study carried out by García-Cantillo,21 in collaboration with the Argentine Association of Specialists on Work Studies, differences were found in terms of the level of burden according to the gender of the caregiver. The burden is intense in women. Gender is highly relevant in the clinical approach to caring for caregivers. Here, it would also be important to research the quality of life, including sleep, since insomnia is a consequence of the physical condition of the caregiver, which does not allow them to have the sleep periods necessary for adequate rest.
García-Cantillo,20 revealed that men frequently had less physical and emotional discomfort than mothers who are caregivers, who tend to suffer more from anxiety and depression problems, lower subjective wellbeing, and sleep quality, associated with worse physical health. Here, the objective and subjective burden is shown, which must be measured at different time intervals to evaluate the effectiveness of the treatment.46
The presence or absence of burden could be related to the emotional reaction of the father or mother assuming the role of caregiver, with coping being the adaptive response used when facing a demanding situation such as caregiving. In the comparative study, women in both countries exhibited confrontational coping strategies—that is, attempts to directly solve the situation through direct, aggressive, or potentially risky actions—which increases the probability of mental exhaustion in the woman or mother caregiver.21
Psychotherapeutic intervention based on the coping strategy to reduce stress
According to Pilatasig,52 stress treatment should focus on the social factors accompanying the caregiver. In the therapeutic intervention, focusing on the stressors accompanying the caregiver's social life (family, economic, and marital) would be helpful. Considering that many times, the nature of the stressor is found in the caregiver's personal life. Social conditions such as life as a couple, socioeconomic status, and gender-assigned roles are often involved in both the origin and the stressful consequences.53,54,55
In the García-Cantillo20 research, differences were found regarding coping strategies. Father caregivers faced the task of care with the Positive Reappraisal and Support-Seeking strategies. Mother caregivers had worse emotional distress, including symptoms of sadness, anguish, loneliness, and hopelessness, when facing the task of care with the coping strategies of confrontation, flight avoidance, and isolation. From this perspective, women had a lower level of stress.
Psychotherapeutic intervention to raise self-care awareness
Research has shown that self-care awareness is the main difference between male and female caregivers.20 Self-care is the line of therapeutic intervention that requires the most time to execute and could be considered the management of treatment, even if the objective is to reduce burden. Therefore, the therapeutic approach will raise self-care awareness and perpetuate the caregiver's wellbeing over time to reduce the burden and stress. Addressing caregivers' needs and providing them with related interventions minimize the negative health effects and alleviate their caregiver burden.55,56
Caregivers who devote more than sixteen hours a day to caring may simultaneously be experiencing a higher level of burden and a lower level of awareness of their self-care.56 Once the responsibility of caring for another person has been acquired, awareness simultaneously turns towards the other.48 Psychological stress can be a form of protection that generates relief from the psychological stress produced by the exhaustion of caregiving, including the feeling of guilt that arises when attention is diverted from caring for the other to caring for oneself. It would be necessary to research whether the caregiver's personality structure is also affected by the intensity of the hours and the disconnection from themselves, their person, and their interests. This is related to a disconnection from self-awareness and their physical and psychological condition.
The importance of implementing MBC through psychotherapy lies primarily in its effectiveness in reducing the degree of caregiver burden and significantly improving the mental health of this population. The degree of burden will determine the time and depth of psychological therapy. It is related to the level, deterioration, or progression of the disease they are caring for, the quality of the relationship between the caregiver and the son or daughter, and the emotional bonds that develop over time. Further studies are needed to confirm the implementation of MBC in vulnerable populations requiring psychotherapeutic support, facilitating the development of therapeutic intervention models that highlight and contribute to the meaningful improvement of psychological symptoms. Consequently, caregivers' mental health would be adequately addressed over time while also making the impact and effectiveness of MBC more visible.
The in-depth review of the meaning and significance of the act of caring and its implications for the dimensions of the caregiver's life highlights the premise that the provision of care requires clinical and conceptual recognition, which must be addressed through the efforts of clinical psychology. This approach is necessary not only to explain the caregiver's behavior and understand the emotional dynamics of their new life routine but also to delve deeper into the structure of the personality and the changes produced by the disconnection from their identity and the loss of the self in the permanent connection and dedication to the other. Offering measured and repeated psychological support that demonstrates the effectiveness of the treatment over time could prolong the caregiver's wellbeing.
This article is proposed because of the doctoral thesis "Adaptive Reactions of Informal Caregivers of a Child Diagnosed with a Disability in the Department of Atlántico," which was funded by Call 809 of the year 2018: Training of High-level Human Capital for the regions, MINCIENCIAS—Ministry of Science, Technology, and Innovation of Colombia.
The authors declare that they have no conflict of interest.
CCGC contributed to the conceptualization, literature review, proposal design, drafting, and final approval of the manuscript.
MSV collaborated on the literature review, conceptualization, selection of the journal, and application of Vancouver standards.
HG facilitated the understanding of the MBC concept, provided the tools to incorporate it into clinical practice, and reviewed the final revision of the manuscript.
LRR supported and gave final approval of the manuscript.