Autism and Developmental Disorders
2024. Vol. 22, no. 3, 11–19
doi:10.17759/autdd.2024220302
ISSN: 1994-1617 / 2413-4317 (online)
Parental Adherence to Treatment of Children with Mental Disorders as a Psychological Problem
Abstract
Objectives. A child’s illness is a major challenge that imposes restrictions on all family members. Not all parents of sick children strictly follow medical prescriptions, which emphasizes the importance of developing recommendations to improve parental adherence to treatment. It is necessary to distinguish between the terms adherence and compliance, where the former emphasizes active participation, and the latter — the actual implementation of prescriptions without an emphasis on involvement. The purpose of the study is to systematize approaches to the problem of adherence to treatment to operationalize the concept of “parental adherence to treatment”.
Methods. The analysis of Russian and foreign studies of the concept of parental adherence was conducted. Russian works were selected based on relevance and availability of an evidence base for the study. Due to the low prevalence of the term in Russian studies, foreign sources had a great influence on the operationalization of the concept. Foreign sources were selected depending on the development depth of the problem and the representativeness of the sample to actualize the problematic of the phenomenon of parental treatment adherence in the field of clinical psychology. The following electronic resources were used for the analysis: eLIBRARY.ru, PubMed, ResearchGate, ConnectedPapers and others.
Results. The main components of the phenomenon of parental adherence to treatment are identified: following the recommendations of doctors and establishing trusting relationships between parents, medical personnel and the child. Such relationships contribute to more effective treatment and accompany the child in the rehabilitation process. Given the possible difficulties with accepting treatment, interpersonal interaction between parents and doctors helps to individualize the treatment plan taking into account the characteristics of each family. The authors provide a definition of the phenomenon of “parental adherernce to treatment”.
Conclusions. Currently, the problem of increasing the level of parental treatment adherence is emphasized by the parents’ lack of knowledge of child rehabilitation methods and their emotional rejection of the diagnosis. Therefore, operationalizing the concept of parental adherence to treatment will aid in formulating more useful recommendations on treating a child for parents.
General Information
Keywords: medical adherence; compliance; adherence; parental adherence; disease awareness; psychoeducation; illness attitude; medical support
Journal rubric: Education & Intervention Methods
Article type: scientific article
DOI: https://doi.org/10.17759/autdd.2024220302
Received: 05.08.2024
Accepted:
For citation: Efimov K.R., Ivanov M.V. Parental Adherence to Treatment of Children with Mental Disorders as a Psychological Problem. Autizm i narusheniya razvitiya = Autism and Developmental Disorders, 2024. Vol. 22, no. 3, pp. 11–19. DOI: 10.17759/autdd.2024220302. (In Russ., аbstr. in Engl.)
Full text
Research Problem Statement
In most cases, the family always perceives the diagnosis of the child with difficulty, realizing the sacrifices and limitations [6; 11; 18]. The child remains in the full care of his parents, possibly for life. The process of accepting this fact is always very painful, given the unexpected manifestation of some mental disorders in childhood, for example, autism spectrum disorders (ASD), attention deficit hyperactivity disorder (ADHD), childhood schizophrenia. The condition of the parents is complicated by the search for treatment, which in most cases does not lead to a full recovery. At the same time, parental support for the treatment of a sick child plays a crucial role in the (re)habilitation process. Many authors have repeatedly noted the involvement and commitment of parents to the treatment of their child as the cornerstone of improving his condition [10; 17; 19]. Unfortunately, even severe mental development disorders do not mean a high level of parental commitment to treatment - not all parents are ready to fully comply with the doctor's orders. Thus, the problem of parental commitment to treatment of children with mental disabilities requires further immersion in its essence in order to develop programs to help parents of sick children. Committed parents often more actively search for information about the disease, are interested in modern treatment and rehabilitation methods and, importantly, closely cooperate with doctors and other specialists, which, in turn, significantly improves the quality and effectiveness of their child's treatment [3; 6; 13].
The purpose of the study is to systematize approaches to the problem of treatment commitment to operationalize the concept of "parental commitment to treatment".
In modern literature, one can find the terms adherence, compliance and commitment to treatment as three equivalent concepts. Some authors in their works, the title of which includes compliance, indicate that there is no difference in their use [1; 9]. For our study, it is necessary to look at these terms in more detail in order to highlight the main characteristics of the concept of parental commitment to treatment. Thus, the term adherence, which comes to us from the Latin phrase “adhærēns”, means “sticking”, and in the medical sense is used to describe the degree to which a patient’s behavior – taking medications, following a diet, and performing procedures and lifestyle changes prescribed by a doctor – corresponds to the agreed recommendations of a doctor or medical staff [24; 29; 30; 31]. It is important that this term, in addition to simple compliance, also implies the patient’s involvement in the treatment process, his or her active participation. In turn, the term compliance describes the degree to which a patient’s behavior corresponds to the doctor’s recommendations. Unlike adherence, here there is a greater emphasis on actual compliance with prescriptions, without an emphasis on the psychological aspect of the patient’s involvement and motivation [5; 6; 9; 13; 14; 18; 25; 27; 32]. In essence, this is the patient’s readiness to “listen to the doctor”, sometimes without even delving into the essence of the disease and the treatment process. Over time, especially in Western medical practice, the term began to be replaced by "adherence" to emphasize the importance of the patient's active participation in the treatment process [21; 22; 24; 29; 33].
The term "adherence to treatment" in the Russian-language medical and clinical-psychological context is close to adherence, with the only difference being that it emphasizes the patient's involvement and psychological attitude to treatment, the idea that the patient does not simply follow the recommendations, but sincerely believes in their effectiveness and importance for his health [2; 15; 20; 26; 27].
Thus, we can already talk about the unequal meaning of these terms, but their features shed light on the depth of the concept of adherence to treatment. This is a multifaceted aspect of clinical-psychological research that requires further development.
In addition, taking into account epidemiological data on childhood morbidity and the development of a system for the early detection of mental developmental disorders [7; 8; 12], developing treatment adherence guidelines for parents can be very helpful for the therapeutic alliance with the physician and other professionals providing care to the child.
The purpose of the study is to systematize approaches to the problem of treatment commitment to operationalize the concept of "parental commitment to treatment".
In modern literature, one can find the terms adherence, compliance and commitment to treatment as three equivalent concepts. Some authors in their works, the title of which includes compliance, indicate that there is no difference in their use [1; 9]. For our study, it is necessary to look at these terms in more detail in order to highlight the main characteristics of the concept of parental commitment to treatment. Thus, the term adherence, which comes to us from the Latin phrase “adhærēns”, means “sticking”, and in the medical sense is used to describe the degree to which a patient’s behavior – taking medications, following a diet, and performing procedures and lifestyle changes prescribed by a doctor – corresponds to the agreed recommendations of a doctor or medical staff [24; 29; 30; 31]. It is important that this term, in addition to simple compliance, also implies the patient’s involvement in the treatment process, his or her active participation. In turn, the term compliance describes the degree to which a patient’s behavior corresponds to the doctor’s recommendations. Unlike adherence, here there is a greater emphasis on actual compliance with prescriptions, without an emphasis on the psychological aspect of the patient’s involvement and motivation [5; 6; 9; 13; 14; 18; 25; 27; 32]. In essence, this is the patient’s readiness to “listen to the doctor”, sometimes without even delving into the essence of the disease and the treatment process. Over time, especially in Western medical practice, the term began to be replaced by "adherence" to emphasize the importance of the patient's active participation in the treatment process [21; 22; 24; 29; 33].
The term "adherence to treatment" in the Russian-language medical and clinical-psychological context is close to adherence, with the only difference being that it emphasizes the patient's involvement and psychological attitude to treatment, the idea that the patient does not simply follow the recommendations, but sincerely believes in their effectiveness and importance for his health [2; 15; 20; 26; 27].
Thus, we can already talk about the unequal meaning of these terms, but their features shed light on the depth of the concept of adherence to treatment. This is a multifaceted aspect of clinical-psychological research that requires further development.
In addition, taking into account epidemiological data on childhood morbidity and the development of a system for the early detection of mental developmental disorders [7; 8; 12], developing treatment adherence guidelines for parents can be very helpful for the therapeutic alliance with the physician and other professionals providing care to the child.
Operationalization of the Concept "Parental Treatment Adherence"
In the Russian-language medical and psychological literature, there are concepts similar in meaning to "parental commitment", such as "involvement of relatives in the treatment process" [11], "family commitment to the child's treatment" [2]. The influence of parental awareness, their educational level, psychological readiness to accept the child's illness and active participation in the treatment process is also discussed. In general, it can be said that the term "parental commitment to treatment" may not be used directly in every scientific article, the concept of active participation of parents in the treatment process and care for the health of children, of course, permeates modern clinical-psychological, sociological and medical research, both in Russia and abroad. Thus, researchers agree on the critical importance of this aspect for achieving the best clinical outcomes in children's healthcare [10; 11; 14; 15; 19; 23].
Parental treatment adherence is defined in foreign sources as active participation of parents in the treatment process and following the directions and recommendations of medical personnel to ensure optimal health and well-being of the child [21; 22; 24; 28; 29; 33; 34]. This includes compliance with taking prescribed medications, approaching medical equipment or procedures, as well as timely seeking medical help. Thus, we can consider this concept as the basis for defining the very concept of parental treatment adherence in the Russian psychological nomenclature [6; 16].
Sufficiently high parental treatment adherence is especially important for children with congenital pathologies or chronic diseases, where regular and correct treatment can significantly affect their health and quality of life. Ensuring consent and compliance with treatment recommendations of medical personnel by parents is a key factor in achieving optimal results [1; 10; 19]. It is the parents who are responsible for accompanying the child not only to the doctor's office, stabilization of the condition or achievement of therapeutic remission, but also until the moment of achieving social independence. The empathic influence of constant support from loved ones has been repeatedly noted as a primary aspect of the positive dynamics of children's recovery. The combination of doctor-patient, doctor-parent, parent-patient alliances allows parents to secure not so much ideal adherence to the doctor's recommendations as the conclusion of an unspoken contract on the mutual work of all participants in a single treatment and (re)habilitation process. In the process of joint full dedication of all parties during the treatment of the child, the previously selected forms and methods can be adjusted, giving a broader view of the course and prognosis of the disease. Thus, it is important to study the psychological mechanisms or factors of parental commitment to treatment of children with mental disorders, which will allow for timely provision of treatment and rehabilitation assistance during favorable ontogenetic periods of childhood.
Various approaches can be used to determine parental commitment to treatment:
1. self-report assessment of parents: questionnaires or interviews with parents to obtain information about their understanding and adherence to treatment recommendations [2; 16];
2. observation and assessment in practice: observation of parents during appointments, home visits, or procedures to assess their compliance with treatment instructions [1; 16];
3. assessment of treatment results: analysis of data on the child's health status and treatment progress to draw conclusions about parental commitment [16].
Taking into account the individual characteristics of each family and providing targeted support for families raising a child with mental illness is of the utmost importance. Every family is unique and the circumstances in which it lives can vary greatly. Socioeconomic status, cultural and religious differences, and family structure have a significant impact on the approach to treating and raising a child with mental illness. For example, one family may have access to private healthcare, while another is entirely dependent on public services; a single parent may need different support than a family where both parents are actively involved in raising the child. Targeted support allows professionals to offer the most effective forms of support, whether it be therapy, psychoeducational programs, or social assistance. It also helps to allocate resources effectively, directing them to where they are really needed, reducing the likelihood of over- or under-support. Taking into account the needs of the family helps to create a stable and favorable environment for the child, improving his development and adaptation.
In addition, families often need psychological support and training to better understand mental illnesses and methods of working with the child [4]. Help in developing positive parenting skills can significantly improve the quality of life of the entire family. Developing positive parenting skills and understanding of mental disorders affects not only the child, but also all family members, reducing stress and improving the mental health of parents.
Thus, taking into account the individual characteristics of each family and providing targeted assistance creates conditions for the most effective support for families with children with mental illnesses. This not only improves the quality of life of all family members, but also contributes to more successful adaptation and development of the child.
Parental treatment adherence is defined in foreign sources as active participation of parents in the treatment process and following the directions and recommendations of medical personnel to ensure optimal health and well-being of the child [21; 22; 24; 28; 29; 33; 34]. This includes compliance with taking prescribed medications, approaching medical equipment or procedures, as well as timely seeking medical help. Thus, we can consider this concept as the basis for defining the very concept of parental treatment adherence in the Russian psychological nomenclature [6; 16].
Sufficiently high parental treatment adherence is especially important for children with congenital pathologies or chronic diseases, where regular and correct treatment can significantly affect their health and quality of life. Ensuring consent and compliance with treatment recommendations of medical personnel by parents is a key factor in achieving optimal results [1; 10; 19]. It is the parents who are responsible for accompanying the child not only to the doctor's office, stabilization of the condition or achievement of therapeutic remission, but also until the moment of achieving social independence. The empathic influence of constant support from loved ones has been repeatedly noted as a primary aspect of the positive dynamics of children's recovery. The combination of doctor-patient, doctor-parent, parent-patient alliances allows parents to secure not so much ideal adherence to the doctor's recommendations as the conclusion of an unspoken contract on the mutual work of all participants in a single treatment and (re)habilitation process. In the process of joint full dedication of all parties during the treatment of the child, the previously selected forms and methods can be adjusted, giving a broader view of the course and prognosis of the disease. Thus, it is important to study the psychological mechanisms or factors of parental commitment to treatment of children with mental disorders, which will allow for timely provision of treatment and rehabilitation assistance during favorable ontogenetic periods of childhood.
Various approaches can be used to determine parental commitment to treatment:
1. self-report assessment of parents: questionnaires or interviews with parents to obtain information about their understanding and adherence to treatment recommendations [2; 16];
2. observation and assessment in practice: observation of parents during appointments, home visits, or procedures to assess their compliance with treatment instructions [1; 16];
3. assessment of treatment results: analysis of data on the child's health status and treatment progress to draw conclusions about parental commitment [16].
Taking into account the individual characteristics of each family and providing targeted support for families raising a child with mental illness is of the utmost importance. Every family is unique and the circumstances in which it lives can vary greatly. Socioeconomic status, cultural and religious differences, and family structure have a significant impact on the approach to treating and raising a child with mental illness. For example, one family may have access to private healthcare, while another is entirely dependent on public services; a single parent may need different support than a family where both parents are actively involved in raising the child. Targeted support allows professionals to offer the most effective forms of support, whether it be therapy, psychoeducational programs, or social assistance. It also helps to allocate resources effectively, directing them to where they are really needed, reducing the likelihood of over- or under-support. Taking into account the needs of the family helps to create a stable and favorable environment for the child, improving his development and adaptation.
In addition, families often need psychological support and training to better understand mental illnesses and methods of working with the child [4]. Help in developing positive parenting skills can significantly improve the quality of life of the entire family. Developing positive parenting skills and understanding of mental disorders affects not only the child, but also all family members, reducing stress and improving the mental health of parents.
Thus, taking into account the individual characteristics of each family and providing targeted assistance creates conditions for the most effective support for families with children with mental illnesses. This not only improves the quality of life of all family members, but also contributes to more successful adaptation and development of the child.
The participation of parents in treatment is crucial for the successful and effective progression of the treatment process. The support of parents in maintaining high adherence, ensuring the availability of information and educational programs, and fostering trustful relationships between parents and medical professionals plays an important role in enhancing the level of parental adherence to treatment.
The operationalization of the concept "parental adherence to treatment" has profound implications for theory and practice in the fields of pediatrics, psychiatry, and medical (clinical) psychology. It allows the scientific community to better understand and address the complex relationships between parental behavior and children's health.
The scientific and practical significance of operationalizing this concept is represented in four different aspects, presented in the table below:
Table
Scientific and Practical Significance of Operationalizing the Concept of "Parental Adherence to Treatment"
|
Measurement and Tools |
The development of reliable and validated tools to assess parental adherence allows for quantitative research on its impact on child health outcomes. These tools can evaluate various aspects of adherence, including medication regularity, procedure compliance, and participation in therapeutic sessions. |
|
Treatment Effects |
Determining the level of parental adherence can directly correlate with treatment outcomes, such as improvements in the child's health condition or the effectiveness of intervention programs. This lays the foundation for the development of more effective methods to engage parents in the treatment process, which can lead to improved medical and psychological outcomes for children. |
|
Intervention Programs |
Scientific data obtained from the operationalization of parental adherence can be used to create, test, and adjust intervention programs aimed at improving this adherence. For example, a program might include parental education, psychological support, or social services. |
|
Health Policy |
Research in the field of parental adherence can inform policymakers and healthcare practitioners about the need for resources or changes in practice aimed at improving treatment outcomes for children. |
Clarification of the concept and development of theoretical models form the theoretical significance of operationalizing the concept of parental adherence to treatment. Operationalization helps to precisely define what parental adherence includes, distinguishing it from related concepts such as general adherence to medical recommendations or parental responsibility. This enables researchers to accurately measure the variables under study and clearly interpret their impact on treatment outcomes. In turn, understanding how and why parents become involved in the child's treatment process contributes to the development of well-founded theoretical models that explain the behavioral dynamics of parents in the context of healthcare. It also helps to identify potential weak links in their adherence that can be addressed through targeted interventions.
Conclusion
The operationalization of the concept of parental adherence to treatment is an important issue in supporting the treatment and rehabilitation process in pediatric clinics for somatic and mental disorders. Given the heterogeneity of approaches to understanding the concepts of compliance, treatment adherence, and adherence in pediatrics, psychiatry, and medical (clinical) psychology, there is a need to establish and understand the clear boundaries of what should be defined under such a complex and multifaceted phenomenon as parental adherence to treatment.
Currently, the following definition of parental adherence to treatment can be distinguished: a combination of parental involvement and psychological readiness for the child’s treatment, and the extent to which the parent's behavior corresponds to the doctor's recommendations, with the aim of creating the most favorable conditions for the child's treatment and rehabilitation. Thus, the clinical-psychological aspect of parental adherence to treatment includes not only the unconditional following of the treating physician’s recommendations but also the establishment of trustful relationships between the parent, who is in constant contact with the sick child and experiencing deep emotional involvement, and the medical staff, who are accustomed to observing the patient’s behavior and interaction with parents in a medical setting.
The outlined definition aims to establish productive relationships from the perspective of treatment and the child’s support among all participants in these complex and sometimes lengthy processes. Considering that the prescribed treatment may not always have a favorable impact on the child and the parents, who must adhere to the medication regimen, it is important not to overlook the interpersonal interaction provided by the parent or relative. By focusing on building understanding and mutual help between the doctor and the parent, it will be easier for specialists to adjust the treatment and rehabilitation plan, taking into account the individuality and uniqueness of each family as a dynamic system.
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