Personal Factors and Participation

how should professionals proceed?

“The story of each of us is the story of an individual on the way to becoming a person. What makes us a person is not our ID card. The ID card has no room for those things that make us a person. What makes us a person is the way we think, the way we dream, the way we become others.” Mia Couto in “Se Obama fosse Africano” [1]

The original German version of this text can be found here:

Introduction

The International Classification of Functioning, Disability and Health (ICF) is a combination of the biomedical model of health and the social model of health into the biopsychosocial model. The ICF recognizes and documents psychological and contextual aspects that are relevant for health besides the biological characteristics of a person. As part of the contextual factors (together with environmental factors), the personal factors of the ICF are defined as “…the specific background of life and lifestyle of a person and include aspects of the person that are not part of their health problem or condition. These factors can be gender, ethnicity, age, other health problems, fitness, livestock, habits, education, coping styles, social background, education, profession, as well as past and current experiences, general behaviour patterns and character, the individual psychological capacity and other aspects that in their totality are individually might have a role in causing disability.” [2].

Adapted from copyright WHO, 2001

According to the ICF, participation is the involvement of a person in a life situation. When describing functional health with the ICF information about the context of a person, including their personal factors is required. With the attempts over the last 15 years to use the ICF in describing the health status of populations, suggestions to define and systematize personal factors have generated controversial discussions [3][4][5][6]. The absence of defined categories and codes in the area of personal factors is criticized with the argument, that without them the ICF only describes the patient as an object and there would be the risk to lose the person out of sight [7]. This concern and the demand to define personal factors more clearly and associating them with codes, is based on two fundamentally different usages of the ICF:

First, it can be applied for individual care and support of people with different health conditions/disabilities/problems and second, the ICF can also be part of a larger data collection to improve healthcare planning for populations or groups/cohorts with health problems. Attempts to define single personal factors encounter the lack of a clear distinction of which observed aspects are inherent to a person and which are part of a specific situation that this person experiences during a certain moment. Some aspects could be part of her body structure or function and be coded accordingly under body functions and body structures. On the other hand, the person might perceive exactly those aspects as very unique factors that actually define her as a person. The logic of the ICF (as that of any classification) requires “that single categories should be representing the intended concept clearly, precisely and unambiguously so that empirical conclusions can be made based on observable, testable or indirectly derived informations” [2]. The following text further analyses and discusses the implications of this controversy.

Personal factors in the ICF

Observing the development of the ICF starting from its test version, the ICIDH (International classification of impairments, disabilities and handicaps), to the ICIDH–2, the main changes made were the addition of contextual factors (environmental factors and personal factors) and the adoption of a multidirectional instead of a linear model. The linear model defined disability as a direct consequence of disease and aspects of the context were not considered [8].

Badley, E.M., 1995. The genesis of handicap: definition, models of disablement, and role of external factors . Disabil.Rehabil , 17(0963–8288 (Print)), pp.53–62.

To better understand the zeitgeist and compare these models that led to such development one might want to refer to the publications of Badley, Nagi, Finkelstein, Chamie and Fougeyrollas [in 9]. Especially the group around Fougeyrollas defined personal factors as being a part of the body systems and abilities [10][11]. Based on the critique of the ICIDH model (for lack of environmental factors, linearity) [12] they developed the Disability-Creation-Process Model (DCP Model). In that model the area of personal factors includes organic body systems as well as personal capabilities. This means that the components body functions, structures, activities and personal factors of the ICF are all seen as being a part of the person. That person interacts with the environment executing life habits. Under the influence of risk factors on the person disability is created through a change in that interaction. That change is defined as the Disability Creation Process. Fougeyrollas et al. favour this model with the argument that in order to decide about interventions it is relevant to know if those interventions will be directed towards the person or towards the environment, as each of these directions will require completely different approaches [11]. Many aspects found in the DCP model under personal factors can also be found in the ICF in the components of body functions, structures and activities. Those attributions also depend on cultural and societal influences and can vary, as explained in the manual for the application of the ICF [13]. This is one of the reasons why it was decided not to develop codes for elements of the personal factors.

Fougeyrollas, P., Noreau, L. & Boschen, K.A., 2002. Interaction of Environment with Individual Characteristics and Social Participation: Theoretical Perspectives and Applications in Persons with Spinal Cord Injury. Topics in Spinal Cord Injury Rehabilitation, 7(3), pp.1–16.

Personal factors as the basis for treatment:

Evidence-based medicine is easily misunderstood as being simply the availability of scientific results derived from double-blind randomized studies. According to Guyatt, one of the founders of evidence-based medicine, evidence-based practice is the result of the combination of three essential elements: the best available scientific evidence, the expertise and experience of the professional as well as the values and goals of the patient [14]. Therefore, the expression of personal aspects of the patient is an essential part of evidence-based practice and necessary for shared decision-making. It demands from professionals to obtain relevant personal factors of their patients and consider them when making clinical decisions. Such an approach results in more individualized types of treatment. Patients included in a shared-decision making process achieve greater autonomy and empowerment [15]. In clinical practice, it is therefore essential to capture personal factors and document them in order to understand, reduce our eliminate restrictions of participation. The question remains on how to best capture these personal factors and consider them when deciding about treatments.

What makes a person and how to describe it?

Even the origin of the term person describes something arbitrary and not transparent. The old Greeks used the term person to refer to the masks used in greek drama. Each mask was to symbolize a certain role that an actor played [16]. Over time the definition of the term person changed and went from the ability to express an own will, being rational, to being a synonym for human being in different stages of development (consider for example the discussion of personhood in relation to early fetal diagnostics and abortions) [16]. The philosopher Harry Frankfurt defines person as: “those attributes which are the subject of our most humane concern with ourselves and the source of what we regard as most important and most problematical in our lives.” In this context he sees the essence of a person closely related to the conscience of free will and acting accordingly [17]. Fox and Ward refer in their work to the philosophical publications of Deleuze and Guattari, who describe the subjectivity of a person as the result of a continuously changing “assemblage” of a “body without organs” with elements of the environment [18]. This concept was initially developed to understand the personality of people with schizophrenia. In comparison to the definition of Frankfurt they see the person not only as an acting subject but depending of the situation also understand the environment as part of that person. In the area of rehabilitation Gibson et al. apply this concept on a case example summarized here [19]: they present the girl Mimi in her environment. Depending on the situation, Mimi’s identity changes. When she uses her wheelchair, she experiences herself with the wheelchair as one unit. In other situations, for example during body hygiene, she understands herself with her mother as one unit, and in other situations, for example during a conversation, she and her mother are both individual and separate persons, each part of the conversation with their own ideas and desires. This exemplifies that personal factors cannot be described with the same certainty and organized into chapters as clinical findings that are related to the “body with organs”. The categorization and description of personal factors will always be subjective. In order to capture personal factors, it is essential to have the individual patient/client included in the process to understand their individual needs, there situation in life and their goals. The decision about therapy or rehabilitation to diminish restrictions of participation results from that interaction. Under this perspective and to allow the complete and individualized documentation of personal factors the box for personal factors in the ICF framework is left empty. It can be understood as an empty sheet of paper to be filled collaboratively by patients and professionals according to the situation. Important personal factors can be documented in a narrative text instead of checking off pre-defined categories on a questionnaire.

The ICF and public-health data

Physicians of the 19th century, like John Snow in England and Rudolf Virchow in Germany, recognized that the systematic collection of health and environmental data of a population is of fundamental importance for public health [20][21]. Based on their pioneering work public health services were established around the world and the role of the state as a responsible and active player in the maintenance of populational health was established [22]. After these first revolutionary developments the systematic collection of health data has become a standard around the world. The classification systems of the World Health Organization are valuable instruments in those efforts of standardization. The launch of the ICF was linked to the hope to obtain a better understanding about the health situation of populations than what classic health statistics could deliver so far. Besides information about diagnosis, immunization rates and mortality rates it was the hope to also obtain relevant information concerning the social aspects of disease and disability. Wenzel and Morfeld describe an increase of use of the ICF in different areas of action starting from Early Intervention services to Workplace Rehabilitation [23]. They also describe international examples of the ICF being used to define indicators of health and a better assessment of barriers and facilitators to improve the inclusion of people with disabilities. In Germany, the ICF is mentioned in the public health report but the systematic capture of ICF data has not yet been established.

With the current rapid technological development it is probable that the individual challenges of citizens with health problems will be captured in different ways than traditional health statistics have been collected. Instead of having centralized surveys being sent through institutions and administrations of the healthcare system it is now possible for citizens to capture and share their data independently. People become the owners, administrators and transmitters of data. First examples for such initiatives can be found in Finland, were electronic health portals are being developed in order to collect ICF-based data shared by the citizens [24]. Such a development allows a real-time analysis of the health situation of the population and can contribute to improved functional health and social participation of citizens independently of purely medical diagnostic criteria. In addition, such an initiative allows to capture contextual factors such as the social and physical environment of the population which then can inform the need for regulations and policies with the goal to improve general wellbeing. Citizens can use that technology to share their functional status proactively instead of waiting for surveys being sent to them or being part of a selected group of one institution or department. This initiative is part of the political decision made in Finland to join the services from the ministries of social welfare and health in one ministry, which reflects the current understanding of health within a biopsychosocial model[25].

Personal factors and public health

The goal of capturing data of populations is to be able to aggregate and analyse these data to make them available for political decisions. From a biomedical perspective, the fight against diseases requires data about causal agents like toxins and pathogens. As mentioned above, as early as in the 19th century John Snow and Robert Virchow stated that data about the environment (contaminated water wells, poverty, famine) are equally important to improve population health.

Today, we have the possibility to describe the environment using ICF data and therefore capture not only physical contextual factors but also factors like the availability of assistive devices, health personal, teachers and the attitudes of these professionals and other people in the population towards people with chronic health conditions and disabilities. These are additional valuable insights that possibly will allow not only further physical changes to eliminate barriers in our environment but also inform new policies and laws to improve participation, reduce barriers in all areas of public life strengthening the position of people with chronic health conditions and disabilities in our society. Contrary to the situation in the 19th century in many countries today populational health is not about the survival of people threatened by infections but about the coexistence and equal participation of people in a diverse society.

What role could the systematic capture of personal factors have within such a vision? Geyh et al. provide a literature review about the use of personal factors and propose a list of candidates for such a classification [26]. Another group of German-speaking professionals, initiated by the MDK from Lower Saxony (Medizinischer Dienst Niedersachsen, a medical advisory for insurance companies) published a consensus paper with an even more detailed list of categories for personal factors associated with alphanumeric codes (Grotkamp et al.)[3]. According to the authors the goal of their proposal is to allow more transparency and reproducible decisions when services for rehabilitation are being granted within the German system. They hope, that such a process contributes that “the results are not randomly dependent on which person is assessing the patient”. The fact, that body functions could also be understood as a personal factor is being addressed in their proposal by defining any normal body function as a personal factor. Such a procedure omits the situation, that some people with specific diagnoses might identify exactly with their body functions or structures that are different from the norm as they feel that those differences characterize them as a person and are part of their identity. Theoretically, this could lead to a classificatory dilemma were categories that are deviant from the norm would be coded both as personal factors and body functions. This runs against the required unambiguity necessary for any classification system.

An attempt to use personal factors in a practical setting was published by Geyh et al. They describe the psychological personal factors of patients with spinal cord injuries. This carefully developed study enriches the discussion about the practicability and utility of defining personal factors [27]. Different instruments of personality diagnostics, coping mechanisms and quality of life were used. Over 500 patients were surveyed regarding their feelings, thoughts, beliefs, coping processes and quality of life. The analysis according to different variants and groups showed, that the majority of patients presented a reduced negative affect and a moderate positive affect. The majority interpreted difficult life situations not as a loss or a threat, but as a positive challenge. In general, the patients were satisfied with their life situation and presented good social competencies and problem-solving abilities [27]. The study presents a positive overall situation of these study patients, possibly related to the quality of the treatment received. Both groups, Grotkamp et al. and Geyh et al., argue that the documentation of personal factors adds important additional information about the patients. While the methodology Grotkamp et al. to obtain consensus can be criticized (being too professional focused and not including a variety of patient perspectives) [4], Geyh et al. present an useful approach to the discussion by collecting actual patient data. The question arises though, if the categories and findings reported by Geyh et al. do in fact represent the relevant personal factors that patients would choose on their own to describe themselves and their life situation. How is it possible to conclude from results of a series of questionnaires that those answers describe “the specific life situation of each individual” and are “not part of their health problem”? Would the patients of the study make exactly those statements about their own coping abilities, their beliefs and feelings if they were asked to describe themselves as a person? Would they feel that these factors were important for the decisions about their treatments? And, would they agree that those factors are having an important influence on their participation?

The collected information in the questionnaires certainly is important and helpful. But it doesn’t make the case that we require the definition of single categories with codes to describe personal factors in order to obtain that type of information.

The risks of capturing personal factors

The collection and transmission of personal factors in order to decide about the access to health services results in several difficulties and risks. On the level of the ICF the creation of defined categories for personal factors would preclude the ability to separate them from other domains of functioning, as this is a personal decision. In addition, the coding of categories with qualifiers would lead to the creation of a scale of values of personal factors. The result would be that the ICF would be transformed from a classification of functional health towards a classification of persons, which explicitly is not the purpose of the ICF [13]. On the level of interpersonal relations the introduction of values (qualifiers) of personal factors can lead to undesired consequences. Any time when we establish a relationship with another person, we evaluate each other. This also happens within the physician-patient relationship. Each one creates a picture with values of each other. This evaluation modulates the interaction, but it is not explicitly expressed or documented and only will be mentioned if it is important for the therapeutic process. Even when such an exposure of personal aspects is necessary, it occurs within the protective space of the physician-patient relationship. When, on the other hand, personal aspects start to being coded, evaluated and transmitted in a patient chart (to justify decisions made about the access to care), this might have dangerous results. Besides leading to a potential discrimination of patients based on personal characteristics, patients might internalize such evaluations made within a power-relationship with addtional detrimental effects. 60 years ago, Bertram Forer demonstrated how easily so-called individualized assessments were accepted as true and valid by students that actually had all received the exact same wording as part of their personality assessment [28]. The systematic capturing of personal factors is therefore no guarantee for transparency and traceability. It can cause unintended harm and results in a higher risk of discrimination without adding value for public health.

Conclusion:

The ICF is an excellent tool to improve the understanding of health and disability. It can be used to develop functional profiles containing more meaningful information as it is possible to obtain from a list of diagnoses. Professionals need to be aware and get to know the personal factors of their patients to better understand their values, desires and goals. This is considered evidence-based practice.

Personal factors cannot be defined and coded for statistical purposes as the necessary categories do not correspond to the individual variations of how people define themselves. For statistical purposes, other instruments, tools and classifications can be used to complement some of the aspects not found in the ICF [13][6].

The collection and documentation of personal factors should be reserved to the personal interaction between the people that are part of the circle of care.

References:

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