Motivation and emotion/Book/2015/Cystic fibrosis treatment motivation

Overview
This chapter explores motivational theories and techniques which could be applied to assist people maintain higher levels of motivation for daily treatment specifically for cystic fibrosis. Firstly, an overview of cystic fibrosis is presented, including what it is, what treatment methods are applied, and motivational issues that may arise. A number of theories will be identified which may have a positive or negative impact on someone with cystic fibrosis struggling to maintain motivation levels for treatment. These theories include self-determination theory and cognitive evaluation theory, and the theory of learned helplessness. An overview of the theories is provided with examples of how the theories may be or have been applied to motivation for treatment in cystic fibrosis.

Cystic fibrosis


Cystic Fibrosis is a genetic condition that effects the digestive, respiratory, and reproductive systems (Cystic Fibrosis Australia, 2015; Cystic Fibrosis Queensland, 2015). The condition is brought on due to a mutation in the Cystic Fibrosis Trans-membrane Regulator (CFTR), the purpose of which is to help the regulated transportation of sodium between cells (Ong & Ramsey, 2015). This causes the mucus layer throughout the body to become thick and sticky in consistency, preventing adequate mucus clearance specifically from the lungs (Davis, 2006). Without the proper clearance the mucus provides harmful pathogens and bacteria with an excellent breeding ground, resulting in a predisposition for people with cystic fibrosis to suffer frequent and serious lung infections (Davis, 2006). In addition, due to this inadequate clearance, cystic fibrosis patients will constantly have a productive cough and varying degrees of difficulty in breathing. The mucus layer also prevents the transportation of enzymes produced by the pancreas entering the digestive tract, resulting in poor nutritional absorption (Davis, 2006).

There is no cure for cystic fibrosis; thus, patients require daily treatment of symptoms (Cystic Fibrosis Australia, 2015; Bingham & Meyer, Self determination and health behaviours in children with cystic fibrosis, 2011). Assisted methods of airway clearance are needed, and these can include physiotherapy, inhaled medications, steroids and anti-inflammatory medication (Davis, 2006; Cystic Fibrosis Australia, 2015). These treatments are increased when the patient is hospitalised due to infection.

Cystic fibrosis is generally known to be a children’s disease, and thus a key focus is on helping the parents/guardians effectively maintain treatment plans and dealing with motivational obstacles. However, as treatments improve, more and more people are reaching adulthood and as such begin taking the burden of treatment and maintaining motivation to continue on themselves (Cystic Fibrosis Australia, 2015). The theories presented can have an impact on someone with cystic fibrosis at any stage of their life but may be more directly applicable for the person monitoring treatment compliance.

Learned Helplessness Theory


When looking at negative effects on someone’s ability to maintain motivation, one theory that is often suggested is the theory of learned helplessness (Seligman, 1975, 1991; Maier & Seligman, 1976). Identified by Seligman (1975) in animals and later in humans, the theory depicts if someone is exposed to a negative or harmful event without the ability to control or escape it, they risk developing a mental barrier preventing them from doing anything to remove themselves from another similar negative or harmful situation in the future (Reeve, Learned Helplessness, 2015).

Seligman (1975) tested this theory on dogs, some were trapped in a room and a mild electric shock was administered, while others had the same shock but they could easily escape the room. The next time the dogs that had previously been placed in an inescapable room were placed in an escapable room. Seligman (1975) found that when the electric shock was applied to the dogs which could not escape in the first trial, would not try to escape the shock even though all that was needed to be done was leave the room, and rather the dogs cowered in the corner and suffered through the experience.

In short, the three steps to learned helplessness are:
 * 1) Uncontrollable negative event
 * 2) Perceived lack of control
 * 3) Learned helplessness

Applying Theory of Learned Helplessness to Cystic Fibrosis
Learned helplessness is a possible negative motivator for people with cystic fibrosis when we apply the theory over time as the child grows. As cystic fibrosis is a genetic condition, a person is born with it and they have no possible way of controlling this. In terms of the theory, one can attribute having cystic fibrosis as the uncontrollable negative event. What constitutes the perceived lack of control is the absence of a cure; through no amount of treatment will cystic fibrosis permanently go away. Consequently, someone with cystic fibrosis may develop a sense of helplessness, and they may question if there is a point to continuing treatment procedures as there is nothing they can do to permanently solve the issue. This example shows how the idea of learned helplessness may have a significant impact on the motivation levels of someone with cystic fibrosis and continued treatment. No studies were found investigating such an occurrence, however this hypothetical example may pose a testable hypothesis for future research.

Self-Determination Theory
A more positive look at motivation can be found with self-determination theory developed by Ryan & Deci in 1985 (Ryan & Deci, Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being., 2000). The theory is based on the presence of psychological needs which create the foundation of self-motivation, personal growth and well-being (Ryan & Deci, Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being., 2000; Self Determination Theory Organisation, 2015). Ryan and Deci (2000) identified 3 key psychological needs that when satisfied an individual will have a natural progression towards higher motivation, greater growth and a positive well-being. Ryan & Deci developed a number of different sub-theories (which now all fall under the single heading of self-determination theory) to explain different types of motivation which in turn served to fulfill psychological needs (Reeve, Psychological Needs, 2015; Self Determination Theory Organisation, 2015).
 * 1) Competence – which is defined under the theory to be ones internal drive to be efficient and effective in ability and skill when interacting with the surrounding environment (Reeve, Psychological Needs, 2015).
 * 2) Relatedness – Refers to a person’s drive to develop and experience a deep emotional connection with another that reflects a mutually caring, supportive environment (Reeve, Psychological Needs, 2015).
 * 3) Autonomy – Is the feeling of personal endorsement to a behaviour or activity in which one is engaged in and that the behaviour is initiated through the person’s freedom to choose to engage in the behaviour (Reeve, Psychological Needs, 2015).

Cognitive Evaluation Theory
The key focus of Cognitive Evaluation Theory (Deci, Cascio, & Krusell, 1975), is to address the positive or negative impacts to intrinsic motivation social and environmental factors cause (Reeve, Psychological Needs, 2015). According to the theory any social or environmental event will either exhibit a controlling aspect or an informative aspect which will have an impact on a person’s need of autonomy or competence respectively (Deci, Cascio, & Krusell, 1975) (Reeve, Extrinsic Motivation, 2015).

Applying Cognitive Evaluation Theory to Cystic Fibrosis
Currently there are no available studies on the individual application of cognitive evaluation theory being utilized as a method to increase motivation for the treatment of cystic fibrosis or any other chronic illness. However, through assessment of studies utilizing self-determination theory, evidence suggests that the cognitive evaluation theory may have an effect on maintaining motivational levels.

The theory states that if an external event promotes competence in an informative way the likelihood that the subject of the external event will satisfy the need of competence and thus increase intrinsic motivation (Reeve, Extrinsic Motivation, 2015; Ryan & Deci, Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being., 2000). The use of the controlling aspect of the cognitive evaluation theory may be somewhat less applicable for a number of reasons.

Firstly, to promote autonomy, one must feel that they have the ability to choose or have some say in what it is they are doing. It can be argued that they do have a choice: they either do the treatment, or they do not. However, according to the cognitive evaluation theory this does not constitute a true freedom of choice (Reeve, Extrinsic Motivation, 2015; Deci, Cascio, & Krusell, 1975; Ryan & Deci, Self-determination theory and the facilitation of intrinsic motication, social development, and well-being., 2000). This situation in turn decreases the probability of satisfying the need of autonomy by creating a ‘this or that’ scenario which in turn decreases intrinsic motivation.

Secondly, when one applies the control aspect of the theory, a common occurrence is the use of rewards to promote the desired behaviour, in this case the completion of the treatment. However offering of rewards, shifts what is called the perceived locus of causality towards an external source (the reward). Similarly to the previous example this effect creates a ‘if I do this (treatment) – I get that (reward)' this then creates an increase of extrinsic motivation often resulting in the person only doing the behaviour if the reward is present (Reeve, Extrinsic Motivation, 2015; Ryan & Deci, Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being., 2000; Deci, Cascio, & Krusell, 1975).

Self-determination continuum
While cognitive evaluation theory focuses on intrinsic motivational factors, which relate to satisfying the 3 psychological needs, it sits on the far on the ‘self-determined’ end of what Ryan & Deci deemed the self-determination continuum (Ryan & Deci, Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being., 2000). The middle section of this continuum as displayed in Figure 1 shows extrinsic motivation and its four subcategories. Each category increases the amount of autonomy as one moves from the non-self-determined end towards the self-determined end (Ryan & Deci, Self-determination theory and the facilitation of intrinsic motication, social development, and well-being., 2000).


 * External Regulation – Is the least autonomous category where behaviours are completely controlled by external motivation sources such as the utilisation of rewards or punishments to maintain compliance (Ryan & Deci, Self-determination theory and the facilitation of intrinsic motication, social development, and well-being., 2000).
 * Introjected Regulation – is similar to the previous, however now rewards and punishment tends to be internally placed. Therefore one would perform the task to avoid negative feelings such as guilt or anxiety or gain feelings of pride or joy (Ryan & Deci, Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being., 2000).
 * Identified Regulation – is the first category that an action stems from an internal motive. In this category an individual has developed an internal value for carrying out a behaviour and is accepted (Ryan & Deci, Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being., 2000).
 * Integrated Regulation – is the final category of extrinsic motivation and represents that someone has fully accepted the values and purpose of a behaviour and is willing to perform it (Ryan & Deci, Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being., 2000). However although motivation stems from an internal origin, integrated regulation is different form intrinsic motivation because behaviour is done to attain separable outcomes rather than to achieve joy (Ryan & Deci, Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being., 2000).

The final category is amotivation. It resides on the nonself-determined end of the continuum and consists of four elements that affect whether someone experiences it: the individual’s perception of low ability, low effort, low value, and low interest (Reeve, Extrinsic Motivation, 2015). Due to these factors, the motivation experienced in this category is virtually non-existent and often predicts poor individual functioning (Reeve, Extrinsic Motivation, 2015).

Self-Determination theory – Applied study on Cystic Fibrosis Treatment
When addressing treatment for cystic fibrosis in terms of the self-determination theory a study by Bingham & Meyer (2011) identified that the factors that contributed to motivation the most were autonomy and relatedness. Bingham & Meyer (2011) had participants aged between 8-16 years answer a self-determination questionnaire with questions targeting their sense of autonomy, competence, and relatedness in terms of daily cystic fibrosis treatment. Activity engagement in sports and digital media, possible adherence barriers, and general attitude to treatment was also investigated (Bingham & Meyer, 2011). They hypothesised that participants would have less self-determination with treatment behaviours when compared to other behaviours.

In terms of competency, the participants were asked to rate their treatment performance between 1 (poor) and 10 (great), 88% responded with a ranking of 7 or more (Bingham & Meyer, 2011). In terms of maintaining high levels of motivation these results indicate that competence is not a particularly important factor.

Autonomy scores showed a high congruence with external regulation, with many participants reporting treatments as something they ‘had to do’ or ‘had no choice’ attributing the main reasons they did treatments was due to parents or doctors telling them to (Bingham & Meyer, 2011). In addition participants often indicated levels of resistance or passivity towards their treatments and that the most applicable motivation enhancer was either of reward or punishment (Bingham & Meyer, 2011). These responses further support the level of extrinsic motivation falling under external regulation and having little too no internal motive. However other reporting measures showed signs that treatment motivation was not solely situated in the category of external regulation. Responses on some items indicated that participants showed levels of acceptance towards the treatment and reasoning behind doing them (Bingham & Meyer, Self determination and helath behaviours in children with cystic fibrosis, 2011). Which is more fitted towards the internal regulation category indicated above. With other responses showing little to no feelings of guilt from not doing treatments and little feeling of pressure to perform them (Bingham & Meyer, Self determination and health behaviours in children with cystic fibrosis, 2011), which if following the continuum one would expect at least some level of these introjected regulative behaviours being present.

Responses in terms of relatedness showed that most participants identified with feelings of social isolation caused by the amount of time their treatments took up during the day (Bingham & Meyer, 2011). Although participants noted being able to spend time with friends, none identified as having other friends with cystic fibrosis, many referring to rules about contact with other cystic fibrosis patients due to contagion risk (Bingham & Meyer, 2011). This highlighted a negative impact on participants## Avoid directional referencing (e.g., above, below, as previously mentioned). need for relatedness from peers and it was also a presented issue for relatedness with parents, often resulting in conflict (Bingham & Meyer, 2011).

When the three needs were assessed in terms of other activities participants showed high levels of competency, autonomy represented by their freedom to choose different activities to engage in, and relatedness with the ability to relate to other non-cystic fibrosis friends in these activities (Bingham & Meyer, 2011). In terms of comparison between treatment and other activities, motivational differences are evident in Bingham & Meyers (2011) study. In order to improve patient’s levels of self-determined motivation they suggested the development of a video game in order to increase intrinsic interest for completing treatment, as many of the participants reported in partaking in video games whilst doing their treatments already (Bingham & Meyer, Self determination and health behaviours in children with cystic fibrosis, 2011).

A second study addressed psychosocial aspects of cystic fibrosis patients, specifically, as they transitioned between paediatric and adult health care (Brumfield & Lansbury, 2004). Through the use of detailed interviews, the study reviewed how the participants felt in regards to social contact with other people with cystic fibrosis (Brumfield & Lansbury, 2004). Brumfield & Lansbury (2004) found that many participants attended camps run by the Cystic Fibrosis Foundation and through these experiences developed meaningful friendships with other people with cystic fibrosis. Participants reported that attending these camps helped them relate, cope with stressors, and feel happier knowing they are not alone (Brumfield & Lansbury, 2004). A number of participants were affected when the Cystic Fibrosis Foundation stopped running the camps due to risk of cross-contamination (Brumfield & Lansbury, 2004), with some mentioning how they missed attending the camps and felt more isolated without them. Another participant who did not attend any of the camps stated how she would often miss out on any social event due to cystic fibrosis. The responses from the participants of this study display how important meeting the need of relatedness is when attempting to maintain positivity and motivation.

Another study investigated opinions regarding chest physiotherapy from both patients with cystic fibrosis and their parents (Williams, Mukhopadhyay, Dowell, & Cyle, 2007). Interviews were conducted with 32 children with cystic fibrosis and 31 parents with a number of items addressing attitude towards treatments, experiences with the treatments and possible factors that prevented treatment compliance (Williams, Mukhopadhyay, Dowell, & Cyle, 2007). Interview responses identified a number areas in which can be linked to represent a negative effect on psychological needs or fall under different categories of extrinsic motivation or even amotivation (Williams, Mukhopadhyay, Dowell, & Cyle, 2007). For example, a number of children indicated they often felt upset by restrictions on their ability to spend time with friends due to treatment schedules, which, as indicated by the responses of parents, did cause friction and difficulty when they tried to motivate their children to do their treatment. One could associate these restrictions with a lack of relatedness to peers, which would support the motivational difficulty observed by the parents. Another example is the boredom experienced during physical percussion, either self-applied our when applied by their parents with a number of children admitting to missing treatment sessions because of it (Williams, Mukhopadhyay, Dowell, & Cyle, 2007). This boredom experienced then leads to the maladaptive behaviour of non-adherence, which could be linked to the amotivation category as shown in the continuum. A final example from the study highlighted the perceived effectiveness and benefit felt by participants after the physical percussion treatment (Williams, Mukhopadhyay, Dowell, & Cyle, 2007). Results varied as some children did not understand the significance of performing the treatment and felt no noticeable difference in their health before or after the treatment (Williams, Mukhopadhyay, Dowell, & Cyle, 2007). Whereas others indicated that they knew it was good for them to do the treatment and although they may not have felt any difference in their health still believed they should do it for that perceived long term benefit (Williams, Mukhopadhyay, Dowell, & Cyle, 2007). This example shows the perception of the treatment in some cases reflecting that of identified regulation, with some level of internal acceptance for why the behaviour should be done.

Self-determination theory has been applied in studies to a number of other chronic illnesses including diabetes, mental disorders like depression, weight, and dietary issues (Self Determination Theory Organisation, 2015; Williams, et al., 2009; Rubak, Sandaek, Lauritzen, Borch-Johnsen, & Christensen, 2009; Austin, Senécal, Guay, & Nouwen, 2011).

Many of these studies found similar results to those focusing on cystic fibrosis specifically studies on diabetes. When considering the similarities in required treatment frequency one may predict that the application methods would be applicable to patients with cystic fibrosis also.

Motivation techniques
Reeve (Extrinsic Motivation, 2015) mentions two motivational techniques that have been shown to improve someone's motivation towards a task specifically when it is uninteresting to the person. The first is explanatory rationale when applied is designed to increase the feelings identified regulation by promoting ideas of why the activity is important and should be valued (Reeve, Extrinsic Motivation, 2015). When utilizing this motivation method of why someone should find a task important the utilizer should focus on the perspective of the person they are trying to motivate and attempt to proivde new information (Reeve, Extrinsic Motivation, 2015). A study by Rubak, Sandaek, Lauritzen, Borch-Johnsen, & Christensen, (2009) demonstrated the effectiveness of this approach in their study on diabetes, finding significant effects presented by those of whom underwent motivational interviews compared to those who did not. As mentioned above due to the similarities in treatment requirements, one can predict a similar level of effectiveness to patients with cystic fibrosis.

The second technique is called interest-enhancing strategies, in which the motivator applies additional tasks, or activities in conjunction with the uninteresting task (Reeve, Extrinsic Motivation, 2015). Such additions may include goals, competition, applying a fantasy context towards the activity, the idea is to shift attention from the uninteresting task and incorporate the enjoyment of the other task to that of the unintersting one increasing motivation (Reeve, Extrinsic Motivation, 2015). Examples of such an approach have been used in a number of studies: Bingham, Bates, Thompson-Figueroa, & Lahiri, (2010) found that when they introduced a videogame element to treatment that it helped their participants more actively track their performance during treatment which was further supported by another study by Bingham, Lahiri, & Ashikaga,(2012).

Conclusion
Motivation for treatment behaviour is a key issue faced by those who have cystic fibrosis which also affects those around them, such as parents and medical professionals. The first theory addressed was that of learned helplessness and how such a mindset can negatively affect the treatment motivation of a person. Secondly, the theory of self-determination was viewed in conjunction with the sub-theory cognitive evaluation theory and the self-determination continuum. In that section analysis of how different study results can be addressed under the self-determination theory and the resulting issues that the different levels of extrinsic and intrinsic motivation has on the treatment motivation of a person with cystic fibrosis. Finally, different techniques that may be used in order to improve the motivation of someone with cystic fibrosis were explored.

Maintaining motivation to actively do the required treatments, and also to do them effectively, is important for the health of those with cystic fibrosis. Further research is needed about motivation and cystic fibrosis; the utilization of methods used in other chronic illnesses is a logical starting point, however, other areas could also be explored conjunction with these motivational approaches. Research should address the mental health of these participants in addition and separately to motivational tendencies in order to address cognitive blocks in terms of attaining and maintaining motivation when dealing with serious chronic illnesses.