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Using the common-sense model of self-regulation to explore the factors associated with intentional non-adherence to preventer medication for asthmaMain, Jodie Jane January 2007 (has links)
Daily use of inhaled preventer medication is recommended for most people with asthma. However, research suggests many do not adhere to this regime. The current thesis comprises two research studies utilising the common-sense model of self-regulation as the theoretical basis to explore how people make decisions about inhaled preventer use in asthma.
The purpose of Study One was to compare a self-report and an objective measure of adherence to preventer medication for asthma and to examine the illness representations and treatment beliefs associated with these measures. Accordingly, 1,936 U.K. General Practice patients who were using preventer medication for asthma completed a questionnaire assessing illness and medication perceptions and gave consent for information to be obtained from their medical records. Adherence to preventer medication was calculated from the Medication Adherence Report Scale (MARS) and an objective measure, the proportion of prescribed medication that the participant collected over the previous year. Results show that nearly nine out of ten participants (88.4%) reported some non-adherence to their preventer medication. The most common form of non-adherence was using preventer inhaler only when feeling breathless. The relationships between participants��� representations of their asthma and their beliefs about their preventer medication and adherence measures were tested using structural equation modelling. Seeing asthma as a condition that was not present when asymptomatic was associated with more non-adherence (��=.22 p<.001) and also with collecting a smaller proportion of prescribed preventer medication over the past year (��=-.15, p<.001). Seeing asthma as an acute condition, as a condition without serious consequences, and as a condition that could not be controlled by treatment were also representations associated with non-adherence. Those who did not see the need for preventer medication at all, or did not see the need for preventer medication when asymptomatic were more likely to be non-adherent. The relationship between illness representations and self-report adherence was mediated by the belief that medication was necessary.
Having identified a number of key beliefs that were associated with use of preventer medication in asthma, Study Two explored the way in which these beliefs may be developed through the process of appraisal of the influence of medication use on symptom experience. Using quantitative methods, 77 patients from a New Zealand General Practice completed a questionnaire measuring the reasons for experimenting and stopping medication, illness representations and treatment beliefs. Thirty percent of the sample reported actively experimenting with their medication. These participants were more likely to hold the belief that medication did not help in the absence of symptoms (Mann-Whitney U=343.5, p<.05) and to report trying to avoid thinking about asthma (Mann-Whitney U=330.5, p<.05). Fifty-one of the participants were subsequently interviewed about their experiences with using medication and transcripts of these interviews were subjected to a qualitative analysis. Participants��� responses suggested that the process of appraising whether medication is necessary was influenced by the match between what the participant expects to happen when using the medication and what actually does happen. The process of deciding when medication is necessary is influenced by the threshold at which medication is deemed to be necessary and the speed at which symptoms return if medication is stopped.
These findings have implications for the development of interventions to improve adherence to preventer medication for asthma. They suggest that a key component of self-management education is educating patients about the nature of asthma as a chronic condition that is present even in the absence of symptoms. Additionally, they provide evidence that many patients are involved in an active process of appraising the success of their medication. Health professionals should be aware of that this process is likely to be influenced by patients��� expectations of medication, the level of symptoms at which they believe action is required to control asthma and the speed at which symptoms return if medication is discontinued. Future research could take the form of a randomised controlled intervention to assess whether discussion of these factors with patients could improve quality of life for people with asthma. / Whole document restricted, but available by request, use the feedback form to request access.
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Using the common-sense model of self-regulation to explore the factors associated with intentional non-adherence to preventer medication for asthmaMain, Jodie Jane January 2007 (has links)
Daily use of inhaled preventer medication is recommended for most people with asthma. However, research suggests many do not adhere to this regime. The current thesis comprises two research studies utilising the common-sense model of self-regulation as the theoretical basis to explore how people make decisions about inhaled preventer use in asthma. The purpose of Study One was to compare a self-report and an objective measure of adherence to preventer medication for asthma and to examine the illness representations and treatment beliefs associated with these measures. Accordingly, 1,936 U.K. General Practice patients who were using preventer medication for asthma completed a questionnaire assessing illness and medication perceptions and gave consent for information to be obtained from their medical records. Adherence to preventer medication was calculated from the Medication Adherence Report Scale (MARS) and an objective measure, the proportion of prescribed medication that the participant collected over the previous year. Results show that nearly nine out of ten participants (88.4%) reported some non-adherence to their preventer medication. The most common form of non-adherence was using preventer inhaler only when feeling breathless. The relationships between participants’ representations of their asthma and their beliefs about their preventer medication and adherence measures were tested using structural equation modelling. Seeing asthma as a condition that was not present when asymptomatic was associated with more non-adherence (β=.22 p<.001) and also with collecting a smaller proportion of prescribed preventer medication over the past year (β=-.15, p<.001). Seeing asthma as an acute condition, as a condition without serious consequences, and as a condition that could not be controlled by treatment were also representations associated with non-adherence. Those who did not see the need for preventer medication at all, or did not see the need for preventer medication when asymptomatic were more likely to be non-adherent. The relationship between illness representations and self-report adherence was mediated by the belief that medication was necessary. Having identified a number of key beliefs that were associated with use of preventer medication in asthma, Study Two explored the way in which these beliefs may be developed through the process of appraisal of the influence of medication use on symptom experience. Using quantitative methods, 77 patients from a New Zealand General Practice completed a questionnaire measuring the reasons for experimenting and stopping medication, illness representations and treatment beliefs. Thirty percent of the sample reported actively experimenting with their medication. These participants were more likely to hold the belief that medication did not help in the absence of symptoms (Mann-Whitney U=343.5, p<.05) and to report trying to avoid thinking about asthma (Mann-Whitney U=330.5, p<.05). Fifty-one of the participants were subsequently interviewed about their experiences with using medication and transcripts of these interviews were subjected to a qualitative analysis. Participants’ responses suggested that the process of appraising whether medication is necessary was influenced by the match between what the participant expects to happen when using the medication and what actually does happen. The process of deciding when medication is necessary is influenced by the threshold at which medication is deemed to be necessary and the speed at which symptoms return if medication is stopped. These findings have implications for the development of interventions to improve adherence to preventer medication for asthma. They suggest that a key component of self-management education is educating patients about the nature of asthma as a chronic condition that is present even in the absence of symptoms. Additionally, they provide evidence that many patients are involved in an active process of appraising the success of their medication. Health professionals should be aware of that this process is likely to be influenced by patients’ expectations of medication, the level of symptoms at which they believe action is required to control asthma and the speed at which symptoms return if medication is discontinued. Future research could take the form of a randomised controlled intervention to assess whether discussion of these factors with patients could improve quality of life for people with asthma. / Whole document restricted, but available by request, use the feedback form to request access.
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Using the common-sense model of self-regulation to explore the factors associated with intentional non-adherence to preventer medication for asthmaMain, Jodie Jane January 2007 (has links)
Daily use of inhaled preventer medication is recommended for most people with asthma. However, research suggests many do not adhere to this regime. The current thesis comprises two research studies utilising the common-sense model of self-regulation as the theoretical basis to explore how people make decisions about inhaled preventer use in asthma. The purpose of Study One was to compare a self-report and an objective measure of adherence to preventer medication for asthma and to examine the illness representations and treatment beliefs associated with these measures. Accordingly, 1,936 U.K. General Practice patients who were using preventer medication for asthma completed a questionnaire assessing illness and medication perceptions and gave consent for information to be obtained from their medical records. Adherence to preventer medication was calculated from the Medication Adherence Report Scale (MARS) and an objective measure, the proportion of prescribed medication that the participant collected over the previous year. Results show that nearly nine out of ten participants (88.4%) reported some non-adherence to their preventer medication. The most common form of non-adherence was using preventer inhaler only when feeling breathless. The relationships between participants’ representations of their asthma and their beliefs about their preventer medication and adherence measures were tested using structural equation modelling. Seeing asthma as a condition that was not present when asymptomatic was associated with more non-adherence (β=.22 p<.001) and also with collecting a smaller proportion of prescribed preventer medication over the past year (β=-.15, p<.001). Seeing asthma as an acute condition, as a condition without serious consequences, and as a condition that could not be controlled by treatment were also representations associated with non-adherence. Those who did not see the need for preventer medication at all, or did not see the need for preventer medication when asymptomatic were more likely to be non-adherent. The relationship between illness representations and self-report adherence was mediated by the belief that medication was necessary. Having identified a number of key beliefs that were associated with use of preventer medication in asthma, Study Two explored the way in which these beliefs may be developed through the process of appraisal of the influence of medication use on symptom experience. Using quantitative methods, 77 patients from a New Zealand General Practice completed a questionnaire measuring the reasons for experimenting and stopping medication, illness representations and treatment beliefs. Thirty percent of the sample reported actively experimenting with their medication. These participants were more likely to hold the belief that medication did not help in the absence of symptoms (Mann-Whitney U=343.5, p<.05) and to report trying to avoid thinking about asthma (Mann-Whitney U=330.5, p<.05). Fifty-one of the participants were subsequently interviewed about their experiences with using medication and transcripts of these interviews were subjected to a qualitative analysis. Participants’ responses suggested that the process of appraising whether medication is necessary was influenced by the match between what the participant expects to happen when using the medication and what actually does happen. The process of deciding when medication is necessary is influenced by the threshold at which medication is deemed to be necessary and the speed at which symptoms return if medication is stopped. These findings have implications for the development of interventions to improve adherence to preventer medication for asthma. They suggest that a key component of self-management education is educating patients about the nature of asthma as a chronic condition that is present even in the absence of symptoms. Additionally, they provide evidence that many patients are involved in an active process of appraising the success of their medication. Health professionals should be aware of that this process is likely to be influenced by patients’ expectations of medication, the level of symptoms at which they believe action is required to control asthma and the speed at which symptoms return if medication is discontinued. Future research could take the form of a randomised controlled intervention to assess whether discussion of these factors with patients could improve quality of life for people with asthma. / Whole document restricted, but available by request, use the feedback form to request access.
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Using the common-sense model of self-regulation to explore the factors associated with intentional non-adherence to preventer medication for asthmaMain, Jodie Jane January 2007 (has links)
Daily use of inhaled preventer medication is recommended for most people with asthma. However, research suggests many do not adhere to this regime. The current thesis comprises two research studies utilising the common-sense model of self-regulation as the theoretical basis to explore how people make decisions about inhaled preventer use in asthma. The purpose of Study One was to compare a self-report and an objective measure of adherence to preventer medication for asthma and to examine the illness representations and treatment beliefs associated with these measures. Accordingly, 1,936 U.K. General Practice patients who were using preventer medication for asthma completed a questionnaire assessing illness and medication perceptions and gave consent for information to be obtained from their medical records. Adherence to preventer medication was calculated from the Medication Adherence Report Scale (MARS) and an objective measure, the proportion of prescribed medication that the participant collected over the previous year. Results show that nearly nine out of ten participants (88.4%) reported some non-adherence to their preventer medication. The most common form of non-adherence was using preventer inhaler only when feeling breathless. The relationships between participants’ representations of their asthma and their beliefs about their preventer medication and adherence measures were tested using structural equation modelling. Seeing asthma as a condition that was not present when asymptomatic was associated with more non-adherence (β=.22 p<.001) and also with collecting a smaller proportion of prescribed preventer medication over the past year (β=-.15, p<.001). Seeing asthma as an acute condition, as a condition without serious consequences, and as a condition that could not be controlled by treatment were also representations associated with non-adherence. Those who did not see the need for preventer medication at all, or did not see the need for preventer medication when asymptomatic were more likely to be non-adherent. The relationship between illness representations and self-report adherence was mediated by the belief that medication was necessary. Having identified a number of key beliefs that were associated with use of preventer medication in asthma, Study Two explored the way in which these beliefs may be developed through the process of appraisal of the influence of medication use on symptom experience. Using quantitative methods, 77 patients from a New Zealand General Practice completed a questionnaire measuring the reasons for experimenting and stopping medication, illness representations and treatment beliefs. Thirty percent of the sample reported actively experimenting with their medication. These participants were more likely to hold the belief that medication did not help in the absence of symptoms (Mann-Whitney U=343.5, p<.05) and to report trying to avoid thinking about asthma (Mann-Whitney U=330.5, p<.05). Fifty-one of the participants were subsequently interviewed about their experiences with using medication and transcripts of these interviews were subjected to a qualitative analysis. Participants’ responses suggested that the process of appraising whether medication is necessary was influenced by the match between what the participant expects to happen when using the medication and what actually does happen. The process of deciding when medication is necessary is influenced by the threshold at which medication is deemed to be necessary and the speed at which symptoms return if medication is stopped. These findings have implications for the development of interventions to improve adherence to preventer medication for asthma. They suggest that a key component of self-management education is educating patients about the nature of asthma as a chronic condition that is present even in the absence of symptoms. Additionally, they provide evidence that many patients are involved in an active process of appraising the success of their medication. Health professionals should be aware of that this process is likely to be influenced by patients’ expectations of medication, the level of symptoms at which they believe action is required to control asthma and the speed at which symptoms return if medication is discontinued. Future research could take the form of a randomised controlled intervention to assess whether discussion of these factors with patients could improve quality of life for people with asthma. / Whole document restricted, but available by request, use the feedback form to request access.
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Using the common-sense model of self-regulation to explore the factors associated with intentional non-adherence to preventer medication for asthmaMain, Jodie Jane January 2007 (has links)
Daily use of inhaled preventer medication is recommended for most people with asthma. However, research suggests many do not adhere to this regime. The current thesis comprises two research studies utilising the common-sense model of self-regulation as the theoretical basis to explore how people make decisions about inhaled preventer use in asthma. The purpose of Study One was to compare a self-report and an objective measure of adherence to preventer medication for asthma and to examine the illness representations and treatment beliefs associated with these measures. Accordingly, 1,936 U.K. General Practice patients who were using preventer medication for asthma completed a questionnaire assessing illness and medication perceptions and gave consent for information to be obtained from their medical records. Adherence to preventer medication was calculated from the Medication Adherence Report Scale (MARS) and an objective measure, the proportion of prescribed medication that the participant collected over the previous year. Results show that nearly nine out of ten participants (88.4%) reported some non-adherence to their preventer medication. The most common form of non-adherence was using preventer inhaler only when feeling breathless. The relationships between participants’ representations of their asthma and their beliefs about their preventer medication and adherence measures were tested using structural equation modelling. Seeing asthma as a condition that was not present when asymptomatic was associated with more non-adherence (β=.22 p<.001) and also with collecting a smaller proportion of prescribed preventer medication over the past year (β=-.15, p<.001). Seeing asthma as an acute condition, as a condition without serious consequences, and as a condition that could not be controlled by treatment were also representations associated with non-adherence. Those who did not see the need for preventer medication at all, or did not see the need for preventer medication when asymptomatic were more likely to be non-adherent. The relationship between illness representations and self-report adherence was mediated by the belief that medication was necessary. Having identified a number of key beliefs that were associated with use of preventer medication in asthma, Study Two explored the way in which these beliefs may be developed through the process of appraisal of the influence of medication use on symptom experience. Using quantitative methods, 77 patients from a New Zealand General Practice completed a questionnaire measuring the reasons for experimenting and stopping medication, illness representations and treatment beliefs. Thirty percent of the sample reported actively experimenting with their medication. These participants were more likely to hold the belief that medication did not help in the absence of symptoms (Mann-Whitney U=343.5, p<.05) and to report trying to avoid thinking about asthma (Mann-Whitney U=330.5, p<.05). Fifty-one of the participants were subsequently interviewed about their experiences with using medication and transcripts of these interviews were subjected to a qualitative analysis. Participants’ responses suggested that the process of appraising whether medication is necessary was influenced by the match between what the participant expects to happen when using the medication and what actually does happen. The process of deciding when medication is necessary is influenced by the threshold at which medication is deemed to be necessary and the speed at which symptoms return if medication is stopped. These findings have implications for the development of interventions to improve adherence to preventer medication for asthma. They suggest that a key component of self-management education is educating patients about the nature of asthma as a chronic condition that is present even in the absence of symptoms. Additionally, they provide evidence that many patients are involved in an active process of appraising the success of their medication. Health professionals should be aware of that this process is likely to be influenced by patients’ expectations of medication, the level of symptoms at which they believe action is required to control asthma and the speed at which symptoms return if medication is discontinued. Future research could take the form of a randomised controlled intervention to assess whether discussion of these factors with patients could improve quality of life for people with asthma. / Whole document restricted, but available by request, use the feedback form to request access.
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第二型糖尿病患者的反思及反芻特質與疾病表徵對自我照護行為的影響 / Illness representations, reflection and rumination as predictors of self-care behaviours in patients with type II diabetes張瓊文, Chang, Chung Wen Unknown Date (has links)
研究目的:本研究使用共通信念模式,以瞭解第二型糖尿病患者持有的疾病表徵對自我照護行為的預測關係。過去的研究顯示,糖尿病患者的「控制」表徵能夠有效預測患者的自我照護行為和糖化血色素值;也就是,患者相信疾病能被控制的程度愈高,在自我照護行為的表現愈好,糖化血色素值愈低。但是,「結果」表徵與「情緒」表徵無法顯著一致的預測患者的自我照護行為。透過回顧與健康行為相關的理論發展與文獻,考量慢性疾病的自我調節歷程中,除了疾病表徵以外,還需要納入與自我意識有關的人格特質。為此,本研究目的有四:(1)先檢驗在台灣糖尿病患者的疾病表徵建構,是否與國外使用疾病共通信念模式的研究結果一致,有相同的因素結構。(2)檢定台灣第二型糖尿病患者,其持有的疾病表徵對自我照護行為與血糖控制的預測,是否與Harvey和Lawson(2009)的研究結果一致。(3)評估糖尿病患者的人格特質對自我照護行為與糖化血色素值的影響。(4)探索第二型糖尿病患者反芻反思特質,在疾病表徵影響自我照護行為上的調節效果。
研究方法:本研究以立意取樣的方式,邀請新竹某教學醫院門診的第二型糖尿病患者為受試。排除漏答與亂填者,共有142位符合資格的受試者;每位受試者皆需完成受試者同意書、背景資料、糖尿病自我照護量表、疾病表徵問卷與中文版反芻反思量表。根據研究目的,以階層回歸和羅吉斯回歸分析等統計方法進行假設考驗。
研究結果:(1)臺灣第二型糖尿病患者的疾病表徵結構與國外患者相似,共包含:「認同」、「病因」、「時間感急慢性」、「時間感循環性」、「結果」、「情緒」和「控制」表徵。(2)研究結果與Harvey和Lawson(2009)的研究結果一致,「控制」表徵可以顯著預測整體自我照護行為和糖化血色素值。(3)第二型糖尿病患者的反芻反思特質,無法單獨預測自我照護行為與糖化血色素值。(4) 第二型糖尿病患者的反芻反思特質會與病表徵產生交互作用,共同調節各種自我照護行為的表現。
結論:本研究資料與其他使用共通信念模式的研究資料一致,亦即控制表徵能預測自我照護行為和糖化血色素值。此外,本研究發現,不同自我照護行為會受到疾病表徵與反芻或反思特質的交互作用而影響。由於,增加自我照護行為的執行度,是目前糖尿病治療與衛教的首要目標。建議未來從事糖尿病照護的實務工作者,能提供疾病表徵與反芻反思特質的專業心理評估;以協助建立個別評估與個別介入的個別化治療方案,進而提高患者在自我照護行為的執行度、增加臨床治療的效果。 / Background and Aims.
It is increasingly being used to understand and predict individuals' coping with and subsequent self-care of chronic illness is Leventhal and colleagues' the common sense model. This model postulates that it is the individual's illness representation is the proximal determinant of coping behavior. The role of personality in determining self-care behavior has been relatively ignored, possibly because of the lack of convergence in concepts and measures.
Due to the lack of research in the area of interest, the present study attempt to resolve this issue. We investigated, (a) using subjects of Type-II diabetes in Taiwan, are the results of present study similar as others studies directed by common sense model to identify the factors of illness representation, (b) discussing the influences of illness representation to self-care behavior and glycemic control (HbA1c); like as Harvey and Lawson(2009)’s study, (c) assessing whether traits of normal personality are associated with variations in self-care behavior and glycemic control in patients with type 2 diabetes, (d) examining whether personality moderate the relationships between illness representations and self-care behavior.
Methods.
Patients were eligible if they had Type 2 diabetes, were aged 20 years or more at diagnosis. Before we collect data, a physician will invite patient to enter the study. Patient want to join this study, they be giving an informed consent and be asked to complete four questionnaires. A total 142 patients completed the demographic survey ( age, educational level, diabetes duration et al.), Diabetes Self-Care Scale, the Revised Illness Perception Questionnaire(IPQ-R), the Chinese version of Rumination- Reflection Questionnaire. Analysis were concluded using multiple regression analysis, logistic regression and so on.
Results.
The results revealed that: (1) as our hypothesis, the structures of the IPQ-R in type 2 diabetes in Taiwan were similar as other foreign studies directed by common sense model. (2) Control representation can induce main effect on self care behavior. Higher control representation was significantly positive associated with self care behavior, and it was significantly negative associated with HbA1c. (3) Self reflection and self rumination were inconsistently associated with self care behavior and HbA1c. (4) Personality moderated the relationships between illness representations and self-care behavior.
Conclusions.
This study supports the Common Sense Model (CSM) of illness representation when considering type 2 diabetes in Taiwan. Based on our results, we found personality traits may offer new insights in to variations in self-care in patients with type 2 diabetes undergoing standard management. Personality refers as self-reflection and self-rumination which moderated the relationships between illness representations and self-care behavior. Therefore, CSM could become the theoretical framework for psychological interventions in type 2 diabetes. Furthermore, according to the study result, we suggested the practitioners paying attention to the different interaction when representation and personality are together in diabetes’ each self-care behavior.
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Identification des facteurs sociocognitifs liés à l’adhésion au traitement des jeunes atteints d’hémophilie : une étude pour guider l’intervention en milieu hospitalierBérubé, Sarah 08 1900 (has links)
L’hémophilie est une maladie héréditaire incurable qui ralentit la coagulation sanguine. Le plan de traitement vise à prévenir les saignements pouvant se produire dans les articulations, puisque ceux-ci peuvent causer des dommages à long terme dans les structures internes. Le traitement consiste en l’administration régulière et continue d’injections de concentré de facteur de coagulation. Le plan de traitement inclut aussi des indications sur les activités physiques sécuritaires et celles à éviter pour les patients atteints de la maladie. Peu de recherches psychosociales ont été conduites en hémophilie à ce jour. L’objectif de cette thèse, composée de 5 articles, était de déterminer les facteurs sociocognitifs susceptibles d’influencer l’adhésion aux recommandations chez les enfants et les adolescents atteints d’hémophilie et de proposer des pistes d’intervention. Pour ce faire, nous nous sommes appuyés sur trois modèles théoriques qui apportent, en complémentarité, un éclairage sur des aspects centraux de l’adhésion. Dans le premier article, nous avons traduit en français un instrument de mesure de l’adhésion au traitement par injection et nous avons fourni les données psychométriques préliminaires de l’instrument. Les données ont appuyé son utilisation auprès des jeunes patients, ce qui nous a permis de l’utiliser dans la thèse. Dans le deuxième article, nous avons utilisé la théorie du comportement planifié pour comprendre comment les jeunes se positionnent face aux recommandations de l’équipe médicale en ce qui a trait au traitement par injection et à l’activité physique. Pour cela, nous avons mesuré leur attitude, leur perception de contrôle comportemental, la norme sociale subjective et le comportement passé. Nous avons évalué si ces facteurs étaient liés à l’intention de suivre les recommandations. Les résultats ont indiqué que ces facteurs expliquaient une grande proportion de la variance de l’intention de suivre les recommandations sur l’activité physique, surtout pour celles dites « à risque ». Ayant constaté une bonne adhésion au traitement par injection chez les participants et une adhésion plus faible en ce qui a trait à l’activité physique, nous avons décidé de nous concentrer sur l’activité physique pour la suite. Dans le troisième article, nous avons utilisé le modèle du sens commun pour comprendre comment les patients se représentent leur maladie et si ces représentations pouvaient avoir un impact sur leur pratique d’activé physique. Les perceptions étaient plus négatives pour les domaines suivants : les conséquences de la maladie, le nombre de symptômes et l’impact émotionnel. Lorsque nous avons classé les participants selon leur profil d’activité physique, le sous-groupe « adhésion faible », c’est-à-dire celui qui suivait moins et avait moins l’intention de suivre les recommandations, avait significativement plus de préoccupations par rapport à la maladie et percevait plus de symptômes en moyenne. Le quatrième article souligne l’intérêt du modèle du soutien à l’autonomie de la théorie de l’autodétermination dans l’intervention en hémophilie et consiste en une adaptation pratique de ce modèle aux enjeux spécifiques de la maladie. Le cinquième article porte sur un livret d’information que nous avons développé utilisant la théorie de l’autodétermination. Nous avons utilisé des méthodes quantitatives et qualitatives pour évaluer la réception du livret chez les parents et pour apporter des modifications à celui-ci. / Hemophilia is an incurable bleeding disorder that slows the blood clotting process. The treatment plan aims to prevent bleeding episodes that occur in the joints, since repeated bleeding episodes can cause long-term damage to internal structures. The treatment plan consists of regular infusions of the missing clotting factor and specific recommendations as to which physical activities are safe and which are to be avoided.
The objective of this thesis, composed of 5 articles, was to determine the socio-cognitive factors likely to influence the adherence of children and adolescents to the recommendations of the treatment plan, and to suggest avenues for intervention. To do this, we relied on three theoretical models which, together, shed light on the central aspects of adherence: the perspective of young patients on the medical recommendations, their perceptions of the illness and, finally, avenues of intervention to promote better adherence in those young patients in the long-term.
In the first article, we translated to French an instrument that measured adherence to the infusion therapy, and we provided the preliminary psychometric data of the instrument. The data supported the use of the instrument with young patients, which allowed us to use it in the thesis.
In the second article, we used the theory of planned behavior to understand how young people perceive the recommendations concerning infusion treatment and physical activity. For this, we measured their attitude towards the behavior, their perception of behavioral control, the subjective social norm and past behavior. We assessed whether these factors were related to the intention to follow the recommendations. The results indicated that these factors explain a large proportion of the variance in intention to follow physical activity recommendations, especially for those at risk of causing bleeding. As adherence to injection therapy was high in our sample while adherence to physical activity recommendations was lower and more variable among participants, we decided to focus on the latter for the next articles.
In the third article, we wanted to understand how patients view their illness and whether illness perceptions could have an impact on their physical activity practice. For this we used the common-sense model. Perceptions were more negative for the following areas: the consequences of hemophilia, the number of symptoms and the emotional impact. When we ranked participants according to their physical activity profile, the subgroup that followed the recommendations less
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closely and had a lower intention of following the recommendations had significantly more concerns and perceived more symptoms.
The fourth article highlights the interest of the autonomy support model in hemophilia intervention and consists of a practical adaptation of this model to the specific challenges of the illness.
The fifth article is about the development of an information booklet that we created using the concepts of this theory. We used quantitative and qualitative methods to assess the parents’ acceptability of the booklet and modified the booklet according to their suggestions.
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