Drawing Asthma: An Exploration of Patients' Illness Perceptions, Healthcare Professionals' Perspectives and University Educators' Feedback

Abstract

Background Asthma is a common and potentially fatal respiratory condition. Despite increasingly effective pharmacological treatments for asthma, people living with this condition continue to experience substantial physical and psychosocial consequences. As asthma is a chronic condition, patients can experience symptoms for extended periods of time and much of the management needs to be carried out by the patient themselves. Treatment guidelines view engaging patients in self-initiated, active efforts to respond to their asthma as an important task in healthcare practice to enable patients to optimally manage their condition. Research has demonstrated that patients’ knowledge, attitudes and beliefs can impact behaviours and health outcomes. Compared to the voluminous literature covering clinical aspects of asthma, research exploring patients’ perspectives of the condition and healthcare professionals’ perceptions of patient experiences is minimal. Greater understanding of the patient perspective can help improve communication between patients and healthcare professionals, and direct patient-centred health interventions. A validated theoretical framework which enables an understanding of factors that may influence patient interpretations and responses to their illness is the Common-Sense Model of Self-Regulation. The model proposes that an individual’s response is based on their cognitive and emotional representations, referred to as illness perceptions. Scales such as the Brief Illness Perception Questionnaire have been developed from this framework and are commonly utilised for measuring illness perceptions. Scales are derived quantitative measures; because of the confinement of responses, they cannot portray the intricate Complexities of thoughts and feelings that people living with a chronic condition such as asthma experience on a daily basis. Capturing the lived experience and perceptions of illness through creative expression is a strategy that has been utilised. Building on such work, the novel approach to understanding illness perceptions in this doctoral work was to utilise patient-generated drawings as vehicles for exploring and communicating patients’ views. Research has demonstrated that adults’ drawings have revealed promising and intriguing findings in a range of health conditions, although there is yet to be literature focusing on adults’ drawings of asthma. Additional work in this area would further current understanding of the patient viewpoint and encourage patient-centred and humanistic healthcare. Therefore, the overall aims of this doctoral work were to: (1) further current understanding of patients’ and healthcare professionals’ illness perceptions regarding asthma; and (2) explore the application of participant-generated drawings in advancing scholarly research and education in health. Methods Four sequential, inter-linked studies were conducted. Scoping literature review Firstly, a scoping literature review was conducted to examine the use of drawings to explore patients’ illness perceptions and experiences of their conditions. Electronic databases and reference lists were searched to identify English language studies using participant-generated drawings to explore adults’ perceptions and experiences of their illness. Using the scoping methodological framework, data were analysed with respect to each study’s design, key findings, and implications. Patients' illness perceptions regarding asthma Secondly, a qualitative study was conducted to explore how adult patients’ drawings illustrate their perceptions and experiences of asthma by drawing upon a theoretical model and a visual methodology framework, as well as triangulating patients’ asthma drawings and their responses to a commonly used quantitative measure of illness perceptions (Brief Illness Perception Questionnaire). The research protocol for this study was informed by the findings in the preceding scoping literature review. Adults with asthma participated in a one-to-one, in-person session focusing on their perspectives of asthma. This involved completion of the Brief Illness Perception Questionnaire; and a drawing activity which included participants’ verbal descriptions of their images. This discussion was guided by Guillemin’s adaptation of Rose’s critical visual methodology framework. Analysis was based on the patient participants’ transcribed descriptions of their drawings and consisted of a coding approach which was used to cluster thematic material in the drawn works and corresponding verbal descriptions. These data were then mapped to the items of the Brief Illness Perception Questionnaire, which was developed from the Common-Sense Model of Self-Regulation. Healthcare professionals’ perspectives of asthma Thirdly, based on the limited literature around healthcare professionals' insight into patient experiences of asthma, the subsequent study investigated the alignment between healthcare professionals’ and patients’ illness perceptions regarding asthma. This was conducted in two approaches: healthcare professionals' perspectives of asthma through drawings of their own perceptions, and their responses when viewing patients’ asthma drawings. Healthcare professionals from a range of professions took part in a one-to-one, in-person session. The healthcare professionals answered a demographic questionnaire; took part in a drawing activity depicting their perceptions of patients’ experiences of asthma and a discussion of the content guided by Guillemin’s adaptation of Rose’s critical visual methodology framework; and were invited to share their responses after viewing a collection of de-identified patients’ drawings from the preceding patient study. These patients were not in a patient-provider relationship with participating healthcare professionals. The healthcare professionals’ narrated descriptions of their own drawings and their responses to the patients’ drawings were transcribed verbatim. For the healthcare professionals’ drawings, the interview transcripts were examined alongside the relevant images and the described topics were summarised. For the healthcare professionals’ discussion around the patients’ drawings, a coding approach was used to interpret and cluster thematic material. University educators' feedback regarding drawing Lastly, focus groups were held with university educators in health to gather feedback and recommendations regarding the potential implementation of drawings as an educational tool or tertiary health students and continuing professional development. University educators (academics and clinical educators) from various health disciplines attended in-person focus groups. Participants answered a questionnaire regarding their demographics and teaching experience; viewed a collection of de-identified patients’ and healthcare professionals’ drawings from the previous two studies; and were invited to share their responses to these drawings and their feedback regarding the potential use of drawings as an educational tool for health students. The focus groups were transcribed verbatim, and the data was coded and categorised, consolidating the perspectives, recommendations and perceived challenges discussed. Findings Scoping literature review Forty-one studies were identified; thirty-two studies were from the original search in 2016 and an additional nine studies were from an updated search in 2018. The scoping literature review highlighted that there is a developing field of research using adult patient-generated drawings in health. Patients’ drawings of their illness revealed insightful knowledge about their perceptions, and characteristics of their drawings were associated with clinical and psychological markers. Drawing was a powerful adjunct to conventional data collection approaches, and demonstrated potential benefits for participants. However, there is ongoing need for research into patients’ drawings of their perceptions and experiences of respiratory conditions; there is currently no literature in this field on asthma. Patients' illness perceptions regarding asthma The patient study filled this gap; eighteen adults from metropolitan Sydney, Australia took part in this study. Thematic analysis of drawn works indicated that in addition to the physical aspects of asthma, the psychosocial consequences of the condition weighed largely in patients’ drawn expressions. The drawings provided powerful and evocative communication of their lived experience of asthma through visual metaphors, symbolism, colour and language. Three themes emerged from the analysis of the interviews of the participants’ interpretation of their drawings: (1) asthma is constrictive and restrictive, (2) feeling alone, feeling different, and (3) the life journey of asthma. The triangulation and comparison of the patients’ drawings and responses to the Brief Illness Perception Questionnaire demonstrated the value drawings added to this measure of illness perceptions. Whilst the questionnaire provided a rapid, numerical assessment of patients’ perceptions of their asthma, the drawings and subsequent\ discussions specified the ‘what,’ the ‘how,’ and the ‘why’ of the experience of living with asthma. Additional representations which were outside of the questionnaire’s scope were revealed, including the dynamic journey of asthma and challenges to personal identity. Overall, the drawings enhanced current insights into how asthma affects patients’ lives personally and led to recommendations for improving communication between patients and healthcare professionals about asthma self-management. Healthcare professionals’ perspectives of asthma Twenty-three healthcare professionals participated in this study. The sample consisted of respiratory physicians, general practitioners, pharmacists, nurses and physiotherapists practising in metropolitan Sydney, and regional and remote New South Wales, Australia. The comparison between the healthcare professionals’ own illustrations of asthma and their subsequent discussion around patients’ drawings showed a shift from a biomedical focus on the treatment and consequences of asthma, to a more biopsychosocial perspective encompassing emotional and social wellbeing. Their responses to the patients’ drawings had a temporal aspect to them; this involved an initial personal response, which was followed by a deeper reflection regarding clinical practice implications. The three themes that emerged from the healthcare professional participant interviews were: (1) revisiting personal expectations of patients’ illness experiences, (2) acknowledgement and empathy regarding the patient experience, and (3) clinical reflexivity. These findings provided support for the educational application of patients’ drawings in bringing healthcare professionals closer to the patient lived experience and promoting patient-centred healthcare practice. University educators' feedback regarding drawing Nine university educators from metropolitan Sydney took part in this study. The findings from the focus groups highlighted that the participating university educators supported theuse of drawings as a novel medium offering rich insights into the patient perspective while encouraging creative and critical thinking. Integrating drawings into small group and individual learning was seen as valuable for encouraging appreciation of the patient viewpoint in health and reflection of personal learning and development. Shifting students’ perspectives and possible assumptions to be better aligned with the patients’ experience was noted as central to adopting a practice approach which focuses on the person holistically, not solely their health conditions. The findings included perceived benefits and learning outcomes from drawings, and suggested teaching approaches integrating the use of drawings. Conclusions Collectively, the work presented in this thesis strengthens existing qualitative and quantitative literature around the substantial physical, psychological and social impact asthma has on the everyday lives of the individuals living with this condition. The findings also point to the need for deep reflection regarding current healthcare practice approaches in supporting people to live well with asthma. This work enhances current knowledge by gathering visual data in the form of drawings, revealing multiple layers of meaning through colour, spatial organisation, metaphors, and symbolic representations. These additional elements added richness and insight into patients’ illness perceptions and lived experiences of asthma, and also fostered patients’ sharing of their journeys. Furthermore, the findings demonstrated that drawings offer participatory possibilities to create, view and learn, engaging diverse groups including but not limited to patients, healthcare professionals, health students, and researchers. The feedback from university educators offers a pathway for the translation of drawings in aneducational context, which is essential to better equip graduating healthcare professionals of the future in patient-centred and humanistic healthcare.