Using drawings to explore patients’ perceptions of their illness: a scoping review

Figures & data

Figure 1 Results of search strategy.

Table 1 Background of studies included in this review

	Category	Number of Studies
Country	Australia	4
	Brazil	1
	Denmark	1
	Hong Kong	1
	New Zealand	4
	Poland	1
	Switzerland	1
	Thailand	1
	the Netherlands	7
	Uganda	1
	UK	5
	USA	5
Year of publication	1990–2000	1
	2001–2005	6
	2006–2010	11
	2011–2015	14

Table 2 Characteristics and findings of the studies included in this review

Citation, country, condition	Aim of study	Participants, sample size	Methods in conjunction to drawing	Study design, data analysis	Key findings
Besser et al;^Citation23 UK Osteoporosis	Explore how patients perceive their illness and treatment, and identify potential areas for intervention to improve treatment adherence	14 female outpatients	Interview: semi-structured	Qualitative Content analysis, thematic analysis	Patients’ illness and medication beliefs not in accord with scientific evidence. Low participant understanding of the role of medication and cause of osteoporosis. Concerns about medications and uncertainty about control
Broadbent et al;^Citation49 New Zealand Myocardial infarction	Examine whether drawings of the heart predict subsequent return to work, exercise, distress about symptoms and perceptions of recovery	74 inpatients	Self-reported questionnaire: employment status, time to return to work, physical recovery, heart condition timeline, distress, personal control, exercise Clinical markers: troponin-T	Mixed methods Content analysis, statistical analysis	Drawings of damage on the heart predict recovery better than medical indicators of damage. Drawing damage on the heart associated with slower return to work, perception of less recovery, heart condition lasting longer and lower control
Broadbent et al;^Citation47 New Zealand Myocardial infarction	Investigate how changes in drawings of the heart relate to psychological and functional recovery	69 inpatients	Self-reported questionnaire: Cardiac Anxiety Questionnaire, time to return to work, changes in exercise frequency, health care use, employment status	Mixed methods Content analysis, statistical analysis	Increases in size of heart drawn at 3 months post discharge related to slower return to work, higher cardiac anxiety, more phone calls to health services, increased worry about another myocardial infarction, increased activity restriction, higher use of alternative medicines, and less frequent exercise
Broadbent et al;^Citation48 USA Headache	Investigate whether drawings could be a useful way to assess patients’ headache perceptions	65 university students	Self-reported questionnaire: Brief Illness Perception Questionnaire, Short Form 36, pain rating	Mixed methods Content analysis, statistical analysis	Higher mean pain ratings associating with drawings and stress. Darker drawings associated with greater emotional distress and lower vitality. Larger drawing size associated with perceptions of worse consequences, symptoms and emotional representations, lower vitality, higher pain, lower happiness and more days of restricted activity
Cross et al;^Citation50 USA Spinal cord injury	Understand the personal experience of spinal cord injury	160 adults	Interview: type not mentioned	Qualitative Thematic analysis	Drawings highlighted concerns about visual presentation of the body and revealed breadth of ways participants expressed feelings about the lasting social consequences of spinal cord injury
Daleboudt et al;^Citation24 the Netherlands Systemic lupus erythematosus	Investigate patients’ illness perceptions and whether these perceptions were influenced by type of treatment for proliferative lupus nephritis	32 patients	Self-reported questionnaire: Brief Illness Perception Questionnaire	Mixed methods Content analysis, statistical analysis	Drawings of the kidney provided additional information about perceptions of treatment effectiveness, kidney function and patients’ understanding of their illness. Drawing characteristics associated with perceptions of consequences, identity, concern and personal control
Guillemin;^Citation52 Australia Heart disease	Explore women’s experiences and understanding of their condition	32 females	Interview: type not mentioned	Qualitative Thematic analysis	Three themes identified from drawings: the heart at the center, the heart in the lived body, and heart disease as a social illness
Guillemin;^Citation51 Australia Menopause	Explore women’s understanding of their condition, particularly in relation to their management practices	53 females	Interview: type not mentioned	Qualitative Thematic analysis	Three themes emerged from drawings: menopause as a life transition, menopause as lived experience, and menopause as loss and grief. Notable lack of images portraying medical understanding of menopause as hormone deficiency
Guillemin and Westall;^Citation53 Australia Postnatal depression	Explore women’s knowledge and experiences of their condition and their journey towards recovery	33 females	Interview: type not mentioned	Qualitative Thematic analysis	Key themes illustrated by drawings: darkness of the postnatal depression experience, followed by light on the path to recovery; despair and isolation of the postnatal depression experience; a sense of entrapment, and being alone and unable to escape the situation; and the exclusion of biomedical imagery despite the predominant biomedical understanding and treatment of this condition
Hammer et al;^Citation31 Denmark Gynecologic cancer	Explore how newly diagnosed women express the meaning of hope in drawings	15 females	Interview: unstructured	Qualitative Thematic analysis	Three themes emerged: hope as a spirit to move on, hope as energy through nature, and hope as a communion with families
Harrow et al;^Citation54 UK Breast cancer	Explore the nature, meaning and perceived origin of women’s mental images of their condition	15 females	Interview: unstructured	Qualitative Thematic analysis	Almost all participants had mental images of their breast cancer. Images reflected participants’ beliefs about their condition (its appearance, character and dangerousness) and appeared to be related to a number of fears and concerns
Henare et al;^Citation32 New Zealand Chronic pain	Explore participants’ experience of chronic pain	14 adults	Interview: type not mentioned	Qualitative Thematic analysis	Five main themes emerged: a journey of loss of self and redefinition; gaining pain and losing self; redefining self; identity through others; and being hopeful. Strong association between participation in valued occupations, maintenance and redefinition of identity, experiencing oneself as competent and being hopeful about the future
Ho et al;^Citation55 Hong Kong Breast cancer	Understand the experience of patients with breast cancer	67 females	Interview: type not mentioned	Qualitative Content analysis	Changes between pre- and post-intervention drawings: use of color, space, multiplicity, images of breasts, representations of cancer, and portrayal of negative emotions
Hoogerwerf et al;^Citation25 the Netherlands Non-small-cell lung cancer	Investigate patients’ illness perceptions, and associations between illness perceptions reflected in drawings, questionnaire scores and chest X-rays	12 adults	Self-reported questionnaire: Brief Illness Perception Questionnaire Interview: type not mentioned	Mixed methods Content analysis, statistical analysis	Participants scored low on concern, emotional response and timeline, and expressed their hopes of being cured and how thinking positively would help. Tumors were drawn larger compared with that on the chest radiograph. Drawings were moderately accurate representations of patients’ lungs. More accurate lung drawing related to less optimistic views about prognosis
Kaptein et al;^Citation56 the Netherlands Vestibular schwannoma	Assess patients’ perceptions of their condition	13 outpatients	Self-reported questionnaire: Short Form 36, Illness Perception Questionnaire-Revised	Mixed methods Content analysis, statistical analysis	Drawings differed substantially in the portrayal of the tumor. Drawing size after medical treatment was significantly smaller compared to before treatment
Kirkham et al;^Citation33 UK Chronic pain	Examine patients’ pictorial representations alongside their accounts of those images, in order to understand their lived experience of the condition	7 females	Interview: semi-structured	Qualitative Thematic analysis	Themes: pain as an object: sinister, violent, punitive; the color of pain: red and burning, black and brooding; representation of change in relationship with pain
Locsin et al;^Citation35 Uganda Ebola Hemorrhagic Fever	Advance understanding of the experience of Ebola Hemorrhagic Fever through artistic representation	11 adults	Interview: type not mentioned	Qualitative Thematic analysis	Four categories of understanding the experience of surviving Ebola: escape in peaceful awareness, hope for a world outside of fear, persistence in defying death, and constant fear of dying
Luthy et al;^Citation57 Switzerland Severe chronic obstructive pulmonary disease	Explore patients’ perception of dyspnea	32 adults	Self-reported questionnaire: New-York Heart Association Dyspnoea Scale, Borg Scale, Short Form 36, St George Respiratory Questionnaire, Maugeri Respiratory Failure Questionnaire, Hospital Anxiety and Depression Scale Interview: type not mentioned	Mixed methods Content analysis, statistical analysis	Drawings illustrated pervasiveness of dyspnea, obstruction and tightening. Prominent representations of the head and internal structures, for example, the lungs and airways
Marnocha et al;^Citation45 USA Perimenopause and menopause	Explore women’s personal experiences, and to use the findings of this study to add specific knowledge to support the transition theory	13 females	Interview: semi-structured	Qualitative Thematic analysis	Three major themes emerged: my body, sharing with others: not my mother, and going on with life. Participants repeatedly had questions and concerns regarding perimenopause, and reported receiving conflicting and confusing information.
Morgan et al;^Citation37 Australia Chronic vaginal thrush	Explore women’s experience of their condition and its treatment by complementary and alternative therapies	6 females	Interview: unstructured	Qualitative Thematic analysis	Participants discussed experiences of disconnection from the body. Western medical encounters were described as brief and providing limited treatment options, and that there was a lack of helpful interaction between patient and practitioner
Nowicka-Sauer;^Citation58 Poland Systemic lupus erythematosus	Examine patients’ illness perceptions and experiences	38 females	Interview: type not mentioned	Qualitative Data analysis not mentioned	Drawings reflected heterogeneity of clinical presentations and variety of symptoms as well as the ‘expansiveness’ and ‘aggressiveness’ of systemic lupus erythematosus
Pereira et al;^Citation43 Brazil Psychiatric hospitalization	Understand the negative effects of long-term hospitalization in a Brazilian psychiatric hospital	4 females	Interview: unstructured	Qualitative Data analysis not mentioned	Participants referred to process of social exclusion, emotional suffering, and inadequate hospital treatment, leading to recurrent hospitalization
Phillips et al;^Citation26 UK Chronic pain	Use drawing as a means to explore the content of pain-related images	54 adults	Self-reported questionnaire (analyzed separately from drawings): pain location, diagnosis, duration and intensity	Mixed methods Content analysis, thematic analysis	Three main themes identified: pain as an attacker, the nature of pain, and the impact of pain
Reynolds et al,^Citation59 New Zealand Heart failure	Evaluate whether patients’ drawings of the heart are associated with psychological, functional and clinical status	60 adults	Self-reported questionnaire: Hospital Anxiety and Depression Scale, Cardiac Anxiety Questionnaire, Minnesota Living with Heart Failure Questionnaire, Brief Illness Perception Questionnaire Clinical markers: left ventricular ejection fraction, serum level of B-type natriuretic peptide and sodium	Mixed methods Content analysis, statistical analysis	Heart depicted as significantly larger after heart failure as compared to before. Greater levels of heart-specific anxiety associated with significantly larger sized drawings. Drawings significantly related with clinical markers of illness severity, B-type natriuretic peptide level, and sodium level
Salmon;^Citation40 USA Human immuno-deficiency virus (HIV)	Gather a holistic description of the experiences of women living with the condition	10 females	Interview: type not mentioned	Qualitative Thematic analysis	Participants’ stories reflected diversity in cultural, socioeconomic, educational and religious backgrounds. However, they had similar problems about loneliness and self-disclosure
Scott;^Citation41 USA Acquired immune deficiency syndrome (AIDS) and HIV	Explore meanings surrounding the concept of AIDS among women with HIV	10 females	Interview: unstructured Free-listing exercise	Qualitative Thematic analysis	Illness meanings of AIDS reflected participants’ negotiation of physical, social and emotional threats posed by HIV. Participants who were HIV-positive displaced death and stigma away from an HIV diagnosis to an AIDS diagnosis. Participants with AIDS diagnoses struggled to construct illness meanings of AIDS that resist its association with ostracism and death
Scott et al;^Citation27 UK Melanoma	Investigate use of patient drawings to explore patient experiences of symptoms prior to health care use	63 adults	Interview: semi-structured Medical record: melanoma tumor classification, clinical photographs at diagnosis	Mixed methods Content analysis, statistical analysis	Drawing facilitated discussion of participants’ lesions and recall of events on the pathway to diagnosis. Common features of the drawings related to the view, shading, sections, shape and border of the lesions
Suwankhong and Liamputtong;^Citation38 Thailand Breast cancer	Describe experiences of breast cancer treatment among Thai women in southern Thailand	20 females	Interview: semi-structured	Qualitative Thematic analysis	Three themes emerged: being a breast cancer patient: visible signs and adverse effects of therapy; experiencing emotional chaos; and experiencing social dysfunction
Tiemensma et al;^Citation60 the Netherlands Long-term remission of Cushing’s syndrome	Explore utility of the drawing test and its relation to patients’ illness perceptions, quality of life and clinical disease severity	47 adults	Self-reported questionnaire: Illness Perception Questionnaire-Revised, Short Form 36, EuroQoL (Quality of Life) 5D, Cushing Quality of Life, Cushing’s Syndrome Severity Index	Mixed methods Content analysis, statistical analysis	Drawings’ characteristics strongly associated with the Cushing’s syndrome severity index and severity ratings of health professionals. No clear associations between characteristics of the drawings and quality of life or illness perceptions
Tiemensma et al;^Citation28 the Netherlands Long-term remission of acromegaly	Explore utility of the drawing test and its relation to patients’ illness perceptions and quality of life	50 adults	Self-reported questionnaire: Illness Perception Questionnaire-Revised, Physical Symptom Checklist, EuroQoL (Quality of Life) 5D, Acromegaly Quality of Life Questionnaire	Mixed methods Content analysis, statistical analysis	Larger drawings associated with more negative consequences, a higher score on emotional representations, more perceived symptoms, and impaired quality of life
van Leeuwen et al;^Citation29 the Netherlands Vestibular schwannoma	Examine whether patients’ illness perceptions can be assessed by drawings and are related to quality of life	139 patients	Self-reported questionnaire: Brief Illness Perception Questionnaire, Penn Acoustic Neuroma Quality of Life Scale (Dutch version)	Mixed methods Content analysis, statistical analysis	Illustration of emotions in the drawings negatively associated with quality of life
van Stralen et al;^Citation61 the Netherlands Postpartum hemorrhage	Explore women’s quality of life at follow-up after emergency embolization	21 females	Self-reported questionnaire: State-Trait Anxiety Inventory, Brief Illness Perception Questionnaire, Symptom Checklist 90, Utrecht Coping list, Short Form 36	Mixed methods Content analysis, statistical analysis	Drawings showed participants had very vivid conceptualizations of the embolization, with post-embolization drawings indicating recovery

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