This article was downloaded by: [New York University] On: 06 June 2015, At: 15:16 Publisher: Routledge Informa Ltd Registered in England and Wales Registered Number: 1072954 Registered office: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK
Behavioral Medicine Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/vbmd20
Illness Perceptions of Cystic Fibrosis: A Comparison of Young Adults with CF and Same Aged Peers a
a
Kaya Beinke PhD (Clin) , Frances O'Callaghan PhD & Shirley Morrissey PhD
a
a
School of Applied Psychology, Griffith University, Gold Coast and Menzies Health Institute Queensland Accepted author version posted online: 26 May 2015.
Click for updates To cite this article: Kaya Beinke PhD (Clin), Frances O'Callaghan PhD & Shirley Morrissey PhD (2015): Illness Perceptions of Cystic Fibrosis: A Comparison of Young Adults with CF and Same Aged Peers, Behavioral Medicine, DOI: 10.1080/08964289.2015.1045824 To link to this article: http://dx.doi.org/10.1080/08964289.2015.1045824
Disclaimer: This is a version of an unedited manuscript that has been accepted for publication. As a service to authors and researchers we are providing this version of the accepted manuscript (AM). Copyediting, typesetting, and review of the resulting proof will be undertaken on this manuscript before final publication of the Version of Record (VoR). During production and pre-press, errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal relate to this version also.
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http:// www.tandfonline.com/page/terms-and-conditions
ACCEPTED MANUSCRIPT Illness Perceptions of Cystic Fibrosis: A Comparison of Young Adults with CF and Same Aged Peers Kaya Beinke PhD (Clin)a, Frances O’Callaghan PhD a, Shirley Morrissey PhD a a
School of Applied Psychology, Griffith University, Gold Coast and Menzies Health Institute
Downloaded by [New York University] at 15:16 06 June 2015
Queensland
Email addresses: Kaya Beinke, Clinical Psychologist [email protected] Frances O’Callaghan, Associate Professor, Health Psychology [email protected] Shirley Morrissey, Associate Professor, Clinical and Health Psychology [email protected]
Corresponding author: Frances O’Callaghan PhD Fax: 61 7 56788291 Email: [email protected]
ABSTRACT In the last two decades the life expectancy for individuals with Cystic Fibrosis (CF) has increased significantly. The limited research examining the psycho-social experiences of young adults with CF indicates that other young adults lack awareness and understanding of CF. Using the Illness Perception Questionnaire, perceptions of CF were examined in individuals with CF
1
ACCEPTED MANUSCRIPT
ACCEPTED MANUSCRIPT aged 16 to 25 and two groups of same aged peers: those who did, or did not, know someone with CF. ANOVA with pairwise comparisons revealed that individuals with CF perceived significantly fewer physical symptoms of illness and fewer emotional and practical consequences of CF than both groups of peers. Individuals with CF also perceived significantly more personal control and greater understanding of CF than peers without experience of CF. Implications for enhancing opportunities for social engagement and for the provision of social support for young
Downloaded by [New York University] at 15:16 06 June 2015
people with CF are identified.
Key words: cystic fibrosis, young adults, illness perceptions, illness representations
2
ACCEPTED MANUSCRIPT
ACCEPTED MANUSCRIPT INTRODUCTION It is well understood that individuals with cystic fibrosis (CF) face a number of medical challenges. In the last 30 years medical understanding of CF and medical interventions available for individuals with CF has increased patients’ expected lifespan from less than 20 years to beyond 50 years.1 As it has only been in the last couple of decades that CF patients commonly survive into adulthood, there is a large gap in our understanding of the psychological needs of
Downloaded by [New York University] at 15:16 06 June 2015
this patient group.2 One particular gap in research into cystic fibrosis is that of understanding how individuals with CF and those within the general community perceive CF. 3 The way in which an individual perceives their illness can impact their mood and coping abilities.4 Furthermore, how members of the community perceive CF can impact their interactions with CF patients. One consequence for CF patients is that these perceptions can influence both the quality of and access to social support of peers in the community. Some patients with CF report hesitation to disclose their illness to individuals outside their immediate family due to their concerns about possible rejection or the need to have to ‘re-tell their story over and over’ because of limited understanding of CF in the community.5,6 Individuals with CF commonly report that coughing and its associated discharge of sputum and frequent ingestion of enzyme tablets are characteristics of CF that often lead to negative social interactions when CF is not well understood by peers.2,7-8 Furthermore when peers are given a medical explanation that is not well understood, some peers may fear that CF is contagious, and this fear can compromise social relationships.9,10 These accounts of social
3
ACCEPTED MANUSCRIPT
ACCEPTED MANUSCRIPT interactions from individuals with CF concur with social psychology research examining the effects of stigma on the social relationships of those with chronic illness. 11,12 There is an emerging body of research that has also examined how similarity and dissimilarity in perceptions of an illness between caregivers and patients can impact the provision of social support. Similarity in perceptions of illness between cardiac patients and their partners has been associated with better physical, psychological and social functioning outcomes
Downloaded by [New York University] at 15:16 06 June 2015
for patients. 4 Dissimilarities in perceptions of illness, especially minimization of the illness by partners, has been found to have a negative impact on adaptive outcomes for patients with chronic illness.13 Given that individuals with CF are living well into adulthood, it is important to understand how peers of individuals with CF perceive this illness as they will be a key source of support for individuals with CF into their adulthood. A useful model for understanding how individuals process and respond to illness-related threats to wellbeing is the self-regulation model (SRM).14 The model provides a framework for examining how individuals cognitively represent an illness across a range of domains. The predominant psychometric measure (IPQ-R)15 used to operationalize these cognitive representations examines seven domains of illness representations; namely, identity, cause, consequences, timeline (chronicity and cyclical nature), controllability (personal control and treatment efficacy), emotional representations and illness coherence. While there is a large body of research which has investigated the experience of illness using various versions of the IPQ16,17 very few studies have applied this framework to the understanding of CF. Bucks and colleagues18 assessed the role of illness representations in predicting treatment adherence in a sample of adolescents (11 to 17 years) with CF. Findings indicated that
4
ACCEPTED MANUSCRIPT
ACCEPTED MANUSCRIPT adolescents reported greater adherence to treatment when they perceived their illness as being chronic and when the available treatment would be useful in improving health. Sawicki and colleagues3 examined the role of illness representations in predicting health-related quality of life in adults with CF (mean age = 35 years). They found that illness perceptions were more strongly related to psychosocial aspects of adjustment for individuals with CF rather than physical aspects of health-related quality of life.
Downloaded by [New York University] at 15:16 06 June 2015
In addition to a limited body of research that examines illness perceptions of individuals with CF, there are no studies to our knowledge that examine illness perceptions of CF in lay samples. Two studies have been identified that examine differences in perceptions of healthrelated quality of life between parents of individuals with CF and adolescent CF patients. Britto and colleagues19 and Havermans et al.20 identified that parents of adolescents with CF possess more negative views of health-related quality of life than the CF patient group. However, only three studies could be identified that have compared ratings of patients’ perceptions of illness with those of members of the general community and none of these has examined perceptions of CF. Anagnostopolous and Spanea21 investigated the perceptions of breast cancer in individuals with and without the disease and found that healthy individuals had more negative perceptions of illness than individuals with breast cancer. Holliday et al.,22 however, reported the opposite effect when comparing illness representations of individuals with and without anorexia nervosa; reporting that healthy individuals had more positive perceptions of the illness than those with anorexia. Finally, Vollman et al.23 compared perceptions of depression of individuals with and without a history of depression and found mixed results. On a number of the IPQ-R domains the
5
ACCEPTED MANUSCRIPT
ACCEPTED MANUSCRIPT depressed and never-depressed groups had similar representations of illness, however, the neverdepressed group perceived fewer emotional consequences of depression, but rated the illness as being more severe and more responsive to treatment than depressed individuals. While these studies have helped to identify differences in the perceptions of individuals with and without chronic illness, they were unable to identify the role of knowledge and experience with a chronic illness on illness perceptions in lay groups. A key aim of the current
Downloaded by [New York University] at 15:16 06 June 2015
study was to identify whether individuals who have known someone with CF have greater similarity in illness perceptions to those of CF patients or individuals without experience with CF. It was hypothesized that those who had experience with CF would have more similar illness perceptions to those of people with CF than those of individuals without experience with CF given that they would have more intimate knowledge of the illness and its impact on patients. Following the results of Anagnostopolous and Spanea,21 it was also hypothesized that the lay groups would have more negative perceptions of CF than CF patients. Putting these hypotheses together, it was predicted that the most positive illness perceptions would be made by CF patients, followed by individuals who have had experience with CF. Individuals without experience of CF were expected to report the most negative perceptions of the illness. A sample of late adolescents and young adults with CF (16 to 25 year olds) and their same-aged peers, consisting of a sample of university students, were obtained to test these predictions.
6
ACCEPTED MANUSCRIPT
ACCEPTED MANUSCRIPT METHODS Participants and Procedure CF patient sample. Individuals with CF (aged between 16 and 25) were recruited through three state-based cystic fibrosis support organisations across Australia. A total of 49 patients (19 males and 30 females; M =19.41 years SD = 2.84 years) completed the questionnaire. Ethical
Downloaded by [New York University] at 15:16 06 June 2015
approval was granted by the University’s Human Research Ethics Committee and all participants provided written consent. Lay student sample. A total of 122 (79 female; 43 male) undergraduate students enrolled in non-health related subjects (e.g., business statistics, politics, visual arts, engineering, hospitality) were recruited from a Queensland university. Participants were aged between 17 and 25 years (M = 21.92, SD = 1.92). Participants were asked about their previous experience with CF (i.e., if they have CF, or had known/know anyone with CF). This resulted in a lay sample group of 20 students who had known someone with CF and 102 students had not had previous experience with CF. Given that there were significant differences in sample sizes between the CF patient and peer groups, a random sample of 50 participants from the peer sample who had not known someone with CF were retained for the main analyses. Measures Illness representations. Participants’ representations of CF were measured using the Illness Perception Questionnaire-Revised (IPQ-R).15 This measure examines individuals’
7
ACCEPTED MANUSCRIPT
ACCEPTED MANUSCRIPT perceptions of illness symptomatology, timeline, cure/control, consequences, causality, illness understanding and emotional representations of illness. For the student and patient samples the symptom subscale included a 14-item symptom checklist and required participants to indicate whether or not they believed particular symptoms (e.g., weight loss, fatigue) are related to CF. This was measured with yes/no dichotomous response options. A total score was calculated by summing together the number of ‘yes’
Downloaded by [New York University] at 15:16 06 June 2015
responses on each symptom subscale. Participant beliefs regarding symptom management and curability of illness were measured on two subscales; one six-item scale examining personal control of illness (e.g., “People with CF have the power to influence their illness”/ “I have the power to influence my illness) and one five-item subscale examining perceptions of the effectiveness of medical treatment (treatment control) for CF (e.g., “Treatment can control CF”). Next, the consequences of illness subscale examined individuals’ anticipated outcomes and effects stemming from the illness with six items (e.g., “CF causes difficulties for those who are close to someone with CF”). Perceptions of the nature of CF over time were assessed with the four items on the timeline-cyclical subscale (e.g., “CF is very unpredictable”). The timeline-acute/chronic subscale from the original IPQ-R was not included in the current study as it was considered that little variability would be obtained on this measure and it may be considered insensitive by the CF patient group. Participants’ overall understanding of CF and its implications was measured with the five-item illness coherence subscale (e.g., “CF is a mystery to me”). Finally, participants’ emotional representations of illness were examined on a six-item subscale (e.g., “When people with CF think about their illness they become upset”/ “When I think about CF I
8
ACCEPTED MANUSCRIPT
ACCEPTED MANUSCRIPT become upset”). These final seven subscales of the IPQ-R required the participant to indicate the degree to which they endorsed each statement about CF on a 5-point Likert-type scale (1strongly disagree to 5- strongly agree). The causality subscale of the IPQ-R was not included in the current study as it was considered that all CF patients would be aware of the genetic cause of CF and little variability would be obtained in measures on this scale and it would not be amenable for comparative analyses with the lay samples.
Downloaded by [New York University] at 15:16 06 June 2015
Total scores for each subscale were calculated by summing each item in the subscale. The four-item scales had a possible score range of 4 to 16; for five-item scales the range was 5 to 25; and the range was 6 to 36 for the six-item scales. A high score on the consequences, emotional representations, timeline-acute/chronic and timeline-cyclical subscales indicated negative perceptions of these domains of CF; high scores on the personal control, treatment control, and illness coherence subscales indicated more positive perceptions of CF. Good to excellent reliability coefficients of .71 and above were observed for all IPQ-R subscales for the patient group. For the student sample, good to excellent internal consistency was also found for most subscales. However, lower reliability was observed for the personal control (ά = .63) and treatment control (ά = .56) subscales. This somewhat lower reliability was also found by Holliday et al.22 who reported alphas of .55 and .56 for the personal and treatment control subscales of the IPQ-R for a lay sample when rating their perceptions of individuals with anorexia nervosa. Accordingly, care was taken when interpreting results incorporating these measures.
RESULTS
9
ACCEPTED MANUSCRIPT
ACCEPTED MANUSCRIPT Table 1 presents the descriptive statistics for IPQ-R domains for the CF patient, the peer sample who had known someone with CF, and the peer sample who had not known someone with CF. Differences between the ratings for the three groups for each of the illness perception domains were analysed using ANOVA and pairwise comparisons, evaluated at p =.05. For all subscales except treatment control, significant effects of group on illness perception ratings were obtained (see Table 2). The results of the pairwise comparisons for each significant main effect
Downloaded by [New York University] at 15:16 06 June 2015
are discussed below. (Insert Table 1 about here) (Insert Table 2 about here) Regarding perceptions of symptoms related to CF, both peers who had experience with CF (p=.003) and peers who did not have experience with CF (p=.008) perceived significantly more symptoms being related to CF than symptoms reported by the CF patient group. Peers with and without experience of CF did not significantly differ in their perceptions of the number of symptoms related to CF (p=.830). Examining the results for perceptions of consequences of CF, patients reported that CF has significantly fewer consequences than peers who had experience with CF (p=.001) and those who did not (p=.052). The difference in ratings between peers with experience with CF and peers who did not have experience with CF was not significant (p=.197). Regarding perceptions of personal control of CF, peers who did not have experience with CF perceived individuals with CF as having less control over their illness than both patients (p
Behavioral Medicine Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/vbmd20
Illness Perceptions of Cystic Fibrosis: A Comparison of Young Adults with CF and Same Aged Peers a
a
Kaya Beinke PhD (Clin) , Frances O'Callaghan PhD & Shirley Morrissey PhD
a
a
School of Applied Psychology, Griffith University, Gold Coast and Menzies Health Institute Queensland Accepted author version posted online: 26 May 2015.
Click for updates To cite this article: Kaya Beinke PhD (Clin), Frances O'Callaghan PhD & Shirley Morrissey PhD (2015): Illness Perceptions of Cystic Fibrosis: A Comparison of Young Adults with CF and Same Aged Peers, Behavioral Medicine, DOI: 10.1080/08964289.2015.1045824 To link to this article: http://dx.doi.org/10.1080/08964289.2015.1045824
Disclaimer: This is a version of an unedited manuscript that has been accepted for publication. As a service to authors and researchers we are providing this version of the accepted manuscript (AM). Copyediting, typesetting, and review of the resulting proof will be undertaken on this manuscript before final publication of the Version of Record (VoR). During production and pre-press, errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal relate to this version also.
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http:// www.tandfonline.com/page/terms-and-conditions
ACCEPTED MANUSCRIPT Illness Perceptions of Cystic Fibrosis: A Comparison of Young Adults with CF and Same Aged Peers Kaya Beinke PhD (Clin)a, Frances O’Callaghan PhD a, Shirley Morrissey PhD a a
School of Applied Psychology, Griffith University, Gold Coast and Menzies Health Institute
Downloaded by [New York University] at 15:16 06 June 2015
Queensland
Email addresses: Kaya Beinke, Clinical Psychologist [email protected] Frances O’Callaghan, Associate Professor, Health Psychology [email protected] Shirley Morrissey, Associate Professor, Clinical and Health Psychology [email protected]
Corresponding author: Frances O’Callaghan PhD Fax: 61 7 56788291 Email: [email protected]
ABSTRACT In the last two decades the life expectancy for individuals with Cystic Fibrosis (CF) has increased significantly. The limited research examining the psycho-social experiences of young adults with CF indicates that other young adults lack awareness and understanding of CF. Using the Illness Perception Questionnaire, perceptions of CF were examined in individuals with CF
1
ACCEPTED MANUSCRIPT
ACCEPTED MANUSCRIPT aged 16 to 25 and two groups of same aged peers: those who did, or did not, know someone with CF. ANOVA with pairwise comparisons revealed that individuals with CF perceived significantly fewer physical symptoms of illness and fewer emotional and practical consequences of CF than both groups of peers. Individuals with CF also perceived significantly more personal control and greater understanding of CF than peers without experience of CF. Implications for enhancing opportunities for social engagement and for the provision of social support for young
Downloaded by [New York University] at 15:16 06 June 2015
people with CF are identified.
Key words: cystic fibrosis, young adults, illness perceptions, illness representations
2
ACCEPTED MANUSCRIPT
ACCEPTED MANUSCRIPT INTRODUCTION It is well understood that individuals with cystic fibrosis (CF) face a number of medical challenges. In the last 30 years medical understanding of CF and medical interventions available for individuals with CF has increased patients’ expected lifespan from less than 20 years to beyond 50 years.1 As it has only been in the last couple of decades that CF patients commonly survive into adulthood, there is a large gap in our understanding of the psychological needs of
Downloaded by [New York University] at 15:16 06 June 2015
this patient group.2 One particular gap in research into cystic fibrosis is that of understanding how individuals with CF and those within the general community perceive CF. 3 The way in which an individual perceives their illness can impact their mood and coping abilities.4 Furthermore, how members of the community perceive CF can impact their interactions with CF patients. One consequence for CF patients is that these perceptions can influence both the quality of and access to social support of peers in the community. Some patients with CF report hesitation to disclose their illness to individuals outside their immediate family due to their concerns about possible rejection or the need to have to ‘re-tell their story over and over’ because of limited understanding of CF in the community.5,6 Individuals with CF commonly report that coughing and its associated discharge of sputum and frequent ingestion of enzyme tablets are characteristics of CF that often lead to negative social interactions when CF is not well understood by peers.2,7-8 Furthermore when peers are given a medical explanation that is not well understood, some peers may fear that CF is contagious, and this fear can compromise social relationships.9,10 These accounts of social
3
ACCEPTED MANUSCRIPT
ACCEPTED MANUSCRIPT interactions from individuals with CF concur with social psychology research examining the effects of stigma on the social relationships of those with chronic illness. 11,12 There is an emerging body of research that has also examined how similarity and dissimilarity in perceptions of an illness between caregivers and patients can impact the provision of social support. Similarity in perceptions of illness between cardiac patients and their partners has been associated with better physical, psychological and social functioning outcomes
Downloaded by [New York University] at 15:16 06 June 2015
for patients. 4 Dissimilarities in perceptions of illness, especially minimization of the illness by partners, has been found to have a negative impact on adaptive outcomes for patients with chronic illness.13 Given that individuals with CF are living well into adulthood, it is important to understand how peers of individuals with CF perceive this illness as they will be a key source of support for individuals with CF into their adulthood. A useful model for understanding how individuals process and respond to illness-related threats to wellbeing is the self-regulation model (SRM).14 The model provides a framework for examining how individuals cognitively represent an illness across a range of domains. The predominant psychometric measure (IPQ-R)15 used to operationalize these cognitive representations examines seven domains of illness representations; namely, identity, cause, consequences, timeline (chronicity and cyclical nature), controllability (personal control and treatment efficacy), emotional representations and illness coherence. While there is a large body of research which has investigated the experience of illness using various versions of the IPQ16,17 very few studies have applied this framework to the understanding of CF. Bucks and colleagues18 assessed the role of illness representations in predicting treatment adherence in a sample of adolescents (11 to 17 years) with CF. Findings indicated that
4
ACCEPTED MANUSCRIPT
ACCEPTED MANUSCRIPT adolescents reported greater adherence to treatment when they perceived their illness as being chronic and when the available treatment would be useful in improving health. Sawicki and colleagues3 examined the role of illness representations in predicting health-related quality of life in adults with CF (mean age = 35 years). They found that illness perceptions were more strongly related to psychosocial aspects of adjustment for individuals with CF rather than physical aspects of health-related quality of life.
Downloaded by [New York University] at 15:16 06 June 2015
In addition to a limited body of research that examines illness perceptions of individuals with CF, there are no studies to our knowledge that examine illness perceptions of CF in lay samples. Two studies have been identified that examine differences in perceptions of healthrelated quality of life between parents of individuals with CF and adolescent CF patients. Britto and colleagues19 and Havermans et al.20 identified that parents of adolescents with CF possess more negative views of health-related quality of life than the CF patient group. However, only three studies could be identified that have compared ratings of patients’ perceptions of illness with those of members of the general community and none of these has examined perceptions of CF. Anagnostopolous and Spanea21 investigated the perceptions of breast cancer in individuals with and without the disease and found that healthy individuals had more negative perceptions of illness than individuals with breast cancer. Holliday et al.,22 however, reported the opposite effect when comparing illness representations of individuals with and without anorexia nervosa; reporting that healthy individuals had more positive perceptions of the illness than those with anorexia. Finally, Vollman et al.23 compared perceptions of depression of individuals with and without a history of depression and found mixed results. On a number of the IPQ-R domains the
5
ACCEPTED MANUSCRIPT
ACCEPTED MANUSCRIPT depressed and never-depressed groups had similar representations of illness, however, the neverdepressed group perceived fewer emotional consequences of depression, but rated the illness as being more severe and more responsive to treatment than depressed individuals. While these studies have helped to identify differences in the perceptions of individuals with and without chronic illness, they were unable to identify the role of knowledge and experience with a chronic illness on illness perceptions in lay groups. A key aim of the current
Downloaded by [New York University] at 15:16 06 June 2015
study was to identify whether individuals who have known someone with CF have greater similarity in illness perceptions to those of CF patients or individuals without experience with CF. It was hypothesized that those who had experience with CF would have more similar illness perceptions to those of people with CF than those of individuals without experience with CF given that they would have more intimate knowledge of the illness and its impact on patients. Following the results of Anagnostopolous and Spanea,21 it was also hypothesized that the lay groups would have more negative perceptions of CF than CF patients. Putting these hypotheses together, it was predicted that the most positive illness perceptions would be made by CF patients, followed by individuals who have had experience with CF. Individuals without experience of CF were expected to report the most negative perceptions of the illness. A sample of late adolescents and young adults with CF (16 to 25 year olds) and their same-aged peers, consisting of a sample of university students, were obtained to test these predictions.
6
ACCEPTED MANUSCRIPT
ACCEPTED MANUSCRIPT METHODS Participants and Procedure CF patient sample. Individuals with CF (aged between 16 and 25) were recruited through three state-based cystic fibrosis support organisations across Australia. A total of 49 patients (19 males and 30 females; M =19.41 years SD = 2.84 years) completed the questionnaire. Ethical
Downloaded by [New York University] at 15:16 06 June 2015
approval was granted by the University’s Human Research Ethics Committee and all participants provided written consent. Lay student sample. A total of 122 (79 female; 43 male) undergraduate students enrolled in non-health related subjects (e.g., business statistics, politics, visual arts, engineering, hospitality) were recruited from a Queensland university. Participants were aged between 17 and 25 years (M = 21.92, SD = 1.92). Participants were asked about their previous experience with CF (i.e., if they have CF, or had known/know anyone with CF). This resulted in a lay sample group of 20 students who had known someone with CF and 102 students had not had previous experience with CF. Given that there were significant differences in sample sizes between the CF patient and peer groups, a random sample of 50 participants from the peer sample who had not known someone with CF were retained for the main analyses. Measures Illness representations. Participants’ representations of CF were measured using the Illness Perception Questionnaire-Revised (IPQ-R).15 This measure examines individuals’
7
ACCEPTED MANUSCRIPT
ACCEPTED MANUSCRIPT perceptions of illness symptomatology, timeline, cure/control, consequences, causality, illness understanding and emotional representations of illness. For the student and patient samples the symptom subscale included a 14-item symptom checklist and required participants to indicate whether or not they believed particular symptoms (e.g., weight loss, fatigue) are related to CF. This was measured with yes/no dichotomous response options. A total score was calculated by summing together the number of ‘yes’
Downloaded by [New York University] at 15:16 06 June 2015
responses on each symptom subscale. Participant beliefs regarding symptom management and curability of illness were measured on two subscales; one six-item scale examining personal control of illness (e.g., “People with CF have the power to influence their illness”/ “I have the power to influence my illness) and one five-item subscale examining perceptions of the effectiveness of medical treatment (treatment control) for CF (e.g., “Treatment can control CF”). Next, the consequences of illness subscale examined individuals’ anticipated outcomes and effects stemming from the illness with six items (e.g., “CF causes difficulties for those who are close to someone with CF”). Perceptions of the nature of CF over time were assessed with the four items on the timeline-cyclical subscale (e.g., “CF is very unpredictable”). The timeline-acute/chronic subscale from the original IPQ-R was not included in the current study as it was considered that little variability would be obtained on this measure and it may be considered insensitive by the CF patient group. Participants’ overall understanding of CF and its implications was measured with the five-item illness coherence subscale (e.g., “CF is a mystery to me”). Finally, participants’ emotional representations of illness were examined on a six-item subscale (e.g., “When people with CF think about their illness they become upset”/ “When I think about CF I
8
ACCEPTED MANUSCRIPT
ACCEPTED MANUSCRIPT become upset”). These final seven subscales of the IPQ-R required the participant to indicate the degree to which they endorsed each statement about CF on a 5-point Likert-type scale (1strongly disagree to 5- strongly agree). The causality subscale of the IPQ-R was not included in the current study as it was considered that all CF patients would be aware of the genetic cause of CF and little variability would be obtained in measures on this scale and it would not be amenable for comparative analyses with the lay samples.
Downloaded by [New York University] at 15:16 06 June 2015
Total scores for each subscale were calculated by summing each item in the subscale. The four-item scales had a possible score range of 4 to 16; for five-item scales the range was 5 to 25; and the range was 6 to 36 for the six-item scales. A high score on the consequences, emotional representations, timeline-acute/chronic and timeline-cyclical subscales indicated negative perceptions of these domains of CF; high scores on the personal control, treatment control, and illness coherence subscales indicated more positive perceptions of CF. Good to excellent reliability coefficients of .71 and above were observed for all IPQ-R subscales for the patient group. For the student sample, good to excellent internal consistency was also found for most subscales. However, lower reliability was observed for the personal control (ά = .63) and treatment control (ά = .56) subscales. This somewhat lower reliability was also found by Holliday et al.22 who reported alphas of .55 and .56 for the personal and treatment control subscales of the IPQ-R for a lay sample when rating their perceptions of individuals with anorexia nervosa. Accordingly, care was taken when interpreting results incorporating these measures.
RESULTS
9
ACCEPTED MANUSCRIPT
ACCEPTED MANUSCRIPT Table 1 presents the descriptive statistics for IPQ-R domains for the CF patient, the peer sample who had known someone with CF, and the peer sample who had not known someone with CF. Differences between the ratings for the three groups for each of the illness perception domains were analysed using ANOVA and pairwise comparisons, evaluated at p =.05. For all subscales except treatment control, significant effects of group on illness perception ratings were obtained (see Table 2). The results of the pairwise comparisons for each significant main effect
Downloaded by [New York University] at 15:16 06 June 2015
are discussed below. (Insert Table 1 about here) (Insert Table 2 about here) Regarding perceptions of symptoms related to CF, both peers who had experience with CF (p=.003) and peers who did not have experience with CF (p=.008) perceived significantly more symptoms being related to CF than symptoms reported by the CF patient group. Peers with and without experience of CF did not significantly differ in their perceptions of the number of symptoms related to CF (p=.830). Examining the results for perceptions of consequences of CF, patients reported that CF has significantly fewer consequences than peers who had experience with CF (p=.001) and those who did not (p=.052). The difference in ratings between peers with experience with CF and peers who did not have experience with CF was not significant (p=.197). Regarding perceptions of personal control of CF, peers who did not have experience with CF perceived individuals with CF as having less control over their illness than both patients (p
