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Coping styles in adults with cystic fibrosis: implications for emotional and social quality of life a
a
a
Rachel Mc Hugh , Danielle Mc Feeters , David Boyda & Siobhan a
O’Neill a
School of Psychology, Faculty of Health and Life Sciences, Ulster University, Magee Campus, Northern Ireland, Londonderry, Co. Derry, BT48 7JL, United Kingdom Published online: 18 Mar 2015.
Click for updates To cite this article: Rachel Mc Hugh, Danielle Mc Feeters, David Boyda & Siobhan O’Neill (2015): Coping styles in adults with cystic fibrosis: implications for emotional and social quality of life, Psychology, Health & Medicine, DOI: 10.1080/13548506.2015.1020317 To link to this article: http://dx.doi.org/10.1080/13548506.2015.1020317
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Psychology, Health & Medicine, 2015 http://dx.doi.org/10.1080/13548506.2015.1020317
Coping styles in adults with cystic fibrosis: implications for emotional and social quality of life Rachel Mc Hugh*,1, Danielle Mc Feeters1, David Boyda and Siobhan O’Neill School of Psychology, Faculty of Health and Life Sciences, Ulster University, Magee Campus, Northern Ireland, Londonderry, Co. Derry, BT48 7JL, United Kingdom
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(Received 17 November 2014; accepted 13 February 2015) As life expectancy increases, interest has grown surrounding the factors that may influence quality of life (QOL) for people with cystic fibrosis (CF). The aim of the current study was to examine which specific coping styles were positively or negatively associated with social and emotional QOL in a CF sample. One hundred and twenty-two respondents aged 18 and over were recruited through an online support group. Respondents completed the ‘CF Questionnaire-Revised (CFQ-R)’ and the ‘Brief COPE’. The CFQ-R is a disease-specific instrument designed to measure the impact of CF on nine QOL domains and the Brief COPE is a 28 item questionnaire which assesses 14 coping scales. A multivariate regression model revealed that higher substance abuse and disengagement was associated with lower emotional QOL whereas greater use of religion, instrumental coping and acceptance was positively associated with emotional QOL. Active coping was linked to better social QOL and a negative association was reported between distraction coping with both emotional and social domains. Given the burden of CF, ascertaining which factors enhance or diminish emotion and social well-being is now an integral component of QOL research. The current findings may therefore have value in informing clinical interventions which aim to cater for the psychological needs of individuals with CF. Keywords: quality of life; coping; emotional; social; cystic fibrosis (CF)
Introduction Cystic fibrosis (CF) is a chronic life limiting, genetic condition caused by a single faulty gene. This gene results in the production of excess thickened mucus, often leading to blockages of the respiratory and digestive systems (Davis, 2006). As the illness progresses, this can give rise to subsequent complications including recurrent lung infections, malnutrition and CF-related diabetes (Culhane, George, Pearo, & Spoede, 2013; Mackie, Thornton, & Edenborough, 2003). A new breakthrough drug called ‘Kalydeco’, along with advances in treatment management strategies has led to prolonged life expectancy (Bellis et al., 2007; Cohen-Cymberknoh, Shoseyov, & Kerem, 2011). Nonetheless, CF symptoms and the intensive treatment regimen which accompanies the illness continues to have a debilitating effect on the daily life of the individual (Sawicki, Sellers, & Robinson, 2009). This has led to a need for an increased understanding of the ongoing psychological burden associated with CF. Traditionally, morbidity and mortality rates were utilized as a measure of disease burden; however, attention is now being *Corresponding author. Email: [email protected] 1 These authors contributed equally to this work. © 2015 Taylor & Francis
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directed towards aspects of psychological adjustment (Szyndler, Towns, van Asperen, & McKay, 2005). As such, health-related quality of life (HRQOL) is increasingly examined as a means of assessing disease burden as well as supplementing information acquired from clinical outcome measures (Abbott et al., 2011; Ashish, Shaw, McShane, Ledson, & Walshaw, 2012; Royce & Carl, 2011). A host of studies have investigated the biological and physiological factors which influence CF survival rates (Britto et al., 2002; Curtis, Burke, Kassner, & Aitken, 1997; Orenstein, Winnie, & Altman, 2002; Schechter & Margolis, 1998). However, comparably fewer studies have attempted to ascertain contributors to quality of life (QOL) (Abbott, Hart, Morton, Gee, & Conway, 2008). To date, both demographic and clinical factors have been implicated in HRQOL for people with CF. Studies have consistently demonstrated a disparity in gender with females typically encountering a poorer prognosis in terms of both general health and life expectancy. Whilst the cause of the gender gap remains to be determined, some possible explanations include the earlier acquisition of Paeruginosa amongst females (Demko, Byard, & Davis, 1995), an increased prevalence of CF-related diabetes (Adler, Shine, Haworth, Leelarathna, & Bilton, 2011), reduced activity levels (Selvadurai et al., 2002), as well as poorer mental and nutritional health (ArringtonSanders et al., 2006; Kerem, Reisman, Corey, Canny & Levison, 1992). In terms of clinical factors, higher lung function percentages are generally associated with enhanced QOL outcomes (Bradley, McAlister, & Elborn, 2001; Gee, Abbott, Conway, Etherington, & Webb, 2003; Riekert, Bartlett, Boyle, Krishnan, & Rand, 2007). Furthermore, studies have noted increases in reported QOL in conjunction with improvements in lung function (Gee, Abbott, Conway, Etherington, & Webb, 2000). Whilst these features have helped elucidate on potential contributors to QOL, a substantial degree of the variance still remains to be accounted for (Gee et al., 2005). As such, focus has increasingly been directed towards psychological and psychosocial factors as possible explanations. Several studies have concluded that coping mechanisms can buffer the effects of stressors on psychological adjustment (Ano & Vasconcelles, 2005; Elliot, Thrash, & Murayama, 2011; Folkman, Lazarus, Gruen, & DeLongis, 1986). Coping behaviours typically fall under two broad categories; emotion-focused coping, which involves directing attention away from the stressor, and problem-based coping which directs attention towards the stressor. Early knowledge of coping strategies in people with CF was based on rudimentary descriptions (Moise, Drotar, Doershuk, & Stern, 1987; Pinkerton, Duncan, Trauer, Hodson, & Batten, 1985; Strauss & Wellisch, 1981); yet, even to date, this research area remains limited. Subsequent studies have attempted to discern the degree to which coping accounts for variance in HRQOL. For instance, Goldbeck, Schmitz, and Buck (1999) found that as much as 56% of the variance in HRQOL was accounted for by coping and treatment burden. Likewise, Staab et al. (1998) concluded that an additional 12% of the variance in HRQOL, over and above disease severity and lung function, was explained by coping. Despite their merit, these studies examined global measures of QOL which may conceal specific effects. In fact, Abbott et al. (2008) found that coping had a negligible effect on symptomology and physical functioning domains, whereas it was strongly related to the psychosocial facets. That said, the combined measures of coping again resulted in a lack of specificity. Rationale Previous research has largely utilized composite measures of both coping and HRQOL. However, people with CF are likely to employ a range of coping approaches to manage
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their complex condition and as with QOL, certain coping approaches may be more relevant than others. Therefore, it is important to distinguish the specific coping approaches which are associated with greater emotional and social QOL as these may ultimately inform clinical care. Method Participants
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One hundred and twenty-two participants were recruited through an online CF support group. Participants were aged between 18 and 63 years (M = 29, SD = 8.349) and reported a diagnosis of CF. Females were predominant in the sample (n = 86; 70.5%). Lung function percentages ranged from 20 to 118% (M = 68.08, SD = 22.51). Participant characteristics are provided in Table 1. Measures Demographic and clinical controls Lung function was measured by self-reported percentage predicted forced expiratory volume (FEV1%). Given the gender differences in physical health and perceived QOL, adjustment was made for these factors when considering the relationship between coping and HRQOL. CF Questionnaire-Revised (CFQ-R) (Quittner et al., 2012) The CFQ-R is a 50-item disease-specific instrument designed to measure the impact of CF on nine QOL domains. Questions are scored on a four-point Likert scale with Table 1.
Shows basic descriptive of demographic, clinical, coping and QOL variables.
Females/Males
Item Age Lung function % Distraction Substance Venting Denial Disengagement Humour Self-blame Emotional support Instrumental support Religion Planning Reframing Acceptance Active coping Emotional QOL Social QOL
70.5% (N = 86)
29.5% (N = 36)
Mean
SD
28.9 68 4.81 2.50 3.79 2.55 2.93 4.25 4.03 4.64 3.98 3.89 4.94 4.79 5.57 5.09 61.8 43.4
8.34 22.5 1.60 1.27 1.44 .98 1.44 1.75 1.77 1.96 1.73 2.10 2.03 1.92 1.84 1.95 24.35 15.53
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standardized scores ranging from 0 to 100 for each subscale. Higher scores indicate better HRQOL. For the purpose of this study, only emotional and social QOL were examined since studies have demonstrated a more consistent relationship between coping with emotional and social QOL than physical health (Abbott et al., 2008). The CFQ-R questionnaire was shown to have high internal consistency for both subscales – ‘Emotion’ (α = .81) and ‘Social’ (α = .72).
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Brief COPE scale (Carver, 1997) The Brief COPE is a self-completed questionnaire comprising of 28 items within 14 subscales with 2 items per subscale: (1) active coping, (2) planning, (3) use of instrumental support, (4) use of emotional support, (5) venting, (6) behavioural disengagement, (7) self-distraction, (8) self-blame, (9) positive reframing, (10) humour, (11) denial, (12) acceptance, (13) religion and (14) substance use. The instrument employs a four-point Likert scale: 1 = ‘I haven’t been doing this at all’ to 4 = ‘I’ve been doing this a lot’ which is used to measure the frequency of each coping subscale. The internal consistency of the brief COPE scale is satisfactory with an alpha coefficient of α = 0.75. Statistical analysis Descriptive statistics were computed in IBM SPSS Statistics 21. One multivariate model was specified in Mplus 7.0 (Muthén & Muthén, 2010) to test the association between the 14 independent variables (i.e. coping subscales) and 2 dependent variables (i.e. emotional and social QOL) after adjusting for gender and lung function. The model was bootstrapped with 500 resamples and estimated using the maximum likelihood estimator. Bootstrapping provides greater power to detect effects in small samples while maintaining control over the Type I error rate (MacKinnon, Lockwood, Hoffman, West, & Sheets, 2002; Williams & MacKinnon, 2008). Results The results of the bivariate correlation matrix revealed correlation coefficients ranging from trivial to medium in strength (0.1–0.6). Results of the correlation matrix are presented in Table 2. The results showed a significant, but negative association between distraction coping with both emotional (b = −0.193, p = 0.045, 95% Cl= −5.530 to −0.103) and social QOL (b = −0.285, p = 0.017, 95% Cl = −4.178 to −0.463). Higher substance use (b = −0.186, p = 0.05, 95% Cl= −6.900 to −0.048) and disengagement (b = −0.352, p = 0.001, 95% Cl= −9.087 to −2.426) was significantly associated with lower emotional QOL. On the other hand, greater religious coping (b = 0.204, p = 0.02, 95% Cl= 0.379 to 4.221), instrumental support (b = 0.221, p = 0.03, 95% Cl= 0.341–5.705) and acceptance (b = 0.236, p = 0.024, 95% Cl= 0.429–5.573) was positively associated with emotion QOL. Active coping was positively associated with social QOL (b = 0.259, p = 0.046, 95% Cl= 0.090–3.495). None of the remaining coping strategies were found to be associated with either of the QOL subscales. The results are presented in Table 3. Discussion Due to improvements in treatment outcomes, people with CF now have a longer life expectancy than ever before. This has led to interest in the psychological burden of CF
1
1
.074
Distr Subst
.401** .070 1
Vent
Bivariate correlations.
.199* .213* .216* 1
Denial .138 .403** .106 .363** 1
Disen
Self-b
Relig
Plan
Refr
.305** .207* .382** .252** .077 .062 −.006 −.058 .451** .169 .481** .151 .123 .021 .059 .052 .013 −.121 −.073 −.164 .150 −.005 .061 .209* .140 −.103 .202* −.047 .647** .259** .430** .296** 1 .335** .434** .330* 1 .200* .357** 1 .343** 1
Emot. S Instr. S
.159 .325** .363** .152 .188* −.151 .091 .364** .504** .021 .310** .005 .148 .432** .006 1 −.059 .102 1 .066 1
Hum
Acti. C
.278** .409** −.138 −.014 .238** .411** −.174 −.006 −.120 −.222** .221* .153 −.020 .053 .377** .337** .168 .429** .319** .205* .385** .667** .473** .424** 1 .332** 1
Accept
Social −.234** .078 −.083 −.092 −.162 −.173 −.044 −.226* −.253** −.011 −.069 −.048 −.154 .038 .207* 1
Emot −.253** −.381** −.184* −.326** −.595** −.011 −.486** .062 .055 .157 .023 .115 .039 .147 1
Notes: Distr = Distraction, Subst = Substance, Vent = Venting, Disen = Disengagement, Hum = Humour, Self-b = Self-blame, Emot. S = Emotion support, Instr. S = Instrumental support, Relig = Religion, Plan = Planning, Refr = Reframing, Accept = Acceptance, Acti. C = Active coping, Emot = Emotion. *p < .05; **p < .001.
Distr Subst Vent Denial Disen Hum Self-b Emot. S Instr. S Relig Plan Refr Accept Acti. C Emot Social
Table 2.
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Table 3.
Regression results of coping on emotional and social QOL.
Items
Emotion
Social β (95% CI)
Distraction Substance Venting Denial Disengagement
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Humour Self-blame Emotional support Instrumental support Religion Planning Reframing Acceptance Active coping
−.193* (−5.530 to −.103) −0.186* (−6.900 to −.048) −.061 (−.374 to 1.703) −.077 (−6.244 to 2.525) −.352* (−9.087 to −2.426) .124 (−.383 to 3.974) −.157 (−4.874 to.561) .187 (−.330 to 4.807) .221* (.341 to 5.705) .204* (.379 to 4.221) .099 (−1.361 to 3.715) .060 (−1.831 to 3.354) .236* (0.429 to 5.573) .151 (−.869 to 4.612)
−.285* (−4.178 to 0.189 (−.842 to .075 (−2.025 to −.017 (−3.254 to −.150 (−3.422 to −.157 (−2.865 to .134 (−.692 to −.045 (−2.595 to .267 (.328 to .151 (−.569 to −.019 (−1.826 to −.048 (−2.107 to .088 (−2.656 to .259* (.090 to
−.463) 4.763) 3.427) 2.794) .684) .454) 2.736) 1.997) 4.418) 2.476) 1.580) 1.432) 1.406) 3.495)
Note: β = Beta coefficient, 95% CI = 95% Confidence intervals. *p < 0.05.
and the factors that can promote psychosocial well-being. The purpose of the current study was to extend the existing literature by examining a wider spectrum of coping styles than has previously been assessed in CF populations. The findings revealed that certain coping strategies were associated with enhanced QOL while others were related to poorer QOL outcomes. Furthermore, some coping approaches were found to be more relevant to different facets of QOL than others with a greater number of associations noted between coping and emotional than social QOL. These findings corroborate studies both in CF and other chronic illness samples which suggest that the use of coping strategies involving efforts to divert attention away from the illness are detrimental to well-being and QOL outcomes (Abbott et al., 2008; Endler, Kocovski, & Macrodimitris, 2001). Passive or avoidance coping strategies (akin to disengagement, self-distraction, substance use) which prevent individuals from adequately attending to their condition have also been shown to be associated with anxiety and depression. This may help explain the findings of the current study which indicated that greater use of substance, distraction and disengagement coping was associated with lower emotional QOL (Benson et al., n.d.; Klein, Turvey, & Pies, 2007). As Abbott et al. (2008) suggest, distraction is often employed as a method of escapism and a
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means of avoiding ‘feeling different’ from their peers. Yet, ‘feeling different’ in the first instance may underlie the negative appraisal of their social and emotional QOL and prompt the use of this strategy. In relation to disengagement, previous studies have reported that this may represent a diversion from the negative aspects of living with certain illnesses (Kwan et al., 2014). Another significant finding to emerge was the negative association between substance use and emotional QOL. This finding aligns with research which reports that emotional disengagement is commonly reported amongst individuals who experience substance abuse (Morrissette, 2010). This is likely to be due to alcohol consumption being a means of avoiding facing the strain of living with chronic illness. The current study also uncovered a link between religious coping and positive QOL outcomes. These findings correspond with Reynolds et al. (2013) suggestion that positive spiritual coping offers a unique cognitive framework which provides the means in which to manage the chronicity of the disease. Furthermore, spiritually related emotions which often accompany this form of coping (e.g. hopefulness, a sense of peace) may also facilitate improved emotional QOL via reduced depression and anxiety as has been noted in youths with CF and other pulmonary disorders (Reynolds et al., 2013; Shelton, Linfield, Carter & Morton, 2005). In addition, higher active coping predicted greater social QOL which may reflect the fact that active coping is also associated with other positive approaches such as optimism (Mosher, 2006). Acceptance also has a role in the psychological functioning of adolescents with CF and other chronic conditions by relieving the symptoms of anxiety and depression often implicated in poorer disease management (Casier et al., 2011). Finally, in relation to instrumental support, the findings corroborate a large body of existing research which illustrates the benefits of social support (Pakenham, Chiu, Bursnall, & Cannon, 2007; Maslow, Haydon, McRee, Ford, & Halpern, 2011). Indeed, when individuals with CF disclose their condition to peers, this can often reduce negative peer evaluations (Berlin, Sass, Hobart Davies, Jandrisevits, & Hains, 2005), perhaps enhancing perceived emotional QOL. Contribution and implications While literature surrounding coping is vast, this has not commonly been researched in relation to CF. The main contribution of the research lies in the ability to extend our knowledge of a relatively understudied area by illustrating the effects of a range of coping strategies on QOL in people with CF. Given the heavy burden of CF, psychosocial well-being is now an integral component of HRQOL research; yet, there remains an absence of health care provision which caters for the psychological needs of people with CF. Therefore, the findings of this study have significant applied value, particularly in counselling settings. Since coping behaviours are quantifiable and adaptable, these can reasonably be modified to enhance positive coping strategies as part of routine clinical care which may ultimately improve QOL for adults with CF. It is important to understand which style of coping is most beneficial for the mental and physical health of these individuals as this can help inform the development of more individualized care models. This may involve educating individuals about positive steps they can take to enhance well-being and QOL including adopting a more proactive role in the management of their condition. Counselling should also help individuals gain greater acceptance of their conditions which may again facilitate improved HRQOL. Research suggests that individuals may also benefit physically as a result of improvements in psychological well-being (Bregnballe et al., 2008).
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Future research
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While the current study identified several individual coping styles which were associated with emotional and social QOL, it is unlikely that such coping approaches are employed in isolation. It is more probable that numerous different styles are applied simultaneously or different strategies are used over the course of the illness. Future studies should look to identify different combinations of approaches which are associated with the poorest outcomes. It is also important to consider how these coping styles vary as the condition improves or deteriorates (Abbott et al., 2008). This will require regular reassessment in order to monitor the fluctuations in the condition.
Limitations A number of weaknesses need to be considered. Firstly, those who access online support may represent a unique sample of individuals with CF; so, the sample itself may not be fully representative of the wider CF community. The inability to ascertain how well the sample characteristics align with the national averages means that caution should be exercised in the interpretation of the findings. A further limitation relates to the failure to assess additional contributors to QOL such as life events, work, family, relationships and social networks. Other illnesses which may affect the participants’ QOL and health were also not assessed in the questionnaire, for example, CF related diabetes, osteoporosis or a lung transplant which are common among CF sufferers. These conditions may act as confounding variables when assessing HRQOL. Furthermore, due to the cross-sectional nature of the study, a definitive temporal order cannot be established. Consequently, it is not possible to determine whether specific coping approaches precede or supersede emotional and social QOL outcomes. Indeed, it is equally probable that individuals who struggle with emotional or social functioning may proceed to implement certain coping strategies more frequently. Finally, non-CF specific measures are limited since they fail to assess coping attributes that may be specific to CF. Going forward, measures should be adapted or created for use within the CF population to facilitate investigation of CF specific coping (Van Damme, Crombez, Van Houdenhove, Mariman, & Michielsen, 2006).
Conclusion Despite a great deal of medical progress, little is known about the ways in which individuals with CF manage the new aspect of growing old with CF (Edwards, Clarke, & Greenop, 2013). While numerous coping strategies have been identified in other chronic illness populations, these are more limited in CF samples (Pfeffer, Pfeffer, & Hodson, 2003) and when assessed, they are typically aggregated. Since coping has emerged as an important factor in explaining emotional and social QOL, these findings hold potential for addressing an unmet psychological need within this population. Considering that coping behaviours are modifiable, future programmes should focus on educating individuals to employ coping strategies which may improve QOL in adults with CF.
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Muthén, L. K., & Muthén, B. O. (2010). Mplus User’s Guide (5th ed.). Los Angeles, CA: Author. Orenstein, D.M., Winnie, G. B., & Altman, H. (2002). Cystic fibrosis: A 2002 update. The Journal of Pediatrics, 140, 156–164. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/ 11865265 Pakenham, K. I., Chiu, J., Bursnall, S., & Cannon, T. (2007). Relations between social support, appraisal and coping and both positive and negative outcomes in young carers. Journal of Health Psychology, 12, 89–102. Pfeffer, P. E., Pfeffer, J. M., & Hodson, M. E. (2003). The psychosocial and psychiatric side of CF in adolescents and adults. Journal of Cystic Fibrosis, 2, 61–68. Pinkerton, P., Duncan, F., Trauer, T., Hodson, M., & Batten, J. (1985). Cystic fibrosis in adult life: A study of coping patterns. The Lancet, 326, 761–763. Retrieved from http://www.thelancet. com/journals/a/article/PIIS0140-6736(85)90638-5/fulltext Quittner, A. L., Sawicki, G. S., McMullen, A., Rasouliyan, L., Pasta, D. J., Yegin, A., & Konstan, M. W. (2012). Psychometric evaluation of the CF Questionnaire-revised in a national sample. Quality of Life Research, 21, 1267–1278. Reynolds, N., Mrug, S., Britton, L., Guion, K., Wolfe, K., & Gutierrez, H. (2013). Spiritual coping predicts 5-year health outcomes in adolescents with cystic fibrosis. Journal of Cystic Fibrosis, 13, 593–600. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/24534722 Riekert, K. A., Bartlett, S. J., Boyle, M. P., Krishnan, J. A., & Rand, C. S. (2007). The association between depression, lung function, and health-related quality of life among adults with cystic fibrosis. CHEST Journal, 132, 231–237. Retrieved from http://journal.publications.chest net.org/article.aspx?articleid=1085240 Royce, F., & Carl, J. (2011). Health-related quality of life in cystic fibrosis. Current Opinion in Pediatrics. Retrieved from http://journals.lww.com/co-pediatrics/Abstract/2011/10000/ Health_related_quality_of_life_in_cystic_fibrosis.8.aspx Sawicki, G. S., Sellers, D. E., & Robinson, W. M. (2009). High treatment burden in adults with cystic fibrosis: Challenges to disease self-management. Journal of Cystic Fibrosis, 8, 91–96. Retrieved from http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2680350&tool= pmcentrez&rendertype=abstract Schechter, M. S., & Margolis, P. A. (1998). Relationship between socioeconomic status and disease severity in cystic fibrosis. The Journal of Pediatrics, 132, 260–264. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/9506638 Selvadurai, H., Blimkie, C., Meyers, N., Mellis, C., Cooper, P., & Van Asperen, P. (2002). Randomized controlled study of in-hospital exercise training programs in children with cystic fibrosis. Pediatric Pulmonology, 33, 194–200. Shelton, S., Linfield, K., Carter, B., & Morton, R. (2005). Spirituality and coping with chronic life-threatening pediatric illness: Cystic fibrosis and severe asthma. Proceedings of the American Thoracic Society, 2, 520. Staab, D., Wenninger, K., Gebert, N., Rupprath, K., Bisson, S., Trettin, M., & Paul, K D (1998). Quality of life in patients with cystic fibrosis and their parents: What is important besides disease severity? Thorax, 53, 727–731. Retrieved from http://www.pubmedcentral.nih.gov/article render.fcgi?artid=1745310&tool=pmcentrez&rendertype=abstract Strauss, G. D., & Wellisch, D. K. (1981). Psychosocial adaptation in older cystic fibrosis patients. Journal of Chronic Diseases, 34, 141–146. Retrieved from http://www.sciencedirect.com/sci ence/article/pii/0021968181900242 Szyndler, J. E., Towns, S. J., van Asperen, P. P., & McKay, K. O. (2005). Psychological and family functioning and quality of life in adolescents with cystic fibrosis. Journal of Cystic Fibrosis, 4, 135–144. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/15914095 Van Damme, S., Crombez, G., Van Houdenhove, B., Mariman, A., & Michielsen, W. (2006). Well-being in patients with chronic fatigue syndrome: The role of acceptance. Journal of Psychosomatic Research, 61, 595–599. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/ 17084136 Williams, J., & MacKinnon, D. P. (2008). Resampling and distribution of the product methods for testing indirect effects in complex models. Structural Equation Modeling: A Multidisciplinary Journal, 15, 23–51. Retrieved from http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid= 2825896&tool=pmcentrez&rendertype=abstract
Psychology, Health & Medicine Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/cphm20
Coping styles in adults with cystic fibrosis: implications for emotional and social quality of life a
a
a
Rachel Mc Hugh , Danielle Mc Feeters , David Boyda & Siobhan a
O’Neill a
School of Psychology, Faculty of Health and Life Sciences, Ulster University, Magee Campus, Northern Ireland, Londonderry, Co. Derry, BT48 7JL, United Kingdom Published online: 18 Mar 2015.
Click for updates To cite this article: Rachel Mc Hugh, Danielle Mc Feeters, David Boyda & Siobhan O’Neill (2015): Coping styles in adults with cystic fibrosis: implications for emotional and social quality of life, Psychology, Health & Medicine, DOI: 10.1080/13548506.2015.1020317 To link to this article: http://dx.doi.org/10.1080/13548506.2015.1020317
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Psychology, Health & Medicine, 2015 http://dx.doi.org/10.1080/13548506.2015.1020317
Coping styles in adults with cystic fibrosis: implications for emotional and social quality of life Rachel Mc Hugh*,1, Danielle Mc Feeters1, David Boyda and Siobhan O’Neill School of Psychology, Faculty of Health and Life Sciences, Ulster University, Magee Campus, Northern Ireland, Londonderry, Co. Derry, BT48 7JL, United Kingdom
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(Received 17 November 2014; accepted 13 February 2015) As life expectancy increases, interest has grown surrounding the factors that may influence quality of life (QOL) for people with cystic fibrosis (CF). The aim of the current study was to examine which specific coping styles were positively or negatively associated with social and emotional QOL in a CF sample. One hundred and twenty-two respondents aged 18 and over were recruited through an online support group. Respondents completed the ‘CF Questionnaire-Revised (CFQ-R)’ and the ‘Brief COPE’. The CFQ-R is a disease-specific instrument designed to measure the impact of CF on nine QOL domains and the Brief COPE is a 28 item questionnaire which assesses 14 coping scales. A multivariate regression model revealed that higher substance abuse and disengagement was associated with lower emotional QOL whereas greater use of religion, instrumental coping and acceptance was positively associated with emotional QOL. Active coping was linked to better social QOL and a negative association was reported between distraction coping with both emotional and social domains. Given the burden of CF, ascertaining which factors enhance or diminish emotion and social well-being is now an integral component of QOL research. The current findings may therefore have value in informing clinical interventions which aim to cater for the psychological needs of individuals with CF. Keywords: quality of life; coping; emotional; social; cystic fibrosis (CF)
Introduction Cystic fibrosis (CF) is a chronic life limiting, genetic condition caused by a single faulty gene. This gene results in the production of excess thickened mucus, often leading to blockages of the respiratory and digestive systems (Davis, 2006). As the illness progresses, this can give rise to subsequent complications including recurrent lung infections, malnutrition and CF-related diabetes (Culhane, George, Pearo, & Spoede, 2013; Mackie, Thornton, & Edenborough, 2003). A new breakthrough drug called ‘Kalydeco’, along with advances in treatment management strategies has led to prolonged life expectancy (Bellis et al., 2007; Cohen-Cymberknoh, Shoseyov, & Kerem, 2011). Nonetheless, CF symptoms and the intensive treatment regimen which accompanies the illness continues to have a debilitating effect on the daily life of the individual (Sawicki, Sellers, & Robinson, 2009). This has led to a need for an increased understanding of the ongoing psychological burden associated with CF. Traditionally, morbidity and mortality rates were utilized as a measure of disease burden; however, attention is now being *Corresponding author. Email: [email protected] 1 These authors contributed equally to this work. © 2015 Taylor & Francis
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directed towards aspects of psychological adjustment (Szyndler, Towns, van Asperen, & McKay, 2005). As such, health-related quality of life (HRQOL) is increasingly examined as a means of assessing disease burden as well as supplementing information acquired from clinical outcome measures (Abbott et al., 2011; Ashish, Shaw, McShane, Ledson, & Walshaw, 2012; Royce & Carl, 2011). A host of studies have investigated the biological and physiological factors which influence CF survival rates (Britto et al., 2002; Curtis, Burke, Kassner, & Aitken, 1997; Orenstein, Winnie, & Altman, 2002; Schechter & Margolis, 1998). However, comparably fewer studies have attempted to ascertain contributors to quality of life (QOL) (Abbott, Hart, Morton, Gee, & Conway, 2008). To date, both demographic and clinical factors have been implicated in HRQOL for people with CF. Studies have consistently demonstrated a disparity in gender with females typically encountering a poorer prognosis in terms of both general health and life expectancy. Whilst the cause of the gender gap remains to be determined, some possible explanations include the earlier acquisition of Paeruginosa amongst females (Demko, Byard, & Davis, 1995), an increased prevalence of CF-related diabetes (Adler, Shine, Haworth, Leelarathna, & Bilton, 2011), reduced activity levels (Selvadurai et al., 2002), as well as poorer mental and nutritional health (ArringtonSanders et al., 2006; Kerem, Reisman, Corey, Canny & Levison, 1992). In terms of clinical factors, higher lung function percentages are generally associated with enhanced QOL outcomes (Bradley, McAlister, & Elborn, 2001; Gee, Abbott, Conway, Etherington, & Webb, 2003; Riekert, Bartlett, Boyle, Krishnan, & Rand, 2007). Furthermore, studies have noted increases in reported QOL in conjunction with improvements in lung function (Gee, Abbott, Conway, Etherington, & Webb, 2000). Whilst these features have helped elucidate on potential contributors to QOL, a substantial degree of the variance still remains to be accounted for (Gee et al., 2005). As such, focus has increasingly been directed towards psychological and psychosocial factors as possible explanations. Several studies have concluded that coping mechanisms can buffer the effects of stressors on psychological adjustment (Ano & Vasconcelles, 2005; Elliot, Thrash, & Murayama, 2011; Folkman, Lazarus, Gruen, & DeLongis, 1986). Coping behaviours typically fall under two broad categories; emotion-focused coping, which involves directing attention away from the stressor, and problem-based coping which directs attention towards the stressor. Early knowledge of coping strategies in people with CF was based on rudimentary descriptions (Moise, Drotar, Doershuk, & Stern, 1987; Pinkerton, Duncan, Trauer, Hodson, & Batten, 1985; Strauss & Wellisch, 1981); yet, even to date, this research area remains limited. Subsequent studies have attempted to discern the degree to which coping accounts for variance in HRQOL. For instance, Goldbeck, Schmitz, and Buck (1999) found that as much as 56% of the variance in HRQOL was accounted for by coping and treatment burden. Likewise, Staab et al. (1998) concluded that an additional 12% of the variance in HRQOL, over and above disease severity and lung function, was explained by coping. Despite their merit, these studies examined global measures of QOL which may conceal specific effects. In fact, Abbott et al. (2008) found that coping had a negligible effect on symptomology and physical functioning domains, whereas it was strongly related to the psychosocial facets. That said, the combined measures of coping again resulted in a lack of specificity. Rationale Previous research has largely utilized composite measures of both coping and HRQOL. However, people with CF are likely to employ a range of coping approaches to manage
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their complex condition and as with QOL, certain coping approaches may be more relevant than others. Therefore, it is important to distinguish the specific coping approaches which are associated with greater emotional and social QOL as these may ultimately inform clinical care. Method Participants
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One hundred and twenty-two participants were recruited through an online CF support group. Participants were aged between 18 and 63 years (M = 29, SD = 8.349) and reported a diagnosis of CF. Females were predominant in the sample (n = 86; 70.5%). Lung function percentages ranged from 20 to 118% (M = 68.08, SD = 22.51). Participant characteristics are provided in Table 1. Measures Demographic and clinical controls Lung function was measured by self-reported percentage predicted forced expiratory volume (FEV1%). Given the gender differences in physical health and perceived QOL, adjustment was made for these factors when considering the relationship between coping and HRQOL. CF Questionnaire-Revised (CFQ-R) (Quittner et al., 2012) The CFQ-R is a 50-item disease-specific instrument designed to measure the impact of CF on nine QOL domains. Questions are scored on a four-point Likert scale with Table 1.
Shows basic descriptive of demographic, clinical, coping and QOL variables.
Females/Males
Item Age Lung function % Distraction Substance Venting Denial Disengagement Humour Self-blame Emotional support Instrumental support Religion Planning Reframing Acceptance Active coping Emotional QOL Social QOL
70.5% (N = 86)
29.5% (N = 36)
Mean
SD
28.9 68 4.81 2.50 3.79 2.55 2.93 4.25 4.03 4.64 3.98 3.89 4.94 4.79 5.57 5.09 61.8 43.4
8.34 22.5 1.60 1.27 1.44 .98 1.44 1.75 1.77 1.96 1.73 2.10 2.03 1.92 1.84 1.95 24.35 15.53
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standardized scores ranging from 0 to 100 for each subscale. Higher scores indicate better HRQOL. For the purpose of this study, only emotional and social QOL were examined since studies have demonstrated a more consistent relationship between coping with emotional and social QOL than physical health (Abbott et al., 2008). The CFQ-R questionnaire was shown to have high internal consistency for both subscales – ‘Emotion’ (α = .81) and ‘Social’ (α = .72).
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Brief COPE scale (Carver, 1997) The Brief COPE is a self-completed questionnaire comprising of 28 items within 14 subscales with 2 items per subscale: (1) active coping, (2) planning, (3) use of instrumental support, (4) use of emotional support, (5) venting, (6) behavioural disengagement, (7) self-distraction, (8) self-blame, (9) positive reframing, (10) humour, (11) denial, (12) acceptance, (13) religion and (14) substance use. The instrument employs a four-point Likert scale: 1 = ‘I haven’t been doing this at all’ to 4 = ‘I’ve been doing this a lot’ which is used to measure the frequency of each coping subscale. The internal consistency of the brief COPE scale is satisfactory with an alpha coefficient of α = 0.75. Statistical analysis Descriptive statistics were computed in IBM SPSS Statistics 21. One multivariate model was specified in Mplus 7.0 (Muthén & Muthén, 2010) to test the association between the 14 independent variables (i.e. coping subscales) and 2 dependent variables (i.e. emotional and social QOL) after adjusting for gender and lung function. The model was bootstrapped with 500 resamples and estimated using the maximum likelihood estimator. Bootstrapping provides greater power to detect effects in small samples while maintaining control over the Type I error rate (MacKinnon, Lockwood, Hoffman, West, & Sheets, 2002; Williams & MacKinnon, 2008). Results The results of the bivariate correlation matrix revealed correlation coefficients ranging from trivial to medium in strength (0.1–0.6). Results of the correlation matrix are presented in Table 2. The results showed a significant, but negative association between distraction coping with both emotional (b = −0.193, p = 0.045, 95% Cl= −5.530 to −0.103) and social QOL (b = −0.285, p = 0.017, 95% Cl = −4.178 to −0.463). Higher substance use (b = −0.186, p = 0.05, 95% Cl= −6.900 to −0.048) and disengagement (b = −0.352, p = 0.001, 95% Cl= −9.087 to −2.426) was significantly associated with lower emotional QOL. On the other hand, greater religious coping (b = 0.204, p = 0.02, 95% Cl= 0.379 to 4.221), instrumental support (b = 0.221, p = 0.03, 95% Cl= 0.341–5.705) and acceptance (b = 0.236, p = 0.024, 95% Cl= 0.429–5.573) was positively associated with emotion QOL. Active coping was positively associated with social QOL (b = 0.259, p = 0.046, 95% Cl= 0.090–3.495). None of the remaining coping strategies were found to be associated with either of the QOL subscales. The results are presented in Table 3. Discussion Due to improvements in treatment outcomes, people with CF now have a longer life expectancy than ever before. This has led to interest in the psychological burden of CF
1
1
.074
Distr Subst
.401** .070 1
Vent
Bivariate correlations.
.199* .213* .216* 1
Denial .138 .403** .106 .363** 1
Disen
Self-b
Relig
Plan
Refr
.305** .207* .382** .252** .077 .062 −.006 −.058 .451** .169 .481** .151 .123 .021 .059 .052 .013 −.121 −.073 −.164 .150 −.005 .061 .209* .140 −.103 .202* −.047 .647** .259** .430** .296** 1 .335** .434** .330* 1 .200* .357** 1 .343** 1
Emot. S Instr. S
.159 .325** .363** .152 .188* −.151 .091 .364** .504** .021 .310** .005 .148 .432** .006 1 −.059 .102 1 .066 1
Hum
Acti. C
.278** .409** −.138 −.014 .238** .411** −.174 −.006 −.120 −.222** .221* .153 −.020 .053 .377** .337** .168 .429** .319** .205* .385** .667** .473** .424** 1 .332** 1
Accept
Social −.234** .078 −.083 −.092 −.162 −.173 −.044 −.226* −.253** −.011 −.069 −.048 −.154 .038 .207* 1
Emot −.253** −.381** −.184* −.326** −.595** −.011 −.486** .062 .055 .157 .023 .115 .039 .147 1
Notes: Distr = Distraction, Subst = Substance, Vent = Venting, Disen = Disengagement, Hum = Humour, Self-b = Self-blame, Emot. S = Emotion support, Instr. S = Instrumental support, Relig = Religion, Plan = Planning, Refr = Reframing, Accept = Acceptance, Acti. C = Active coping, Emot = Emotion. *p < .05; **p < .001.
Distr Subst Vent Denial Disen Hum Self-b Emot. S Instr. S Relig Plan Refr Accept Acti. C Emot Social
Table 2.
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Table 3.
Regression results of coping on emotional and social QOL.
Items
Emotion
Social β (95% CI)
Distraction Substance Venting Denial Disengagement
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Humour Self-blame Emotional support Instrumental support Religion Planning Reframing Acceptance Active coping
−.193* (−5.530 to −.103) −0.186* (−6.900 to −.048) −.061 (−.374 to 1.703) −.077 (−6.244 to 2.525) −.352* (−9.087 to −2.426) .124 (−.383 to 3.974) −.157 (−4.874 to.561) .187 (−.330 to 4.807) .221* (.341 to 5.705) .204* (.379 to 4.221) .099 (−1.361 to 3.715) .060 (−1.831 to 3.354) .236* (0.429 to 5.573) .151 (−.869 to 4.612)
−.285* (−4.178 to 0.189 (−.842 to .075 (−2.025 to −.017 (−3.254 to −.150 (−3.422 to −.157 (−2.865 to .134 (−.692 to −.045 (−2.595 to .267 (.328 to .151 (−.569 to −.019 (−1.826 to −.048 (−2.107 to .088 (−2.656 to .259* (.090 to
−.463) 4.763) 3.427) 2.794) .684) .454) 2.736) 1.997) 4.418) 2.476) 1.580) 1.432) 1.406) 3.495)
Note: β = Beta coefficient, 95% CI = 95% Confidence intervals. *p < 0.05.
and the factors that can promote psychosocial well-being. The purpose of the current study was to extend the existing literature by examining a wider spectrum of coping styles than has previously been assessed in CF populations. The findings revealed that certain coping strategies were associated with enhanced QOL while others were related to poorer QOL outcomes. Furthermore, some coping approaches were found to be more relevant to different facets of QOL than others with a greater number of associations noted between coping and emotional than social QOL. These findings corroborate studies both in CF and other chronic illness samples which suggest that the use of coping strategies involving efforts to divert attention away from the illness are detrimental to well-being and QOL outcomes (Abbott et al., 2008; Endler, Kocovski, & Macrodimitris, 2001). Passive or avoidance coping strategies (akin to disengagement, self-distraction, substance use) which prevent individuals from adequately attending to their condition have also been shown to be associated with anxiety and depression. This may help explain the findings of the current study which indicated that greater use of substance, distraction and disengagement coping was associated with lower emotional QOL (Benson et al., n.d.; Klein, Turvey, & Pies, 2007). As Abbott et al. (2008) suggest, distraction is often employed as a method of escapism and a
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means of avoiding ‘feeling different’ from their peers. Yet, ‘feeling different’ in the first instance may underlie the negative appraisal of their social and emotional QOL and prompt the use of this strategy. In relation to disengagement, previous studies have reported that this may represent a diversion from the negative aspects of living with certain illnesses (Kwan et al., 2014). Another significant finding to emerge was the negative association between substance use and emotional QOL. This finding aligns with research which reports that emotional disengagement is commonly reported amongst individuals who experience substance abuse (Morrissette, 2010). This is likely to be due to alcohol consumption being a means of avoiding facing the strain of living with chronic illness. The current study also uncovered a link between religious coping and positive QOL outcomes. These findings correspond with Reynolds et al. (2013) suggestion that positive spiritual coping offers a unique cognitive framework which provides the means in which to manage the chronicity of the disease. Furthermore, spiritually related emotions which often accompany this form of coping (e.g. hopefulness, a sense of peace) may also facilitate improved emotional QOL via reduced depression and anxiety as has been noted in youths with CF and other pulmonary disorders (Reynolds et al., 2013; Shelton, Linfield, Carter & Morton, 2005). In addition, higher active coping predicted greater social QOL which may reflect the fact that active coping is also associated with other positive approaches such as optimism (Mosher, 2006). Acceptance also has a role in the psychological functioning of adolescents with CF and other chronic conditions by relieving the symptoms of anxiety and depression often implicated in poorer disease management (Casier et al., 2011). Finally, in relation to instrumental support, the findings corroborate a large body of existing research which illustrates the benefits of social support (Pakenham, Chiu, Bursnall, & Cannon, 2007; Maslow, Haydon, McRee, Ford, & Halpern, 2011). Indeed, when individuals with CF disclose their condition to peers, this can often reduce negative peer evaluations (Berlin, Sass, Hobart Davies, Jandrisevits, & Hains, 2005), perhaps enhancing perceived emotional QOL. Contribution and implications While literature surrounding coping is vast, this has not commonly been researched in relation to CF. The main contribution of the research lies in the ability to extend our knowledge of a relatively understudied area by illustrating the effects of a range of coping strategies on QOL in people with CF. Given the heavy burden of CF, psychosocial well-being is now an integral component of HRQOL research; yet, there remains an absence of health care provision which caters for the psychological needs of people with CF. Therefore, the findings of this study have significant applied value, particularly in counselling settings. Since coping behaviours are quantifiable and adaptable, these can reasonably be modified to enhance positive coping strategies as part of routine clinical care which may ultimately improve QOL for adults with CF. It is important to understand which style of coping is most beneficial for the mental and physical health of these individuals as this can help inform the development of more individualized care models. This may involve educating individuals about positive steps they can take to enhance well-being and QOL including adopting a more proactive role in the management of their condition. Counselling should also help individuals gain greater acceptance of their conditions which may again facilitate improved HRQOL. Research suggests that individuals may also benefit physically as a result of improvements in psychological well-being (Bregnballe et al., 2008).
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Future research
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While the current study identified several individual coping styles which were associated with emotional and social QOL, it is unlikely that such coping approaches are employed in isolation. It is more probable that numerous different styles are applied simultaneously or different strategies are used over the course of the illness. Future studies should look to identify different combinations of approaches which are associated with the poorest outcomes. It is also important to consider how these coping styles vary as the condition improves or deteriorates (Abbott et al., 2008). This will require regular reassessment in order to monitor the fluctuations in the condition.
Limitations A number of weaknesses need to be considered. Firstly, those who access online support may represent a unique sample of individuals with CF; so, the sample itself may not be fully representative of the wider CF community. The inability to ascertain how well the sample characteristics align with the national averages means that caution should be exercised in the interpretation of the findings. A further limitation relates to the failure to assess additional contributors to QOL such as life events, work, family, relationships and social networks. Other illnesses which may affect the participants’ QOL and health were also not assessed in the questionnaire, for example, CF related diabetes, osteoporosis or a lung transplant which are common among CF sufferers. These conditions may act as confounding variables when assessing HRQOL. Furthermore, due to the cross-sectional nature of the study, a definitive temporal order cannot be established. Consequently, it is not possible to determine whether specific coping approaches precede or supersede emotional and social QOL outcomes. Indeed, it is equally probable that individuals who struggle with emotional or social functioning may proceed to implement certain coping strategies more frequently. Finally, non-CF specific measures are limited since they fail to assess coping attributes that may be specific to CF. Going forward, measures should be adapted or created for use within the CF population to facilitate investigation of CF specific coping (Van Damme, Crombez, Van Houdenhove, Mariman, & Michielsen, 2006).
Conclusion Despite a great deal of medical progress, little is known about the ways in which individuals with CF manage the new aspect of growing old with CF (Edwards, Clarke, & Greenop, 2013). While numerous coping strategies have been identified in other chronic illness populations, these are more limited in CF samples (Pfeffer, Pfeffer, & Hodson, 2003) and when assessed, they are typically aggregated. Since coping has emerged as an important factor in explaining emotional and social QOL, these findings hold potential for addressing an unmet psychological need within this population. Considering that coping behaviours are modifiable, future programmes should focus on educating individuals to employ coping strategies which may improve QOL in adults with CF.
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