Abstract
Based on Moos and Holahan’s “Coping With Chronic Illness and Disability” model, we examined the contribution of medical impairment, illness perception, sense of coherence (SOC), relationship with the professional team, and adherence to treatment to the psychosocial adaptation (social adjustment and life satisfaction) of young adults with cystic fibrosis (CF). We also examined adherence, an important goal in and of itself for patients with CF. Seventy-one participants completed the following questionnaires: Social Adjustment, Life Satisfaction, Perceived Illness Severity, SOC, Relationship With Team, and Compliance. The legal criteria for medical impairment were also examined. Findings indicate that female patients and patients with high SOC reported better psychosocial adaptation. Participants with more severe medical impairments reported higher levels of adherence, and those who perceived their illness to be less severe reported lower levels of adherence and greater satisfaction in life. Relationship with the team was found to contribute to social adjustment. Psychosocial adaptation is associated with internal and external resources, but not necessarily with adherence to treatment. The rehabilitation counselor’s role is, therefore, to help adults with CF bridge between the contrasting dimensions of their lives, namely adherence to strict treatment protocols and psychosocial adaptation.
Psychosocial adaptation to illness and disability has been one of the main challenges of practice and research in rehabilitation for past decades (Livneh & Parker, 2005). Cystic fibrosis (CF), a chronic and life-threatening genetic disorder, is caused by defects in a single gene that results in mucous accumulating in various parts of the body, particularly in the lungs and the pancreas (Bucks et al., 2009). CF affects multiple body systems and demands complex, intensive, and time-consuming daily care that includes chest physiotherapy, inhaled and nebulized medications, intake of pancreas enzymes, nutritional monitoring, and clinic attendance (Sawicki, Sellers, & Robinson, 2009). Advances in diagnosis and treatment have led to substantial increase in survival rates and a growing percentage of patients who reach adulthood (Abbott, Hart, Morton, Gee, & Conway, 2008; Yankaskas, Marshall, Sufian, Simon, & Rodman, 2004).
In the wake of the increased longevity of patients with CF, greater attention has been dedicated to evaluating and improving long-term rehabilitation, social adjustment, and life satisfaction (Gee, Abbott, Conway, Etherington, & Webb, 2003; Havermans, Colpaert, & Dupont, 2008; Riekert, Bartlett, Boyle, Krishnan, & Rand, 2007; Schmitz & Goldbeck, 2006). These clinical goals are generally addressed by rehabilitation counselors, a critical component of the multidisciplinary team, whose goals are to support each individual patient in adjustment to the medical and psychosocial impact of illness as well as in achieving his or her personal, professional, and social goals. With the shift of CF from a terminal to a chronic illness, the goal of rehabilitation counselors has become to support adults with CF as they contend two simultaneous and often conflicting missions: to maintain lifelong adherence to a complex treatment protocol, and in light of their serious and demanding illness, to achieve long-term personal, developmental, and social goals similar to those of their healthy peers. Such goals include independence, employment, and the establishment and maintenance of social relationships (Gee et al., 2005; Oxley & Webb, 2005; Riekert et al., 2007). To provide quality and optimal care for this population, it is imperative to have a clear understanding of the different factors that contribute or detract from adaptation to this illness.
The primary aim of the current research was to examine the unique contributors to psychosocial adaptation among young adults with CF. In addition, this study sought to examine the contributors to adherence and the association between adherence and psychosocial adaptation. The translation of this knowledge into practice will help rehabilitation counselors develop suitable interventions aimed at supporting these individuals in achieving this delicate and seemingly contradictory balance.
For the purposes of this study, we adopted the conceptual model of Moos and Holahan (2007), who contend that the vivid confrontation with a severe physical illness, prolonged treatment, uncertainty and intense personal distress has a profound and lasting impact. Most individuals cope reasonably well with such a crisis and are able to recover and achieve a new equilibrium, but others are demoralized and suffer lasting psychological problems. (p. 107)
The authors offer a multidimensional conceptual framework that views chronic illness and disability as an extended life crisis, and help to identify the primary determinants of individuals’ psychosocial adaptation to chronic illness and disability. According Moos and Holahan (2007), “In a mutual feedback cycle, health-related outcomes may alter the preceding sets of factors and consequently change longer-term health outcomes” (p. 109). One of the primary aims of Moos and Holahan’s model is to examine the factors that contribute to the psychosocial adaptation of people with physical disabilities or chronic illnesses. Their model was adapted for this study as we sought to examine the psychosocial adaptation of young adults with CF through social adaptation and life satisfaction.
Moos and Holahan’s (2007) model suggests five primary categories associated with coping: (a) personal resources, which are assessed in the current study as sense of coherence (SOC) and personal characteristics (i.e., gender, age, education, etc.); (b) health-related factors, represented here as the medical impairment; (c) social and physical context, examined in this study by means of perceived relationship with the professional team; (d) subjective appraisal, examined in the current study by patient’s illness perception; and (e) adaptive tasks, which were assessed in this study by the level of adherence to treatment.
It is important to note that for patients with CF, adherence constitutes an important goal in and of itself as it is necessity for longevity (e.g., Sawicki et al., 2009). Therefore, in this study the personal and contextual contributors to adherence among adults with CF were also examined. The similarities and differences between the contributors of adaptation and adherence were assessed as well.
Social Adjustment and Life Satisfaction of Adults With CF
The literature contains conflicting findings regarding the effects of illness on social adjustment among adults with CF. The majority of studies indicate that the adjustment and functioning of CF patients are similar to those of the healthy population (Abbott, 2003; Anderson, Flume, & Hardy, 2001; Berge & Patterson, 2004; Britto et al., 2002; DeLambo, Ievers-Landis, Drotar, & Quittner, 2004; Gotz & Gotz, 2000; Sinnema, Van der Laag, & Stoop, 1991). These studies indicate that despite the challenges they face, most adults with CF experience significant interpersonal relationships and achieve their developmental tasks with respect to work, intimate relationships, and independence (Burker, Sedway, & Carone, 2004; Frangolias, Holloway, Vedal, & Wilcox, 2003; Havermans, Colpaert, Vanharen, & Dupont, 2009; Hogg, Braithwaite, Bailey, Kotsimbos, & Wilson, 2006). However, other studies report that the presence of the illness itself may potentially interfere with normative development, and that adults with CF display a tendency for later development than their healthy peers, which becomes manifest in continued dependence on their parents and difficulty in achieving independence holding a job (Blair, Cull, & Freeman, 1994; McAnarney, 1985; Sawyer, Rosier, Phelan, & Bowes, 1995).
According to these studies, it is often difficult for these individuals to develop and maintain social and intimate relationships based on trust and security, particularly with people who are not familiar with the implications or demands of the disease. For some individuals with CF, social relationships are perceived as too threatening, so they consequently choose to distance themselves from others (e.g., Pfeffer, Pfeffer, & Hodson, 2003).
Contrary to the common expectation that chronic illness would adversely affect life satisfaction, research reveals that adults with CF report a similar (or even higher) level of life satisfaction than their healthy peers, (Anderson et al., 2001; Baker & Coe, 1993; Gotz & Gotz, 2000; Pfeffer et al., 2003; Sawyer et al., 1995). However, recent studies show that increased severity of the illness, namely the acuteness reflected in a decline in lung capacity and general functioning, results in greater treatment demands and interference with normal routine, and therefore impacts life satisfaction more than the presence of the illness itself (Goldbeck, Zerrer, & Schmitz, 2006; Schmitz & Goldbeck, 2006; Wahl, Rustoen, Hanestad, Gjengedal, & Moum, 2005).
CF: Illness Severity and Subjective Perception
Whereas the objective illness severity of CF is medically assessed based on FEV1 (Forced Expiratory Volume in 1 s), number of hospitalizations, level of oxygen (SpO2) and BMI (body mass index; Gee et al., 2003), subjective illness severity is determined based on individual self-reports. Patients often grade the severity of their illness as lower than the severity reflected by their medical records (e.g., Britto et al., 2002). This can be a result of denial, anxiety, or the need for control. It is important to note that research indicates that a patient’s evaluation of their illness (severity and changes) is a better predictor of their function and adjustment than are medical indicators. Thus, subjective perception is most crucial for patients’ adaptation to illness (Barnes, Moss-Moris, & Kaufusi, 2003; Britto et al., 2002; Gee et al., 2003; Jopson & Moss-Moris, 2003; Oxley & Webb, 2005; Sawicki et al., 2009)
Adult patients with CF vary in their disease stage and severity, and experience different clinical conditions for which diverse and unique medical and psychosocial interventions are required (Gee et al., 2005). Gender differences have been found in mortality rates, adaptation, and the quality of life of individuals with CF; studies show that women report more illness severity and lower adjustment, and die at a younger age than men with CF. These studies show that men display better adaptation to the illness (Arber & Thomas, 2001; Arrington-Sanders et al., 2006; Naidoo & Wills, 2001; Willis, Miller, & Wyn, 2001). Perceived illness severity and psychosocial adaptation vary among individuals resulting from personal characteristics as well, which are examined in the current research as SOC.
Sense of Coherence
SOC is a personal characteristic that is at the foundation of an individual’s coping and adaptation with everyday life and stressful events such as illness. Formed during childhood, it becomes stable in adulthood, remaining unchanged regardless of circumstances. According to Antonovsky (1983, 1987, 1993), SOC contains three core components: comprehensibility—the perception that one’s internal and external environments are structured, predictable, consistent, and clear; manageability—the sense that life can be managed and that resources are available to enable the individual to deal with the problems he or she encounters; and meaningfulness—the perception that life’s demands have meaning and are worthy of investing energy in, which enables the individual to seek meaning even in difficult situations.
Although there are insufficient data regarding the connection between SOC and CF, studies dealing with other chronic illnesses such as asthma or diabetes show positive correlations between SOC and the ability to cope with the disease (Cohen, 2004; Moons & Norekval, 2006; Richardson & Ratner, 2005; Sanden-Eriksson, 2000; Veenstra, Moum, & Roysamb, 2005). Findings addressing the contribution of SOC to adherence are inconclusive; whereas some studies have found that higher SOC contributes to adherence among diabetes patients (e.g., Cohen, 2004), others report that SOC was related to adherence only among those who perceived themselves to be in good health (e.g., Sanden-Eriksson, 2000); others found no association between the two (e.g., Kamwendo, Hansson, & Hjerpa, 1998). Positive correlations have been found between SOC and life satisfaction among individuals with traumatic brain injuries (Jacobsson, Westerberg, Malec, & Lexell, 2011) as well as between SOC and adjustment to chronic illness, reflected in the ability to find employment and cope successfully and independently with life’s demands (Berglund, Mattiasson, & Nordstrom, 2003; Leksell, Wikblad, & Sandberg, 2005; Moons & Norekval, 2006; Sanden-Eriksson, 2000).
Relationship With the Professional Team
The multidisciplinary professional team is another core element that plays a crucial role in the life of individuals with CF. This relationship between a patient and his or her professional team is often unique, continuous and characterized by intense intimate and emotional involvement (Gozdzik, Majka-Sumner, Nowicka, Piorunek, & Batura-Gabryel, 2005). The better the relationship with the professional team, the better the understanding of the illness and thus, improved treatment adherence (Madge, 2006; Oxley & Webb, 2005; Zindani, Streetman, Streetman, & Nasr, 2006). A good relationship with the professional team has been found to enhance effective coping resources among chronically ill patients and to be linked to better adjustment to illness (Cohen, 2004, Moons & Norekval, 2006). Although the association between SOC and the ability to benefit from professional support has not been examined, Kobasa and Puccetti (1983) suggested that someone high in personal resources such as self-mastery makes better use of supportive relationships, which can in turn lead to better illness adjustment.
CF requires ongoing adherence to demanding a treatment protocol that often poses as a significant long-term challenge for adults who live with it (Marciel, Saiman, Quittell, Dawkins, & Quittner, 2010).
Adherence to Treatment Among CF Patients
Research has shown that adherence to treatment among CF patients is associated with improved pulmonary status and increased longevity (Elborn & Bell, 1996; Thomas, Cook, & Brooks, 1995). Moreover, nonadherence to treatment might cause significant problems, particularly during adolescence when the responsibility for treatment and adherence transfers from the parents to the patient (Conway, Pond, Hamnett, & Watson, 1996; Hamlett, Murphy, Hayes, & Doershuk, 1996).
Recent research indicates that there are many factors that contribute to adherence, including demographic factors (age, gender); the interaction between patient, family, and the professional team; anxiety; and the patients’ desire to gain control over their life and coping style (Kettler, Sawyer, Winefield, & Grevielle, 2002; Modi et al., 2006; Oxley & Webb, 2005; Zindani et al., 2006). While the association between adherence and objective illness severity has not been examined, illness perception (subjective severity) has been reported to contribute to adherence; the more severe the patients perceive their illness, the more compliant they are to treatment (Abbott, Dodd, Bilton, & Webb, 1994; Abbott & Gee, 1998; Britto et al., 2002). Studies examining adherence to treatment among individuals with other illnesses such as acute myocardial infarction found that adherence was associated with low levels of depression and improved physical conditions (Leifheit-Limson et al., 2012). Because adherence is crucial as a means and a goal, in this study we sought to examine whether adherence was a contributor to adaptation that we measured by assessing social adjustment and life satisfaction. Research variables contributing to adherence were examined as well.
Following Moos and Holahan (2007), in this study we sought to examine the contribution of medical impairment and subjective illness severity, SOC, relationship with professional team, and adherence to treatment to the social adjustment and life satisfaction of patients with CF. In addition, we sought to examine the contributors to adherence, and compare the patterns of contributions between adherence and the two dimensions of psychosocial adaptation (social adjustment and life satisfaction).
This study hypothesized the following:
Hypothesis 1: Better social adjustment and higher life satisfaction would be predicted by higher SOC, lower medical impairment, better subjective illness perception, better relationship with the professional team, and better adherence.
Hypothesis 2: Better adherence would be predicted by higher SOC, lower medical impairment, better subjective illness perception, and better relationship with the professional team.
Method
Sample
Adult patients (above 18 years; M = 27, SD = 7.65) being treated at one of the six CF centers throughout Israel who had not undergone a lung transplant, were recruited for the study. A total of 112 patients met the criteria. Of these, 32 refused to participate, 11 were in critical condition, and 7 had just started a new job or were not emotionally available. 71 out of the 112 (63.4% response rate) eligible patients participated in this study. Most participants were from the two main hospitals (Sheba 41 and Schneider 11) in the center of Israel, others were from Southern Israel (10, 1, 5), only a few were from hospitals in Northern Israel (3). It is important to note that the CF centers and professional teams throughout Israel are well coordinated and share a similar working protocol under the auspices of the Cystic Fibrosis Association of Israel. Demographic features of the participants appear in Table 1.
Characteristics of Study Participants (N = 71).
Percentages do not total 100% because some of the patients worked in the past and/or are currently working.
Procedure
The research protocol was reviewed and approved by the Sheba Medical Center Institutional Review Board. A social worker at each CF clinic contacted potential participants by telephone. Questionnaires and a return envelope were mailed to those who consented to participate. Objective medical measurements were taken from the patients’ medical files by the researchers. Most of the participants (65%) completed and returned the questionnaires within 2 weeks. The others (35%) were encouraged by phone to do so, and returned the completed questionnaires within a month.
Measures
The Social Adjustment Questionnaire
The original Social Adjustment Questionnaire (Olson, Fournier, & Druckman, 1982) was shortened and translated into Hebrew by Ungar & Florian (2004), and included 10 items in two subscales: (a) Evaluation and Nurturing Relationship Issues and (b) Communications and Happiness. For the current study, the questionnaire was shortened to 7 items (e.g., “I usually enjoy being socially involved”). Answers were marked on a Likert-type scale from 1 (totally disagree) to 5 (totally agree), with higher scores indicating better adjustment. Cronbach’s alpha for the translated version of Ungar & Florian was .66 and 68 and Cronbach’s alpha for the 7 items in the current study was .72.
Satisfaction With Life Scale
For the purpose of the current research, this instrument (Diener, Emmons, Larsen, & Griffin, 1985), consisting of five questions describing life satisfaction (e.g., “I’m satisfied with my life”), was translated by the authors into Hebrew using the Brislin Back method (Brislin, 1980). The answers were marked on a Likert-type scale ranging from 1 (strongly disagree) to 7 (strongly agree), with higher scores indicating higher satisfaction with life. According to Diener et al. (1985), the 2-month test–retest correlation coefficient was .82, and Cronbach’s alpha was .87. Cronbach’s alpha in our study was .88.
Medical impairment was examined based on the legal criteria of medical impairment and functional limitations as defined by the Israeli National Insurance Institute for the purposes of disability insurance.
Subjective illness severity was examined through the question “How do you perceive your medical condition in comparison to other CF patients?” The answer was marked on a Likert-type scale from 1 (very bad) to 5 (very good), with a lower score indicating a less severe illness.
Sense of Coherence Scale
The Hebrew translation of the short version of this scale was used to assess SOC (Drori, Florian, & Kravitz, 1991). The scale (Antonovsky, 1983, 1987) consists of 13 items relating to three components: meaningfulness, comprehensibility, and manageability of life (e.g., “Do you feel that you don’t really care about what goes on around you?”). Answers were marked on a Likert-type scale ranging from 1 (always) to 7 (never), with higher scores indicating higher SOC. Cronbach’s alpha in Drori et al.’s (1991) research was .82. In our study, Cronbach’s alpha was .83.
Relationship with the Multidisciplinary Team Questionnaire
This instrument was developed by the authors for the purposes of the current research to evaluate the patient’s perceived relationship with the professional team. The questionnaire consisted of 14 items (e.g., “I feel that the team members understand me”; “I have full confidence in the professional team”; “I feel that I have a good relationship with the team”). The answers were marked on a Likert-type scale from 1 (strongly disagree) to 5 (strongly agree), with higher scores indicating a more positive perception of the relationship with the team. Cronbach’s alpha in our study was .90. CF patients who were not suitable to participate because of age were asked to fill the questionnaires to check the clarity of the wording and structure of the questions. In addition, professionals were asked to assess and provide feedback on the questionnaire. Revisions were made based on these comments.
The Adapted Manchester Adult Cystic Fibrosis Compliance Questionnaire
This questionnaire (Abbott et al., 1994) was utilized to examine the level of adherence to treatment among adult CF patients. The original questionnaire included 30 items. Thirteen items relevant to the current context were translated into Hebrew by the authors using the Brislin Back method (Brislin, 1980). Responses were recorded on scales ranging from 1 to 4 or 1 to 5, and were standardized for data analysis. Higher scores indicated better compliance. Cronbach’s alpha in our study for the 13 items was .78.
Sociodemographic Questionnaire
The instrument consisted of 11 items relating to the respondents’ demographic and social background (e.g., age, gender, marital status, education).
Results
In the first stage of data analysis, means and standard deviations (SD) were calculated for all research variables. Pearson correlations were then calculated between the independent and dependent variables. Means, standard deviations, and Pearson correlations are presented in Table 2.
Means, Standard Deviations, and Correlation Matrix Among All Research Variables for CF Patients (N = 71).
p < .05. **p < .01. ***p < .001.
Table 2 indicates that the participants reported relatively high levels of social adjustment (M = 4.07 out of 5, SD = 0.71), high levels of life satisfaction (M = 4.89 out of 7, SD = 1.43), high levels of medical impairment (M = 67.99 out of 100, SD = 30.83), high levels of illness severity (M = 3.72 out of 5, SD = 0.95), high levels of SOC (M = 4.86 out of 7, SD = 0.95), high perceived relationship with team (M = 4.12 out of 5, SD = 0.72) and high levels of adherence (M = 3.10 out of 5, SD = 0.79).
An interesting picture emerged from the correlations in Table 2: Contrary to expectations, those with more severe medical impairments adhered better to treatment but showed poorer social adjustment. In addition, those who subjectively perceived their illness to be less severe were those who saw their relationship with the professional team as less meaningful and reported lower levels of adherence; as expected, these participants reported greater life satisfaction. Objective medical impairment was moderately associated with subjective illness severity. Those with higher levels of SOC had a more positive assessment of their relationship with the team and showed high levels of social adjustment and life satisfaction. Meaningful relationship with the professional team was associated with social adjustment. Adherence was neither associated with social adjustment nor with life satisfaction. Social adjustment and life satisfaction were positively associated.
To examine the association between continuous sociodemographic variables (such as age) and the dependent variables, Pearson correlations were conducted. One-way MANOVAs were calculated in regard to categorical variables (such as gender, marital status, employment). The only significant difference was found with respect to gender, F(2, 69) = 7.71, p < .001, µ2 =.18. Women reported better social adjustment (M = 4.31, SD = 0.65) than men (M = 3.86, SD = 0.70), as well as higher levels of life satisfaction (M = 5.52, SD = 0.93; M = 4.89, SD = 1.43, for women and men, respectively).
In the third stage of the data analysis, three separate hierarchical regression analyses were carried out to examine the unique and combined contribution of the independent variables to the explained variance of social adjustment, life satisfaction and adherence. In all three analyses, gender was entered in the first step, subjective illness severity and medical impairments in the second step, and SOC and relationship with the professional team in the third step. In the fourth step, adherence to treatment was entered only to the regressions of social adjustment and life satisfaction. In these first steps, the variables were entered in forced order. Interactions between the variables were entered in the fourth step of adherence and in the fifth step of social adjustment and life satisfaction. Only interactions that reached a significance higher than p < .05 are presented.
The results of the regressions appear in Table 3. As can be seen from Table 3, life satisfaction revealed the highest explained variance (54%), followed by social adjustment (43%), and adherence (28%). A power analysis (GPower 3.1) was conducted. The analysis indicated high power for each of the dependent variables (.99 for social adjustment, .99 for life satisfaction, and .92 for adherence indicating that the number of participants is sufficient for these regressions; Faul, Erdfelder, Buchner, & Lang, 2009).
Summary of Hierarchical Regression Analyses of Social Adjustment, Life Satisfaction, Adherence to Treatment.
*p < .05. **p < .01. ***p < .001.
Regarding social adjustment and life satisfaction, gender accounted for a significant proportion of the explained variance, contributing 10% to social adjustment and 17% to life satisfaction, with women reporting better social adjustment and greater life satisfaction than men. The medical impairment and subjective perception of the illness accounted for 17% in life satisfaction and an insignificant 3% in social adjustment. Participants who assessed their health as better showed higher levels of life satisfaction. Interestingly, the internal and external resources accounted for 24% of the variance in social adjustment and 20% in life satisfaction, indicating that higher levels of SOC contributed strongly to social adjustment and life satisfaction; a more positive assessment of the relationship with the team contributed only to social adjustment. In the fourth step of analysis adherence to treatment neither contributed to social adjustment nor to life satisfaction indicating no relation between these variables.
In the final step, a significant interaction emerged for social adjustment (Subjective illness severity × SOC). This interaction accounted for 6% of the variance of social adjustment. Simple slope analyses (Aiken & West, 1991) revealed that among patients with high SOC, lower perceived illness severity was associated with better social adjustment, b = .31 p < .01, whereas among patients with low SOC no significant association was found b = −.07, p > .05. Among respondents displaying a higher SOC, the less severe their perceived illness severity the better their social adjustment.
Regarding adherence, as can be seen from Table 3, the subjective and objective severity of the illness accounted for 17% of the variance in adherence in the first step. Participants with more severe medical impairments reported higher levels of adherence and those who assessed their health as better showed lower levels of adherence. Interestingly, the internal resource of SOC and the external resource of relationship with team did not account for the variance of adherence.
In the final step, two interactions (Medical impairment × Subjective illness severity, and Medical impairment × Relationship with team) accounted for an additional 11% of the variance of adherence. Simple slope analyses (Aiken & West, 1991) revealed that subjective illness severity was negatively associated with adherence among participants whose level of medical impairment was low, b = −.49, p < .001 whereas, among participants whose level of medical impairment was high, no significant association was found, b = −.07, p > .05. In other words, only among patients with lesser medical impairments, those who perceived their illness to be less severe showed lower levels of adherence to treatment.
The second interaction was between relationship with the team and medical impairment. Findings indicate that the relationship with the team was positively and significantly associated with adherence only among patients with severe medical impairment, b = .33, p < .05, whereas no significant association was found among those with lower levels of medical impairment, b = −.20, p > .05. Thus, only among patients with more severe medical impairments did those who felt close relationships with the professional team display a high level of adherence to treatment.
Discussion
Thanks to a better understanding of CF and medical advances in disease illness management, the population of CF adults is growing larger. However, this population faces a difficult reality when their illness comes in conflict with their desire to live full and active life. Intra- and interpersonal dissonance often results, as leading full life while adhering to the demands of treatment is practically and emotionally challenging.
In this study, we adapted Moos and Holahan’s (2007) model to identify the contributors to social adjustment and life satisfaction among young adults with CF. We also aimed to explore the contributors to adherence and examine whether patients who managed their illness and adhered to treatment would be more satisfied with their lives and have better social adjustment. Results indicate that adults with CF reported high levels of life satisfaction and social adjustment. These findings corroborate previous studies on quality of life among adults with CF that indicate that despite the challenges, most patients achieve their developmental tasks with respect to work, intimate relationships, and independence (Burker et al., 2004; Frangolias et al., 2003; Havermans et al., 2009; Hogg et al., 2006).
Results also showed high levels of adherence to treatment but interestingly, no association between adherence and social adjustment or life satisfaction. Furthermore, the more severe the patients perceived their illness the more they adhered to treatment, but the less life satisfaction they reported. In addition, those whose medical impairments were more severe adhered better to treatment, but showed poorer social adjustment. Sawicki et al. (2009) found a similar link between the perception of burden associated with adherence and the increasing demands of treatment, indicating that the greater the adherence to treatment, the greater the perceived burden on patients' life.
Our results indicate that the two major challenges of adherence and psychosocial adaptation reflect different entities with dissimilar patterns of relationships with the other examined variables. Whereas the internal resource of SOC contributed positively to the two measures of psychosocial adaptation, subjective illness severity and medical impairments contributed positively to adherence but negatively to life satisfaction. Findings reveal that among patients with lower medical impairments, those who perceived their illness to be less severe were less adherent to treatment. This could indicate that those in a less threatening position have fewer treatment obligations and thus do not have the internal and external reminders reinforcing the importance of adherence.
Another contributor to adherence is the patients’ relationship with the professional team. Findings show that among those with higher levels of medical impairments, the closer this relationship was perceived to be, the more the patient adhered to treatment.
CF clinics in Israel are part of the public health services and are located in a number of hospitals throughout the country. In every health center that specializes in CF, there are approximately 100 patients, a relatively low number. This greater counselor-patient ratio allows for a stronger personal connection between the patients and the therapeutic staff, and enables more accessible and flexible services.
CF is considered a chronic illness according to the Basket of Health Services in Israel, and as such, most of the treatment is covered by the Ministry of Health; patients are not required to pay for services including visits to the hospital clinic (ambulatory services), visits to the emergency room, treatment funding, and so forth. The work of the professional team in the case of CF is characterized by unique features, including a high level of availability and continuous practical and emotional involvement over the course of many years. In the CF hospital wards and clinics, patients are treated by the same professional staff from birth and a lot of attention dedicated to the personal connection between the patient and the multidisciplinary team. The personal and professional connection contributes to patients’ sense of security, which is particularly critical when living with an illness that is fraught with doubt and uncertainty. It is therefore important to note that adherence to treatment is primarily personal and not related to difficulties with funding, team availability or accessing rights to treatment.
As a result, this relationship becomes a significant and even critical factor in the patient’s life. In this study, a significant correlation was found between relationship with the professional team and SOC, suggesting that CF patients with higher SOC are more capable of taking advantage of available support, as reported in the literature (Wolff & Ratner, 1999).
As mentioned, different factors, including gender, were found to contribute to adaptation: female patients reported better social adjustment and life satisfaction than male patients. In contrast to our findings, previous studies (Abbott et al., 2008; Gee et al., 2003; Willis et al., 2001) indicate that men report higher levels of adaptation. The difference may be explained by the culture of Israeli society where men are expected to serve in the army, a prototypical masculine experience that contributes significantly to social status, personal development and self-esteem. Most CF patients are unable to fulfill this national obligation and may therefore feel apart from mainstream society. Another explanation proposed in the literature for the lower adaptation of men relates to the possible impact of CF on reproductive and sexual functioning, which is more prevalent among men than women (Pfeffer et al., 2003; Sawyer, Farrant, Cerritelli, & Wilson, 2005). Furthermore, unlike the interaction found for adherence, relationship with the professional team contributed to the social adjustment of all respondents. The different patterns of associations that emerged here highlight that adherence and social adjustment are two very different, and at times even conflicting, challenges for the adult CF patient.
Another important finding of the current study relates to the distinct and significant contribution of subjective illness severity to adherence and to psychosocial adaptation. Similar findings are reported by Bucks et al. (2009), where nonadherence was associated with the patient’s perception of the necessity of a given treatment and their condition as well as their sense of self-efficacy and control: The more the patients doubted the necessity of treatment, the less they adhered to it. Our findings indicate a positive correlation between subjective illness severity and social adjustment, particularly among patients with high SOC. This is consistent with the reports of studies in the field of positive psychology (Barakat, Alderfer, & Kazak, 2006; Diener, 2000), which indicate that people can experience well-being and quality of life despite physical limitations. This highlights an individuals’ ability to cope with difficult conditions and the accompanying distress in a positive manner. In conjunction with other studies (e.g., Wahl et al., 2005), our findings suggest that despite their critical disease, adults with CF can display positive adaptation, as the subjective illness perception and personality resource of SOC can be significant contributors to social adjustment.
Limitations
There are some limitations of this study, which should be considered before reaching any practical implications. First, the research tools were self-reported and based solely on patient reports. Future studies should include observational methods and data obtained from other relevant sources, such as professionals or family members. Second, the sample consisted of patients receiving treatment at different CF centers in Israel and thus, some of the factors identified could have been related to the local hospital environment and professional staff. Third, no patients with other chronic illness were included for comparison and thus, no generalization to people with other chronic conditions can be drawn. Fourth, the variables were measured at a single point in time. As CF is a very dynamic illness that progresses and changes over time, to study individuals at one point leaves many of the dynamic and shifting contributing factors unexplored. In light of the unique nature of CF, future research might adopt a longitudinal design to examine the association between adherence and psychosocial adaptation overtime. Fifth, additional dimensions of adaptation such as vocational adjustment, quality of life, well-being or familial adjustment should also be examined in future studies. Finally, one cannot ignore that potential culture-specific factors may have impact on the findings. Future studies could further examine CF patients’ psychosocial adaptation and adherence in the context of additional cultures to obtain cross-cultural validation.
Implications for Practice and Conclusion
Notwithstanding the limitations, this study highlights different factors that contribute to life satisfaction and social adjustment of adults with CF. This study confirms previous reports identifying the significance of the subjective perception of illness severity over the objective impairment, as it greatly affects adherence and life satisfaction. However, it is also crucial to add to the dialogue the importance of assessing the objective data and not just relying on the subjective experience, because there is often a gap between the two as is indicated in our findings.
Results suggest that, given the unique nature of CF, adaptation is not necessarily associated with adherence and may even conflict with it. These findings cast doubt on the common assumption that adherence to treatment leads to an improved medical condition and thus automatically enhances adaptation. As the goal of rehabilitation counselors is to support individuals with CF with confronting their developmental challenges, it is important that they consider the different elements of adaptation. The primary goal of rehabilitation counseling is to improve the individuals’ quality of life, which is reflected in areas like personal well-being, employment, social and familial relationships, and leisure (e.g., Bishop & Feist-Price, 2001; Roessler, 1990). Our findings highlight the importance of the relationship of patients with their multidisciplinary professional team as well as the internal resource of SOC, both of which play a significant role in psychosocial adjustment. This is a unique challenge among adults with CF as they need to maintain a delicate balance between the medical treatment protocol and quality of life. The treatment protocol requires numerous medications, airway clearance, exercise, and a strict diet, all imposing constant and intense demands on normative routine. The treatment protocol is characterized by time consumption, obedience, loss of control, and burnout (e.g., Kettler et al., 2002). In contrast to the pressures imposed by CF and the treatment demands, there exist crucial human needs such as independence, spontaneity, pleasure, and self-fulfillment, which reflect quality of life and lead to adaptation. This dissonance often leads to a conflict between the various areas of life, and results in lack of collaboration with health care professionals and reluctance to adhere to the treatment regimen. There is a great personal cost to nonadherence, as in addition to neglected medical needs, individuals often do so covertly, without consulting or informing their health care providers, family, or friends. This secrecy and nonadherence often result in feelings of guilt, anxiety, and depression.
The counselor’s role is, therefore, to help adults with a CF bridge between these two contrasting dimensions of their lives. Specifically, the responsibility of the rehabilitation counselor is to gain the trust of the individual who is ill and to develop a personalized treatment program that considers the personal characteristics, variations, and pros and cons for each treatment demand. Such a contract, a treatment plan that is based on collaboration between the patient and counselor that truly considers and addresses personal experiences, needs and priorities, will allow for good and informed decision making by the individuals themselves as they are supported in clarifying and reaching personal goals.
Furthermore, rehabilitation counselors may serve as mediators between the individual and the primary medical team who are concerned with the implications of nonadherence.
It is important to note that while those who have better health are less cooperative and adjust better in the short term, the lack of adherence to treatment may cause damage to patients’ health and adjustment in the long term. Therefore, it is very important for rehabilitation counselors to be vigilant and bring them to a compromise in which they will strictly adhere to the critical parts of the treatment to prevent a deterioration of their health in the future.
Finally, it is important to consider the care for and plan unique intervention strategies for the men with CF who according to the research results have less life satisfaction and less fulfilling social lives.
This multifaceted and holistic approach values not only the harsh treatment requirements but also relates to, respects, and accounts for the interests, ambitions, and developmental tasks of the individual with an illness. This vision allows for the creation of more grounded and suitable treatment protocols, which can promote and support greater cooperation and adherence among adults with CF, a critical tool for quality of life and personal development.
Footnotes
Acknowledgements
We would like to extend our deepest appreciation to the participants in this study, as well as to the social workers at the cystic fibrosis (CF) centers throughout Israel and the chief of social service at the Israeli CF Association, who helped recruit the participants.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.