In recent decades, medical advances have facilitated an increase in the life expectancy of many youth with pediatric chronic illness resulting in a dramatic rise in the number young adults with chronic health conditions (American Academy of Pediatrics, American Academy of Family Physicians, & American College of Physicians-American Society of Internal Medicine, 2002
). Cystic fibrosis (CF) and childhood cancer are exemplar pediatric diseases that have benefited from treatment advances given that survival into adulthood is a relatively recent phenomenon (Patenaude & Kupst, 2005
; Stark, Mackner, Patton, & Acton, 2003
). However, both groups face continued threats to health. Cancer survivors are cured, but may have physical and psychological late effects and increased potential for a new cancer diagnosis. Those with CF inevitably face a shortened life-span and deteriorating condition. These continued threats to health and related burdens may relate to changes of and impaired pursuit of personal goals and less optimal psychosocial outcomes during the transition to adulthood. Thus, the purpose of this study is to describe the goals and explore the relationship of health to goal pursuit and well-being of young adults with CF, who survived cancer, and a healthy comparison group.
Goals are internal representations of desired states or what an individual hopes to achieve in his or her current life situation (Austin & Vancouver, 1996
; Brunstein, 1993
). Goals may also be developmental tasks—goals that are specific to a developmental period and shaped by sociocultural expectations (Roisman, Masten, Coatsworth, & Tellegen, 2004
). Research on goals of emerging adults with a history of pediatric chronic illness has important scientific and clinical implications for several reasons: (1) adolescents and young adults are increasingly autonomous in setting goals, (2) pursuit of goals (e.g., academic and career achievement, close relationships) is related to well-being in young adulthood (Arnett, 2000
; Schulenberg, Bryant, & O’Malley, 2004
), (3) having a chronic illness in childhood may hinder the achievement of important developmental tasks or personal goals of emerging adulthood (Bauman, 2000
; Schwartz & Drotar, 2006
), and (4) personal goals can be an important focus of clinical interventions in illness management (Schwartz & Drotar, 2006
). Therefore, understanding young adults’ goals and how they may be hindered by health status can highlight areas of intervention to enhance resiliency and treatment adherence for pediatric patients transitioning to adulthood.
Although not well-studied in pediatric populations, research consistently supports the importance of goals for well-being in healthy samples and adults with chronic health conditions. Studies with Personal Projects Analysis (PPA; Little, 1983
), which is a methodology to assess goals used in personality psychology, have found that well-being is related to pursuit of goals perceived to be meaningful, autonomously chosen, supported, not too stressful, and that elicit a sense of self-efficacy (Little & Chambers, 2004
). During times of adversity, individuals often re-evaluate and reprioritize expectations to maintain realistic and meaningful goals (Kin & Fung, 2004
; Pinquart, Nixdorf-Hanchen, & Silbereisen, 2005
). Furthermore, many theories (e.g., social-cognitive, self-regulation, control) emphasize the importance of goal pursuit in the face of adversity to maintain well-being and enhance resiliency (Bandura, 2000
; Carver & Scheier, 1998
; Maes & Karoly, 2005
). Studies have also highlighted the struggle to maintain goal pursuit and related well-being in individuals with health conditions (Affleck et al., 1998
; Bloom, Stewart, Johnston, & Banks, 1998
; Boersma, Maes, & van Elderen, 2005
; Devins, Bezjak, Mah, Loblaw, & Gotowiec, 2006
; Echteld, van Elderen, & van der Kamp, 2001
; Pinquart, Nixdorf-Hanchen, et al., 2005
; Rapkin et al., 1994
As an extension of previous work, we introduce a construct called health-related hindrance (HRH) that assesses the impact of specific aspects of health on self-identified personal goals. HRH is assessed using PPA methodology (Little, 1983
). Participants list personal goals and rate the impact of pain, other symptoms, and management of health on each goal. Such information is clinically meaningful (e.g., highlighting what symptoms or health behaviors are hindering certain goals) and relatively easy to assess (e.g., participants responding to standard set of questions on each personal goal). Furthermore, individual goals can be empirically coded and categorized for research or can be addressed in clinical interventions. HRH is also particularly relevant for those transitioning to adulthood because goal setting and pursuit is an important focus for both normal emerging adult development and for psychosocial or disease management interventions (Nurmi, 1993
; Pinquart, Silbereisen, & Wiesner, 2005
; Schwartz & Drotar, 2006
Other related constructs exist, but differ from HRH in a few critical ways. For example, some measures of hindrance require participants to rate the impact of aspects of disease on a specified set of items such as higher-order goals (Boersma, Maes, & van Elderen, 2005
) or lifestyle domains (Devins et al., 2001
). Assessment of the impact of a specific disease or health burden limits the ability to compare across groups. Also, because ratings of hindrance are made on a pre-determined set of items for many measures of related constructs (e.g., quality of life, functional disability, goal disturbance, illness intrusiveness, activity limitations), participants answer questions about domains that may not have personal significance, even when choosing preferred items from a pre-determined list (e.g., Child Activity Limitations Scale; Palermo, Witherspoon, Valenzuela, & Drotar, 2004
). Such constructs/measures may not be personally relevant to individuals making the transition to adulthood who may not yet have long-term higher-order goals and/or may have developmentally appropriate goals that are not represented on such measures (e.g., make a plan with a friend, finish the semester). Other studies have used idiographic approaches that elicit personal goals and related progress or barriers through daily diaries or clinical interviews (Affleck et al., 1998
; Rapkin et al., 1994
). However, these goal-related constructs are not well-defined or easily measured. Finally, hope is a similar construct in that it relates to beliefs about goals (Snyder, Hoza, Pelham, Rapoff, & Ware, 1997
), but represents a dispositional trait of goal-oriented agency and pathway appraisals rather than specific hindrances of personal goals. Thus, HRH uniquely assesses the impact of general aspects of health on personal self-identified goals, which facilitates comparisons between groups (e.g., various disease groups, those with or without health problems) and can also identify targets of intervention (e.g., alleviate certain hindering symptoms, change or modify personal goals that are perceived to be hindered by illness).
To our knowledge, the present study is the first to assess HRH. In particular, the relationship of health to goals and well-being in young adults with CF, long-term childhood cancer survivors, and healthy young adults without a history of chronic illness was explored. A control group without a history of chronic illness was included to allow comparisons between disease and healthy groups given the potential for never ill individuals to also experience symptoms such as pain, fatigue, and allergies, and to engage in health behaviors such as exercise and medication use.
The first aim was to describe the content of goals and test whether or not they varied as a function of disease group. Based on health-related burden and research on re-prioritization during adversity, it was expected that those with CF and a history of childhood cancer would identify more health-related, interpersonal (goals related to social connections) and intrapersonal goals (goals related to values, introspection, spirituality) than the healthy group (Kin & Fung, 2004
; Pinquart, Nixdorf-Hanchen, et al., 2005
; Street, 2003
), but would not identify more occupational/academic, administrative/maintenance, or leisure goals.
The next objective tested the hypothesized relationship between HRH and emotional outcomes. Both negative (distress) and positive (subjective well-being) outcomes were examined in order to be consistent with previous similar studies (Palys & Little, 1983
; Emmons, 1986
; Emmons & King, 1988
) and with research demonstrating the independence of positive and negative affect (Diener, Emmons, Larsen, & Griffen, 1985
). Regression models tested the relationship of HRH to well-being and distress after accounting for variables also potentially related to the emotional outcomes. In particular, Devins and colleagues (2006
) have argued that health-related and psychosocial variables should be included in goal-related models predicting well-being. Specifically, prior research and theory provides rationale for controlling for: (1) life events given their relationship to well-being and stress and potential to exacerbate illness-related stress (Devins et al., 2006
; Sarason & Sarason, 1985
); (2) self-efficacy given its relevance for goal pursuit and well-being (Bandura, 2000
); and (3) health-related quality of life (HRQOL) given its potential relationship to well-being, to control for general perceived health status across disease groups, and to be consistent with prior related research controlled for HRQOL when examining relationships of goal-related constructs and psychosocial outcomes (Rapkin et al., 1994
). In addition, because of the various disease status of the sample, group membership was also covaried in analyses.
The final study objective was to assess the relationship between HRH and health status. It was expected that HRH would be highest in those with CF given their current health problems and disease burden, would be second highest in cancer survivors given potential late effects and need for follow-up care, and that never ill peers would experience the least amount of HRH. In addition, HRH was expected to relate to the following health-related variables: the number of patient-reported late effects (medical and psychological sequelae from the cancer or its treatment) for the group of cancer survivors, pulmonary function (average FEV1) and number of days in the hospital in the previous year for those with CF, and physical HRQOL for the entire sample.