The relationships among uncertainty, social support, and psychological distress in adolescents recently diagnosed with cancer

The Relationships Among Uncertainty, Social Support, and Psychological Distress in Adolescents Recently Diagnosed With Cancer Kathleen

Neville,

RN, PhD

Uncertainty in illness about diagnosis, symptoms, prognosis, treatments, and relationships with health professionals is a major psychosocial stressor for adolescents recently diagnosed with cancer. In this study, the theoretical linkages of the uncertainty in illness theory of perceived social support, uncertainty, and psychological distress were tested. Respondents consisted of 60 adolescents between the ages of 14 and 22 years who were recently diagnosed with cancer. Data were generated by three questionnaires and analyzed using Pearson product moment coefficients and multiple regressional analyses. Hypotheses tested were that among adolescents with cancer (1) there will be an inverse relationship between perceived social support and uncertainty; (2) there will be a positive relationship between uncertainty and psychological distress; (3) there will be an inverse relationship between perceived social support and psychological distress; and (4) there will be an inverse relationship between perceived social support and psychological distress when controlling for uncertainty. Findings were as follows: the first three hypotheses were supported; there was no relationship between perceived social support and psychological distress when controlling for uncertainty. An interaction effect of perceived social support and uncertainty explained 39% of the variance in psychological distress. o 1998 by Association of Pediatric Oncology Nurses.

A

LTHOUGH RECENT medical and technological advances have dramatically improved survival rates among children and adolescents with cancer to greater than 60%, the diagnosis of cancer remains associated with increased levels of psychological distress. l-3 Uncertainty, a factor associated with psychological distress, has been identified as the most striking feature of pediatric cancer and is a major concern to adolescents with cancer.4-6 Koocher and O’Malley7 describe uncertainty in childhood cancer as the DaFrom the Department of Nursing, Kean University, Union, NJ. Address reprint requests to Kathleen Neuille, RN, PhD, Department of Nursing, Kean University, Union, NJ 07083. o 1998 by Association of Pediatric Oncology Nurses. 1043-4542/98/l 501.0006$3.00/O Journal

of Pediatric

Oncology

Nursing,

mocles syndrome, named for a courtier in ancient Syracuse whose king invited him to a lavish banquet, but arranged his seat directly below a sword suspended by a single thread. Although scientific progress has created realistic hopes, the ultimate fate of any one child or adolescent with cancer remains unknown.

Background The role of social support and positive mental health outcomes in cancer has been heavily investigated in recent years.8 Although studies have shown the relationships between uncertainty and social support and between social support and psychological distress,gl10 investigators have suggested the need to examine the influence of intervening factors on social support and psychological Vo/ 15, No 1 (January),

1998: pp 37-46

37

38

Kathleen

distress.11,12 The purpose of this study was to describe the relationships among perceived social support, uncertainty, and psychological distress in adolescents recently diagnosed with cancer.

Theoretical Framework The theoretical framework of this study was derived from Mishel’s theory of uncertainty in illness. Uncertainty is the “inability to determine the meaning of events, assign definite values to objects and events, and/or accurately predict outcomes” (p. 98). l3 Mishel developed this model to investigate the role of uncertainty as a perceptual variable that influences the appraisal of events related to illness, hospitalization, and treatment. Uncertainty occurs when illness-related events, such as diagnosis, symptoms, treatment, and prognosis, are not “distinct, available, specific, and familiar” (p. 23), leading to the inability to recognize or classify them.r4 Uncertainty interferes with the formation of a cognitive structure, which reduces one’s personal ability to appraise the event. In this study, psychological distress is conceptually defined as the presence of “dysphoric thoughts and feelings associated with a person’s disorder and occurs as a direct result of the illness and its sequelae” (p. 79).15 Uncertainty exerts a direct effect on psychological distress.13a*6 For example, Cohen and Klopovich17 inferred that, although the cure rate of pediatric cancer has improved, uncertainty of death still accounted for much of the distress experienced by adolescents with cancer. Additionally, in a longitudinal study of 10 families in which a child had been diagnosed with cancer, Cohen and Martinson reported that all families identified uncertainty as a major stressproducing event. Among survivors of Ewing’s sarcoma who were diagnosed during adolescence, uncertainty was reported to be one of the most negative experiences during the diagnosis and treatment phase. lg When uncertainty is appraised as a danger, coping efforts are used to reduce uncertainty.20 If coping efforts are effective, adaptation then occurs. Difficulty in adaptation is

Neuik

congruent with psychological distress, poor psychosocial adjustment, and family adjustment problems. 7 In a grounded theory study investigating how families manage uncertainty, Cohen21 found that parents developed strategies to manipulate what was known, unknown, and unknowable. This conclusion came from data that were collected from 21 families with a child who had a life-threatening chronic illness as well as published biographical accounts of parents of children with life-threatening diseases and an extensive review of the literature on uncertainty. Strategies included becoming present-day oriented; managing stressful social interactions; planning disclosure decisions; deliberate efforts to block or avoid thinking about the illness; and limiting, modifying, extracting, and discounting information from health professionals. Similar strategies to deal with uncertainty were reported in a study of 63 adolescents between the ages of 11 and 20 years who were diagnosed with cancer.22 Newly diagnosed patients were less likely to want additional information about their illness than adolescents who had been in treatment longer. Social support is an important multidimensional concept in determining how people adapt to cancer. Perceived social support is the personal recognition of “relational provisions in the form of attachment, social integration, opportunity for nurturance, reassurance of worth, sense of reliable alliance, and the availability of guidance” (p. 23-24).23 In a study of the stress buffering hypothesis, the effects of social support have been linked more to the perception of available support than to received support.24 Although the presence of support may be expressed, unless a person perceives support to be available it cannot be used.25 Researchers have hypothesized that the social system may help buffer the effect of life events on psychological states.26-27 Data from studies of adolescents in stressful life situations have supported this assumption. For example, Aro, Hanninen, and Paronen28 studied 2,013 healthy adolescents and found that adolescents who lack peer and parent support are

Uncertainty,

Social Support

at risk for developing psychosomatic symptoms when faced with stressful life events. Tebbi et alzg found that the need for social support was so strong in a sample of 27 adolescents with cancer who had undergone limb amputation that parental support filled the void when peer support was lacking in 77.7% of this sample. The diagnosis and induction-of-treatment phase of cancer are a turbulent crisis point in the clinical course of disease for both adolescents and family members.30 Many parents report the period of diagnosis “as the hardest blow they had to bear throughout the course of the illness” (p. 415).31 The uncertainty and fears generated by a diagnosis of cancer often result in an increased need for social support. Wortman 32 found that individuals with cancer experience difficulty in obtaining merely adequate support. Among survivors of cancer during adolescence who were asked to give advice to newly diagnosed patients, seeking support from friends, family, and other cancer patients was recommended.1g Although many cancer patients want to discuss their disease, family members and friends often feel threatened and anxious, which results in uncomfortable and strained interactions.g,32 This may be especially true for adolescents who may perceive the need to act like an adult or to protect their parents.1g,33 Typical developmental concerns, such as the struggle for independence, changed body image, and peer relationships may be altered among adolescents with cancer who often feel misunderstood, avoided, and rejected by their peers and whose parents often provide the major source of social support.34 Isolation and the loss of peer support can be more distressing than the threat of disease.30 Social support may reduce uncertainty through modification of ambiguity about the illness state and the complexity perceived in treatment.20 As a result of the uncertainty generated by the diagnosis of cancer and the resultant distress, many people experience an increased need to clarify what is happening to them and to be supported and reassured by others.8-g In support of this assumption, Scoloveno et al35 found a negative

and Distress

39

relationship between perceived social support and uncertainty among 49 adolescents between the ages of 13 and 18 years who were receiving treatment for idiopathic scoliosis in an outpatient clinic. Social support provides feedback about the meaning of events9 and discussion with supportive others can be an opportunity to clarify situations that may help the patient form a cognitive schema32 and thus reduce distress. The inverse relationship between social support and psychological distress has been shown in adults.36-37 Few researchers have focused on clarifying the way social support buffers the experience of distress, ie, whether social support influences a person’s appraisal of the stress.32 According to Mishel and Braden, uncertainty is an intervening variable in the relationship between social support and psychological distress, as social support may facilitate a person’s ability to clarify uncertain situations, and uncertainty may influence psychological outcomes. Mishel’s theory proposing uncertainty as an intervening variable provides an approach to the important inquiry of how social support influences mental health. Additionally, no descriptive studies have investigated the constructs of uncertainty, social support, and psychological distress in an adolescent oncology population. Based on this, the hypotheses are as follows: (1) There is an inverse relationship between perceived social support and uncertainty in adolescents recently diagnosed with cancer; (2) There is a positive relationship between uncertainty and psychological distress; (3) There is an inverse relationship between perceived social support and psychological distress; and (4) There is an inverse relationship between perceived social support and psychological distress when controlling for uncertainty.

Method Sample Adolescence is considered to be a lo- to 12-year transitional developmental time span beginning with the onset of pubescence and concluding when social maturity, economic independence, and emancipation from fam-

Kathleen

40

ily are achieved. 38 In this study, adolescents with cancer were persons 14 to 22 years of age who had been diagnosed with a primary malignancy within the last 3 months and who were receiving outpatient treatment. The sample size of 60 participants was determined as 20 cases per variable is recommended for multiple regression analyses.3g The purposive sample consisted of 40 male and 20 female adolescents whose mean age was 18.98 years (SD = 2.17 years). Twentyeight (46.6%) adolescents were between the ages of 14.8 and 18.8 months (middle adolescence); and 32 were between the ages of 18.9 months and 22.7 (late adolescence). The sample was relatively homogeneous in regard to ethnicity. Fifty-two adolescents (86.7%) were Caucasian, five (8.3%) were of Spanish descent, and three (5%) were African-American. All participants attended high school, technical school, or college and lived at home. The disease categories were representative of the major types of cancer found during adolescence (Table 1). Cancer treatments included chemotherapy and surgery (41.7%), chemotherapy alone (28.3%), radiation and chemotherapy ( 13.3%)) surgery alone ( 11.7%)) and radiation alone ( 1.7%).

Instruments Mishel Uncertainty in Illness Scale. The Mishel Uncertainty in Illness Scale (MUIS) consists of 33 items designed to measure the TABLE 1. Cancer Diagnoses

of the Study Sample

Diagnoses Acute lymphocytic leukemia Acute nonlymphocytic leukemia CNS tumor Ewing’s sarcoma Hodgkin’s disease Non-Hodgkin’s lymphoma Osteogenic sarcoma Rhabdomyosarcoma Testicular cancer Ovarian teratoma Other Abbreviation:

CNS,

central

Cumulative %

n

%

5

8.3

8.3

1 1.7 1 1.7 6 10.0

10.0 11.7 21.7 48.4 50.1 63.4 66.7 88.4

16 26.7 1 1.6 8 13.3 2 3.3 13 21.6 2 3.3 5 8.3 nervous

system.

91.7 100.00

Neuile

uncertainty perceived in illness. Originally designed to address uncertainty in hospitalized clients, the scale contains items referring to illness and treatment as well as relationships with hospital personnel,40 and has been used extensively in cancer, cardiac, and chronic illnesses.41 The MUIS can be used in either a two-factor or four-factor version. Because of inconsistent and variable reliabilities in the four-factor version, the two-factor version was used in this study. The two factor version consists of ambiguity, a 16-item subscale tapping the perception of vague and indistinct cues about the state of the illness, and complexity, a 12-item subscale tapping the perception of multiple and varied cues about the treatment and the system of care. Construct validity has been established by the finding that the instrument distinguished among medical, surgical, and diagnostic hospitalized patient populations in the predicted direction, with patients with unconfirmed diagnoses scored highest on uncertainty.40 Evidence of convergent validity was obtained by converging the MUIS with the Comprehensive Interview adapted from the Recall Test4* Uncertainty was inversely related to level of comprehension of informed consent for radiotherapy (r = -.56, P < .002) as predicted.14 Alpha coefficient reliabilities of .91 for the total MUIS and the four-factor MUIS have been shown in two adolescent studies.35 In this study, an alpha reliability coefficient of .90 was found for the total scale, .86 for the ambiguity subscale, and .78 for the complexity subscale. Scores range from 28 to 140; higher scores reflect higher uncertainty in illness. BriefSymptom Inuentory. The Brief Symptom Inventory (BSI) is an abbreviated version of the Symptom Checklist 90-R (SCL90)43 and consists of 53 self-report items designed to reflect the psychological symptom status of medical, psychiatric, and nonpatient individuals. The BSI, and its parent, the SCL-90-R have been used extensively in oncology patients and has been used in adolescents as young as 13 years, and with adolescents with cancer.44 Each of the 53 items is rated on a 5-point Likert type scale of psychological distress ranging from 0 (not

Uncertainty,

Social Support

at all) to 4 (extremely) on the nine symptom dimensions of anxiety, depression, hostility, interpersonal sensitivity, obsessive compulsive, phobic anxiety, paranoid ideation, psychoticism, and somatization. Construct validity was established by principal components analysis with Varimax rotation in a sample of outpatients (N = 1 ,002).45 Although seven factors corresponded to the hypothesized symptom dimensions, the anxiety dimension was split into panic anxiety and nervous tension, and the interpersonal sensitivity dimension, which consists of only four items, did not emerge as a factor. Overall, nine factors with loadings greater than .35 were derived and accounted for 44% of the matrix. Convergent validity was established by reanalyzing a previous study comparing the SCL-90 with the Minnesota Multiphasic Personality Inventory in a sample of 209 symptomatic volunteers. Alpha reliability coefficients for the nine symptom dimensions ranged from .71 to .85. Among 497 well adolescents using the BSI, a Cronbach’s coefficient alpha of .91 was reported.46 In the present study, the alpha reliability coefficient for the BSI was .93. Scores for the BSI were calculated by summing the items in each of the nine symptom dimensions plus the sum of four additional items and dividing the grand total by 53, yielding the General Severity Index (GSI). High GSI scores indicate greater intensity and number of symptoms of psychological distress.

Personal Resource Questionnaire-84-PartTwo. The Personal Resource Questionnaire 84 Part Two (PRQ-85-2) is a 25-item global measure of perceived social support developed from Weiss’ five relational dimensions of social support. These dimensions consist of the provision of attachment/intimacy, social integration, opportunity for nurturant behavior, reassurance of worth, and the availability of material, emotional, and informational help.47 The PRQ-85-2 has been used to measure patient and family members perception of social support in health and illness states in both adults and adolescents.35B47 Initial content validity was established by three researchers in the domain of social support who evaluated the tool for clarity of

and Distress

41

content and sufficient representation of content domain. Construct validity was obtained by correlating the perceived social support scores with depression scores of the Beck Depression Index and trait anxiety scores in a sample of 181 adults.48 As hypothesized, significant moderate correlations were obtained between the PRQ-85-2 and the Beck Depression Index (r = -.33), and trait anxiety (r = -.39), indicating that the construct of social support is related to, but different from these mental health constructs.4g Principal component analysis revealed a threefactor structure (intimacy/assistance, integration/affirmation, and reciprocity) which accounted for 43.3% of the variance. A testretest reliability of .72 has been established.4g The PRQ-85-2 showed an alpha reliability coefficient of .91 in a sample (N = 112) of healthy adolescents.50 In this study, the alpha reliability coefficient was .82. Each item of the PRQ-85-2 was rated on a 7-point scale of perceived social support ranging from 7 (strongly agree) to 0 (strongly disagree). Scores range from 25 to 175. Higher scores indicate higher perceived social support. Although the MUIS, PRQ-85-2, and the parent version of the BSl (SCL-90-R) had been previously used in adolescent studies, a potential concern existed regarding adolescent’s understanding and comprehension of the items of all three measures. A small pilot study was conducted by this investigator to determine if the context of the items in the above three measures was appropriate to the experience of adolescents, as well as to determine whether it was readable by this age group. Preliminary content validity was established in a sample of well adolescents (N = 8) ranging from 14 to 18 years of age, who interpreted and stated the meaning of each of the items without any apparent difficulty in comprehension, as well as identified that the items tapped the constructs being examined. Procedure. The study was approved by the appropriate Institutional Review Boards before subject recruitment. Subjects were recruited from two regional cancer centers in the metropolitan northeast region of the

42

Kathleen

iYeuiI/e

TABLE 2. Means, Standard Deviations, and Ranges of the MUIS, BSI, and PRQ-85-Part

Scale BSI MUIS Total uncertainty Ambiguity Complexity PRQ-85-Part 2

Mean

SD

2

Range

Potential Range

.75

.45

.04-2.21

.OO-2.83

65.67 39.90 25.77 148.69

11.74 10.63 6.49 13.62

32-96 17-62 15-42 121-174

28-140 16-80 12-60 25-175

Abbreviations: SD, standard deviation; Personal Resource Questionnaire.

BSI, Brief Symptom

United States. All participants had been informed of their diagnosis, prognosis, and treatment plan before being approached for participation in the study. The investigator was introduced to the adolescent and parents. The purpose and nature of the study, confidentiality provisions, voluntary participation, and the right to withdraw at any time without jeopardizing their treatment was explained. After consent and assent forms were obtained, the adolescent information sheet, and the BSI, MUIS, and PRQ-85-2 were administered to participants in counterbalanced order. Of 64 adolescents approached, 4 refused to participate. The accrual of 60 adolescents took approximately 13 months. Results The means, standard deviations, and ranges for the BSI, MUIS, and PRQ-85-2 appear in Table 2. The potential range of scores for the GSI of the BSI is .OO to 2.83. In this study, the mean GSI score was higher, but not statistically significantly higher than a comparative group of healthy, nonpatient adolescents.43 Table 3 contains Pearson Product Moment correlations among perceived social support, uncertainty, and psychological distress. In support of hypothesis 1, perceived social support was negatively related to total uncertainty. Inverse relationships were also noted between the subscales ambiguity (r = - .31, P = .007) and perceived social support, and complexity (r = -.25, P = .02) and perceived social support. A moderate positive relationship between uncertainty and psychological distress was noted, thus hypothesis 2 was supported. Among the subscales of uncertainty, both ambiguity (r = .52,

[nventory;

MUIS,

Mishel

Uncertainty

in Illness

Scale;

PRQ,

P = .OOl) and complexity (r = .52, P = .OOl) showed a moderate-strong relationship with psychological distress. Hypothesis 3 was supported by the finding of a significant, albeit weak, inverse relationship between perceived social support and psychological distress. Hierarchical multiple regression analysis was used to test hypothesis 4. By itself, uncertainty significantly accounted for 30% of the explained variance in psychological distress (Table 4). After controlling for uncertainty by partial correlation, perceived social support did not significantly contribute to explaining the variance of psychological distress (Table 5). To investigate whether there were interaction effects between uncertainty and perceived social support on psychological distress, a third term representing this interaction between uncertainty and perceived social support was introduced into the regression equation. This term was significant (P = .008) TABLE 3. Correlations Among Uncertainty, Ambiguity, Complexity, Psychological Distress, and Perceived Social Support

Variables UNC

UNC

AMB

COM

PD

PSS

-

.55+ .52f .52+ -

-.30t -.31t -.25’ -.21* -

-

COM PD PSS “PC tP<

.05.

fP<

,001.

.Ol.

Abbreviations: UNC, uncertainty; COM, complexity; PD, psychological ceived social support.

AMB, ambiguity; distress; PSS, per-

Uncertainty,

Social

TABLE 4. Regression of Uncertainty on Psychologic Distress Variable

UNC

B

Beta

Sian T

.0155

.552

.OOOl

Multiple R = .552 Adjusted R Square = .292 R Square = .304 Abbreviation:

Support and

Distress

TABLE 6. Interaction Effect of Uncertainty and Perceived Social Support on Psychological Distress (IUP) Variable

B

Beta

Sign T

IUP

-5.88

-3.03

.008

Multiple R = .623 Adjusted R Square = .355 R Square = .388

UNC, uncertainty.

and accounted for 39% of the variance in psychological distress (Table 6). To help in the interpretation of this interaction, the independent variables were dichotomized into high and low scores at the median point, with the resulting cell means given in Table 7. Examination of the cell means of the dichotomized independent variables revealed that the most distress occurred when adolescents had high uncertainty, especially when they perceived social support to be low (N = 19).

Discussion Uncertainty regarding what will happen, what events mean, and what the consequences of events may be are important to any individual faced with cancer. Managing the uncertainty about illness and treatment may be a vital task in adaptation to those events.20 To interpret the meaning of illness-related events, stimuli must be clear, consistent, familiar, limited in number, and clear in boundaries.20 Events surrounding a diagnosis of cancer seldom meet these criteria. The symptoms experienced by the adolescent are generally ambiguous and may be novel. New situations such as seeking care in a TABLE 5. HierarchicalRegressionof Uncertainty and PerceivedSocial Support on Psychological Distress-PartialCorrelation Variable

UNC PSS

B

Beta

Sign T

.015 -.OOl

.53 - .047

.OOOl ,687

Multiple R = ,553 Adjusted R Square = .282 R Square = ,306 Abbreviations: cial support.

UNC, uncertainty;

43

PSS, perceived so-

large treatment center, meeting numerous new health care specialists, and initiation of treatment all represent a bombardment of unfamiliar cues, leading to uncertainty. In the uncertainty in illness theory, social support, credible authority, and education represent the resources available to assist in the interpretation of symptom pattern, event familiarity, and congruence between the expected and experienced illness-related events.20 Findings in this study revealed a significant, inverse relationship between perceived social support and total uncertainty, and its two components of ambiguity and complexity. Having others to clarify situations and to share information with reduced the uncertainty experienced in illness. Although not directly measured by the three instruments, this investigator frequently observed adolescents and parents sharing information with other patients and families about treatment, health care providers, and in general exchanging stories about their illness and hospital experiences. The moderate-to-strong relationships found between total uncertainty, its two components of ambiguity and complexity, and psychological distress show that the theoretical framework used in this study offers an approTable 7. CellMeans of the Dichotomized VariablesPerceived Social Support and Uncertainty Uncertainty

Perceived Social Support

Low High

Low

High

n= 13 M=.51

n= 19 M=.98

n=

16

n=32

n= 12

M=.58

M=.89

n = 29

n= 31

n=28

priate explanation about how adolescents process illness-related events, and supports the appraisal of uncertainty as an aversive or negative outcome at the time of diagnosis. The findings in this study tend to be consistent with the literature that supports an association between uncertainty and psychological distress in investigations of people experiencing the crisis of cancer.16,51 The relationship between social support and psychological distress when controlling for uncertainty was not supported; however, the combined effect of uncertainty and perceived social support was a significant predictor of psychological distress. A high level of uncertainty combined with a low level of perceived social support explained 39% of the variance in psychological distress (Table 5). In this study, adolescents with low social support and high uncertainty manifested the highest level of psychological distress. This important interaction effect provides a possible explanation for how social support influences mental health outcomes through intervening processes. These data are consistent with Mishel and Braden’s reporting of uncertainty as a mediating variable between social support and psychological adjustment. In this study, adolescents who had high uncertainty and low social support manifested the greatest psychological distress. A methodological concern exists as somatization, a BSI subscale, contains items that are commonly experienced in cancer treatment (nausea, upset stomach, feeling weak, numbness or tingling, and faintness/dizziness). Therefore, caution should be exercised in evaluating this subscale. Additionally, an ethical concern may have introduced a potential bias in this study. During the conduct of this study, if an adolescent manifested somatic symptoms, such as vomiting, the researcher was not introduced and/or declined introduction to the adolescent. Consequently, potential bias may have been introduced in that adolescents with greater somatic distress were not approached.

Implications Further research on the uncertainty in illness theory is needed to add to the existing body of knowledge concerning how individu-

als process illness-related events and to relate it to nursing practice. The results of this study support the relationships among perceived social support, uncertainty, and psychological distress among adolescents recently diagnosed with cancer. During the period of diagnosis, the often overwhelming diagnostic activity frequently creates uncertainty for adolescents and families. As credible authority figures and providers of social support, nurses and physicians can reduce uncertainty by promoting an atmosphere of trust and confidence. 37 Health care professionals can assist adolescents and their parents at the time of diagnosis in structuring meaning relative to the treatment environment by providing cues about the physical aspects of cancer treatment, its efficacy, and expectations about treatment outcomes.20 Keeping families well informed about treatment protocols, scheduling of treatments, side effects, activity guidelines, test results, as well as prognosis and consequences of treatment may reduce the uncertainty experienced in cancer by assisting adolescents to interpret environmental cues. While health care practitioners generally wait to give information to the patient and family until all the data is compiled, the period of waiting is often perceived by families as the most difficult aspect of the entire illness. Attempts to keep the family as best informed as realistically feasible and in a timely fashion should be a key priority. Uncertainty and the informational needs of patients with cancer have been identified as clinically relevant research priorities.52 Health professionals need to accurately assess adolescent concerns and determine the information preferences of adolescents, which may differ from parental needs, throughout the course of illness. Although knowledge and information are vital to both adolescent and parental understanding and management of cancer, skillful assessment is needed to determine their preference and congruence for either reducing or maintaining uncertainty about illness. Although this study supported the appraisal of uncertainty as a negative outcome at the time of diagnosis, the maintenance of uncertainty may be desired in individuals

45

who may choose not to know, or to view uncertainty as a positive outcome. Uncertainty reflects a dynamic process that may change over time, and continuous assessment of the appraisal of uncertainty is necessary to determine appropriate nursing interventions. Future research should include investigating the role of social support as a dynamic process in adolescents with cancer. Social support may be better understood if longitudinal studies were conducted to depict changes over the course of the illness. A limitation in this study was that the scale used to measure social support did not assess the negative element of social interactions. Although the majority of social support scales are not designed to measure the negative aspects of social support, further research identifying these negative aspects may be especially relevant for caregivers of individuals with cancer.8 Additionally, longitudinal studies investigating the appraisal of uncertainty throughout the course of the illness as well as with adolescents with other life-threatening illnesses is warranted to gain

greater understanding and insight into the phenomenon of uncertainty experienced during illness. Finding appropriate, valid, and reliable instruments remains a challenge for nurse researchers interested in expanding nursing knowledge related to seriously ill adolescents. In this study, reliability coefficients of the MUIS, BSI, and PRQ-85-2 were established. Of greater concern is the issue of validity. Although psychometric support of the validity of the measures was described, and with the exception of the somatization subscale of the BSI, all items appeared appropriate for measuring the constructs in this population, additional research is needed. Further psychometric testing and methodological research is warranted to establish greater validity in this population.

Acknowledgment I would like to acknowledge the assistance of Genevieve Foley, RN, MSN, OCN, CNAA, and Marilyn Bookbinder, RN, PhD, who so graciously supported and facilitated this research.

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