The Cancer Loneliness Scale and Cancer-related Negative Social Expectations Scale: development and validation.
Quality of life research
Optimal Use of Diabetes Devices: Clinician Perspectives on Barriers and Adherence to Device Use
Journal of Diabetes Science and Technology
2017; 11 (3): 484-492
Implementation of Depression Screening and Global Health Assessment in Pediatric Subspecialty Clinics.
The Journal of adolescent health : official publication of the Society for Adolescent Medicine
Loneliness is a known risk factor for poor mental and physical health outcomes and quality of life in the general population, and preliminary research suggests that loneliness is linked to poorer health outcomes in cancer patients as well. Various aspects of the cancer experience contribute to patients feeling alone and misunderstood. Furthermore, loneliness theory suggests that negative social expectations, which may specifically relate to the cancer experience, precipitate and sustain loneliness. Cancer-specific tools are needed to assess key constructs of this theory. In the current study, we developed and tested measures of (1) loneliness attributed to cancer (i.e., cancer-related loneliness) and (2) negative social expectations related to cancer.First, we developed the items for the measures based on theory, prior research, and expert feedback. Next, we assessed the measures' psychometric properties (i.e., internal consistency and construct validity) in a diverse sample of cancer patients.The final products included a 7-item unidimensional Cancer Loneliness Scale and a 5-item unidimensional Cancer-related Negative Social Expectations Scale. Evidence of excellent reliability and validity was found for both measures.The resulting measures have both clinical and research utility.
View details for DOI 10.1007/s11136-017-1518-4
View details for PubMedID 28236266
View details for PubMedCentralID PMC5479729
Long-term fear of recurrence in young breast cancer survivors and partners.
2017; 26 (1): 22-28
Adolescents with chronic illness face greater risk of psychosocial difficulties, complicating disease management. Despite increased calls to screen for patient-reported outcomes, clinical implementation has lagged. Using quality improvement methods, this study aimed to investigate the feasibility of standardized screening for depression and assessment of global health and to determine recommended behavioral health follow-up, across three pediatric subspecialty clinics.A total of 109 patients aged 12-22 years (median = 16.6) who were attending outpatient visits for treatment of diabetes (80% type 1), inflammatory bowel disease, or cystic fibrosis completed the 9-item Patient Health Questionnaire (PHQ-9) depression and Patient-Reported Outcomes Measurement Information System (PROMIS) Pediatric Global Health measures on electronic tablets. Patients screening positive on the PHQ-9 received same-day behavioral health assessment and regular phone check-ins to facilitate necessary follow-up care.Overall, 89% of 122 identified patients completed screening during a 6-month window. Patients completed measures in a timely manner (within 3 minutes) without disruption to clinic flow, and they rated the process as easy, comfortable, and valuable. Depression scores varied across disease type. Patients rated lower global health relative to a previously assessed validation cohort. Depression and global health related significantly to certain medical outcomes. Fifteen percent of patients screened positive on the PHQ-9, of whom 50% confirmed attending behavioral health appointments within 6 months of screening.A standardized depression and global health assessment protocol implemented across pediatric subspecialties was feasible and effective. Universal behavioral health screening for adolescents and young adults living with chronic disease is necessary to meet programmatic needs in pediatric subspecialty clinics.
View details for DOI 10.1016/j.jadohealth.2017.05.030
View details for PubMedID 28830798
Relationship Between Depressive Symptoms and Social Cognitive Processing in Partners of Long-Term Breast Cancer Survivors
ONCOLOGY NURSING FORUM
2017; 44 (1): 44-51
Fear of a breast cancer recurrence is the most prevalent and disruptive source of distress for long-term survivors and their partners. However, few studies have focused on predictors of fear of recurrence. The aim of this study is to test the efficacy of the Social Cognitive Processing Theory (SCPT) in predicting fear of recurrence in long-term breast cancer survivors diagnosed at age 45 years or younger and their partners.In a large cross-sectional study, breast cancer survivors (n = 222) 3-8 years from diagnosis and their partners completed a survey assessing demographic characteristics, fear of recurrence, social constraints, and cognitive processing (intrusive thoughts and cognitive avoidance). Mediation analyses were conducted for survivors and partners separately to determine if cognitive processing would mediate the relationship between social constraints and fear of recurrence.Cognitive processing mediated the relationship between social constraints and fear of recurrence both for survivors [F(3,213) = 47.541, R(2) = 0.401, p < 0.001] and partners [F(3,215) = 27.917, R(2) = 0.280, p < 0.001). Demographic variables were not significant predictors of fear of recurrence.As predicted, cognitive processing mediated the relationship between social constraints and fear of recurrence. Results expand the utility of the SCPT in long-term survivors and their partners by supporting its use in intervention design. Copyright © 2015 John Wiley & Sons, Ltd.
View details for DOI 10.1002/pon.4008
View details for PubMedID 26490953
View details for PubMedCentralID PMC4840075
Positive changes among patients with advanced colorectal cancer and their family caregivers: a qualitative analysis
PSYCHOLOGY & HEALTH
2017; 31 (1): 94-109
Factors associated with depressive symptoms in young long-term breast cancer survivors.
Quality of life research
2016; 25 (8): 1991-1997
To determine (a) if depressive symptoms in partners of long-term breast cancer survivors (BCSs) could be predicted by social cognitive processing theory and (b) if partners of younger and older BCSs were differentially affected by the cancer experience..A cross-sectional, descriptive study using self-report questionnaires..Indiana University in Bloomington and 97 ECOG-ACRIN Cancer Research Group sites in the United States..508 partners of BCSs diagnosed three to eight years prior to the study. .Secondary data mediation analyses were conducted to determine if cognitive processing mediated the relationship between social constraints and depressive symptoms. Age-related differences on all scales were tested..Depressive symptoms; secondary variables included social constraints, cognitive processing (avoidance and intrusive thoughts), and potentially confounding variables..Cognitive processing mediated the relationship between social constraints and depressive symptoms for partners. Partners of younger BCSs reported worse outcomes on all measures than partners of older BCSs..As predicted by the social cognitive processing theory, cognitive processing mediated the relationship between social constraints and depressive symptoms. In addition, partners of younger BCSs fared worse on social constraints, intrusive thoughts, and depressive symptoms than partners of older BCSs. .Results provide support for using the social cognitive processing theory in an intervention design with partners of long-term BCSs to decrease depressive symptoms.
View details for DOI 10.1188/17.ONF.44-51
View details for Web of Science ID 000401134700011
View details for PubMedID 27991603
View details for PubMedCentralID PMC5181790
Family caregiving challenges in advanced colorectal cancer: patient and caregiver perspectives
SUPPORTIVE CARE IN CANCER
2016; 24 (5): 2017-2024
Long-term breast cancer survivors frequently report distress (i.e., depressive symptoms) that impacts their quality of life. Previous studies have found that negative social interactions ("social constraints") from partners contribute to long-term, unresolved cycling of intrusive thoughts and cognitive avoidance, resulting in psychological distress. However, these relationships have not been tested in long-term breast cancer survivors. Furthermore, the effect of partners' depressive symptoms on the survivors' depressive symptoms has not been tested within the context of these relationships. Therefore, the purpose of this study was to test relationships between breast cancer survivors' depressive symptoms and (1) social constraints, cognitive avoidance, and intrusive thoughts, and (2) partners' depressive symptoms.Data were from a cross-sectional descriptive study of breast cancer survivors (N = 222) 3-8 years post-diagnosis and their partners, who completed surveys assessing demographic characteristics, social constraints, intrusive thoughts, cognitive avoidance, and depressive symptoms. Structural equation modeling confirmatory path analyses were conducted to determine significant relationships between survivors' depressive symptoms and all other variables.Our model fits the data well. Breast cancer survivors' depressive symptoms were predicted by social constraints and intrusive thoughts. The relationship between survivors' depressive symptoms and partners' depressive symptoms was close but not significant.As hypothesized, depressive symptoms were predicted by social constraints and intrusive thoughts. Further research is needed to understand the possible relationship between survivors' long-term depressive symptoms and cognitive avoidance and partners' depressive symptoms. Our findings highlight the negative impact of social constraints from partners on psychological outcomes in long-term breast cancer survivors.
View details for DOI 10.1007/s11136-016-1241-6
View details for PubMedID 26883816
Avoidant coping and self-efficacy mediate relationships between perceived social constraints and symptoms among long-term breast cancer survivors.
Family caregivers of advanced colorectal cancer patients may be at increased risk for psychological distress. Yet their key challenges in coping with the patient's illness are not well understood. Soliciting both patient and caregiver perspectives on these challenges would broaden our understanding of the caregiving experience. Thus, the purpose of this research was to identify caregivers' key challenges in coping with their family member's advanced colorectal cancer from the perspective of patients and caregivers.Individual, semi-structured qualitative interviews were conducted with 23 advanced colorectal cancer patients and 23 primary family caregivers. Interview data were analyzed via thematic analysis.In nearly all cases, patient and caregiver reports of the caregiver's key challenge were discrepant. Across patient and caregiver reports, caregivers' key challenges included processing emotions surrounding the patient's initial diagnosis or recurrence and addressing the patient's practical and emotional needs. Other challenges included coping with continual uncertainty regarding the patient's potential functional decline and prognosis and observing the patient suffer from various physical symptoms.Findings suggest that eliciting the perspectives of both patients and caregivers regarding caregivers' challenges provides a more comprehensive understanding of their experience. Results also point to the need to assist caregivers with the emotional and practical aspects of caregiving.
View details for DOI 10.1007/s00520-015-2995-z
View details for Web of Science ID 000373157600012
View details for PubMedID 26530227
Cognitive and Situational Precipitants of Loneliness Among Patients With Cancer: A Qualitative Analysis
ONCOLOGY NURSING FORUM
2016; 43 (2): 156-163
Many breast cancer survivors feel constrained in discussing their cancer experience with others. Limited evidence suggests that social constraints (e.g., avoidance and criticism) from loved ones may negatively impact breast cancer survivors' global health, but research has yet to examine relationships between social constraints and common physical symptoms. Informed by social cognitive processing theory, this study examined whether perceived social constraints from partners and healthcare providers (HCPs) were associated with fatigue, sleep disturbance, and attentional functioning among long-term breast cancer survivors (N = 1052). In addition, avoidant coping and self-efficacy for symptom management were examined as potential mediators of these relationships.Long-term breast cancer survivors (mean years since diagnosis = 6) completed questionnaires assessing social constraints from partners and HCPs, avoidant coping, self-efficacy for symptom management, and symptoms (i.e., fatigue, sleep disturbance, and attentional functioning). Structural equation modeling was used to evaluate the hypothesized relationships among variables in two models: one focused on social constraints from partners and one focused on social constraints from HCPs.Both models demonstrated good fit. Consistent with theory and prior research, greater social constraints from both partners and HCPs were associated with greater symptom burden (i.e., greater fatigue and sleep disturbance, poorer attentional functioning). In addition, all relationships were mediated by avoidant coping and self-efficacy for symptom management.Findings are consistent with social cognitive processing theory and suggest that symptom management interventions may be enhanced by addressing the impact of social constraints from survivors' partners and HCPs on their coping and self-efficacy. Copyright © 2016 John Wiley & Sons, Ltd.
View details for DOI 10.1002/pon.4119
View details for PubMedID 26969374
Relations of meaning in life and sense of coherence to distress in cancer patients: a meta-analysis
2016; 25 (1): 2-10
To identify situations and thoughts that may precipitate or protect against loneliness experienced by patients with cancer. Qualitative. The hematology/oncology clinic at the Indiana University Melvin and Bren Simon Cancer Center, an outpatient oncology center in Indianapolis. Purposive sample of 15 patients undergoing treatment for multiple myeloma or non-Hodgkin lymphoma. Individual, semistructured qualitative interviews were conducted. Theoretical thematic analysis was used to analyze interview data.Factors that appeared to precipitate loneliness included several situations (e.g., physical isolation, social constraints such as criticism) and thoughts (e.g., unmet expectations for visits or questions about health, belief that others do not understand their cancer experience). Several situations (e.g., social support, normal routine) and thoughts (e.g., beliefs that time alone is desirable and that others' discomfort with cancer-related discussions is normative) appeared to protect against loneliness. Certain social situations were loneliness-inducing for some patients and not for others, suggesting that patients' thoughts about their situations, rather than the situations themselves, have the greatest impact on their loneliness. The current study fills gaps in loneliness theory by identifying cancer-related situations and thoughts that patients associate with their loneliness. Consistent with theory, patients reported feeling lonely when they had negative thoughts about their social situations. Findings inform nursing assessment and intervention strategies to incorporate into care plans. For instance, when conducting assessments, nurses should be more attentive to patients' satisfaction with their social environment than actual characteristics of the environment. Normalizing patients' experiences and encouraging positive thoughts about others' behavior may reduce patients' loneliness.
View details for DOI 10.1188/16.ONF.156-163
View details for Web of Science ID 000373613900428
View details for PubMedID 26906127
A meta-analysis of the relationship between social constraints and distress in cancer patients
JOURNAL OF BEHAVIORAL MEDICINE
2015; 38 (2): 294-305
Cancer patients report high rates of distress. The related constructs of meaning in life (MiL) and sense of coherence (SOC) have long been recognized as important factors in the psychological adjustment to cancer; however, both constructs' associations with distress have not been quantitatively reviewed or compared in this population. Informed by Park's integrated meaning-making model and Antonovsky's salutogenic model, the goals of this meta-analysis were the following: (1) to compare the strength of MiL-distress and SOC-distress associations in cancer patients; and (2) to examine potential moderators of both associations (i.e., age, gender, ethnicity, religious affiliation, disease stage, and time since diagnosis).A literature search was conducted using electronic databases. Overall, 62 records met inclusion criteria. The average MiL-distress and SOC-distress associations were quantified as Pearson's r correlation coefficients and compared using a one-way ANOVA.Both MiL and SOC demonstrated significant, negative associations with distress (r = -0.41, 95% CI: -0.47 to -0.35, k = 44; and r = -0.59, 95% CI: -0.67 to -0.51, k = 18, respectively). Moreover, the MiL-distress association was significantly smaller than the SOC-distress association (Qb = 10.42, df = 1, p < 0.01). Neither association varied by the tested moderators.Findings provide support for the clinical relevance of MiL and SOC across demographic and medical subgroups of cancer patients. The strength of the SOC-distress association suggests that incorporating aspects of SOC (e.g., the perceived manageability of life circumstances) into meaning-centered interventions may improve their effectiveness for distressed cancer patients.
View details for DOI 10.1002/pon.3798
View details for Web of Science ID 000368819100001
View details for PubMedID 25787699
Cancer Survivors' Uptake and Adherence in Diet and Exercise Intervention Trials: An Integrative Data Analysis
2015; 121 (1): 77-83
Social constraints on cancer-related disclosure have been associated with increased distress among cancer patients. The goals of this meta-analysis were: (1) to quantify the average strength of the relationships between social constraints and general and cancer-specific distress in cancer patients; and (2) to examine potential moderators of these relationships. A literature search was conducted using electronic databases, and 30 studies met inclusion criteria. Moderate, significant relationships were found between social constraints and both general distress (r = 0.37, 95 % CI 0.31-0.43) and cancer-specific distress (r = 0.37, 95 % CI 0.31-0.44). The relationship between social constraints and cancer-specific distress was stronger for studies of patients who, on average, had been diagnosed more recently. Relationships between social constraints and both general and cancer-specific distress did not vary by age or gender. Findings suggest that social constraints may be important to target in interventions to reduce distress in cancer patients, especially those who have been recently diagnosed.
View details for DOI 10.1007/s10865-014-9601-6
View details for Web of Science ID 000351135900011
View details for PubMedID 25262383
Caregiving experiences predict changes in spiritual well-being among family caregivers of cancer patients
2014; 23 (10): 1178-1184
The health benefits of diet and exercise interventions for cancer survivors are well documented. However, little is known regarding demographic and medical predictors of survivors' willingness to participate in diet and exercise intervention trials, study enrollment, intervention adherence, and study completion. To assist in interpreting the generalizability of trial findings and to improve the design of future trials, this study examined predictors of these process measures.An integrative data analysis was performed on data from 3 of the largest home-based diet and exercise intervention trials for cancer survivors (n = 23,841). Demographic and medical factors (ie, sex, race, age, time since diagnosis, and cancer type) were examined as predictors of willingness to participate, study enrollment, intervention adherence, and study completion in the pooled sample. A 99% confidence interval was used to determine statistical significance.Across trials, 11.1% of contacted survivors were willing to participate, and 5.7% were eligible and enrolled. Among enrollees, 53.4% demonstrated ≥75% adherence to the intervention, and 91.1% completed the study. Race (Caucasian vs others), age, time since diagnosis, and cancer type predicted survivors' willingness to participate (P < .01). All examined predictors were associated with the likelihood of study enrollment (P < .01). No significant predictors of intervention adherence or study completion were found among study enrollees (P ≥ .01).Cancer survivors' demographic and medical characteristics predicted their interest and participation in diet and exercise intervention trials. These findings have implications for the generalizability of results and can help to guide procedures used in future trials to enhance patient representation.
View details for DOI 10.1002/cncr.28978
View details for Web of Science ID 000346487500014
View details for PubMedID 25155573
Physical function and quality of well-being in fibromyalgia: The applicability of the goodness-of fit hypothesis
Health Psychology and Behavioral Medicine
2014; 2: 496-508
Fibromyalgia and hysterectomy: the impact on health status and health care costs
2012; 31 (11): 1585-1589
Although enhanced spiritual well-being has been linked to positive mental health outcomes among family caregivers of cancer patients, little is known regarding predictors of spiritual well-being in this population. The current study aimed to examine caregiving experiences as predictors of change in family caregivers' spiritual well-being during the initial months following the patient's cancer diagnosis.Seventy family caregivers of newly diagnosed cancer patients (74% female, mean age = 59 years) participated in this longitudinal survey. Caregivers completed baseline questionnaires shortly before staying with the patient at an American Cancer Society Hope Lodge. Baseline questionnaires assessed caregiving experiences (i.e., self-esteem related to caregiving, family support for providing care, impact of caregiving on finances, and impact of caregiving on one's schedule). In addition, caregivers' spiritual well-being (i.e., meaning in life, peace, and faith) was assessed at baseline and 4-month follow-up.In univariate analyses, all caregiving experiences studied were associated with one or more aspects of spiritual well-being at 4-month follow-up. However, in the multivariate analysis, the only caregiving experience associated with aspects of spiritual well-being at 4-month follow-up was caregivers' perceptions of family support. Specifically, lack of family support was associated with lower levels of meaning and peace.Findings point to the importance of family support in facilitating the search for meaning and peace shortly after a loved one's cancer diagnosis and suggest that interventions targeting caregivers' support system may enhance their spiritual well-being.
View details for DOI 10.1002/pon.3558
View details for Web of Science ID 000343860200013
View details for PubMedID 24839205
Is Coping Goodness-of-Fit Related to Depression and Mood Disturbance in Women with Fibromyalgia Syndrome?
JOURNAL OF MUSCULOSKELETAL PAIN
2012; 20 (3): 183-193
Women account for over 80 % of the fibromyalgia syndrome (FMS) population. Some researchers have noted that a large percentage of women with FMS have had hysterectomies. The purpose of this study was to examine the relationship between FMS and hysterectomies, and to examine the impact of having a hysterectomy on health status and health care costs. A sample of 573 American women, who were members of a health maintenance organization with a confirmed diagnosis of FMS, reported whether they had a hysterectomy. Participants completed the Quality of Well-Being Scale and their annual health care costs were calculated based on their medical records. Almost half of the sample (48.3 %) reported having had a hysterectomy, with 90.7 % reporting having had the surgery before their FMS diagnosis. Those who had a hysterectomy had significantly lower general health status and incurred higher health care costs than the women with FMS who did not have a hysterectomy. The percentage of women with FMS who had a hysterectomy was considerably higher than that found in the general population. In this study, having a hysterectomy and a diagnosis of FMS was related to poorer health status and higher health care costs.
View details for DOI 10.1007/s10067-012-2051-z
View details for Web of Science ID 000310379500008
View details for PubMedID 22875702