Applying a Positive Youth Development Perspective to Observation of Bereavement Camps for Children and Adolescents.

A positive youth development perspective focuses on recognizing psychosocial strengths and providing social environments that contribute to the development of these in children and adolescents. Bereavement camps can provide such an environment as they help children cope with the death of someone close. The purpose of this study was to observe bereavement camps through the lens of positive youth development to determine the applicability of the eight features of positive developmental settings for describing bereavement camps (safety, appropriate structure, supportive relationships, opportunities to belong, positive norms, support for efficacy, skill building opportunities, integration of family and community). Observational notes were recorded by researchers during on-site visits to three different weekend bereavement camps. Results identified how each element of positive developmental settings was exemplified in either typical camp activities or bereavement-focused activities. For example, assigning campers to cabin groups based on age and gender provided opportunities to belong, and giving campers a comfort object and a big buddy provided supportive relationships. Findings were used to create a positive developmental settings observation checklist for use by bereavement camp practitioners to assess the extent to which each camp provides the requisite elements for promoting positive youth development.

Perceived sibling relationships of sexual minority youth.

The purpose of this study was to examine the relationships of sexual minority youth and their siblings. The participants were 56 lesbian, gay, bisexual, or transgender individuals ranging in age from 18 to 24 years, who reported information about a total of 107 siblings. Respondents completed a demographic data questionnaire as well as adapted versions of the Sibling Closeness Scale (SCS) and the Sibling Approval of Sexual Behavior Scale (SASBS) to describe their relationship with each of their siblings. Analyses examined birth order and gender in relation to outness to siblings as well as sibling closeness and approval. Results provide information about disclosure of LGBT status to siblings, elements of closeness and acceptance in sibling relationships of sexual minority youth, and the significance of gender and birth order in these sibling relationships.

Custodial grandmothers' psychological distress, dysfunctional parenting, and grandchildren's adjustment.

An adaptation of the Family Stress Model (FSM) with hypothesized linkages between family contextual factors, custodial grandmothers' psychological distress, parenting practices, and grandchildren's adjustment was tested with structural equation modeling. Interview data from 733 custodial grandmothers of grandchildren between ages 4-17 revealed that the effect of grandmothers' distress on grandchildren's adjustment was mediated by dysfunctional parenting, especially regarding externalizing problems. The effects of contextual factors on grandchildren's adjustment were also indirect. The model's measurement and structural components were largely invariant across grandmothers' race and age, as well as grandchildren's gender and age. Group differences were more prevalent regarding the magnitude of latent means for model constructs. We conclude that parenting models like the FSM are useful for investigating custodial grandfamilies.

Evaluation and validation of the patient acceptable symptom state (PASS) in patients with ankylosing spondylitis.

OBJECTIVE: The Patient Acceptable Symptom State (PASS) constitutes an absolute level of patient well-being and represents an ambitious target for disease management. We explored contributors to PASS, validated the PASS concept, and assessed thresholds of self-reported outcomes below which patients considered themselves in PASS. METHODS: Patients with ankylosing spondylitis completed a questionnaire that included self-reported assessments of pain, fatigue, disease activity, function, patient global, quality of life (QOL), and whether they considered their current disease state satisfactory or not. Stepwise logistic regression was used to assess contributors to PASS. PASS was validated by analyzing proportions of patients reporting need for a rheumatologist and who were in current flare. PASS thresholds for self-reported outcomes were estimated using an anchoring method based on the patient's opinion and targeting the 75th percentile of the cumulative distribution. RESULTS: PASS data were available for 291 patients, of whom 169 (58%) were in PASS. Significant contributors were age (Exp[B] 1.05; P = 0.003), patient global disease activity (Exp[B] 0.79; P = 0.008), and function (Bath Ankylosing Spondylitis Functional Index [BASFI]; Exp[B] 0.72; P < 0.001). PASS reflected need to consult the rheumatologist and current flare (71% and 73% correctly classified, respectively) and significantly contributed to QOL (B = -5.99; 95% confidence interval -7.16, -4.08). PASS thresholds were 5.0 for patient global disease activity, 5.0 for total back pain, 22.8 for fatigue, 4.8 for disease activity (Bath Ankylosing Spondylitis Disease Activity Index), and 4.0 for function (BASFI). CONCLUSION: A majority of patients (58%) reported being in PASS. PASS thresholds for pain and function were unexpectedly high, possibly suggesting adaptation to the consequences of the disease.

Development and validation of a simple tape-based measurement tool for recording cervical rotation in patients with ankylosing spondylitis: comparison with a goniometer-based approach.

OBJECTIVE: To compare a tape-based tool for measuring cervical mobility in patients with ankylosing spondylitis (AS) with the widely practiced goniometer-based approach. METHODS: We developed a novel tape-based approach to measurement of lateral cervical rotation of the neck that is minimally affected by flexion/extension movements of the neck. This requires measurement of the difference between a mark at the suprasternal notch and the tragus of the ear. Rotation score is measured in centimeters and constitutes the difference in length between the 2 extremes of cervical rotation (http://www.arthritisdoctors.org/researcher.html). We assessed the tape-based and goniometer-based methods in a total of 263 patients from 3 countries, Canada (n = 205), Australia (n = 29), and Colombia (n = 29), that included patients from community and tertiary-based practice. Intra- and interobserver reliability was assessed in a subset of 44 patients by ANOVA and a 2-way mixed effects model. The Bath AS Disease Activity (BASDAI) and Function (BASFI) Indices, and the modified Stoke AS Spinal Score (mSASSS), were also recorded to assess construct validity by correlation coefficient and regression analysis. Responsiveness was assessed in a subset of 33 patients that were either randomized to anti-tumor necrosis factor-a therapy:placebo (n = 22) or received open label infliximab (n = 4) or pamidronate (n = 7) over a period of 24 weeks. RESULTS: Scores obtained with the tape-based method were normally distributed, while those obtained using the goniometer were skewed towards normal values. Reliability for the goniometer-based approach was excellent [intraclass correlation coefficient (ICC) > 0.90] and very good for the tape-based approach (ICC > 0.80). Significant correlations were noted between age, disease duration, function and structural damage scores, and scores obtained with both methods. Responsiveness was high using raw scores obtained with the goniometer (standardized response mean > 0.80) but was not evident when the grading scheme proposed for the Bath AS Metrology Index (BASMI) was employed. CONCLUSION: The tape-based approach we describe provides a simple, feasible, and reliable index of cervical rotation that is comparable to the information obtained from the use of a goniometer. If the goniometer-based approach is used, raw scores should be used in the calculation of responsiveness rather than the grading scheme suggested in the BASMI.

Does height influence the assessment of spinal and hip mobility measures used in ankylosing spondylitis?

OBJECTIVE: It is not known if height contributes to the variability in mobility measures in patients with ankylosing spondylitis (AS) and whether any measures should be reported corrected for height. We examined the contribution of height to the variability of mobility measures in patients with a diverse spectrum of AS disease. METHODS: We assessed the 9 mobility measures comprising the Bath AS and Edmonton AS Metrology Indices (BASMI and EDASMI) in a total of 205 patients. The contribution of height to the variability in mobility scores was analyzed descriptively according to tertiles of height, and also by combined probability scatter plots that combined each individual's height with the corresponding score for either the composite index or each of the 9 spinal mobility measures. Hierarchical (sequential) linear regression was used to assess the contribution of height to the variance in EDASMI and BASMI composite scores and individual measures, adjusted for age, disease duration, and the Bath AS Disease Activity Index. RESULTS: Descriptive data and correlation analysis revealed significant differences related to height for both the EDASMI and the BASMI, particularly for EDASMI cervical rotation, EDASMI lumbar side flexion, chest expansion, lumbar flexion, and intermalleolar distance. Combined probability scatter plots showed that for a particular height there was a wide distribution of mobility scores and only intermalleolar distance showed some relation to height. Hierarchical regression analysis showed that height contributed significantly, although relatively minimally to the variance of both the EDASMI (3.1%; p

Development and validation of the Edmonton Ankylosing Spondylitis Metrology Index.

OBJECTIVE: Assessment of spinal and hip mobility has been recommended by the Assessments in Ankylosing Spondylitis (AS) Working Group for clinical trials and record keeping, although suggested measures primarily reflect structural damage. Our objective was to validate a simple, 4-item composite measure of spinal and hip mobility, the Edmonton AS Metrology Index (EDASMI). METHODS: We assessed the EDASMI and the Bath AS Metrology Index (BASMI) using a total of 263 patients from 3 countries: Canada (n = 205), Australia (n = 29), and Colombia (n = 29). Intra- and interobserver reliability were assessed in a subset of 44 patients. Construct validity with respect to disease activity (Bath AS Disease Activity Index [BASDAI]), function (Bath AS Functional Index [BASFI]), and structural damage (modified Stoke AS Spinal Score [mSASSS]) was analyzed using correlation and hierarchical regression. Responsiveness was assessed in a subset of 33 patients who received either anti-tumor necrosis factor alpha therapy (n = 26) or pamidronate (n = 7) over 24 weeks. RESULTS: In contrast to the EDASMI, BASMI scores covered a limited range, with 70% of patients demonstrating a score < or =3 (range 0-10) and 4 of 5 individual measures demonstrating substantial floor effects. Both measures were highly reliable (intraclass correlation coefficient >0.90) and demonstrated similar construct validity (EDASMI correlated with disease duration [0.52], BASDAI [0.24], BASFI [0.61], Bath Ankylosing Spondylitis Radiology Index [0.79], mSASSS [0.75]; P < 0.001 for all). The change in EDASMI score was significant after 24 weeks of therapy (standardized response mean 0.40; P = 0.03), but change in the BASMI was not significant. CONCLUSION: The EDASMI is a simple, rapid, and reliable tool for the assessment of spinal mobility in AS that is responsive to therapeutic intervention.