Browsing by Author "Tanabe, Paula"

Background

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Abstract

Background: Sickle Cell Disease (SCD) is a genetic hematological disorder that affects more than 7 million people globally (NHLBI, 2009). It is estimated that 50% of adults with SCD experience pain on most days, with 1/3 experiencing chronic pain daily (Smith et al., 2008). Persons with SCD also experience higher levels of pain catastrophizing (feelings of helplessness, pain rumination and magnification) than other chronic pain conditions, which is associated with increases in pain intensity, pain behavior, analgesic consumption, frequency and duration of hospital visits, and with reduced daily activities (Sullivan, Bishop, & Pivik, 1995; Keefe et al., 2000; Gil et al., 1992 & 1993). Therefore effective interventions are needed that can successfully be used manage pain and pain-related outcomes (e.g., pain catastrophizing) in persons with SCD. A review of the literature demonstrated limited information regarding the feasibility and efficacy of non-pharmacological approaches for pain in persons with SCD, finding an average effect size of .33 on pain reduction across measurable non-pharmacological studies. Second, a prospective study on persons with SCD that received care for a vaso-occlusive crisis (VOC; N = 95) found: (1) high levels of patient reported depression (29%) and anxiety (34%), and (2) that unemployment was significantly associated with increased frequency of acute care encounters and hospital admissions per person. Research suggests that one promising category of non-pharmacological interventions for managing both physical and affective components of pain are Mindfulness-based Interventions (MBIs; Thompson et al., 2010; Cox et al., 2013). The primary goal of this dissertation was thus to develop and test the feasibility, acceptability, and efficacy of a telephonic MBI for pain catastrophizing in persons with SCD and chronic pain.

Methods: First, a telephonic MBI was developed through an informal process that involved iterative feedback from patients, clinical experts in SCD and pain management, social workers, psychologists, and mindfulness clinicians. Through this process, relevant topics and skills were selected to adapt in each MBI session. Second, a pilot randomized controlled trial was conducted to test the feasibility, acceptability, and efficacy of the telephonic MBI for pain catastrophizing in persons with SCD and chronic pain. Acceptability and feasibility were determined by assessment of recruitment, attrition, dropout, and refusal rates (including refusal reasons), along with semi-structured interviews with nine randomly selected patients at the end of study. Participants completed assessments at baseline, Week 1, 3, and 6 to assess efficacy of the intervention on decreasing pain catastrophizing and other pain-related outcomes.

Results: A telephonic MBI is feasible and acceptable for persons with SCD and chronic pain. Seventy-eight patients with SCD and chronic pain were approached, and 76% (N = 60) were enrolled and randomized. The MBI attendance rate, approximately 57% of participants completing at least four mindfulness sessions, was deemed acceptable, and participants that received the telephonic MBI described it as acceptable, easy to access, and consume in post-intervention interviews. The amount of missing data was undesirable (MBI condition, 40%; control condition, 25%), but fell within the range of expected missing outcome data for a RCT with multiple follow-up assessments. Efficacy of the MBI on pain catastrophizing could not be determined due to small sample size and degree of missing data, but trajectory analyses conducted for the MBI condition only trended in the right direction and pain catastrophizing approached statistically significance.

Conclusion: Overall results showed that at telephonic group-based MBI is acceptable and feasible for persons with SCD and chronic pain. Though the study was not able to determine treatment efficacy nor powered to detect a statistically significant difference between conditions, participants (1) described the intervention as acceptable, and (2) the observed effect sizes for the MBI condition demonstrated large effects of the MBI on pain catastrophizing, mental health, and physical health. Replication of this MBI study with a larger sample size, active control group, and additional assessments at the end of each week (e.g., Week 1 through Week 6) is needed to determine treatment efficacy. Many lessons were learned that will guide the development of future studies including which MBI strategies were most helpful, methods to encourage continued participation, and how to improve data capture.

For most parents there is no imaginable event more devastating than the death of their child. Nevertheless, while bereaved parents grieve they are also expected to carry on with their life. The day-to-day activities that were once routine for these parents may now be challenging due to the emotional turmoil they are experiencing. To date parental bereavement has been described as complex, intense, individualized, and life-long and their grief responses are interwoven with their daily activities, but the nature of their daily life challenges are not known.

This dissertation highlights the significance of how parents respond to their bereavement challenges because bereaved parents have higher morbidity and mortality rates than non-bereaved parents or adults who have lost their spouse or parents. Many bereaved parents in their daily routines include activities that allow them to maintain a relationship with their deceased child. These behaviors have been described as “continuing bonds”, but with this dissertation the continuing bonds concept is analyzed to provide a clear conceptual definition, which can be used for future research.

Using the Adaptive Leadership Framework as the theoretical lens and a mixed method, multiple case study design, the primary study in this dissertation aims to provides knowledge about the challenges parents face in the first six months following the death of their child, the work they use to meet these challenges, and the co-occurrence of the challenges, and work with their health status. Bereaved parents challenges are unique to their individual circumstances, complex, interrelated and adaptive, as they have no easy fix. Their challenges were pertaining to their everyday life without their child and classified as challenges related to: a) grief, b) continuing bonds, c) life demands, d) health concerns, f) interactions, and g) gaps in the health care system. Parents intuitively responded to the challenges and attempted to care for themselves. However, the role of the healthcare system to assist bereaved parents during this stressful time so that their health is not negatively impacted was also recognized. This study provides a foundation about parental bereavement challenges and related work that can lead to the development and testing of interventions that are tailored to address the challenges with a goal of improving bereaved parents health outcomes.

Sickle cell disease (SCD) is the most common genetic blood disorder in the United States (US) and Jamaica and primarily affects individuals of African descent. SCD can result in severe and debilitating complications, including vaso-occlusive crises and organ damage. To prevent these complications SCD requires complex self-management. SCD is associated with significantly shortened lifespans in both countries. Many personal and background factors including, perceived stigma, demographics (country, age, race, sex, socioeconomic status) and clinical (disease severity, hydroxyurea use, genotype) characteristics may influence self-management strategies and health-related quality of life (QoL) in SCD. These characteristics have not been explored fully in either country and there are many differences between countries in how SCD is managed and stigma is perceived. This dissertation aims to develop knowledge related to the relationships between SCD self-management, stigma of SCD, and health-related QoL.

A systematic literature review was conducted to appraise the current state of knowledge surrounding stigma of SCD. Conclusions from this review revealed that 1) sources of stigma were varied including institutions, healthcare systems and providers, and interpersonal relationships; 2) stigma had negative impacts on participants’ social, psychological, and physiological well-being; 3) stigma had resulted in poor patient-provider relationships and altered care-seeking behaviors in individuals with SCD, and 4) there are gaps in the literature regarding the influence of sources of stigma on self-management and QoL.

The primary study of this dissertation utilized a cross sectional, convergent parallel mixed methods design (individual interviews and self-report surveys). Participants were interviewed about disease self-management strategies and how sources of stigma influence these strategies. Demographic and clinical characteristics were assessed using questionnaires. Quantitative measures were used to assess perceived stigma [SCD Health-Related Stigma Scale (SCD-HRSS) and Measure of Sickle Cell Stigma (MoSCS)] and health-related QoL [Adult Sickle Cell Quality of Life Measures (ASCQ-Me)]. Because there were no publication using the ASCQ-Me to assess health-related QoL in adults with SCD, aside from psychometric studies, a pilot study was conducted evaluating the feasibility of using the ASCQ-Me prior to the primary dissertation study. Use of ASCQ-Me was determined to be feasible.

There were several important findings in the primary dissertation study. Employment and low disease severity were significant predictors of health-related QoL. Nonetheless, participants reported experiencing stigma from family, friends, and people in the workplace and school that impeded their access to the social support and financial resources needed to effectively self-manage. Self-management strategies were similar between the two countries with the exception of there being less opioid use and a greater focus on nutrition in Jamaica. Lastly, participants in both countries, regardless of demographic and clinical characteristics, reported perceiving stigma from healthcare settings. As a result, they altered their self-management in many ways including avoiding or delaying seeking care and pain management. Findings from this study will be used to generate hypotheses for future studies seeking to improve self-management and QoL of individuals with SCD in the presence of stigma.

In the United States of America, Sickle Cell Disease (SCD) affects 100,000 Americans, predominantly African Americans. In North Carolina (NC), there are approximately 5,578 people living with SCD, which includes both children and adults. Of those affected, 39% are 18 years of age or younger. Strokes are a major disease-related complication that children with SCD too often experience. Some complications include motor and cognitive delays, neurodevelopmental delays (NDD), decline in academic learning and attainment, poor test scores, high school dropout and/or unemployment (later in life). The purpose of this dissertation was to address the problems of stroke prevention and NDD in children with SCD. Therefore, we analyzed hydroxyurea (HU) adherence as well as transcranial Doppler (TCD) screening prevalence and proportion in a statewide Medicaid sample in an attempt to evaluate primary stroke prevention in children ages 2 to 16 years old with SCD. The purpose of this dissertation was achieved through a systematic literature review that explored the prevalence, severity, and associated risk factors for NDD in children with SCD less than or equal to 5 years. Secondary data analyses of the NC Medicaid database was used to examine the following: 1) HU adherence rates for 12- and 24-month cohorts; 2) associations of individual related sociodemographic characteristics with HU adherence; 3) the prevalence rate of children with annual TCD screenings; 4) the proportion of children with zero, 1, 2, 3 or more TCD screening claims; and 5) the prevalence rate of TCD screening claims for age, sex, residential location, and HU adherence. The methods used in the data chapters were descriptive statistics, frequencies, percentages, and chi-square was used to determine differences in HU adherence for both the 12 and 24-month cohorts (Chapter 3), Cochran-Armitage Trend Test and the Cochran-Mantel-Haenszel Test were used to evaluate the proportion of TCD claims with 2, 3, and more levels (Chapter 4), and a Poisson Regression was used to fit the effect of TCD screening claims on sociodemographic characteristics, HU adherence, and to determine the rate of TCD screenings for each of the individual predictor variables (Chapter 4). The findings from this dissertation highlighted a wide range of motor and language deficits among children ages 0 to 5 years old with SCD (Chapter 2). Other major findings included low HU utilization (Chapter 3) and low TCD screening prevalence (Chapter 4) among children ages 2 to 16 years old with SCD on NC Medicaid. Additionally, children with poor HU adherence were less likely to have TCD screening claims (Chapter 4). Therefore, tailored interventions are needed to help mitigate the problems of poor HU utilization as well as TCD screening rates among children with SCD.

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