Non-Pharmacological Approaches for Pain Management in Sickle Cell Disease: Development of a Mindfulness-Based Intervention

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.

Leading from the Edge: Marginal Leadership at Cultural Crossroads

If a church reflects its larger community, it will have more dynamic interactions among different people. Current U.S. communities consist of very diverse people who have different socioeconomic and cultural backgrounds. Since the mid 20th century, various immigrant communities who have dissimilar cultural, religious, and linguistic traditions have accelerated the need of change in American churches. The drastic cultural change has demanded churches to equip their lay and clergy leaders with multicultural competencies for effective ministries.

My thesis explores imaginative leadership in cultural crossroads. Emphasizing the leadership imagination of cross-cultural ministry, I approach it in biblical, theological, and missional perspectives. In this dynamic cultural milieu, the study topic may help the church renew its ecclesial purpose by seeing cross-cultural ministry as a creative opportunity to reach out to more diverse people of God. I begin with a conceptual framework for cross-cultural ministry and cultural intelligence. Then I explain why cross-cultural ministry is significant and how it enhances the spirit of Christ Jesus. As I develop the thesis, I discuss leadership challenge and development in the cross-cultural ministry context. This thesis may contribute to equipping lay and clergy leaders by overcoming the homogeneous ‘in-group’ mindset in the church.

The primary focus is on developing marginal leadership of church in the post-Christendom era. Church leaders must creatively hold the tension between the current church context and Christian faith resources and seek a hopeful resolution as a third way through integrative thought process. While conventional leadership emphasizes a better choice out of the given options, marginal leadership takes time for integrative thought process to seek a new direction for the future. Conventional leaders take the center with their power, status, and prestige, but marginal leaders position themselves on the edge. Leading from the edge is a distinctive cross-cultural leadership and is based on the servant leadership of Jesus Christ who put himself as a servant for the marginalized. By serving and relating to others on the margin, this imaginative leadership may make appropriate changes desired in today’s American churches.

In addition to academic research, I looked into the realities of cross-cultural leadership in the local churches through congregational studies. I speculated that church leadership involves both laity and clergy and that it can be enhanced. All Christians are called to serve the Lord according to their gifts, and it is crucial for lay and clergy persons to develop their leadership character and skills. In particular, as humans are contextualized with their own cultures, church leaders often confront great challenges in cross-cultural or multicultural situations. Through critical thoughts and imaginative leadership strategies, however, they can overcome intrinsic human prejudice and obstacles.

Through the thesis project, I have reached four significant conclusions. First, cultural intelligence is an essential leadership capacity for all church leaders. As the church consists of more diverse cultural people today, its leaders need to have cultural competencies. In particular, cross-cultural leaders must be equipped with cultural intelligence. Cross-cultural ministry is not a simple byproduct of social change, but a creative strategy to open a door to bring God’s reconciliation among diverse people. Accordingly, church leaders are to be well prepared to effectively cope with the challenges of cultural interactions. Second, both lay and clergy leaders’ imaginative leadership is crucial for leading the congregation. While conventional leadership puts an emphasis on selecting a better choice based on the principle of opportunity cost, imaginative leaders critically consider the present church situations and Christian faith values together in integrative thoughts and pursue a third way as the congregation’s future hope. Third, cross-cultural leadership has a unique characteristic of leading from the edge and promotes God’s justice and peaceable relationships among different people. By leading the congregation from the edge, church leaders may experience the heart of Christ Jesus who became the friend of the marginalized. Fourth, the ‘homogeneous unit principle’ theory has its limit for today’s complex ‘inter-group’ community context. The church must be a welcoming and embracing faith community for all people. Cross-cultural ministry may become an entrance door for a more peaceable and reconciling life among different people. By building solidarity with others, the church may experience a kingdom reality.

This thesis focuses on the mission of the church and marginal leadership of church leaders in ever-changing cultural crossroads. The church becomes a hope in the broken and apathetic world, and Christians are called to build relationships inside and beyond the church. It is significant for church leaders to be faithfully present on the margin and relate to diverse people. By consistently positioning themselves on the margin, they can build relationships with new and diverse people and shape a faithful life pattern for others.