Delivering More Effective Lung Cancer Support Groups: Applying Best Practices From the United States, United Kingdom, and Australia to Strengthen Skills and Inspire Facilitators

Abstract

Background and context: Globally, 1.8 million people are diagnosed with lung cancer annually. Compared with other cancers, lung cancer patients experience higher levels of distress and greater unmet physical and emotional needs. A significant unmet need is social support. Face-to-face support groups can meet this need and may also may increase feelings of control and decrease distress. While lung cancer patients tend to prefer lung cancer-specific over general cancer groups, for many reasons these groups can be challenging to start and maintain. As a result, there are not enough groups available to meet the need. Aim: To provide guidance to those with struggling lung cancer groups, facilitators on three continents were surveyed to better understand their challenges and elicit creative ideas, collect practical tips and gather best practices for starting and maintaining successful lung cancer support groups. Strategy/Tactics: To understand the experiences of lung cancer facilitators, direct feedback was needed. To identify facilitators, member organizations of the Global Lung Cancer Coalition (GLCC) were tapped. Comprised of 37 charity organizations, GLCC is the international “voice” of the lung cancer community. Three GLCC organizations (one each from the United States-US, United Kingdom-UK and Australia-AUS) that either directly offer lung cancer support groups or manage networks of groups, agreed to participate. Program/Policy process: A 21 question online survey was sent to 131 support group facilitators, 7 in AUS, 42 in the UK and 82 in the US. Questions included length of time the group had been running, how often it met, average number of participants and other group/facilitator characteristics. Respondents were asked to identify their greatest challenges in group maintenance and solutions used to overcome those challenges. Knowledge gained from the survey and an extensive literature review were incorporated into the Lung Cancer Support Group Troubleshooting Guide. Outcomes: With a 56% completion rate, specific results varied by demographic area. Groups in AUS and the UK tended to have more participants, were more likely to be cofacilitated by nurses and held in public places. More groups in the US were based in hospitals and run by social workers. 75% of facilitators in the UK and AUS and 71% of those in the US said their groups were successful. What was learned: Creative solutions to lung cancer support group challenges were shared and keys to successful groups identified. Suitable for facilitators at all skills levels, the resulting Guide includes creative solutions for overcoming specific barriers and resource constraints. Widely distributed in the US, a small survey found that 91% of Guide users found it somewhat or very helpful. While written for lung cancer groups, any kind of support group, anywhere in the world that is struggling can benefit from the suggestions and ideas offered by the Guide.