Major lessons learned from a nationally-based community–academic partnership: Addressing sibling adjustment to childhood cancer.

Abstract

Prolonged, intensive treatment protocols for childhood cancer disrupt family routines and daily functioning, with effects extending to all family members. Despite their unique needs, siblings of children with cancer receive limited attention from community organizations and researchers. Community-academic partnerships may foster research that effectively assesses and addresses siblings' unmet needs. In this article, "community" refers to siblings of children with cancer who participate in SuperSibs!, a national nonprofit organization for siblings of children with cancer. This article (a) describes a replicable model for successful community-academic partnerships: the Sibling Research Advisory Board (SRAB) and (b) articulates "lessons learned" from this partnership, including documenting the ability to recruit a representative sample through a community organization. Lessons emerged from an iterative process of discussion and revision that involved all SRAB members. This case study describes approaches to overcoming practical obstacles in community-partnered research planning and implementation. To meet the common goals of identifying and addressing unmet sibling needs, SRAB partners learned to establish a common language, identify each team member's unique expertise, and acknowledge differences in approach (e.g., methodology, pace of accomplishment) between research and community service. SRAB's ability to recruit a representative sample was achieved through close collaboration with SuperSibs! and implementation of active recruitment strategies to overcome barriers to research participation. Protection of community member privacy was emphasized alongside methodological rigor. Community-academic partnerships enable research with high-need, hard-to-access populations. Proactively identifying and addressing common pitfalls of community-academic partnerships promotes community engagement and acceptability and facilitates high-quality research.

Improving support to siblings of children with cancer through a community-academic partnership.

“…Researchers and ALSF staff worked continuously to reconcile their goals and perspectives and maintain appropriate roles throughout the project. For more examples of overcoming challenges in community-academic partnerships, see Long et al (2015).…”

“…A formative and continuing requirement of this group is to establish and sustain an effective working model in which all members feel valued and united in their goals. Lessons learned through the development of this collaboration highlighted the importance of (a) defining a shared mission to foster a culture of collaboration, reconciling differences as they arose, and developing a shared language; (b) balancing responsibilities of research and service by acknowledging that support programs are needed immediately (service goal) but that establishing a methodologically rigorous evidence base for intervention (research goal) takes more time; and (c) ensuring adequate representation of diversity to ensure a wider-spread impact of research and support programs (Long et al, 2015). For more information on SPARCCC, see http://sparcccpartnership.wixsite.com/sparccc.…”

“…The SuperSibs program has a long-standing mission to create resources for siblings that are evidence-based (Long et al, 2015), and anecdotal feedback from families—consisting mainly of online surveys querying parents’ satisfaction—has been positive. However, the SuperSibs program has had limited systematic evaluation or feedback directly from siblings.…”

The needs of siblings of children with a life-threatening illness, part 2: Psychometric validation of the IBesFEMS

“…The IBesFEMS was designed for siblings of children with various lifethreatening illnesses and has the added advantage of assessing siblings' perceived levels of satisfaction with the degree to which their needs are met as well as the importance of each need. Despite the emergence of a care philosophy for pediatric palliative care, there has been very little research documenting the experience of siblings, and knowledge about their specific needs is fragmented (Jones, 2006;MSSS, 2006;Contro & Scofield, 2006;2012;Long et al, 2015). Professionals involved in this practice context therefore have very few theoretical referents and limited means with which to assess the needs of these children in the family or care environment.…”

“…Despite the emergence of a care philosophy for pediatric palliative care, there has been very little research documenting the experience of siblings, and knowledge about their specific needs is fragmented (Jones, 2006; MSSS, 2006; Contro & Scofield, 2006; 2012; Long et al, 2015). Professionals involved in this practice context therefore have very few theoretical referents and limited means with which to assess the needs of these children in the family or care environment.…”