How Campers with Profound Intellectual and Multiple Disabilities and Their Camp Counselors Attune During a Medical Specialty Camp

Across different camps and camper populations, researchers have found that youth with all kinds of diagnoses can benefit from attending medical specialty camps (MSCs) (Gillard et al., 2011;Lake et al., 2021).However, it is unknown how youth with profound intellectual and multiple disabilities (PIMD) are impacted by attending MSCs as they have rarely been directly included in research.Youth with PIMD require considerable care support (Tadema & Vlaskamp, 2010) and often rely on non-language forms of communication such as facial expressions, movements, and vocalizations (Stephenson & Dowrick, 2005) that are difficult for new caregivers to understand.This means youth with PIMD are rarely away from their immediate caregivers, usually family members (Nakken & Vlaskamp, 2007).Yet Shelton et al. (2006) described how caregivers of youth with disabilities saw MSCs as one of few safe opportunities they trusted for their child.This provides evidence that MSCs can provide the necessary support for youth with PIMD which is a prerequisite to having positive camp experiences but does not explain how it happens at camp.Within a residential care setting, Griffiths and Smith (2016) developed a theory of attuning between individuals with PIMD and their caregivers.In it, attuning is the process by which communication partners move "towards or away from each other cognitively and emotionally (p.130)" An individual with PIMD and their caregiver's attunement is observable in the relationship between how each individual shows awareness of the other's wants (Empathy) and how they cooperate toward those wants (Cooperation).Griffiths and Smith (2016) used recorded videos of interactions to code observable behaviors along the two continua of Empathy and Cooperation creating four dimensions as behaviors could be high or low on each.In this theory, highly attuned individuals, high on both Empathy and Cooperation, are sharing the same focus such as a toy, or each other, and are engaging with that shared focus toward the same goal.An example would be one person directing a puppet while the other watches and laughs.This aligns with research on attunement in youth-adult mentor relationships which found highly attuned mentors focused on mutual sharing and attending to the mentee's verbal and nonverbal signs (Pryce, 2012).When individuals are low on both Empathy and Cooperation, they are not aware of each other's wants nor working cooperatively toward those wants.This is exemplified by non-engagement such as one person is trying to get the other's attention, but their attempt is ignored as the other focuses on something else.As both individuals must attune to each other, individuals with PIMD have equal agency in interactions.When youth with PIMD go to MSCs, camp staff become their temporary caregivers working to understand them and meet their needs, or said more simply, working to attune with them.This study sought to use video analysis to understand what attunement between youth with PIMD and their counselor looked like and how it happened during one program within an MSC.Methods This project was part of a study on the impact of a residential camp session for youth with PIMD at a Midwestern MSC approved by Indiana University's Institutional Review Board.The camp session lasted for six days and had summer camp activities such as recreation, pool, music, art, and climbing.The campers' care needs meant the camper to counselor ratio was 1:1.