Connecting parents of children with chronic pain through art therapy

Parents play a crucial role in the rehabilitation process of a child with chronic pain as they represent a major aspect of the child's immediate social context (Vowles, Cohen, McCracken, & Eccleston, 2010). Parenting a child with chronic pain is stressful and associated with increased emotional, physical and psychological distress, as well as financial hardships and interpersonal difficulties (Hunfeld et al., 2001; Jordan et al., 2007; Palermo & Eccleston, 2009). Such difficulties for parents of children with chronic pain influence the child's pain experience. Notably, increased levels of parent emotional distress have been linked to higher levels of disability and child-reported pain (Sieberg et al., 2011; Caes et al., 2011). Additionally, children learn how to respond to their pain by observing their parent's own pain-related distress and protective behaviors directed towards them. For example, when a parent allows a child to avoid regular activities or attends to their child's pain symptoms frequently, the child learns that ceasing to function in the face of pain is an appropriate coping response (e.g., Simons, Claar & Logan, 2008). The relationship between parent functioning and a child's pain experience is reciprocal. Greater pain related-disability in children has been associated with increased levels of parent psychological distress and deficits in healthy family functioning (Palermo, Putnam, Armstrong, & Daily, 2007; Logan & Scharff, 2005) and research indicates that chronically witnessing a child in pain can have significant emotional and psychological effects on a parent (Eccleston, Crombez, Scotford, Clinch, & Connell, 2004; Jordan et al., 2007). Such evidence supports that there is a need to clinically address these challenges with interventions designed for parents only. Targeting the well-being of parents of children with chronic pain would not only provide direct benefits to parents themselves, but also has the potential to support optimization of their ability to support the child's recovery facilitating downstream behavioral changes in both parent and child's pain-related functioning. Despite assertions that we must better address parent pain-related distress separate from a child's treatment (Jordan et al., 2007; Palermo and Eccleston, 2009; Vowles et al., 2010) and the recent release of a Cochrane Review surmising that there is good efficacy for the inclusion of parents in psychological therapies aimed at pain reduction and management for children with painful conditions (Eccleston, Palermo, Fisher, & Law, 2012), there continues to be a dearth of parent-only interventions available for this population. To address this need, we implemented a pilot parent-only art therapy group curriculum for parents of children enrolled in an intensive day hospital pediatric pain rehabilitation program. The group art therapy intervention was designed specifically to target the struggles of parents of children with chronic pain (seeking support, managing feelings of burden, helplessness, isolation, fear, and lack of time for self [Jordan et al., 2007]). This parent-only art group is the first of its kind and represents an innovative approach to addressing the needs of parents in this treatment setting. The curriculum was intentionally designed for use with groups, rather than individuals. Group art therapy within a medical setting can be particularly beneficial because the group atmosphere inherently helps to increase universality of a medical condition, decrease feelings of isolation that medical treatments often trigger, and offer space for people with similar needs to provide mutual support for each other through collaborative problem solving, learning from the feedback of other members, and examining issues from different perspectives (Malchiodi, 2012b; Liebmann, 2003; Councill, 1999). Additionally, the modules developed for this intervention are intended to facilitate a parent's reflection of their own experiences, feelings, sacrifices, and difficulties since the onset of their child's pain, as opposed to asking the parents to retell their child's pain history and symptomology. In this way, parents are encouraged to use their unique voice and narrate their own story. Wiksell and Greco (2008) advise that when working with the parents of child with chronic pain it is necessary to work collaboratively with the family and give them an opportunity to be heard. In order for the parents to be heard, however, they must have a voice through which to speak and express their experience; thus, we offer art as a voice. Why art therapy? Art therapy is a master's level mental health profession based on a belief in the power of the creative arts process to enhance and improve emotional, physical, and mental well-being of individuals of all ages (Malchiodi, 2007). Art therapy is commonly used to facilitate symbolic and non-verbal communication. This can be helpful when a feeling or event is too overwhelming, difficult, confusing, or painful to speak about. Art therapy can be used independently or in collaboration with other disciplines for treatment, assessment, and research. (Malchiodi, 2007). Although evidenced-based practice is a relatively new phenomenon for the discipline of art therapy (Gilroy, 2006), the clinical benefits of art therapy are unique and numerable, as witnessed in practice by pioneers of the field, art therapists, treatment teams, and clients alike. Potential benefits of art therapy include relaxation and reduction of stress and stress-related symptoms, reduction in anxiety and negative mood, assistance with communicating and expressing difficult feelings and experiences, an increase in self-esteem and self-awareness, resolution of conflicts, grief, and problems, improvement in quality of life, development of interpersonal skills, personal empowerment, and an increase of creativity, imagination, and visual thinking skills (e.g. Kaplan, 2000; Malchiodi, 2007, 2003; Caddy et al., 2011). Presently, no literature exists on the application of art therapy with parents of children with chronic pain, but related research suggests potential benefits of using art therapy with this population. For example, in a case study with the family of a 6-year-old child living with chronic pain, Palmer and Shephard (2008) reflected that using an art-based approach was effective because the process offered the family a way to externalize their experiences and create concrete images to talk about. In this way, art offered emotional distance and validation of the experience by making it tangible for others to see (Malchiodi, 2012b). Another study, evaluating the efficacy of a creative arts intervention with family caregivers of patients with cancer, found that family caregivers reported significant reductions in stress and anxiety levels as well as an increase in positive emotions after participation in the creative arts intervention (Walsh, Culpepper Martin, & Schmidt, 2004). Finally, in a small, randomized controlled trial, conducted with healthy adults in a group setting, individuals were asked to write a 10-item `to do' list of their most immediate worries and concerns. Those who actively participated in group art therapy experienced significantly greater reductions in anxiety and negative mood symptoms as compared to the control group, who only viewed art (Bell & Robbins, 2007). The overarching clinical goals for the group were to (1) implement a supportive, therapeutic intervention designed specifically for parents of children with chronic pain, (2) encourage parents to identify and express feelings associated with their experience of their child's journey with pain, (3) facilitate self-expression through the arts, (4) increase parent's feelings of validation for the difficulties present within their experience as a caretaker of a child managing chronic pain, and (5) increase perceived social support. In this pilot project we evaluated parent's initial responses to the art therapy groups, measured by perceived satisfaction and helpfulness, in order to determine if this intervention could be a valuable, long-term addition to the interdisciplinary pain rehabilitation program and what changes are warranted to optimize the intervention. Given initial support for the therapeutic benefits of art therapy for adults, we hypothesized that parents would be satisfied with the group art therapy intervention and find it helpful (e.g., enjoy art as a means of self-expression).