From the *Division of Pain Medicine, Department of Anesthesiology, Perioperative and Pain Medicine, Boston Children’s Hospital; † Department of Psychiatry, Boston Children’s Hospital; ‡ Harvard University Medical School; § Department of Nursing, Boston Children’s Hospital, Boston, Massachusetts. Address correspondence to Veronica Gaughan,MSN, RN, Pediatric Pain Rehabilitation Center, Children’s Hospital Boston at Waltham, 9 Hope Avenue, Waltham, MA 02453. E-mail: veronica.gaughan@childrens. harvard.edu Received March 14, 2012; Revised September 21, 2012; Accepted September 22, 2012. 1524-9042/$36.00 Ó 2014 by the American Society for Pain Management Nursing http://dx.doi.org/10.1016/ j.pmn.2012.09.002 Parents’ Perspective of Their Journey Caring for a Child with Chronic Neuropathic Pain --- Veronica Gaughan, MSN, RN, *,§ Deirdre Logan, PhD, *,†,‡ Navil Sethna, MD, *,‡ and Sandra Mott, PhD, CPN, RN-BC § - ABSTRACT : When a child has chronic pain, it affects the parents. Their response and how it is factored into their lives and family function was the phenomenon of interest that drove this study. The available literature was sparse, especially when the pain etiology was neuropathic. The purpose of this study was to describe the parents’ perception of the pain journey from the initial occurrence of their child’s pain through the labyrinth of treatment options to successful outcome, to gain a better understanding of parental beliefs about pain, and to learn how parental attitudes and behaviors relate to children’s response to treatment for chronic pain. Qualitative descriptive design was used to better understand the phenomenon from those who were the experts because they had experienced it. Parents whose child was enrolled in a pain rehabilitation program participated in open-ended interviews. The children/adolescents were 8–18 years old and diagnosed with complex regional pain syndrome or a related chronic pain condition. During data immersion, the investigators uncovered the pervasive underlying themes of suffering and disempowerment. In addition, the multiple meaning elements were grouped into three categories and supportive subcategories labeled as follows: parent distress, with subcategories schism in parenting, searching, and disabled parenting; and lack of control, with the subcategories family/community, fear, and empowerment. The voices of parents were heard in their description of the exhausting and difficult journey in search of pain relief for their child. Their comments provided insight into how they defined the child’s pain and their related parental role. Ó 2014 by the American Society for Pain Management Nursing Complex regional pain syndrome (CRPS) is a debilitating disease with an unclear pathophysiology (Schechter, Berde, & Yaster, 2003; Wilder, 2006). CRPS involves extremity pain with neuropathic features, which include hypersensitivity to touch along with circulatory changes, coldness, skin discoloration, and swelling of the affected limb(s), trophic changes, and movement disturbance (Sethna, Meier, Zurakowski, & Berde, 2007). Its prevalence in children is not well Pain Management Nursing, Vol 15, No 1 (March), 2014: pp 246-257 Original Article