Peer Support and Psychosocial Pain Management Strategies for Children with Systemic Lupus Erythematosus

Abstract

This paper reviews information on Systemic Lupus Erythematosus (SLE) in children. Children with this chronic illness often experience pain related to their condition. They also can experience social isolation. This paper reviews psychosocial information on peer support and cognitive behavioral pain management strategies. The information presented in this paper provides new insights for health professionals assisting children and families in coping with psychological facets of this disease. Research focusing on ways by which peers and friends can support the child's use of psychological pain management strategies will provide new information for the literature.

Impact of Rheumatic Disease on Social Development in Adolescents and Young Adults

“…Social functioning has been ranked as a top area impacted by RMD in those aged [16][17][18][19][20][21][22][23][24][25], with this effect on their lives more important than pain/stiffness and functional impairments (8). Table 1 shows the range of social impacts due to RMD, meaning opportunities available for healthy peers can be missed in AYA.…”

“…Rheumatology HCPs have the unique, ongoing opportunity to assess social, mental and emotional functioning, in addition to physical outcomes, and intervene early in a non-psychiatric environment (11,25). This should start once RMD diagnosis is confirmed with an initial comprehensive psychosocial assessment (see chapter 2 for other areas to monitor).…”

“…Peers offer practical, emotional and social support (21), and can facilitate adjustment to chronic disease, coping with pain/illness and adherence by reducing general and illness-related stress (23). They can increase optimism and alleviate feelings of social isolation, which can assist the adoption of healthy behaviours, disease management skills (25), and acceptance of help with disease management (27). Conversely problematic unsupportive relationships lead to increased distress and disease activity (26,28), by being oppressive, underestimating the disease and not providing useful advice (29).…”

“…Reasons for withholding and not seeking support can include fear of rejection, pity, perceptions of being seen as vulnerable or different, dismissal of their problems/concerns as unimportant or alternatively overreactions and limiting of social activities/involvement. Sometimes others do not perceive these AYAs as chronically ill (7) in part due to the fluctuating and invisible nature of disease or not understanding the emotional impact of coping with daily pain and taking medications (25). Disclosure can be influenced by (26,30):…”

“…It is important that appropriate information regarding RMD, and the specific impact it has on that young person including pain and mood, is shared with peers, school and work to enable appropriate support (25,31). Greater support beyond educational attainment is needed (16,17), such as focusing on finding and keeping employment (see Table 2 for resources).…”