Coping with Congenital Hand Differences

Abstract

Purpose Although functional outcomes following reconstruction for congenital hand differences are frequently described, much less is known regarding children’s ability to cope with psychosocial effects of these conditions. We qualitatively explored stress and coping mechanisms among children following reconstructive surgery for congenital hand differences. Methods Forty patients and their parents participated in semi-structured interviews examining stress related to hand functioning and appearance, emotional responses to stress, and coping strategies. Interviews were audio-taped, transcribed, and analyzed thematically. A consensus taxonomy for classifying content evolved from comparisons of coding by two reviewers. Themes expressed by participants were studied for patterns of connection and grouped into broader categories. Results In this sample, 58% of children and 40% of parents reported stress related to congenital hand differences, attributed to functional deficits (61%), hand appearance (27%), social interactions (58%), and emotional reactions (46%). Among the 18 children who reported stress, 43% of parents were not aware of the presence of stress. Eight coping strategies emerged, including humor (12%), self-acceptance (21%), avoidance (27%), seeking external support (30%), concealment (30%), educating others (9%), support programs (21%) and religion (24%). Conclusions Although children with congenital hand differences often experience emotional stress related to functional limitations and aesthetic deformities, many apply positive coping mechanisms that enhance self-esteem and self-esteem. Clinicians caring for children with congenital hand differences should inform families about potential sources of stress in order to direct resources toward strengthening coping strategies and support systems. Level of Evidence Level IV-Case series

Assessment of Self‐Determination in Adolescents with Neonatal Brachial Plexus Palsy

“…Studies show that children with persistent conditions develop coping strategies or “survivor sense” that could ultimately increase their SDet [19,28‐30]. During daily activities, children with NBPP might encounter physical challenges, and these challenges could cause frustration, stress, or even social difficulties [19].…”

“…During daily activities, children with NBPP might encounter physical challenges, and these challenges could cause frustration, stress, or even social difficulties [19]. Coping strategies, such as social support or the recognition from peers or parents, could mediate the psychosocial impact of their physical impairment [29]. In a similar study that investigated self‐concept in youth with NBPP, the authors report that a greater level of social support is associated with better self‐concept and fewer social difficulties [19].…”

“…In addition to teachers/educators, caregivers, and providers should be aware of the psychosocial context of adolescents with NBPP and that by encouraging personal development and fulfillment SDet can improve, despite physical/functional differences. Studies show that children with persistent conditions develop coping strategies or "survivor sense" that could ultimately increase their SDet [19,[28][29][30]. During daily activities, children with NBPP might encounter physical challenges, and these challenges could cause frustration, stress, or even social difficulties [19].…”

Do Patient- and Parent-reported Outcomes Measures for Children With Congenital Hand Differences Capture WHO-ICF Domains?

“…Psychosocial function is highly relevant for children with CHD [42,81]. In fact, Franzblau et al [30] found that 58% of children and 40% of parents reported stress related to their CHD. The authors found that 58% of this stress resulted from social interactions, 46% resulted from emotional reactions, and 27% resulted from hand appearance.…”

“…Furthermore, children and their parents invariably experience considerable psychological stress from the appearance of the involved limb. Previous studies demonstrate that parents of children with CHD frequently mourn the loss of their expectations for their unborn child, and children with CHD have difficulty coping with the functional and aesthetic manifestations of these conditions [12,30]. In this context, patient-and parent-reported outcome measures (PROMs) that can accurately and efficiently capture these experiences could provide important insight into the effect of CHDs on a child's psychosocial functioning and development.…”