Low Impact of Congenital Hand Differences on Health-Related Quality of Life

Ardon, Monique S.; Janssen, Wim G. M.; Hovius, Steven E.R.; Stam, Henk J.; Selles, Ruud W.

doi:10.1016/j.apmr.2011.09.004

Cited by 28 publications

(17 citation statements)

References 24 publications

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“…Children with less affected digits have higher emotional imbalance where as children with too severe a disability accept the fact that they cannot have a normal hand and they are emotionally resigned. 17,18 Our study could found similar emotional reactions. The self-report of a child with severe disability was that she used only one hand to grip the bicycle handle as she considered the affected limb to be of no use at all.…”

Section: Discussionsupporting

confidence: 77%

“…The World Health Organization defines health related quality of life as an individual's perception of their position of life in the context of culture and value systems in which they live, and in relation to their goals, expectations, and concerns. 8 Since the quality of life is subjective in nature, children need to be encouraged to self-report their experiences and perspectives whenever possible, even though the parents perspectives can be a counterbalance 9,10 Information regarding substantial difficulties faced by children with hand differences in the execution of daily tasks and involvement in school and extracurricular activities are minimally known. 6,11 However, environmental factors which include the individual's family environment and society have greater impact on individual's functioning and disability.…”

Section: Introductionmentioning

confidence: 99%

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Qualitative analysis of impact of congenital hand differences on children visiting a tertiary care hospital

Thampi

Bhat

Rao

et al. 2019

Clinical Epidemiology and Global Health

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Congenital hand differences (CHD), being a visible deficiency, has immense negative influence on the physical, psychological and social wellbeing of a child. Purpose: The children and their mothers were given an opportunity to express their perspectives about the disability and its impact on the daily life of the child. Method: OLOGY: 12 children (6-15 years) and their mothers were enrolled between January to June 2017. Indepth interviews were conducted to know the experiences and perspectives of children with congenital hand differences and their mothers. Transcribed verbatim of interviews were analyzed by manual coding followed by thematic analysis. Results: Children expressed that they performed most of their daily activities with partial or minimal involvement of their parents. They exercised a certain degree of independence in meeting their self-care needs by adapting to the disability and reported that they were cared and supported by family members. Although these children encountered stigma from society, they were able to cope with the situation by accepting their disability with positive support from their parents. Majority of mothers and children reported that the surgical intervention has improved the physical functioning of hand. All the participants reported that they did not depend on any orthosis for daily activities. The orthosis provided were only to retain the correction of their deformities and was used mostly as a night splint. Conclusion: Children with congenital hand differences were capable of independent living and showed positive coping towards the societal stigma. Surgical treatment has improved the function and confidence of their children as stated by their mothers.

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Section: Discussionsupporting

confidence: 77%

Section: Introductionmentioning

confidence: 99%

Qualitative analysis of impact of congenital hand differences on children visiting a tertiary care hospital

Thampi

Bhat

Rao

et al. 2019

Clinical Epidemiology and Global Health

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“…Additionally, self-concept and self-esteem varies by gender, and the severity of the deformity. 3,4 However, much less is known regarding coping mechanisms among children with congenital hand differences, and research from other pediatric disciplines can help provide context for our findings. For example, among children with burn injuries, the presence of a burn injury in a visible area, such as the hands, is more strongly associated with psychological consequences than the overall severity of the burn.…”

Section: Discussionmentioning

confidence: 99%

“…3 These aesthetic and functional differences can hinder children’s psychosocial functioning throughout life by causing social anxiety and depression. 4,5 Hands are one of the most noticed parts of the body second only to the face, and are essential for daily tasks and interactions with other people and the environment, making them difficult to conceal. 3,6 Although many studies have focused on functional outcomes following reconstruction, much less is known regarding the social and emotional outcomes of congenital hand differences.…”

Section: Introductionmentioning

confidence: 99%

Coping with Congenital Hand Differences

Franzblau

Chung

Carlozzi

et al. 2015

Plastic and Reconstructive Surgery

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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

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“…Although reconstructive surgery, if needed, is typically managed at an early age, many children born with upper limb differences experience lasting aesthetic and functional differences. These differences may hinder psychosocial functioning throughout life, causing social anxiety and depression (Ardon et al, 2012;Franzblau et al, 2015;Joachim & Acorn, 2000).…”

Section: Public Interest Statementmentioning

confidence: 99%

The impact of therapeutic camp on children with congenital hand differences

et al. 2021

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The goal of this study was to evaluate the efficacy of hand camp by investigating camp participation and outcomes on self-esteem, physical function, activity participation, and peer relationships. Forty patients with a congenital hand difference seen in hand clinic between the ages of 10 and 13 were eligible to attend hand camp. Participation involved completion of questionnaires at 3-time points: before camp (Pre-Camp Questionnaires), immediately following camp (Immediate Follow-Up Questionnaires) and 6-months after camp (Final Follow-Up Questionnaires). The questionnaires administered included: Demographic Form, Patient Reported Outcomes Measurement Information System (PROMIS), Rosenberg Self-Esteem Scale (RSES), and Camp Expectation Questionnaire. Thirty-six patients were included (22 females, 14 males), average age of 11.17 years. Diagnoses included: central deficiency, transverse deficiency, radial longitudinal deficiency, ulnar longitudinal deficiency, and overgrowth conditions. PROMIS Upper Extremity Function significantly improved from pre-camp to immediate follow-up (46.24 to 48.95; p = 0.016), as well as at pre-camp and final follow-up (46.24 to 49.44; p = 0.008). PROMIS Peer Relation scores significantly improved from pre-camp to immediate follow-up (52.26 to 57.91; p = 0.002). RSES results indicated significant improvements in self-esteem between pre-camp and immediate follow-up (23.92 to 26.81; p < 0.001), and between pre-camp and final follow-up (23.92 to 25.72;

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Low Impact of Congenital Hand Differences on Health-Related Quality of Life

Cited by 28 publications

References 24 publications

Qualitative analysis of impact of congenital hand differences on children visiting a tertiary care hospital

Qualitative analysis of impact of congenital hand differences on children visiting a tertiary care hospital

Coping with Congenital Hand Differences

The impact of therapeutic camp on children with congenital hand differences

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