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The Impact of Pediatric Brachial Plexus Injury on Families

Published:April 30, 2015DOI:https://doi.org/10.1016/j.jhsa.2015.03.020

      Purpose

      To determine the impact of brachial plexus injuries on families to best meet their clinical and social needs.

      Methods

      Our cross-sectional study included families with children between the ages of 1 and 18 years with birth or non-neonatal brachial plexus injuries (BPIs). The consenting parent or guardian completed a demographic questionnaire and the validated Impact on Family Scale during a single assessment. Total scores can range from 0 to 100, with the higher the score indicating a higher impact on the family. Factor analysis and item-total correlations were used to examine structure, individual items, and dimensions of family impact.

      Results

      A total of 102 caregivers participated. Overall, families perceived various dimensions of impact on having a child with a BPI. Total family impact was 43. The 2 individual items correlating most strongly with the overall total score were from the financial dimension of the Impact on Family Scale. The strongest demographic relationship was traveling nationally for care and treatment of the BPI. Severity of injury was marginally correlated with impact on the family. Parent–child agreement about the severity of the illness was relatively high.

      Conclusions

      Caretakers of children with a BPI perceived impact on their families in the form of personal strain, family/social factors, financial stress, and mastery. A multidisciplinary clinical care team should address the various realms of impact on family throughout the course of treatment.

      Type of study/level of evidence

      Prognostic II.

      Key words

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      References

        • van Ouwerkerk W.J.
        • van der Sluijs J.A.
        • Nollet F.
        • et al.
        Management of obstetric brachial plexus lesions: state of the art and future developments.
        Childs Nerv Syst. 2000; 16: 638-644
        • Pondaag W.
        • Malessy M.J.
        • van Dijk J.G.
        • et al.
        Natural history of obstetric brachial plexus palsy: a systematic review.
        Dev Med Child Neurol. 2004; 46: 138-144
        • Giuffre J.L.
        • Kakar S.
        • Bishop A.T.
        • et al.
        Current concepts of the treatment of adult brachial plexus injuries.
        J Hand Surg Am. 2010; 35 (quiz 688): 678-688
        • Foad S.L.
        • Mehlman C.T.
        • Ying J.
        The epidemiology of neonatal brachial plexus palsy in the United States.
        J Bone Joint Surg Am. 2008; 90: 1258-1264
        • Hoeksma A.F.
        • Wolf H.
        • Oei S.L.
        Obstetrical brachial plexus injuries: incidence, natural course and shoulder contracture.
        Clin Rehabil. 2000; 14: 523-526
        • Benjamin K.
        Part 1. Injuries to the brachial plexus: mechanisms of injury and identification of risk factors.
        Adv Neonatal Care. 2005; 5: 181-189
        • Golics C.J.
        • Basra M.K.
        • Finlay A.Y.
        • et al.
        The impact of disease on family members: a critical aspect of medical care.
        J R Soc Med. 2013; 106: 399-407
        • Raina P.
        • O'Donnell M.
        • Rosenbaum P.
        • et al.
        The health and well-being of caregivers of children with cerebral palsy.
        Pediatrics. 2005; 115: e626-e636
        • Mickley K.L.
        • Burkhart P.V.
        • Sigler A.N.
        Promoting normal development and self-efficacy in school-age children managing chronic conditions.
        Nurs Clin North Am. 2013; 48: 319-328
        • Hafetz J.
        • Miller V.A.
        Child and parent perceptions of monitoring in chronic illness management: a qualitative study.
        Child Care Health Dev. 2010; 36: 655-662
        • Lollar D.J.
        • Hartzell M.S.
        • Evans M.A.
        Functional difficulties and health conditions among children with special health needs.
        Pediatrics. 2012; 129: e714-e722
        • Narakas A.O.
        Obstetric brachial plexus injuries.
        in: Lam D.W. The Paralysed Hand (Hand and Upper Injuries) Volume 2. Churchill Livingstone, Edinburgh1987: 116-135
        • Stein R.E.
        • Jessop D.J.
        The impact on family scale revisited: further psychometric data.
        J Dev Behav Pediatr. 2003; 24: 9-16
        • Stein R.E.
        • Riessman C.K.
        The development of an impact-on-family scale: preliminary findings.
        Med Care. 1980; 18: 465-472
        • Firat T.
        • Oskay D.
        • Akel B.S.
        • et al.
        Impact of obstetrical brachial plexus injury on parents.
        Pediatr Int. 2012; 54: 881-884
        • Karadavut K.I.
        • Uneri S.O.
        Burnout, depression and anxiety levels in mothers of infants with brachial plexus injury and the effects of recovery on mothers' mental health.
        Eur J Obstet Gynecol Reprod Biol. 2011; 157: 43-47
        • Ndoro S.
        Effective multidisciplinary working: the key to high-quality care.
        Br J Nurs. 2014; 23: 724-727
        • Chen Y.R.
        • Yang Y.
        • Wang S.C.
        • et al.
        Multidisciplinary care improves clinical outcome and reduces medical costs for pre-end-stage renal disease in Taiwan.
        Nephrology (Carlton). 2014; 19: 699-707
        • Naber C.M.
        • Water-Schmeder O.
        • Bohrer P.S.
        • et al.
        Interdisciplinary treatment for vestibular dysfunction: the effectiveness of mindfulness, cognitive-behavioral techniques, and vestibular rehabilitation.
        Otolaryngol Head Neck Surg. 2011; 145: 117-124
        • Krab L.C.
        • Oostenbrink R.
        • de Goede-Bolder A.
        • et al.
        Health-related quality of life in children with neurofibromatosis type 1: contribution of demographic factors, disease-related factors, and behavior.
        J Pediatr. 2009; 154: 420-425
        • Graf A.
        • Landolt M.A.
        • Mori A.C.
        • et al.
        Quality of life and psychological adjustment in children and adolescents with neurofibromatosis type 1.
        J Pediatr. 2006; 149: 348-353
        • Eiser C.
        • Varni J.W.
        Health-related quality of life and symptom reporting: similarities and differences between children and their parents.
        Eur J Pediatr. 2013; 172: 1299-1304
        • White-Koning M.
        • Arnaud C.
        • Dickinson H.O.
        • et al.
        Determinants of child-parent agreement in quality-of-life reports: a European study of children with cerebral palsy.
        Pediatrics. 2007; 120: e804-e814
        • Oskay D.
        • Oksuz C.
        • Akel S.
        • et al.
        Quality of life in mothers of children with obstetrical brachial plexus palsy.
        Pediatr Int. 2012; 54: 117-122
        • Akel B.S.
        • Oksuz C.
        • Oskay D.
        • et al.
        Health-related quality of life in children with obstetrical brachial plexus palsy.
        Qual Life Res. 2013; 22: 2617-2624
        • Bellew M.
        • Kay S.P.
        Early parental experiences of obstetric brachial plexus palsy.
        J Hand Surg Br. 2003; 28: 339-346
        • Alyanak B.
        • Kilincaslan A.
        • Kutlu L.
        • et al.
        Psychological adjustment, maternal distress, and family functioning in children with obstetrical brachial plexus palsy.
        J Hand Surg Am. 2013; 38: 137-142
        • Squitieri L.
        • Larson B.P.
        • Chang K.W.
        • et al.
        Understanding quality of life and patient expectations among adolescents with neonatal brachial plexus palsy: a qualitative and quantitative pilot study.
        J Hand Surg Am. 2013; 38: 2387-2397
        • Dellve L.
        • Samuelsson L.
        • Tallborn A.
        • et al.
        Stress and well-being among parents of children with rare diseases: a prospective intervention study.
        J Adv Nurs. 2006; 53: 392-402
        • Kieckhefer G.M.
        • Trahms C.M.
        • Churchill S.S.
        • et al.
        A randomized clinical trial of the building on family strengths program: an education program for parents of children with chronic health conditions.
        Matern Child Health J. 2014; 18: 563-574
        • Ho E.S.
        • Ulster A.A.
        Evaluation of an education day for families of children with obstetrical brachial plexus palsy.
        Fam Syst Health. 2011; 29: 206-214
        • Majnemer A.
        • Shevell M.
        • Law M.
        • et al.
        Indicators of distress in families of children with cerebral palsy.
        Disabil Rehabil. 2012; 34: 1202-1207
        • Chen C.
        • Jeruss S.
        • Terrin N.
        • et al.
        Impact on family of survivors of congenital diaphragmatic hernia repair: a pilot study.
        J Pediatr Surg. 2007; 42: 1845-1852
        • Almesned S.
        • Al-Akhfash A.
        • Mesned A.A.
        Social impact on families of children with complex congenital heart disease.
        Ann Saudi Med. 2013; 33: 140-143