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Clinical paper| Volume 127, P44-50, June 2018

Burden of caregiving after a child’s in-hospital cardiac arrest

      Abstract

      Objective

      To describe caregiver burden among those whose children survive in-hospital cardiac arrest and have high risk of neurologic disability, and explore factors associated with burden during the first year post-arrest.

      Methods

      The study is a secondary analysis of the Therapeutic Hypothermia after Paediatric Cardiac Arrest In-Hospital (THAPCA-IH) trial. 329 children who had an in-hospital cardiac arrest, chest compressions for >2 min, and mechanical ventilation after return of circulation were recruited to THAPCA-IH. Of these, 155 survived to one year, and caregivers of 138 were assessed for burden. Caregiver burden was assessed at baseline, and 3 and 12 months post-arrest using the Infant Toddler Quality of Life Questionnaire for children <5 years old and the Child Health Questionnaire for children >5 years. Child functioning was assessed using the Vineland Adaptive Behaviour Scales Second Edition (VABS-II), the Paediatric Overall Performance Category (POPC) and Paediatric Cerebral Performance Category (PCPC) scales, and caregiver perception of global functioning.

      Results

      Of 138 children, 77 (55.8%) were male, 77 (55.8%) were white, and 109 (79.0%) were <5 years old at the time of arrest. Caregiver burden was greater than reference norms at all time points. Worse POPC, PCPC and VABS-II scores at 3 months post-arrest were associated with greater caregiver burden at 12 months. Worse global functioning at 3 months was associated with greater burden at 12 months for children <5 years.

      Conclusions

      Caregiver burden is substantial during the first year after paediatric in-hospital cardiac arrest, and associated with the extent of the child’s neurobehavioural dysfunction.

      Keywords

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      References

        • Raina P.
        • O’Donnell M.
        • Schwellnus H.
        • Rosenbaum P.
        • King G.
        • Brehaut J.
        • et al.
        Caregiving process and caregiver burden: conceptual models to guide research and practice.
        BMC Pediatr. 2004; 4: 1
        • Pilapil M.
        • Coletti D.J.
        • Rabey C.
        • DeLaet D.
        Caring for the caregiver: supporting families of youth with special health care needs.
        Curr Probl Pediatr Adolesc Health Care. 2017; 47: 190-199
        • Chambers H.G.
        • Chambers J.A.
        Effects of caregiving on the families of children and adults with disabilities.
        Phys Med Rehabil Clin N Am. 2015; 26: 1-19
        • Phillips R.S.
        • Scott B.
        • Carter S.J.
        • Taylor M.
        • Peirce E.
        • Davies P.
        • et al.
        Systematic review and meta-analysis of outcomes after cardiopulmonary arrest in childhood.
        PLoS One. 2015; 10: e0130327
        • Moler F.W.
        • Meert K.
        • Donaldson A.E.
        • Nadkarni V.
        • Brilli R.J.
        • Dalton H.J.
        • et al.
        In-hospital versus out-of-hospital pediatric cardiac arrest: a multicenter cohort study.
        Crit Care Med. 2009; 37: 2259-2267
        • Meert K.L.
        • Donaldson A.
        • Nadkarni V.
        • Tieves K.S.
        • Schleien C.L.
        • Brilli R.J.
        • et al.
        Multicenter cohort study of in-hospital pediatric cardiac arrest.
        Pediatr Crit Care Med. 2009; 10: 544-553
        • Moler F.W.
        • Donaldson A.E.
        • Meert K.
        • Brilli R.J.
        • Nadkarni V.
        • Shaffner D.H.
        • et al.
        Multicenter cohort study of pediatric out-of-hospital cardiac arrest.
        Crit Care Med. 2011; 39: 141-149
        • Meert K.L.
        • Slomine B.S.
        • Christensen J.R.
        • Telford R.
        • Holubkov R.
        • Dean J.M.
        • et al.
        Family burden after out-of-hospital cardiac arrest in children.
        Pediatr Crit Care Med. 2016; 17: 498-507
        • Rashid M.
        • Goez H.R.
        • Mabood N.
        • Damanhoury S.
        • Yager J.Y.
        • Joyce A.S.
        • et al.
        The impact of pediatric traumatic brain injury (TBI) on family functioning: a systematic review.
        J Pediatr Rehabil Med. 2014; 7: 241-254
        • Kuo D.Z.
        • Cohen E.
        • Agrawal R.
        • Berry J.G.
        • Casey P.H.
        A national profile of caregiver challenges among more medically complex children with special health care needs.
        Arch Pediatr Adolesc Med. 2011; 165: 1020-1026
        • Stacin T.
        • Wade S.L.
        • Walz N.C.
        • Yeates K.O.
        • Taylor H.G.
        Family adaptation 18 months after traumatic brain injury in early childhood.
        J Dev Behav Pediatr. 2010; 31: 317-325
        • Aitken M.E.
        • McCarthy M.L.
        • Slomine B.S.
        • Ding R.
        • Durbin D.R.
        • Jaffe K.M.
        • et al.
        Family burden after traumatic brain injury in children.
        Pediatrics. 2009; 123: 199-206
        • Wade S.L.
        • Gerry Taylor H.
        • Yeates K.O.
        • Drotar D.
        • Stancin T.
        • Minich N.M.
        • et al.
        Long-term parental and family adaptation following pediatric brain injury.
        J Pediatr Psychol. 2006; 31: 1072-1083
        • Guyard A.
        • Fauconnier J.
        • Mermet M.A.
        • Cans C.
        Impact on parents of cerebral palsy in children: a literature review.
        Arch Pediatr. 2011; 18: 204-214
        • Moler F.W.
        • Silverstein F.S.
        • Holubkov R.
        • Slomine B.S.
        • Christensen J.R.
        • Nadkarni V.M.
        • et al.
        Therapeutic hypothermia after in-hospital cardiac arrest in children.
        N Engl J Med. 2017; 376: 318-329
        • Moler F.W.
        • Silverstein F.S.
        • Meert K.L.
        • Clark A.E.
        • Holubkov R.
        • Browning B.
        • et al.
        Rationale, timeline, study design, and protocol overview of the Therapeutic Hypothermia after Paediatric Cardiac Arrest trials.
        Pediatr Crit Care Med. 2013; 14: e304-15
        • Holubkov R.
        • Clark A.E.
        • Moler F.W.
        • Slomine B.S.
        • Christensen J.R.
        • Silverstein F.S.
        • et al.
        Efficacy outcome selection in the therapeutic hypothermia after paediatric cardiac arrest trials.
        Pediatr Crit Care Med. 2015; 16: 1-10
        • Teasdale G.
        • Jennett B.
        Assessment of coma and impaired consciousness. A practical scale.
        Lancet. 1974; 2: 81-84
        • HealthActCHQ
        Confidential Scoring Rules. Infant and Toddler Quality of Life Questionnaire-97 (ITQOL-97).
        HealthActCHQ, Boston, MA2008
        • Raat H.
        • Landgraf J.M.
        • Oostenbrink R.
        • Moll H.A.
        • Essink-Bot M.L.
        Reliability and validity of the Infant and Toddler Quality of Life Questionnaire (ITQOL) in a general population and respiratory disease sample.
        Qual Life Res. 2007; 16: 445-460
        • HealthActCHQ
        The CHQ Scoring and Interpretation Manual.
        HealthActCHQ, Boston, MA2008
        • Epstein N.
        • Baldwin L.
        • Bishop D.
        The McMaster family assessment device.
        J Marital Fam Ther. 1983; 9: 171-180
        • Sparrow S.
        • Cicchetti D.
        • Balla D.
        Vineland Adaptive Behavior Scales.
        2nd ed. Pearson Assessment, Minneapolis, MN2005
        • Fiser D.H.
        Assessing the outcome of pediatric intensive care.
        J Pediatr. 1992; 121: 68-74
        • Limperopoulos C.
        • Majnemer A.
        • Shevell M.I.
        • Rosenblatt B.
        • Rohlicek C.
        • Tchervenkov C.
        • et al.
        Functional limitations in young children with congenital heart defects after cardiac surgery.
        Pediatrics. 2001; 108: 1325-1331
        • Caris E.C.
        • Dempster N.
        • Wernovsky G.
        • Butz C.
        • Neely T.
        • Allen R.
        • et al.
        Anxiety scores in caregivers of children with hypoplastic left heart syndrome.
        Congenit Heart Dis. 2016; 11: 727-732
        • Moler F.W.
        • Silverstein F.S.
        • Holubkov R.
        • Slomine B.S.
        • Christensen J.R.
        • Nadkarni V.M.
        • et al.
        Therapeutic hypothermia after out-of-hospital cardiac arrest in children.
        N Engl J Med. 2015; 372: 1898-1908
        • Slomine B.S.
        • Silverstein F.S.
        • Christensen J.R.
        • Holubkov R.
        • Page K.
        • Dean J.M.
        • et al.
        Neurobehavioral outcomes in children after out-of-hospital cardiac arrest.
        Pediatrics. 2016; (pii:e20153412): 137
        • Silverstein F.S.
        • Slomine B.S.
        • Christensen J.
        • Holubkov R.
        • Page K.
        • Dean J.M.
        • et al.
        Functional outcomes trajectories after out-of-hospital pediatric cardiac arrest.
        Crit Care Med. 2016; 44: e1165-e1174
        • Klassen A.
        • Raina P.
        • Reineking S.
        • Dix D.
        • Pritchard S.
        • O’Donnell M.
        Developing a literature base to understand the caregiving experience of parents of children with cancer: a systematic review of factors related to parental health and well-being.
        Support Care Cancer. 2007; 15: 807-818
        • Choi E.K.
        • Yoon S.J.
        • Kim J.H.
        • Park H.J.
        • Kim J.Y.
        • Yu E.S.
        Depression and distress in caregivers of children with brain tumors undergoing treatment: psychosocial factors as moderators.
        Psychooncology. 2016; 25: 544-550
        • Mu P.F.
        • Ma F.C.
        • Hwang B.
        • Chao Y.M.
        Families of children with cancer: the impact of anxiety experienced by fathers.
        Cancer Nurs. 2002; 25: 66-73
        • Svavarsdottir E.K.
        Surviving childhood cancer: parents’ perceptions of their child’s health.
        J Pediatr Oncol Nurs. 2005; 22: 80-88
        • Blair C.
        • Freeman C.
        • Cull A.
        The families of anorexia nervosa and cystic fibrosis patients.
        Psychol Med. 1995; 25: 985-993
        • Murphy N.A.
        • Christian B.
        • Caplin D.A.
        • Young P.C.
        The health of caregivers for children with disabilities: caregiver perspectives.
        Child Care Health Dev. 2007; 33: 180-187