Advertisement

Caregiver Strategy Use to Promote Children's Home Participation After Pediatric Critical Illness

      Abstract

      Objectives

      The primary objectives are to assess the most common type of caregiver strategy (remedial vs compensatory) reported for supporting their child’s home participation after critical illness and identify themes in compensatory strategies described, with a secondary objective to describe themes in strategy use as reported by caregivers of children who did and did not receive pediatric intensive care unit (PICU) rehabilitation services.

      Design

      Qualitative substudy of the Wee-Cover prospective cohort study.

      Setting

      Two PICU sites.

      Participants

      Wee-Cover enrolled caregivers (N=180) of children 1-17 years of age, who were admitted to a PICU for ≥48 hours. This study excluded participants missing relevant data (n=12).

      Intervention

      Not applicable.

      Main Outcome Measures

      Qualitative data were gathered from open-ended questions on strategies within the Participation and Environment Measure at PICU discharge and 3 and 6 months post-PICU discharge. Strategies were classified as remedial or compensatory pending their content fit with 1 of 5 environmental chapters in the International Classification of Functioning, Disability, and Health–Children and Youth Version. Data on PICU-based rehabilitation services were obtained prospectively from electronic medical records and dichotomized (yes or no).

      Results

      Most caregiver strategies were compensatory, with more than half (60%) of the strategies pertaining to fostering supportive relationships. In contrast, strategies addressing the child’s natural environment (12%), services (3%), and attitudes of others in the home (1%) were least commonly described. Similar themes were identified for caregivers whose children did and did not receive PICU rehabilitation services.

      Conclusions

      Caregivers identify a range of strategies to facilitate their child’s participation in home activities post-PICU discharge, but primarily report on strategies for addressing supports and relationships in the child’s home environment. Results highlight areas warranting caregiver education to support the child’s participation after critical illness.

      Keywords

      List of abbreviations:

      ICF-CY (International Classification of Functioning), Disability (and Health–Children and Youth Version), PEM (Participation and Environment Measure), PICU (pediatric intensive care unit)
      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'

      Subscribe:

      Subscribe to Archives of Physical Medicine and Rehabilitation
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect

      References

        • Pinto N.P.
        • Rhinesmith E.W.
        • Kim T.Y.
        • Ladner P.H.
        • Pollack M.M.
        Long-term function after pediatric critical illness: results from the Survivor Outcomes study.
        Pediatr Crit Care Med. 2017; 18: 122-130
        • Pollack M.M.
        • Holubkov R.
        • Funai T.
        • et al.
        Simultaneous prediction of new morbidity, mortality, and survival without new morbidity from pediatric intensive care: a new paradigm for outcomes assessment.
        Crit Care Med. 2015; 43: 1699-1709
        • Ong C.
        • Lee J.H.
        • Leow M.K.S.
        • Puthucheary Z.A.
        Functional outcomes and physical impairments in pediatric critical care survivors.
        Pediatr Crit Care Med. 2016; 17: 247-259
        • Khetani M.A.
        • Albrecht E.C.
        • Jarvis J.M.
        • Pogorzelski D.
        • Cheng E.
        • Choong K.
        Determinants of change in home participation among critically ill children.
        Dev Med Child Neurol. 2018; 60: 793-800
        • Di Marino E.
        • Tremblay S.
        • Khetani M.
        • Anaby D.
        The effect of child, family and environmental factors on the participation of young children with disabilities.
        Disabil Health J. 2018; 11: 36-42
        • Albrecht E.C.
        • Khetani M.A.
        Environmental impact on young children’s participation in home-based activities.
        Dev Med Child Neurol. 2017; 59: 388-394
        • Anaby D.
        • Law M.
        • Coster W.
        • et al.
        The mediating role of the environment in explaining participation of children and youth with and without disabilities across home, school, and community.
        Arch Phys Med Rehabil. 2014; 95: 908-917
        • Bedell G.M.
        • Cohn E.S.
        • Dumas H.M.
        Exploring parents’ use of strategies to promote social participation of school-age children with acquired brain injuries.
        Am J Occup Ther. 2005; 59: 273-284
        • Holsbeeke L.
        • Ketelaar M.
        • Schoemaker M.M.
        • Gorter J.W.
        Capacity, capability, and performance: different constructs or three of a kind ?.
        Arch Phys Med Rehabil. 2009; 90: 849-855
        • Pfeiffer B.
        • Coster W.
        • Snethen G.
        • Derstine M.
        • Piller A.
        • Tucker C.
        Caregivers’ perspectives on the sensory environment and participation in daily activities of children with autism spectrum disorder.
        Am J Occup Ther. 2017; 71: 1-9
        • Piškur B.
        • Beurskens A.J.
        • Jongmans M.J.
        • et al.
        Parents’ actions, challenges, and needs while enabling participation of children with a physical disability: a scoping review.
        BMC Pediatr. 2012; 12: 177
        • Jarvis J.M.
        • Choong K.
        • Khetani M.
        Associations of participation focused strategies and rehabilitation service use with caregiver stress after pediatric critical illness.
        Arch Phys Med Rehabil. 2019; 100: 703-710
        • Anaby D.
        • Mercerat C.
        • Tremblay S.
        Enhancing youth participation using the PREP intervention: parents’ perspectives.
        Int J Environ Res Public Health. 2017; 14: 1-10
        • Choong K.
        • Fraser D.
        • Al-Harbi S.
        • et al.
        Functional recovery in critically ill children, the “WeeCover” multicenter study.
        Pediatr Crit Care Med. 2018; 19: 145-154
        • Coster W.
        • Bedell G.
        • Law M.
        • et al.
        Psychometric evaluation of the Participation and Environment Measure for Children and Youth.
        Dev Med Child Neurol. 2011; 53: 1030-1037
        • Khetani M.A.
        • Graham J.E.
        • Davies P.L.
        • Law M.C.
        • Simeonsson R.J.
        Psychometric properties of the young children’s participation and environment measure.
        Arch Phys Med Rehabil. 2015; 96: 307-316
        • Law M.
        • Anaby D.
        • Teplicky R.
        • Khetani M.A.
        • Coster W.
        • Bedell G.
        Participation in the home environment among children and youth with and without disabilities.
        Br J Occup Ther. 2013; 76: 58-66
        • Haley S.M.
        • Coster W.J.
        • Dumas H.M.
        • et al.
        Accuracy and precision of the Pediatric Evaluation of Disability Inventory computer-adaptive tests (PEDI-CAT).
        Dev Med Child Neurol. 2011; 53: 1100-1106
        • Elo S.
        • Kääriäinen M.
        • Kanste O.
        • Pölkki T.
        • Utriainen K.
        • Kyngäs H.
        Qualitative content analysis: a focus on trustworthiness.
        SAGE Open. 2014; 4: 1-10
        • Benjamin T.E.
        • Lucas-Thompson R.G.
        • Little L.M.
        • Davies P.L.
        • Khetani M.A.
        Participation in early childhood educational environments for young children with and without developmental disabilities and delays: a mixed methods study.
        Phys Occup Ther Pediatr. 2017; 37: 87-107
        • Khetani M.A.
        • Cohn E.S.
        • Orsmond G.I.
        • Law M.C.
        • Coster W.J.
        Parent perspectives of participation in home and community activities when receiving Part C early intervention services.
        Topics Early Child Spec Educ. 2013; 32: 234-245
        • Bedell G.M.
        • Khetani M.A.
        • Cousins M.A.
        • Coster W.J.
        • Law M.C.
        Parent perspectives to inform development of measures of children’s participation and environment.
        Arch Phys Med Rehabil. 2011; 92: 765-773
        • Weisner T.S.
        Ecocultural understanding of children’s developmental pathways.
        Hum Dev. 2002; 45: 275-281
        • Piškur B.
        • Meuser S.
        • Jongmans M.J.
        • et al.
        The lived experience of parents enabling participation of their child with a physical disability at home, at school and in the community.
        Disabil Rehabil. 2016; 38: 803-812
        • Maul C.A.
        • Singer G.H.
        “Just good different things”: specific accommodations families make to positively adapt to their children with developmental disabilities.
        Topics Early Child Spec Educ. 2009; 29: 155-170
        • Khetani M.A.
        • Lim H.K.
        • Corden M.E.
        Caregiver input to optimize the design of a pediatric care planning guide for rehabilitation: descriptive study.
        JMIR Rehabil Assist Technol. 2017; 4: e13
        • Jarvis J.M.
        • Gurga A.
        • Lim H.
        • et al.
        Usability of PEM+ for client-centered and participation focused care planning.
        Am J Occup Ther. 2019; 73: e1-e8
        • Edwards J.
        • Houtrow A.
        • Vasilevskis E.
        • et al.
        Chronic conditions among children admitted to U.S. pediatric intensive care units: their prevalence and impact on risk for mortality and prolonged length of stay.
        Crit Care Med. 2012; 40: 2196-2203