Successful and safe delivery of anesthesia and perioperative care for children with complex special health care needs

Graham, Robert J.; Wachendorf, Maria T.; Burns, Jeffery P; Mancuso, Thomas J.

doi:10.1016/j.jclinane.2008.06.033

Cited by 20 publications

(16 citation statements)

References 58 publications

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“…Of these, six studies related to specifically to cardiac surgery outcomes, 20–25 and two considered anaesthetics and/or pain management after surgery. 26 27 The remaining two studies looked at surgical intervention for Hirschsprung’s disease, comparing outcomes in children with and without DS. 28 29 …”

Section: Resultsmentioning

confidence: 99%

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Patient safety vulnerabilities for children with intellectual disability in hospital: a systematic review and narrative synthesis

Mimmo

Harrison

Hinchcliff

2018

bmjpo

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PurposeAdults and children with intellectual disability (ID) are vulnerable to preventable morbidity and mortality due to poor quality healthcare. While poor quality care has been commonly identified among children with ID, evidence of the patient safety outcomes for this group is lacking and therefore explored in this review.Data sourcesSystematic searches of six electronic bibliographic research databases were undertaken from January 2000 to October 2017, in addition to hand searching.Study selectionKeywords, subject headings and MeSH terms relating to the experience of iatrogenic harm during hospitalisation for children with ID were used. Potentially relevant articles were screened against the eligibility criteria. Non-English language papers were excluded.Data extractionData regarding: author(s), publication year, country, sample, health service setting, study design, primary focus and main findings related to measures of quality and safety performance were extracted.Results of data synthesisSixteen studies met the inclusion criteria, with three themes emerging: the impact of the assumptions of healthcare workers (HCWs) about the child with ID on care quality and associated safety outcomes; reliance on parental presence during hospitalisation as a protective factor; and the need for HCWs to possess comprehensive understanding of the IDs experienced by children in their care, to scientifically deduce how hospitalisation may compromise their safety, care quality and treatment outcomes.ConclusionWhen HCWs understand and are responsive to children’s individual needs and their ID, they are better placed to adjust care delivery processes to improve care quality and safety during hospitalisation for children with ID.

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Section: Resultsmentioning

confidence: 99%

“…One of these described the post general anaesthetic experience for children with complex special healthcare needs, referencing developmental disorders and DS in the abstract as a factor of interest. 26 The final paper investigated the assessment and management of pain in children with and without ID after spinal surgery. 30 …”

Section: Resultsmentioning

confidence: 99%

Patient safety vulnerabilities for children with intellectual disability in hospital: a systematic review and narrative synthesis

Mimmo

Harrison

Hinchcliff

2018

bmjpo

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“…The authors previously described effective provision of anesthesia for children with a range of special health care needs (SHCN) (3). However, there is no standard approach to general anesthetic or procedural sedation for children with SMA.…”

Section: Introductionmentioning

confidence: 99%

Anesthesia and perioperative medical management of children with spinal muscular atrophy

Graham¹,

Athiraman²,

Laubach

et al. 2009

Pediatric Anesthesia

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125

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Perioperative care can be provided for children with SMA safely and effectively with total intravenous or inhaled anesthetics along with the judicious use of opioids to improve patient comfort without increased morbidity. Further prospective studies of standardized anesthetic and perioperative respiratory medical management in this population are required to minimize the decompensation of tenuous preoperative respiratory function.

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“…Spinal fusion is extensive surgery and should be conducted within a multidisciplinary paediatric setting following preoperative planning and with specialist paediatric pain management teams. (Gibson 2004, Graham et al 2009, Playfor et al 2006) Families in Australia with a daughter with Rett syndrome have reported high satisfaction with hospital processes particularly those in intensive care settings. (Downs et al 2014)…”

Section: Discussionmentioning

confidence: 99%

“…following preoperative planning and with specialist paediatric pain management teams (Gibson 2004;Playfor et al 2006;Graham et al 2009). Families in Australia with a daughter with RTT have reported high satisfaction with hospital processes particularly those in intensive care settings (Downs et al 2014).…”

Section: Certainty In Their Decisionmentioning

confidence: 99%

Spinal fusion in girls with Rett syndrome: post‐operative recovery and family experiences

Marr

Leonard

Torode

et al. 2015

Child

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Background Rett syndrome is a severe neurodevelopmental disorder mainly affecting females and scoliosis is a common comorbidity. Spinal fusion may be recommended if the scoliosis is progressive. This qualitative study investigated recovery of girls with Rett syndrome during the first 12 postoperative months and explored family perspectives and coping around the time of surgery. Method Parents registered with the population-based Australian Rett Syndrome Database were recruited to this study if their daughter had a confirmed pathogenic MECP2 mutation and spinal fusion between 2006 and 2012. Twenty-five interviews were conducted to determine their daughter’s recovery and parental stresses and coping. Themes in the interview data were identified with content analysis and the regaining of gross motor skills over the first 12 postoperative months were described with time-to-event (survival) analysis. Results Pain and energy levels, appetite, mood and coinciding health issues influenced their daughter’s postoperative recovery. The majority of girls recovered preoperative sitting (88%), standing (81%) and walking (80%) by 12 months. The decision to proceed with surgery was associated with feelings of fear, obligation, relief and guilt for families. Development of complications, poor support and feelings of isolation increased their emotional burden whilst adequate information and discharge preparation, confidence in self and staff, and balancing personal needs with their daughter’s care relieved this burden. Interpretation Our study identified clinical practice issues in relation to families whose daughter with Rett syndrome undergoes spinal fusion, issues that are also relevant to other severe disabilities. Return of wellness and gross motor skills following spinal fusion in girls with Rett syndrome occurred within the first 12 postoperative months in most cases. Parents require information and practical support to alleviate their emotional burden.

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Successful and safe delivery of anesthesia and perioperative care for children with complex special health care needs

Cited by 20 publications

References 58 publications

Patient safety vulnerabilities for children with intellectual disability in hospital: a systematic review and narrative synthesis

Patient safety vulnerabilities for children with intellectual disability in hospital: a systematic review and narrative synthesis

Anesthesia and perioperative medical management of children with spinal muscular atrophy

Spinal fusion in girls with Rett syndrome: post‐operative recovery and family experiences

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