Responding to safe care: Healthcare staff experiences caring for a child with intellectual disability in hospital. Implications for practice and training

Ong, Natalie; Long, Janet C.; Weise, Janelle; Walton, Merrilyn

doi:10.1111/jar.12978

Cited by 7 publications

(16 citation statements)

References 56 publications

(171 reference statements)

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“…This needs to be examined further in terms of examining prevailing attitudes of staff towards parents and children with intellectual disability. 39 …”

Section: Discussionmentioning

confidence: 99%

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Reported clinical incidents of children with intellectual disability: A qualitative analysis

Ong

Mimmo

Barnett

et al. 2022

Develop Med Child Neuro

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Aim To qualitatively explore reported clinical incidents of children with intellectual disability aged 0 to 18 years. Method A secondary qualitative evaluation using latent content analysis was used on retrospective hospital incident management reporting data (1st January–31st December 2017) on 1367 admissions for 1018 randomly selected patients admitted to two tertiary children's hospitals in New South Wales, Australia. Sex and age at admission in children with and without intellectual disability: 83 (43.7%) versus 507 (43.1%) females and 107 (56.3%) versus 670 (56.9%) males, p=0.875; median age 3 years (0–18y) versus 4 years (0–18y), p=0.122. Of these, 44 patient safety incident reports for children with intellectual disability (sex, SD, and range) and 167 incident reports for children without intellectual disability (sex, SD, and range) were found and analysed. Results Ten themes were synthesized from the data and represented the groups with and without intellectual disability. Children with intellectual disability had a significantly higher proportion of care issues identified by their parents. They also had higher rates of multiple reported clinical incidents per admission compared to children without intellectual disability. Interpretation Mechanisms to advocate and raise patient safety issues for children with intellectual disability are needed. Partnerships with parents and training of staff in reporting clinical incidents for this population would enhance the embedding of reasonable adaptations into incident management systems for ongoing monitoring and improvement. What this paper adds Children with intellectual disability experienced multiple patient safety incidents per admission compared to children without intellectual disability. Children with intellectual disability had significantly increased rates of parent‐identified incidents. Issues with medication, communication, delays in diagnosis and treatment, and identification of deterioration were noted.

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“…This needs to be examined further in terms of examining prevailing attitudes of staff towards parents and children with intellectual disability. 39 …”

Section: Discussionmentioning

confidence: 99%

“…These attributions seem to neglect the need to look at broader system or protective factors that may have been absent, and may have played a role in not preventing the incident from occurring. This needs to be examined further in terms of examining prevailing attitudes of staff towards parents and children with intellectual disability 39 …”

Section: Discussionmentioning

confidence: 99%

Reported clinical incidents of children with intellectual disability: A qualitative analysis

Ong

Mimmo

Barnett

et al. 2022

Develop Med Child Neuro

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“…A lack of skills and training has been identified as a key challenge (Altman et al, 2018; Freed et al, 2009; Lennox et al, 1997), as well as limitations on a GPs time and capacity to support families (Altman et al, 2018). Within a hospital context, healthcare providers have reported anxiety around treatment and decision making for children with intellectual disabilities (Ong et al, 2022). Healthcare providers are cognisant of the challenges for families faced with negotiating complex systems, which are exacerbated by increased medical complexity and psychosocial issues (Altman et al, 2018).…”

Section: Introductionmentioning

confidence: 99%

Factors that affect GP referral of a child with intellectual disability for a mild illness: A discrete choice experiment

Nicholson,

McDonnell,

Conlon

et al. 2023

Research Intellect Disabil

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BackgroundGeneral practitioners (GP) report multiple challenges when treating individuals with intellectual disabilities which may influence referral rates. The study aimed to establish factors that influence GP's decision‐making when referring a child with intellectual disabilities to the emergency department.MethodDiscrete choice experiments (DCEs) are increasingly used in health research to further understand complex decision making. A DCE was designed to assess the relative importance of factors that may influence a GP's (N = 157) decision to refer.ResultsA random parameters model indicated that perceived limited parental capacity to manage an illness was the most important factor in the decision to refer a child to the ED, followed by a repeat visit, a referral request from the parent, and a Friday afternoon appointment.ConclusionUnderstanding the factors that influence referral is important for service improvement and to strengthen primary care provision for this population and their families.

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“…[5][6][7][8] There is growing evidence that health care staff themselves contribute to poor quality of care and adverse events. [9][10][11] Clinician factors associated with unsafe care include poor communication and a lack of staff-parent interactions and partnerships. 10 This is thought to stem from poor staff attitudes and biases towards parents and children with an intellectual disability.…”

Section: Introductionmentioning

confidence: 99%

“…[9][10][11] Clinician factors associated with unsafe care include poor communication and a lack of staff-parent interactions and partnerships. 10 This is thought to stem from poor staff attitudes and biases towards parents and children with an intellectual disability. 12 Parents often feel unheard, dismissed or excluded from decision making about their child.…”

Section: Introductionmentioning

confidence: 99%

What do parents think about the quality and safety of care provided by hospitals to children and young people with an intellectual disability? A qualitative study using thematic analysis

Ong,

Lucien,

Long

et al. 2023

Health Expectations

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ObjectivesChildren with intellectual disability experience patient safety issues resulting in poor care experiences and health outcomes. This study sought to identify patient safety issues that pertain to children aged 0–16 years with intellectual disability admitted to two tertiary state‐wide children's hospitals and a children's palliative care centre; to describe and understand these factors to modify the Australian Patient Safety Education Framework to meet the particular needs for children and young people with intellectual disability.Design, Setting and ParticipantsParents of children with intellectual disability from two paediatric hospitals and a palliative care unit participated in semi‐structured interviews to elicit their experiences of their child's care in the context of patient safety. Thirteen interviews were conducted with parents from various backgrounds with children with intellectual, developmental and medical diagnoses.ResultsEight themes about safety in hospital care for children and young people with intellectual disability emerged from thematic analyses: Safety is not only being safe but feeling safe; Negative dismissive attitudes compromise safety, quality and care experience; Parental roles as safety advocates involve being heard, included and empowered; Need for purposeful and planned communication and care coordination to build trust and improve care; Systems, processes and environments require adjustments to prevent patient safety events; Inequity in care due to lack of resources and skills, Need for training in disability‐specific safety and quality issues and Core staff attributes: Kindness, Patience, Flexibility and Responsiveness. Parents highlighted the dilemma of being dismissed when raising concerns with staff and being required to provide care with little support. Parents also reported a lack of comprehensive care coordination services. They noted limitations within the healthcare system in accommodating reasonable adjustments for a family and child‐centred context.ConclusionsThe development of an adapted Patient Safety Education Framework for children with intellectual disability should consider ways for staff to transform attitudes and reduce bias which leads to adaptations for safer and better care. In addition, issues that apply to quality and safety for these children can be generalised to all children in the hospital.Patient and Public ContributionParent advocates in the project advisory team were shown the questions to determine their appropriateness for the interviews.

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Responding to safe care: Healthcare staff experiences caring for a child with intellectual disability in hospital. Implications for practice and training

Cited by 7 publications

References 56 publications

Reported clinical incidents of children with intellectual disability: A qualitative analysis

Reported clinical incidents of children with intellectual disability: A qualitative analysis

Factors that affect GP referral of a child with intellectual disability for a mild illness: A discrete choice experiment

What do parents think about the quality and safety of care provided by hospitals to children and young people with an intellectual disability? A qualitative study using thematic analysis

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