The accessibility of general NHS services for children with disabilities

Wharton, Sarah; Hames, Annette; Milner, Helen V.

doi:10.1111/j.1365-2214.2005.00497.x

Cited by 13 publications

(17 citation statements)

References 5 publications

(9 reference statements)

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“…A lack of understanding and knowledge by health care providers about ASD is also described as a factor that interferes with patient access to appropriate services . Caregivers and staff participants in our study mentioned this lack of understanding and training.…”

Section: Discussionmentioning

confidence: 99%

The experiences of children with autism spectrum disorder, their caregivers and health care providers during day procedure: A mixed methods study

Taghizadeh

Heard

Davidson

et al. 2019

Pediatric Anesthesia

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Background Autism Spectrum Disorder is now diagnosed in more than 1% of children in Australia and USA. Children with autism spectrum disorder may have additional health care needs, require more specialized services for their health care, or experience more difficulties during hospital attendance. Customized care for these children may assist in decreasing potentially challenging behaviours during hospitalization. The purpose of this study was to explore the experiences of children with autism spectrum disorder and their caregivers during attendance for day procedures in two hospitals in Melbourne, Australia. Further, the perceptions of their health care providers were explored. Methods Twenty‐nine participants, including 14 health care providers and 15 caregivers of children with autism spectrum disorder, were interviewed within 72 hours of their day procedure attendance at the Royal Children's Hospital and the Royal Dental Hospital in Melbourne, Australia. Interviews were recorded digitally, then transcribed and coded. Mixed quantitative and qualitative methods (content analysis) were used. Results Hospital attendance was often stressful. Participants identified a number of facilitating factors including good communication, clear explanations, and friendly attitudes of staff. Flexibility and individualized care of patients (such as avoiding unnecessary blood pressure measurements, and not changing into hospital gowns) were valued. Supportive aids (such as computers or special interest objects), use of social stories, and giving premedication were all considered helpful. Perceived barriers to care included prolonged waiting times for operation date as well as waiting on the day of operation, lack of private space, lack of noninvasive equipment such as cutaneous infrared thermometers, poor communication, and inadequate training of staff about autism spectrum disorder. Conclusion Providing optimal care for children with autism spectrum disorder requires a multifaceted approach that may require changes to hospital work flow, staff training, better use of aids (such as tablet computers and social stories), and premedication. Good communication and flexibility are key areas of importance.

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Section: Discussionmentioning

confidence: 99%

The experiences of children with autism spectrum disorder, their caregivers and health care providers during day procedure: A mixed methods study

Taghizadeh

Heard

Davidson

et al. 2019

Pediatric Anesthesia

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show abstract

“…Although nursing staff and families generally felt prepared for a child’s admission, there where times when neither party was sufficiently organised. Wharton et al. (2005) found that the lack of preparation to support disabled children in hospital can have a negative impact on the quality of the care received.…”

Section: Discussionmentioning

confidence: 99%

“…Research that has taken place indicates that children with learning disabililties and their families they are continuing to have difficulties accessing mainstream healthcare settings. For instance, Wharton et al. (2005) interviewed 25 parents of children with disabilities and identified eight factors that interfered with access to services, outlined below.…”

Section: Introductionmentioning

confidence: 99%

The experiences of children with learning disablilities, their carers and staff during a hospital admission

Brown¹,

Guvenir²

2009

Brit J Learn Disabil

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Accessible summary• Disabled children and their carers were asked what it was like to stay in hospital. • They said they felt worried and the hospital was not always ready for them.• They also said it was helpful if the child's carer could be there during a hospital stay and it is better when the child has their own room. • This research will help hospital make changes to make staying in hospital as positive as possible. SummaryGovernment policy is that people with learning disabilities should have their healthcare needs met by mainstream services. This study interviewed the carers of 13 children with learning disabilities admitted to hospital for a period longer than 24 h. Nursing staff and two children were also interviewed. Five themes were identified as having a significant impact: (i) child, carer and staff anxiety, (ii) preparedness for the admission, (iii) difficulties managing the child's behaviour, (iv) carer presence during the admission and (v) ward environment. This study presents edited responses from children, their carers and ward staff and identifies areas for service improvement. These include an emphasis on the value of emotional support, ensuring staff are prepared for hospital admission, agreeing strategies for supporting the child's behaviour, clarifying carers and staff roles during an admission, ensuring the child has an individual room if required. Study limitations are discussed and directions for future research recommended.

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“…Although testing for Hepatitis B is a relatively straightforward healthcare procedure, it took more than 15 weeks and seven appointments for a blood sample to be taken from Yusuf. The experience of Yusuf and his carers demonstrates a number of issues that have previously been identified for learning disabled people accessing healthcare services (Jackson Brown & Guvenir 2009;Wharton et al 2004).…”

Section: The Key Issuesmentioning

confidence: 99%

“…Qualitative research has identified some of the challenges faced by learning disabled children when accessing healthcare services (e.g. Wharton et al 2004). Jackson Brown & Guvenir (2009) conducted interviews with children with learning disabilities, their parents and also staff at the hospital they attended.…”

Section: Introductionmentioning

confidence: 99%

Access to mainstream health services: a case study of the difficulties faced by a child with learning disabilities

Brown

Cooper

Diebel

2012

Brit J Learn Disabil

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Accessible summary• People with learning disabilities need to visit the doctor like everyone else, but this is sometimes difficult. • This paper is about a boy who needed to have a blood test.• It took seven appointments and 15 weeks to take a blood sample.• This paper talks about ways that medical services could get better and change to help people with learning disabilities visit the doctor. SummaryPeople with learning disabilities have higher levels of health needs compared with the general population (Nocon, 2006, Background evidence for the DRC's formal investigation into health inequalities experienced by people with learning disabilities or mental health problems. London and Manchester, Disability Rights Commission). Research has shown that these individuals receive less effective health care (Michael, 2008, Tizard Learn Disabil Rev, 13: 28) and has explored the challenges and barriers in accessing health services (Jackson Brown & Guvenir, 2009, Br J Learn Disabil, 37: 110). This case study describes the experience of a child with a severe learning disability and his family accessing mainstream health care for a simple medical procedure. Implications for how healthcare services can be organised to meet the needs of learning disabled people are discussed, addressing issues such as physical environment of surgeries and hospitals, communication between staff teams, staff skills and lack of preparedness.

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The accessibility of general NHS services for children with disabilities

Cited by 13 publications

References 5 publications

The experiences of children with autism spectrum disorder, their caregivers and health care providers during day procedure: A mixed methods study

The experiences of children with autism spectrum disorder, their caregivers and health care providers during day procedure: A mixed methods study

The experiences of children with learning disablilities, their carers and staff during a hospital admission

Access to mainstream health services: a case study of the difficulties faced by a child with learning disabilities

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