Measuring and improving the quality of NHS care for children and young people

Hargreaves, Dougal; Lemer, Claire; Ewing, Carol; Cornish, Jacqueline; Baker, Edward N.; Toma, Keiko; Saxena, Sonia; McCulloch, Bernadette; McFarlane, Lesley; Welch, Jack; Sparrow, Emma; Kossarova, Lucia; Lumsden, Daniel E.; Cheung, C Ronny

doi:10.1136/archdischild-2017-314564

Cited by 7 publications

(3 citation statements)

References 13 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Healthcare transition is complex [34, 35] and any efforts to support this process should consider the needs and experiences of young people across the healthcare system and during the post-transfer period [2, 36, 37]. Listening to children’s and young people’s voices - and acting on what they say - will help us develop better, more young-people-friendly services [2] and adolescent-responsive health systems [36], as well as improving quality of care [38].…”

Section: Introductionmentioning

confidence: 99%

Not being heard: barriers to high quality unplanned hospital care during young people’s transition to adult services – evidence from ‘this sickle cell life’ research

Renedo

Miles

Chakravorty

et al. 2019

BMC Health Serv Res

View full text Add to dashboard Cite

BackgroundYoung people’s experiences of healthcare as they move into adult services can have a major impact on their health, and the transition period for young people with sickle cell disease (SCD) needs improvement. In this study, we explore how young people with SCD experience healthcare during this period of transition.MethodsWe conducted a co-produced longitudinal qualitative study, including 80 interviews in 2016–2017 with young people with SCD aged 13–21 (mean age 16.6) across two cities in England. We recruited 48 participants (30 female, 18 male): 27 interviews were one-off, and 53 were repeated 2–3 times over approximately 18 months. We used an inductive analytical approach, combining elements of Grounded Theory and thematic analysis.ResultsParticipants reported significant problems with the care they received in A&E during painful episodes, and in hospital wards as inpatients during unplanned healthcare. They experienced delays in being given pain relief and their basic care needs were not always met. Participants said that non-specialist healthcare staff did not seem to know enough about SCD and when they tried to work with staff to improve care, staff often seemed not prepared to listen to them or act on what they said. Participants said they felt out of place in adult wards and uncomfortable with the differences in adult compared with paediatric wards. Because of their experiences, they tried to avoid being admitted to hospital, attempting to manage their painful episodes at home and accessing unplanned hospital care only as a last resort. By contrast, they did not report having problems within SCD specialist services during planned, routine care.ConclusionsOur study underscores the need for improvements to make services youth-friendly and youth-responsive, including training staff in SCD-specific care, compassionate care and communication skills that will help them elicit and act on young people’s voices to ensure they are involved in shaping their own healthcare. If young people are prevented from using transition skills (self-management, self-advocacy), or treated by staff who they worry do not have enough medical competency in their condition, they may well lose their trust in services, potentially compromising their own health.

show abstract

Section: Introductionmentioning

confidence: 99%

Not being heard: barriers to high quality unplanned hospital care during young people’s transition to adult services – evidence from ‘this sickle cell life’ research

Renedo

Miles

Chakravorty

et al. 2019

BMC Health Serv Res

View full text Add to dashboard Cite

show abstract

“…Second, the lower quality and visibility of data relating to CYP MH compared with care for adults may have influenced spending decisions 21. Historically, there has been more systematic and thorough recording and measurement of processes relating to acute health conditions such as A&E waiting times and hospital length of stay.…”

Section: Discussionmentioning

confidence: 99%

Variation in spend on young mental health across Clinical Commissioning Groups in England: a cross-sectional observational study

2019

View full text Add to dashboard Cite

ObjectivesTo investigate whether the rate of spend on child and adolescent mental health is influenced by demand for other competing services in local commissioning decisions.DesignAnalysis of spend data by Clinical Commissioning Groups (CCG), including other publicly available data to control for variation in need.SettingLocal commissioning decisions in the National Health Service.ParticipantsCommissioning of health services across 209 CCGs.Main outcome measuresAssociation between the rate of child and adolescent mental health spend and demand for child and adolescent mental health services (CAMHS), adult mental health services and physical health services after adjusting for confounding factors.ResultsAn additional percentage point in the proportion of children in care is associated with 4% higher child and young person mental health (CYP MH) spend per person aged 0–18 (ratio of means: 1.04; 95% CI 1.00 to 1.07). Spending £100 more on physical health services was associated with 9% lower spend in CYP MH per person aged 0–18 (ratio of means: 0.91; 95% CI 0.84 to 0.99).ConclusionsHealthcare commissioners in England face a challenge in balancing competing needs. This paper contributes to our understanding of this by quantifying the possible extent of the trade-off between physical health and CYP MH when allocating budgets. Any attempt to explain the variation in CAMHS spend must also take account of demand for other services.

show abstract

“…It is recognized globally that, relative to adult patients, attempts to collect CYP's experiences and views on healthcare provision is very limited [107][108][109][110]. This is a critical gap given parent-proxy reporting does not accurately reflect the experiences of CYP, with parents tending to rate experiences more positively than their child [111][112][113].…”

Section: Figures In Brackets Indicate the Number Of Papers Reporting ...mentioning

confidence: 99%

Hospital healthcare experiences of children and young people with life-threatening or life-shortening conditions, and their parents: scoping reviews and resultant conceptual frameworks

2023

View full text Add to dashboard Cite

Background Patient experience is a core component of healthcare quality. Patient-reported experience measures (PREMs) are increasingly used to assess this, but there are few paediatric PREMs. This paper reports the first stage of developing two such measures, one for children and young people (0–18 years) (CYP) with a life-threatening or life-shortening condition (LT/LSC), and one for their parents. It comprised parallel scoping reviews of qualitative evidence on the elements of health service delivery and care that matter to, or impact on, CYP (Review 1) and parents (Review 2). Methods Medline and PsychINFO (1/1/2010 – 11/8/2020) and CINAHL Complete (1/1/2010 – 4/7/2020) were searched and records identified screened against inclusion criteria. A thematic approach was used to manage and analyse relevant data, informed by existing understandings of patient/family experiences as comprising aspects of staff’s attributes, their actions and behaviours, and organisational features. The objective was to identity the data discrete elements of health service delivery and care which matter to, or impact on, CYP or parents which, when organised under higher order conceptual domains, created separate conceptual frameworks. Results 18,531 records were identified. Sparsity of data on community-based services meant the reviews focused only on hospital-based (inpatient and outpatient) experiences. 53 studies were included in Review 1 and 64 in Review 2. For Review 1 (CYP), 36 discrete elements of healthcare experience were identified and organized under 8 higher order domains (e.g. staff’s empathetic qualities; information-sharing/decision making; resources for socializing/play). In Review 2 (parents), 55 elements were identified and organized under 9 higher order domains. Some domains were similar to those identified in Review 1 (e.g. professionalism; information-sharing/decision-making), others were unique (e.g. supporting parenting; access to additional support). Conclusions Multiple and wide-ranging aspects of the way hospital healthcare is organized and delivered matters to and impacts on CYP with LT/LSCs, and their parents. The aspects that matter differ between CYP and parents, highlighting the importance of measuring and understanding CYP and parent experience seperately. These findings are key to the development of patient/parent experience measures for this patient population and the resultant conceptual frameworks have potential application in service development.

show abstract

Measuring and improving the quality of NHS care for children and young people

Cited by 7 publications

References 13 publications

Not being heard: barriers to high quality unplanned hospital care during young people’s transition to adult services – evidence from ‘this sickle cell life’ research

Not being heard: barriers to high quality unplanned hospital care during young people’s transition to adult services – evidence from ‘this sickle cell life’ research

Variation in spend on young mental health across Clinical Commissioning Groups in England: a cross-sectional observational study

Hospital healthcare experiences of children and young people with life-threatening or life-shortening conditions, and their parents: scoping reviews and resultant conceptual frameworks

Contact Info

Product

Resources

About