Access to primary care for children and young people (CYP) in the UK: a scoping review of CYPs, caregivers and healthcare professionals views and experiences of facilitators and barriers

Summary

The review identified high-quality evidence, from multiple studies and informants, that CYP access to primary care was affected by caregivers and YP knowing whether symptoms/conditions could be managed at home or whether healthcare expertise was needed, supporting other studies that show patients must identify themselves as a suitable candidate for healthcare services in order to seek access.75 76 The NICE review of access also highlighted the importance of CYP having information about the healthcare services available to them.19 Levels of patients’ health and language literacy, access to legitimate health advice via social networks or culturally appropriate resources, and patients’ expectations affect equitable and appropriate use of primary care.11 77 78 This suggests multilingual public health information about childhood symptoms/conditions when and how to seek help should be available online and in public spaces, and professionals who bridge community and primary care services (eg, third sector health workers, health visitors, school nurses, family hub workers) should support caregivers/YP into primary care when they identify healthcare needs and there are known language, cultural or trust-related barriers to accessing services.19 79–81

Many high-quality studies suggested that CYP access to services could be improved by making them easier to reach and enter, for example, by extending opening hours and colocated services. Signals that healthcare settings were family-friendly, such as having posters/information designed for CYP in reception, appropriate to the needs of different age groups, and having welcoming and friendly reception staff were quick-wins. Flexibility, for example, having the option to call, drop-in, or use an online system to make an appointment, could facilitate access for caregivers with different needs and preferences in time, communication and support.82 Wealthier caregivers were able to circumvent blocks to timely secondary care by accessing private healthcare, but this was not possible for all caregivers, suggesting that waiting lists are likely to disadvantage poorer CYP. This is particularly concerning in dentistry where 27 000 children were on NHS waiting lists for specialist dental care, assessment or procedures in January 2023.83 Combined with general practice workforce shortages,14 increased CYP morbidities15 and lower caregiver self-efficacy, health and language literacy in deprived areas, the importance of proactive efforts to address inequalities is evident.82

Although improving CYP access to mental healthcare is a high policy priority,8 29 there was strong evidence that YP were reluctant to consult with GPs about mental health concerns without a pre-existing relationship with them. Feelings of fear or embarrassment, experiences of discrimination and/or negative interactions with HCPs, for example, feeling dismissed or unheard, increased CYP’s and caregivers’ reticence to disclose concerns, a finding mirrored in the NICE review.19 Prioritising continuity of care for YP to enable trust to develop in a context where GPs are increasingly working part-time and locuming needs consideration.84–86 Caregivers, YP and HCPs also reported gaps in GPs knowledge/competence in managing CYP mental health, and long-wait times and rejected referrals to secondary care, indicating a need to increase medical training in child and adolescent mental health.87 88 Although school-based interventions may alleviate concerns for some children, evidence from large-scale mixed-method evaluations suggests that CYP with moderately high emotional needs and those with additional needs (eg, neurodiversity, SEND or difficult family circumstances) may fall through the gaps.89 90 There are examples of integrated approaches for children with chronic health conditions whereby GPs are supported by specialists which could bridge this gap including in mental health.91 92 The new role of the primary care CYP mental health practitioner and social prescribing link workers may be able to support CYP waiting for CAMHS, though the evidence for this is not yet known.93 94

The review highlighted aspects of primary healthcare experiences that were well evidenced, with multiple studies of high or medium quality across different informants’ views. These were experiences of stigma, discrimination and embarrassment as access barriers; access affected by the supply of services; knowledge, confidence and information facilitating CYP’s/caregivers’ access; and HCPs needing to enable CYP/caregivers to disclose their concerns. However, we also identified several evidence gaps where more research was needed (1) CYP’s perspectives on creating family-friendly healthcare settings; (2) CYP’s views on the impact of delayed or rejected referrals; (3) high-quality studies on managing confidentiality and parental involvement, including caregivers’ perspectives and (4) high-quality studies on experiences of access to oral healthcare and optometry.

Strengths and limitations

Our review was rigorously conducted and included quality appraisal. Mapping patterns of facilitators/barriers across different subpopulations with higher health needs revealed that access was affected by caregivers’ needing to be able to confidently advocate for their child’s needs. It also highlighted the multilayered barriers that exist for some groups, including ethnic minority CYP, and the lack of current evidence on access for looked-after children. It extends the findings of the NICE review by highlighting how local healthcare knowledge within communities and social networks affects CYP’s and caregivers’ decision to seek help, the impact of delays or rejected referrals to secondary care, and areas where HCPs may lack knowledge and competence.

Regarding limitations, we only double-screened 20% of titles/abstracts and we may have missed reports due to the array of terms for primary care, for example, we did not include search terms specific to health visiting, walk-in centres or sexual health clinics. Our definition of access included being able to use healthcare services and have healthcare needs met. Consequently, we viewed communication problems in consultations as part of the negotiation of access and not being referred to secondary care when CYP/caregivers perceived it necessary as a failure to have healthcare needs met. Although including terms specific to patient–doctor communication and referral decision-making would have increased the sensitivity of the review, it would have reduced its specificity and increased the resources needed for screening beyond those that were available. Note, the recommendations on communicating with CYP can be found in the NICE guidelines.19 We could not screen studies in systematic reviews or search for grey literature due to time and resources constraints, and we may have missed relevant reports, particularly for marginalised groups (eg, lesbian, gay, bisexual, transgender, queer, questioning and ace YP, migrant YP). The impact of workforce barriers to access, for example, recruiting and retaining GPs, were not identified using our search terms and may require specific terms to be added to future reviews.

This post was originally published on https://bmjopen.bmj.com