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Continuity of care
Evidence review P
NICE Guideline, No. 204
National Guideline Alliance (UK).
Continuity of care
Review question
What factors promote, or present barriers to, continuity of care for babies, children and young people?
Introduction
Delivering continuity of care means providing healthcare that is as seamless as possible. It helps babies, children and young people receive care that is focused around their clinical needs, preferences and ideally that allows them to build a therapeutic relationship with their healthcare professionals This, in turn, can improve their overall healthcare experience. Continuity of care is important for all babies, children and young people but may be particularly important for those with ongoing medical conditions or complex needs, who may receive healthcare in a variety of settings and from a number of different healthcare professionals.
The aim of this review is to identify barriers which may hamper continuity, and identify the best ways to promote continuity of care.
Summary of the protocol
See Table 1 for a summary of the population, phenomenon of interest and primary outcome characteristics of this review.
Table 1
Summary of the protocol.
For further details see the review protocol in appendix A.
Methods and process
This evidence review was developed using the methods and process described in developing NICE guidelines: the manual. Methods for this review question are described in the review protocol in appendix A and the methods supplement.
Clinical evidence
Included studies
This was a qualitative review with the aim of:
- Understanding how babies, children and young people prefer services to provide continuity and coordination of their healthcare.
A systematic review of the literature was conducted using a combined search. Eleven studies were included for this review: 4 studies used semi-structured interviews (Diwakar 2019, Harper 2014, Law 2020, Price 2011); 3 used participatory-based approaches combined with either semi-structured interviews (O’Reilly 2013, Whale 2017) or family case studies (Sime 2014); 1 used focus groups and semi-structured interviews (Waite-Jones 2018 ); 1 mixed-methods study included questionnaire and semi-structured interviews (Davison 2017) and 2 systematic reviews which included qualitative, quantitative and mixed-methods studies were included (Diffin 2019 and Robards 2018). With the exception of Diffin 2019 and Robards 2018, which included studies from the US, Australia, Canada, New Zealand, Italy and Portugal, the remaining 10 studies were conducted in the UK.
The included studies are summarised in Table 2.
The data from the included studies were synthesised and explored in a number of central themes and sub-themes (as shown in Figure 1). Main themes are shown in dark blue and sub-themes in pale blue.
Figure 1
Theme map.
See the literature search strategy in appendix B and study selection flow chart in appendix C.
Excluded studies
Studies not included in this review are listed, and reasons for their exclusion are provided in appendix K.
Summary of studies included in the evidence review
Summaries of the studies that were included in this review are presented in Table 2.
Table 2
Summary of included studies.
See the full evidence tables in appendix D. No meta-analysis was conducted (and so there are no forest plots in appendix E).
Quality assessment of studies included in the evidence review
A summary of the strength of evidence (overall confidence), assessed using GRADE-CERQual is presented according to the themes below. For each of the sub-themes, the overall confidence was judged to be:
Main theme 1: Individuals
- Sub-theme 1.1: Knowledge of healthcare system. The overall confidence in this sub-theme was judged to be high.
- Sub-theme 1.2: Support. The overall confidence in this sub-theme was judged to be high.
- Sub-theme 1.3: Personal lives. The overall confidence in this sub-theme was judged to be moderate.
- Sub-theme 1.4: Results. The overall confidence in this sub-theme was judged to be very low.
Main theme 2: Healthcare professionals
- Sub-theme 2.1: Inter-service communication. The overall confidence in this sub-theme was judged to be moderate.
- Sub-theme 2.2: Collaboration with babies, children and young people. The overall confidence in this sub-theme was judged to be moderate.
- Sub-theme 2.3: Communication. The overall confidence in this sub-theme was judged to be moderate.
- Sub-theme 2.4: Relationships with healthcare professionals. The overall confidence in this sub-theme was judged to be high.
Main theme 3: Practical
- Sub-theme 3.1: Co-location. The overall confidence in this sub-theme was judged to be very low.
- Sub-theme 3.2: Appointment times. The overall confidence in this sub-theme was judged to be very low.
- Sub-theme 3.3: Referrals. The overall confidence in this sub-theme was judged to be very low.
- Sub-theme 3.4: Waiting times. The overall confidence in this sub-theme was judged to be moderate.
Main theme 4: Technological
- Sub-theme 4.1: Ease of use. The overall confidence in this sub-theme was judged to be very low.
- Sub-theme 4.2: Complements current healthcare management. The overall confidence in this sub-theme was judged to be very low.
Findings from the studies are summarised in GRADE-CERQual tables. See the evidence profiles in appendix F.
Evidence from reference groups and focus groups
The children and young people’s reference groups and focus groups provided additional evidence for this review. A summary of the findings is presented in Table 3.
Table 3
Summary of evidence from reference groups and focus groups.
See the full evidence summary in appendix M.
Evidence from national surveys
The grey literature review of national surveys of children and young people’s experience provided additional evidence for this review. A summary of the findings is presented in Table 4.
Table 4
Summary of the evidence from national surveys.
See the full evidence summary in appendix N.
Economic evidence
Included studies
A systematic review of the economic literature was conducted but no studies were identified which were applicable to this review question. A single economic search was undertaken for all topics included in the scope of this guideline. See supplementary material 6 for details.
Excluded studies
Economic studies not included in this review are listed, and reasons for their exclusion are provided in appendix K.
Summary of studies included in the economic evidence review
No studies were identified which were applicable to this review question.
Economic model
No economic modelling was undertaken for this review because the committee agreed that other topics were higher priorities for economic evaluation.
The committee’s discussion of the evidence
Interpreting the evidence
The outcomes that matter most
This review focused on the views of children and young people in relation to barriers that prevent good continuity of care and how these barriers can be overcome. To address this issue, the review was designed to include qualitative data, and as a result, the committee could not specify in advance the data that would be located. Instead, they identified the following main themes to guide the review:
- Building trusting relationships with healthcare professionals (e.g. with named professional)
- Choice regarding who one sees (e.g. seeing the same healthcare staff)
- Coordination of healthcare (e.g. scheduling appointments with different healthcare professionals or services on same day)
- Distrust of healthcare services
- Fear or stigma related to using services
- Ease of referral or discharge (e.g. from primary to secondary care, or vice-versa)
- Lack of knowledge about NHS structure and related pathways
- Lack of communication between services (e.g. the health, education or social care services)
- Need for single or universal healthcare records
The evidence review provided data relating to most of these themes, and related to practical issues, such as the time taken to get appointments or when they were scheduled, technology, individual factors (for example having knowledge about the healthcare system), and factors which relate to the healthcare professionals, including communication between healthcare staff and communication between healthcare staff and the children, young people, parents or carers. Additional themes which emerged from the data related to the personal lives of children and young people, and waiting times.
The quality of the evidence
The evidence was assessed using GRADE-CERQual methodology, and the overall confidence in the findings ranged from very low to high. The sub-themes were generally downgraded because of the methodological limitations of the included studies, which was assessed using the Critical Appraisal Skills Programme (CASP) checklist. Examples of these are lack of information regarding recruitment methods, poor reporting of how interviews were conducted and lack of reflexivity in data analysis. The evidence was also downgraded due to concerns about the adequacy of data, as some themes only had relatively small amounts of evidence contributing to the finding. The evidence was also downgraded due to relevance, where some themes used evidence from the included systematic reviews (Diffin 2019 and Robards 2018), both of which included young people up to the age of 24 years as well as the views of parents and healthcare professionals.
There was evidence available for all ages of babies, children and young people.
Benefits and harms
The evidence from the sub-theme of relationships with healthcare professionals showed that it was important for children and young people to build a trusting relationship with their healthcare professional, and therefore the committee discussed that seeing the same healthcare professional every time would help with continuity of care. The evidence showed that children and young people who had experienced good continuity of care (and good communication) reported improved engagement and they were more inclined to go back and continue their care if they could see the same person. The committee were not confident that continuous contact with the same health care professional was always possible in reality, and it may be important to discuss the role of a “healthcare team” to ensure trust is developed and continuity of care encouraged.
The evidence also showed that children and young people did not want to have to repeat their healthcare story many times to multiple people, and again the committee agreed that this could be facilitated by seeing the same healthcare professional every time. If that was not possible, then it would be preferable if they could be seen by a member of the same healthcare team who had access to up to date information about the last contact. The committee also discussed, based on their knowledge and experience, that there were other ways to ensure that children and young people did not have to repeat information. These included ‘health passports’ that parents, children and young people could carry with them, or by using digital health records that could be accessed by all healthcare professionals involved in their care. The committee made a recommendation about access to health records as an important tool which could improve continuity of care. There was evidence that children and young people wanted to be able to update their electronic records in between regular appointments so healthcare professionals could stay up to date with their progress, although the committee were aware that many health records systems may not currently allow this, so they did not include this in a recommendation. There was also evidence from the theme on technology that children and young people would monitor their own symptoms if given an electronic method to do this, and that they liked electronic ways of keeping in touch with their healthcare professionals (for example, via messages created from health record apps), but only as a supplement to personal contact. The committee agreed that as these apps may not be widely available they were unable to include this in a specific recommendation.
There was evidence that children and young people who had positive outcomes (for example, a medication working) were more likely to continue to engage in their care, and that unsuccessful treatments (for example, a medication not having the results they had expected) was likely to lead to them disconnecting from the treatment programme altogether. However, the committee did not make a specific recommendation on this as this was based on individual’s clinical situation.
The committee discussed, based on their experience, that robust communication between healthcare professionals should always be in place so that the children, young people, and the parents or carers of babies and young children receive continuity of care. The evidence also showed that good communication was important across different teams and services. The committee agreed that this was particularly important at key points in care such as when a baby, child or young person moves from primary to secondary care, is discharged from hospital, or is transferred from one healthcare setting to another, and they want to be assured that the new team has been fully informed. As well as communication between healthcare professionals, there was evidence that healthcare professionals needed to work collaboratively with children and young people, listen to their concerns and take them seriously. The committee agreed that this meant keeping the children and young people and the parents or carers of babies and young children fully informed. The committee also discussed the fact that, based on their experience, communication should not just be with other healthcare professionals, but that communication to ensure continuity of care may need to include social services and education services.
There was some evidence on the barriers to continuity of healthcare. This included some practical issues such as long waiting times for treatment, or difficulty in getting referrals, which could lead to fragmented care as people may seek other ways of obtaining healthcare (for example by using a different provider or doctor). There was also evidence that factors that contribute towards reduced engagement in an ongoing programme of care include chaotic personal or family lives, lack of family support, feeling discriminated against, and healthcare professionals not using inclusive language or being culturally aware. The committee agreed that the recommendations they had made under the topic on communication by healthcare professionals and information provision already provided guidance on this and so did not make separate recommendations.
There was some evidence that co-location of services may improve access to care, especially for hard-to-reach groups (for example, those who are homeless, live in remote areas, are refugees), and that other practical issues such as not scheduling appointments in school time could help with continuity of care. There was some evidence about knowing how the healthcare system works, knowing what services were available, and needing ongoing support from parents or help from teachers, healthcare professionals or youth workers to navigate the system, but the committee thought this was more relevant to their recommendations on access to care and therefore used it to support their discussion for that topic.
In addition to the systematic review evidence there was evidence from the reference groups and focus groups on continuity of care. This reinforced the evidence from the systematic review with children and young people preferring to see the same people every time, and saying that a kind and caring approach would encourage them to return in the future. There was also feedback that children and young people wanted to avoid repeating their healthcare story by better transfer of information, and also about not repeating healthcare interventions (for example blood tests) due to lack of coordination between healthcare professionals or services.
The evidence from the national surveys also backed up the systematic review evidence. Approximately a third of children and young people, and parents or carers of babies and young children, raised concerns over information provision on discharge from hospital, for example how to look after themselves at home, who to contact if there was a problem, or what would happen to them next, and this affected continuity of care. Similarly, in a cohort of young people who had raised a concern or made a complaint, a third of these related to admission, discharge, transfer, or lack of communication between services. Young people with disabilities and care leavers reported that they needed special consideration on discharge or on leaving care to ensure continuity of their healthcare provision, and the committee agreed that this may apply to children with complex medical conditions as well.
For the parents of babies on a neonatal unit there was mixed evidence: communication of information between members of staff was reported as good, although some parents reported that conflicting information was given to parents. Parents reported a good discharge process with positive views on preparation for discharge, but lower scores for information on what to expect in terms of their baby’s recovery and progress. The committee agreed that this evidence reinforced the importance of their recommendations on ensuring adequate communication at key points in care, such as on discharge.
The only potential harm the committee identified from the evidence or from their recommendations on continuity of care, was that over-reliance on digital tools (such as digital health records or passports) may disadvantage children and young people who do not have access to digital technology, and in these cases an alternative would have to be available.
Cost effectiveness and resource use
There was no existing economic evidence for this review. The committee explained that implementing more integrated and ideally digital systems to share information with and between healthcare professionals, other services and children and young people or the parents and carers of babies and young children may have resource implications for the health service. Also, there may be a need for improved administration support to facilitate the sharing of information which may also have resource implications. The committee noted potential benefits that include the improved experience of care and outcomes. For example, timely information being available to professionals may reduce delays in care etc. More efficient coordination of care may potentially have an impact on service use outcomes including frequency of primary and secondary care visits with less duplication of work. Overall the committee was of a view that practices implied by the recommendations in this area would represent a more efficient running of services and would represent a value for money to the health service.
Recommendations supported by this evidence review
This evidence review supports recommendations 1.10.12 to 1.10.17 in the NICE guideline.
References
Davison 2017
Davison, Jo, Zamperoni, Victoria, Stain, Helen J., Vulnerable young people’s experiences of child and adolescent mental health services, Mental Health Review Journal, 22, 95–110, 2017Diffin 2019
Diffin, Janet, Byrne, Bronagh, Kerr, Helen, Price, Jayne, Abbott, Aine, McLaughlin, Dorry, O’Halloran, Peter, The usefulness and acceptability of a personal health record to children and young people living with a complex health condition: A realist review of the literature, Child: care, health and development, 45, 313–332, 2019 [PMC free article: PMC6519173] [PubMed: 30817012]Diwakar 2019
Diwakar, L., Cummins, C., Hackett, S., Rees, M., Charles, L., Kerrigan, C., Creed, H., Roberts, T., Parent experiences with paediatric allergy pathways in the West Midlands: A qualitative study, Clinical & Experimental Allergy, 4, 4, 2109 [PMC free article: PMC6446821] [PubMed: 30609142]Harper 2014
Harper, B., Dickson, J. M., Bramwell, R., Experiences of young people in a 16-18 Mental Health Service, Child and Adolescent Mental Health, 19, 90–96, 2014 [PubMed: 32878383]Law 2020
Law, H., Gee, B., Dehmahdi, N., Carney, R., Jackson, C., Wheeler, R., Carroll, B., Tully, S., Clarke, T., What does recovery mean to young people with mental health difficulties?-“It’s not this magical unspoken thing, it’s just recovery”, Journal of Mental Health, 2020 [PubMed: 32186236]O’Reilly 2013
O’Reilly, M., Vostanis, P., Taylor, H., Day, C., Street, C., Wolpert, M., Service user perspectives of multiagency working: A qualitative study with children with educational and mental health difficulties and their parents, Child and Adolescent Mental Health, 18, 202–209, 2013 [PubMed: 32847304]Price 2011
Price, C. S., Corbett, S., Lewis-Barned, N., Morgan, J., Oliver, L. E., Dovey-Pearce, G., Implementing a transition pathway in diabetes: a qualitative study of the experiences and suggestions of young people with diabetes, Child: care, health and development, 37, 852–860, 2011 [PubMed: 22007985]Robards 2018
Robards, F., Kang, M., Usherwood, T., Sanci, L., How Marginalized Young People Access, Engage With, and Navigate Health-Care Systems in the Digital Age: Systematic Review, Journal of Adolescent Health, 365–381, 2018 [PubMed: 29429819]Sime 2014
Sime, D., ‘I think that Polish doctors are better’: Newly arrived migrant children and their parents’ experiences and views of health services in Scotland, Health and Place, 30, 86–93, 2014 [PubMed: 25237717]Waite-Jones 2018
Waite-Jones, J. M., Majeed-Ariss, R., Smith, J., Stones, S. R., Van Rooyen, V., Swallow, V., Young People’s, Parents’, and Professionals’ Views on Required Components of Mobile Apps to Support Self-Management of Juvenile Arthritis: Qualitative Study, JMIR MHealth and UHealth, 6, e25, 2018 [PMC free article: PMC5797289] [PubMed: 29351898]Whale 2017
Whale, K., Cramer, H., Wright, A., Sanders, C., Joinson, C., ‘What does that mean?’: A qualitative exploration of the primary and secondary clinical care experiences of young people with continence problems in the UK, BMJ Open, 7, e015544, 2017 [PMC free article: PMC5652505] [PubMed: 29042374]
Appendices
Appendix A. Review protocol
Appendix B. Literature search strategies
Appendix C. Clinical evidence study selection
Appendix D. Clinical evidence tables
Appendix E. Forest plots
Forest plots for review question: What factors promote, or present barriers to, continuity of care for babies, children and young people?
No meta-analysis was conducted for this review question and so there are no forest plots.
Appendix F. GRADE-CERQual tables
Appendix G. Economic evidence study selection
Economic evidence study selection for review question: What factors promote, or present barriers to, continuity of care for babies, children and young people?
No economic evidence was identified which was applicable to this review question.
Appendix H. Economic evidence tables
Economic evidence tables for review question: What factors promote, or present barriers to, continuity of care for babies, children and young people?
No evidence was identified which was applicable to this review question.
Appendix I. Economic evidence profiles
Economic evidence profiles for review question: What factors promote, or present barriers to, continuity of care for babies, children and young people?
No economic evidence was identified which was applicable to this review question.
Appendix J. Economic analysis
Economic evidence analysis for review question: What factors promote, or present barriers to, continuity of care for babies, children and young people?
No economic analysis was conducted for this review question.
Appendix K. Excluded studies
Excluded studies for review question: What factors promote, or present barriers to, continuity of care for babies, children and young people?
Clinical studies
Table 11Excluded studies and reasons for their exclusion
| Study | Reason for Exclusion |
|---|---|
| Aagaard, H., Hall, E. O. C., Ludvigsen, M. S., Uhrenfeldt, L., Fegran, L., Parents’ experiences of neonatal transfer. A meta-study of qualitative research 2000-2017, Nursing InquiryNurs Inq, 15, 15, 2018 [PubMed: 29446189] | Population not in protocol - parent-centred views on neonatal transfer, not a suitable proxy for neonates |
| Abbott, David, Carpenter, John, “The things that are inside of you are horrible”: Children and young men with Duchenne muscular dystrophy talk about the impact of living with a long-term condition, Child Care in Practice, 21, 67–77, 2015 | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Abraham, J., Kannampallil, T., Caskey, R. N., Kitsiou, S., Emergency department-based care transitions for pediatric patients: A systematic review, Pediatrics, 138 (2) (no pagination), 2016 [PubMed: 27388499] | No qualitative data extracted or analysed. Included studies checked for inclusion. |
| Adams, N., Churchill, R., Eve, E., Chronic widespread pain in adolescents: A primary care based study, European Journal of Pain Supplements, 5 (1), 146, 2011 | Conference abstract |
| Agnew, T., Shared experience, Nursing Standard, 26, 22–4, 2012 [PubMed: 22953402] | Narrative review |
| Ahmed, M., Boyd, C., Vavilikolanu, R., Rafique, B., Visual symptoms and childhood migraine: Qualitative analysis of duration, location, spread, mobility, colour and pattern, Cephalalgia, 38, 2017–2025, 2018 [PubMed: 29629600] | Study design not in protocol - no qualitative analysis |
| Ahmed, S., Ihe, C., Findings from a pre-clinic questionnaire given prior consultation at an NHS paediatric diabetes outpatient service in England-the patient’s perspective: A survey of patient/carer experience of a paediatric diabetes outpatient service, Pediatric Diabetes, 17 (Supplement 24), 127–128, 2016 [PubMed: 25594864] | Conference abstract |
| Ahuja, Alka S., Williams, Richard, Telling stories: Learning from patients’ and families’ experiences of specialist child and adolescent mental health services, International Journal of Consumer Studies, 34, 603–609, 2010 | Population not in protocol - 15 families with children between 5-15 years old. Only 2 children participated in interviews. No way of identifying which themes used data from these participants. |
| Ainslie, Susan, Foster, Rob, Groves, Jean, Grime, Kate, Straker, Katherine, Woolhouse, Clare, ‘Making children count’: An exploration of the implementation of the Every Child Matters agenda, Education 3-13, 38, 23–38, 2010 | Population not in protocol - parents of children >3 years but no way of matching data origin with age of child |
| Aiyer, S., Issit, R., Rogers, Y., Sebire, N. J., Research and design for cardiac perfusion-visualisation of data ‘quality markers’, Archives of disease in childhood, 103 (Supplement 2), A54, 2018 | Conference poster |
| Al Maghaireh, Dua’a Fayiz, Abdullah, Khatijah Lim, Chan, Chong Mei, Piaw, Chua Yan, Al Kawafha, Mariam Mofleh, Systematic review of qualitative studies exploring parental experiences in the Neonatal Intensive Care Unit, Journal of Clinical Nursing, 25, 2745–2756, 2016 [PubMed: 27256250] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Al-bedaery, R., Brown, H., Common adolescent and paediatric gynaecological referrals and the development of a targeted patient information leaflet, BJOG: An International Journal of Obstetrics and Gynaecology, 1), 346, 2013 [PubMed: 23190251] | Conference poster |
| Albutt, A. K., O’Hara, J. K., Conner, M. T., Fletcher, S. J., Lawton, R. J., Is there a role for patients and their relatives in escalating clinical deterioration in hospital? A systematic review, Health ExpectationsHealth Expect, 20, 818–825, 2017 [PMC free article: PMC5600219] [PubMed: 27785868] | No qualitative data extracted or analysed. Included studies checked for inclusion. |
| Al-Harthy, Z. S., Cowling, J. P., Mann, G. K., Salama, M., Medical intervention for children with medical complexity (MICMAC), Archives of disease in childhood, 3), A127–A128, 2015 | Conference abstract |
| Ali, Nasreen, McLachlan, Niel, Kanwar, Shama, Randhawa, Gurch, Pakistani young people’s views on barriers to accessing mental health services, International Journal of Culture and Mental Health, 10, 33–43, 2017 | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Alins Sahun, Y., Camara, K., Gething, K., Gane, J., Schenck, D., Tse, Y., School-based diabetes clinics: QI to engage frequent non-attenders and improve teenager’s self-management, Archives of disease in childhood, 103 (Supplement 1), A158, 2018 | Conference abstract |
| Alins Sahun, Y., Camara, K., Gething, K., Shenck, D., Gane, J., Tse, Y., Setting up school-based diabetes clinics to engage adolescents who frequently ‘were not brought to clinic’ and improve self-management, Archives of Disease in Childhood., 2019 [PubMed: 31005894] | Study design not in protocol - no qualitative analysis |
| Allcock, D., Smith, K., Exploring parent views of community matrons, Nursing Times, 110, 21–23, 2014 [PubMed: 24834602] | Study design not in protocol - no qualitative analysis |
| Allen, D., Gillen, E., Rixson, L., The Effectiveness of Integrated Care Pathways for Adults and Children in Health Care Settings: A Systematic Review, JBI Library of Systematic Reviewis, 7, 80–129, 2009 [PubMed: 27820426] | No qualitative data extracted or analysed. Included studies checked for inclusion. |
| Allen, N., McFarlane, L., Shanahan, R., Bassett, E. Z. A., Wellcome home: The work of shelter, a charitable organisation in facilitating the discharge of children with medical complexities (CMIC) at birmingham children’s hospital, Developmental medicine and child neurology, 59 (Supplement 4), 76, 2017 | Conference abstract |
| Allerton, L., Emerson, E., British adults with chronic health conditions or impairments face significant barriers to accessing health services, Public Health, 126, 920–927, 2012 [PubMed: 22959282] | Study design not in protocol - no qualitative data reported |
| Almunef, M., Mason, J., Curtis, C., Jalal, Z., Management of chronic illness in young people aged 10-24 years: A systematic review to explore the role of primary care pharmacists, Archives of Disease in Childhood, 104, 2019 | Conference abstract |
| Almunef, M., Mason, J., Curtis, C., Jalal, Z., The role of primary care pharmacist in the management of chronic illnesses in young people aged 10-24 years: A systematic review, International Journal of Pharmacy Practice, 27, 48–49, 2019 | Poster Abstract |
| Alonso, J., Liu, Z., Evans-Lacko, S., Sadikova, E., Sampson, N., Chatterji, S., Abdulmalik, J., Aguilar-Gaxiola, S., Al-Hamzawi, A., Andrade, L. H., Bruffaerts, R., Cardoso, G., Cia, A., Florescu, S., de Girolamo, G., Gureje, O., Haro, J. M., He, Y., de Jonge, P., Karam, E. G., Kawakami, N., Kovess-Masfety, V., Lee, S., Levinson, D., Medina-Mora, M. E., Navarro-Mateu, F., Pennell, B. E., Piazza, M., Posada-Villa, J., Ten Have, M., Zarkov, Z., Kessler, R. C., Thornicroft, G., W. H. O. World Mental Health Survey Collaborators, Treatment gap for anxiety disorders is global: Results of the World Mental Health Surveys in 21 countries, Depression & Anxiety, 35, 195–208, 2018 [PMC free article: PMC6008788] [PubMed: 29356216] | Population not in protocol - UK not among countries sampled |
| Amin, A., Oragui, E., Khan, W., Puri, A., Psychosocial considerations of perioperative care in children, with a focus on effective management strategies, Journal of perioperative practice, 20, 198–202, 2010 [PubMed: 20586358] | Narrative review |
| Amsalem, D., Hasson-Ohayon, I., Gothelf, D., Roe, D., Subtle ways of stigmatization among professionals: The subjective experience of consumers and their family members, Psychiatric rehabilitation journal, 41, 163–168, 2018 [PubMed: 29985015] | Population not in protocol - mean age 26.5 years old with no way of identifying which themes used data from <18 years |
| Anderson, C., Lupfer, A., Shattuck, P. T., Barriers to receipt of services for young adults with autism, Pediatrics, 141, S300–S305, 2018 [PubMed: 29610411] | Country not in protocol - America |
| Anderson, C., Roy, T., Patient experiences of taking antidepressants for depression: A secondary qualitative analysis, Research in Social and Administrative Pharmacy, 9, 884–902, 2013 [PubMed: 23219056] | Population not in protocol - age 17-75 with no way of identifying which themes used data from <18 years |
| Anderson, Joanna K., Howarth, Emma, Vainre, Maris, Jones, Peter B., Humphrey, Ayla, A scoping literature review of service-level barriers for access and engagement with mental health services for children and young people, Children and Youth Services Review, 77, 164–176, 2017 | Literature review |
| Andrade, L. H., Alonso, J., Mneimneh, Z., Wells, J. E., Al-Hamzawi, A., Borges, G., Bromet, E., Bruffaerts, R., de Girolamo, G., de Graaf, R., Florescu, S., Gureje, O., Hinkov, H. R., Hu, C., Huang, Y., Hwang, I., Jin, R., Karam, E. G., Kovess-Masfety, V., Levinson, D., Matschinger, H., O’Neill, S., Posada-Villa, J., Sagar, R., Sampson, N. A., Sasu, C., Stein, D. J., Takeshima, T., Viana, M. C., Xavier, M., Kessler, R. C., Barriers to mental health treatment: results from the WHO World Mental Health surveys, Psychological medicine, 44, 1303–1317, 2014 [PMC free article: PMC4100460] [PubMed: 23931656] | Population not in protocol - UK not among countries sampled |
| Andrews, H., A divisive set-up: The problems caused by the separation of medical and surgical neonatal services, Archives of Disease in Childhood: Fetal and Neonatal Edition, 99, A26, 2014 | Conference poster |
| Arai, L., Bettany-Saltikov, J., Hamilton, S., Findings from a small-scale, exploratory content analysis of information provided to AIS patients and their parents from NHS Scoliosis Hospital Clinics, Scoliosis. Conference: 9th International Conference on Conservative Management of Spinal Deformities SOSORT, 8, 2012 | Conference abstract |
| Arai, L., Stapley, S., Roberts, H., ‘Did not attends’ in children 0-10: a scoping review, Child: care, health and development, 40, 797–805, 2014 [PubMed: 24134800] | Scoping review. Included studies checked for inclusion. |
| Arain, M., Nicholl, J., Campbell, M., Patients’ experience and satisfaction with GP led walk-in centres in the UK; a cross sectional study, BMC health services research, 13, 142, 2013 [PMC free article: PMC3637583] [PubMed: 23597132] | Population not in protocol - mean age 31.5 with no way of identifying data from <18 years |
| Arenson, M., Hudson, P. J., Lee, N., Lai, B., The Evidence on School-Based Health Centers: A Review, Lobal Pediatric HealthGlob, 6, 2333794X19828745, 2019 [PMC free article: PMC6381423] [PubMed: 30815514] | Duplicate |
| Arenson, Michael, Hudson, Philip J., Lee, NaeHyung, Lai, Betty, The Evidence on School-Based Health Centers: A Review, Global pediatric health, 6, 2333794X19828745, 2019 [PMC free article: PMC6381423] [PubMed: 30815514] | Setting not in protocol: School-based health centres in the USA |
| Arheiam, A., Albadri, S., Laverty, L., Harris, R., Reasons for low adherence to diet-diaries issued to pediatric dental patients: A collective case study, Patient Preference and Adherence, 12, 1401–1411, 2018 [PMC free article: PMC6078093] [PubMed: 30122905] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Aston, Hermione J., Lambert, Nathan, Young people’s views about their involvement in decision-making, Educational Psychology in Practice, 26, 41–51, 2010 | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Aston, J., Huynh, C., Sinclair, A., Wilson, K., Terry, D., Medication Review of Children on Long Term Medications: A Review of the Literature, Archives of disease in childhood, 101, e2, 2016 [PubMed: 27540228] | Conference abstract |
| Aston, J., Wilson, K. A., Terry, D. R. P., The treatment-related experiences of parents, children and young people with regular prescribed medication, International journal of clinical pharmacy, 41, 113–121, 2019 [PMC free article: PMC6394506] [PubMed: 30478490] | Population not in protocol - 1 adolescent and 23 parents with no information on the ages of their children |
| Aston, J., Wilson, K., Terry, D., Starting a new medicine study, Archives of disease in childhood, 101 (9), A28, 2016 [PubMed: 27540240] | Conference abstract |
| Atherton, H., Pappas, Y., Heneghan, C., Murray, E., Experiences of using email for general practice consultations: A qualitative study, British journal of general practice, 63, e760–e767, 2013 [PMC free article: PMC3809429] [PubMed: 24267859] | Population not in protocol – aged ≥16 years. Sub-group of 16-24 with no way of identifying which themes used data from under 18s |
| Atkins, E., Colville, G., John, M., A ‘biopsychosocial’ model for recovery: A grounded theory study of families’ journeys after a Paediatric Intensive Care Admission, Intensive and Critical Care Nursing, 28, 133–140, 2012 [PubMed: 22225816] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Atkins, E., Colville, G., John, M., Finding the way to a ‘new normal’: Families’ recovery in the year after a paediatric intensive care admission, Pediatric critical care medicine, 1), A3–A4, 2011 | Conference abstract |
| Babakinejad, P., Arujuna, N. R., Caruana, D. M., Venables, Z. C., Tan, S. P., Atkar, R., George, S. M. C., Chalmers, J. R., Batchelor, J. M., Order and timing of applying emollients and topical corticosteroids in atopic eczema: A survey of U.K. patients and healthcare professionals, British Journal of Dermatology, 175 (Supplement 1), 77, 2016 | Conference poster |
| Babbage, C., Jackson, G. M., Nixon, E., Desired Features of a Digital Technology Tool for Self-Management of Well-Being in a Nonclinical Sample of Young People: Qualitative Study, JMIR Mental Health, 5, e10067, 2018 [PMC free article: PMC6315233] [PubMed: 30563820] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Badri, P., Saltaji, H., Flores-Mir, C., Amin, M., Factors affecting children’s adherence to regular dental attendance: a systematic review, Journal of the American Dental Association (1939), 145, 817–828, 2014 [PubMed: 25082930] | No qualitative data extracted or analysed. Included studies checked for inclusion. |
| Bailey,S., Taylor,A., Kent,A., More space, Better quality care?Parents’ perception of quality of care prior to and after neonatal unit relocation, Intensive Care Medicine, 37, S428–S429, 2011 | Conference abstract |
| Bains, R. M., African American adolescents and mental health care: a metasynthesis, Journal of child and adolescent psychiatric nursing : official publication of the Association of Child and Adolescent Psychiatric Nurses, Inc, 27, 83–92, 2014 [PubMed: 24724920] | Country: USA |
| Balato, N., Megna, M., Di Costanzo, L., Balato, A., Ayala, F., Educational and motivational support service: a pilot study for mobile-phone-based interventions in patients with psoriasis, British journal of dermatology, 168, 201–205, 2013 [PubMed: 23240729] | Population not in protocol – Adults aged 18-65 years |
| Ball, S. L., Newbould, J., Corbett, J., Exley, J., Pitchforth, E., Roland, M., Qualitative study of patient views on a ‘telephone-first’ approach in general practice in England: Speaking to the GP by telephone before making face-to-face appointments, BMJ open, 8 (12) (no pagination), 2018 [PMC free article: PMC6318515] [PubMed: 30598491] | Population not in protocol - adult population with ages not reported |
| Bancroft, V., Ganesan, V., Pistrang, N., Murphy, T., How adolescents and their parents understand and manage paediatric stroke, Developmental Medicine and Child Neurology, 3), 14–15, 2010 [PubMed: 19811513] | Conference abstract |
| BaniHani, A., Deery, C., Toumba, J., Munyombwe, T., Duggal, M., The impact of dental caries and its treatment by conventional or biological approaches on the oral health-related quality of life of children and carers, International journal of paediatric dentistry, 28, 266–276, 2018 [PubMed: 29288546] | Study design not in protocol - no qualitative analysis |
| Banks, J., Cramer, H., Sharp, D. J., Shield, J. P., Turner, K. M., Identifying families’ reasons for engaging or not engaging with childhood obesity services: a qualitative study, Journal of child health care, 18, 101–110, 2014 [PubMed: 23728931] | Population not in protocol - parental views of children >5 years old. Children present in some interviews but no way of identifying which themes used data from them |
| Barber, S., Bekker, H., Marti, J., Pavitt, S., Khambay, B., Meads, D., Development of a Discrete-Choice Experiment (DCE) to Elicit Adolescent and Parent Preferences for Hypodontia Treatment, Patient, 12, 137–148, 2019 [PMC free article: PMC6335368] [PubMed: 30367434] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Barber, S., Pavitt, S., Meads, D., Khambay, B., Bekker, H., Can the current hypodontia care pathway promote shared decision-making?, Journal of orthodontics, 46, 126–136, 2019 [PubMed: 31060465] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Best, Paul, Gil-Rodriguez, Elena, Manktelow, Roger, Taylor, Brian J., Seeking help from everyone and no-one: Conceptualizing the online help-seeking process among adolescent males, Qualitative health research, 26, 1067–1077, 2016 [PubMed: 27179020] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Bloom, Kathleen, Tam, Jane A., Walk-in services for child and family mental health, Journal of Systemic Therapies, 34, 61–77, 2015 | No qualitative data extracted or analysed. Included studies checked for inclusion. |
| Branson, C. E., Clemmey, P., Mukherjee, P., Text message reminders to improve outpatient therapy attendance among adolescents: a pilot study, Psychological services, 10, 298–303, 2013 [PubMed: 23937089] | Country: USA |
| Brown, A., Rice, S. M., Rickwood, D. J., Parker, A. G., Systematic review of barriers and facilitators to accessing and engaging with mental health care among at-risk young people, Asia-Pacific psychiatry : Official Journal of the Pacific Rim College of PsychiatristsAsia Pac Psychiatry, 8, 3–22, 2016 [PubMed: 26238088] | Later version of systematic review using similar population included (Robards 2018). Excluded this systematic review to prevent double counting of studies. |
| Chandra-Mouli, V., Lenz, C., Adebayo, E., Lang Lundgren, I., Gomez Garbero, L., Chatteriee, S., A systematic review of the use of adolescent mystery clients in assessing the adolescent friendliness of health services in high, middle, and low-income countries, Global health action, 11, 1536412, 2018 [PMC free article: PMC6282470] [PubMed: 30482103] | No qualitative data extracted or analysed. Included studies checked for inclusion. |
| Colucci, Erminia, Szwarc, Josef, Minas, Harry, Paxton, Georgia, Guerra, Carmel, The utilisation of mental health services by children and young people from a refugee background: A systematic literature review, International Journal of Culture and Mental Health, 7, 86–108, 2014 | No qualitative data extracted or analysed. Included studies checked for inclusion. |
| Connolly, M., Fortuna, R. J., Snyder, E. D., Weppner, W. G., Impacts of improved continuity of care in resident primary care clinics on patient outcomes: A systematic review, Journal of General Internal Medicine, 34 (2 Supplement), S254, 2019 | Conference abstract |
| Corcoran, P. M., Catling, C., Homer, C. S. E., Models of midwifery care for Indigenous women and babies: A meta-synthesis, Women and Birth, 30, 77–86, 2017 [PubMed: 27612623] | Phenomenon of interest not in protocol - continuity of care relating to maternal care only |
| Dale, H., Watson, L., Adair, P., Moy, M., Humphris, G., The perceived sexual health needs of looked after young people: findings from a qualitative study led through a partnership between public health and health psychology, Journal of Public Health, 33, 86–92, 2011 [PubMed: 20688783] | Health promotion excluded as per protocol |
| Davey, A., Asprey, A., Carter, M., Campbell, J. L., Trust, negotiation, and communication: young adults’ experiences of primary care services, BMC family practice, 14, 202, 2013 [PMC free article: PMC3880848] [PubMed: 24373254] | Population not in protocol - participants <18 years |
| Davison, Jo, Zamperoni, Victoria, Stain, Helen J., Vulnerable young people’s experiences of child and adolescent mental health services, Mental Health Review Journal, 22, 95–110, 2017 | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| De La Cruz, L. F., Jassi, A., Kolvenbach, S., Vidal-Ribas, P., Llorens, M., Mataix-Cols, D., Children from ethnic minorities with obsessive-compulsive disorder: Service use inequalities, reasons behind these inequalities, and treatment outcomes, European Child and Adolescent Psychiatry, 1), S94, 2015 | Conference abstract |
| De Vito, E., De Waure, C., Specchia, M. L., Parente, P., Azzolini, E., Frisicale, E. M., Favale, M., Teleman, A. A., Ricciardi, W., Are undocumented migrants’ entitlements and barriers to healthcare a public health challenge for the European Union?, Public Health Reviews, 37, 13, 2016 [PMC free article: PMC5810097] [PubMed: 29450055] | Narrative review. Included studies checked for inclusion. |
| Desai, A. D., Popalisky, J., Simon, T. D., Mangione-Smith, R. M., The effectiveness of family-centered transition processes from hospital settings to home: A review of the literature, Hospital Pediatrics, 5, 219–231, 2015 [PubMed: 25832977] | Narrative review. Included studies checked for inclusion. |
| Dhaliwal, Jasmine, Nosworthy, Nicole M., Holt, Nicholas L., Zwaigenbaum, Lonnie, Avis, Jillian L., Rasquinha, Allison, Ball, Geoff D., Attrition and the management of pediatric obesity: An integrative review, Childhood Obesity, 10, 461–473, 2014 [PubMed: 25496035] | No qualitative data extracted or analysed. Included studies checked for inclusion. |
| Dhital, R., Whittlesea, C. M., Norman, I. J., Milligan, P., Community pharmacy service users’ views and perceptions of alcohol screening and brief intervention, Drug and Alcohol Review, 29, 596–602, 2010 [PubMed: 20973842] | Population not in protocol - Adults aged >18 years |
| Dickinson, K., Parr, M., Robinson, L., Bennett, E., Hancox, T., White, P., Spencer, R., Webb, N., Walker, D., Neuro-oncology survivorship project (NOSP) to support transition to home, rehabilitation, education and vocational development, Pediatric Blood and Cancer, 62 (Supplement 4), S197–S198, 2015 | Conference abstract |
| Dickinson, K., Parr, M., Walker, D., Robinson, L., Bennett, E., Webb, N., Hancox, T., White, P., Spencer, R., Moving on, Neuro-Oncology, 8), viii18, 2015 | Conference abstract |
| Dickson, C. M., Every child has the right to smile!--A qualitative study exploring barriers to dental registration in a SureStart area in Northern Ireland, Community practitioner : the journal of the Community Practitioners’ & Health Visitors’ Association, 88, 36–9, 41, 2015 [PubMed: 26368995] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Diffin, Janet, Byrne, Bronagh, Kerr, Helen, Price, Jayne, Abbott, Aine, McLaughlin, Dorry, O’Halloran, Peter, The usefulness and acceptability of a personal health record to children and young people living with a complex health condition: A realist review of the literature, Child: care, health and development, 45, 313–332, 2019 [PMC free article: PMC6519173] [PubMed: 30817012] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Dominguez, M. D. G., Fisher, H. L., Johnson, S., Hodes, M., Differential pathways to care in first episode psychosis: Adolescents versus adults, European Child and Adolescent Psychiatry, 1), S167, 2013 | Conference abstract |
| Donaldson, L., Subramanian, A., Conway, M. L., Eye care in young children: a parent survey exploring access and barriers, Clinical & experimental optometry, 101, 521–526, 2018 [PubMed: 29635865] | Study design not in protocol - quantitative, close-questions questionnaire |
| Dooris, M., McArt, D., Hurley, M. A., Baybutt, M., Probation as a setting for building well-being through integrated service provision: evaluating an Offender Health Trainer service, Perspectives in Public Health, 133, 199–206, 2013 [PubMed: 23670905] | Population not in protocol - participants ≥18 years |
| Dotson, J., Bricker, J., Crandall, W., Chisolm, D., Mackner, L., Barriers to pediatric inflammatory bowel disease care at time of diagnosis: Results from a prospective cohort, Journal of Pediatric Gastroenterology and Nutrition, 67 (Supplement 1), S184–S185, 2018 | Conference abstract |
| Dovey-Pearce, Gail, Price, Christine, Wood, Helen, Scott, Tracy, Cookson, Jennifer, Corbett, Sally, Young people (13 to 21) with disabilities in transition from childhood to adulthood: An exploratory, qualitative study of their developmental experiences and health care needs, Educational and Child Psychology, 29, 86–100, 2012 | Population not in protocol - 13-21 years with 82% 16-21 |
| Drewett, O., Hann, G., Price, N., Tipper, C., Devereux, E., A qualitative study to explore the use of the RCPCH epilepsy passport, Archives of disease in childhood, 102 (Supplement 1), A150, 2017 | Conference abstract |
| Dror, S., Kohn, Y., Avichezer, M., Sapir, B., Levy, S., Canetti, L., Kianski, E., Zisk-Rony, R. Y., Transitioning home: A four-stage reintegration hospital discharge program for adolescents hospitalized for eating disorders, Journal for Specialists in Pediatric Nursing: JSPN, 20, 271–9, 2015 [PubMed: 26112899] | Country: Israel |
| Dugdale, E., Gerrard, G., Priestley, L., Mariappan, L., Choong, E. S., Follow up of low risk thyroid cancer patients by specialist nurse phone consultations rather than via clinic visits, European Thyroid Journal, 1), 165–166, 2014 | Conference abstract |
| Duran, C., Curtis-Tyler, K., Exploring children’s healthcare experiences of haematopoietic stem cell transplantation (HSCT)-a small scale study for service improvement, Bone Marrow Transplantation, 1), S257, 2016 | Poster abstract |
| Eaton, S., Biggerstaff, D., Petrou, S., Osipenko, L., Gibbs, J., Estcourt, C. S., Sadiq, T., Szczepura, A., Young people’s preferences for the use of emerging technologies for asymptomatic regular chlamydia testing and management: A discrete choice experiment in England, BMJ open, 9 (1) (no pagination), 2019 [PMC free article: PMC6352830] [PubMed: 30700477] | Study design not in protocol - no qualitative analysis |
| Edmonds, J., Twycross, A., Mothers’ experiences of managing their child’s pain before and during attendance at the emergency department, Journal of Clinical Nursing, 27, 2003–2013, 2018 [PubMed: 29493831] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Edwards, R., Dyoss, M., Hesslewood, J., Improving the use of community pharmacies among 16-24 year olds in the Dudley borough, International journal of pharmacy practice, 2), 31–32, 2011 | Conference abstract |
| Egbunike, J. N., Shaw, C., Porter, A., Button, L. A., Kinnersley, P., Hood, K., Bowden, S., Bale, S., Snooks, H., Edwards, A., Streamline triage and manage user expectations: lessons from a qualitative study of GP out-of-hours services, British Journal of General Practice, 60, e83–97, 2010 [PMC free article: PMC2828862] [PubMed: 20202350] | Population not in protocol - parents of <10 years old and people >16 years old with no way of identifying which themes used data from which age groups |
| Ellis, J., Boger, E., Latter, S., Kennedy, A., Jones, F., Foster, C., Demain, S., Conceptualisation of the ‘good’ self-manager: A qualitative investigation of stakeholder views on the self-management of long-term health conditions, Social Science and Medicine, 176, 25–33, 2017 [PubMed: 28126586] | Population not in protocol - adults ≥18 years |
| Evans, N., Experiences of a child and adolescent mental health service, Nursing Children and Young People, 29, 41–45, 2017 [PubMed: 28604203] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Evans-Lacko, S., Gronholm, P., Roberts, R., Laurens, K., Stigma and other barriers to health and social care services among youth in Greater London, Psychiatrische Praxis. Conference: 9th International Conference of the European Network for Mental Health Service Evaluation, ENMESH, 38, 2011 | Conference abstract |
| Fagerstad, A., Windahl, J., Arnrup, K., Understanding avoidance and non-attendance among adolescents in dental care - an integrative review, Community dental health, 33, 195–207, 2016 [PubMed: 28509515] | No qualitative data extracted or analysed. Included studies checked for inclusion. |
| Fargas-Malet, Montserrat, McSherry, Dominic, The mental health and help-seeking behavior of children and young people in care in Northern Ireland: Making services accessible and engaging, British Journal of Social Work, 48, 578–595, 2018 | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Fawcett, R., Porritt, K., Stern, C., Carson-Chahhoud, K., Experiences of parents and carers in managing asthma in children: A qualitative systematic review, JBI Database of Systematic Reviews and Implementation Reports, 17, 793–984, 2019 [PubMed: 31090652] | Population of included studies not in protocol. Included studies checked for inclusion. |
| Flynn, Rachel, Walton, Sarah, Scott, Shannon D., Engaging children and families in pediatric Health Research: a scoping review, Research involvement and engagement, 5, 32, 2019 [PMC free article: PMC6827239] [PubMed: 31700676] | Scoping review. Included studies checked for inclusion. |
| Foster, M. J., Whitehead, L., Maybee, P., Cullens, V., The parents’, hospitalized child’s, and health care providers’ perceptions and experiences of family centered care within a pediatric critical care setting: a metasynthesis of qualitative research, Journal of Family Nursing, 19, 431–468, 2013 [PubMed: 23884697] | Phenomenon of interest not in protocol - themes relating to continuity of healthcare but these as heavily parent and professional influenced |
| Gill, F., Butler, S., Pistrang, N., The experience of adolescent inpatient care and the anticipated transition to the community: Young people’s perspectives, Journal of Adolescence, 46, 57–65, 2016 [PubMed: 26599528] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Goossens, E., Bovijn, L., Gewillig, M., Budts, W., Moons, P., Predictors of care gaps in adolescents with complex chronic condition transitioning to adulthood, Pediatrics, 137, 2016 [PubMed: 26940985] | No qualitative data extracted or analysed. Included studies checked for inclusion. |
| Graham, T., Rose, D., Murray, J., Ashworth, M., Tylee, A., User-generated quality standards for youth mental health in primary care: A participatory research design using mixed methods, BMJ Quality and Safety, 23, 857–866, 2014 [PMC free article: PMC4173988] [PubMed: 24920648] | Outcomes not in protocol - user-generated quality standards |
| Gurung, G., Richardson, A., Wyeth, E., Edmonds, L., Derrett, S., Child/youth, family and public engagement in paediatric services in high-income countries: A systematic scoping review, Health expectations : an international journal of public participation in health care and health policy, 23, 261–273, 2020 [PMC free article: PMC7104655] [PubMed: 31981295] | Scoping review. Included studies checked for inclusion. |
| Haig-Ferguson, A., Loades, M., Whittle, C., Read, R., Higson-Sweeney, N., Beasant, L., Starbuck, J., Crawley, E., “It’s not one size fits all”; the use of videoconferencing for delivering therapy in a Specialist Paediatric Chronic Fatigue Service, Internet Interventions, 15, 43–51, 2019 [PMC free article: PMC6312867] [PubMed: 30619719] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Harper, B., Dickson, J. M., Bramwell, R., Experiences of young people in a 16-18 Mental Health Service, Child and Adolescent Mental Health, 19, 90–96, 2014 [PubMed: 32878383] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Heath, G., Greenfield, S., Redwood, S., The meaning of ‘place’ in families’ lived experiences of paediatric outpatient care in different settings: A descriptive phenomenological study, Health and Place, 31, 46–53, 2015 [PubMed: 25463917] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Hughes, V. C., Phillips, S., Exploring the pre-hospitalisation needs of parents of children with cystic fibrosis, Journal of Cystic Fibrosis, 13, S115, 2014 | Poster abstract |
| Hynes, L., Byrne, M., Casey, D., Dinneen, S. F., O’Hara, M. C., ‘It makes a difference, coming here’: A qualitative exploration of clinic attendance among young adults with type 1 diabetes, British journal of health psychology, 20, 842–858, 2015 [PubMed: 26118734] | Population not in protocol - age 16-28 years (10% (n=2) under 18 years old) |
| Hynes, L., Byrne, M., Dinneen, S. F., McGuire, B. E., O’Donnell, M., Mc Sharry, J., Barriers and facilitators associated with attendance at hospital diabetes clinics among young adults (15-30 years) with type 1 diabetes mellitus: a systematic review, Pediatric Diabetes, 17, 509–518, 2016 [PubMed: 25080975] | Population of included studies not in protocol. Included studies checked for inclusion. |
| Jansen, R., Reid, M., Caregivers of adolescents with mental health issues using communication technology: a systematic review, JMIR mHealth and uHealth, 2020 [PMC free article: PMC7468639] [PubMed: 32663143] | Population of included studies not in protocol. Included studies checked for inclusion. |
| Kew, K. M., Cates, C. J., Home telemonitoring and remote feedback between clinic visits for asthma, Cochrane Database of Systematic Reviews, 2016 (8) (no pagination), 2016 [PMC free article: PMC7433298] [PubMed: 27486836] | No qualitative data extracted or analysed. Included studies checked for inclusion. |
| Kinchin, I., Tsey, K., Heyeres, M., Cadet-James, Y., Systematic review of youth mental health service integration research, Australian Journal of Primary Health, 22, 304–315, 2016 [PubMed: 27306596] | Phenomenon of interest of included studies not in protocol. Included studies checked for inclusion. |
| Kirk, S., Milnes, L., An exploration of how young people and parents use online support in the context of living with cystic fibrosis, Health Expectations, 19, 309–21, 2016 [PMC free article: PMC5055278] [PubMed: 25691209] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Kolvenbach, S., Fernandez de la Cruz, L., Mataix-Cols, D., Patel, N., Jassi, A., Perceived treatment barriers and experiences in the use of services for obsessive-compulsive disorder across different ethnic groups: a thematic analysis, Child and Adolescent Mental Health, 23, 99–106, 2018 [PubMed: 32677337] | Population not in protocol - parents of children aged 13-17 years old |
| Krishna, S., Boren, S. A., Balas, E. A., Healthcare via cell phones: A systematic review, Telemedicine and e-Health, 15, 231–240, 2009 [PubMed: 19382860] | No qualitative data extracted or analysed. Included studies checked for inclusion. |
| Lamb, J., Bower, P., Rogers, A., Dowrick, C., Gask, L., Access to mental health in primary care: a qualitative meta-synthesis of evidence from the experience of people from ‘hard to reach’ groups, Health: an Interdisciplinary Journal for the Social Study of Health, Illness & Medicine, 16, 76–104, 2012 [PubMed: 21486918] | Population of included studies not in protocol. Included studies checked for inclusion. |
| Law, H., Gee, B., Dehmahdi, N., Carney, R., Jackson, C., Wheeler, R., Carroll, B., Tully, S., Clarke, T., What does recovery mean to young people with mental health difficulties?-“It’s not this magical unspoken thing, it’s just recovery”, Journal of Mental Health, 2020 [PubMed: 32186236] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Leavey, Gerard, Rothi, Despina, Paul, Rini, Trust, autonomy and relationships: The help-seeking preferences of young people in secondary level schools in London (UK), Journal of Adolescence, 34, 685–693, 2011 [PubMed: 20952053] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Lester, H., Khan, N., Jones, P., Marshall, M., Fowler, D., Amos, T., Birchwood, M., Service users’ views of moving on from early intervention services for psychosis: A longitudinal qualitative study in primary care, British Journal of General Practice, 62, e183–e190, 2012 [PMC free article: PMC3289824] [PubMed: 22429435] | Population not in protocol - participants ≤18 years |
| Lion, K. C., Kieran, K., Desai, A., Hencz, P., Ebel, B. E., Adem, A., Forbes, S., Kraus, J., Gutman, C., Horn, I., Audio-Recorded Discharge Instructions for Limited English Proficient Parents: A Pilot Study, Joint Commission Journal on Quality and Patient Safety, 45, 98–107, 2019 [PMC free article: PMC6378142] [PubMed: 30126714] | Country: USA |
| Lucassen, M., Samra, R., Iacovides, I., Fleming, T., Shepherd, M., Stasiak, K., Wallace, L., How LGBT+ Young People Use the Internet in Relation to Their Mental Health and Envisage the Use of e-Therapy: Exploratory Study, JMIR Serious Games, 6, e11249, 2018 [PMC free article: PMC6320432] [PubMed: 30578194] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Ly, A., Tremblay, G. A., Beauchamp, S., What is the efficacy of specialised early intervention in mental health targeting simultaneously adolescents and young adults?” An HTA, International Journal of Technology Assessment in Health Care, 35, 134–140, 2019 [PubMed: 31017562] | Phenomenon of interest of included studies not in protocol. Included studies checked for inclusion. |
| MacDonald, K., Fainman-Adelman, N., Anderson, K. K., Iyer, S. N., Pathways to mental health services for young people: a systematic review, Social psychiatry and psychiatric epidemiology, 53, 1005–1038, 2018 [PMC free article: PMC6182505] [PubMed: 30136192] | Phenomenon of interest of included studies not in protocol. Included studies checked for inclusion. |
| Manuel, J. I., Munson, M. R., Dino, M., Villodas, M. L., Barba, A., Panzer, P. G., Aging out or continuing on? Exploring strategies to prepare marginalized youth for a transition to recovery in adulthood, Psychiatric rehabilitation journal, 41, 258–265, 2018 [PubMed: 30507240] | Population not in protocol - aged 18-75 years |
| Markkula, N., Cabieses, B., Lehti, V., Uphoff, E., Astorga, S., Stutzin, F., Use of health services among international migrant children - a systematic review, Global Health, 14, 52, 2018 [PMC free article: PMC5956827] [PubMed: 29769091] | No qualitative data extracted or analysed. Included studies checked for inclusion. |
| Masoumi, M., Shahhosseini, Z., Self-care challenges in adolescents: A comprehensive literature review, International Journal of Adolescent Medicine and Health, 31, 0152, 2019 [PubMed: 28599383] | Narrative review. Included studies checked for inclusion. |
| Mc Manus, V., Savage, E., Cultural perspectives of interventions for managing diabetes and asthma in children and adolescents from ethnic minority groups, Child: Care, Health and Development, 36, 612–622, 2010 [PubMed: 20533918] | No qualitative data extracted or analysed. Included studies checked for inclusion. |
| McCashin, Darragh, Coyle, David, O’Reilly, Gary, Bandura, Beck Beck Borenstein Boyatzis Braun Carr Cartwright Cavanagh Chapman Cheek Coyle Cromby de Graaf Ebert Finfgeld-Connett Fleming Fleming Gerhards Gilgun Grave Green Grist Hannes Harden Henson Herbert Kaltenthaler Khanna Knowles Kruger Law Lenhard Lovell Lucassen Lucassen Lucassen McCashin McLeod Merry Mohr Nieto Noyes O’Cathain O’Reilly O’Reilly Ouzzani Padgett Pennant Popay Poznanski Richards Salloum Scahill Schilling Scozzari Seidman Shepherd Shepherd Shuster Spek Sucala Terp Thomas Thomas Thomas Thornicroft Torgerson Torous Tunney Waller Wise, Qualitative synthesis of young people’s experiences with technology-assisted cognitive behavioral therapy: Systematic review, Journal of Medical Internet Research, 21, 2019 | Phenomenon of interest of included studies not in protocol. Included studies checked for inclusion. |
| McCormack, A., Norrish, S., Parker, L., Frampton, I., Consulting with young people about healthcare. Part 2: Experience of long-term health conditions, Pediatric Health, 4, 167–175, 2010 | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| McLauchlan, K., Ramlakhan, S., Irving, A., Why do parents present to the Paediatric Emergency Department with conditions suitable for management in less acute settings? A Qualitative Study, European journal of emergency medicine : official journal of the European Society for Emergency Medicine., 20, 2019 [PubMed: 31116119] | Population not in protocol - parental views on access, not a suitable proxy |
| McMaster, C., Gow, M., Cohen, J., Neal, R., Alexander, S., Baur, L., Patient and parent satisfaction with hospital-based paediatric weight management services and reasons for attrition: a mixed methods systematic review, Obesity Research and Clinical Practice, 13 (3), 311, 2019 | Conference abstract |
| Mimmo, L., Harrison, R., Taking time to care: Meta narrative review of the experience of parents with a child with intellectual disability in hospital, Journal of Intellectual Disability Research, 63, 812, 2019 | Systematic review. References checked for possible included studies - none were identified. |
| Naert, Jan, Roose, Rudi, Rapp, Richard C., Vanderplasschen, Wouter, Continuity of care in youth services: A systematic review, Children and Youth Services Review, 75, 116–126, 2017 | Study design of included studies not in protocol. Included studies checked for inclusion. |
| Narayan, O., Davies, S., Bakewell, K., Lenney, W., Gilchrist, F., Review of personal hand held record for cystic fibrosis children, Journal of Cystic Fibrosis, 2), S105, 2014 | Poster abstract |
| Neill, S. J., Coyne, I., Felt or enacted criticism: Impact on parents’ interactions with health care in differing contexts and communities, Archives of disease in childhood, 1), A181, 2014 | Conference poster |
| Neill, S. J., Jones, C. H., Lakhanpaul, M., Roland, D. T., Thompson, M. J., Parents’ help-seeking behaviours during acute childhood illness at home: A contribution to explanatory theory, Journal of child health care : for professionals working with children in the hospital and community, 20, 77–86, 2016 [PubMed: 25296933] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Neill, S. J., Social influences on parents’ health service use when their child is sick: Barriers to timely treatment?, Archives of disease in childhood, 3), A11–A12, 2015 | Conference abstract |
| Nelson, P. A., Kirk, S. A., Parents’ perspectives of cleft lip and/or palate services: A qualitative interview, Cleft Palate-Craniofacial Journal, 50, 275–285, 2013 [PubMed: 22849641] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Newby, K. V., Brown, K. E., Bayley, J., Kehal, I., Caley, M., Danahay, A., Hunt, J., Critchley, G., Development of an Intervention to Increase Sexual Health Service Uptake by Young People, Health promotion practice, 18, 391–399, 2017 [PubMed: 28388858] | Description of intervention development. No qualitative data analysed. |
| Nightingale, R., Hall, A., Gelder, C., Friedl, S., Brennan, E., Swallow, V., Desirable Components for a Customized, Home-Based, Digital Care-Management App for Children and Young People With Long-Term, Chronic Conditions: A Qualitative Exploration, Journal of medical Internet research, 19, e235, 2017 [PMC free article: PMC5516103] [PubMed: 28676470] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Noyes, Jane, Brenner, Maria, Fox, Patricia, Guerin, Ashleigh, Reconceptualizing children’s complex discharge with health systems theory: novel integrative review with embedded expert consultation and theory development, Journal of advanced nursing, 70, 975–96, 2014 [PubMed: 24164460] | Population of included studies not in protocol. Included studies checked for inclusion. |
| Nuti, A., Pryce, R., Assessing service satisfaction levels of adolescents with diabetes in out-patient clinic setting: A patient response outcome measure, Hormone Research in Paediatrics, 1), 291, 2013 | Poster abstract |
| Ochieng, B. M., Black African migrants: the barriers with accessing and utilizing health promotion services in the UK, European Journal of Public Health, 23, 265–269, 2013 [PubMed: 22683768] | Population not in protocol - ≤18 years old |
| O’Reilly, M., Vostanis, P., Taylor, H., Day, C., Street, C., Wolpert, M., Service user perspectives of multiagency working: A qualitative study with children with educational and mental health difficulties and their parents, Child and Adolescent Mental Health, 18, 202–209, 2013 [PubMed: 32847304] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Oxley, R., Parents’ experiences of their child’s admission to paediatric intensive care, Nursing Children and Young People, 27, 16–21, 2015 [PubMed: 25959486] | Population not in protocol - parents experiences and ages of children not reported. |
| Page, C. J., Dunkley, L., Edgerton, J., Hawley, D., Tattersall, R. S., Don’t lose your HEADSS in the adolescent clinic: An evaluation of how an adolescent rheumatology service counsels young people’s issues, Rheumatology (United Kingdom), 3), iii6, 2014 | Poster abstract |
| Page, C. J., Using headss in the adolescent clinic: An evaluation of how an adolescent rheumatology service counsels young people’s issues with patients, Rheumatology (United Kingdom), 1), i170, 2014 | Conference abstract |
| Parker, R., A small-scale study investigating staff and student perceptions of the barriers to a preventative approach for adolescent self-harm in secondary schools in Wales-a grounded theory model of stigma, Public Health, 159, 8–13, 2018 [PubMed: 29679862] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Petrie, K., McArdle, A., Cookson, J., Powell, E., Poblete, X., ‘Let us speak’-children’s opinions of doctors, Archives of Disease in Childhood, 102 (Supplement 1), A200–A201, 2017 | Conference abstract |
| Planey, Arrianna M., Smith, Sharde McNeil, Moore, Stephanie, Walker, Taylor D., Barriers and facilitators to mental health help-seeking among African American youth and their families: A systematic review study, Children and Youth Services Review, 101, 190–200, 2019 | Country not in protocol - USA |
| Pretorius, C., Chambers, D., Coyle, D., Young People’s Online Help-Seeking and Mental Health Difficulties: Systematic Narrative Review, Journal of Medical Internet Research, 21, e13873, 2019 [PMC free article: PMC6891826] [PubMed: 31742562] | No qualitative data extracted or analysed. Included studies checked for inclusion. |
| Price, C. S., Corbett, S., Lewis-Barned, N., Morgan, J., Oliver, L. E., Dovey-Pearce, G., Implementing a transition pathway in diabetes: a qualitative study of the experiences and suggestions of young people with diabetes, Child: care, health and development, 37, 852–860, 2011 [PubMed: 22007985] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Read, N., Lim, E., Tarzi, M. D., Hildick-Smith, P., Burns, S., Fidler, K. J., Paediatric hereditary angioedema: A survey of UK service provision and patient experience, Clinical and Experimental Immunology, 178, 483–488, 2014 [PMC free article: PMC4238875] [PubMed: 25113655] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Reardon, T., Harvey, K., Young, B., O’Brien, D., Creswell, C., Barriers and facilitators to parents seeking and accessing professional support for anxiety disorders in children: qualitative interview study, European Child and Adolescent Psychiatry, 27, 1023–1031, 2018 [PMC free article: PMC6060962] [PubMed: 29372331] | Population not in protocol - parents of children aged 7-11 years |
| Richardson, C., Paslakis, G., Men’s experiences of eating disorder treatment: A qualitative systematic review of men-only studies, Journal of psychiatric and mental health nursing, 2020 [PubMed: 32608115] | Population of included studies not in protocol. Included studies checked for inclusion. |
| Robert, Marie, Leblanc, Line, Boyer, Thierry, When satisfaction is not directly related to the support services received: Understanding parents’ varied experiences with specialised services for children with developmental disabilities, British Journal of Learning Disabilities, 43, 168–177, 2015 | Country: Canada |
| Rucci, P., Latour, J., Zanello, E., Calugi, S., Vandini, S., Faldella, G., Fantini, M. P., Measuring parents’ perspective on continuity of care in children with special health care needs, International Journal of Integrated Care [Electronic Resource], 15, e046, 2015 [PMC free article: PMC4843181] [PubMed: 27118963] | Country: Italy |
| Ryan, Siobhan M., Jorm, Anthony F., Toumbourou, John W., Lubman, Dan I., Parent and family factors associated with service use by young people with mental health problems: A systematic review, Early Intervention in Psychiatry, 9, 433–446, 2015 [PubMed: 25762206] | Study design not in protocol - quantitative data only |
| Sayal, Kapil, Mills, Jonathan, White, Kate, Merrell, Christine, Tymms, Peter, Predictors of and barriers to service use for children at risk of ADHD: Longitudinal study, European child & adolescent psychiatry, 24, 545–552, 2015 [PubMed: 25201055] | Study design not in protocol - quantitative data only |
| Schuller L Fau - Thaker, Kelly, Thaker, K., Community, Pract, Instant messaging: The way to improve access for young people to their school nurse [PubMed: 26837151] | Narrative description of a study. No information presented on data collection (beyond school aged children in Doncaster) or data analysis. |
| Settipani, C. A., Hawke, L. D., Cleverley, K., Chaim, G., Cheung, A., Mehra, K., Rice, M., Szatmari, P., Henderson, J., Key attributes of integrated community-based youth service hubs for mental health: A scoping review, International Journal of Mental Health Systems, 13, 52, 2019 [PMC free article: PMC6651922] [PubMed: 31367230] | Scoping review. Included studies checked for inclusion. |
| Sharkey, S., Lloyd, C., Tomlinson, R., Thomas, E., Martin, A., Logan, S., Morris, C., Communicating with disabled children when inpatients: barriers and facilitators identified by parents and professionals in a qualitative study, Health expectations : an international journal of public participation in health care and health policy, 19, 738–750, 2016 [PMC free article: PMC5055242] [PubMed: 25156078] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Shilling, V., Edwards, V., Rogers, M., Morris, C., The experience of disabled children as inpatients: a structured review and synthesis of qualitative studies reporting the views of children, parents and professionals, Child: care, health and development, 38, 778–88, 2012 [PubMed: 22372968] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Simons, D., Pearson, N., Dittu, A., Why are vulnerable children not brought to their dental appointments?, British dental journal, 219, 61–65, 2015 [PubMed: 26205930] | Study design not in protocol - no qualitative analysis |
| Smith, Kathryn A., Gehricke, Jean- G., Iadarola, Suzannah, Wolfe, Audrey, Kuhlthau, Karen A., Disparities in Service Use Among Children With Autism: A Systematic Review, Pediatrics, 145, S35–S46, 2020 [PubMed: 32238530] | Phenomenon of interest of included studies not in protocol. Included studies checked for inclusion. |
| Spencer, A. E., Platt, R. E., Bettencourt, A. F., Serhal, E., Burkey, M. D., Sikov, J., Vidal, C., Stratton, J., Polk, S., Jain, S., Wissow, L., Implementation of Off-Site Integrated Care for Children: A Scoping Review, Harvard Review of Psychiatry, 27, 342–353, 2019 [PMC free article: PMC7374937] [PubMed: 31714465] | Scoping review. Included studies checked for inclusion. |
| Spencer, G., Smith, M., Thompson, J., Fairbrother, H., Hoare, K., Fouche, C., Curtis, P., Health experiences of children and young people who migrate - Opportunities for health education, Health education journal, 78, 96–107, 2019 | Narrative review. Included studies checked for inclusion. |
| Stafford, V., Hutchby, I., Karim, K., O’Reilly, M., “Why are you here?” Seeking children’s accounts of their presentation to Child and Adolescent Mental Health Service (CAMHS), Clinical child psychology and psychiatry, 21, 3–18, 2016 [PubMed: 25062687] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Starkman, Harold, Fisher, Kathleen, Pilek, Nicole L., Lopez-Henriquez, Gloria, Lynch, Laura, Bilkins-Morgis, Briana L., Listening to adolescents with uncontrolled diabetes, their parents and medical team, Families, systems & health : the journal of collaborative family healthcare, 37, 30–37, 2019 [PubMed: 30920261] | Country: USA |
| Struthers, Ashley, Charette, Catherine, Bapuji, Sunita Bayyavarapu, Winters, Shannon, Ye, Xibiao, Metge, Colleen, Kreindler, Sara, Raynard, Melissa, Lemaire, Jacqueline, Synyshyn, Margaret, Sutherland, Karen, The acceptability of E-mental health services for children, adolescents, and young adults: A systematic search and review, Canadian Journal of Community Mental Health, 34, 1–21, 2015 | This systematic review included mainly quantitative studies. Qualitative studies were checked for inclusion, but these were not relevant for inclusion |
| Sunderland, E., Wood, K., Barwick, S., What do looked after young people think about the specialist health services they use?, Archives of disease in childhood, 3), A184, 2015 | Conference abstract |
| Svirydzenka, N., Ronzoni, P., Dogra, N., Meaning and barriers to quality care service provision in Child and Adolescent Mental Health Services: Qualitative study of stakeholder perspectives, BMC health services research, 17, 151, 2017 [PMC free article: PMC5319051] [PubMed: 28219392] | Phenomenon of interest not in protocol – themes relating to healthcare access but unable to identify which themes used data from <18 years |
| Taylor, S., Haase-Casanovas, S., Weaver, T., Kidd, J., Garralda, E. M., Child involvement in the paediatric consultation: a qualitative study of children and carers’ views, Child: care, health and development, 36, 678–685, 2010 [PubMed: 20337640] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Turnbull, J., Pope, C., Martin, D., Lattimer, V., Do telephones overcome geographical barriers to general practice out-of-hours services? Mixed-methods study of parents with young children, Journal of Health Services & Research Policy, 15, 21–7, 2010 [PubMed: 19843639] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Vogel, J. A., Rising, K. L., Jones, J., Bowden, M. L., Ginde, A. A., Havranek, E. P., Reasons Patients Choose the Emergency Department over Primary Care: a Qualitative Metasynthesis, Journal of General Internal Medicine, 34, 2610–2619, 2019 [PMC free article: PMC6848423] [PubMed: 31428988] | Population not in protocol - Adult population only |
| Waibel, Sina, Henao, Diana, Aller, Marta-Beatriz, Vargas, Ingrid, Vazquez, Maria-Luisa, What do we know about patients’ perceptions of continuity of care? A meta-synthesis of qualitative studies, International Journal for Quality in Health Care, 24, 39–48, 2012 [PubMed: 22146566] | Population of included studies not in protocol. Included studies checked for inclusion. |
| Waite-Jones, J. M., Majeed-Ariss, R., Smith, J., Stones, S. R., Van Rooyen, V., Swallow, V., Young People’s, Parents’, and Professionals’ Views on Required Components of Mobile Apps to Support Self-Management of Juvenile Arthritis: Qualitative Study, JMIR MHealth and UHealth, 6, e25, 2018 [PMC free article: PMC5797289] [PubMed: 29351898] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Waite-Jones, J., Swallow, V., Smith, J., Stones, S., Majeed-Ariss, R., Van Rooyen, V., Developing a mobile-app to aid young people’s self-management of chronic rheumatic disease: A qualitative study, Rheumatology (United Kingdom), 56 (Supplement 6), vi8, 2017 | Poster presentation |
| Wales, Jackie, Brewin, Nicola, Raghavan, Raghu, Arcelus, Jon, Exploring barriers to South Asian help-seeking for eating disorders, Mental Health Review Journal, 22, 40–50, 2017 | Population not in protocol - participants ≥18 years |
| Walsh, J., Scaife, V., Notley, C., Dodsworth, J., Schofield, G., Perception of need and barriers to access: The mental health needs of young people attending a Youth Offending Team in the UK, Health and Social Care in the Community, 19, 420–428, 2011 [PubMed: 21366758] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Watts, R., Zhou, H., Shields, L., Taylor, M., Munns, A., Ngune, I., Family-centered care for hospitalized children aged 0-12 years: A systematic review of qualitative studies, JBI Database of Systematic Reviews and Implementation Reports, 12, 204–283, 2014 [PubMed: 27820513] | Phenomenon of interest of included studies not in protocol. Included studies checked for inclusion. |
| Watts, Robin, Zhou, Huaqiong, Shields, Linda, Taylor, Marjory, Munns, Ailsa, Ngune, Irene, Family-centered care for hospitalized children aged 0-12 years: a systematic review of qualitative studies, JBI Evidence Synthesis, 12, 2014 [PubMed: 27820513] | Duplicate paper |
| Webb, C. M., Collin, S. M., Deave, T., Haig-Ferguson, A., Spatz, A., Crawley, E., What stops children with a chronic illness accessing health care: a mixed methods study in children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), BMC health services research, 11, 308, 2011 [PMC free article: PMC3228771] [PubMed: 22078101] | Population not in protocol - interviews conducted with parents of children >5 years (mean age 11.9 (4.3)) |
| Whale, K., Cramer, H., Wright, A., Sanders, C., Joinson, C., ‘What does that mean?’: A qualitative exploration of the primary and secondary clinical care experiences of young people with continence problems in the UK, BMJ open, 7 (10) (no pagination), 2017 [PMC free article: PMC5652505] [PubMed: 29042374] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
| Whittle, N., Macdonald, W., Bailey, S., A Study of Young Offenders’ Perceptions of Health and Health Care Services in Custody and in the Community, Journal of Correctional Health Care, 02, 02, 2012 [PubMed: 22553282] | Phenomenon of interest not in protocol - no themes relating to continuity of healthcare |
Economic studies
No economic evidence was identified for this review. See supplementary material 6 for details.
Appendix L. Research recommendations
Research recommendations for review question: What factors promote, or present barriers to, continuity of care for babies, children and young people?
No research recommendations were made for this review question.
Appendix M. Evidence from reference groups and focus groups
Appendix N. Evidence from national surveys
Final
Evidence reviews underpinning recommendations 1.10.12 to 1.10.17 in the NICE guideline
These evidence reviews were developed by the National Guideline Alliance which is a part of the Royal College of Obstetricians and Gynaecologists
Disclaimer: The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or service users. The recommendations in this guideline are not mandatory and the guideline does not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.
Local commissioners and/or providers have a responsibility to enable the guideline to be applied when individual health professionals and their patients or service users wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with compliance with those duties.
NICE guidelines cover health and care in England. Decisions on how they apply in other UK countries are made by ministers in the Welsh Government, Scottish Government, and Northern Ireland Executive. All NICE guidance is subject to regular review and may be updated or withdrawn.
- Supplement 1: Glossary and abbreviations (PDF)
- Supplement 2: Methods (PDF)
- Supplement 4: Evidence from reference and focus groups (PDF)
- Supplement 4a: Reference and focus groups evidence (PDF)
- Supplement 4b: Children and young people's opinions and experiences of healthcare (PDF)
- Supplement 5: Grey literature review of national surveys (PDF)
- Supplement 5a: Grey literature mapping to questions (PDF)
- Supplement 6: Economic study selection (PDF)
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- Review Accessing healthcare: Babies, children and young people’s experience of healthcare: Evidence review O[ 2021]Review Accessing healthcare: Babies, children and young people’s experience of healthcare: Evidence review ONational Guideline Alliance (UK). 2021 Aug
- Review Evidence Brief: The Quality of Care Provided by Advanced Practice Nurses[ 2014]Review Evidence Brief: The Quality of Care Provided by Advanced Practice NursesMcCleery E, Christensen V, Peterson K, Humphrey L, Helfand M. 2014 Sep
- Continuity of careContinuity of care
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