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Original article
Developmentally appropriate healthcare for young people: a scoping study
  1. Albert Farre1,
  2. Victoria Wood2,
  3. Tim Rapley2,
  4. Jeremy R Parr3,
  5. Debbie Reape4,
  6. Janet E McDonagh1
  1. 1School of Immunity and Infection, University of Birmingham, Birmingham, UK
  2. 2Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK
  3. 3Institute of Neuroscience, Newcastle University, Newcastle upon Tyne, UK
  4. 4Northumbria Healthcare NHS Foundation Trust, Tyne and Wear, UK
  1. Correspondence to Dr Albert Farre, Institute of Child Health, University of Birmingham, Birmingham Children's Hospital NHS Foundation Trust, Steelhouse Lane, Birmingham B4 6NH, UK; a.farre{at}bham.ac.uk

Abstract

Background There is increasing recognition of the importance of providing quality healthcare to meet the biopsychosocial needs of young people. ‘Developmentally appropriate healthcare’ (DAH) for young people is one term used to explain what these services consist of. However, this term remains ill defined.

Aims (i) To analyse the use of the term DAH in the scientific literature and (ii) to identify and explore the range of meanings attributed to the term in relation to young people.

Methods A scoping review was conducted to map the presence of the term DAH in the literature. To analyse the use and meanings attributed to the DAH terminology, data underwent qualitative content analysis using a summative approach.

Results 62 papers were selected and subjected to content analysis. An explicit definition of DAH was provided in only 1 of the 85 uses of the term DAH within the data set and in none of the 58 uses of the prefix ‘developmentally appropriate’. A link between the use of the term DAH and the domains of adolescent medicine, young people, chronic conditions and transitional care was identified; as were the core ideas underpinning the use of DAH.

Conclusions There is a need for consistency in the use of the term DAH for young people, the related stage-of-life terminology and age range criteria. Consensus is now needed as to the content and range of a formal conceptual and operational definition.

Keywords
  • Adolescent Development
  • Adolescent Health Services
  • Adolescents
  • Young Adults

https://doi.org/10.1136/archdischild-2014-306749

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    Keywords

    What is already known on this topic

    • In recent years, research has increasingly highlighted the need for healthcare for young people aged 10–24 years to be different from that received by children and adults.

    • Developmentally appropriate healthcare is considered a key principle underpinning the practice of young-person-centred healthcare, that is, responsive to the evolving developmental needs of young people aged 10–24 years.

    • The provision of consistent, coordinated healthcare over adolescence and young adulthood has been reported as a key issue impacting upon young people's biomedical outcomes as well as upon their engagement with healthcare services.

    What this study adds

    • Despite its increasing relevance, the term developmentally appropriate healthcare (DAH) remains ill defined.

    • Consensus about critical aspects of DAH is required (such as the related stage-of-life terminology and age range cut-off points); a definition of DAH is needed.

    • This consensus would lead to the production of a stronger body of evidence about DAH services, the development of quality criteria and allow future evaluation.

    Introduction

    Provision of effective healthcare services during adolescence and young adulthood requires acknowledgement of the breadth and intensity of biopsychosocial development during this period, and identification of the needs that set this population apart from children and adults.1

    The need for healthcare for young people (defined by the WHO as age 10–24 years)2 to be different from that received by children and adults has received much attention in recent years.1 ,3–5 The provision of consistent, coordinated healthcare over this important period of development is a key issue impacting upon young people's biomedical outcomes;6 ,7 their adherence to therapy;8 satisfaction with healthcare provision;9 engagement with healthcare services;10 self-care practices;11 and their achievement as self-reliant, independent and productive members of society.12

    However, at present, healthcare services that specifically address the needs of young people are not universally available even in countries with well-developed, funded healthcare provision.4

    ‘Developmentally appropriate healthcare’ (DAH) for young people is one term used to explain what these specific services consist of. While acknowledging the importance and growing awareness of youth-friendly health services in both primary and specialist care,5 the term DAH is of particular interest as it focuses on development (rather than chronological age) and has the potential to convey the dynamic nature of adolescent and young adult development as a defining characteristic of health services. However, the term DAH remains ill defined and, as such, its conceptual meaning and operational formulation are currently too vague to enable the production of a well-defined recognisable body of evidence.

    This study was conceived as a first step towards a formal accepted definition of DAH, in addition to being an enabler for further research with the potential to explore how the term DAH overlaps and differs from other terms currently in use to refer to the provision of healthcare for young people (such as ‘age-appropriate’, ‘adolescent-friendly’ or ‘youth-friendly’). In so doing, the study will inform the design, implementation and evaluation of consistent and comparable DAH services for young people.

    The aims of this study are, therefore, to (i) analyse the use of the term DAH in the scientific literature and (ii) identify and explore the range of meanings attributed to the term in relation to young people.

    Data and methods

    A scoping review13 ,14 was conducted to map the presence of the term DAH in the literature. The relevance of this method to this particular study lies in the lack of an explicit conceptual definition of DAH in the literature, which in turn made other forms of literature review or research synthesis problematic.

    Since we intended to map a multiword concept that is not determined a priori by age group and that focuses on the term ‘development’ rather than age-related terms, our search strategy combined the following 8 phrase searching elements in 4 Boolean queries: ‘developmentally appropriate healthcare’, ‘healthcare developmentally appropriate’, ‘developmentally appropriate health care’, ‘health care developmentally appropriate’, ‘developmentally appropriate health’, ‘health developmentally appropriate’, ‘developmentally appropriate care’ and ‘care developmentally appropriate’. The search queries covered title, abstract, keywords and full-text search where available and were conducted across 7 bibliographic databases (PubMed, PsycARTICLES, Social Policy and Practice, HMIC Health Management Information Consortium, Journals@Ovid, PsycINFO, Scopus) and Google Scholar. The searches were conducted in February 2013 and not restricted by publication date. The search terms were applied in English only; beyond that, language did not constitute an exclusion criterion. We hand-searched the literature and consulted domain experts to identify additional publications.

    The results of the searches were assessed for the presence of the term DAH. Conference abstracts and book chapters were not included. Studies were included if they used the term DAH in the articles (n=122) or used closely related variations of the term, such as ‘developmentally appropriate care’ and ‘developmentally appropriate transitional care’ (n=17). The articles (n=141) were refined by excluding duplicate entries (n=57) and excluding articles that focused on other areas, such as education or developmental psychology, and did not pertain to health or health services research (n=22). A total of 62 papers (table 1) were then subjected to analysis.

    View this table:
    Table 1

    Articles included in the study

    To explore the use and meanings attributed to the term DAH, the search results then underwent qualitative content analysis15 in two stages:

    First, articles were subjected to manifest content analysis16–18 to identify preliminary patterns in the data and contextualise the use of the term DAH. Articles were categorised by authors’ country of institutional affiliation, topic/area of research, health condition, age group and/or developmental stage and year of publication.

    Second, articles were subjected to latent content analysis16–18 to identify the core ideas attached to the term DAH in relation to young people, as well as the supporting empirical evidence when provided.

    The coding and analysis process employed NVivo 10 software and followed the principles of a summative approach to qualitative content analysis.15

    Results

    The context of use of the term DAH

    The results revealed the literature published between 1998 and 2013, with approximately half of the publications produced in the last five years (n=34, published between January 2008 and February 2013), by authors predominantly working in the USA (n=26), the UK (n=14) and Australia (n=13) (table 2).

    View this table:
    Table 2

    Distribution of the literature by year of publication and country of institutional affiliation of the authors

    The majority of papers (n=43) involved ‘young people’ aged between 10 and 24 years.19 Some (n=12) exclusively studied adolescents (between 10 and 19 years of age)2 and the others (n=31) people aged up to 25 years and/or drew on concepts such as ‘young people’ or ‘youth’.2 Only a small number (n=7) linked DAH exclusively to ‘adults’ or ‘young adults’ and fewer (n=4) to children under the age of 10 years (table 3).

    View this table:
    Table 3

    Distribution of the literature by age group and/or developmental stage to which the use of the concept was linked

    Regarding the research topic/area, the majority of papers (n=38) addressed the topic of transition from child to adult-centred healthcare (table 4). The remainder explored different aspects of adolescent development (n=9), specific conditions (n=9), healthcare provision (n=4) and chronic illness (n=2).

    View this table:
    Table 4

    Distribution of the literature by topic/area of research

    Table 5 shows the health condition to which the use of the term DAH was linked. The majority (n=51) were studies of chronic conditions, either focussing on specific chronic conditions (n=34) such as diabetes, congenital heart disease, juvenile idiopathic arthritis and cancer; or on generic categories (n=17) such as chronic illness, special healthcare needs, cognitive impairment and intellectual disabilities.

    View this table:
    Table 5

    Distribution of the literature by condition to which the use of the concept was linked

    The meanings of the term DAH

    The term DAH was referred to 85 times within the data set, in addition to the prefix ‘developmentally appropriate’ being referred to 58 times, with only one manuscript providing an explicit definition: ‘[DAH is] a set of clinical practices oriented to concomitantly achieving better developmental and health outcomes for young people’.20 Beyond this, content analysis identified other core ideas attached to the term and a wider range of definition that could be inferred from its use.

    DAH is considered a ‘key principle underpinning the practice of adolescent medicine’.20 To deliver DAH, ‘the key developmental tasks facing adolescents and young adults need to be taken into consideration’.12 DAH requires healthcare professionals to ‘have an appreciation for emerging adulthood’,12 to ‘maintain awareness of adolescent development in their interactions with young people and their parents’20 and to acknowledge that development occurs at a ‘physical, psychosocial and cognitive’ level8 ,20 ,21 including the assumption that ‘experimentation is part of ‘normal’ adolescent psychosocial development but becomes concerning when it evolves into risk-taking behaviour’.8

    Adolescent development entails another key aspect of the term DAH, which is its ‘comprehensiveness’.22–25 The provision of DAH involves taking into account ‘how their healthcare goals fit with their other life-goals’11 and ‘how their life circumstances and occupational choices influence their approach to self-management’,26 which includes their ‘need to receive developmentally appropriate health promotion and anticipatory guidance’27 as well as disease education and skills training.8 ,11 ,28 This will enable young people ‘to integrate their disease management into their overall life projects in order to achieve a high quality of life and be able to undertake active participation in society as a whole’.27

    Another key aspect within the concept of DAH is the idea of ‘continuity’,11 ,22 ,23 ,25 ,29 even ‘after the age of 18’.11 ,12 ,27 DAH is required ‘whether young people are still based within a paediatric service or whether they have transferred to an adult setting’28 and therefore involves developing a ‘young-person-friendly service, irrespective of setting’.30 DAH is an ongoing process, ‘patient-centred’8 ,20 ,22 ,23 ,25 and ‘responsive’8 ,12 ,22 ,23 ,25 ,27 to the young person's developmental stage rather than chronological age,21 ,29 ,31–33 as an arbitrary age point as a sole criterion ‘may disregard the complexity of adolescent development’.29 DAH implies delivery of care in a sound, uninterrupted manner21 ,22 ,28 ,30 ,34 regardless of the healthcare setting or the clinical team.

    Finally, provision of DAH involves ‘flexibility’12 ,21–23 ,25 in healthcare delivery for young people, either emphasising or creating it,12 in aspects such as to ‘make treatment decisions that meet their needs, and negotiate the advantages and disadvantages inherent in such decisions’.26 Flexibility is key to providing a healthcare service of a pace and intensity that can vary according to developmental needs,21 ,29 ,31–33 which in turn may vary according to individual differences or potential delays in the context of chronic illness.8 ,21

    Discussion

    Irrespective of age, DAH formulates healthcare by taking the patient's developmental stage as the starting point for appropriate provision.21 ,29 ,31–33 Professionals working with young people should therefore advocate such an approach. However, considering the wealth of existing adolescent health literature, it is surprising that the term was found in relatively few papers and only explicitly defined in one of them. There were also important aspects of adolescent development that were absent from the literature, for example, the changing role of the parent and the professional.

    Authors from established adolescent health programmes, whether clinical or research, may simply accept the term as so fundamental to their practice that it does not need to be defined or stated. However, adolescent developmental milestones may not always receive equivalent attention in paediatric training programmes as the classic lists of developmental milestones for younger children receive. In a survey of paediatric professionals, 22%, 29% and 33% of staff reported low/very low levels of knowledge, confidence and skill, respectively, in the area of biopsychosocial development during adolescence.35 Therefore, while there are still countries such as the UK where adolescent health/medicine is not a distinct discipline, there is a need for clarity and consensus of what DAH means in order to ensure that DAH is delivered to young people universally in the future.28

    A definition of DAH for young people will need to (i) acknowledge that development occurs and progresses at a physical, cognitive and psychosocial level in an interdependent manner; (ii) acknowledge the changing roles of parents and professionals during adolescent development; (iii) incorporate strategies to empower young people in terms of autonomy and promote their ability to take on responsibility for their own healthcare and (iv) facilitate the integration of their health management into their overall life projects and contexts.

    Furthermore, there are three key aspects that should be considered so as to contextualise such definition:

    First, the use of the term DAH is tied to adolescent health-related issues or adolescent medicine. Also, the literature mainly focused on the adolescent developmental stage (10–19 years), either exclusively or as incorporated into an age range up until 25 in keeping with the WHO definition of young people.2 In practice, this aspect is exemplified by the intrinsic nature of routine psychosocial screening, consideration of risk and protective factors and assurance of confidentiality in DAH for young people.35 In view of the neuroscience advances reporting that brain development continues into the third decade,36 the relevance of DAH in clinical settings where adolescents and young adults are seen—whether in primary care, paediatrics and adult medicine—is only likely to grow in importance and significance.

    Second, there is a close relationship between the term DAH and the concept of transition.28 Many of the papers focused on the topic of transition from child to adult-centred healthcare and the term DAH has been widely used as a defining feature of the concept of transition. However, in the light of the conceptualisation of DAH, transition to adult healthcare should be understood as intrinsic to the overall clinical implementation of DAH for young people.28 All young people, irrespective of health status, will (hopefully) make the transition from child to adult services. Transition should be considered within the broader arena of adolescent health and no longer distinctly separate37 nor solely about the event of transfer.38 Increasingly there is a call for adoption of a life-course approach to adolescent health.3 Rather than considering only the impact of change of service provider, we should consider how to address all the needs of young people at this stage of their life course,39 bearing in mind that health transition is just one of many transitions during adolescence (e.g., social, cultural and economic) and that each transition area may influence the other.

    Third, there is a link between the use of the term DAH and chronic conditions. Individuals with chronic conditions are at higher risk than their peers for unnecessary dependency, psychosocial delay, risk-taking behaviours and other developmental difficulties.28 ,40–42 Accordingly, the study identified a focus on a range of chronic conditions as well as a body of the literature that recognises and advocates the non-categorical approach to chronic conditions (table 5). However, it was surprising that there were not more papers identified addressing DAH in the context of learning disability (table 5). In such circumstances, careful consideration of both chronological age and developmental stage is imperative in the care of young people.43 ,44

    Next steps

    Beyond acceptance of a definition of DAH for young people, it will also be important to reach a consensus among professionals and researchers about at least three critical aspects of the DAH concept, regarding age ranges and developmental stages:

    1. The wide heterogeneous diversity in terminology. Consensus about this would mean greater clarity around research that is focused on transfer, transition and/or adolescent/young adult health, thereby providing such research with greater impetus and better focus than has been achieved to date.

    2. The wide diversity of age ranges. Age range diversity makes it difficult to aggregate and/or compare results across studies. The lack of age range specificity risks the loss of important adolescent-specific data, e.g., the 10-year-old to 14-year-old data of early adolescence when only 15+-year-old data are considered.4 ,38

    3. The boundaries of DAH for young people. Over half the literature discussed adult participants, whether it was as ‘young adults’, ‘young people’, ‘youth’ or ‘adults’. This poses the following question: When does DAH for young people end? Brain development is now known to continue into and beyond the mid-twenties36 ,45 and social developmental milestones such as living independently are being shifted further into the third decade. One could argue that developmental appropriateness in healthcare provision is as important for emerging adults (19–25 years) as it is for adolescents (10–19 years).8 ,12 ,27 This is reflected in the evidence to support calls for development of young adult clinics for young people with long-term conditions, rather than just limiting service development to the ‘transition clinic’ concept.6 ,7 ,46

    Therefore, beyond acceptance of a definition, it will also be important in the future to reach a consensus about the critical aspects of the concept. To address this and move the field forward, we are planning to undertake a Delphi study47–49 involving experts from the field in order to achieve formal consensus on the content and range of the definition of DAH for young people at both conceptual and operational levels.

    Conclusions

    This paper has identified a link between the use of the term ‘developmentally appropriate healthcare’ and the domains of adolescent medicine, young people with chronic conditions and the concept of transition. There is a need for consistency in the use of the term DAH for young people as well as in the related stage-of-life terminology and age range cut-off points.

    The next steps will be to establish consensus about the content and range of a formal conceptual and operational definition. This will facilitate the production of a stronger body of evidence for DAH services for young people and contribute to the further development of the practical implications and quality criteria for such services. In so doing, DAH for young people could potentially become a model quality measure for all healthcare across the lifespan, as all people of any age require DAH provided by staff with the appropriate expertise.

    Acknowledgments

    The authors would like to thank their fellow coapplicants of the TRANSITION Research Programme for their help and advice: Angela Bate, Allan Colver, Ann Le Couteur, Gail Dovey-Pearce, Helen McConachie, Mark Pearce, Luke Vale and Helen Wheatley.

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    Footnotes

    • Contributors Study design: JEM and AF. Scoping review and content analysis: AF. Second reviewer: VW. Supervision of study: JEM. Write-up of drafts: JEM and AF. Critical review of the manuscript: all authors.

    • Funding This study arose as part of the Transition Research Programme, which is independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research funding scheme (RP-PG-0610-10112). The views expressed in this article are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

    • Competing interests None.

    • Provenance and peer review Not commissioned; externally peer reviewed.