SCIE/NICE recommendations on looked after children: Promoting the quality of life of looked-after children and young people

Recommendations for research

There is some high-quality observational and qualitative UK research that describes, monitors and reports the experiences and views of looked-after children and young people, their families, and professional carers (for example, foster or residential carers). However, it is evident from the effectiveness reviews undertaken for this guidance that there is a lack of robust, adequately controlled, studies completed to a high standard. Consequently, the UK evidence base does not serve the needs of looked-after children and young people as well as it might.

The evidence reviews commissioned early in the development of this guidance aimed to identify research about the effectiveness and cost effectiveness of interventions and services. Few UK controlled trials were identified that were sufficiently robust or transparent to answer basic questions such as what interventions work best, how, for whom, and over what period, and what is good value for money.

Budgetary constraints are always a key factor in decisions about service provision; it is therefore of considerable concern that cost effectiveness is rarely a planned consideration in the design of studies about looked-after children and young people. The drawback of this lack of cost-effectiveness data is that decisions about services may be based on cost alone. For example, lowest cost option even if there is no evidence of efficacy.

All looked-after children and young people and their families need to feel confident that the interventions and services they receive (or are encouraged to use) are based on a robust understanding of the multiple factors that affect healthy development. A sound evidence base of well-conducted studies is a pre-requisite for this understanding.

To begin to address the lack of effectiveness evidence, a re-assessment of how research is quality assured and controlled is urgently required. The aim of these recommendations is to encourage the development of the evidence base. This would be done most effectively through the research councils and funding bodies. A national framework of quality control and assurance (including a national register of research being undertaken with looked-after children and young people), informed by the highest standards of methodological expertise should be considered to ensure services and interventions sustain or improve quality of life 31 for looked-after children and young people.

National, multidisciplinary collaboration is required to achieve full and robust appraisal of the effectiveness and cost effectiveness of interventions to promote, maintain or prevent deterioration of quality of life across the life course. If there is good understanding among all professionals and frontline practitioners of the value of research to this group of children and young people, and studies adhere to approved research protocols (including for access to confidential information), participation in research will become familiar, routine practice, instead of a rare activity.

The Programme Development Group (PDG) has made the following three recommendations on how research should be designed and conducted to generate the data needed to improve services for looked-after children and young people. The list of research questions after the recommendations indicates the themes that the PDG has identified as priorities for research.

Recommendation 1 Research methods

Who should take action?

• Research councils
• national and local research commissioners and funders
• researchers.

• What action should they take? Open

  Develop robust methods for evaluating services for looked-after children and young people by working with multidisciplinary research specialists in health, social care, and economic evaluation.

  Such work should:

  • Explore barriers to conducting controlled studies (for example, concerns about random allocation of looked-after children and young people) and making recommendations to reduce these obstacles. It should produce clear guidance about when it would be considered unethical, unnecessary, inappropriate, impossible or inadequate to randomly allocate participants (Black 1996).
  • Develop standardised, validated and reliable measures and robust tools to evaluate quality of life outcomes for use with all looked-after children and young-people from birth to 25 years, regardless of where they live (also see research question 4). Consider compatibility with health-related quality of life measures and the quality-adjusted life year.
  • Ensure measures and methods include test–retest capability over the short, medium and long term (32) and across the life course. Also offer robust parallel versions for completion by others including peers (that is, versions for proxy respondents), which can be translated into other languages with little or no loss of fidelity, and are designed to capture the impact of services and interventions on the quality of life of looked-after children and young people.
  • Indicate appropriate process and outcome measures to assess intended and unintended, short-, medium- and long-term impacts (positive and negative), enhance understanding of what outcomes are acceptable and valued by participants, and take into account the impact on particular groups (outlined in research question 4 below).
  • Give guidance on how to routinely capture robust outcome measures and aspects of wellbeing, taking account of developmental changes across the life course, and the abilities and needs of different participants
  • Explore how quantitative and qualitative methods can be combined in research to reflect the differential impact of the context, process, content and experience of those involved, as well as the impact (including the costs and health effects) of the intervention under investigation (including identification of barriers and facilitators).
  • Explore whether non-randomised (observational and quasi-experimental) study designs can provide adequate evidence to evaluate services, and how to reduce sampling bias and improve the usefulness of these designs.

Recommendation 2 Reporting evaluations

Who should take action?

• Research councils
• national and local research commissioners and funders
• researchers and journal editors.

• What action should they take? Open

  Ensure all research reports (including qualitative research or service evaluation reports) are transparent and replicable (where appropriate) by including as standard:

  • the research question or set of questions the study or service evaluation is designed to answer a description and rationale of the research methods used a methods sections that clearly and adequately describes procedures used such as:
  • methods of data analysis (for example, statistical models and predictive value, or interpretative frameworks used to interpret interview text)
  • characteristics of samples including biases, analysis of drop outs and numbers of participants followed up, and appropriate statistical adjustment
  • measures used and their reliability (including test–retest), and internal and external validity
  • a description of what was delivered, over what period, to whom and in what setting
  • a report of any differences in access to participants, recruitment and (where relevant data are available) uptake, according to socioeconomic and cultural variables including age, abilities, gender, ethnicity or any other relevant differences, and a thorough analysis of the limitations of the study design or evaluation methods used and their impact on the conclusions.

Recommendation 3 Economic evaluations

Who should take action?

• Research councils
• specialists in health and social care economic research
• national and local research commissioners and funders and research workers.

• What action should they take? Open

  Develop guidelines for economic evaluation, to encourage consistency across studies and support the implementation of methods for evaluating services for looked-after children and young people. This may include endorsing a single preference-based measure of outcome, which should inform the development of a measure for children and young people’s social care similar to and compatible with the quality-adjusted life year (QALY). Cost data should be collected routinely.

Research questions

These questions cover themes that the PDG has identified as priorities for research.

1. What is the relative effectiveness and cost effectiveness of the different types of placement (that is, local authority carers, private fostering agency carers, residential homes and care provided by family and friends) on the quality of life (short- or long-term outcomes) for children and young people? Outcomes should include effects on attachment, self-esteem and resilience and access to services and support.
2. How effective and cost effective are interventions for looked-after children and young people that aim to enhance quality of life, for example by: improving access to specialist or universal health and mental health services (for example, by enabling early access, or providing more flexible mental health services) improving social and educational opportunities providing support for those who are leaving care and moving into adulthood?
3. How effective and cost effective are entry-level and any additional training and support for approved carers, professionals (including teachers), frontline practitioners or approved volunteers in sustaining and improving quality of life for looked-after children and young people?
4. What interventions are effective and cost effective for particular groups of looked-after children and young people including those:
   • from black and minority ethnic communities
   • who are lesbian, gay, bisexual or transgender
   • who are unaccompanied asylum seekers with looked-after status
   • from travelling communities
   • who are babies and very young children under the age of 5
   • who are part of sibling groups, or
   • who have complex needs such as physical or learning disabilities, or behavioural problems.
5. Do experiences before entering care and during care (for example, stability in care) affect the success of any intervention and what is the relative impact over time?

32.

The appropriate time frame for retesting will depend on the variable under study.