7.7.1. Relative value placed on the outcomes considered

The objective of this review was to discover what information and support interventions were effective or perceived as making a positive difference to families with infants or preschool children in whom concerns about growth had been raised. We looked for quantitative or qualitative evidence that addressed this topic. For the quantitative part of the review the Committee considered measurements of growth and health related quality of life to be critical outcomes for this review topic. Other outcomes, such as parent or carer satisfaction, adherence to information or support intervention; cognition or hospital admissions were also considered to be important.

In the qualitative review the Committee anticipated a number of themes, such as potential stigma attached to having a child with faltering growth, difficulties in the recognition of faltering growth, experience with healthcare professionals or perceptions about peer group support (direct or online). However, the Committee also acknowledged that there may be other themes that would come from the literature which would also be considered.

However, neither quantitative nor qualitative evidence was identified and the Committee based their recommendations on consensus informed by the experience and expertise of its members.

7.7.2. Consideration of clinical benefits and harms

The NICE patient experience guideline was considered as a starting point when drafting the recommendations. However, it was acknowledged that these should be extrapolated with caution, as the Patient Experience Guideline is directed to the patient experience of adults only.

There was an overall agreement that both content and method of information delivery should be predominantly reflected in the recommendations. It was acknowledged that good information provision was an important part of clinical practice and that is a particular part of care that parents value. The Committee also agreed that information is most helpful if individualised and tailored to the particular circumstances and cultural background of the parents and child (for instance taking account of the particular food choices that are made by the family). When sharing information, any potential difficulties in understanding or communication should be anticipated and taken into account. This may include, for example, cognitive or hearing impairment, or learning difficulties. Information shared in both written and verbal forms may be helpful.

It was recognised that excessively technical information or jargon can be a barrier to effective information provision.

The Committee agreed that the parents’ understanding about their child’s growth should be explored by health care professionals, to promote parent involvement in assessment and management. Additionally, health care professionals should ensure that families and carers are aware of where relevant, reliable information is available and how to access it.

The Committee acknowledged that parents or carers of a child with faltering growth are concerned about the child’s wellbeing and that there is an emotional impact that this has on them. Because of this, getting varying perspectives and explanations from different health care professionals can be distressing. Possible parental anxieties can also have an impact on healthcare professionals and possible training needs and support for them was also discussed. However, the Committee agreed that making specific recommendations addressing those needs of healthcare professionals was outside the remit of this guideline.

There may be occasions through the assessment and management pathway when parents and carers need to deal with uncertainty. For this reason, making sure that parents have the correct information and feel fully supported is vital to maintaining engagement.

7.7.3. Consideration of economic benefits and harms

Information provision rarely carries a large direct economic cost, especially in conditions like faltering growth where some information is already provided and the Committee are required only to improve the accuracy and quality of that information. The principal cost of information provision is the clinical time to explain the information (and possibly the printing costs of booklets / leaflets etc.). This clinical time will be the same whether the information is of a high or low quality, so there is no economic reason to ever prefer lower-quality information to higher-quality information.

Supporting interventions can be more expensive depending on what form the support takes, especially if it involves committing clinical time to children who are faltering but otherwise healthy (i.e. on the basis of parental desire for support alone). Owing to a lack of evidence about the benefits of such interventions and in recognition of the high opportunity cost of these supportive interventions the Committee could not make strong recommendations in this area.

Good information may have indirect economic benefits. If patients feel under-informed they may use healthcare services more often as they are unsure what is ‘normal’ in their condition and what they should worry about. The reverse of this is also true; if patients are not well informed about what is a potentially worrying development in their condition they may neglect to see a clinician until the condition has progressed. This is especially true in the case of faltering growth where the primary patient (the child) is usually unable to articulate the state of their own condition and parents and carers must make the decision for them on the basis of the information they have been provided. In cases where the information provided encourages seeking more treatment, it is understood that if this information is of a high quality then the treatment sought should be cost-effective, and so of a net benefit to the NHS.

As information provision carries a low or zero cost to the NHS, the Committee’s recommendations will not carry a high resource impact.

7.7.4. Quality of evidence

No study was identified to address the review question.

7.7.5. Other considerations

The Committee recognised the following areas as important for health professionals to discuss with parents and carers of children with faltering growth:

• Information on growth (and how to interpret a growth chart). The Committee agreed that health care professionals should inform parents and carers that monitoring growth may take time and that further tests may be required.
• Information on potential implications for future health, such as prognosis and timescale of faltering growth. Health care professionals should not be afraid of sharing this information; the Committee recognised that this topic may cause concern and anxiety in parents and carers, but should be tackled as soon as possible.
• Information on possible underlying causes of faltering growth.
• Information on available peer support, and where to access it.
• Information about how to tackle difficulties and concerns that parents and carers may be having.
• The Committee discussed that advice on mealtime management could be part of the information provided, based on assessment of current family practices.
• The Committee also talked about some available NHS online resources that could be useful to parents, for instance: The Eatwell Guide: http://www.nhs.uk/Livewell/Goodfood/Pages/the-eatwell-guide.aspx; Baby and toddler meal ideas: http://www.nhs.uk/Conditions/pregnancy-and-baby/Pages/childrens-meal-ideas.aspx; and Starting your baby on their first solid foods: https://www.nhs.uk/start4life/first-foods.

Equally, exploring the concerns and the parents’ understanding of the condition should be done prior to information sharing.

7.7.6. Key conclusions

Due to the lack of evidence, the recommendations are based on the experience and expertise of the Committee.

The Committee discussed that information and support provided to parents and carers and the preschool child (where possible) is central to good clinical practice. Information should be individualised to each person, taking into account their circumstances. This includes consideration of whether there are any issues that may hinder an individual understanding of information or where special support needs have to be addressed (such as learning disabilities, mental health needs or physical disabilities). The focus of the information should be on the current condition of the child, but also on prognosis and future health.

Why this is important

Having a child with faltering growth can be a distressing experience. Parents can feel blamed or unheard. Faltering growth happens when children are young so can have a long-term impact on the child-parent relationship. There are no studies that describe parental experiences or concerns and therefore there is a gap in the evidence. Research on this topic would help to improve understanding of the needs and concerns of parents who have children with faltering growth which will then enable healthcare professionals to better address them. Understanding the experiences, expectations and needs of parents should inform the design of effective intervention strategies that are tailored to the family.

Table 71

Research recommendation rationale.

Table 72

Research recommendation statements (characteristics of this qualitative study).