Theme 5: Presentations, adjudications and offers

The ways in which parents, children and young people present to health services is clearly important in gaining professional recognition of candidacy, and subsequent access to services. We organised our analysis around the following themes:

• Presentations.

• Adjudications.

• Technical and social / moral candidacy.

• Offers and uptake.

Presentations

The ability of parents to act as advocates for their child has important implications for treatment, and therefore for equity in the provision of services. Klasen and Goodman (2000) found that referrals to

specialists were linked more to parental persistence (as well as a perceived inability to cope) than to a systematic assessment of

symptoms; moreover, rapid referral was linked to parental persistence rather than the severity of child hyperactivity. The evidence also suggests that parents can have a particularly important role as advocates in relation to children with conditions which are difficult to

NCCSDO © 2005 193 diagnose or which are unpredictable in their symptomatology. Carter and colleagues (2002), in their study of parental assessment of pain in children with profound special needs, found that parents were

particularly able to pick up on symptoms, and on their child's pain cues, in a way which health professionals would find very difficult.

Whitehead and Gosling (2003) make a similar observation in relation to children with tuberous sclerosis: parents described having to make several visits to their doctor before being referred to a paediatrician.

Significant here is the fact that children are more likely to get

treatment if they have confident (or perhaps desperate) parents, with worrying implications for those who are less able to act as advocate in this assertive way.

However, our analysis suggested that discordance between

professional and parent / child perspectives on candidacy is common (Jacobson et al., 2001; Kai, 1996b; Klasen and Goodman, 2000;

Robinshaw and Evans, 2001; Whitehead and Gosling, 2003; Carter et al., 2002; Churchill et al., 2000; Coleman and Finlay, 1997; Cornford et al., 1993; Bryce and Gordon, 2000; Dixon-Woods et al., 2001;

Donovan et al., 1997). The issues can be separated into those principally about the different perspectives adopted by health professionals and families about whether a child was an authentic candidate for medical attention and intervention, judged by a clinical canon, and those (less commonly) where a child is judged to be in need of clinical intervention but this is resisted by families.

Studies which looked at discordance between health professional and parental perspectives focused in particular on definitions of illness, and on how seriously professionals took reported symptoms and recognise parents’ special expertise. Such studies reveal the differing ways in which parents and professionals may conceptualise candidacy. In some cases, parents may seek to demonstrate that their child has a legitimate and authentic need for health care – a valid claim to candidacy – and may report frustration in getting professionals to recognise this. Their claims of their own special abilities in recognising candidacy are frequently based on the distinctive, intimate, and

detailed knowledge of their child, which they see as having a particular status (Dixon-Woods et al., 2001; Arksey and Sloper, 1999; Klasen and Goodman 2000). Klasen and Goodman, in their study of

hyperactivity, found that health professionals often did not believe in hyperactivity as a medical problem, seeing it instead as a product of family dysfunction. This influenced their willingness to share

information with parents and sometimes had serious implications for treatment decisions. Whitehead and Gosling (2003) found that parents of children with tuberous sclerosis reported having to make several visits to their doctor before getting a referral to a specialist; in many cases, the symptoms were recognised only once a health professional had witnessed them personally. Dixon-Woods et al. (2001) found that many parents of children diagnosed with cancer said that they had had to argue with GPs to demand further investigations.

NCCSDO © 2005 194 Similar struggles over the labelling of problems occurred in children with acute illness in studies that we analysed. Kai (1996a) found that parents felt excluded from the ‘mystique’ involved in a doctor reaching a diagnosis. For example, parents would fear a chest infection when their child's chest sounded ‘rattly’, but the doctor would pronounce the chest clear despite evidence to the contrary. This ran parallel to

differences in desired treatment: parental beliefs about the prescribing of antibiotics are more likely to be grounded in notions of severity and impact (for instance, disturbed sleep) than in the actual cause of the illness itself. Similar struggles between parents and doctors over the diagnosis of common illnesses, such as coughs, were reported by Cornford et al. (1993).

The importance of acknowledging the expertise that parents have developed was discussed in several papers. For instance, Robinshaw and Evans (2001) found that a large proportion of parents reported suspecting, and following up on, hearing problems in their children, but felt that professionals had not listened adequately to these concerns; indeed, they frequently reported being made to feel stupid for reporting them. Similarly, Pain (1999), in a study of how parents cope with childhood disability, found that parents' skills often were not utilised, and that this led to parents feeling devalued and to emotional damage as they felt less able to protect their child from pain.

In other cases, families may not recognise candidacy as it has been defined for them by professionals. Dodd and Newton (2001) point to evidence that parents do not always agree with staff on the extent to which review visits in outpatients are necessary, possibly explaining high rates of non-attendance.

An important component of struggles between lay and medical

perspectives concerned communication barriers. Seven papers address this issue (Jacobson et al., 2001; Tang and Cuninghame, 1994;

Whitehead and Gosling, 2003; Carter et al., 2002; Carter and Bannon, 1997; Churchill et al., 2000; Davis, 1995). In some cases,

communication difficulties arose from parents not speaking English as a first language (Tang and Cuninghame, 1994; Carter and Bannon, 1997). In others, communication difficulties arose from the different perspectives that health professionals and young people had. For instance, Jacobsen et al. (2001) found that young people felt that lack of time hampered their ability to communicate effectively with their GP, with 21 per cent reporting their consultations with GPs as not long enough. This was compounded with a perceived inequality of status and their view that doctors tended to talk ‘briskly ’.

The evidence we looked at suggests that it is possible to make sense of the different perspectives held by parents, young people and health professionals in terms of power and disempowerment. We have already touched on these issues in relation, for example, to the struggle that parents have to be recognised as having expertise in caring for their children. Ten papers addressed these issues (Hopton et

NCCSDO © 2005 195 al., 1996; Houston and Pickering, 2000; Jacobson et al., 2001; Kai, 1996b; Kai, 1996a; Robinshaw and Evans, 2001; Whitehead and Gosling, 2003; Carter et al., 2002; Cornford et al., 1993; Donovan et al., 1997). In particular, there is evidence that parents can feel disempowered in their ability to manage minor illnesses in their children by previous experiences such as serious illness or death of a child (Houston and Pickering, 2000). Moreover, this ability can also be compromised by the lack of readily available information, and the lack of understanding of parental concerns and beliefs on the part of health professionals (Kai, 1996a).

Counter-intuitively, however, it is possible for negative experiences to have an empowering effect on the way parents negotiate access to health care with professionals. Hopton et al. (1996) found that previous negative experiences of health care had empowered

respondents, and made them more proactive in seeking out-of-hours help from their GP in the future. For children and young people, disempowerment may result from their status as children and from their lack of experience in negotiating with adults in positions of authority. Jacobson et al. (2001) found that young people using primary care services often felt that they were not respected as a patient and were liable to be treated like children. Clearly, an important issue here is the ability of health services and health professionals to differentiate between young and older children in terms of the way in which they are spoken to, the information they are given, and so on.

Adjudications

In previous sections we have suggested the processes of adjudication – how decisions are made about categorisation and disposal – are key to understanding issues of how candidacy is managed. The

categorisation of children, for example into diagnostic categories, has a key impact on how they are subsequently managed by health services. The papers we analysed demonstrated a strong relationship between availability of services – or ‘authorisation’ to use services – and diagnostic status. Klasen and Goodman (2000) found that as soon as parents received a diagnosis of hyperactivity, other avenues of support opened up to them, including reading material, self-help groups and expert help. This pattern, of support and services being triggered quite suddenly by the receipt of a firm diagnosis is also found in studies of childhood cancer (Dixon-Woods et al., 2001) and of children with tuberous sclerosis (Whitehead and Gosling, 2003). An accurate diagnosis is frequently delayed; in the study by Klasen and Goodman (2000), the time between parents approaching their GP and confirmation of a diagnosis was between nine months and five years.

Frustration was also expressed by parents about inconsistencies in diagnosing and prescribing between different professionals (for instance, in the study by Kai, 1996a).

NCCSDO © 2005 196 Klasen and Goodman (2000) found that parents saw medical

recognition and ‘verification’ of the symptoms of hyperactivity observed in their children as extremely important. One parent who

‘succeeded’ in having their child diagnosed as hyperactive commented:

‘I felt very happy that there was a name, that I hadn't been imagining things, that I didn't have a monster, that there was a reason for his behaviour.’

Similar findings emerged in Whitehead and Gosling’s (2003) study, where parents felt a sense of ‘vindication’ that they had not been imagining symptoms or over-reacting, and in a study by Robinshaw and Evans (2001), where parents who had to wait until after their child's first birthday to receive confirmation of deafness or hearing difficulties were particularly relieved.

However, studies of how professionals come to decisions – or make adjudications – about children are surprisingly rare. A series of classic studies has explored issues involving children’s consultations (not included in our sample, but including Strong (1979); Silverman (1987), among others), but mainly as exemplars of other theoretical points rather than having a focus on issues of children themselves.

This work does offer important insights into adjudications. Dingwall and Murray (1983) demonstrate the special indulgence granted to children who attend accident and emergency departments. Children’s attendance, even for clinically non-important problems, was seen as more legitimate and acceptable than for adult attendance for the same types of issues.

Bloor’s (1976) classic observational study of decision- making by ear nose and throat surgeons showed how surgeons drew on heuristics, or

‘rules of thumb’, that broadly reflect issues of technical and social and moral candidacy that we have described in earlier sections. Some surgeons drew largely on clinical signs as the primary indication for surgery, while others drew on evidence about repeated episodes of tonsillitis that were affecting a child’s education. However, there have been very few studies of this nature and quality, and it is difficult to interpret the continuing applicability of these findings almost 30 years on, after major changes in policy and the shift in the epistemological basis of medicine from individual authority to evidence-based practice.

Moreover, recent years have seen the emergence of the recognition that decision- making in paediatric consultations may involve several parties, and that decisions may be jointly negotiated between children, parents, and professionals, but as yet there are few empirical studies of the outcomes of such consultations (Dixon-Woods et al., 1999;

Young et al., 2003).

Technical and social / moral candidacy

Diagnosis depends on professionals detecting or recognising pathology. The extent to which a perceived set of problems or

NCCSDO © 2005 197 symptoms were given medical labels and explanations was an

important issue in papers that we analysed (Hopton et al., 1996; Kai, 1996a; Klasen and Goodman, 2000; Robinshaw and Evans, 2001;

Sayal et al., 2002; Whitehead and Gosling, 2003; Cornford et al., 1993; Dixon-Woods et al., 2001; Edwards and Pill, 1996). Our

analysis pointed to difficulties in health professionals determining the technical eligibility of children for some diagnostic labels, intervention, or referral. Klasen and Goodman (2000) report that general

practitioners were often unsure about the boundary between normality and abnormality and were struck by the wide social and cultural

variation in what was seen as acceptable child behaviour. Rawlinson and Williams (2000) suggest that there is low recognition of

psychological disorders by primary care professionals, with substantial under-diagnosis.

Granier et al. (1998), in an interesting qualitative study of how general practitioners process clinical and contextual information in recognising meningococcal disease, demonstrated the heuristics used in diagnosing potentially serious illness. While some technical

information – such as presence of a haemorrhagic rash - was used in making judgements about candidacy for the diagnostic label of meningitis, intuitive knowledge, including GPs’ perceptions of the credibility of parents – was also very important.

As in the previous sections, consideration of the ‘social deservingness’

of some candidates is evident in some recent work in general practice (ReesJones et al., 2004). In this study, one GP is reported as saying:

‘It’s all very well for the PCG to tell us that (GPs should cut prescribing costs) but you try telling a mother who has got 3 children on income support: “so I am not going to give you Calpol you can go and buy it from the counter”.’

Rawlinson and Williams (2000) cite evidence that social factors such as parental unemployment, financial stress, and lack of support from the extended family may influence referral decisions to child and adolescent mental health services. Advocacy in seeking help with childhood illness has implications for the equitable provision of services, albeit in complex ways. Klasen and Goodman (2000) found that referrals to specialists were more often determined by parental persistence, or an inability to cope, than by a systematic assessment of the child's needs. Similarly, Edwards and Pill (1996) compared patterns of help-seeking in affluent and poorer groups of parents with toddlers. They found that while poorer parents were more likely to seek help for common problems such as infections and colds, more affluent parents were more willing to pursue services in relation to child behavioural problems.

Our analysis also demonstrates the importance of ‘operating conditions’ in issues of categorisation and disposal for children, including the beliefs and characteristics of professionals in particular setting. We identified the perceived unwillingness of doctors to discuss

NCCSDO © 2005 198 alternative therapies and alternative options in the independent

sector, reported by Robinshaw and Evans (2001) in their study of services to pre-school deaf children and their families.

Offers and uptake

We found little evidence about offers in our sample of the literature, apart from the evidence on non-attendance already summarised.

There is some fragmentary evidence that parents or young people may resist diagnostic labels that would trigger access to forms of attention or intervention. For example Young et al. (2002), and Dixon-Woods, et al. (2002), found that some parents resist the label of

‘asthma ’ that professionals have sought to apply to their children.

Summary: Presentations, adjudications and offers

Our analysis suggests that the candidacy of children is often contested between parents and professionals. Parents are called upon in

consultations to do the work of demonstrating that their child has an authentic and legitimate claim to candidacy, but they may vary in their ability to do this. In making a claim for their children’s candidacy, parents draw on their intimate, experiential, intuitive knowledge of their child to judge whether something is wrong, while professionals draw on clinical experience and medical knowledge. There are frequent reports of parents struggling to get diagnoses of serious illness in their children because of the discounting of their private knowledge, and there are also reported disagreements over the diagnosis and

management of the candidacy of children with minor illness. Parents and young people may feel disempowered in their interactions with health services, and this may create forms of suffering.

Adjudications of candidacy are important in allowing children to gain access to investigations, treatment, or other forms of health care. There is some

evidence that children’s attendance may be indulged, in the sense that even when they attend for problems that are not clinically important they are not seen as being illegitimate users. However, the ways in which professional judgements about children’s candidacy for diagnostic labels or treatment are made are poorly understood, though there are some indications that issues of technical and social / moral candidacy are likely to be important as they are for other groups. Again, these judgements are made in the context of operating conditions, including scarcity of resources, which may influence the selection of candidates.

5.2.6 Theme 6: Tractability: Policies, service

developments and interventions to improve access