Evidence reviews recommend that professionals attend to the non-clinical aspects of decision-making involving a GFT (including the values that parents attach to feeding children), to ensure consistent and structured support in care pathways, although structured support is not clearly defined.1,2 This study aimed to identify exemplar models of PSS to examine how these recommendations are implemented in practice. Given that PSS was integrated into children’s clinical appointments, PSS as a discourse and practice was difficult for professionals to disentangle from their routine clinical care. This was reflected in interviews with professionals, who mainly discussed PSS provision through the lens of their professional and clinical practice and in relation to risk management. Therefore, PSS as an embodied practice was relatively muted and also had ‘leaky’ boundaries where clinical ‘care’ and PSS were often used interchangeably; this semantic shift represented a tension throughout the study and is discussed later in this chapter in relation to the analytical construct of ‘hidden work’.
For the purpose of this study we initially interpreted structured PSS as support that was integrated through a care pathway. However, given the complexity of families’ journeys, which cross service boundaries, and the general absence of written pathways, we identified mechanisms that enabled the integration of children’s care at critical junctures and that served as foci for the integration and provision of PSS, even in the absence of explicit pathways. Haggerty et al.74 question whether or not formal care pathways lead to improvements in care and suggest that a more useful approach is to look at whether or not care is experienced as ‘connected and coherent’. Others suggest that care co-ordination can involve a range of strategies that fall along a continuum, including co-located services, services characterised by collaboration, and integrated services.75 We elaborate further in relation to our reflections on different service configurations and mechanisms for the integration of care and PSS.
Parents also differed in their need for PSS, which problematises, perhaps, the concept of structured support when a ‘one-size-fits-all’ approach is adopted. Such approaches are considered harmful when they undermine people’s own coping strategies and fail to build on resilience and contrast with the concept of personalised care, as expressed, for example, in terms such as MAC and TAC, used at some case study sites.76 We were also concerned that structured support could be defined by commissioners in terms of a set number of appointments, or quantity of time, which could limit the amount of support available; hence, we prefer to use the term ‘enabling structures’ for structures that support the provision of personalised psychosocial interventions.
Integration and theorisation of data
Our initial model for the analysis of data was based on that of Mahant et al.1,55 This model identified three overarching areas in which decisional conflict could arise when families make a decision to have a GFT for their child: the values parents attach to oral and GFT feeding; the context of child and family decision-making; and processes of care that describe the characteristics and capacity of services to support high-quality decision-making. The results of our provider survey highlighted a number of themes that referred to the wider structural capacity of services in supporting families; therefore, we used the Donabedian56 framework as a rationale for the synthesis and presentation of findings (). This framework views service quality as determined by structures, processes and outcomes. We populated the framework with descriptive themes that emerged from phase 1 and were investigated in depth in our case study (phase 2). We also recognise that structures, processes and outcomes are interrelated rather than discrete entities. In addition, we identified three analytical constructs from our case study in relation to PSS and processes of care. Whereas our descriptive themes presented in the case study remained close to the data, our analysis brought an interpretative element that generated three new constructs:77
Synthesis model of findings. IT, information technology.
hidden work
expressing emotional vulnerability
negotiations around risk and values.
Support needs of parents
Support needs of parents can be summarised under five main headings:
managing emotions and relationships (parents’, children’s and other family members’) around the decision to have a GFT and thereafter
negotiating maternal identities around new feeding practices
managing feeding and equipment and becoming technically proficient
developing expertise in ‘nursing’ skills (e.g. stoma care, changing GFTs)
managing feeding in everyday contexts, including negotiations around risks and values.
Reflections on different service configurations in our case study
Our research design does not allow us to say if there is one right way of delivering care. However, we have attempted to draw out enabling features that might move us towards an ‘ideal’ service configuration in terms of how PSS can be embedded at different stages of the child and family journey. These are detailed in our synthesis of findings in . provides a comparative overview of the different services on key characteristics identified in our synthesis model. We offer reflections on the strengths of different service configurations with reference to a range of mechanisms that served to integrate care and PSS. These included the following:
Comparison of services at case study sites
having a lead professional (e.g. CS01, CS03, CS04)
the integration of health and education (CS01)
MACs (CS02)
innovative approaches that integrated care between the community and tertiary services [e.g. a joint surgical clinic (CS01) and a tertiary nurse assessment model (CS03)]
a HEFCC (CS02).
Case study site 1
Case study site 1 was a specialist neurodisability service with dedicated feeding clinics and a large number of enabling features, including a high level of integration and a relatively high level of PSS achieved through integration with a co-located school, and task-sharing between health and educational staff. Care was co-ordinated by a lead paediatrician. In addition, there was a high level of parental involvement, including representation on feeding committees and parent-led use of social media (e.g. Facebook). This level of integration had been achieved through strong leadership, policy underpinning the partnership and the funding model, which included pooled budgets (recently implemented). In addition, a joint surgical clinic held in the community health services, involving a surgeon from the tertiary centre at which gastrostomies are placed, served to integrate care in line with research recommendations.29 This example of shared care contrasted with models in which tertiary service involvement was largely limited to a consultation with families for the placement of a GFT (e.g. CS04).
Although parental access to psychologists for support was not usual practice, members of the MDT had access to psychologists and psychiatrists for additional support as required. Although there was no written care pathway, the right to emotional support for children more generally was leveraged through the shared clinical services and school’s children’s charter, informed by a rights-based discourse and developed with children and families. Competency in providing PSS was strengthened through shared learning among team members. Although the model was highly specialised, and not necessarily replicable, it showcased elements of best practice that could be explored for adoption in other services subject to the availability of funding.
Case study site 2
Case study site 2 is an example of a generalist service for children with exceptional health-care needs tailored to a rural context and staffed by a MDT. The provision of PSS was enabled through a best practice statement that specifically mentioned the need to provide emotional support based on research evidence. Resources to support children and families could be leveraged through MACs. The model offered a different approach for achieving high levels of support for a small number of children, with assistance from a national managed network (NMCN CEN). The network disseminated best practice, including a DVD for families considering a GFT, produced with parental involvement. There was an educational module on the provision of PSS available through e-learning and developed in conjunction with a local university and the NMCN CEN. However, this training was not mandatory and was available only to individual members of the NMCN CEN, raising access and implementation issues.
Despite the challenges of care provision in rural areas, care appeared to be person- and relationship-centred and, hence, PSS was achieved in a relatively informal way. Relationship continuity across the life course was particularly strong with the CCN team. Problems following surgery were likely to be identified by the CCNs or in the 6-monthly reviews of children in the therapist/nurse-led, home enteral feeding clinic. This was a strong feature of the model given that research suggests that dedicated enteral feeding teams can reduce hospital re-admissions for GFT-related complications from 23% to 2% post surgery.78 The enteral feeding clinic also specialised in supporting oral feeding following GFT insertion, which parents, more generally, valued.
Case study site 3
Case study site 3 was a specialist neurodisability service and our case highlighted uneven provision both within and between services, with risk of gaps in community settings. Whereas CS03A had a feeding clinic, CS03B did not. Teams were co-ordinated by a named paediatrician; however, the model of teamworking at CS03B was described as serial, rather than multidisciplinary, with some members of the MDT employed by different trusts, attesting to the fragmentation of health services delivery. Staff saw families individually and the team communicated by telephone, e-mail or face to face at MDT liaison meetings. It was unclear if or how this affected families. Although there is no research to suggest which models of care work best in terms of child health outcomes, parents may have preferred the ‘one-stop shop’ approach afforded by the feeding clinic model. National Institute for Health and Care Excellence (NICE) guidance on the care of children with cerebral palsy (not feeding specific) recommends that children should be cared for by a core multidisciplinary team.79 The model of service delivery at CS03B appeared to rely more heavily on the lead paediatrician to co-ordinate and integrate care involving professionals across different trusts. There was a written care pathway but PSS was not explicitly stated. Of interest was the availability of the services of a psychologist at CS03A, although only particular groups of children were able to access the services through the CDC, based on the criterion of age, reflecting inequity in access within and across services. No similar resource existed at CS03B. Moreover, additional restrictions to accessing the services of the psychologist at CS03A were implemented during our study.
A recently implemented surgical nurse assessment model at the tertiary centre at which gastrostomies were placed provided an alternative model of integrating the community and tertiary services and supported families to make a decision about the need for a GFT. The surgical nursing team based at the tertiary centre at CS03 conducted an initial assessment of children’s need for a GFT and provided support to families before and after surgery, a model, as at CS01, that could be considered an example of best practice given that our provider survey (phase 1) identified gaps in communication between community and tertiary centres. Follow-up post surgery, at specified time points, allowed any problems arising from the placement of a GFT to be identified and actioned. The tertiary centre’s use of social media (e.g. Facebook) provided an opportunity for the provision of information to families.
Case study site 4
Case study site 4 was a district, hospital-based service where teams were co-located. The composition of teams varied according to need and, hence, there was a fluidity to how teams functioned. As at CS03B, the co-ordination of care was reliant on the lead professional. However, co-location is not a proxy for integration or a ‘unitary construct’ but a ‘complex set of relationships, organisational structures, and other features meant to help practices deliver care’.75 The difficulty in capturing this complexity was reflected in the service map at CS04, which has a three-tier feeding pathway (although unwritten), a further indication of the high level of specialisation. This level of specialisation was reflected in the fact that, until recently, gastrostomies were also placed within the service. This function then transferred to the tertiary centre, which had minimal involvement in supporting the majority of children referred, which contrasted with the model of care at CS03. There were strong links with the CCN team, which was viewed as the ‘eyes of the service in the community’, although reported to be under pressure. An important aspect of care was the traffic light tool (a communication aid developed with the input of parents) widely adopted by clinicians, which aimed to empower parents in clinical consultations. The tool could be adapted to help guide conversations around PSS issues related to children’s feeding and GFT placement.
Overall impressions
Medical models of working, which may be more dominant where the lead professional is medically or surgically trained, may support the integration of teams and services but be less effective in involving parents and ensuring that PSS is integrated routinely in care. Parental roles were stronger at CS01, typified by strong leadership and the integration of health and education through pooled budgets, although there was evidence of a strong partnership prior to this funding model. Nurse-led models can be very effective for ensuring PSS is integrated and provided, as at CS03 and in the CCN teams described at CS02 as well as at other case study sites, but they require sufficient staffing resources to be effective. Different models are likely to work for more rural settings, as at CS02, which was a generalist service staffed by a MDT responsible for children with exceptional health-care needs. There may be a role for psychologists in advising and supporting generic staff to integrate PSS, which may be a more feasible and effective use of resources than aiming to refer all parents routinely to psychologists.
Commissioning and procurement
A key point to note in our study is the variation in resources across a relatively small set of case study sites in addition to variations within services. This was particularly marked at CS03A and CS03B. However, CS03, and to some extent CS04 (where paediatricians and services were hospital based), is probably more representative of models of services in England. These variations, often historical in nature, may reflect adaptations to local contexts and local commissioning in England, but funding issues may require a national response to ensure parity and efficiency of provision.
Different procurement policies by hospital trusts potentially affected the lived experience of caring for children fed by a GFT. This was very clear at CS01 when parents were asked who the ‘go to’ person was when an issue arose. The ensuing conversation focused on the complexity of obtaining supplies and equipment owing to procurement policies that, at times, appeared unfathomable to parents. There was talk of a ‘post code lottery’, reflecting the wide catchment area that children came from and an inequality in provision. Parents demonstrated their expertise as skilled navigators of services in trying to obtain the equipment they needed. Previous research has described the stress parents experience over obtaining feeds and equipment and, hence, this is an area where support can be provided.80
Who provides psychosocial support: team members and designated roles?
Across all case study sites the provision of PSS was deemed the responsibility of the MDT, rarely a designated specialist, and provided in the context of children’s clinical appointments. However, few professionals had received training in PSS initiatives (7/31 in our costing study) other than during their formal professional training which, arguably, would not be sufficient to produce clinical expertise.81 This was confirmed by the professional questionnaire in phase 3, in response to which few respondents (4/31) reported feeling very confident in providing PSS. Professionals who participated in the phase 3 costings questionnaire appeared more confident if they had received specific training.
Generally, PSS was enacted by various members of the team at different points in the child and family feeding journey but was rarely formalised or documented in tangible ways, which also made costs of care difficult to estimate. Although professionals reported spending a considerable amount of time and effort supporting families in general, PSS as a discourse and practice appeared to be secondary to the more technical aspects of clinical care and was relatively hidden. Moreover, it was unclear whether or not the support offered by teams was what families wanted, and emotional support, where needed, was a gap highlighted by both providers and parents.
Although staff believed that families had access to psychologists through CAMHS, in reality many children did not reach the threshold (e.g. through the presence of harm to themselves or others) for this support and it was often unclear if parents had to be re-referred for support through their GP, highlighting a tension, perhaps, around ‘adults’ as ‘patients’ or ‘carers’ in children’s services. Moreover, where access was available, pathways were often unclear. Different views were expressed on the need for psychologists by both professionals and parents. Discussion of the inclusion or exclusion of psychologists in the context of funding was particularly prevalent at CS03 and CS04, and costs were a perceived barrier to including specialised staff offering PSS in teams unless savings were made elsewhere. The view that commissioners expected ‘more for less’ and issues of affordability informed responses rather than what staff felt was needed. Conversely, in feedback sessions, parents mentioned they would like the choice of seeing a psychologist, but were concerned about the burden of additional appointments if psychologists were not integrated into teams, and that a referral might suggest that parents were not coping. The provision of enhanced PSS involving a psychologist was valued by both HCPs and parents in the WTP study (phase 3). Although not statistically significant, parents attached a lower value to the enhanced service than did professionals. This may be because professionals were valuing their own time and input, whereas most of the parents had not experienced the support described in the enhanced scenario.
There was a view that the CCN team was best placed to offer support, although these services were described as ‘under pressure’ in some areas, including at CS03 and CS04. Nursing teams can play an important role in caring for children post gastrostomy, including during stoma-related complications and replacing devices,82 which may prevent hospital admissions.
There was little mention of the role of key workers in interviews in our study. This may, in part, be due to differences in terminology and understandings of the role, which can make comparisons across service models difficult.83 HCPs did not view them as part of the multidisciplinary feeding team. Although the literature emphasises the roles of key workers in co-ordinating care5 and providing emotional support,84 not all families have key workers85 (reports suggest that approximately one-third of children have access in the UK) and there have been problems implementing these schemes.86 Hence, in our study it was usual practice for the lead professional to co-ordinate care, including PSS. However, if the leads are doctors, they may see families with less frequency than other professionals. In Scotland the term ‘key contact’ was used and the type of professional would depend on the child’s age (e.g. a head teacher for school-aged children or a health visitor for children aged < 5 years), although this did not specifically relate to feeding. The confusion over terminology was confirmed by our parents in our PPI reference group. One parent stated that the term ‘key worker’ was ‘overused’ and hence it was difficult to identify who the key worker was and, in their view, key workers did not provide emotional support. Moreover, staff members at CS03 confirmed that early-support key workers, although they used to be available, were now scaled back and did not attend clinical appointments or offer support around feeding.
Although MACs provided a mechanism of support for children with complex needs at CS02, these were not used at other sites for feeding-related support. In some areas, particularly at CS03, MACs were perceived to be associated with safeguarding owing to resource constraints. A recent report from the National Audit Office, Pressures on Children’s Social Care,87 seems to confirm the impact of austerity on services: ‘Local Authorities have responded to financial pressures by prioritising child protection work and reducing spending on non-statutory children’s services’ (reproduced with permission from The National Audit Office87). In some areas, ‘Multidisciplinary Reviews’ or ‘Child in Need Reviews’ are used and may serve as a means of assessing and meeting some families’ need for support.
Information and resources
There was a general lack of child- and parent-friendly materials except at CS02, which had access to a DVD produced for parents by the NMCN CEN. Information provision was often technical, and some leaflets included drawings of older adults rather than children. Moreover, it was unclear how parents accessed the information. Some recent materials (appropriate for children) were identified in feedback sessions with staff, produced by a home enteral feeding company in conjunction with Carers UK, but not all professionals were aware of these resources and there may be ethics barriers to promoting materials by companies that produce infant formula in addition to commercial feeds. Parents were also using social media to obtain information. For example, at CS01 parents solicited advice from others through Facebook.
Structures to facilitate peer-to-peer parent support
No site had a formal approach to involving parents as peer supporters, although there was some evidence of clinicians putting families in contact with each other or directing parents to people or agencies who could facilitate this. However, this was not consistent. Professionals generally valued the idea of parent peer contact but expressed concerns about confidentiality and ensuring that parents were well matched. There was a concern that peer contact could have negative consequences if not appropriately managed. This was identified as a potential barrier. Some groups of parents valued the opportunity to meet other parents and receive information about their experience of having to make a decision about their child being fed via a GFT; others, particularly at CS02, tended to value the expertise of professionals. The way parental support is presented may also be an issue. Coffee mornings or social events featured in most cases, which appealed to parents, whereas the term and concept of a ‘parent support group’ did not always resonate. Parents’ involvement was more active at CS01, which again may attest to the uniqueness of the partnership between school and health-care services. Facilities for parents to meet certainly helped, and parents were actively involved in joint committees between health care and education. However, the parent group was not professionally led and appeared to form organically around the school, supported by a staffing resource. The school was able to serve as a focus for galvanising parental involvement through well-established networks and more casual contacts, although not all parents were involved. There was also evidence of some parents setting up their own group in other areas (CS03B).
We were not able to investigate the role of nurseries in offering support for preschool children, but there are similar networks of parents in early-years provision that would be worthy of further study. The success of parental networks at some sites (e.g. CS01) was such that there was a ripple effect to schools outside the case study site. However, not all parents accessed parental networks, which may raise issues of equity in terms of accessing support. Not all parents felt that they needed to access parental support, and for some, owing to geography and distance, attendance at parental events was not possible. Staff often perceived that parents were accessing support through social media, but little is known about these interactions. Nurses at one tertiary centre used social media (e.g. Facebook) to introduce parents to each other.
Processes and mechanisms of care
Processes of care include the interactions of staff with parents as opposed to the clinical tasks that are performed. We identified three analytical constructs governing processes of care: hidden work, expressing emotional vulnerability and negotiations around risk.
Hidden work
This construct describes the hidden work that both parents and professionals enact. Although most professionals had a good understanding of the values that parents attached to oral feeding and the conflicts that can arise when making the decision to gastrostomy feed a child, they struggled to articulate how they specifically delivered PSS. Theoretical approaches to support were rarely mentioned. Indeed, staff may not have a theoretical understanding of what they do when they support families. The more embodied the work the more difficult it may be to articulate practices that are taken for granted, and, methodologically, interviews are not the best tool to analyse practice. The inability to describe work unless doing it and the tendency of hidden work to be undervalued or not recognised have been noted in other studies.39 Allen,88 for example, in a study of nurses’ organisational practices, suggests that the hidden nature of work becomes normalised through everyday practice, including the effort involved in the organisation and co-ordination of patient care. Allen88 suggests that the culture of ‘measure and manage’ in contemporary health care renders particular types of work invisible and tends to privilege task-focused work over relationally focused care. The invisibility of the skill involved in supporting families was evident in one professional’s claim that a ‘common sense’ approach to support was needed, which underestimates the skill both acquired and needed. Indeed, our research suggests that the provision of effective emotional support requires a lot of skill.
The lack of recognition and value of the work involved in providing PSS may be a reason why it is not recorded in children’s records, which in turn conspires to ensure that the work remains hidden. Moreover, it may not be deemed appropriate to note the care of parents in medical records for children who are the primary patient. This invisibility of PSS in health records rendered the economic costings of care all the more difficult in phase 3; yet, as Bowlby89 notes, ‘[t]he performance of informal caring involves a person using resources – people, ideas, material objects, as well as time and space to care – accessed through particular places and spaces at particular times’.
There was a parallel in the hidden work enacted by professionals and that of parents managing their own emotions and the emotions of other family members when making a decision to feed their child via a GFT as well as in the support that they offered other families as peers. Managing a myriad of relationships with professionals and navigating complex care systems was another aspect of this hidden work; for this reason, perhaps, many parents preferred to receive PSS from a known individual to minimise relationship burden.
Following surgery, parents became highly proficient at dealing with the practical and technical aspects of gastrostomy feeding and learnt what were arguably new nursing tasks. This journey from novice to expert, however, became an imperative, rather than a choice, where support from services appeared to wane over time. Moreover, the consequences of not managing the GFT could result in long journeys and admission to hospital, which many parents wished to avoid. The development of expertise may also provide an opportunity to take back control of children’s care and feeding as witnessed by the amount of time some parents spent training school staff before allowing them to feed their children (as evidenced at CS01) and the adoption of BDs, which inevitably placed parents as risk managers – another aspect of hidden caring work.
The research also highlighted the impact on professionals of having to manage decisional conflict and to support families through difficult decisions about children’s feeding, which they too experienced as emotionally demanding. This indicates a need for emotional support for professionals too, through clinical supervision. Support from a psychologist might prove useful in these contexts.
Expressing emotional vulnerability
Not all families viewed a GFT negatively; hence, families’ need for PSS varied and may reflect difference in values and family contexts,90 suggesting that a personalised, approach, tailored to individual children and families, rather than a pre-structured approach, is warranted. It may also have reflected the timing of the research in relation to the gastrostomy; for example, many parents provided a historical account, whereas the need for support may be more readily expressed when parents are at the centre of making the decision. Although some parents minimised their need for PSS, their narratives about their experiences were vivid and drew on emotive terminology (e.g. ‘terrified’, ‘scared’) even when considerable time had lapsed.
Some presented a stoical front, minimising their need for support, reflecting, perhaps, cultural differences in expectations about health-care services. There was a sense of needing to get on. Some parents’ narratives reinforced a division between the need for emotional or practical support and generally emphasised the latter. However, families may not be able to assert their needs for PSS for a variety of reasons, not least because they felt that asking for support, or counselling, may signify emotional vulnerability and inability to cope, something that many parents would be keen to avoid. Some parents reported that there was not enough time to raise the issue of emotional support in a busy clinic (it can be difficult for parents to intervene in the flow of clinical tasks), reflecting a temporal dimension to the meanings parents attach to spaces as places of care.89 Bowlby89 argues that, because spaces are socially defined, professionals should attend to ‘how people feel about the timing and placing of the caring relationship in which they are involved’. More neutral spaces may help parents to discuss their concerns. Asking for help with the technical and practical aspects of GFT care may be an easier and more immediate demand in the face of having to learn new nursing procedures. Parents did expect to be tutored in the care of the GFT, although some reported more support in this area was needed before discharge from tertiary centres at which the GFT was placed. The side effects of the procedure in the immediate aftermath of surgery and beyond were certainly experienced as traumatic by some parents, suggesting an important touch point where additional support may be needed.
At a feedback session in one service, clinicians felt that, given the need for support was unique to families, they should take the lead in communicating their needs. There was some frustration expressed about parents who wanted to ‘push the decision back onto the clinicians’. No doubt this was underpinned by an attempt to democratise and share decision-making and hence minimise decisional conflict.91 However, it can position families into ‘unwilling collaborators’ in decisions about their child’s feeding even though they may feel they lack expertise.27
Negotiations around risk and values: decisional conflict
Our analysis was informed by Mahant’s model of decisional conflict.1 Both professionals and parents were involved in negotiations around risk, including on the safety of oral feeding, that is the risk of oral aspiration, the use of blended feeding, which was generally not recommended by services, and the decision to have a GFT. Previous research identified tensions between professional and parental values, with professional practice focused on the biomedical aspects of care (e.g. nutrient intake and weight gain) and parents focused on the lived experience of feeding a disabled child. However, this distinction is perhaps too binary, because many professionals in our case study demonstrated an appreciation of the values parents attach to food, feeding and mealtimes and indeed shared these values. This is a positive finding, suggesting that professionals were aware of the issues highlighted by studies conducted > 15 years ago.27 Major conflicts around feeding between professionals and families were rarely reported in interviews. Rather, professionals reported that they respected parental wishes and were prepared to go at the families’ own pace in making feeding decisions. The consensus was that you could not force a medical intervention on parents who did not want it. However, some professionals expressed concerns about how to respect parental wishes and while also ensuring the best interests of the child. This would seem to support the findings in the provider survey, which suggested a generalised concern about feeding and safeguarding, although this was rarely actioned. This may reflect a team decision, despite individual concerns, and the availability of support through clinical supervision. Alternatively, it may be the case that concerns about feeding are rarely the sole reason for safeguarding.
The assumed risks associated with oral feeding, and an unsafe swallow, were often minimised by professionals in favour of the child’s quality of life, which, in line with parents’ views, was assumed to be better if feeding was normalised in family contexts. However, the extent to which professionals were willing to accept parents’ desire to feed their child by mouth was also dependent on the way that teams operated and whether or not there was multidisciplinary teamworking with an ethos of collective responsibility for risk management. There appeared to be an ethos of ‘risk feeding’ – that is, measures were put in place to minimise the risks associated with oral aspiration – rather than recommending a strict nil-by-mouth feeding regime, to respect caregivers’ wishes. Some professionals felt that a GFT could help normalise feeding by mouth because the pressure on children and families is reduced if most of the nutrients are delivered by GFT.
The use of BDS appeared to be a particularly contentious area given the lack of evidence and professional consensus to recommend the practice.92 Resourcing issues were also raised as a barrier by staff to their use, including an anticipated increase in the size of professionals’ caseloads. The use of BDs post gastrostomy attests to the values parents attach to food and feeding practices,93,94 although BDs were mainly supported for medical, rather than social, reasons in clinical arenas. Professionals had to balance the wishes of parents against professional and institutional guidance and ‘supported’ rather than ‘recommended’ BDs and, therefore, located their practice in the grey area of risk management in feeding.20 Inevitably, institutions adopted a position of compromise on the use of BDs, which was sometimes experienced as contradictory. For example, in one school, only food prepared at home could be blended and put in the GFT, whereas school meals could not; one hospital would permit only a mix of formula and BD if a child was admitted. Therefore, parents would have to adapt food preparations in line with different institutional policies, or agree to these adaptations, and, hence, engage in negotiations around the management and ownership of risk20 – another aspect of hidden work and source of stress.
Outcomes
Although this was not a systematic study of outcomes following gastrostomy, parents generally viewed gastrostomy favourably, as documented in the research literature,95 although many recalled problems in the immediate aftermath of surgery and being faced with having to learn new feeding practices and nursing skills. Side effects of the procedure resulted in families having to seek health care, involving travel and sometimes admission to hospital, or required parents to develop expertise in managing the nursing care of their children themselves, particularly as support from services waned over time. Research has documented the benefits of gastrostomy feeding, including reductions in psychological distress over time (e.g. at 12 and 18 months post surgery).96,97 However, problems that children and families experience when using home enteral nutrition overnight include sleep disturbance, dislodgement and blocking of GFTs, and problems with the pumps delivering feeds are also reported.80 Models of care that support families in the immediate aftermath of surgery, such as the CCN team and the home enteral clinic at CS02, and the tertiary nursing assessment model at CS03, have the potential to improve care post surgery by minimising the side effects of treatment and preventing readmissions to hospital.78,98 Models of care that better prepare families for surgery, as at CS03, where children were assessed by nurses at the tertiary centre where the GFT was placed prior to appointments with surgeons, may also provide important spaces for families to discuss issues of concern. In this example, the surgical nurses additionally provided an important link between families and the CCNs, who also provided support, although there was a perception that these services were under-resourced. Schools also play an important role, and there was evidence of significant task-sharing between health-care and educational staff at CS01, a service characterised by high levels of integration between health-care and education. At other case study sites (e.g. CS02), school staff would not necessarily engage in nursing activities, which would be the role of the CCN team.
Research on health outcomes for paediatric neurodisability has demonstrated that parents value emotional well-being as an aspect of health.99 In our study, little was recorded in the children’s notes that could be utilised to evaluate this aspect. Recording of satisfaction with the procedure, or the PSS provided, was generally absent, as were any quality-of-life measures for children and families. Data on the impact of parental peer support, given that this was an informal arrangement, were not captured, nor was the effect of training on team performance. A systematic review of core outcomes reported that ‘life impact and resource use’ were under-represented in research studies.100 The authors of the review suggest that these outcomes are either undervalued or not measured owing to a lack of standardised tools. This also presented difficulties with phase 3 of this research on costing PSS. A recent study analysing children’s medical records in Sweden101 demonstrated that clinicians emphasised biological and nutritional outcomes post gastrostomy, whereas information on psychosocial aspects was only sparsely documented. The authors concluded that information relating to medical intervention goals dominated and was prioritised over psychological aspects, despite the involvement of psychologists and social workers in setting these goals – findings that were supported in this study.
The lack of documented outcomes is not surprising given the hidden nature of PSS work. Professionals reported that they spent considerable time supporting families. If such investment of time is to be valued then this work needs to be rendered visible through appropriate documentation and evaluation to show the potential to improve the quality and experience of decisions about children’s feeding, parental enablement and the PSS provided, including the overall impact across the life course. It may also help to obtain resources.
Equally, there were no mechanisms in place to record or evaluate the impact of specialist training on the team. If training was focused specifically on assessing and meeting the PSS needs of parents, or staff with specialist skills were involved in supporting parents or teams, this could prove an effective use of resources. This is important given that austerity has led not only to services being cut but also to professionals having less time with children.102 Team training, which strengthens the ‘collective competence’ of the team, could ensure that PSS is consistently embedded103,104 rather than left to individual interest, and could also draw on the expertise of parents as trainers.105
Implications for practice and services
Integrating psychosocial support
In interviews, HCPs report spending significant time supporting children and families, but because PSS is integrated into appointments it is undocumented and therefore not recognised or valued, and provision may therefore be inconsistent.
The challenge for services is how to better integrate PSS into clinical ways of working by creating spaces dedicated to PSS initiatives that can also be documented, audited and evaluated. The different mechanisms for integrating care identified in this study could serve as foci for strengthening PSS initiatives in these enabling structures.
Because there were differences in parental need for PSS, a personalised approach using appropriate assessments by a named staff member, with training and with continuity of the professional involved, could also ensure effective use of resources. Given that parents and children may not be able to assert their need for PSS in time-limited appointments dominated by clinical aspects, appointments where the primary focus is PSS or longer appointments with dedicated time may enable parents to discuss their concerns. Flexibility will be important because parents’ need for PSS may not coincide with appointments and parents may find it difficult to talk about their feelings in the presence of their children. PSS could be formalised as part of standard care, which would help to normalise emotional vulnerability, and standards of support could be developed and shared with children and families (see Report Supplementary Material 8). Because professionals had different ideas about parents’ PSS needs, ranging from a discussion about the risks involved in placing a GFT to an understanding of the emotional impact of the decision (e.g. a grief journey), we recommend the term ‘psychosocial emotional support’ to ensure that appointments focus on values and emotions in addition to clinical risks and tasks. Service providers could offer home visits, which have been shown to be valued, although this would incur costs for travel and additional time.
Parents also expressed a preference for receiving support from someone they knew, which suggests the importance of relationship continuity, which may be an important factor when considering how to integrate support from a designated member of staff (e.g. psychologist or equivalent), where available. School staff also have an important role to play in wrapping support around the child and family and could be more proactively involved in supporting families through team training. Lead professionals have a role in co-ordinating this support, which also needs to be recognised.
Where access to a psychologist or equivalent professional with specialist training is available, it would be helpful to parents and staff to know how to obtain this access, should they choose, and what to expect through clear pathways. Careful attention to the use of language (terminology), as well as how the issue of PSS and the opportunity to see a specialist is raised, will be needed to avoid the suggestion that parents cannot cope and, hence, reinforce the sense of failure that many parents may already feel.
The provision of child- and family-friendly information using social stories106 could also be better integrated into care as a standard and entitlement to ensure equity of access. There was evidence of a DVD for parents at CS02, which could be shared, and online resources made available through professional and parental networks.
Mechanisms for recording and auditing PSS may help to make the case for additional resources and could provide useful costings information. National guidance on how to code and capture data will be necessary107 to minimise discrepancies in coding to compare service data. Coded and structured data could then be exploited for secondary purposes.108
Training and education
Staff may benefit from specialised training that brings a psychological approach to the way teams work specifically tailored to the PSS needs of this group of children and families and could form part of induction or appraisal as a means of embedding training. This is important given the assertion that, although services can make a difference to the health-care needs of children, they are less able to meet the social and emotional needs of families.109 Team training, including staff from education and social care, would be particularly beneficial to strengthen collective competency. This would ensure a systems-based approach to embedding and providing psychological support, rather than an approach based on the initiative, skills or interests of individual practitioners. There is evidence for the benefits of interprofessional education110,111 and, in the context of quality improvement initiatives, it can improve practice.112 There was evidence of an online training resource at CS02 and this could be made more widely available for educational purposes. Parents can also play an important role in delivering professional education. Training for professionals could focus on how to enable decision-making through guided and structured conversations with families, drawing on research evidence.90 Communication tools, such as the traffic light tool at CS04, where parents could identify their priorities for the appointment, could be adapted to ensure that PSS was the primary focus.
Parent peer support
Establishing a formal register of parents willing to talk to others may overcome concerns about confidentiality using models adopted by many charities [e.g. the peer-moderated group run by Together for Short Lives (Bristol, UK)]. Services could encourage the development of parental networks through coffee mornings. Social media can play an important role for those parents living in rural areas, geographically dispersed or preferring support at arm’s length to face-to-face support, or where there are space restrictions. There was evidence of parent-led Facebook groups where parents solicited advice from each other, and professional groupings used Facebook to connect parents in our study.
The suggestions we have made here are of relevance to the wider children’s services and workforce, particularly the training of staff to incorporate a psychological dimension in their practice and the potential role of social media.
Strengths and limitations of the study
Methodological limitations
We conducted a qualitative case study with a focus on four service configurations chosen, in part, from the findings of a WBS that produced a low yield of responses. Therefore, we cannot claim that these services are representative of all services. However, we chose sites based on what they could tell us about how PSS was provided and integrated into children’s care and the factors that enabled services to provide the support they offered based on the findings of the WBS and additional theoretical criteria. A study on the organisation of midwifery units51 similarly chose four sites, and generalisation in that study was seen to work on a ‘conceptual and theoretical level’. We believe that our analytical constructs (hidden work, expressing emotional vulnerability and negotiations around risk) are theoretically generalisable and reflect processes of care for families regardless of the different characteristics of the services we chose to study. We also recognise that the mechanisms for the integration of care that we have presented may not be exhaustive, and that our findings are provisional, given that services are often in a state of change. Indeed, we witnessed changes in the organisation of care at two sites over the course of our study – a finding reported elsewhere.113 It is of interest that a survey of 100 parents conducted in New South Wales, Australia, reported overlapping concerns with those reported by some families in this study: families expressed dissatisfaction with their care and the support they received both before (42%) and after (36%) surgery – themes that resonate with some parents’ experiences in our study (although not all), albeit in a different context.114
It proved extremely difficult to disseminate a national survey (phase 1) outside a professional database of leads of child development teams. Dissemination through the R&D networks of different trusts required a considerable amount of administrative work given that each R&D department must assess their capacity and capability to participate in research studies. We had little control over the dissemination of the questionnaire. The survey was disseminated during a transition period for the HRA in England and Wales, which led to considerable delays and inconsistency in the process of obtaining permissions. This undoubtedly led to a poorer response rate than anticipated, and we have discussed further methodological limitations of surveys as tools to capture organisational practice in the context of complex service configurations in Chapter 1. There were also differences between responses reported in the WBS and actual practice. For example, 15 out of 35 respondents stated that PSS was formalised, and 19 out of 23 respondents stated that referrals to other parents were formalised, yet our field work (phase 2) suggested this was not the case. These differences may be due, in part, to sampling or an artefact of the methods used. We were better able to probe and tease out these differences in interviews.
Interviews can also have their limitations when used to identify everyday practices that remain hidden.39 Ethnographic observations of care, and reflective interviews with teams and parents, following clinical consultations may prove a more effective approach to understanding the delivery of PSS in real time. This may prove challenging to organise where facilities and time are limited.
The system of permissions
The permissions process for the case study research was also administratively onerous given the fragmentation of services (community services coming under one trust and tertiary services another) and where members of the MDT were employed by different trusts. Each case required at least two sets of permissions. In one case an additional set of permissions would have been required to interview one member of the MDT employed by a different trust. Because this was not an efficient use of research time, some members of the MDT were not interviewed. Assessments of capacity and capability often took several months, particularly in the second half of the study, owing to concerns about the General Data Protection Regulation (GDPR).115 One R&D department made an application to the Caldicott Guardian because our research involved children, demonstrating an additional level of governance not required elsewhere. Therefore, the model of research governance proved challenging for a project requiring a more iterative and flexible approach – an important characteristic of progressive focusing. Regional and cross-sector approvals would to help minimise the administrative burden for studies of this type and complexity.
Parent and child participation
It proved difficult in some cases to engage parents and children in the research. The research team did not have direct access to parents and relied on research nurses to disseminate information about the project. Before sending information by post, the services contacted parents by telephone to seek their permission to participate and send out the information. However, the research team, concerned that this might affect response rates, felt that the first contact messaging should be nuanced in a way that encouraged participation and consent on receipt of the information. We also asked services to advertise the project through their social media and via posters in clinics (which needed additional approvals). In addition, our lay chairperson contacted local parent groups informally, where these existed, to inform them about our study. It is also possible that families were dealing with more pressing issues that took priority in the face of cuts to local services,102 and some of our case study sites were drawn from areas characterised by higher than average levels of deprivation, which may have affected participation rates. One service cautioned that, historically, parents did not participate in qualitative studies, suggesting a culture that is biomedical research dominated. Poor parental recruitment in palliative care research as a result of professional gatekeeping has been reported.116
It can also take time to access children because of the need to work with gatekeepers, including parents, who provide consent to interview children.117,118 An audit of consent forms across two case study sites revealed that just over half of parents did not consent to their child participating in research. Most parents when asked to consent left the box blank, or actively refused, or put ‘not applicable’. Reasons for refusal included that the child was ‘non-verbal’ and that the child had global developmental delay and could not speak. One parent agreed providing they were present to assist with communication. There are particular challenges to interviewing children in this population (approximately 42–60% are estimated to have communication impairments)10,60 due to the different modalities that they use to communicate and how these interactions are interpreted.119 For this reason we planned to video-record interviews. However, one service would not allow us to video the interviews of children on their premises, although the research had received ethics approval. Moreover, the service was not able to provide rooms for interviews owing to space limitations. For those parents who did provide consent, it proved logistically difficult to arrange interviews owing to children’s schooling and the need for permission to video-record on school premises, as well as illness that prevented participation. Because some parents lived a considerable distance away from health centres, with little public transport, travel to families’ homes made it difficult for researchers conducting field work at a distance and Skype interviews would not be suitable.
It also took time to establish a relationship of trust with children and learn their preferred way of communicating, which would have required repeated visits, with the potential to affect children’s schooling and family life. Gaining children’s assent to participate could take up to 30 minutes, and in the case of one child 20 minutes was their maximum attention span. One interview had to be conducted through the child’s teaching assistant, but researchers have questioned the validity of children’s views expressed through intermediaries.120 Therefore, we have not presented data from children in this report in any substantive way. However, our PPI work involving children provides a particularly powerful example of children’s views on the right to support.
Timescapes and experiences
Parents’ accounts of their experiences were often historical and reflected diverse timescapes. Hence, issues took on different significance depending on where parents were in their child’s feeding journey. For example, in some cases decisions about gastrostomy were made, and the surgery undertaken, many years ago, and the children were now in their teens, whereas other experiences were much more recent. In some instances, decisions had yet to be made. Thus, parents’ narratives were located in the past and present. However, the accounts of staff almost invariably described their experiences as a provider of care in a service at the case study site under investigation and in relation to current practice, which often served to support the views expressed by families. Moreover, parents of older children provided data on the experiences of GFT feeding across the life course, not previously reported, which adds to our understanding of support issues beyond the decision-making phase.
Moreover, owing to the complexity of children’s needs and the severity of their neurodisability, children often received care from multiple health providers in different locations. Parents sometimes discussed their experiences in relation to services within and outside the boundaries of the case study sites. Parental narratives therefore traversed these complex timescapes and landscapes of care.
Resource use, costings and willingness to pay
Response rates for the costings questionnaire from both parents (20%) and professionals (28%), although comparable to that reported in a study costing key worker schemes (30%),121 warrant further discussion. An audit of consent forms at two case study sites revealed that just under one-quarter of parents did not consent to participate in one, or both, of the phase 3 studies. It is of interest that 30% of staff did not consent to participate either, although at this stage the costings questionnaire had not been included in the information packs. We later changed the stage at which the questionnaire was disseminated so that it was included with the consent forms for fear of sample attrition. For example, owing to a change of sponsor, the project was paused for 1 year at the time that the questionnaires were sent to CS01 for dissemination; however, owing to indemnity issues, they were not sent out until after the pause. This inevitably led to a loss of momentum and continuity. There was much discussion in the PAG about whether or not sending the questionnaires with the consent forms contributed to information overload. We asked the local research nurses to advise parents that they did not need to complete the costings questionnaire at the same time as the consent forms and that they could receive assistance to complete the forms from the research team to maximise consent.
Higher response rates (e.g. 71%) were reported in a study on the cost-effectiveness of gastrostomy,28 but that study took place at a tertiary centre with a higher volume of children than the community services in our study. Parents were recruited directly in clinics by an onsite researcher who had formed a relationship with the families because the research design, involving multiple data collection points, necessitated frequent contact with the families, before and after the placement of a GFT. The researcher was therefore known to the families. The researcher was able to assist families with the completion of forms at the hospital or by telephone. Gatekeeping was also minimised. However, in our study researchers were very much ‘outsiders’ to the services and not allowed to approach families directly. Future costing studies may therefore need to be conducted at the regional or tertiary centres to capitalise on the volume of patients, although much of the support will have taken place in the community, sometimes over many months or years.
Low response rates are not surprising given that we were looking for a particular cohort of children. Moreover, parents may be wary of participating in research if they feel that this could result in the withdrawal of services that are already perceived to be under threat.87,102 Indeed, this was confirmed by a professional at one case study in conversation with a parent. Professionals may have similar misgivings about costings research in a climate of cuts and limited resources, particularly where services may be under review, as was the case at one of our sites. One clinician, for example, did not agree to the WTP aspect of the study and refused to advertise the study to parents because it might be misconstrued as requiring payment for health care.
Our estimates of cost were based on the responses of eight parents, five of whom reported that they had received PSS in the previous 12-month period; therefore, the results have to be interpreted with caution, as should the estimates of time provided, given that self-reporting of time spent in activities may be over- or underestimated.13 Other parents either indicated that they had not attended appointments in the previous 12-month period or left this section blank. There was a perception in our case study that parents had to learn to manage what could arguably be described as nursing tasks post gastrostomy. They may have resolved their issues themselves or through other means, for example by telephone, and not received appointments per se. Again, this reflects the problem of researching small populations with health disparities122 where data are lacking or simply not recorded because PSS is not recognised or valued as a distinct activity by services and commissioners. However, this is an important finding.
Notwithstanding the limitations, a key strength of this study lay in the use of a mixed-methods approach, gathering data from a range of perspectives where possible. This meant that professional reports of if and how PSS was provided, for example, could be balanced by the views and reported experiences of parents and carers, and a range of professional experiences were captured. In addition, the use of observation, although only limited data are reported directly here, provided a third ‘observer’ perspective that added to our capacity to triangulate the findings. The case study has also showcased several initiatives in providing PSS that will help services to further develop and embed resources. The case study has also highlighted gaps in service delivery and the training needs of staff.
Implications for future research
Potential areas for future research include:
A study to develop, pilot and validate an instrument to assess PSS co-produced with families.
A scoping study of existing tools to assess PSS and their relative strengths and limitations. This would identify gaps and the need for the development of a brief tool, co-produced with parents. The tool should be easy to implement in busy clinics and should document outcomes that are in line with agreed service goals and that are important to parents.
The development and evaluation of parent peer support initiatives for families considering a GFT for their child.
Parents expressed different views about peer-to-peer parent support, with some strongly in favour. Although the evidence for peer support schemes is not conclusive,
123 there is evidence of benefit in mental health services. Schemes have produced modest cost savings,
124 although they are resource intensive to establish. In our study, professionals emphasised the importance of matching parents, and this was also raised in Shilling’s study,
123 along with a number of methodological considerations when planning studies, including time frames, comparators and measurement of health outcomes. A feasibility study would provide important contextual information influencing outcomes
125 and could inform a future trial involving formal quality-of-life outcome measures.
An exploration of professional and parental attitudes towards costing studies and barriers to participation.
In a systematic review of peer support
123 no studies of cost were identified. Similarly, an absence of studies on costings, attributed to a lack of suitable outcome measures or an undervaluing of studies involving costs, has also been reported in neurodisability research.
100 A qualitative study exploring professional and parental attitudes and barriers to participation in costings studies, and the acceptability of tools to collect data and outcome measures, may help to inform the design of future studies.
A study to develop and evaluate the role of parent trainers in training packages for health and social care professionals.
Our study identified the need for appropriate training packages for teams and that parent trainers could play a role in meeting this gap
126 given their expertise. Standards of delivery and jointly agreed competencies would be needed. Training packages co-produced with parents and professionals would ensure appropriate content.
