Key constituents for integration of care for children assisted with long-term home ventilation: a European study

Data were collected by a Country Agent (CA) in each of the 30 countries between July and December 2016. This was a key methodological feature of the MOCHA project, the remunerated retention in each country of a part-time CA – a local expert in child health services – who acted as the informant for obtaining data requested by the principal scientists in the project. The data was collected by the CA from local indigenous sources including health and social care experts, policy makers, health care governing bodies, and expert stakeholders including parents/guardians and advocacy groups. For more information about the country agents, please see the MOCHA website http://​www.​childhealthservi​cemodels.​eu/​partnerlisting/​country-agents.

Data were analyzed using descriptive statistics and a thematic analysis was undertaken of the free text data provided. Attride-Stirling’s thematic analysis network [16] was applied to the textual data.

The key findings from all domains surveyed are presented in Table 2. No country had all of the core components in place for all of the domains examined and there was therefore no discernible pattern overall in the results. It was reported that Italy had all of the structures and processes examined in place for four of the six domains: screening, assessment and referral; access to care; community-based services; and family-professional partnerships. Norway reported that it had all of the structures and processes in place for three domains: screening, assessment and referral; access to care; and care coordination. Three countries reported that they had the structures and processes in place for two of the six domains: Estonia - screening, assessment and referral and access to care; The Netherlands - care coordination and community-based care; and Croatia - community-based care and family-professional partnerships. A further seven countries reported that they had all the structures and processes in place for one of the domains, all of which were varied. The only similarity in this finding was that Denmark and Portugal had all core components in place for screening, assessment and referral, while the Czech Republic and Lithuania had all core components in place for access to care.

Three global themes (GTs) emerged from the text provided by the CAs: ‘family preparedness for transitioning to home’, ‘coordinated pathway to specialist care’ and ‘legal and governance structures’.

The theme ‘family preparedness for transitioning to home’ describes the characteristics of effective integration of care at the community and acute care interface for children assisted with LTV as parents transition to becoming the child’s primary care giver in the home. This theme emerged from accounts from CAs on facilitators of a successful transition to home currently in place in their country and arose from two organising themes (OTs) ‘individualised care’ and ‘discharge coordination’ (Fig. 1). The OT ‘individualised care’ refers to the clinical readiness of parents to take care of their child on LTV following their discharge from hospital. Linguistically appropriate information was identified as a key constituent to effective individualised care, to support equity of care and optimum readiness for caring for the child at home. It was also suggested that parents are best supported in their transition to home when they have the opportunity to gradually increase their care input, according to their own perceived level of readiness to become the child’s primary caregiver. A phased step-down plan was identified as an appropriate way to facilitate this, whereby parents increase their input in to the clinical care of their child in an incremental manner.

If parents feel more secure, the child comes to a step down unit, where the parents share a greater part of care themselves, but know they can always call someone for support. The last step in inpatient care before discharging, is the regular ward, where the parents look after the child more-or-less themselves. There are no time limits for the duration of the stay… Only when the parents feel safe and do well, and agree, the child will be discharged at home. (CA Austria)

The second OT ‘discharge coordination’ emerged from data from a number of countries who provided examples of support offered to enhance family preparedness for transitioning to home. Central to this was the role of a Discharge Coordinator, who was identified as being the central point of communication and planning at the acute community interface, for specialist medical and nursing input, and for technical support and allied health input prior to discharge. In terms of specialist medical and nursing input, this refers to linking the acute care team with the community care team, to ensure the community care team would have a full picture of the clinical care needs of the child transitioning to home. In addition the discharge coordinator would ideally be responsible for ensuring all the technical support is appropriately planned and in place prior to the child’s discharge from hospital.

This GT emerged as CAs emphasised the need for access to care for children assisted with LTV, and their families, to specialist services once discharged. Repeatedly there was concern expressed about the inequity in the provision of specialist care, in that pathways to care rarely existed. The GT emerged from two OTs ‘access to specialist unscheduled and urgent care’ and ‘pathway to non-urgent care’ (Fig. 2). Timely access to specialist unscheduled care was identified as critical to the safe and effective care of the child assisted with LTV. In the data returned this was referred to as the ability of families to access a Pediatric Intensive Care Unit (PICU) and a Paediatric Emergency Department (PED) 24/7. The need for a pathway for care, where the parameters for access were clearly understood was identified as critical to support this. In the event of a child having significant respiratory dysfunction immediate access to a PICU was identified as optimum. The OT ‘pathway to non-urgent specialist care’ emerged from four basic themes (BTs): monthly specialist home visit, psychological and psychiatric support, hospice and respite care, and complex care centres. CAs identified a need for a clear pathway for parents to access this support in the community from healthcare, allied healthcare and social care professionals. A number of CAs identified facilitators of optimum non-urgent access as depicted here:

There is a system called home visitation: medical staff consisting of one intensivist or paediatrician and an enrolled anaesthesiology nurse visits the child on a monthly basis. During this visits not only the tube replacement takes place, but a set of consultations happen. Community caretakers are highly advised to attend, and welcomed, to meet the hospital staff in place. (Hungary)

There was considerable concern expressed about the absence of respite care available for children on LTV. CAs reported the importance for families to have enhanced access to respite care, either in an unscheduled capacity where there may be a family crisis, or as non-urgent care, to provide respite for the child and family. The establishment of complex care centres was identified as an optimum way forward to enhance holistic care of the child on LTV and their families, to support access and availability to a wide variety of health and social care professionals. An example of this was provided by the CA from Bulgaria who described what was being developed in their country:

…centres for complex care for children with disabilities and chronic diseases are organisations in which medical and non-medical specialists perform at least one of the following activities: support of the families of children with disabilities and chronic diseases for prescribing and performing early diagnosis, treatment and medical and psychosocial rehabilitation; long term treatment and rehabilitation of children with disabilities and chronic diseases and education of parents for home-care; providing visits of medical specialists for specialised care of children with disabilities and severe chronic diseases, who are looked after at home or at social care residential home; providing specialised palliative care for children.

The GT ‘legal, policy and governance structures’ emerged from four OTs: ‘infrastructure’, ‘standards for care delivery’, ‘legal status’ and ‘advocacy’ (Fig. 3). The OT ‘infrastructure’ emerged from data provided by the CAs on key issues that influence the opportunities for optimum integration of care at the acute community interface. These included geographical variation in access to care, challenges with transport and difficulties with volunteer support. Many countries highlighted concern about inequity in access to care for children on LTV. The CAs reported that resource allocation to support care for children on LTV can vary according to funding in different geographical areas and they also highlighted that access to specialist care, to support the child transitioning to home, varied considerably between urban and rural locations. In some cases this would mean that if a child lived outside an urban centre the family may not be able to access sufficient care for their child to live at home. Challenges were also identified regarding the transport of children assisted with LTV regardless of the child’s geographical location, with ambulances often too small for the ventilation material.

The OT ‘standards of care delivery’ emerged from three BTs: governance of care in the home, national strategy and data access and communication. The issue of governance of care in the home emerged a number of times in comments from the CAs. The majority of CAs reported a number of challenges in governance of care in the home including lack of governance of care agencies and inadequate education of nursing and care staff to care for a child on LTV in the home. This challenge was explained by some CAs by the fact that the number of children on LTV in their country was not very high, and thereby the experience of caring for them was limited. Lack of available clinical expertise in this area was also attributed to an overall shortage of healthcare professionals in many countries.

The majority of CAs suggested that a national strategy on the management of children assisted with LTV was required to address many of the issues raised. However, they highlighted that at present there is a predominant absence of such a strategy or any associated standards of care. The consequences of the absence of such a strategy or standards of care were explained further by a number of CAs. This included no standardised needs-assessment or re-assessment for children and their families. It was also highlighted in a number of CA responses that the child’s legal status was important in facilitating integration of care delivery. This included where the child had official disability status and where there was a legal right established in a country affording right to long-term care for patients with respiratory problems.

The role of non-governmental organisations (NGOs) was identified as a very important facilitator for integration of care at the acute and community care interface, by virtue of the many roles they can play in supporting optimum care delivery. Examples of the supportive role of NGOs included: fundraising to support state funding for care delivery; volunteers and staff from NGOs to organise and deliver care to children assisted with LTV and their families; and acting as advocates for the needs of these families. However, in a number of countries CAs reported no system of volunteers or charity organisations to provide care or support for children on LTV and their families. This was identified as a significant barrier to the provision of care for this population.