Developing a community based service model for disability: Listening to the needs of all beneficiaries and providers

1. Overview

Based on the European Registry database (EUROCAT), the average live birth prevalence of NTD was found to be 0.9 per 1,000 in 2009 to 1.17/1,000 in 2011 in Ireland. Relatively high live birth prevalence were found in Malta (0.8 per 1,000), Ireland (0.5 per 1,000) and Poland (0.6 per 1,000) [3]. In Ireland Eurocat data points to an average of 10.15 of NTD per 10000 with 5.61 specifically with a spina bifida diagnosis in 2015 [4]. On average 34 children are born with SB in Ireland every year with an estimated 500 children living with the condition [2].

A national study which examined access to services for children with SB was conducted by Temple Street Children’s University Hospital Dublin where all SB children are born. The study showed that 54% of SB the do not have access to a multidisciplinary team clinic despite the fact that 69% of children with SB over three years use a wheelchair, 93% of them over five years require continence support and 64% of them have a VP shunt to manage hydrocephalus [2].

In planning a service model that has a regional focus in Ireland, it was necessary to access the experiences of a range of service users and providers. Through a participatory engagement process, the views of SB individuals, their families and providers were gathered. Crann’s intention was to assess need and directly respond through strategic decision making. An operationalised plan of supports would be based on these needs, taking account of SB children, adults, families and providers. Crann is committed to implementing supports that are recognised as being international standards of practice and care for individuals in the SB community.

2. Method

The following questions underpinned the needs assessment study;

What are the ‘unmet’ needs of individuals with SB and their family members in this region?

Ethical protocols were developed and implemented in the study. A deliberate scoping of potential stakeholder groups who could contribute to service planning resulted in 159 individuals being recruited (Table 1). Standardised schedules were developed for one to one interviews and focus groups. Online surveys were made available for adults and children with SB and their family members. Data collection was completed across a 6 month period.

The Framework Method, a form of thematic analysis was used to guide the systematic identification of commonalities and differences in the information retrieved. This method of qualitative data analysis robustly managed the voluminous nature of the number of in depth interviews conducted. A series of reductive processes resulted in codes and categories being generated (Table 2). These thematically summarised a range of responses which reflected different stakeholder experiences of receiving SB supports in Ireland and the local region. Identified needs were rooted in the recognition of significant gaps in service provision and requisite supports that would improve quality of life for the individual with SB and their family members.

When asked a set of questions about quality of life and resilience, children and young people (aged 7–17) responses suggested a high degree of self-confidence and positivity about their disability. Overall there was a positive skew in responses where children did not feel afraid that their condition would get worse, were not sad because of SB, did not mind if people noticed their disability and did not miss opportunities at school because of SB. The role of children as peer educators was suggested. Children stated that having the perspective of young adults could provide valuable inputs to children’s services based on their own recent experiences.

Sixty percent of siblings who contributed to the research felt they ‘had been a great help’ in caring for their sibling with a disability. Equally, 60% reported ‘missing out on things because of the level of commitment of care required by their sibling’.

Parental experiences were defined by high levels of stress. This arose from lack of information, intermittent scheduling of appointments, lack of sufficient services and limited choices around supports such as training and education. Parents expressed a strong sense of isolation and having to navigate multiple systems without assistance. Despite ongoing efforts to respond to the changing needs of their child, parents reported they not have access to services that mitigated these high levels of stress.

Providers requested opportunities for practice development through international knowledge exchange. This was cited as an instrumental to implement best practice guidelines in SB within the professional community in Ireland. Through shared learning of current innovations, providers acknowledged the role this would play in improving care delivery to individuals with SB across the country.

Using the framework method of analysis, a model of community based provision for SB individuals, families and providers emerged with requests for:

Tailored education programs

SB individuals and families described their experiences of services and supports in terms of scarcity. From receiving a diagnosis of SB families talked about a dearth in information available to educate them around the condition. A self navigated journey in accessing care and supports unfolded from birth to childhood through adolescence to adulthood. This was a pattern that typified parental experiences of those who contributed to the research. In response, Crann could offer a coordinated information hub where evidence based and best practice recommendations are put forward to the SB community. Participants requested supports be made available that promote self-awareness, independence and resilience for SB children and adults.

Recognising the individuality of a person with a disability was a critical issue raised by children, families and adults with SB. This means not applying a singular definition of disability to SB. The research indicates that Crann is being asked to develop a model of service provision that values the whole person rather than having demarcation solely by disability. In doing so, the Centre would offer supports to a range of prevailing issues that are cross cutting in determining quality of life, health and wellbeing to SB community from pre-birth to adulthood.

Recommendations put forward by stakeholders in the research include; parent education programs, emotional support groups and targeted activities at critical transition times. Providers highlighted the need for shared learning and education to facilitate the delivery of internationally recognised best practice in SB treatment.

5. Conclusion

This is study is the first of its kind in Ireland and despite a deliberate geographical focus it offers insight into the experiences of SB children, adults and their families. High levels of need across multiple domains of life. A key message was the significance of creating a service that broadens traditional thinking about disability beyond the biomedical dimensions of SB. This requires Crann to develop a model that aims to promote activity and participation in daily life activities through the lifespan. This would mean Crann offering supports that enable a child or adult to function and engage to the best of their ability, whatever that might look like. In this regard, the Crann project’s strategic directive is to facilitate pathways to thriving with SB. The Crann Centre intends to respond directly to these needs through guidance from international best practice and standards.