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Study aims
Primary aim
To identify the cross-organisational, organisational and individual factors in NHS hospitals that facilitate or prevent children with LD and their families receiving equal access to high-quality care and services.
Secondary aim
To develop guidance for NHS trusts about the implementation of successful and effective measures to promote equal access for children with LD and their families.
Research questions
From the perspectives of families and clinical staff
- Do children with and children without LD and their families have equal access to high-quality hospital care that meets their particular needs?
- Do children with and children without LD, assisted by their families, have equal access to hospital appointments, investigations and treatments?
- Are children with and children without LD and their families equally involved as active partners in their treatment, care and services?
- Are children with and children without LD and their families equally satisfied with their hospital experience?
- Are safety concerns for children with and children without LD the same?
- What are the examples of effective, replicable good practice for facilitating equal access to high-quality care and services for children with LD and their families at the study sites?
- What indicators from the data and the literature suggest that the findings may be generalisable to other children with long-term conditions in the hospital setting?
Theoretical framework
We took a systematic approach to an empirical identification of the factors that affect access to high-quality hospital care for children with LD and their families. Building on the work of Tuffrey-Wijne et al.,32 we devised a provisional theoretical framework for understanding the range of factors at the cross-organisational, organisational and individual levels that might have an impact on the delivery of hospital care to children with LD and their families (Figure 1). This framework was informed by a synthesis of existing policy and literature (see Report Supplementary Material 1) and the wide-ranging expertise and experience of the multidisciplinary research team. Organisational and individual domains of the theoretical framework are indicated in boxes A, B, C and D (see Figure 1). Each box contains a number of factors within each domain that might function as barriers to, or facilitators of, promoting equal access to high-quality hospital care for children with LD and their families in NHS hospitals. Included are outcomes that might be associated with effective measures for promoting equal access. Having tested and refined the theoretical framework throughout the study, it is re-presented in Chapter 12 as an empirical framework for promoting equal access to high-quality hospital care for children with LD and their families.
FIGURE 1 Theoretical framework. LDLN, learning disabilities liaison nurse. (Figure not reproduced here; see the original article.)