Figure - available from: Journal of Advanced Nursing
This content is subject to copyright. Terms and conditions apply.
Source publication
Aim
To understand what constitutes a good experience of care for inpatient children and young people with intellectual disability as perceived by nursing staff.
Design
Interpretive qualitative study.
Methods
Focus groups with clinical nursing staff from speciality neurological/neurosurgical and adolescent medicine wards across two specialist tert...
Citations
... The primary subthemes identified in qualitative studies revolve around the experiences of families and children (Douglas et al., 2016;Hurley & Hutchinson, 2022;Lacono et al., 2014;Mimmo et al., 2022). In addition, there is a blend of other themes encompassing workforce development (Goddard et al., 2010;Hemsley et al., 2011Hemsley et al., , 2012, including professional standards . ...
... When caring for children or young people with IDs, no specific policies or procedures are currently in place. Policies are needed to support the use of family centred care in their health care (Mimmo et al., 2022). ...
... Research on the hospital experience of people with IDs in Australia is scarce. Only three studies were identified in this review (Douglas Lacono et al., 2014;Mimmo et al., 2022). The hospital experience for children were similar to that of adults with IDs in terms of communication barriers. ...
People with intellectual disabilities (IDs) face significant health challenges, including poor outcomes, limited access to health care, and a 26‐year life expectancy gap compared with the general population. This highlights the need for improved public health and social policies to enhance the quality of care in hospital and community settings. An integrated literature review was conducted to examine the state of disability nursing practice in Australia following the implementation of the National Disability Insurance Support (NDIS) scheme. The review included English‐language studies published from 2010 to 2023. Systematic searches in five databases resulted in a final sample of 28 studies. The data were then thematically analysed, and the following three themes emerged: Workforce development and professional standards, hospital experience and support needs of individuals with IDs, and nursing curriculum and ID. Study findings suggest that nurses lack preparation for effective health communication with individuals with IDs and their families. Evidence is insufficient to guide nursing practice and policies in ID care. Varying understandings of practice standards exist among nurses. Nursing curriculums in Australia fail to adequately prepare students to manage the unique needs of individuals with IDs, perpetuating the high mortality rates in this population. Specialised nursing practice areas are vital for meeting the complex needs of individuals with IDs. Reintroducing a disability nursing specialty and integrating dedicated study units and clinical placements in undergraduate programmes are recommended steps to improve care outcomes and support the overall well‐being of this population.
... For parents/ guardians, understanding this delineation, and therefore their own role within the team was extremely important. This theme has been well documented in the literature [39][40][41][42][43][44]. The existing body of evidence points to roles as being experienced as transient and malleable within the fragmented service structures which embody healthcare currently. ...
Background
Children with medical complexity (CMC) comprise 1% of the paediatric population, but account for over 30% of health service costs. Lack of healthcare integration and coordination for CMC is well-documented. To address this, a deep understanding of local contextual factors, experiences, and family-identified needs is crucial. The aim of this research was to investigate the lived experiences of CMC, their families, and healthcare staff, focusing on understanding the dynamics of care coordination and the challenges faced in providing integrated care, in order to inform the development of effective, family-centred models of care.
Methods
In April to July 2022, 31 semi-structured interviews were conducted with parents/guardians of CMC and healthcare professionals who care for CMC. Interviews explored complex paediatric care and care coordination barriers. An inductive thematic analysis was undertaken. Themes were then further explored using Frank’s narrative approach.
Results
Through analysis, we identified that the restitution typology was absent from both staff and parent/guardian narratives. However, we uncovered narratives reflective of the chaos and quest typologies, depicting overwhelming challenges in managing complex medical needs, and proactive efforts to overcome barriers. Importantly, a novel typology termed ‘equilibrium’ was uncovered. Narratives aligning with this typology described medical complexity as a balance of power and a negotiation of roles. Within the equilibrium typology, illness trajectory was described as a series of negotiations or balancing acts between healthcare stakeholders, before finally reaching equilibrium. Participants described seeking a balance, where their expertise is respected, whilst maintaining the ability to rely on professional guidance and support. These insights provide a nuanced understanding of the multifaceted narratives shaping care experiences for CMC and their families.
Conclusions
Our research delineates multifaceted challenges within the care landscape for CMC, their families, and healthcare staff. Embracing the equilibrium narrative typology highlights the criticality of tailored, integrated care models. This necessitates prioritising clear role delineation and communication among caregivers, implementing support systems addressing the challenges of continuous caregiving, and integrating parents/guardians as essential members of the care team. These insights advocate for pragmatic and sustainable strategies to address the unique needs of CMC and their families within healthcare systems.
... Using one's interpersonal skills to engage with a child assists in making them feel safe and comfortable especially when needing to undergo a procedure or uncomfortable treatments. 44 The ability to successfully establish rapport and provide child-centred care brings job satisfaction and reward, moving staff from fear and uncertainty to joy and self-agency as a paediatric health professional resulting in safer and better care for their patients with intellectual disability. 44 Lack of links to electronic records and information were identified; ones that lead to near misses or adverse events-also cited in literature raising issues of patient safety for children with intellectual disability. ...
... 44 The ability to successfully establish rapport and provide child-centred care brings job satisfaction and reward, moving staff from fear and uncertainty to joy and self-agency as a paediatric health professional resulting in safer and better care for their patients with intellectual disability. 44 Lack of links to electronic records and information were identified; ones that lead to near misses or adverse events-also cited in literature raising issues of patient safety for children with intellectual disability. 47 Improving information linkage and staff access will improve communication and information transfer leading to safer and better care. ...
Objectives
Children with intellectual disability experience patient safety issues resulting in poor care experiences and health outcomes. This study sought to identify patient safety issues that pertain to children aged 0–16 years with intellectual disability admitted to two tertiary state‐wide children's hospitals and a children's palliative care centre; to describe and understand these factors to modify the Australian Patient Safety Education Framework to meet the particular needs for children and young people with intellectual disability.
Design, Setting and Participants
Parents of children with intellectual disability from two paediatric hospitals and a palliative care unit participated in semi‐structured interviews to elicit their experiences of their child's care in the context of patient safety. Thirteen interviews were conducted with parents from various backgrounds with children with intellectual, developmental and medical diagnoses.
Results
Eight themes about safety in hospital care for children and young people with intellectual disability emerged from thematic analyses: Safety is not only being safe but feeling safe; Negative dismissive attitudes compromise safety, quality and care experience; Parental roles as safety advocates involve being heard, included and empowered; Need for purposeful and planned communication and care coordination to build trust and improve care; Systems, processes and environments require adjustments to prevent patient safety events; Inequity in care due to lack of resources and skills, Need for training in disability‐specific safety and quality issues and Core staff attributes: Kindness, Patience, Flexibility and Responsiveness. Parents highlighted the dilemma of being dismissed when raising concerns with staff and being required to provide care with little support. Parents also reported a lack of comprehensive care coordination services. They noted limitations within the healthcare system in accommodating reasonable adjustments for a family and child‐centred context.
Conclusions
The development of an adapted Patient Safety Education Framework for children with intellectual disability should consider ways for staff to transform attitudes and reduce bias which leads to adaptations for safer and better care. In addition, issues that apply to quality and safety for these children can be generalised to all children in the hospital.
Patient and Public Contribution
Parent advocates in the project advisory team were shown the questions to determine their appropriateness for the interviews.
... The findings reiterate the need for proactive identification and planning of reasonable adjustments, in line with the Equality Act (2010), in partnership with the child and their family (Mimmo et al., 2019), so that any adaptations or resources required are in place prior to an admission, rather than being identified after a child has experienced pain or distress. This requires an individualised approach to care, which includes building rapport, understanding past hospital experiences (Mimmo, Hodgins, et al., 2022), how pain is expressed, and allowing sufficient time to prepare the child for tests and procedures and to undertake these (Bates et al. 2019). As noted by Gerth (2020, p101), 'Each child will come in with a unique personality and needs that can be understood by asking and listening, thereby giving the child agency and allowing them to be a crucial part of their own treatment'. ...
Background
There is limited qualitative research focussed specifically on what it is like for children and young people with intellectual disabilities coming into hospital, with much of the evidence‐base being about those with Autism Spectrum Condition or adults with intellectual disabilities.
Aim
To share rich detail of the emotional and physical impact on children and young people with intellectual disabilities of attending hospital, from their own and their parent's perspective.
Methods
Talking Mats interviews, sticker survey and photography with children and young people with intellectual disabilities, and in‐depth interviews, hospital diaries and photography with their parents.
Results and Conclusions
The multiple and compounding layers of complexity surrounding hospital care of children and young people with intellectual disabilities resulted in challenges associated with loss of familiarity and routine, undergoing procedures, managing sensory overload, managing pain and having a lack of safety awareness. An individualised approach to their care is needed.
... Attitudes are one of the biggest barriers for individuals with ID to access services (Lewis et al. 2017). Nurses are required to provide education and care in a professional manner, maintain appropriate guidance and regular follow-ups, and receive sexual education appropriate to their developmental level in cooperation with other health professionals while working with children with ID (Mimmo et al. 2022). ...
Nurses have important responsibilities in the development of health and care services for children with intellectual disabilities. This is because it is usually the nurse who first encounters the child in all kinds of care and treatment services. Barriers to the provision of sexual healthcare by nurses have not yet been clearly discovered. This study aimed to identify the barriers experienced by nurses regarding communication for sexual health education for children with intellectual disabilities. This study was carried out with 19 nurses through in-depth interviews. The thematic analysis method was used for data analysis. Four themes emerged related to barriers in communication for sexual health education for children with intellectual disabilities by nurses as (1) communication of nurses with their patients, (2) communication on an individual level, (3) communication on the family level, and (4) institutional factors. These barriers included the lack of knowledge of children, families, and nurses, insufficient institutional support, attitudes towards sexuality and stigmatization of the family, and the prevention of sexual health education services by the aggressive behaviors of children. It is recommended to provide sexual health education to nurses and families to minimize problems in the sexual health of children with intellectual disabilities. Nurses should also be trained on sexual health policy and how to put it into practice.
Aim
To explore the experiences of partnership nursing among nurses when caring for children and young people with long‐term conditions, and their families.
Background
Partnership nursing is promoted as a positive model of care among paediatric nurses, where shared roles and decision‐making, parental participation, mutual trust and respect, communication and negotiation are valued to create positive care experiences and enhance patient outcomes. Little is known about how nurses use partnership with both the patient and the parents in this triad to deliver partnership nursing.
Design
A qualitative systematic review followed Joanna Briggs Institute meta‐aggregation approach and has been reported according to PRISMA guidelines.
Methods
A comprehensive systematic search was conducted in seven electronic databases. Studies were assessed according to a pre‐determined inclusion criteria. Qualitative findings with illustrative participant quotes were extracted from included studies and grouped into categories to inform overall synthesised findings. Methodological quality assessment was conducted.
Findings
A total of 5837 publications were screened, and 41 qualitative studies were included. Three overarching synthesised findings were identified: (1) Using education to promote feelings of safety and support, (2) Partnering to develop a strong therapeutic relationship and (3) Optimising communication underpinned by shared decision‐making principles to deliver individualised care.
Conclusion
Nurses demonstrated successful partnership in their practice, but focused on developing dyadic nurse–parent and dyadic nurse–child partnerships. Future practice development that creates a three‐way triadic partnership may aid therapeutic relationships and shared decision‐making.
Implications for clinical practice
Clinicians can reflect on how dyadic partnerships (focusing on the child or the parent) may exclude opportunities for coherent care. Further exploration in practice, policy and research as to how nurses determine child competency and child and parent level of engagement in triadic partnership may improve the potential of meaningful shared decision‐making.
Objective
To elicit patient safety issues pertaining to children and young people with intellectual disability in hospital from healthcare staff perspectives. This follows a previous paper of parent interviews of patient safety experiences of their child in hospital.
Design
Qualitative study.
Setting
We conducted semi-structured interviews and focus groups of staff of tertiary children’s hospitals based on the domains of the Patient Safety Education Framework and using the framework methodology for data analysis.
Participants
There were 29 female and 7 male staff aged between 27 and 70 years from a range of departments and specialties including ancillary staff.
Intervention
Questions based on the patient safety framework were developed from consultation with parents, researchers and clinicians exploring staff views and experiences of safety and quality care of these children in hospital. During April 2021 to May 2022, 22 interviews and 3 focus groups were conducted of staff who have had experience caring for children and young people with intellectual disability in the last 12 months in the hospital.
Results
Key themes elicited include Definition of Safety, Need to consider additional vulnerabilities of children and young people with intellectual disability in hospital, Communication is key to safe care, Parent and family perspectives on safe care, Management challenges compromising safety and Service system gaps in preventing, identifying and managing risk .
Conclusions
Staff need to consider additional vulnerabilities, mitigate negative attitudes and biases towards better engagement and relationships with parents, children and young people of this population. Improvement of current systems that prevent the identification, prevention and management of risk and safety issues for this population need to be undertaken. Future developments include combining data from parent interviews, academic and grey literature in developing safety competencies in this population for training and education of staff across the health system.
