Blended feeding in gastrostomy-fed children-A scoping review.

BACKGROUND: Blended feeding has become increasingly prevalent in recent years with its practice gaining some momentum. With anecdotal reports of benefits and little evidence of harm in the literature regarding blended feeding, this scoping review was deemed important. The aim of this scoping review was to summarise the published evidence about blended feeding in gastrostomy-fed children. METHOD: The scoping review methodology used included searches in specific online databases: PUBMED, PsychINFO, CINAHL, SCOPUS, AMED and EMBASE for articles that addressed issues pertaining to blended feeds in gastrostomy-fed children. Grey literature was also considered. Inclusion criteria included papers that pertained to information and research on blended feeding in gastrostomy-fed children. Studies published in English over the past 11 years (2011-2022) were included. This resulted in 59 papers being included in this scoping review. RESULTS: Thematic analysis of the literature identified eight overall themes. It was clear that parents found blended feeding promoted the normalising of feeding, their own involvement in decision-making around foods and promotion of a socially inclusive mealtime. The need for dietician and health professional input and support is key, whereas a lack of guidelines acts as a barrier to blended feeding. Furthermore, risks associated with blended feeding are identified but also the benefits to the physical well-being of the child are considered. CONCLUSION: The review was comprehensive in that it identified a broad range of literature, exploring the extent, range and nature of research activity related to the use of blended feeds. The lack of original research is a concern. However, it is expected this review will provide direction for researchers, and in particular inform policy and practitioners working in the field where blended feeds may be an option for gastrostomy-fed children.

Technology solutionism in paediatric intensive care: clinicians' perspectives of bioethical considerations.

BACKGROUND: The use of long-term life-sustaining technology for children improves survival rates in paediatric intensive care units (PICUs), but it may also increase long-term morbidity. One example of this is children who are dependent on invasive long-term ventilation. Clinicians caring for these children navigate an increasing array of ethical complexities. This study looks at the meaning clinicians give to the bioethical considerations associated with the availability of increasingly sophisticated technology. METHODS: A hermeneutic phenomenological exploration of the experiences of clinicians in deciding whether to initiate invasive long-term ventilation in children took place, via unstructured interviews. Data were analysed to gain insight into the lived experiences of clinicians. Participants were from PICUs, or closely allied to the care of children in PICUs, in four countries. RESULTS: Three themes developed from the data that portray the experiences of the clinicians: forming and managing relationships with parents and other clinicians considering, or using, life sustaining technology; the responsibility for moral and professional integrity in the use of technology; and keeping up with technological developments, and the resulting ethical and moral considerations. DISCUSSION: There are many benefits of the availability of long-term life-sustaining technology for a child, however, clinicians must also consider increasingly complex ethical dilemmas. Bioethical norms are adapting to aid clinicians, but challenges remain. CONCLUSION: During a time of technological solutionism, more needs to be understood about the influences on the initiation of invasive long-term ventilation for a child. Further research to better understand how clinicians, and bioethics services, support care delivery may positively impact this arena of health care.

Past, Present and Future: Perspectives on an Oral History of Intellectual Disability Nursing.

Thirty-one participants engaged in this oral history research study aimed at exploring the lived experience of intellectual disability nurses and healthcare assistants' knowledge of the trajectory of intellectual disability nursing over the last 30 years in the Republic of Ireland and England. This paper documents some of these experiences offering perspectives on intellectual disability nursing and what is important for the future. Findings from Ireland consider the nature of intellectual disability services and the registered nurse in intellectual disability. Findings from England focus on opportunities and restrictions in intellectual disability nursing, shared visions, the changing context within which work took place and also the internal and external supports that impacted their roles. It is evident that intellectual disability nurses must be responsive to the changing landscape of service provision and also the requirements for contemporary new roles to meet the changing needs of people with intellectual disabilities.

Expert survey on coverage and characteristics of pediatric palliative care in Europe - a focus on home care.

BACKGROUND: For children with life-limiting conditions home care is a key component of pediatric palliative care. However, poor information is available on service coverage and in particular on country-specific pediatric palliative home care characteristics. The aim of the study was therefore to describe the association between pediatric palliative care coverage and national activities and obtain detailed information on the pediatric palliative home care structure in different European countries. METHODS: Online survey with in-country experts from N = 33 European countries. RESULTS: Pediatric palliative home care (65.6%) represented the most pediatric palliative care units (15.6%) and the least common services. National documents constituted the most widespread national pediatric palliative care activity (59.4%) and were associated with available services. Pediatric palliative home care could be mostly accessed as a service free of charge to families (95.2%) from the time of a child's diagnosis (85.7%). In most countries, oncological and non-oncological patients were cared for in pediatric palliative home care. Only a minority of home care teams covered home-ventilated children. Pediatric palliative home care usually comprised medical care (81.0%), care coordination (71.4%), nursing care (75.0%) and social support (57.1%). Most countries had at least two professional groups working in home care teams (81.0%), mostly physicians and nurses. In many countries, pediatric palliative home care was not available in all regions and did not offer a 24 h-outreach service. CONCLUSIONS: Pediatric palliative care provision in Europe is heterogeneous. Further work on country-specific structures is needed.

Mothers' experiences of giving medicines to children with severe and profound intellectual disabilities-The impact on time.

BACKGROUND: Chronic health conditions experienced by children with severe and profound intellectual disabilities are accompanied by numerous challenges because of the prolonged period over which children take medication and the large number of drugs they take. Mothers experience many challenges in giving medicines, from difficulties in physical administration to manipulation of medication, covert administration and alternative formulations. The aim of this study was to explore mothers' lived experience of giving medicines to children with severe and profound intellectual disabilities. METHODS: A hermeneutic phenomenological approach was used. Semistructured face-to-face interviews and participant diaries were adopted for data collection, resulting in 28 interviews undertaken and 7 diaries completed with mothers of children with severe and profound intellectual disabilities. Van Manen's method for thematic analysis was used for data analysis. RESULTS: The concept of time and the impact of giving medicines were apparent, mothers being 'always on call' and the constant full-time pace of their caring role evident. There was little spontaneity in their lives, dampened by the routine of giving medicines and their caregiving role. The necessity to be prepared and organized was highlighted as important in ensuring children got their medications on time and safely. CONCLUSIONS: This study provides insight into the phenomenon of mothers' lived experience of giving medicines to children with severe and profound intellectual disabilities. It has enabled exploration and familiarity with the lifeworld of mothers and offers meaning on the phenomena of giving medicines. It was concluded that this experience is a relentless and challenging one, yet appears invisible as an element of care in professional discourse. Through addressing the gap in understanding and exploring the meaning of this phenomenon, it may be useful in developing care for mothers and children with severe and profound intellectual disabilities.

The Meaning Given to Bioethics as a Source of Support by Physicians Who Care for Children Who Require Long-Term Ventilation.

The role and potential of bioethics input when a child requires the initiation of technology dependence to sustain life is relatively unknown. In particular, little is understood about the meaning physicians give to bioethics as a source of support during the care of children in pediatric intensive care who require long-term ventilation (LTV). We used a hermeneutic phenomenological approach to underpin the collection and analysis of data. Unstructured interviews of 40 physicians in four countries took place during 2020. We found that elements of trust, communication and acceptance informed the physicians' perceptions of the relationship with bioethics. These ranged from satisfaction to disappointment with their input into critical decisions. Bioethics services have potential to help physicians gain clarity over distressing and complex care decisions, yet physicians perceive the service inconsistently as a means of support. This research provides a sound basis to guide more beneficial interactions between clinicians and bioethics services.

A mixed method study to explore the maternal impact and outcomes of a specialist Building Attachment and Bonds Service (The BABS Study).

Our intent was to explore if maternal anxiety, depression, reflective functioning and level of attachment significantly changed after the Building Bonds and Attachment Service (BABS) Intervention. We measured outcomes for 46 at risk mothers via HADS; MAAS; MPAS and P-PRFQ. Our findings, triangulated with 32 semi structured interviews identified that BABS intervention made a significant difference to participants who were admitted during the antenatal period (Pregnant group: depression 9.63[CI:7.63-11.63; p < 0.001]; anxiety 9.40[CI: 7.56-11.24]; p < 0.001]; reflective functioning 30.78[CI:24.84-36.72; p < 0.001] and maternal attachment 8.78[CI:4.08-13.48]; p 0.001). Suicidal contemplation was prevented for two women. Our conclusions explained the service made a significant difference to the lives of mothers between baseline and post intervention for pregnant mothers with anxiety and depression who struggled to bond with their baby. Appropriate referral may help to increase accessibility to those who may benefit most. Further research needs to test if this care model would be acceptable to culturally diverse populations.

The importance of supportive relationships with general practitioners, hospitals and pharmacists for mothers who 'give medicines' to children with severe and profound intellectual disabilities.

A purposeful sample of 15 mothers of children with severe and profound intellectual disabilities participated in this hermeneutic phenomenological study through interviews and completion of a diary. The aim of the study was to explore mothers' lived experience of 'giving medicines' to children with severe and profound intellectual disabilities. Findings yielded multiple themes, one of which gave insight into the importance of supportive relationships with health professionals. The general practitioner (GP), hospital and pharmacist are key in providing supportive elements to mothers' daily role. Having the support of a helpful GP was key in helping mothers cope on a daily basis for child related queries on illness, getting prescriptions or seeking advice. Accessibility to the hospital and avoiding the emergency department with their child was recommended. The pharmacist was central to the daily activities relating to 'giving medicines' and a good relationship resulted in a happier mother.

A systematic concept analysis of 'technology dependent': challenging the terminology.

There are an increasing number of children who are dependent on medical technology to sustain their lives. Although significant research on this issue is taking place, the terminology used is variable and the concept of technology dependence is ill-defined. A systematic concept analysis was conducted examining the attributes, antecedents, and consequences of the concept of technology dependent, as portrayed in the literature. We found that this concept refers to a wide range of clinical technology to support biological functioning across a dependency continuum, for a range of clinical conditions. It is commonly initiated within a complex biopsychosocial context and has wide ranging sequelae for the child and family, and health and social care delivery.Conclusion: The term technology dependent is increasingly redundant. It objectifies a heterogenous group of children who are assisted by a myriad of technology and who adapt to, and function with, this assistance in numerous ways. What is Known: • There are an increasing number of children who require medical technology to sustain their life, commonly referred to as technology dependent. This concept analysis critically analyses the relevance of the term technology dependent which is in use for over 30 years. What is New: • Technology dependency refers to a wide range of clinical technology to support biological functioning across a dependency continuum, for a range of clinical conditions. It is commonly initiated within a complex biopsychosocial context and has wide-ranging sequelae for the child and family, and health and social care delivery. • The paper shows that the term technology dependent is generally portrayed in the literature in a problem-focused manner. • This term is increasingly redundant and does not serve the heterogenous group of children who are assisted by a myriad of technology and who adapt to, and function with, this assistance in numerous ways. More appropriate child-centred terminology will be determined within the TechChild project.

Medication management in intellectual disability settings: A systematic review.

There is a high level of medication usage among people with intellectual disability due to the presence of significant morbidity and co-morbidities. This review sought to explore medication management and administration in intellectual disability settings, identifying frameworks for practice, analysing whether collaborative practice led to better outcomes, identifying key processes associated with practice, locating tools to support practice and describing metrics for outcome measurement. A systematic review was conducted with analysis of 64 sources which remained following screening and appraisal. Limited evidence was identified with some insight into the processes underpinning medication management and administration. No assessment tools were found, but two potential outcome measures, adherence and errors, were noted. The paucity of guidelines and frameworks is concerning as this is a complex area of practice. There is a need for further practice development and research to be undertaken that takes note of the unique issues that can present in intellectual disability settings.

Children's complex care needs: a systematic concept analysis of multidisciplinary language.

Complex care in the arena of child health is a growing phenomenon. Although considerable research is taking place, there remains limited understanding and agreement on the concept of complex care needs (CCNs), with potential for ambiguity. We conducted a systematic concept analysis of the attributes, antecedents, and consequences of children's CCNs from a multidisciplinary perspective. Our data sources included PubMed, Cumulative Index to Nursing and Allied Health Literature, and PsycINFO. Inclusion criteria included publications in peer-reviewed journals between January 1990 and December 2017, written in the English language. One hundred and forty articles were included. We found that children's CCNs refer to multidimensional health and social care needs, in the presence of a recognized medical condition or where there is no unifying diagnosis.Conclusion: Children's CCNs are individual and contextualized, are continuing and dynamic, and are present across a range of settings, impacted by family and healthcare structures. There remain extensive challenges to caring for these children and their families, precluding the possibility that any one profession can possess the requisite knowledge or scope to singularly provide high-quality competent care. What is Known: • Complex care is a growing phenomenon and population prevalence figures show that there is an increasing number of children with complex care needs (CCNs). However, the concept has not been systematically analyzed before, leaving it generally ill-defined and at times confusing. What is New: • This is the first time this concept has been systematically analyzed and this analysis provides a much-needed theoretical framework for understanding the multidimensional nature of CCNs in children. • Children's CCNs refer to multidimensional health and social care needs in the presence of a recognized medical condition or where there is no unifying diagnosis. They are individual and contextualized, are continuing and dynamic, and are present across a range of settings, impacted by family and healthcare structures. It is clear that the very nature of CCNs precludes the possibility that any one profession or discipline can possess the requisite knowledge or scope for high-quality competent care for this population.

Development of the key performance indicators for digital health interventions: A scoping review.

Background: Digital health interventions offer new methods for delivering healthcare, with the potential to innovate healthcare services. Key performance indicators play a role in the evaluation, measurement, and improvement in healthcare quality and service performance. The aim of this scoping review was to identify current knowledge and evidence surrounding the development of key performance indicators for digital health interventions. Methods: A literature search was conducted across ten key databases: AMED - The Allied and Complementary Medicine Database, CINAHL - Complete, Health Source: Nursing/Academic Edition, MEDLINE, APA PsycINFO, EMBASE, EBM Reviews - Cochrane Database of Systematic Reviews, EBM Reviews - Database of Abstracts of Reviews of Effects, EBM Reviews - Health Technology Assessment, and IEEE Xplore. Results: Five references were eligible for the review. Two were articles on original research studies of a specific digital health intervention, and two were overviews of methods for developing digital health interventions (not specific to a single digital health intervention). All the included reports discussed the involvement of stakeholders in developing key performance indicators for digital health interventions. The step of identifying and defining the key performance indicators was completed using various methodologies, but all centred on a form of stakeholder involvement. Potential options for stakeholder involvement for key performance indicator identification include the use of an elicitation framework, a factorial survey approach, or a Delphi study. Conclusions: Few articles were identified, highlighting a significant gap in evidence-based knowledge in this domain. All the included articles discussed the involvement of stakeholders in developing key performance indicators for digital health interventions, which were performed using various methodologies. The articles acknowledged a lack of literature related to key performance indicator development for digital health interventions. To allow comparability between key performance indicator initiatives and facilitate work in the field, further research would be beneficial to develop a common methodology for key performance indicators development for digital health interventions.

Respite Care for Children with Complex Care Needs: A Literature Review.

Children with complex care needs form a diverse population with a variety of health and social care requisites in the presence of a range of complex symptoms and diagnoses. An exploratory literature review with a systematic search of the current qualitative literature was undertaken to explore parents' perceptions and evaluation of respite care services for children with complex needs. A systematic search was undertaken using a pre-defined search strategy in six databases; CINAHL, EMBASE, PsycINFO, Applied Social Sciences Index & abstracts and Web of Science. Studies were screened using inclusion criteria and eight studies were included in the review. These were analyzed using thematic analysis based on Braun and Clarke framework. Findings identified that there was a limited availability of respite care services for children with complex needs. Parents' perceived that respite was beneficial for themselves, their child and other siblings in the family. Barriers to accessing respite were also identified. It is recommended that respite services should be flexible and appropriate to the family's needs. A combination of in home and out of home services that are responsive to families' needs and are flexible would be optimal. Qualitative research is considered most suitable to obtain the views of parents of children with complex needs. Further research is recommended in this area, particularly in determining how services may improve and what the views of children using the respite services and their siblings are regarding respite.

Parents and health professionals' experiences and perceptions of blended feeding in tube-fed children: a qualitative systematic review protocol.

OBJECTIVE: The objective of this review is to identify and synthesize the best available evidence on parents' and health professionals' experiences and perceptions of blended feeding in tube-fed children in order to promote effective decision-making on its use. INTRODUCTION: Blended feeding is not a new concept, despite the fact that commercial formulas have displaced its use in recent years. As feeding is viewed as an intimate experience between a parent and child, the choice of individualized blended feeds is something to be considered; however, professionals find there is a lack of evidence and discussion to support the use of blended feeding in practice. Therefore, the findings of this review may be beneficial, especially for professionals, and inform or promote more effective decision-making on the use of blended feeding. INCLUSION CRITERIA: This review will consider studies that investigate parents and/or health professionals' experiences and perceptions of total or partial blended feeding in tube-fed children. Studies published in English that focus on qualitative data will be considered. There will be no restrictions on year or publication. METHODS: The key information sources to be searched are: CINAHL Complete, MEDLINE, PsycINFO, Embase, Web of Science, WHO Library Database (GIM), and Google Scholar, along with several sources of gray literature. Two reviewers will independently screen titles and abstracts against the inclusion criteria, and will retrieve full text studies, assess methodological quality, and extract data. Findings will be pooled using meta aggregation, and a ConQual Summary of Findings will be presented. SYSTEMATIC REVIEW REGISTRATION NUMBER: PROSPERO (CRD42020160357).

Enhancing care of children with complex healthcare needs: an improvement project in a community health organisation in Ireland.

BACKGROUND: Integration of care for children with complex care needs is developing slowly internationally. There remains wide variation in the governance of, and access to, care for these children and their families. LOCAL PROBLEM: There was a need to develop a service that would have a specific remit for organising the overall management and governance of the care of these children in the community. METHOD: A bespoke model was established specifically to support the needs of children with complex healthcare needs (CHNs). The sole focus of the team is to provide the highest standard of care to these children and their families, and to enable families to remain central to decision-making. INTERVENTION: The service for children with CHNs was established in August 2017 with the appointment of a service manager and case managers. A comprehensive training and education programme was put in place to support care to the children and their families. RESULTS: The service is viewed as delivering high-quality care. Parents and stakeholders highlighted the value placed within the service on individualised care, specialist knowledge and the importance of advocacy. CONCLUSIONS: The model recognises the exceptional lives these children and families live, given the complexities and challenges they have to overcome on a daily basis. The team have built a specialist knowledge and skill set in supporting families and others involved in the care of the child, as they are solely employed and dedicated to the provision of care to children with CHNs. The corporate governance structures seem strong and stand up to scrutiny very well in terms of parents' and stakeholders' perspectives and in the context of published international best practice.

Increasing the Focus on Children's Complex and Integrated Care Needs: A Position Paper of the European Academy of Pediatrics.

There is wide variation in terminology used to refer to children living with complex needs, across clinical, research and policy settings. It is important to seek to reconcile this variation to support the effective development of programmes of care for this group of children and their families. The European Academy of Pediatrics (EAP) established a multidisciplinary Working Group on Complex Care and the initial work of this group examined how complex care is defined in the literature. A scoping review was conducted which yielded 87 papers with multiple terms found that refer to children living with complex needs. We found that elements of integrated care, an essential component of care delivery to these children, were repeatedly referred to, though it was never specifically incorporated into a term to describe complex care needs. This is essential for practice and policy, to continuously assert the need for integrated care where a complex care need exists. We propose the use of the term Complex and Integrated Care Needs as a suitable term to refer to children with varying levels of complexity who require continuity of care across a variety of health and social care settings.

Education of children's nurses in Ireland: an update.

The first teaching hospital for sick children in Great Britain and Ireland opened in Dublin in 1821. From then, the development of sick children's nursing in Ireland followed a similar path to that in many other countries until a national report in 2000 recognised that post-registration pathways alone were unlikely to meet future health service needs for suitably qualified and flexible children's nurses. In 2006, a four-and-a-half-year integrated children's and general nursing pre-registration degree programme started on four sites. At the same time, the existing 18-month post-registration course was replaced with an accelerated one-year diploma programme. The full integration of children's nursing into third level at both pre- and post-registration level was a welcome development in Ireland. Further work is under way to address the remaining educational challenges: post-graduate and doctoral programmes, preparation of advanced nurse practitioners and continuing professional education for qualified children's nurses.

Methods of continuing professional education preferred by Irish pediatric nurses.

PURPOSE: To explore the continuing professional education (CPE) of pediatric nurses in Ireland and establish if and in what ways pediatric nurses are taking part in CPE as well as factors that might assist or hinder pediatric nurses in undertaking CPE. DESIGN AND METHODS: A stratified random sample of 205 registered children's nurses (RCNs) completed a questionnaire. RESULTS: RCNs in Ireland use a variety of methods of CPE, the most popular being journal reading, while the least popular method is the use of computerized journal databases and the internet. Many RCNs appear to lack the computer skills necessary to utilize these methods of CPE. PRACTICE IMPLICATIONS: The favored methods of CPE by RCNs need to be utilized and promoted in the practice setting in order to ensure RCNs are up to date in the provision of quality care to pediatric patients.

Developing an information leaflet on 22q11.2 deletion syndrome for parents to use with professionals during healthcare encounters.

PURPOSE: The purpose of this project was to gather parents' expertise to inform an educational leaflet for parents to share with professionals caring for children with 22q11.2 deletion syndrome (22q11.2 DS). DESIGN AND METHODS: A mixed-method design was adopted. Data were collected by one focus group interview (n = 8) and questionnaires with 92 other parents of children with 22q11.2 DS. RESULTS: Quantitative and qualitative responses informed the development of an information leaflet. PRACTICE IMPLICATIONS: Parents are well positioned to assist in development of information leaflets that can minimize "repeated storytelling" during professional encounters.