Challenges and best practices for recruiting families of children with intellectual disabilities for health research.

Research focused on children with intellectual disabilities has been of increasing interest over the last two decades. However, a considerable lag in the amount of research that is representative and generalizable to this population in comparison to neurotypical children remains, largely attributed to issues with participant engagement and recruitment. Challenges and barriers associated with engaging and recruiting this population include lack of research to provide a sound foundation of knowledge, ethical considerations, parental attitudes, family commitments, and organizational gatekeeping. Researchers can engage children and their families using participatory research methods, honouring the child's right to assent, and collaborating with parents. Recruitment strategies include partnering with organizations, working with parent and patient partners, and using remote methods. Employing evidence-informed engagement and recruitment strategies may provide substantial social and scientific value to the research field by ensuring that this underrepresented population benefits equitably from research findings.

Parental Perspectives on Impact of Parental Presence Restrictions in the Neonatal Intensive Care Unit During the COVID-19 pandemic: A Cross-Sectional Study.

PURPOSE: To describe parental experiences in the neonatal intensive care unit (NICU) during the COVID-19 restrictions. We explore what parents found most challenging, the impact these restrictions had on them and their infant, and how they coped. METHODS: A cross-sectional online survey was completed by parents of infants who required care in a Canadian NICU during the early period of the COVID-19 pandemic. Data from 3 questions were coded using thematic analysis. RESULTS: Participants ( n = 161) were primarily mothers (93%), with an average length of stay of 32.1 days. Three themes were identified from responses: (1) emotional and physical closeness of the parents to their infant; (2) physical and psychosocial well-being of the infant and parent; and (3) how parents coped, and strategies for moving forward. Parents reported that parental restriction policies adversely impacted their perceived physical and emotional closeness with their infant and their infant's physical and psychosocial well-being. Parents reported that being able to be present with their infant, having their partner able to be present with them, and effective communication helped them cope. CONCLUSION: Despite the need for some restrictive policies to control the spread of the virus, the benefits and risks to the overall well-being of the parents and infants must be weighed.

Receiving a Prenatal or Postnatal Diagnosis of (Dis)Ability: The Role and Importance of the Nurse.

ABSTRACT: The phenomenon of carrying and birthing an infant with a (dis)ability is complex and emotionally driven for parents. Infants with (dis)abilities are at risk for long-term health and developmental challenges, which may cause fear and stress in families. Parents report dissatisfaction with their experience of learning of their infant's (dis)ability diagnosis. After unexpected news is given to expecting or new parents prenatally or postnatally, it is the nurse who is often left with parents during an extremely emotional and vulnerable time. Although nurses play a pivotal role in supporting parents through this vulnerable time, their specific role is not well defined. This narrative synthesis reviews the role of the nurse during complex family situations and applies findings to their role in supporting families through receiving the diagnosis of a (dis)ability for their infant either prenatally or postnatally. Nurses can assist parents through this process of adaptation by using a compassionate and empathetic approach in their care, facilitating opportunities for parent-infant bonding, speaking with person-first language, clarifying complex information, and assisting with allocation of various internal and external resources. Future research dedicated to the creation of best practice clinical guidelines on communicating with families during the diagnosis of (dis)ability would assist nurses and other health care professionals in meeting the multifaceted and sensitive needs of parents and families, ultimately contributing to improved health outcomes for the parents, family, and infant.

Pain in Neonates: Perceptions and Current Practices.

All newborns experience pain during routine care, which can have long-lasting negative effects. Despite the availability of effective methods to prevent and reduce pain, most infants will receive ineffective or no treatment. Optimal pain management includes the reduction of the number of procedures performed, routine pain assessment and the use of effective pain-reducing interventions, most notably breastfeeding, skin-to-skin contact and sweet-tasting solutions. Parents are an essential component of the comprehensive assessment and management of infant pain; however, a gap exists regarding the uptake of parent-led interventions and the engagement of families. Practice recommendations for infant pain care are discussed.

Nursing-sensitive outcomes for the provision of pain management in pediatric populations with intellectual disabilities: a scoping review protocol.

OBJECTIVE: This aim of this review is to identify and map nursing-sensitive outcomes for the provision of pain management in pediatric populations with intellectual disabilities that are currently reported in the literature. INTRODUCTION: The experience of pain is highly individualized and subjective, with physiological, biochemical, and psychological differences contributing to pain perception. Pediatric populations with intellectual disabilities are at increased risk of ubiquitous pain exposure. Pain management effectiveness can be determined through the measurement of nursing-sensitive outcomes, which have not been mapped in the context of pediatric populations with intellectual disabilities. INCLUSION CRITERIA: Quantitative, qualitative, mixed methods, and gray literature discussing nursing pain management in pediatric populations with intellectual disabilities will be included. No date limits will be applied. Only studies published in English will be considered. METHODS: This review will be guided by the JBI methodology for scoping reviews. The search strategy will aim to locate published and unpublished literature using the databases CINAHL (EBSCOhost), MEDLINE (Ovid), Embase (Ovid), Scopus, PsycINFO (ProQuest), LILACS, SciELO, and ProQuest Dissertations and Theses Global. Titles and abstracts, and then full-text studies, will be selected and reviewed by 2 independent researchers against the inclusion criteria. Content analysis using the NNQR-C, C-HOBIC, NDNQI, and Donabedian model frameworks will be used for data extraction and organization, accompanied by charted results and narrative summaries, as appropriate.

Recent innovations in long-term care coverage and financing: a rapid scoping review.

OBJECTIVES: To identify, chart and analyse the literature on recent initiatives to improve long-term care (LTC) coverage, financial protection and financial sustainability for persons aged 60 and older. DESIGN: Rapid scoping review. DATA SOURCES: Four databases and four sources of grey literature were searched for reports published between 2017 and 2022. After using a supervised machine learning tool to rank titles and abstracts, two reviewers independently screened sources against inclusion criteria. ELIGIBILITY CRITERIA: Studies published from 2017-2022 in any language that captured recent LTC initiatives for people aged 60 and older, involved evaluation and directly addressed financing were included. DATA EXTRACTION AND ANALYSIS: Data were extracted using a form designed to answer the review questions and analysed using descriptive qualitative content analysis, with data categorised according to a prespecified framework to capture the outcomes of interest. RESULTS: Of 24 reports, 22 were published in peer-reviewed journals, and two were grey literature sources. Study designs included quasi-experimental study, policy analysis or comparison, qualitative description, comparative case study, cross-sectional study, systematic literature review, economic evaluation and survey. Studies addressed coverage based on the level of disability, income, rural/urban residence, employment and citizenship. Studies also addressed financial protection, including out-of-pocket (OOP) expenditures, copayments and risk of poverty related to costs of care. The reports addressed challenges to financial sustainability such as lack of service coordination and system integration, insufficient economic development and inadequate funding models. CONCLUSIONS: Initiatives where LTC insurance is mandatory and accompanied by commensurate funding are situated to facilitate ageing in place. Efforts to expand population coverage are common across the initiatives, with the potential for wider economic benefits. Initiatives that enable older people to access the services needed while avoiding OOP-induced poverty contribute to improved health and well-being. Preserving health in older people longer may alleviate downstream costs and contribute to financial sustainability.