Family involvement in advance care planning for people living with advanced cancer: A systematic mixed-methods review

Background: Advance care planning is important for people with advanced cancer. Family involvement in advance care planning may be instrumental to achieving goal-concordant care since they frequently become surrogate decision-makers. Aim: To examine components, contexts, effects and linkages with intended outcomes of involving family members in advance care planning. Design: A mixed-methods systematic review, in which quantitative and qualitative data were extracted and synthesised using thematic synthesis leading to a logic model. Prospectively registered on PROSPERO (CRD42020208143). Data sources: Primary quantitative and qualitative research regarding family-involved advance care planning for people with advanced cancer were identified using Medline, Embase, PsycINFO and CINAHL from inception to September 2020. Quality appraisal was performed with ‘QualSyst’. Results: Fourteen articles were included. The synthesis identified perceptions of individuals and family members concerning family involvement in advance care planning and presents components for family-integrated advance care planning intervention. The logic model includes (i) addressing family members’ concerns and emotions and (ii) facilitating communication between individuals and family members which are distinctive when healthcare professionals engage with individuals as well as family members. Conclusions: This review provides a comprehensive understanding of family involvement in advance care planning and could inform its assessment and implementation in clinical practice. The number of included articles was limited. Therefore future research must focus on family integration and exploration of stakeholders’ perceptions to identify additional components and linkages between them within family-integrated advance care planning.

The Impact of Restrictive Family Presence Policies in Response to COVID-19 on Family Integrated Care in the NICU: A Qualitative Study

Objectives: To conduct a needs assessment with families and their healthcare team to understand the impact of restrictive family presence policies in the neonatal intensive care unit (NICU) in response to COVID-19. Background: In response to the COVID-19 pandemic, significant restrictive family presence policies were instituted in most NICUs globally intended to protect infants, families, and HCPs. However, knowledge on the impact of the stress of the pandemic and policies restricting family presence in the NICU on vulnerable neonates and their families remains limited. Methods: Individuals were eligible to participate if they were a caregiver of an infant requiring NICU care or a healthcare provider (HCP) in the NICU after March 1, 2020. Semi-structured interviews were conducted using a virtual communication platform, and transcripts were analyzed using inductive thematic qualitative content analysis. Results: Twenty-three participants were interviewed (12 families and 11 HCPs). Three themes emerged: (1) successes (family-integrated care, use of technology), (2) challenges (lack of standardized messaging and family engagement, impact on parental wellbeing, institutional barriers, and virtual care), and (3) moving forward (responsive and supportive leadership). Conclusions: Our findings highlight the significant impact of family restrictions on the mental well-being of families, physical closeness with parents, and empathetic stress to HCPs. Further study of potential long-term impact is warranted.

Effectiveness of Alberta Family-Integrated Care on Neonatal Outcomes: A Cluster Randomized Controlled Trial

Family-Integrated Care (FICare) empowers parents to play an active role as a caregiver for their infant in the neonatal intensive care unit (NICU). This model of care is associated with improved neonatal outcomes, such as improved weight gain and higher breastfeeding rates at discharge in infants admitted to level III NICUs; however, its effectiveness in level II NICUs remains unproven. The objective of this study was to evaluate the effectiveness of the model on neonatal outcomes in a cluster randomized controlled trial conducted in 10 level II NICUs randomized to Alberta FICare or standard care. Mothers and their preterm infants born between 32+0 and 34+6 weeks’ gestational age were included. The primary outcome was the proportion of infants who regained their birth weight (BW) after 14 days of life. The analysis included 353 infants/308 mothers at Alberta FICare sites and 365 infants/306 mothers at standard care sites. There was no difference in the proportion of infants who had regained their BW by 14 days between the groups. A lack of perceived improved weight gain trajectory for those in the FICare group is attributed to a shorter length of hospital stay and infants being discharged prior to regaining BW.

Influence of Family Integrated Care on the Intestinal Microbiome of Preterm Infants With Necrotizing Enterocolitis and Enterostomy: A Preliminary Study

The aim of this study was to investigate the influence of family integrated care (FICare) on the intestinal microbiome of preterm infants with necrotizing enterocolitis and enterostomy. This was a prospective pilot study at Beijing Children's Hospital. Premature infants with an enterostomy who met the enrollment criteria were divided into the 2-week FICare and non-FICare groups (non-randomly). We collected their fecal samples and subjected the intestinal microbiomes to 16S rRNA gene sequencing. Operational taxonomic units (OTU) were analyzed to assess the intestinal microbiome richness, and we then carried out α-diversity, β-diversity, and species clustering analyses and a linear discriminant analysis (LDA) effect size (LEfSe) analysis to identify the differences in the microbial communities between the two groups. There were 12 patients enrolled in the study (FICare, n = 7; non-FICare, n = 5). There were no significant between-group differences in demographic characteristics, or in the relative abundances of phyla and genera. The major bacterial phyla were Proteobacteria, Firmicutes, and Actinobacteria, and Serratia, Enterococcus, Cronobacter, and Bifidobacterium dominated at the genus level. The α-diversity analysis indicated that the intestinal flora was more diverse in the non-FICare group than the FICare group (p < 0.05). However, most of the other indicators did not suggest a difference between the two groups. There was a high proportion of shared OTUs between the two groups, and the PCoA and clustering analyses indicated that the two groups were difficult to distinguish, indicating that the intestinal microbiomes were relatively similar between the groups. In summary, short-term FICare had no significant positive effect on the establishment of intestinal flora diversity in premature infants with necrotizing enterocolitis and enterostomy. The trial was registered in the Chinese Clinical Trial Registry (ChiCTR-OPN-17011801).

Facilitators and barriers to implementation of Alberta family integrated care (FICare) in level II neonatal intensive care units: a qualitative process evaluation substudy of a multicentre cluster-randomised controlled trial using the consolidated framework for implementation research

ObjectiveTo evaluate the barriers and facilitators to implementing Alberta Family Integrated Care (AB-FICare [2019 Benzies]), a model of care for integrating parents into level II neonatal intensive care units (NICUs) care teams, from the perspective of healthcare providers (HCP) and hospital administrators.DesignQualitative process evaluation substudy.SettingTen level II NICUs in six cities across Alberta, Canada.ParticipantsHCP and hospital administrators (n=32) who were involved in the cluster-randomised controlled trial of AB-FICare in level II NICUs.MethodsPost-implementation semi-structured interviews were conducted via phone or in-person. The Consolidated Framework for Implementation Research was used to develop interview guides, code transcripts and analyse data.ResultsKey facilitators to implementation of AB-FICare included (1) a receptive implementation climate, (2) compatibility of the intervention with individual and organisational practices, (3) available resources and access to knowledge and information for HCP and hospital administrators, (4) engagement of key stakeholders across the organisation, (5) engagement of and outcomes for intervention participants, and (6) reflecting and evaluating on implementation progress and patient and family outcomes. Barriers were (1) design quality and packaging of the intervention, (2) relative priority of AB-FICare in relation to other initiatives, and (3) learning climate within the organisation. Mixed influences on implementation depending on contextual factors were coded to eight constructs: intervention source, cost, peer pressure, external policy and incentives, staff needs and resources, structural characteristics, organisational incentives and rewards, and knowledge, beliefs and attitudes.ConclusionsThe characteristics of an organisation and the implementation process had largely positive influences, which can be leveraged for implementation of AB-FICare in the NICU. We recommend site-specific consultations to mitigate barriers and assess how swing factors might impact implementation given the local context, with the goal that strategies can be put in place to manage their influence on implementation.Trial registration numberNCT02879799.