Parental Readiness Research Articles

Supporting the delivery of good maternity care for parents with learning disabilities

Background and objectiveDespite directives to improve maternity care in general and to improve care for parents with learning disabilities, the maternity experience of parents with learning disabilities is often poor and lacking reasonable adjustments to care. The objective of this study was to develop resources - in collaboration with key stakeholders - to support the workforce in delivering good maternity care to parents with learning disabilities. DesignA two-phase mixed-methods study. ParticipantsPhase 1: 16 key stakeholders (health and social care professionals, parents with learning disabilities and their informal supporters/carers) were interviewed to understand views of best practice and inform resource development. Phase 2: 20 healthcare professionals engaged with the resources and gave feedback via online survey or discussion group to further refine them. FindingsThematic analysis of key stakeholder interviews indicated that good maternity care for parents with learning disabilities requires a positive and proactive approach to identifying need; reasonable adjustments to communication and providing information; and professionals working together to support and enable parents. Key conclusionsHealth and social care professionals identified barriers to the delivery of good maternity care for parents with learning disabilities, including how to identify whether a parent has learning disabilities. Professionals in maternity services require additional resources to ensure parents’ needs are recognised and they are provided with personalised preparation for parenthood and sufficient support. Implications for practiceThe Together Toolkit and Maternity Passport were coproduced to support the workforce to deliver good maternity care to parents with learning disabilities, these resources are free and accessible for use [https://www.surrey.ac.uk/research-projects/together-project-supporting-delivery-good-practice-maternity-services-parents-learning-disabilities]. Further evaluation will explore acceptability and perceived impact of these resources in maternity services.

A cluster-randomised controlled trial of the LifeLab education intervention to improve health literacy in adolescents.

Adolescence offers a window of opportunity during which improvements in health behaviours could benefit long-term health, and enable preparation for parenthood-albeit a long way off, passing on good health prospects to future children. This study was carried out to evaluate whether an educational intervention, which engages adolescents in science, can improve their health literacy and behaviours. A cluster-randomised controlled trial of 38 secondary schools in England, UK was conducted. The intervention (LifeLab) drew on principles of education, psychology and public health to engage students with science for health literacy, focused on the message "Me, my health and my children's health". The programme comprised: • Professional development for teachers. • A 2-3 week module of work for 13-14-year-olds. • A "hands-on" practical health science day visit to a dedicated facility in a university teaching hospital. Data were collected from 2929 adolescents (aged 13-14 years) at baseline and 2487 (84.9%) at 12-month follow-up. The primary outcome was change in theoretical health literacy from pre- to 12 months post- intervention. This study is registered (ISRCTN71951436) and the trial status is complete. Participation in the LifeLab educational intervention was associated with an increase in the students' standardised total theoretical health literacy score (adjusted difference between groups = 0.27 SDs (95%CI = 0.12, 0.42)) at 12-month follow-up. There was an indication that intervention participants subsequently judged their own lifestyles more critically than controls, with fewer reporting their behaviours as healthy (53.4% vs. 59.5%; adjusted PRR = 0.94 [0.87, 1.01]). We conclude that experiencing LifeLab led to improved health literacy in adolescents and that they demonstrated a move towards a more critical judgement of health behaviour 12 months after the intervention. Further work is needed to examine whether this leads to sustained behaviour change, and whether other activities are needed to support this change.

АНАЛИЗ СОЦИАЛЬНЫХ ПРЕДСТАВЛЕНИЙ О РОДИТЕЛЬСТВЕ У ВЗРОСЛЫХ, ИМЕЮЩИХ И НЕ ИМЕЮЩИХ ДЕТЕЙ

Statement of the problem. Solving the problem of psychological and pedagogical support for parents requires studying the request for psychological assistance from their side. In our opinion, this can be done by studying social ideas of modern parents about various aspects of the parenthood phenomenon. The purpose of the article is to present a comparative analysis of semantic cores of ideas about parenthood in adults with and without children. Materials and methods. The research methodology is represented by the concept of social representations by S. Moscovici, as well as generalized studies in the field of social representations by Russian and foreign scientists (K. A. Abulkhanova-Slavskaya, G. M. Andreeva, E. Yu. Artemyeva, O. E. Baskansky, I. B. Bovina, M. I. Volovikova, T. P. Emelyanova, I. Markova, L. G. Pochebut, P. N. Shikhirev, E. V. Yakimova, J. K. Abrik, P. Verges, D. Jodle). Research results. The core of ideas about parenting in adults with and without children are concepts that reflect emotional and behavioral components of parenthood. According to Russian adults who do not have children, parenthood is a responsible and very complex phenomenon, and this can make them postpone child birth. In the minds of potential parents, there is a fairly idealized image of a parent who has remarkable personal qualities, is understanding, caring, and knows how to raise a model child. This largely explains their references to “not being ready” to be a parent, as well as subsequent dissatisfaction with the experience of parenthood, when the ideal image does not correspond to reality. Conclusion. Differences in understanding the concept of parenting in people who have and do not have children clearly describe the crisis experienced by parents when their expectations of parenthood do not meet the reality in which the parental role is performed. In this regard, programs of psychological preparation for parenthood are important, as well as psychological and pedagogical support for young parents in the process of developing their parental competence.

Parental Participation in NICU-Based Occupational Therapy, Physiotherapy, and Speech and Language Therapy: A Qualitative Study.

Parent involvement in neonatal care is beneficial to families and infant outcomes. Few studies have explored parental experiences of neonatal therapy participation. This study had 2 purposes: (1) to explore parental attitudes and beliefs about participating in neonatal therapies and (2) to identify barriers and facilitators to parental involvement and suggest ways to optimize neonatal therapy services. The study design and data analysis were informed by constructivist grounded theory methods. Semistructured telephone interviews were conducted with 9 mothers of children who had received neonatal therapy. After an early period of fear and powerlessness, a transition point occurred where the survival of their infant became more certain and parents were able to consider the future. At this point, participation in therapies was perceived to be more relevant. Therapy participation was experienced as a means of regaining autonomy and control in a context of trauma, but parents encountered barriers related to accessing therapists and external demands on their time. Parental participation is best facilitated by frequent and flexible access to neonatal therapists and staffing levels should reflect this. On commencing therapy, parents should be given therapists' contact details to maximize opportunities for face-to-face encounters. Future research is needed to explore parental readiness to participate in therapies in the neonatal intensive care unit. Research exploring the impact of parental involvement in therapies over a longer time frame would be beneficial. Finally, there is a need to determine efficacy and effectiveness of parent-delivered neonatal therapies.

Is Parent Readiness to Change Predictive of Follow-through with Diet and Activity Modifications in Children?

Assessing parental readiness to change their child's lifestyle behaviors can be used as a guide for counseling during well-child appointments. The aim of our study was to determine if parental readiness to change pre-visit was associated with plan adherence post-visit in a predominantly low-income population. Parents (n=178) self-identified readiness to change on a Likert scale and subsequently received counseling. Multivariate logistic regression was used to evaluate associations between readiness to change and plan adherence. There was no association between readiness to change and self-reported follow-through with nutrition plans (AOR at 3 months: 1.5 [0.52; 4.18]; p=.5). The ready-to-change group reported higher, albeit non-significant, follow-through with activity plans at three months (AOR 3.6 [0.82; 15.96]; p=.09). Providers should engage all parent/child dyads in behavior modification for nutrition and activity regardless of parents' pre-visit readiness to change.

Emotional and motivational readiness of six-years-olds to start school – measurement with IDS Intelligence and Development Scales and subjective assessment of mothers

Currently, in research on school readiness of children, more and more attention is paid to the socio-emotional competences of children, as well as looking for factors positively correlating with high results obtained in standardized tests. The aim of the study was to determine the emotional and motivational level of school readiness of 6-year-old children based on objective measurement using the Intelligence and Development Scales (IDS) and subjective measurement in the assessment of children’s mothers, using the “Parental Readiness Assessment Questionnaire”, based on IDS in terms of content, as well as determining the mutual relationship of results and the significance of controlled variables. 56 mothers and their children (aged 6;2–6;11 years old) were examined. Objective measurement showed average school readiness of children, subjective measurement – high. Correlations between them was on the verge of low, there was little correlation between the subscales of persistence and satisfaction with children’s achievements. For selected results, the parents’ education and age of children were significant.

The Correlation Between Parental Perceptions and Readiness to Change with Participation in a Pediatric Obesity Program Serving a Predominantly Black Urban Community: A Retrospective Cohort Study.

This study assessed whether maternal BMI and perceptions about weight and reported level of readiness to change was correlated with compliance to a pediatric lifestyle modification program targeting a hard-to-reach urban population with a high prevalence of severe obesity. The Parental Readiness Questionnaire (PRQ) was administered to the child's mother at program entry. The PRQ consisted of forty-seven multiple-choice and 10-point Likert scale questions regarding family demographics, exercise and eating habits, attitudes about health, body image, and weight, and the desire to improve nutrition and physical activity. Analysis was performed on PRQs of participants to compare parental perceptions and readiness for change with compliance to program requirements. Analysis was conducted on 596 questionnaires and compliance was categorized into three groups based on attendance to follow-up visits. Significant differences were found between short-term and long-term follow-up groups in regards to parental perception of one's health as well as the health, weight, and body image of their child. Differences were found in perceptions of one's own weight and body image as well as the health of one's self and child between the group with a maternal BMI < 35 and the group with a maternal BMI ≥ 35. A lower maternal BMI was associated with a better perception of one's own weight, body image, and health, as well as the health of the child. Positive parental perceptions on weight were correlated with improved compliance to a pediatric lifestyle modification program.

Adaptation of the parent readiness for hospital discharge scale with mothers of preterm infants discharged from the neonatal intensive care unit.

To evaluate the psychometric properties of a new Persian translation of the Readiness for Hospital Discharge Scale. Globally, one in 10 newborns are born preterm and many require care in a neonatal intensive care unit (NICU). A primary role of NICU nurses is to assure parents are well prepared to take their newborns home from the hospital. Assessment of parent perception of discharge readiness provides important input into discharge decisions. The availability of reliable and valid instruments tested within the geographical and cultural context is needed for a comprehensive assessment of predischarge readiness, so that parent needs can be identified and the necessary interventions designed and implemented. This psychometrics study included a convenience sample of 200 mothers with preterm infants being discharged from the NICU of Shahid Sadoughi Hospital in Yazd, Iran. The original 29-item version of the Readiness for Hospital Discharge Scale-Parent questionnaire was translated into Persian using the standard forward-backward method. Face, content and construct validity (principal components analysis), and reliability (internal consistency-Cronbach's alpha) were assessed. Methods followed STROBE criteria as applicable (see Appendix S1). The content validity index and content validity ratio were both 0.93. Construct validity testing identified6 factors (mother and infant physical-psychological readiness, expected support, knowledge of future events and care, knowledge of infant personal care, pain and therapeutic interventions). Using Cronbach's alpha coefficient, the reliability of the whole instrument was estimated to be 0.87. The Persian Readiness for Hospital Discharge-Parental Form for use with mothers of preterm infants being discharged from an Iranian NICU has acceptable validity and reliability. This tool can be used before discharge to determine the needs of mothers and design the necessary measures to improve quality of discharge care.

INVESTIGATING THE E-LEARNING READINESS OF GHANAIAN PARENTS DURING COVID-19

&lt;p&gt;In recent times, the Coronavirus (COVID-19) pandemic has led to unprecedented changes in the livelihood of mankind globally bringing most socio-economic activities to a standstill. The Education sector is not exempted. With the current closure of schools to contain the spread of the virus, this study sought to investigate the readiness of Ghanaian parents to support their children with e-learning while at home. Using a survey research method, parents of children in primary one to six responded to a questionnaire. Data collected from 113 parents were analyzed. The study used a factor analysis to analyze the factors influencing parental readiness. The findings indicated that parents with a high socio-economic status were more prepared to assist children with e-learning as compared to parents with low socio-economic status during COVID-19. It is being recommended that schools invest more resources in conducting e-learning training sessions for parents. The study contributes to ongoing discussions on COVID-19 and Education.&lt;/p&gt;&lt;p&gt; &lt;/p&gt;&lt;p&gt;&lt;strong&gt; Article visualizations:&lt;/strong&gt;&lt;/p&gt;&lt;p&gt;&lt;img src="/-counters-/edu_01/0620/a.php" alt="Hit counter" /&gt;&lt;/p&gt;

The relation between parental involvement and school readiness: the mediating role of preschoolers’ self-regulation skills

ABSTRACT This study investigates the relations between school readiness and self-regulation skills of preschool children and parental involvement towards education of their preschool children. More specifically, we focused on the mediation role of preschoolers’ self-regulation skills on the relation between parental involvement and school readiness. The sample of the study includes 277 children, their parents (both mothers and fathers) and preschool teachers. Structural equation model was used to test the model. It is shown that the parental involvement and self-regulation skills are significantly related to children’s school readiness. We also examined if self-regulation mediated the relation between parental involvement and school readiness and observed that the indirect effect of self-regulation skills from parental involvement to school readiness was not significant.

Parental readiness for hospital discharge as a mediator between quality of discharge teaching and parental self-efficacy in parents of preterm infants.

To examine the extent to which parental readiness for hospital discharge mediates the relationship between quality of discharge teaching and parental self-efficacy in parents of preterm infants. Parental readiness for hospital discharge and self-efficacy should be considered to establish whether preterm infants and their families are prepared for the discharge. High-quality discharge teaching could facilitate a smooth discharge transition. However, little is known about how quality of discharge teaching influences parental readiness for hospital discharge and self-efficacy. This was a descriptive cross-sectional study of 202 parents with preterm infants in a tertiary hospital in Eastern China. The key variables of interest were measured using the Chinese versions of the Quality of Discharge Teaching Scale, Readiness for Hospital Discharge Scale-Parent Form, and Preterm Parenting and Self-Efficacy Checklist. Path analyses were conducted to test the mediation models. STROBE checklist was used to compile the study's report. Parental readiness for discharge (overall and knowledge dimension) partially mediated the relationship between the quality of discharge teaching and parental self-efficacy. The two dimensions (content received and delivery) of quality of discharge teaching positively influenced parental self-efficacy by improving parental readiness for discharge. Parental readiness for hospital discharge, especially the knowledge dimension, was an important factor in quality of discharge teaching's association with self-efficacy in parents of preterm infants. Improving the quality of discharge teaching could increase parental readiness for discharge and thus promote parental self-efficacy. Improving discharge instructions is essential to help parents of preterm infants prepare for the transition to home care. Assessing readiness and confidence at an early stage and continuing to do so throughout the hospital stay may provide additional ways for nurses to identify parents' knowledge gaps and to provide tailored interventions at more opportune times before hospital discharge.

Building and Enhancing Efficacious Coparenting in Parenting Coordination

Parenting coordination is a dispute resolution process to assist the subset of separating/divorcing parents who remain entrenched in high conflict coparenting post‐separation/divorce. Based on factors known to impact positive child outcomes, its goals include assisting parents to protect children from their conflict and implementing a framework that will assist the child to have a good relationship with both parents. Despite significant efforts, parenting coordination often falls short of achieving its intended goals, which include not only healthy child adjustment but also efficacious coparenting, which is itself an important mediator and moderator of child outcomes. This article raises questions and concerns about the extent to which child outcomes may be limited if the goals of parenting coordination are limited to establishing and implementing a disengaged, parallel model of coparenting, while avoiding or giving up on efforts to build and enhance cooperative coparenting. Given preliminary findings indicating some parents note change here express dissatisfaction with the process and outcomes, it is necessary to consider whether the seemingly intractable subset of parents referred for parenting coordination might benefit from something more or different. We discuss two innovations: One aims to strengthen individual parent readiness and responsiveness and the other brings parents together in a child‐centered team‐building approach. Though cooperative coparenting is a challenging and unrealistic goal for some parents, further research is necessary to understand more fully which interventions help which families, when and in what manner.

Translation, Adaptation and Psychometric Validation of the Indonesian Version of the Readiness for Hospital Discharge Scale for Parents of Low Birth Weight Infants

PurposeParental readiness is a requirement for discharge of the high-risk infant from the hospital. Currently, in Indonesia, there are no standard tools to measure parental readiness according to parents' perceptions. This study aimed to undertake cross-cultural adaptation and psychometric validation of the original version (English) of the Readiness for Hospital Discharge Scale (RHDS)-Parent into Bahasa Indonesia. Design and methodsThe cross-cultural adaptation was comprised of seven steps: forward translation, forward translation review, blind-back translation, back translation review, pilot testing of the pre-final version with mothers of low birth weight (LBW) infants, expert panel for conceptual and content equivalence, and initial psychometric testing. In the fifth and sixth steps, content validity index was estimated. In the seventh step, exploratory factor analysis (EFA) and internal consistency reliability were conducted. In total, 146 mothers of LBW infants were included in the psychometric testing using convenience sampling. ResultsThe 22 item Bahasa-RHDS-Parent emerged in a four-factor structure evident from EFA. This version has good reliability with Cronbach alpha values for knowledge and coping ability (0.92), physical-emotional readiness (0.89), pain and power (0.83), expected support (0.80) and 0.90 across the total Bahasa-RHDS-Parent. ConclusionThe Bahasa-RHDS-Parent presents good cross-cultural adaptation and initial psychometric properties for assessing parental readiness in parents with LBW infants before hospital discharge. Practice implicationsThis questionnaire can be used by nurses to measure readiness for discharge of parents of low birthweight babies. Further testing is needed with a larger sample and parents of children of other ages and conditions for instrument improvement.

Parental Attributions, Parenting Skills, and Readiness for Treatment in Parents of Children with Disruptive Behavior

Parents’ causal interpretations for their children’s behavior, termed parental attributions, influence parents’ participation in parent-directed treatments for children with disruptive behavior. However, it is not well known whether subtypes of attributions, such as parent-causal or child-responsible attributions, are associated with parent readiness to engage in treatment. Further, parental factors, such as parenting skills, that may account for the association between parental attributions and parent readiness for treatment have not been explored. In the present study, we used path analysis to examine the links among parent-causal and child-responsible attributions, parenting skills, and parents’ readiness for treatment in 276 primary caregivers of 6- to 12-year-old children with disruptive behavior (86.6% mothers). We found direct paths linking parent-causal attributions to more readiness for treatment, and indirect paths through positive parenting. Although we found direct paths linking child-responsible attributions to greater positive parenting, there was no indirect mediation through positive parenting to parent readiness for treatment. Findings suggest that parent-causal attributions may be particularly important in determining parent readiness for treatment, but this association may be partially accounted by parents’ self-perceived positive parenting skills. Clinical implications are discussed with regard to improving parent readiness for treatment by targeting parent-causal attributions.

Adult Perceptions of Healthy Pregnancy: A Focus-Group Study.

The fastest aging society with the lowest fertility rate can be buffered by support for healthy pregnancies using sociocultural approaches. We aimed to address adult perceptions of a healthy pregnancy and explored their needs and concerns about childbirth across the lifespan. We conducted a qualitative study using content analysis to investigate general perceptions of a healthy pregnancy after focus-group interviews with adult men and women. We interviewed 60 participants in nine group sessions of 5 to 8 people per group. Three major themes emerged that affect healthy pregnancies: Taking responsibility for a prepared pregnancy, factors that interfere with a healthy pregnancy, and improving strategies for a healthy pregnancy. For the first theme, the two main concerns were financial and parenthood preparation. Factors interfering with a healthy pregnancy had direct and indirect causes, considering personal, social, and cultural changes. Strategies for a healthy pregnancy included family and workplace support, systematic education, and governmental support for financial preparation and health screening. Participants averred that various kinds of support (financial, healthcare, and career) are needed for a healthy pregnancy and childbirth. This public awareness could promote better decisions toward healthy pregnancy with more sociocultural approaches in the various settings of home, school, and the workplace.

Development of the PREMature Infant Index (PREMII™), a clinician-reported outcome measure assessing functional status of extremely preterm infants

Background Comprehensive measures to evaluate the effectiveness of medical interventions in extremely preterm infants are lacking. Although length of stay is used as an indicator of overall health among preterm infants in clinical studies, it is confounded by nonmedical factors (e.g. parental readiness and availability of home nursing support). Objectives To develop the PREMature Infant Index (PREMII™), an electronic content-valid clinician-reported outcome measure for assessing functional status of extremely preterm infants (<28 weeks gestational age) serially over time in the neonatal intensive care unit. We report the development stages of the PREMII, including suggestions for scoring. Methods We developed the PREMII according to US Food and Drug Administration regulatory standards. Development included five stages: (1) literature review, (2) clinical expert interviews, (3) Delphi panel survey, (4) development of items/levels, and (5) cognitive interviews/usability testing. Scoring approaches were explored via an online clinician survey. Results Key factors reflective of functional status were identified by physicians and nurses during development of the PREMII, as were levels within each factor to assess functional status. The resulting PREMII evaluates eight infant health factors: respiratory support, oxygen administration, apnea, bradycardia, desaturation, thermoregulation, feeding, and weight gain, each scored with three to six gradations. Factor levels are standardized on a 0–100 scale; resultant scores are 0–100. No usability issues were identified. The online clinician survey identified optimal scoring methods to capture functional status at a given time point. Conclusions Our findings support the content validity and usability of the PREMII as a multifunction outcome measure to assess functional status over time in extremely preterm infants. Psychometric validation is ongoing.

Multi-method process maps: An interdisciplinary approach to investigate ad hoc modifications in protocol-driven interventions.

Implementation scientists increasingly recognize that the process of implementation is dynamic, leading to ad hoc modifications that may challenge fidelity in protocol-driven interventions. However, limited attention to ad hoc modifications impairs investigators' ability to develop evidence-based hypotheses about how such modifications may impact intervention effectiveness and cost. We propose a multi-method process map methodology to facilitate the systematic data collection necessary to characterize ad hoc modifications that may impact primary intervention outcomes. We employ process maps (drawn from systems science), as well as focus groups and semi-structured interviews (drawn from social sciences) to investigate ad hoc modifications. Focus groups are conducted with the protocol's developers and/or planners (the implementation team) to characterize the protocol "as envisioned," while interviews conducted with frontline administrators characterize the process "as realized in practice." Process maps with both samples are used to identify when modifications occurred across a protocol-driven intervention. A case study investigating a multistage screening protocol for autism spectrum disorders (ASD) is presented to illustrate application and utility of the multi-method process maps. In this case study, frontline administrators reported ad hoc modifications that potentially influenced the primary study outcome (e.g., time to ASD diagnosis). Ad hoc modifications occurred to accommodate (1) whether providers and/or parents were concerned about ASD, (2) perceptions of parental readiness to discuss ASD, and (3) perceptions of family service delivery needs and priorities. Investigation of ad hoc modifications on primary outcomes offers new opportunities to develop empirically based adaptive interventions. Routine reporting standards are critical to provide full transparency when studying ad hoc modifications.

A Kangaroo Care Pathway for NICU Staff and Families: The Proof Is in the Pouch.

Kangaroo care (KC) improves bonding and neonatal health outcomes worldwide. However, concerns for patient safety, interrupted workflow, and parent readiness continued to impede KC in a level IV neonatal intensive care unit (NICU). Its current policy did not recommend using more than 1 staff member during patient transfer. In addition, NICU staff and parents lacked skills training and education regarding the feasibility of routine KC. A KC pathway was developed and integrated within a multifaceted, champion-based, simulated educational training program for NICU staff and families to promote earlier and more frequent KC by increasing their knowledge and comfort with this practice. Patient data collected before and after the study determined the frequency, timing, and mode of respiratory support during KC. Pre- and posttest surveys evaluated nurses' knowledge and comfort level with KC. The frequency of KC occurred 2.4 times more after the intervention. The percentage of KC episodes for intubated patients nearly doubled. The posttest survey scores for nursing knowledge and comfort level also markedly improved. The KC pathway ameliorated feelings of discomfort by depicting criteria and instructions for safe practice. Multidisciplinary champions were invaluable in assisting the nursing staff with patient transfer during KC. More dose-response studies are needed to maximize the clinical benefits of KC in developed countries.

Identifying key elements for paediatric advance care planning with parents, healthcare providers and stakeholders: A qualitative study

Background: Although international guidelines recommend discussions about goals of care and treatment options for children with severe and life-limiting conditions, there are still few structured models of paediatric advance care planning. Aim: The study aimed at identifying key components of paediatric advance care planning through direct discussions with all involved parties. Design: The study had a qualitative design with a participatory approach. Participants constituted an advisory board and took part in two transdisciplinary workshops. Data were collected in discussion and dialogue groups and analysed using content analysis. Setting/participants: We included bereaved parents, health care providers and stakeholders of care networks. Results: Key elements were discussions, documentation, implementation, timing and participation of children and adolescents. Parents engage in discussions with facilitators and persons of trust to reach a decision. Documentation constitutes the focus of professionals, who endorse brief recommendations for procedures in case of emergencies, supplemented by larger advance directives. Implementation hindrances include emotional barriers of stakeholders, disagreements between parents and professionals and difficulties with emergency services. Discussion timing should take into account parental readiness. The intervention should be repeated at regular intervals, considering emerging needs and increasing awareness of families over time. Involving children and adolescents in advance care planning remains a challenge. Conclusion: A paediatric advance care planning intervention should take into account potential pitfalls and barriers including issues related to timing, potential conflicts between parents and professionals, ambiguity towards written advance directives, the role of non-medical carers for paediatric advance care planning implementation, the need to involve the child and the necessity of an iterative process.

Parental readiness should be considered

Parental readiness should be considered