Parental Partner Research Articles

27 Our journey, our stories: The lived experiences of parents and caregivers of children with severe neurodevelopmental disorders and behavioural complexity requiring sedation

Abstract Background 40% of children with severe neurodevelopmental disorders (NDD) in British Columbia (BC) are unable to access recommended medical evaluations due to behavioural complexity (aggression/self-injury). Medical evaluations under anesthesia (EUA) are thus often required, however, difficulties in coordination result in inequities and repeated traumatic sedations. Objectives We aim to describe the experiences of parents/caregivers of children with NDD and behavioural complexity undergoing EUA at BC Children’s Hospital (BCCH). Using thematic analysis we aim to identify leverage points for action to address health inequity. Design/Methods Patient oriented research (POR) principles guided study design, with parent partners involved throughout phases of the project including identification of study area, recruitment, development of interviews, data analysis and knowledge translation. Semi-structured interviews were conducted to explore families’ experiences of EUAs. Data collected included the child’s demographics/diagnoses, their experiences of previous EUA, and facilitators and barriers towards this. Results 11 families participated in the study. Key stakeholders involved in care coordination of EUA were identified (Figure 1). An illustration was developed by a parent partner as a more accessible means of presenting families’ narratives (Figure 2), integrated within five emerging themes: 1) The cumulative physical/psychological trauma experienced by families when accessing care (represented by the river which deepens and widens over time); 2) The need for an awareness and understanding from providers of behavioural complexity (represented by child being left behind); 3) Requirement of equitable and not equal care, tailored towards specific needs (represented by the precarious raft and boat); 4) Communication being key (represented by the walky-talky and map); 5) Providers being willing to undertake the role of care coordination (represented by the rescue workers, with safety gear and a rope, representing resources and role of care coordination respectively). Details within each scene (e.g. dad holding up his younger son on his shoulders to shield him from the trauma vs mum holding the hand of her older daughter now immersed in the water due to repeated traumatic experiences with age) attempt to capture the nuanced experiences encountered by families over time. Conclusion Our results highlight the complex journey coordinating EUA for this specific population. Due to resource constraints and lack of formalised pathways, current processes are traumatic and result in missed opportunities. Next steps include advocacy by the EUA Project Group at BCCH for 1) A centralized intake process with a hospital-based coordinator role and 2) Implementation of integrated EUA algorithms and care pathways between services, to improve equitable access and minimise trauma for all involved in EUA.

Parents' perception of children's behaviors, self-compassion, and parenting stress: Actor-partner interdependence model.

This study explores how self-compassion mediates the relations between parents' perceptions of children's behaviors and parenting stress, as well as interactions between parents. We conducted a longitudinal actor-partner interdependence mediation model and assessed parents' perceptions of children's behaviors, self-compassion, and parenting stress. A total of 656 pairs of parents (fathers' Mage = 34.96 years, SDage = 5.62; mothers' Mage = 33.13 years, SDage = 5.77) participated in the study. Results revealed that parents' perceptions of children's problem behavior affected their own parenting stress through their self-compassion. Additionally, parents' perceptions of children's prosocial behavior directly influenced their own parenting stress and also affected it through self-compassion in both parents. Parents' perceptions of children's problem behavior directly influenced their partner's parenting stress and also indirectly through their own self-compassion. Similarly, parents' perceptions of children's prosocial behavior affected their partner's parenting stress via self-compassion in both parents. The findings highlighted the importance of parents recognizing and valuing their children's positive behaviors, thereby fostering a constructive "child effect" that improved the dynamics of the parental subsystem. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Measurement invariance of the Coparenting Relationship Scale (CRS) across 10 countries.

The purpose of this study was to assess the factor structure and the measurement invariance of the Coparenting Relationship Scale (CRS) across 10 countries based on the seven-factor coparenting model (i.e., Coparenting Agreement, Coparenting Closeness, Exposure to Conflict, Coparenting Support, Endorsement of Partner's Parenting; Division of Labor) proposed by Feinberg (2003). The results of research on coparenting from numerous countries have documented its foundational importance for parent mental health, family relationship quality, child development, and psychopathology. Yet, a cross-country perspective is still lacking. Such a perspective can provide insight into which dimensions of coparenting are universally recognized and which are especially prone to variation. A unique multinational data set, comprised of 15 individual studies collected across 10 countries (Belgium, Brazil, China, Israel, Italy, Japan, Portugal, Switzerland, Turkey, USA) in nine languages was established (N = 9,292; 51.1% mothers). Measurement invariance analyses were conducted. A six-factor structure (original seven factors minus Division of Labor) of the measure was consistent across the different contexts and measurement invariance was achieved at the configural level. There was no support for metric or scalar invariance. These findings provide a basis for the CRS to be used across countries and should inspire future quantitative and qualitative research in cross-country coparenting research to understand what aspects are universal and what aspects of coparenting are linked to specific material, relational, or ideational conditions that underlie high-quality coparenting. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

The mutual influence of parent-child maladaptive emotion regulation on posttraumatic stress following flood exposure.

Decades of disaster research support the influence parents have on their children's adaptation. Recently, research has shifted to focus on disasters as a whole family experience. Using the actor-partner interdependence model, this study examines maladaptive cognitive emotion regulation strategies in parents and children and how these strategies influence their own and one another's posttraumatic stress symptoms (PTSS). The present study includes 485 parent-child dyads who experienced the 2015-2016 Texas floods. The majority of parents identified as mothers (66.3%), with a male child (52.8%) whose average age was 13.75 years. Mplus was used to identify the models and evaluate differences between each cognitive emotion regulation strategy across parent-child dyads in the high disaster exposure group compared to all other levels of exposure (other-exposure). Odds ratios examined differences not captured by the actor-partner interdependence model. Support for interdependence was found for the other-exposure group, suggesting parents and children mutually influence each other's PTSS by their own cognitive emotion regulation. No interdependence was found in the high-exposure group. However, high-exposure child actor effects were found for self-blame and other-blame, and child partner effects were only found for self-blame. Parent actor effects were only significant for catastrophizing and parent partner effects for catastrophizing and rumination. Odds ratios for the high-exposure group found that only child self-blame influenced parent PTSS, and only parent rumination and catastrophizing influenced child PTSS. Implications for supporting families after disasters are discussed. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Food Insecurity and Children's Problem Behaviors: The Mediating Role of Parental Relationship Quality and Parenting Stress.

Food insecurity, identified as a critical stressor for many families, can directly and indirectly influence children's development through interparental relationships and parenting. This study examines how food insecurity relates to children's problem behaviors and the mediating roles of interparental relationship quality and parenting stress. It also investigates the association between parents' perception of relationship quality and both their own and their partner's parenting stress. The study included 2095 children from the Future of Families and Child Wellbeing Study. The actor partner interdependence model was used to explore the actor and partner influence of relationship quality on parents' parenting stress. To examine the association pathways from food insecurity to children's problem behaviors, a structural equation model was conducted. Results suggest that fathers' perception of couple relationship quality predicted both their own and their partner's parenting stress while mothers' perception of couple relationship quality only predicted their own, but not fathers', parenting stress. In the positive association between food insecurity and children's problem behaviors, there was a serial mediation through mothers' perception of relationship quality and mothers' parenting stress. In addition, food insecurity was negatively correlated with mothers' perception of relationship quality, but not with that of fathers. This study highlights the pathway from food insecurity to children's problem behaviors through mothers' perceptions of interparental relationship quality and parenting stress. Results provide support for the family stress theory and offer valuable insights for the formulation of potential prevention and intervention programs.

Practice recommendations regarding parental presence in NICUs during pandemics caused by respiratory pathogens like COVID-19.

To co-create parental presence practice recommendations across Canadian NICUs during pandemics caused by respiratory pathogens such as COVID-19. Recommendations were developed through evidence, context, Delphi and Values and Preferences methods. For Delphi 1 and 2, participants rated 50 items and 20 items respectively on a scale from 1 (very low importance) to 5 (very high). To determine consensus, evidence and context of benefits and harms were presented and discussed within the Values and Preference framework for the top-ranked items. An agreement of 80% or more was deemed consensus. After two Delphi rounds (n = 59 participants), 13 recommendations with the highest rated importance were identified. Consensus recommendations included 6 strong recommendations (parents as essential caregivers, providing skin-to-skin contact, direct or mothers' own expressed milk feeding, attending medical rounds, mental health and psychosocial services access, and inclusion of parent partners in pandemic response planning) and 7 conditional recommendations (providing hands-on care tasks, providing touch, two parents present at the same time, food and drink access, use of communication devices, and in-person access to medical rounds and mental health and psychosocial services). These recommendations can guide institutions in developing strategies for parental presence during pandemics caused by respiratory pathogens like COVID-19.

Effect of partner presence on emotion regulation during parent-child interactions.

Having people around, especially if they provide social support, often leads to positive outcomes both physically and mentally. Mere social presence is especially beneficial when it comes from a loved one or romantic partner. In these studies, we aim to expand the understanding of how the presence of one's romantic partner affects emotion regulation in parental situations. Specifically, we examined how partner presence influences the parent's emotional intensity, emotion regulation, and interpretation of their child's emotion regulation. We examined these questions in parents of both non-autistic children (Study 1) as well as autistic children (Study 2), which we hypothesize leads to more intense emotional interactions. The parents of autistic children were better able to regulate their emotions when their partners were present compared to when they were absent. Furthermore, in both studies, parents' ratings of their children's ability to regulate their emotions were higher when their parent's partner was present compared to when the partner was absent. However, in both studies, we found no significant difference in the parents' emotional intensity when their partners were present compared to when their partners were absent during the emotionally charged interaction with their child. Our findings help highlight the impact of partner presence on parent and child emotion regulation.

Honoring Family: Using parent partner expertise to strengthen a child welfare coaching program

Increasingly, the child welfare system is acknowledging the importance of incorporating parent voice and expertise into changes in child welfare practice, policy, and research; however, there is limited knowledge on how to incorporate parents’ expertise into program-level change. This study sought input from parent partners on the shared principles of a statewide coaching program for child welfare supervisors. Two focus groups were conducted, an initial focus group (n = 17) and a member checking focus group (n = 14). Data were analyzed using thematic analysis. Findings included three key themes: (a) understand parent context, (b) activate engagement, and (c) bridge principles and practice. Strategies for incorporating parent partner input into the coaching program are discussed.

Childhood interpersonal trauma and postpartum parenting alliance: The role of mindfulness in couples.

A large body of evidence demonstrates that childhood interpersonal trauma is associated with poorer parental and couple outcomes following the birth of a new child. As a unique component of couple functioning, parenting alliance is key during this transition period and is associated with long-term parental and child well-being. However, parenting alliance remains understudied in relation to childhood trauma, and little is known regarding the underlying mechanisms of this relationship among couples. Given its documented role in the intimate relationships of childhood interpersonal trauma-exposed individuals, dispositional mindfulness could be considered as a potential explanatory mechanism. Using a dyadic approach, this study examined the role of dispositional mindfulness, and its different facets, in the association between cumulative childhood interpersonal trauma (CCIT) and parenting alliance. A randomly selected community sample of 421 parental couples with infants completed online questionnaires. For both mothers and fathers, CCIT was associated with a more negative perception of parenting alliance through lower dispositional mindfulness, specifically through lower scores on the nonjudgment and describing facets. Moreover, results revealed dyadic indirect effects between parents' CCIT and their partner's parenting alliance through both partners' dispositional mindfulness. This study provides insight on how parents of an infant may influence each other's perceived parenting alliance through their dispositional mindfulness. Results also highlight mindfulness as a relevant mechanism for CCIT survivors who struggle to establish or maintain a positive parenting alliance, as well as the need to involve both parents in research and intervention. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Parents' 'fault' must not weigh on their children. Surrogacy as a universal crime in Italy: Is it compatible with bioethical principles?

Assisted reproduction techniques (ARTs) have given rise to novel, non-traditional family models. Still, among the various applications and approaches of 'medically assisted procreation' (MAP), the most divisive one undoubtedly is 'gestational surrogacy' (GS), also in light of the rising number of couples who have chosen it over the past twenty years. Another major implication of ARTs is the creation of intentional (or intended) parenthood in addition to genetic one: the genetic parent's partner is thus defined as the intentional (or second) parent, who by free choice, shares the family project with the genetic parent, even without any biological tie with the child. Hence, the intended parent takes on the same rights and responsibilities towards the child as the biological one. Several countries, including Italy, have enacted norms to discourage cross-border surrogacy, deeming it harmful to the dignity of women and children. Recently, however, the Italian government has decided intensify the fight against this practice: the Chamber of Deputies (Italy's lower chamber of parliament) has passed a law which punishes couples that resort to surrogacy even if the agreement and the birth take place abroad. Therefore, surrogacy would become a so-called universal crime. In light of the fact that criminalization is a serious and highly consequential step, which may have life-changing consequences for the intended parents, the aim of this paper is to assess whether this may be an effective instrument for regulating the interests at stake and, therefore, whether it would be desirable for other countries to follow such a model. Ultimately, it is worth remarking that for those who seek to achieve parenthood, such a desire is among the most profound aspects of a person's existential realization. When due to a delicate balance of ethics standards and potentially conflicting rights, lawmakers inter-vene, an authoritarian approach is unlikely to be beneficial. Offering real alternatives to surrogacy in an organic and pragmatic fashion (i.e. expediting adoption procedures, favoring motherhood at a younger age, when infertility issues are less likely to have set in) may be the best way to disincentivize fertility traveling and make sure the rights, hopes and aspirations of all the parties involved are upheld properly.

Promoting maternal-child health by increasing breastfeeding rates: a National Canadian Baby-Friendly Initiative Quality Improvement Collaborative Project

While breastfeeding has long been an important, globally recognized aspect of population health, disparities exist across Canada. The Baby-Friendly Initiative (BFI) is a WHO/UNICEF best-practice program that helps ensure families...

Development of Interventions to Support Provincial Implementation of the Baby-Friendly Initiative: A Study Protocol.

Breastfeeding is internationally recognized as the optimal form of infant nutrition. The Baby-Friendly Initiative (BFI) is an evidence-informed program that leads to improved breastfeeding outcomes. Despite the benefits of breastfeeding, Nova Scotia has one of the lowest breastfeeding rates in Canada. Additionally, only two birthing hospitals in the province have BFI designation. We aim to address this gap using a sequential qualitative descriptive design across three phases. In Phase 1, we will identify barriers and facilitators to BFI implementation through individual, semi-structured interviews with 40 health care professionals and 20 parents. An analysis of relevant policy and practice documents will complement these data. In Phase 2, we will develop implementation interventions aimed at addressing the barriers and facilitators identified in Phase 1. An advisory committee of 10-12 administrative, clinical, and parent partners will review these interventions. In Phase 3, the interventions will be reviewed by a panel of 10 experts in BFI implementation through an online survey. Feedback on the revised implementation interventions will then be sought from 20 health system and parent partners through interviews. This work will use implementation science methods to support integrated and sustained implementation of the BFI across hospital/community and rural/urban settings in Nova Scotia. This study was not registered.

Together We Can Face On: Co-parenting and Parental Stress on Mothers During the Covid 19 Pandemic

A mother becomes a figure who has a central role in the family, one of which is in terms of parenting. However, when carrying out the role of parenting, it is not always easy. Difficult conditions and situations will be encountered and allow stress to arise. The situation difficulty coupled with the occurrence of the covid-19 pandemic causes all activities to be carried out at home and adds to the work to become children's learning companions and to take care of family needs. The condition can make the mother feel pressure for the demands faced, causing stress. Looking at this, the researchers assessed a thing that can affect the stress of mothers when raising children (parental stress) is the involvement of partners in parenting (co-parenting). This study aims to prove, namely how the effect of co-parenting on parental stress in mothers, especially during the covid-19 pandemic. In the process, this study involved 62 mothers as research respondents by providing research questionnaires. The research questionnaire consisted of a co-parenting scale and a parental stress scale. The results of data analysis obtained by simple regression analysis showed that there was an effect of co-parenting on parental stress in mothers during the covid-19 pandemic (p < 0.05). The output are that the role of partners in working together to care for and care for children can reduce the stress felt by mothers.

54 Preterm Parents Identified Meaningful Outcomes: Involving Parents in Implementing Change

Abstract Background The Canadian Neonatal Follow-Up Network (CNFUN) reports on neurodevelopmental impairments (NDI) in the very preterm population but has never asked parents which outcomes and definitions are meaningful to them. The Parent Voices group conducted four studies which showed differences between parents and CNFUN perspectives on definitions, severity, composite outcomes, which outcomes, and the need to report positive as well as adverse outcomes. Disseminating and implementing change based on these results is the next essential step. Objectives To create consensus statements to guide evidence-based change. Design/Methods Using a modified Delphi method, Parent Voices results were reviewed and discussed with parents, clinicians and researchers in a virtual workshop in Oct 2021. The discussion was analyzed qualitatively to create statements, circulated for feedback, and 80% consensus statements identified by electronic polling. Priority items requiring further work were identified, working groups created, and results presented at a Sept 2022 workshop. Results In the 2021 workshop, 17 consensus statements were identified (7 from the Parent Voices results, 5 from the discussion, and 5 were out of scope). Actionable statements (n=11, Table 1) and items needing further work (n=6, Table 2) were identified and progress was made (Tables 1 and 2). To identify how to measure 7 outcomes which parents and stakeholders identified as important (child well-being, quality of life, socioemotional and behavioural, respiratory, feeding, sleeping, and caregiver well-being), working groups reviewed literature and made recommendations for minimal dataset and funded research at a virtual presentation with parent, clinicians, and researchers in Sept 2022. In the summer of 2022, the Canadian Premature Babies Foundation (CPBF), Parent-EPIQ team members and summer students disseminated the Parent Voices results to lay stakeholder groups via CPBF blogs and webinars. They also pursued a project identified in the 2021 workshop to educate parents about the role of Neonatal Follow-Up Programs using infographics and information sheets. Conclusion We have successfully collaborated with parent partners to implement the actionable results from our Parent Voices Project, and have a process to implement change when further work is required. Involving parents in research, knowledge dissemination and implementation can lead to changes that accurately represent the priorities of families.

57 Butterflies and Ribbons: The Positive Impact of Educational Strategies to Optimize Communication with Parents after the Perinatal Loss of a Co-twin

Abstract Background In neonatology, multiples pregnancies are common: 50% of twins and 95% of triplets are admitted to the NICU. Unfortunately, it is not rare for one baby to die. When this happens, parents are in a unique situation: they need to mourn their baby, while continuing to visit their other baby(ies) in the NICU. Communication with parents in these circumstances has been demonstrated to be sub-optimal, sometimes because clinicians are unaware and ask harmful questions (e.g., “Do you have any other kids?”) or because their education on how to deal with such issues was limited (despite available evidence). These gaps often lead to parental distress. Objectives To assess the impact of two different teaching strategies for clinicians dealing with the perinatal loss of a co-twin or triplet. Design/Methods Two different programs aimed at educating clinicians dealing with perinatal loss of co-twins or triplets were evaluated in 2022: 1) an open online 4-hour course with theory and practical points (the Butterfly project); and 2) a one hour in-person (workshop) or online course offered to NICU clinicians (free of charge) in a large academic NICU. The second course became the “Ribbon project” because bereaved parent partners had recommended the symbol of a ribbon rather than the butterfly as better reflecting perinatal loss. In both courses, essential topics were covered. For example: identifying the status of a surviving twin (including name of the deceased one); moving the surviving baby to another room after the death, knowing when and how to speak with bereaved parents, and identifying the surviving twin status at discharge. Participants in both groups were surveyed to ask whether they were satisfied with the course, their knowledge of care for perinatal loss was evaluated pre- and -post course, as well as when and how they used their training. Clinical impacts of the Ribbon project were also evaluated. Results In the butterfly project, all participants (n=734) reported that training exceeded or met their expectations, while 97% reported they learned new skills, and 48% reported already applying them. Many participants were grateful for the course, answering positively to open-ended questions: e.g., “I found this course incredibly useful for my future practice,” and “I feel a lot more confident in supporting parents.” For the ribbon project (n= 174), 97% were satisfied or very satisfied with the training, and 97% reported feeling more comfortable talking to bereaved parents. Knowledge improved with training. In clinical audits that occurred between 2020 and 2022, 100% of cases were identified (28/28; 23 twins and 5 triplets surviving; 8 antenatal deaths) on the incubator and the baby(ies)’ admission card. Also, 100% of the surviving twins or triplets kept their identification (#1, 2, or 3) after speaking with parents, all changed rooms after the death of their co-twin or triplet, and all had the name of their co-twin or triplet on the discharge summary. All clinicians (55) knew what the ribbon symbol meant when asked during surprise audits at the bedside; 38/55 (71%) felt comfortable dealing with parents in this situation and for those who did not, they knew who to ask for help. Conclusion Different educational strategies to optimize communication with families after the perinatal loss of a co-twin/triplet are appreciated and have a positive impact. One hour of teaching specifically for NICU personnel is enough to make a difference.

Sex-specific behavioral and physiological changes during single parenting in a biparental species, Columba livia

Many species exhibit biparental care to maximize fitness. When a partner is lost, the surviving partner may alter their behavior to compensate offspring. Whether both sexes use the same physiological mechanisms to manifest their change in behavior remains elusive. We investigated behaviors and mechanisms associated with the alteration of parental care post-partner removal in a biparental avian species, the rock dove (Columba livia). We hypothesized that rock dove single parents experience sex-biased changes in neural genomic transcription and reproductive behaviors, and these changes are related to chick development. We manipulated parental partner presence and measured parental attendance, offspring growth, gene expression of glucocorticoid receptors (GR) and mineralocorticoid receptors (MR) in the pituitary, and GR, MR, and estrogen receptor beta (ER-β) in the hypothalamus. We also measured circulating plasma concentrations of the stress-associated hormone corticosterone and the parental care-associated hormone prolactin. We also quantified prolactin gene (PRL) expression changes in the pituitary, as well as prolactin receptor (PRLR) expression in the hypothalamus and pituitary. We found that single mothers and fathers maintained similar provisioning levels as paired parents, but spent less cumulative time brooding chicks. Chicks of single parents were smaller than paired-parented chicks after three days post-hatch. Mothers in both treatment groups experienced higher expression of hypothalamic GR as compared to fathers. Single parents experienced lower PRL gene expression in the pituitary as compared to paired parents. No significant differences were found for the circulating hormones or other genes listed.

64 Consensus Practice Recommendations Regarding Parental Presence in Canadian NICUs to Inform Ongoing and Post Pandemic Policies

Abstract Introduction/Background In March 2020, parental presence restriction policies were introduced in Canadian NICUs as institutions aimed to prevent COVID-19 transmission during the emerging global pandemic. However, parental presence in NICUs is necessary for maximizing parent and infant health outcomes, and there continues to be significant variation in parental restriction across Canadian NICUs. Objectives To identify the impact of parental restriction policies in Canadian NICUs on parents, infants, and healthcare providers and co-create practice recommendations for ongoing pandemic management and post-pandemic policies. Design/Methods A national survey was conducted to assess the impact of Canadian NICU restriction policies. Recommendations were developed through Delphi and Values and Preferences research methods. For the first Delphi survey, participants rated 50 items of importance from the national survey on a scale from 1 (very low importance) to 5 (very high). On the second Delphi survey, participants ranked the top 20 items from highest relative to lowest importance. A literature review was conducted for the top 10 items, and evidence of known benefits and harms was presented to the panel of decision-makers during the Values and Preferences consensus meetings. Participants voted on the inclusion of each item as a national recommendation and discussed additional caveats. A vote of 80% or more was deemed a consensus. Results Parents (n=426) and healthcare providers (n=205) completed a national survey, from which a list of reported impacts was derived. After two separate Delphi rounds (n=39, and n=20), a series of 10 recommendations with the highest rated importance were identified. A representative panel of decision-makers (n=20), including parents of NICU infants, NICU healthcare providers and managers, and infectious disease and public health policy-makers, took part in a Values and Preferences task. Items of importance included 7 strong recommendations (parents as essential caregivers, providing skin-to-skin contact, direct or mothers’ own expressed milk feeding, attending medical rounds, mental health and psychosocial services access, food and drink access, and inclusion of parent partners in pandemic response planning) and 6 conditional recommendations (providing hands-on care tasks, touch, two parents present at the same time, use of communication devices, and in-person access to medical rounds and mental health and psychosocial services). Consensus was reached on all items in favour of inclusion in national recommendations for Canadian NICUs. Conclusion These recommendations will guide ongoing and future pandemic management and policies with respect to parental presence and involvement in their infants’ care.

Care Needs of Parents of Children With Cancer in a Low-Middle-Income Country.

Background: Mapping out actual supportive care needs assists nurses in providing holistic individualized care. This study aimed to explore the care needs of parents of children with cancer in the Philippines. Method: Guided by the Supportive Care Needs Framework (SCNF), this study used an embedded mixed-method design with the quantitative revised Cancer Patient Needs Questionnaire and qualitative semistructured interviews to describe parents' care needs and priorities. Results: Filipino parents (N = 156) of children with cancer have various care needs which could be classified along the SCNF categories-practical, informational, spiritual, physical, emotional, and physical needs as ranked from highest to lowest. A number of variables were significantly associated with care needs. Solid tumor diagnosis was associated with greater practical, emotional, and psychosocial care needs; having a child who had undergone surgery was associated with more practical and spiritual care needs; and being within one year of the child's diagnosis was associated with practical, psychosocial, and spiritual care needs. Parent priority needs included (a) addressing financial needs; (b) access to temporary housing to minimize treatment-related costs; (c) support groups among parents of children with cancer as a source of information; (d) financial and social support between members of family and partners of parents of children with cancer; and (e) using prayer to facilitate acceptance. Conclusions: Supportive care needs of parents of children with cancer are important components of care that should be given recognition to enhance holistic individualized care throughout the childhood cancer experience.

Determining the benefits and drawbacks of parents using personal connections and social networks for recruitment in research projects: a qualitative study

BackgroundIt is becoming more common for parents of children with chronic conditions to join research teams as partners. Parent partnerships can help align research with what is relevant and important to families. It is also common for parent partners to be asked to share information about a study through their personal networks, which supports study recruitment. In this parent-led study, we explored parents' experiences when working together with researchers in patient-oriented research studies, in relation to study recruitment.MethodsDemographic data were collected through a brief online survey (SurveyMonkey®) and analysed descriptively (n, %, median (interquartile range; IQR)). Qualitative data were collected through focus groups and interviews (July to October 2021), transcribed verbatim, and analysed thematically. Parent co-leads were involved in every stage of the study, including study design, recruitment, data collection, analysis, interpretation, and knowledge mobilization.ResultsFifteen parents (n = 14 women) who had research partnership experience participated in this study. Most (n = 13) participants self-identified as White or of European descent. The majority (n = 10) had partnered in 1–3 research projects, while five participants had partnered in 4 + projects. Parents had a median of 3 years (IQR: 5) of partnership experience. We identified the following three themes: motivations, authentic partnerships, and learned decision making. Each theme included reflections about recruitment, and about research partnership in general. Motivations included a personal connection to the research topic, a connection to the community impacted by the research topic, and a desire to create change. Authentic partnerships were important for a meaningful experience, and enhanced participant’s willingness and ability to share study materials. Learned decision making reflected parents’ evolving decisions and practices related to sharing study information or personal information to support research. We provide a summary of participants’ recommendations for researchers who work with parent partners, and recommendations for parents as they approach research partnerships.ConclusionsExperiences shared by parents who have partnered in research provide valuable information to inform recruitment methods and improve team functioning. Parent partners expressed a willingness to support recruitment and valued a strong research team working together for a common outcome. This study yields a set of recommendations guiding future research that engages parents as team members.

Drivers that decrease hospital-delivered care in children with medical complexity: Parental perspectives.

Children with medical complexity (CMC) have chronic and severe conditions leading to medical fragility. CMC represent less than 1% of children but account for one-third of paediatric healthcare expenditures. Enrollment to a complex care program (CCP) decreases health care resource utilization while improving parental satisfaction. An in-depth understanding of how these changes operate in real-world setting is needed to further support CMC and their families. This study aimed at assessing the possible reasons for a decrease in emergency department (ED) visits and hospitalization length of stay related to enrollment to a CCP, based on parental perspectives. Using a qualitative approach, data were collected using in-depth, semi-structured interviews with parents of CMC enrolled in a CCP from a university hospital centre in Montreal, Canada. The interview guide was co-constructed by an interdisciplinary team, including a parent partner and a clinical nurse coordinator. Themes have been identified inductively, using thematic analysis. Parents identified personalized care, family empowerment and guidance as enablers arising from the CCP that contributed to the decrease in hospital-delivered care utilization. Improvement in medical baseline condition was also identified as a contributing factor, while not necessarily related to program's support. In this study, we identified personalized care, parental empowerment, and guidance as three strategies for a CCP to potentially decrease ED visits and hospital length of stay, from the parents' perspective. Parents identified the clinical nurse coordinator as playing a central role in supporting the implementation of these strategies.