Experiences Of Parents Research Articles

"He was not listening to hear me": Parent experiences with communication, inclusion, and marginalization in the pediatric emergency department.

Inequities in pediatric emergency department (ED) care may be influenced by disparities in clinician communication. We sought to examine, from the perspective of parents from marginalized racial and ethnic backgrounds, how clinician-parent communication is characterized during pediatric ED visits. We conducted and analyzed in-depth semistructured individual interviews with parents of pediatric ED patients from marginalized racial and ethnic backgrounds. We applied a constant comparative method approach to conduct a thematic analysis informed by grounded theory. To ensure rigor, we collected and analyzed data concurrently. We used the patient-centered communication (PCC) framework and the 10 principles of Public Health Critical Race Praxis as sensitizing constructs during analysis. Two coders followed several analytical steps: (1) open coding for concept discovery, (2) grouping concepts into themes, (3) axial coding to identify thematic properties, and (4) identification of exemplar excerpts for rich description. Thematic saturation was based on repetition, recurrence, and forcefulness. Nineteen parents participated. Parents described three clinician communicative behaviors that facilitated their sense of inclusion or marginalization: information exchange, empathic communication, and partnership-building. Parents also stressed the importance of their own proactive communication in facilitating their inclusion. Few participants described experiencing racism during their child's ED visit, yet many did during prior health care encounters, which they connected to their current experience. In particular, parents described how their use of proactive communication was motivated by their past experiences of racism in medical encounters. These narratives demonstrate ways in which experienced racism, both past and present, may inform how parents receive and respond to gaps in PCC. Communication focused interventions that adapt a race-conscious perspective may have a role in promoting health equity.

Post‐Mortem Imaging to Investigate the Causes of Stillbirth in Australia: Views of Parents, Midwives and Obstetricians

ABSTRACTIntroductionThere is increasing interest regarding the role and value of post‐mortem imaging in identifying the causes of stillbirth. We sought to understand the experiences of parents and the perceptions and practices of midwives and obstetricians regarding post‐mortem imaging (computed tomography [CT], magnetic resonance imaging [MRI], ultrasound and X‐rays of the baby), in the investigation of stillbirths, and how its use and perceived value compares to that of other stillbirth investigations.MethodsCross‐sectional, web‐based surveys of parents who experienced stillbirth in Australia from 2018 to 2022 and midwives and obstetricians involved in the care of parents who experienced stillbirth in the same 5 years. Data were analysed descriptively.ResultsData from 68 parents and 94 midwives and obstetricians were included. According to parents, post‐mortem imaging (CT, MRI, ultrasound and X‐ray) were the least discussed (1%–16%) and performed (0%–13%) stillbirth investigations. Twenty‐eight percent of midwives and obstetricians had recommended the option of post‐mortem imaging to parents, while 45% felt that doing so was beyond their scope of practice. Relative to autopsy, midwives and obstetricians were often unsure of the value of MRI across a range of clinical scenarios, and CT, MRI, ultrasound and X‐ray were the investigations least often discussed (17%–47%) with parents.ConclusionsPost‐mortem imaging is currently underutilised in the investigation of stillbirths. Education and training are needed to enhance maternity care professionals' awareness of the role and value of imaging for identifying the causes of stillbirths, and how best to discuss these investigations with families.

Tiny drivers, big decisions: parental perceptions and experiences of power mobility device trials for young children with cerebral palsy

Purpose To explore parental perceptions and experiences at three timepoints [baseline (T0), post-intervention period 1 (T1), and post-intervention period 2 (T2)] across a 16-week study involving their children’s use of two power mobility (PM) devices: an Explorer Mini (EM) and a modified ride-on car (mROC). Materials and methods Data for this phenomenological qualitative study were gathered as part of a multi-site randomized, counterbalanced AB crossover clinical trial, wherein all child participants used PM device A (EM) and PM device B (mROC) for eight weeks each. Trained researchers conducted in-person, audio-recorded semi-structured parental interviews at T0, T1, and T2. Data from each timepoint were individually analysed using the constant comparative method. Results Twenty-four child-parent participant dyads partook in the larger clinical trial. The parent participant within each dyad completed three qualitative interviews (one per timepoint), resulting in a total of 72 interviews (24 at each timepoint). At each timepoint, unique themes representing the parent participants’ journey across the study emerged. Main themes were: T0 – “Anticipation”, “Adjustment”, and “Recognizing Strengths”; T1 – “Benefits and Barriers”, “Expectations”, and “Importance of Device Trials”; T2 – “One Size Doesn’t Fit All, But All Are Worth Trying”, “Environmental Affordances Enable Learning”, and “Enabling Abilities and Participation”. Conclusion This study provides insights into how parental perceptions about power mobility may shift over time, thereby assisting clinicians in implementing ON Time Mobility. The study further highlights how PM use can positively impact socialization and participation and how PM use may provide children with a mobile learning environment.

Parenting and substance use problems in Sweden: Hiding, Disappearing and Compensating

Aim This article examines how Swedish parents navigate the multifaceted challenges of parenthood while struggling with substance use problems, including both alcohol and illicit drugs, and societal stigma. It explores how parents present themselves as responsible caregivers while distinguishing between acceptable and harmful substance use in the context of parenting. Methods The study uses data from unstructured 15 life story interviews, conducted over the phone or Zoom. The participants narrated their life stories related to substance use problems, covering various topics like education, relationships, and parenting. The interviews were analyzed using thematic analysis to reveal strategies used by participants to mitigate perceived harm from substance use problems, enabling them to present themselves as responsible parents. Results Three main themes were identified: Hiding, compensating, and disappearing, focusing on time and place. The analysis shows that Swedish parents manage parenthood with substance use problems and societal stigma by concealing substance use problems and maintaining a ‘façade of normality’, often scheduling use when children are asleep. Some resort to hiding substances to create the illusion of moderation. Despite challenges, like needing alternative locations for substance use problems, parents emphasize active engagement in their children’s lives. Conclusion This study highlights how parents with substance use problems navigate parenthood amid societal stigma, revealing their strategies and challenges. These insights are vital for healthcare professionals and policymakers crafting support interventions to address parental experiences and associated emotional burdens.

Acceptance and Commitment Therapy Eczema Management Program for Children With Eczema: A Pilot Randomised Controlled Trial.

Eczema significantly affects the quality of life of affected children and their families, with psychological stress often overlooked. Acceptance and Commitment Therapy (ACT) provides a supplementary approach to address these psychological challenges and enhance overall care. This pilot randomised controlled trial aimed to examine the feasibility, acceptability and preliminary effectiveness of the Family ACT-based Eczema Management Program (FACT-EMP). Parents and children aged 6-12 diagnosed with eczema from three outpatient clinics in Hong Kong were randomly assigned to either the FACT-EMP group, receiving four weekly ACT-based sessions plus eczema management education, or a waitlist control group receiving routine care. Feasibility and acceptability were assessed through recruitment, retention and completion rates, supplemented by focus group feedback on parental experiences. Primary clinical outcomes were children's eczema Severity Scoring of Atopic Dermatitis (SCORAD) and parental self-efficacy. Secondary outcomes included parental distress, quality of life, psychological flexibility and self-compassion of both parents and children. From July 2021 to June 2023, 181 of 944 screened parent-child dyads met the inclusion criteria, and 78 were randomised and analysed (parents' mean [SD] age, 41.3 [11.0] years; 70 mothers [89.7%]; children's mean [SD] age, 8.3 [1.9] years; 53 boys [67.9%]). Recruitment, retention and completion rates were 43.1%, 87.2% and 76.9%, respectively. No significant between-group differences in SCORAD scores were observed immediately post-intervention. At 3-month post-intervention, SCORAD scores decreased significantly more in the FACT-EMP group than in the waitlist control group (adjusted mean difference, aMD, -7.73; 95% CI, -13.92 to -1.54). Parental self-efficacy scores also improved significantly more in the FACT-EMP group than the control, with an aMD of 18.69 (95% CI, 13.80 to 33.58) immediately post-intervention and 28.90 (95% CI, 13.93 to 43.84) at 3 months. FACT-EMP is potentially feasible, acceptable and effective in improving children's eczema symptoms and enhancing parents' self-efficacy in disease management over 3 months. NCT04919330.

Experiences and Concerns of Pregnant Refugee Women from Nigeria Seeking for Asylum in Germany - A qualitative analysis

ProblemInsights into and data of the experiences of pregnant women seeking asylum in Germany are largely lacking. BackgroundDue to multiple stress factors, pregnant refugees are considered a vulnerable group. Gender-specific causes of flight, traumatic experiences during flight, and numerous stressors in the respective host country have a decisive impact on the health of women and affect pregnancy and childbirth. AimThis study aims to assess the perspectives and needs of pregnant refugee women from Nigeria, that are residing in an initial reception center in Germany. MethodsExperiences and concerns of N = 20 pregnant refugee women from Nigeria relating to pregnancy and impending childbirth were assessed in semi-structured interviews, conducted by three psychologists in English. FindingsFindings emphasize the need for continuous medical and psychotherapeutic care due to the multiple stressors and the partial lack of social support, especially for single women. The participants described their concerns particularly related to their personal and their family's health, as well as their impending birth, their optimistic attitude about the parenting experience, and confidence in medical care in Germany. Their wishes were predominantly related to items necessary for the care of their children, information about the pregnancy and birth process as well as for their integration. Utilization of resources and positive activities were indicative of adapting coping styles and resilience factors of pregnant refugee women. ConclusionThis study highlights the importance of the context-sensitive medical and psychotherapeutic care to adequately support the women during pregnancy and around childbirth. Furthermore, the study demonstrates the necessity of counteracting the negative effects of experiences on their health and that of their children.

Where Is the Parent's Voice? A Meta-Synthesis of Parental Experiences of Video Feedback Parenting Interventions.

Video-aided feedback (VF) is a well-evidenced intervention technique to enhance the relationship between a parent and their young child. While parental acceptability is foundational to engagement and intervention efficacy, the parent's perspective is only now emerging as a valued consideration when evaluating VF-based interventions. This systematic review metasynthesised qualitative research on the experiences of primary caregivers with a young child (primarily 0-30 months) of participating in a VF parenting intervention. A search of nine databases yielded 17 studies (10 published since 2020) involving parents who had participated in range of VF-focussed programmes. Thematic synthesis identified six themes: (1) Getting past the fear and discomfort: Being 'good enough' and 'doing the right thing'; (2) The power of video: "I had never really noticed that before‟ (with two subthemes: video as validation and for seeing child behavioural intentionality; video as an agent for change); (3) The practitioner's skill and role in creating a safe space; (4) The approach was too intangible, inflexible, positive, unclear; (5) When the intervention is over: Positive change and generalisation; (6) Parental engagement and involvement: Barriers and enhancements. While most parents reported experiencing a range of interpersonal and intrapersonal benefits from taking part in a VF parenting intervention, having to overcome initial strong negative and uncomfortable feelings were an important part of the journey. Some parents could not see the value of the approach or did not perceive the intervention to meet their needs. Insights into parental experience are complementary to outcome-based evaluations. However, biased design (e.g., only one study included intervention non-completers) and variable study quality need addressing in future studies. Implications for practice are discussed.

Exploring the Multifaceted Burdens and Experiences of Parents With a Child Diagnosed With Anorexia Nervosa: A Psychological Network Analysis.

Parents of children diagnosed with anorexia nervosa (AN) are facing multiple burdens when caring for their child. This study uses a psychological network approach to identify central factors among parental caregiving burdens and experiences which then can constitute promising targets for caregiver interventions. A total of 348 parents (247 mothers, 101 fathers) of children diagnosed with AN (96% female, 90% restrictive type) provided data including parental psychopathology, eating-disorder related burden, high-expressed emotion and perceived caregiver skills at baseline and after having participated in a parental skills training, multi-family therapy or systemic family therapy. Regularized partial correlation networks including 14 variables were estimated for baseline and follow-up data were estimated. High-expressed emotion, particularly parental emotional overinvolvement emerged as the most central variable in the network showing substantial correlations with depression and low self-care behavior. Emotional overinvolvement also functioned as a bridge variable between parental psychopathology, perceived caregiver skills, and eating disorder-related burden. Moreover, parental criticism was strongly associated with burden due to the child's confrontational behavior and low levels of parental frustration tolerance. Network comparison tests neither revealed statistically significant differences in network structure and global network strength between baseline and follow-up, nor between mothers and fathers. This study highlights the importance of parental high-expressed emotion as a promising treatment target. Adding or intensifying intervention components promoting parental emotion regulation strategies as well as intensified training in Motivational Interviewing may be useful therapeutic approaches to decrease overall parental burden.

Parental Experiences of Administering Pediatric Tuina for Sleep and Appetite in Early School-Aged Children With Attention-Deficit/Hyperactivity Disorder: Qualitative Study in Hong Kong.

Previous research suggested that parent-administered pediatric tuina could improve symptoms of attention-deficit/hyperactivity disorder (ADHD), such as sleep quality and appetite. This study aimed to explore the experiences and perceptions of parents administering pediatric tuina to school-aged children with ADHD in Hong Kong. This qualitative study was embedded in a pilot randomized controlled trial on parent-administered pediatric tuina for improving sleep and appetite in school-aged children diagnosed with ADHD. Purposive sampling was used to invite 12 parents who attended a pediatric tuina training program and delivered the intervention to their children at home for at least 8 weeks. Data were collected through semistructured focus group interviews and individual interviews, which were audio-recorded, transcribed verbatim, and analyzed using thematic analysis. Two main themes emerged: (1) effects of parent-administered pediatric tuina and (2) parents' experience of administering pediatric tuina. Parents reported significant improvements in children's sleep quality, appetite, behavior, mental state, and academic performance. Facilitators provided professional guidance and applied a user-friendly course design. Challenges included difficulties in mastering techniques, locating acupuncture points, and time management. Participants suggested the need for more traditional Chinese medicine pattern diagnostic sessions, real-time supervision methods, and extended follow-up to better observe long-term effects. Parent-administered pediatric tuina was perceived to improve children's sleep quality and appetite significantly, along with other aspects of well-being. Professional guidance and a structured training program facilitated implementation, and challenges highlighted the need for more frequent diagnostic sessions, real-time supervision, and extended follow-up.

A qualitative study of parental caregiving experience in adolescents with depression from the perspective of positive psychology in China

ObjectiveTo explore the inner experiences and needs of parents of adolescents with depression in the caregiving process, to understand the problems they encounter, and to provide precise intervention and support strategies for this group from a positive psychology orientation.MethodsUse of qualitative research methods, semi-structured interviews were conducted with 12 parents of adolescents with depression, selected from December 2022 to October 2023. Colaizzi′s seven-step analysis method was used to extract themes.ResultsThe parental caregiving experience for adolescents with depression can be grouped into 3 themes and 8 sub-themes: ① Complex negative emotions (negative emotions at the beginning of diagnosis, negative emotions during the caregiving process); ② Adversity experienced by individuals and families (increased physical and financial burdens, lack of access to professional support information, family dysfunction); ③ Coping and adaptation to adversity (self-growth, actively seeking outside assistance, enhanced family connection).ConclusionParents of adolescents with depression have complex caregiving experiences and face numerous difficulties and challenges at different stages of treatment. Caregivers and medical social workers should focus on the inner experiences and needs of parents at various stages of caregiving. Establishment of a joint care model with a positive psychology perspective to enhance individual and family psychological resilience and a sense of disease benefit.

Black Mothers’ Experiences of Having a Preterm Infant: A Scoping Review

Black mothers with preterm infants face unique challenges during their stay in the NICU and after discharge. Racism-related barriers impact access to care for Black preterm infants. Understanding their experiences in caring for preterm infants is crucial to developing equity-focused interventions to address racism in the NICU and promote Black preterm infant health outcomes. The purpose of this scoping review is to shed light on Black mothers’ experiences of having a preterm infant. A search was conducted in CINAHL, Medline, Maternity and Infant Care, and Google Scholar. A total of 287 articles were retrieved and screened. Twelve (12) articles included in the final review were from the United States. The findings highlight the need to address racism among healthcare providers in the NICU through training and education. Gaps in understanding the experiences of Black parents with preterm infants from other Western contexts remain and require further research.

Parent experiences of child loss in a paediatric intensive care unit on human connection and compassionate care.

The death of a child in an Intensive Care Unit (ICU) is a rare event, the main causes being failed resuscitation efforts, brain death or limitation of the therapeutic effort. The family interpretation of this experience has a significant impact on mourning. Knowledge of the elements that condition this interpretation, is fundamental to be able to accompany and care. General: to explore the experience of families who have suffered the loss of a child in the PICU. Specific: to describe the experience of "human connection and family centred compassionate care". A qualitative phenomenological study was carried out in the PICU of a high complexity hospital. Thirteen interviews were conducted (11 mothers/9 fathers), with an average duration of 60 min until thematic saturation. Data were analysed following Van Manen's hermeneutic approach. Compassionate family-centred care is based on the human connection between care team and family system with the objectives of: recognising care as a family affair, promoting a collaborative approach to care and strengthening family bonds. Their achievement requires: informing/training parents about the disease process and care, involving them in decision-making, facilitating their participation in care, generating spaces for honest communication with the care team, facilitating care respire and sibling visits, making, promoting "family magic spaces", and generating family memories. The experience of losing a child in the PICU is conditioned by the care team's approach to the management of the families' suffering. The co-creation of a relationship space centred on their needs and mediated by sincere communication and real collaboration is valued as a valuable gift.

Enhancing Meaningful Parent Engagement: Exploring Roles and Perceptions of Parent Representatives on State Interagency Coordinating Councils

State Interagency Coordinating Councils (SICCs) play vital roles in decision-making for Part C of the Individuals with Disabilities Education Act (IDEA). While parent representatives are required to serve on SICCs, it is unclear how parents participate in the SICC. It is important to understand parent experiences on the SICC given the family-centered nature of early intervention. This study utilized qualitative inquiry to detail the motivations, goals, and expectations of 15 parent participants who served on their state’s SICC and examine the link between their initial expectations and their actual roles. Barriers and facilitators to parent engagement are also presented. Findings reveal diverse motivations and expectations. Most parent representatives reported feeling valued, but some perceived their contributions as obligatory. Active solicitation of parent perspectives and leveraging their unique skills enhanced their sense of impact. The study highlights the importance of actively eliciting and valuing parent perspectives within SICCs and intentionally engaging diverse members of each state to strengthen their impact on early intervention policy and promote positive systems change within the Part C system.

Exploring the experiences of parents of gifted students regarding bullying

Bullying in schools remains a significant issue that affects all students involved, particularly the parents of gifted students. While the prevalence of bullying among gifted students has been examined, the experiences of parents whose gifted children have been victims of bullying have largely been overlooked. This study explores the bullying experiences of gifted students from the perspectives of their parents. A total of 13 parents of gifted students (11 mothers and 2 fathers) participated in semi-structured interviews to share their insights. Thematic analysis identified three key themes: victimization, factors influencing the bullying of gifted students, and parental responses to their children’s victimization. The findings emphasize the importance of understanding the experiences and reactions of parents of bullied gifted students in order to effectively prevent and address bullying incidents. The implications of this study are discussed in the context of strategies for preventing bullying victimization among gifted students.

Perspectives on Swedish Regulations for Online Record Access Among Adolescents With Serious Health Issues and Their Parents: Mixed Methods Study.

With the increasing implementation of patient online record access (ORA), various approaches to access to minors' electronic health records have been adopted globally. In Sweden, the current regulatory framework restricts ORA for minors and their guardians when the minor is aged between 13 and 15 years. Families of adolescents with complex health care needs often desire health information to manage their child's care and involve them in their care. However, the perspectives of adolescents with serious health issues and their parents have not been studied. This study aims to qualitatively and quantitatively investigate the perceived benefits and risks of ORA and the awareness of and views on ORA regulations among adolescents with serious health issues and their parents in Sweden. We used a convergent mixed methods (qualitative and quantitative) design, consisting of a survey and semistructured individual interviews with adolescents with serious health issues (aged 13-18 y) and their parents. Participants were recruited via social media and in clinics. Quantitative data were presented descriptively. Interviews were audio recorded, transcribed, and analyzed using inductive thematic content analysis. The survey population included 88 individuals (adolescents: n=31, 35%; parents: n=57, 65%). Interviews were completed by 8 (26%) of the 31 adolescents and 17 (30%) of the 57 parents. The mean age of the surveyed adolescents was 16 (SD 1.458) years, and most of the parents (29/57, 51%) were aged 45 to 54 years. The surveys indicated that most of the parents (51/56, 91%) were critical of the access gap, and most of the adolescents (20/31, 65%) were unaware of the age at which they could gain access. In the interviews, adolescents and parents identified benefits related to ORA that were categorized into 6 themes (empowering adolescents, improved emotional state, enhanced documentation accuracy, improved partnership and communication, supported parental care management, and better prepared for appointments) and risks related to ORA that were categorized into 4 themes (emotional distress and confusion, threatened confidentiality, increased burden, and low usability). Adolescents' and parents' views on ORA regulations were categorized into 3 themes (challenges of the access gap, balancing respect for autonomy and support, and suggested regulatory change). In Sweden, ORA regulations and a lack of available information cause significant inconvenience for adolescents with serious health issues and their parents. Views on access age limits differed, with adolescents expressing their perceived need for independent access, while parents exhibited concerns about adolescents having ORA. The findings indicated the importance of increased education, dialogue, and flexibility to uphold confidential and consistent delivery of adolescent health care. Further exploration is needed to understand the experiences of adolescents and parents in diverse clinical and geographic contexts, as well as the perspectives of pediatric health care professionals on restrictive ORA regulations.

Mapping the relationships among bullying, cyberbullying, child maltreatment, and parental intimate partner violence: A network analysis.

This study investigates the connections among various forms of violence experienced by adolescents, both online and offline, including bullying, cyberbullying, child maltreatment, and witnessing parental intimate partner violence (IPV). The aim was to elucidate the patterns of these adversities to enhance understanding from a child-centered perspective. We conducted an online survey with a sample of 934 parents (Mage = 41.05 years, SD = 4.76; Mchild's age = 14.37 years, SD = 1.84) recruited across 30 provinces and districts in China in August 2023. Network analysis was used to examine the associations among four types of bullying (physical, verbal, relational, and cyberbullying), three types of child maltreatment (physical, psychological, and neglect), and two types of parental IPV (psychological and physical). Our findings revealed that cyberbullying victimization had the highest expected influence in the network, suggesting that it plays a central role in exacerbating other adversities. The four types of bullying were strongly interconnected, both online and offline. Parental psychological IPV and child psychological abuse experiences had the highest bridge expected influence in the network, indicating their role in linking various forms of victimization. The findings demonstrate that IPV can facilitate the transmission of adversities across different domains of a child's environment. Understanding the intercorrelations of child victimization within and beyond the home can contribute to the development of a comprehensive child protection approach. (PsycInfo Database Record (c) 2025 APA, all rights reserved).

Rethinking transnational parenting: Chinese immigrant parents’ family separation during COVID-19

ABSTRACT Despite recent studies on cross-border immobility associated with COVID-19, little attention has been paid to the resulting prolonged separation of transnational families. This study attempts to fill this gap by examining the experiences of immigrant parents who were separated from their young children across national borders during the pandemic. Drawing on 42 in-depth interviews with parents of Chinese transnational families in Spain, this study examined the impact of global mobility restrictions related to the COVID-19 pandemic on transnational immigrant families’ separation experiences. Our findings indicate that following the disruptions caused by the pandemic, immigrant parents had to postpone family visits and reunification with their children, ultimately causing stress and frustration. The disruptive life experiences caused by COVID-19 have raised awareness of the distance between immigrant parents and led Chinese families to rethink their transnational parenting practices. This study contributes to our knowledge of transnational parent−child relationships and how they are shaped by (im)mobility regimes and state interventions in times of crisis. Beyond the context of COVID-19, this study calls to look beyond the current frameworks of structural constraints on immigration policies and extend attention to the uncertainties associated with the changing global context in which transnational parenting is embedded.

Development of the PRECIOUS Short-Form (PRECIOUS-SF) quality of care measure for children with serious illnesses

BackgroundRising number of children with complex medical conditions necessitate regular healthcare quality evaluation to achieve optimal outcomes. To address the need for a periodic and quick assessment of quality of care in serious childhood illnesses, we developed a short version of previously validated 45-item PaRental Experience with care for Children with serIOUS illnesses (PRECIOUS) measure.MethodologyPRECIOUS was administered by parents of children living with serious illnesses at two time-points (baseline and two weeks) in an online survey. PRECIOUS Short-Form (PRECIOUS-SF) items were derived from the full PRECIOUS measure, which comprises five scales, using an exploratory factor analysis and best subset regression. The measurement properties of PRECIOUS-SF scales were assessed using the concurrent validity using Pearson correlation (r) with the PRECIOUS scales, internal consistency (Cronbach’s α) within each scale, convergent validity with overall QoC rating, and test-retest reliability (intraclass correlation coefficient, ICC) between baseline and two-week responses.ResultsPRECIOUS-SF included 10 items across four scales – (1) access to financial and medical resources (2), collaborative and goal-concordant care (3), caregiver support and respectful care and (4) reduction of caregiving stressors. A fifth and optional scale was suggested for hospitalization-specific processes. PRECIOUS-SF scales correlated strongly with corresponding PRECIOUS scales (r = 0.91 to 0.98) and demonstrated satisfactory internal consistency (α = 0.77 to 0.91) and test-retest reliability (ICCs > 0.70).ConclusionsPRECIOUS-SF demonstrated internal consistency, convergent validity, test-retest reliability, and concurrent validity with PRECIOUS. PRECIOUS-SF offers a practical tool for routine quality of care assessment in pediatric serious illnesses for promoting timely service evaluation and quality improvement.

Parent and Carer Experiences of Health Care Professionals' Communications About a Child's Higher Weight: a Qualitative Systematic Review.

The objective of this systematic review was to identify, critically appraise, and synthesize the best available qualitative evidence on parent and carer experiences of communications by health care professionals (HCPs) concerning children's higher weight. A child's higher weight can be a sensitive issue to discuss in health care, but successful communication with parents can increase parental compliance with treatment and improve overall family welfare. Public discourse on obesity has shifted in recent years and created pressure to change the way that weight is discussed in health care. It is, therefore, important to explore how parents and carers experience the communication about children's higher weight to ensure an effective, up-to-date, and ethical counseling on childhood obesity. This qualitative review included studies that focused on the experiences of parents or carers of children (birth to 12years) with a higher weight who received a verbal or written communication from HCPs about their child's weight. The following databases were systematically searched from 2010 onward: MEDLINE (EBSCOhost), CINAHL (EBSCOhost), PsycINFO (Ovid), Scopus, LILACS, and the Finnish health sciences database MEDIC. ProQuest Dissertations and Theses (ProQuest) were searched for unpublished articles. The search was conducted in July 2022 and updated in October 2023. No country or language limits were applied. A manual search was used to supplement the database searches. Study selection including title and abstract screening, full-text screening, and critical appraisal and data extraction were performed by 2 reviewers. The research findings were categorized and aggregated into synthesized findings. The synthesized findings were assigned confidence scores and categories and finalized synthesized findings were agreed upon by all reviewers. The 33 studies included varied in qualitative study design and methodological quality. There were over 900 eligible participants (parents and carers) and 147 unequivocal and credible research findings. The research findings yielded 8 categories and 3 synthesized findings with low confidence scores. The synthesized findings were: i) Parents receiving communication on a child's higher weight experience strong feelings that can affect their parenting, ii) A health care professional's active and individual communication, with the sensitive use of words, creates a good communication experience for parents; and iii) Parents want to receive information about the child's higher weight that is useful to them and is based on an acceptable weight estimation. Although confidence in the synthesized findings is low, the results of this review indicate that communication on a child's higher weight in health care should meet the parents' expectations and the family's situation and needs. Having the skills to deal with heightened emotions, the expertise and empathy as a professional, and providing appropriate information create a good communication experience for the parents. In addition, parents' desire to protect their child and the strengthening of the parenting experience should be acknowledged to conduct safe communication.

Navigating Hope and Complexity: Turkish Parents' Experiences with Savior Siblings.

Preimplantation genetic diagnosis (PGD) with human leukocyte antigen (HLA) typing represents a significant advancement in treating inherited hematological disorders, particularly thalassemia major. This technology enables the birth of healthy children who can serve as compatible stem cell donors for their affected siblings. Turkey is a world leader in both PGD+HLA typing technology and hematopoietic stem cell transplantation from savior siblings born through PGD+HLA typing. This study investigated the experiences of Turkish parents who underwent successful savior sibling procedures using preimplantation genetic diagnosis (PGD) with human leukocyte antigen (HLA) typing and then successful hematopoietic stem cell transplantation, from this savior sibling, for the treatment of their thalassemia major child. The research aimed to understand the medical, psychological, and socio-cultural dimensions of this complex process within the Turkish healthcare context. A qualitative study using descriptive phenomenological approach was conducted. In-depth interviews were performed with 16 parents, who successfully completed PGD+HLA matching and subsequent successful stem cell transplantation process from this savior sibling to their thalassemia child. Data were analyzed using Colaizzi's seven-step method and MAXQDA 20.0 software. Analysis revealed six main themes: Disease Stage, Treatment, Recovery Process, Social Family, Support Systems, and Recommendations. Parents reported significant emotional challenges but demonstrated unexpected resilience. Religious and cultural factors played nuanced roles, with most parents viewing the process as compatible with their beliefs. Economic burden, prolonged hospitalizations, and geographical access to treatment centers emerged as key challenges. Extended family support and healthcare professional guidance were identified as crucial support mechanisms. The study highlights the complex interplay between advanced medical technologies and traditional values in Turkish society. Findings emphasize the need for comprehensive, culturally sensitive support systems and long-term follow-up for families. Results suggest implementing multidisciplinary care teams and developing specialized support programs for families undergoing savior sibling procedures.