Experiences Of Parents Research Articles

Parental and healthcare provider attitudes towards the Healthy Child Programme in England: a qualitative analysis

BackgroundThe Healthy Child Programme (HCP) in England, delivered by Health Visitors (HV) and Nursery Nurses (NN), aims to assess growth and development in pre-school age children. This qualitative analysis aimed to evaluate the perceptions and experiences of HCP providers and parents located in a London borough.MethodsThis qualitative analysis is part of a larger study piloting an automated growth screening algorithm in a London borough. We conducted three focus group discussions; two with parents of pre-school children participating in the pilot study, one in English (n = 6) and one in Sylheti (n = 5), and one with HVs and NNs (n = 11). Sampling was purposeful, and written informed consent was obtained. Groups were facilitated by the same bilingual researcher using semi-structured topic guides. Data were analysed using reflexive thematic analysis and assessed for intercoder reliability.ResultsThree broad themes were identified in the data: (1) lack of clarity around the role of the HV and NN; (2) a lack of resources; and (3) a desire for a preventative service. Underlying these themes was a sense of disempowerment shown by HVs/NNs and parents, as well as systemic issues in terms of the accessibility and practicality of the service. Nevertheless, parents and HVs/NNs all stressed the importance of the service in providing information, reassurance and advice.ConclusionsVarious challenges prevent the HCP from providing equitable and effective care to every child. However, the service was recognised as very valuable by users and providers despite systemic difficulties.

Parent and healthcare professional experiences of critical congenital heart disease in New Zealand to advance health equity

BackgroundHigher odds of survival have been reported in European infants compared to Indigenous Māori and Pasifika infants with critical congenital heart disease in New Zealand. We therefore aimed to understand how to mitigate this disparity by investigating the parent and healthcare professional experiences’ of critical congenital heart disease healthcare in New Zealand.MethodsA prospective qualitative study utilising semi-structured interviews was conducted on a cohort of purposefully sampled parents and health professionals with experience of critical congenital heart disease healthcare in New Zealand. Parents were recruited after a fetal critical congenital heart disease diagnosis and offered two interviews at least three months apart, whilst multidisciplinary fetal and cardiosurgical health professionals were interviewed once. Interviews were recorded and transcribed verbatim before coding, categorization and qualitative analysis.ResultsDuring 2022 and 2023, 45 people participated in 57 interviews (25 parents: 19 mothers, 6 fathers; Indigenous Māori, n = 5; Pasifika, n = 6; Asian, n = 4; European, n = 10; and 20 healthcare professionals: European n = 17). The three lessons learned from participants were: (1) Minoritized groups experience disparate healthcare quality; (2) healthcare systems are under-resourced to provide equitable support for the differential needs of grieving parents; and (3) healthcare systems could engage minoritized families more optimally in shared decision-making.ConclusionsAccording to the experiences of parents and healthcare professionals, persisting inequities in CCHD healthcare quality occur by ethnic group, with the New Zealand healthcare system privileging European families. The concepts from this study could be translated by healthcare leaders, policymakers, and professionals into evidence-based healthcare system improvements to enhance experiences for non-European families more broadly.

Parental perspectives on fertility preservation for their trans and gender-expansive children: Reflections on complexities of autonomy, support, and societal realities

Introduction Navigating fertility preservation poses unique challenges for young transgender and gender expansive (TGE) youths, who must balance short-term concerns like delaying gender-affirming hormonal treatment (GAHT) with long-term considerations of potential infertility. Parents play a crucial role in supporting their TGE children through their gender affirmation journey, which includes discussions about fertility preservation. Aim This study aimed to explore parental feelings and attitudes toward the fertility preservation of their TGE children, acknowledging the diverse perspectives shaped by societal, legal, and personal factors. Methods The study involved 82 parents who completed an online-distributed questionnaire. Participants were parents of TGE youths aged between six and twenty-five years old. The mixed-methods study utilized a tailored questionnaire comprising both open-ended and closed-ended questions. Results Descriptive analysis revealed that a significant majority of parents were aware of the effects of GAHT on fertility, with 65.3% expressing a desire for their children to have their own children in the future. However, parents shared that only 14.5% of children underwent a fertility preservation pathway, while 68.1% did not, citing barriers such as lack of services, cost, and procedural distress. Qualitative analysis identified four main themes: (1) Emotional response, (2) Parental expectations, (3) Parent-Child relationship, and (4) Structural barriers. Discussion Overall, the study underscores the multifaceted nature of parental experiences regarding fertility preservation for TGE individuals, emphasizing the importance of addressing societal norms, personal expectations, and structural barriers to ensure equitable access to reproductive healthcare services.

Hospital and White Coat Fears in Children of Parents Working in the Healthcare Field: A Qualitative Study of Parental Experiences

Objectives: This qualitative study investigates the hospital and white coat fears experienced by children of healthcare professionals, focusing on parental insights and experiences. The study explores the prevalence and nature of these fears, the psychological impact on children, and the strategies employed by parents to mitigate their children's anxieties. Materials and Methods: Thirty parents working in various healthcare roles were interviewed using a semi-structured format. Thematic content analysis was used to analyze the data and identify recurring themes and sub-themes related to the children's fears and coping mechanisms. Results: The analysis revealed several key themes, including fear of medical procedures, separation anxiety, fear of medical equipment, the impact of parental roles, and coping mechanisms. Findings indicate that children's exposure to healthcare environments through their parents' professions heightens their awareness and fear of medical situations. Effective parental involvement and clear communication were identified as crucial factors in alleviating these fears. Conclusion: The study emphasizes the need for targeted interventions and supportive environments in healthcare settings to address these anxieties. Practical implications include recommendations for healthcare providers to create child-friendly environments and policies that support parental presence and psychological preparation for children. This comprehensive understanding of children's hospital-related fears can inform better practices and policies in healthcare settings to improve the psychological well-being of children of healthcare workers

Spatial norms as traversable and gendered: A study of parental experiences of no-kids zones in South Korea

This study examines the emergent yet understudied cultural phenomenon of ‘no-kids zones’ in South Korea, a business policy in commercial establishments prohibiting children and their caregivers from entering its premises. Drawing on 32 in-depth interviews of mothers and fathers with active caregiving responsibilities for young children, we examine the impact of the no-kids zone policies on parents’ everyday childcare experiences in urban consumption spaces. We argue that the rise of no-kids zones, indicative of a lack of social ethos of care, has further intensified unwelcoming sentiments towards children and parents, with mothers particularly subject to gendered stigma and blame around caregiving. We first find that spatial norms traverse; the acceptance and popularization of no-kids zones have in turn led to an expansion of hostile sentiments in urban consumption spaces beyond no-kids zones. We also find that such exclusionary norms manifest in gendered ways, with mothers reporting notably heightened levels of wariness and consciousness about how they are perceived by other consumers. We offer novel perspectives and insights on the intersection of societal norms and spatial configurations which, together shape caregiving experiences within urban consumption spaces. Our work highlights a gendered understanding of the challenges and dynamics parents face as they navigate child-unfriendly spaces.

Immigrant and minority parents' experiences in a neonatal intensive care unit: A meta-ethnography review.

To examine immigrant and minority parents' experiences of having a newborn infant in the neonatal intensive care unit and explore healthcare professionals' experiences in delivering care to immigrant and minority families. A meta-ethnographic review informed by eMERGe guidelines. We conducted a systematic literature review. Studies were included if they explored immigrant or minority parent experiences in neonatal intensive care units and health professional experiences delivering care to immigrant and minority families in neonatal intensive care. Reporting followed ENTREQ guidelines. Database searches included CINAHL, MEDLINE, PubMed, PsycINFO, Scopus and Google Scholar. Boolean search strategies were used to identify qualitative studies. No limitations on commencement date; the end date was 23rd August 2022. PRISMA guidelines used for screening and article quality assessed using Joanna Briggs Institute criteria for qualitative studies. Initial search yielded 2468 articles, and nine articles met criteria for inclusion. Three overarching themes were identified: (1) Overwhelming Emotions, (subthemes: Overwhelming Inadequacy; Cultural Expressions of Guilt; Not Belonging), (2) Circles of Support, (subthemes: Individual Level-Spirituality; External Level-Connecting with Family; Structured Peer-to-Peer Support), (3) Negotiating Relationships with Healthcare Professionals (subthemes: Connecting; Disconnected; Linguistic Barriers). Interactions between healthcare professionals and immigrant and minority parents were the strongest recurring theme. There can be a mismatch between immigrant and minority families' needs and the service support provided, indicating improvements in neonatal intensive care are needed. Despite challenges, parents bring cultural and family strengths that support them through this time, and many neonatal intensive care staff provide culturally respectful care. Professionals should be encouraged to identify and work with family strengths to ensure parents feel supported in the neonatal intensive care unit. Findings can inform policy and practice development to strengthen health professionals capabilities to support immigrant and minority families in neonatal units. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses checklists were used to report the screening process.

Dyadic coping experiences of parents of children with vascular anomalies.

Vascular anomalies (VAs) are a spectrum of rare pediatric disorders that require coordinated care from multiple subspecialists. Parents often struggle to coordinate care for their child's complex rare disorder. Even when they do access expert care, parents of children with VAs report high levels of stress and uncertainty. While previous research has explored parents' experiences navigating care for VAs, we know very little about how parents cope with stress together. Given the effect that dyadic coping can have on individual, couple, family, and child outcomes, we aimed to gain a better understanding of dyadic coping in the context of VAs. We collected data using semi-structured interviews with 27 parents (13 dyads and one individual parent). Data were analyzed using dyadic thematic analysis. Parents experienced stress related to medical, personal, logistical, and financial aspects of their child's healthcare. They relied on eight coping strategies: active coping, seeking emotional support, seeking informational support, cognitive avoidance, distraction, cognitive reframing, acceptance, and internalization. When analyzed together, we found evidence of five dyadic coping dynamics: collaborative, supportive, delegated, separate, and negative. Dyadic coping is complex and multilayered for parents of children with VAs. While the child's diagnosis is considered a shared stressor, both parents may not share preferred coping strategies. Parents of the same child may also be coping with different medical, relational/social, personal, or logistical stressors altogether. Psychosocial interventions designed to facilitate parental coping should address these complex coping dynamics.

Creating a home with a critically ill child: A qualitative study exploring the experiences of parents of children admitted to paediatric critical care following treatment in neonatal care

BackgroundSurvival of children with complex medical conditions has increased over time. Around 5% of children admitted to a neonatal unit (NNU) later have an admission to a paediatric intensive care unit (PICU) in early life. No work to date has explored the needs of parents who have a child admitted to both of these healthcare settings. ObjectiveThe overall aim of this study was to understand parents' experiences as they navigate the transition between admissions to the NNU and the PICU. This paper reports on one of the themes (creating a home) identified inductively from the dataset. MethodsWe used a qualitative research design using semistructured interviews with parents who had a child (or children) who had been admitted to neonatal care after birth and then subsequently were also admitted to a PICU. We recruited a national purposive sample of parents with experiences of having a child treated in an NNU before being admitted to the PICU. We undertook the interviews and transcribed them before taking a reflexive thematic analysis approach. ResultsA total of 15 mothers and three fathers, of 17 children, were interviewed between January and March 2022. ‘We identified ‘creating a home’ as a key inductive theme with three subthemes: (i) developing parental roles; (ii) creating a physical home; and (iii) creating core memories. ConclusionsThere is a growing cohort of children living with chronic health conditions. In this work, we have explored how their parents establish a home whilst often spending significant periods within the public arena of intensive care. Families across settings need support from healthcare professionals to help them develop their role as parents, build a home, and to create memories together.

Building Parental Capacity: Outcomes of a Therapeutic Parent Group Run Concurrently with a Social Skills Group for Their Young Person

Introduction: Raising a child with social communication and emotion regulation challenges, such as those experienced in the context of an autism spectrum disorder (ASD), is associated with family disruption and parental stress. Research shows that parents of children and young people with ASD can experience challenges in managing their child’s behaviour and experience a sense of disconnectedness, a lack of support from the “system”, and a broader lack of understanding within the community. Methods: A therapeutic parent group was held in parallel to a young person group working on social skills. The young person cohort included both boys and girls in early adolescence with neurodevelopmental diagnoses. The parent group provided a space for participants to focus on themselves, tune into their own emotions, and receive support in relation to their lived experiences of parenting. Parental outcomes were assessed using standard measures, and the experiences of the groups were captured qualitatively through focus groups with both parents and staff. Results: The project found that the therapeutic parent group was effective in supporting parents to feel less stressed and more in control, as well as less alone in their parenting journey. Qualitative data indicated that the groups filled an identified need within the service and were engaging and acceptable to parents.

Exploring the Parental Perspectives and Experiences With the Use of a Home Mechanical Insufflation-Exsufflation Device.

A mechanical insufflation-exsufflation (MI-E) device is a commonly used tool for airway clearance in children with an ineffective cough. Whereas the device has been shown to have multiple benefits, limited evidence exists regarding parents' experiences with its home use in the Canadian context. This study's objective was to explore the perspectives and experiences of parents who receive service through the IWK Health Centre and use an MI-E device at home with their child. The study used an interpretive description design. Semi-structured interviews, conducted with 9 participants, were audio recorded and transcribed verbatim. Transcripts were analyzed using a reflective thematic process. Seven mothers and 2 fathers were interviewed. Following analysis, 3 themes were identified: (1) Learning about the MI-E device described participants' journey from becoming aware of the device to acquiring knowledge and skills about its use; (2) using the device detailed the integral role the MI-E device played in their lives, including decisions around use, and parental role; and (3) changing lives outlined the physical, emotional, and social benefits the device provided to the child and their family. Participants provided detailed descriptions of their journey from learning to integrating the MI-E device into their child's daily routine and family life. Its multiple associated benefits improved the child's and their family's quality of life. However, better education on its use was highlighted as a need for both parents and the health care professionals who work with them.

Middle‐Class Versus Working‐Class White Mothers’ Approaches to Diversity in the Netherlands

There is a large body of literature on how white middle‐class parents select schools for their children in gentrifying urban contexts. In this study, we aimed to explore the experiences of such parents after enrolling their children in ethnically mixed schools but also how these experiences varied in gentrifying urban contexts and smaller cities. We interviewed mothers without a migration background living in a large city (Amsterdam) or a medium‐sized city (Tilburg) who had chosen to send their children to an ethnically mixed school in a majority–minority neighbourhood, asking them to reflect on their neighbourhood choice, school choice, and subsequent experiences. Based on our analysis, we developed a typology of parents’ positions towards diversity, whereby they could be described as idealists, pragmatists, and realists. Aligned with previous studies, this article shows that the idealist position on diversity was more common among the white middle classes in Amsterdam, who expressed a positive attitude towards diversity but engaged with it to a controlled and limited extent. However, we also identified a group of mothers, mostly working class but also middle class, who did not take an idealized approach to diversity but embraced it as a lived reality. The study underlines the importance of mothers’ engagement with diversity during their own childhood and youth as an important factor in shaping parenting behaviour around diversity.

Unveiling the Journey: Understanding the Experience of Parents of Children with Autism across the Kurdistan Region of Iraq

Unveiling the Journey: Understanding the Experience of Parents of Children with Autism across the Kurdistan Region of Iraq

Parent attitudes towards predictive testing for autism in the first year of life

BackgroundEmerging biomarker technologies (e.g., MRI, EEG, digital phenotyping, eye-tracking) have potential to move the identification of autism into the first year of life. We investigated the perspectives of parents about the anticipated utility and impact of predicting later autism diagnosis from a biomarker-based test in infancy.MethodsParents of infants were interviewed to ascertain receptiveness and perspectives on early (6-12 months) prediction of autism using emerging biomarker technologies. One group had experience parenting an older autistic child (n=30), and the other had no prior autism parenting experience (n=25). Parent responses were analyzed using inductive qualitative coding methods.ResultsAlmost all parents in both groups were interested in predictive testing for autism, with some stating they would seek testing only if concerned about their infant’s development. The primary anticipated advantage of testing was to enable access to earlier intervention. Parents also described the anticipated emotions they would feel in response to test results, actions they might take upon learning their infant was likely to develop autism, attitudes towards predicting a child’s future support needs, and the potential impacts of inaccurate prediction.ConclusionIn qualitative interviews, parents of infants with and without prior autism experience shared their anticipated motivations and concerns about predictive testing for autism in the first year of life. The primary reported motivators for testing—to have more time to prepare and intervene early—could be constrained by familial resources and service availability. Implications for ethical communication of results, equitable early intervention, and future research are discussed.

Voices of experience: insights from Dutch parents on periviability guidelines and personalisation

ObjectiveTo investigate the perspectives of experienced parents regarding guidelines and personalisation for managing imminent extremely premature births (22–26 weeks gestational age (GA)) . The study examined four scenarios: no guideline,...

Exploring the lived experience of mothers of children with leukemia: a qualitative study from Iran

BackgroundLeukemia, as one of the most common pediatric cancers, has negatively affected many children around the world. Parents often experience increased feeling of distress shortly after being informed about their child’s diagnosis. The distress experienced by parents can adversely affect various aspects of their life. This study aimed to develop an understanding of the lived experience of the mothers whose children suffer from leukemia in Shiraz, Iran.MethodsThis phenomenological study was performed from April to August 2023, and 10 people were selected as participants by purposive sampling. In-depth and semi-structured interviews were performed for collecting the data.ResultsThe participants’ lived experiences during their children's leukemia were classified into five main categories, namely behavioral problems, spiritual issues, psychological problems, issues related to treatment, and economic matters.ConclusionKnowing the experiences of parents, especially mothers, in managing and planning for the care of these children seems essential.

The Role of Patient Organisations-Patients' and Parents' Views and Experience of Hirschsprung's Disease.

In many countries, patient organisations offer advice and the exchange of experiences to Hirschsprung's disease patients and their families. Professional treatment by experienced health care providers and the availability of life-long multidisciplinary follow-up care are essential. However, outside the clinic, patients and their families have to manage life on a day-to-day basis at home, which often brings up uncertainties and questions: Parents go through different stages during the diagnosis and treatment of their child, the affected children themselves go through many different stages of development, and even through the course of adulthood, new questions regarding the chronic disease may arise. Patient organisations can support the patients and their families at all stages of life by listening, offering information in an understandable way, connecting people, and sharing others' experiences. This enables families and patients to develop a better understanding of the rare disease and promotes their management strategies and confidence. The holistic approach of patient organisations aims to complement the medical treatment. Therefore, the referral of all patients and their families to patient organisations should be part of the medical advice in the treatment of Hirschsprung's disease.

Psychometric properties of the toddler feeding style questionnaire in fathers and its gender invariance

Parental feeding practices and behaviours are closely related to a number of child outcomes, including eating behaviour and health. The Toddler Feeding Style Questionnaire (TFSQ) was developed to provide an accurate instrument for evaluating parental feeding practices for toddlers by assessing two dimensions: responsiveness and demandingness. As the initial validation study was conducted in a sample of mothers only, the aims of this study are: a) to validate the TFSQ in fathers, b) to analyse its measurement invariance as a function of gender and parenting experience and c) to explore associations between socio-demographic variables and both dimensions. The TFSQ was completed by 377 fathers and 583 mothers. CFA confirmed the two-factor structure within the same items as the initial validation study, with good model fit indices (X2 = 230.089; TLI = 0.883; CFI = 0.91; RMSEA = 0.08 (90% CI 0.068–0.092), SRMR = 0.070). Strict invariance measurement in terms of gender and parenting experience was achieved. Overall, fathers scored higher than mothers on demandingness, regardless of their parenting experience. Primiparous mothers scored higher than multiparous mothers and primiparous fathers on the responsiveness dimension. However, there were no gender-based differences on this dimension for parents with more than one child. These results confirm that the TFSQ is an adequate and validated instrument for assessing parenting dimensions, as it performs equally well for mothers and fathers, regardless of their parenting experience. There is also support for the notion that parental attitudes to feeding may be related to their socio-economic background.

Parent Experiences of Empowerment: Understanding the Role of Parent Empowerment in Child Health Promotion.

Establishing healthy behaviors during a child's first 5years is essential for healthy growth. Parents are targeted as agents of change because they serve as primary models of behavior during this period. Although parent-focused interventions often target empowerment as a driver of change, our understanding of how parents experience the process of empowerment in the context of child health promotion remains limited. This qualitative study explored the process by which parents gain empowerment through participation in a health promotion intervention. Semi-structured interviews were conducted with 37 low-income parents who participated in Parents Connect for Healthy Living (PConnect), a 10-week empowerment-centered obesity prevention intervention. Data were analyzed using inductive-deductive thematic analysis and guided by empowerment theories. Most parents were Hispanic/Latino (41%) and female (97%). Five themes emerged that correspond to the process by which parents gained empowerment: (1) friendships formed and relationships strengthened during PConnect, (2) parents strengthened relationships with their children and believed in their ability to parent successfully, (3) the experience of knowledge led to behavior change, (4) parents used new resources to improve family health, and (5) parents took action. Empowerment theory should be a component of health promotion programs.

A Cross-Sectional Analysis of Factors Promoting Intergenerational Resilience in Adolescent Youth With Refugee Status.

Adolescent youth occupy a critical and complex position in refugee families who resettle in a third country. We examined the potential impact of health- and family-related factors on the social and behavioral adjustment outcomes of refugee adolescent youth. Situated within an explanatory sequential mixed methods study, we used unadjusted and adjusted multinomial logistic regression to identify trauma, health, and socioecological characteristics of war-affected families associated with social and behavioral adjustment in 72 Karen adolescent youth resettled in the United States. Factors related to the health and well-being of war-affected families, including parent mental and physical health, youth-reported family function, housing, and parent employment demonstrated important associations with youth adjustment. These findings, originating within the complex dynamics of resettled war-affected families, demonstrated the interconnectedness of adolescent and parent experiences and opportunities to advance resilience in youth navigating integration and supporting their families through those same processes.

Corporal Punishment of Young Children: Parents’ Perceptions and Family Practices

ABSTRACT Our study aim was to examine the perceptions and experiences of parents regarding corporal punishment of children during early childhood within the context of traditional families. Participants of this qualitative phenomenological study were parental pairings of 11 preschool-aged children living in Eyyübiye district of Şanlıurfa, Türkiye. Data were collected through participant interviews during home visits and content analysis was followed for data analysis. It was revealed through the findings that parents used various forms of corporal punishment as a means of protecting family dignity as well as disciplining their children. It was also pointed out those traditional and cultural elements including parental respect, patriarchal structure, parental responsibilities of children, religious beliefs, and intergenerational transmission, which shaped how parents utilized and perceived corporal punishment. Finally, our study results were discussed in light of the relevant literature.