Experiences Of Parents Research Articles

"Hanging on by a Thread": The Lived Experience of Parents of Children with Medical Complexity.

Families with children with medical complexity endure high levels of chronic and toxic stress, impacting the overall health and wellbeing of all family members and the system as a whole. The purpose of this study was to examine the lived experiences of parents/caregivers with children with medical complexity. The lived experiences of 15 parents of children with complex medical needs were explored using focus group discussions. Focus group discussions were recorded, transcribed, and analyzed using van Manen's 6-step process for hermeneutic phenomenology. Aligned with the research questions, the analysis draws on van Manen's four lived existential analytical categories. Themes include: (1) lived body, the psychological and physiological effect; (2) lived time and space, the immediate impact on the there, now, and then; (3) lived relationships, social life and family relational effect; (4) risk factors; and (5) protective factors. Caregivers of children with medical complexity have a unique experience of trauma and resilience. This study will inform interdisciplinary medical providers about the mental health and resiliency experiences of this population to support more effective healthcare practices.

Experiences and the psychosocial situation of parental caregivers of children with spinal muscular atrophy against the background of new treatment options: a qualitative interview study

BackgroundSpinal muscular atrophy is a rare neurodegenerative disorder in children which leads untreated to muscle wasting, respiratory impairments, and a shortened life expectancy. Parents as primary caregivers are often physically and psychologically burdened. In recent years, new and promising treatment options have been approved, but it remains unclear if they have an impact on the psychosocial situation of affected families.ObjectivesThe aim of this study was to explore the views and experiences of parents as informal caregivers of children with SMA in the course of the disease against the background of new treatment options (Spinraza® or Zolgensma®).MethodsWe conducted qualitative interviews with 27 parents of children with SMA treated with Spinraza® and Zolgensma® from April to September 2020. The analysis was done using thematic analysis and reported according to the COREQ criteria.ResultsThe data analysis resulted in three main themes: a) caregiver burden and negative consequences for families, b) resources and protective aspects, c) psychosocial care needs. The results are discussed against the background of new treatment options and previous models of supportive care needs. Parental caregivers of affected children face multiple burdens in different stages of the child’s disease progression.ConclusionAlthough new treatment options for SMA showed observable effects for most parents, the main caregiver burden and reported symptoms were attributable to the overburdening care tasks. To unburden families, more screening for unmet needs, family-centered help services, professional caregivers, childcare, and sufficient financial support are needed.

Communication, Socialization, and Literacy for Adults With Developmental Disabilities: An Interview Study of Parents' Perspectives and Experiences.

The study highlights the significance of continuous support and services in communication, socialization, and literacy skills for adults with developmental disabilities (DDs). The aim of the study was to gather in-depth information on the individualized needs, lived experiences, and expectations of adults with DD by interviewing their parents. A total of 14 parents of adults with DD participated in one-on-one semistructured interviews. During the interviews, parents were asked to describe (a) their children's current communication, socialization, reading and writing skills; (b) the types of communication, socialization, and literacy support their children were receiving; and (c) the types of support that their children needed. Interviews were video- and audio-recorded, transcribed, and analyzed qualitatively using thematic analysis. Thematic analysis revealed three main themes and eight subthemes: (1) insufficient support and services for adults with DD (i.e., lack of competent professionals and lack of literacy support), (2) approaches that the parents attempted for their children with DD (i.e., parents' responsibilities, technologies, and pseudoscience), and (3) recommendations for ongoing support and services (i.e., novel technologies, social media, and motivation). The study highlights crucial gaps between the participating parents' desire for individualized, consistent, and innovative support and services for their adult children with DD and scarcity of resources in communication, socialization, and literacy. The dearth of evidence-based support and resources leads to easy access to pseudoscience. Future research is warranted to develop innovative, customized, and highly motivating programs in communication, socialization, and literacy for adults with DD. https://doi.org/10.23641/asha.27214407.

Parental Involvement in the Care of Hospitalized Children: A Qualitative Study in the Tamale Metropolis

Introduction There is a growing appreciation that parents play a critical part in promoting the health outcomes of their hospitalized sick children. This is because parents want to be involved in the care of their children to allay parental anxiety and promote cooperation from children. After all, children feel insecure in an unfamiliar environment. Objective The main objective of the study was to gain a deeper understanding of parental involvement and experiences in the care of hospitalized sick children in Tamale Metropolis. Methods A descriptive exploratory design with a qualitative approach was used for the study. Thirteen parents of sick children on admission at the children’s unit of the Tamale Metropolis were interviewed for the study. Data were analyzed using thematic analysis (TA). Results The study revealed that participants in the study demonstrated basic knowledge and understanding of parental involvement in the care of hospitalized sick children and shared some of the benefits of parental involvement as improved interaction with health workers, healthier and happier children as well as promoting the early detection of the signs and symptoms of illnesses in children on admission. Some of the barriers to parental involvement include language barriers, poor communication between healthcare providers and parents, financial challenges and institutional challenges. Many participants also reported that sources of parental involvement were the media and healthcare workers. Conclusions Findings from the study indicate that the majority of participants have a fundamental idea about parental involvement. To improve parental involvement in the care of sick children, stakeholders must engender a collective approach that sensitizes the general public and health workers toward acceptance and incorporation into healthcare delivery.

Early identification and communication in cerebral palsy: Navigating a collaborative approach for neonatal follow-up programmes.

This article will provide a clinical case demonstrating the implementation of early identification and review the tools and findings and the diagnostic approach. We will review highlighted literature on the subject of communicating a diagnosis. While improved function is a critical goal, the process of communicating the diagnosis of CP can be challenging for both parents and providers. It aims to provide insights on the evidence supporting early identification and discusses strategies for effective communication of crucial information. The article reviews the literature on communication of a diagnosis. Thirteen articles were identified relating to the communication of a diagnosis of CP and parent experience. We examine this evidence, leveraging the knowledge of an interdisciplinary team and incorporating feedback from parents. Strategies for effective communication include engagement with families, community therapy teams and all medical providers. Consistent, individualised, collaborative communication is critical. Awareness of ableism and use of balanced, value-neutral terminology is recommended.

The Experiences of Motor Skill Development in Children with Autism Spectrum Disorder (ASD) Reflected through Parental Responses.

Background/Objectives: Understanding movement development in children with autism spectrum disorder (ASD) is critical for creating effective intervention strategies. This study aims to explore parental perspectives on the movement development of children with ASD, focusing on identifying common challenges and successful strategies. The objective is to analyze the experiences of parents to highlight the most effective approaches to support motor, communication, and social skills development in these children. Methods: Using a qualitative approach, we conducted in-depth interviews with parents of children with ASD. The data were analyzed using open and selective coding to identify key themes related to movement development challenges and strategies. The analysis included cross-referencing with the existing literature to support parental insights. Results: This study identified several key themes, including communication barriers, social interaction difficulties, and the importance of personalized movement programs. Parents reported significant challenges in understanding and addressing their children's movement needs, particularly in group settings. However, activities such as water programs, music and dance, and animal-assisted therapies were found to be highly engaging. Motivation was a critical factor, with rewards and active parental involvement enhancing participation. Conclusions: This study highlights the crucial role of a supportive environment, including professional guidance and family support, in the success of movement development programs.

Experiences of parents with very premature-born children at risk of neurodevelopmental disorders: A qualitative study.

Premature birth is a traumatic and stressful situation for parents who are immediately separated from their infant because of the newborn's need for specialized care. The staff of these units are in charge of following the principles of family-centred care and practices for neonates at risk of neurodevelopmental disorders, including providing training to the family during their hospital stay and after being discharged. The aim of this study is to explore the perceptions of parents of premature children at risk of neurodevelopmental disorders in regard to care, interventions and assistance provided during the first months of their child's life. A qualitative descriptive study was carried out through individual interviews. The data analysis was conducted through a thematic analysis. The methodology and results were reported following the standards for preparing qualitative research reports and recommendations. Twenty-one parents of premature children were interviewed. From these interviews, three main themes emerged: (i) parents' perspectives on preterm birth risk communication, (ii) navigating parental support and early interventions in preterm birth and (iii) perceptions of preterm birth protective and challenging factors. The parents of premature children need to receive better communication about the care and interventions for their child, and it is necessary that health personnel are better trained in terms of management and administration of public resources. Strategies must be implemented that continuously guide parents on the follow-up and care of their premature child not only during their first moments of life but also after being discharged from the hospital. This study highlights the need to improve care for parents with premature infants at risk, emphasizing the necessity for health care system reforms and support structures, allowing health care professionals to enhance attention and care.

Knocking on locked doors; a qualitative investigation of parents’ experiences of seeking help for children with eating disorders

ABSTRACT Objective The impact of eating disorders in adolescents extends to the whole family, particularly the parents. These parents are uniquely positioned as their children’s case manager, feeder, and advocator, often with little experience or training to guide them. This investigation aimed to develop an in-depth understanding of the experience of parents seeking help for children with eating disorders. Method Semi-structured interviews were conducted with eight parents who had accessed treatment for their child’s eating disorder within the past 3 years through the Australian health system. Interpretative phenomenological analysis was used to understand their experience. Results Two main themes and six subthemes were identified: Parental Gauge on High (“trusting parental instincts”, “desperation for a compass and map” and “discarded expertise”), and Disappointment in the Healthcare System (“GP’s casual responses to serious cases”, “treatment lucky dip” and “the whirlwind of re-engagement”). Conclusions The findings highlight the difficulties in identifying symptoms and seeking initial help as well as the ongoing toll on parents to navigate the health system and support their children. Findings of the study suggest a need for ongoing, inclusive, and holistic support to help parents navigate care for their children.

The Lived Experience of Parents of Children and Youth With Special Healthcare Needs on Public and Private Insurance

The Lived Experience of Parents of Children and Youth With Special Healthcare Needs on Public and Private Insurance

A lost opportunity: did the Disability Royal Commission let down parents with intellectual disabilities and their children?

This article considers the response of the Disability Royal Commission (the Commission) to the experiences of the estimated 21,000 Australian parents with intellectual disabilities and their children. Research shows that interlocking complex social disadvantage and ableist professional attitudes toward parenting by people with intellectual disabilities persist, leading to very high rates of child protection and child removal. The approach taken by the Commission to examination of violence, abuse, neglect, and exploitation against parents with disabilities as a group led to the invisibility of parents with intellectual disabilities within the Final Report. The life course approach was narrowly conceived and did not fully capture reproductive justice across the life course. The issue of parenting and child protection contact was primarily considered in relation to First Nations families, which brought critical attention to some aspects of systemic violence and abuse, but issues and experiences of non-Indigenous parents with intellectual disabilities were absent. We argue that these and other flaws prevented the Commission from making important recommendations in relation to legal and policy reform to uphold the rights of people with intellectual disabilities to become parents and to receive the support they need for parenting over the life course.

Being a parent with a physical disability: A systematic review.

There is a significant gap in the literature with regards to the synthesis of qualitative research that explores the parenting experiences of parents with physical disabilities. This systematic review aims to synthesize the evidence regarding the experiences of parents with acquired and congenital physical disabilities. This article presents a thematic synthesis of qualitative research carried out in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Studies were identified through searches of Cumulative Index to Nursing and Allied Health Literature, PsycINFO, PubMed, Scopus, and Web of Science databases and backward snowballing. The Critical Appraisal Skills Programme qualitative checklist was used as a quality assessment tool. Eleven articles were included in this review, and all were deemed to be high quality. Seven themes were identified: stigmatization and the need to prove competence as a parent; feeling underrepresented as a parent with a physical disability; environmental limitations; experiences of accessing support; using skills and strategies to fulfill parenting role; children's roles and reactions, and changes as they grow; and safety, wellness, and health when parenting with a physical disability. The findings emphasize the adaptability and resourcefulness of parents with physical disabilities in navigating environments that can be unsupportive, while continuing to prioritize their children's safety and well-being. The need for community peer-support groups and health care professionals who can provide emotional support, further public education with regards to the capabilities of parents with physical disabilities, prioritization of accessibility in public and private spaces, and the development of adapted childcare equipment, were all highlighted. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Investigating the Impact of Caregiver Adverse Childhood Experiences Screening and Pediatrician-Led Discussions on Posttraumatic Stress Disorder Symptoms in a Majority-Hispanic Pediatric Primary Care Clinic Setting

Background: Evidence suggests that screening and provider-led discussions of parental adverse childhood experiences (ACEs) may help identify at-risk families and be linked to positive health outcomes in caregivers and their children. However, the direct effect of ACEs screening and discussions on posttraumatic stress disorder (PTSD) has yet to be studied. Objectives: To determine if screening or provider-led discussions of parental ACEs are associated with inadvertent worsening of PTSD symptoms 1 week after screening. Research Design: Data was obtained as part of a cluster randomized controlled trial to examine the effects of ACEs screening and provider-led discussions on child health care utilization outcomes. Baseline surveys were completed before scheduled infant well child checks (WCCs). Providers were randomized into the standard of care or intervention (discussion) conditions. Intervention providers were trained in delivering brief trauma-informed discussions about the impact of ACEs on parenting during WCCs. Subjects: Caregivers in a pediatric primary care clinic serving predominantly Hispanic and low socioeconomically resourced families (N=179, 93% female, 87% Hispanic). Measures: The Primary Care PTSD Screen for DSM-5 (PC-PTSD-5), Brief Resilience Scale (BRS), and ACEs screening were completed at baseline. PC-PTSD-5 was repeated 1-week after screening. Results: Mixed-effects ordinal logistic regression analysis of PTSD scores from baseline to 1-week postscreening with the full sample showed no significant effect of time [odds ratio (OR)=1.21, P=0.68], group (OR=1.68, P=0.33), or their interaction (OR=0.48, P=0.21). Conclusions: Screening or brief discussion of ACEs with providers trained in trauma-informed care were not associated with worsening PTSD symptoms.

"I Am Forever Changed": A Phenomenological Study of the Existential Experiences of Parents of Children and Young People With Complex Care Needs.

To explore the existential lived experiences of parents of children and young people with complex care needs. An explorative qualitative design. We conducted 16 in-depth interviews with parents of children and young people with complex care needs across Norway from February to May 2022. Data collection and analysis were guided by the theoretical framework of van Manen's phenomenology of practice approach. Four distinct but interwoven themes reflecting the comprehensive and holistic nature of parents' existential lived experiences emerged: lived body: "I am forever changed"; lived space: Seeking sanctuary; lived time: "Time doesn't seem to exist"; and lived self-other: Parents' changing relationships. Parents' ongoing efforts to manage fluctuations in their daily lives profoundly affect the existential aspects of their well-being, suggesting that respectful and attentive nurse-parent relationships can nurture existential growth. There is a crucial need for a genuine nursing presence characterised by an attitude of open sensitivity and attentive listening to parents' existential experiences. Nurses should embrace the opportunity to engage in respectful and attentive dialogues with parents. Acknowledging that the insights emerging from these conversations can improve integrated and personalised nursing services worldwide. Parents of children and young people with complex care needs often experience suboptimal healthcare. Additionally, access to quality healthcare services, particularly in rural areas, is limited, creating inefficiencies and coordination challenges. This study provides nurses, other health care professionals, researchers, and decision-makers with valuable perspectives on supporting parents' existential needs which may significantly impact their overall well-being and coping abilities, contributing to a more compassionate approach to family care. Consolidated Criteria for Reporting Qualitative Research (COREQ). Parents of children and young people with complex care needs provided valuable feedback on the findings and implications of this work.

Parental Experience on Female Circumcision in East Coast of Malaysia

INTRODUCTION: Female circumcision (FC) is a deep-rooted tradition in Malaysia, influenced by religious, cultural, and health beliefs. However, it has drawn criticism for its similarities to Female Genital Mutilation (FGM) in Africa, particularly during the 2018 Convention on the Elimination of All Forms of Discrimination against Women (CEDAW) by the United Nations Human Rights (UNHR). Amidst this backdrop, this study aimed to investigate parents' perspectives and experiences concerning female circumcision, as well as the factors driving its persistence. MATERIALS AND METHODS: This qualitative study used phenomenological approach and 20 in-depth interviews were conducted using a semi-structured questionnaire until data saturation were reached. We employed convenience and snowball sampling methods. The interviews were recorded, transcribed, and analyzed using NVivo 12 software. We used thematic analysis to identify key themes in the data. RESULTS: Three themes emerged from the interviews: (1) FC is a ‘fitrah’, (2) maintaining good health is the main influence; and (3) FC causing no harm. The main influences on this practice are religious, cultural, and health factors. Parents described the procedure as simple and harmless for the baby and themselves, both physically and emotionally. CONCLUSIONS: This research shown that FC in Malaysia is not solely religious but deeply embedded in culture. The blend of cultural and religious aspects makes it a crucial practice for some.

Perceived Impact of Healthcare Relationships and Interactions on Parental Experiences of Prenatal Diagnosis and Termination of Pregnancy for Foetal Anomaly on the Island of Ireland.

The aim of this study was to explore parents' experiences of their relationships and interactions with healthcare professionals (HCPs) during care related to prenatal diagnosis and termination of pregnancy for foetal anomaly (TOPFA). A qualitative approach was used. Participants included 33 parents (23 women and 10 men) from Northern Ireland (n = 11) and Ireland (n = 22) who had a TOPFA. Data collection methods included semi-structured interviews and written narrative accounts. Data were analysed using thematic analysis. Findings confirmed that TOPFA was a traumatic, life-altering experience for parents, impacting their health and well-being. The actions, behaviours and words of HCPs impacted how parents perceived and interpreted their healthcare experiences and their access to services and supports. In relation to this, five themes are presented: (1) the importance of compassionate and non-judgemental care, (2) the value of effective information and communication, (3) the desire for compassionate care for baby and facilitation of memory making, (4) the need for continuity of care and (5) parents' experiences of healthcare relationships during times of legislative change. This research reveals the important role HCPs play in helping parents cope with prenatal testing and TOPFA. Parents who had a positive relationship with an HCP, in which information was communicated effectively and compassionate and non-judgmental care was provided, felt more supported and more able to accept and adapt to their loss. An advisory group composed of parents who had experienced TOPFA and HCPs with experience in caring for such families were involved in the study from the outset, contributing to the design and development of data collection materials, interpretation of the findings and design of dissemination materials.

Exploring the Experiences of Parents Caring for Children with Autism Spectrum Disorder in Nepal

This study aimed to explore the experiences of parents caring for children with Autism Spectrum Disorder (ASD). Ten parents (three males, seven females) with at least seven years of ASD caregiving experience were purposively sampled. In-depth interviews, recorded with consent, were conducted and transcribed, supplemented by phone interviews. Manual analysis of the data revealed common themes and patterns, offering insights into the challenges and experiences of ASD caregiving in Nepal. Parents in Nepal invest significant time and resources into their children's well-being, but identifying atypical behavior, particularly in children with ASD, might lead to stress and complications. Challenges in effective parenting stem from cultural, economic, and knowledge gaps in ASD caregiving. While sharing culture and essential caregiving knowledge aids in stress management, it's insufficient. Local governments and community groups might be offered accessible resources. Similarly, comprehensive support networks, stress management courses, instructional materials, and targeted interventions are necessary to address family-related stress effectively.

155P The experience of parents as they make treatment decisions for their child with spinal muscular atrophy and the factors that influence these decisions: a narrative review

155P The experience of parents as they make treatment decisions for their child with spinal muscular atrophy and the factors that influence these decisions: a narrative review

Thermally Primed Zostera muelleri Seeds Exhibit Higher Germination Rates Than Those From Ambient Conditions.

Seagrasses provide critical ecosystem services such as carbon sequestration, sediment stabilisation and nursery habitat for juvenile fish. Zostera muelleri is ubiquitous within Australian and New Zealand estuaries, however, as a species is relatively understudied. We sourced seeds from a thermally affected east Australian estuary and investigated whether germination rates differed between ambient and thermally affected seeds over a variety of temperatures (16°C-28°C) to determine how seagrass systems might react in a warming climate. Germination for the experiment was low and totalled 5% of all seeds; however, similar numbers are typical in seed germination studies. Germination was highest at 16°C and was enhanced through the simulation of a 48-h freshwater pulse. Thermally affected sites germinated faster and had greater mean maximum germination when compared to control sites regardless of experimental temperature. These findings indicate that Z. muelleri in this system may be exhibiting transgenerational plasticity due to the thermal stress the parent experiences. This result provides an alternate viewpoint to the current literature by suggesting that unknown transgenerational effects may provide Z. muelleri with greater germination plasticity against temperatures expected under predicted climate change scenarios than previously expected.

Parent perceptions of various treatment approaches for PANS and PANDAS

Pediatric autoimmune neuropsychiatric disorder (PANDAS) is characterized by sudden, dramatic onset obsessive-compulsive disorder (OCD) following a Group A Streptococcus infection. Pediatric acute neuropsychiatric syndrome (PANS) refers to sudden, dramatic onset OCD and/or restricted eating triggered by infections and other inflammatory reactions. A variety of treatments have been utilized for PANS/PANDAS; however, there is no “gold standard” intervention protocol. Parental expectations of a given treatment have been found to improve a child's overall treatment experience; however, parent attitudes towards PANS/PANDAS treatments are unknown, which was the purpose of this study. An online survey was distributed to 208 parents of children with self-reported PANS/PANDAS. Treatments were grouped together within overarching categories (i.e., psychotherapy, psychiatric/psychotropic, inflammation/infection mitigation, supplements, lifestyle changes, and surgery). Categorically, parents rated inflammation/infection mitigation interventions and lifestyle changes as most appropriate, and psychiatric/psychotropic interventions as least appropriate. At the individual level, treatments including antibiotics, non-steroidal anti-inflammatory drugs, intravenous immunoglobulin, and family counseling received ratings between “appropriate” and “extremely appropriate” Alternatively, treatments including deep brain stimulation, transcranial magnetic stimulation, antidepressant medications, and exposure and response prevention received ratings between “inappropriate” and “extremely inappropriate.” Study limitations include a lack of gender and race representation in our sample. Findings indicate a need for dissemination of current, relevant research to the parent population as well as further examination of the parent experience throughout onset, diagnosis, and treatment.

Effective components of services for recurrent care experienced parents: A literature review of what works

Recurrent care services aim to reduce the number of repeat removals amongst birth parents who have already ‘lost’ a child through care proceedings. This literature review aimed to identify published evidence about effective components of services to support parents who have experienced repeat removals of their children to care.Searches identified 19 studies that included content relating to the components of service provision within recurrent care services. Across all studies, a range of perspectives were included: birth parents (n = 425); practitioners (n ≥ 151); other professionals (n = 109).The evidence reviewed indicates the importance of relationship-based practice, building a trusted relationship between parents and practitioners, continuity and tenacity in engaging with mothers and a non-judgemental approach. Services should be flexible, holistic and client led, with a long duration of support and a flexible end date. Services should: have a trauma-informed approach; recognise unresolved loss, complex grief and trauma experienced by mothers who have ‘lost’ their children through care proceedings; and provide emotional support, therapeutic support, practical support and advocacy. Services need to have a skilled and multi-disciplinary workforce with robust supervision and ongoing training.