Parental Hope Research Articles

Laying the foundations for lifelong family music practices through Music Early Learning Programs

To lay the foundations for lifelong musical practices, parents need to feel confident using music as a part of their everyday parenting. Music Early Learning Programs (MELPs) can empower parents to use music by laying the foundations for family-based active music-making. Little is known about why parents attend, however, what their aspirations are for their child’s musical engagement now and in the future, or how attendance shapes the way they use music at home. This study investigated parental beliefs, aspirations, and use of music in the home by five families and identified MELP structures that support parenting. The longitudinal case study approach drew on ethnographic methods of data collection. Reasons for attending MELPs were a high value for music, belief that music supports child development, enriched family relationships, and social support. Parental hopes and aspirations from attendance included laying the foundations for lifelong engagement with music. Six MELP structures shaped the way parents used music in the home: voice leading, repertoire, models of interaction, models of attunement and emotional regulation, music use to structure behavior, and models of improvisation. Parental use of MELP experiences at home included singing, music to regulate, and music to scaffold learning.

Effectiveness of Happiness Training on the Pattern of Parent-Child Relationships and the Hope of Parents With Autistic Children

Objectives: Families of children with special needs face many problems. This study aimed to investigate happiness training on the pattern of parent-child relationships and the hope of parents with autistic children. Methods: Twenty-six couples with autistic children who referred to Rafsanjan Autism Clinic, Rafsanjan City, Iran, were enrolled in the study by the census method. Informed consent was obtained from them. Then the parents completed the Schaefer and Edgerton Parent-Child Interaction Questionnaire (1985) and Miller Hope Scale (1988). Next, parents were randomly assigned to the intervention or control groups. Happiness training based on the Fordyce method was performed for eight 1.5-hour sessions per week for the intervention group. The parents of either group completed the questionnaires after training of the intervention group (about 2 months and 3 months later). The Chi-square test, independent t-test, and 2-way repeated-measures ANOVA were used for statistical analysis. The level of significance was set at 0.05. Results: The results of the analysis showed that the changes in the scores of communication (P=0.013), acceptance (P=0.008), control (P=0.005), independence (P=0.040), aggressive non-attachment (P=0.015), and hope (P=0.010) were significant between the two groups at stages of measurement. The scores of all variables increased but the aggressive non-attachment decreased. Discussion: The education of happiness in Fordyce style influenced the interactive pattern of communication and hope of parents with autistic children. Therefore, training of happiness along with other services available to parents of autistic children can also be considered.

Acceptability of transcranial direct current stimulation in children and adolescents with ADHD: The point of view of parents.

Transcranial direct current stimulation (tDCS) is a novel treatment option for attention deficit hyperactivity disorder. To facilitate translation into clinical practice, we interviewed parents of children who have experienced experimental tDCS. A grounded theory approach using open, axial, and selective coding provided seven emergent themes for acceptability: tDCS provides hope for parents, safety tolerability and side effects of tDCS versus medication, burden of treatment, education and trust with care providers, cost and coverage, unestablished tDCS efficacy versus established medication effectiveness, perceived compliance of tDCS versus medication. Results suggest tDCS is acceptable but depends on evidence of effectiveness and regular availability.

Peran Orang Tua dalam Meningkatkan Perilaku Berbicara Santun Anak Usia Dini di RT 04/RW 02 Desa Kajen Margoyoso Pati

This research is a qualitative research that is field research, researchers describe the findings sourced from the field. The research data were obtained from interviews with respondents, consisting of parents and community leaders as well as observations of children in Kajen Village Rt 04 / Rw 02. Data collection techniques used were through observation, interviews, and documentation. While the technical analysis of data includes data reduction, data presentation and verification.From the results of this study indicate that the role of parents in Rt 04 / Rw 02 Kajen Margoyoso Village Pati Regency related in Improving Early Childhood Speaking Behavior is mostly good, smooth and develops according to the development of his age. It's just that they as parents need to know and be aware that, educating children must be with patience and perseverance. Parents can teach polite speaking behavior by familiarizing children with things that are praiseworthy from an early age. Because children are a reflection of the actions of their parents. So that the hope of parents later children can behave and talk politely with everyone.

Ethics in Pediatric Neurology

There are various types of serious pediatric neurological diseases, although the absolute number of children with either of them is small. These children often have life-threatening conditions with severe disability and rely on medical technologies. Each child follows a different illness trajectory, which makes it difficult to predict his/her prognosis. Given the multiple treatment options, it becomes harder to know when "enough" is enough and what is best for the child. When it comes to critical decision-making, we, as healthcare providers, need to develop a trustful relationship with the parents and promote shared decision-making to fulfill their child's best interest. It is crucial to know what the parents hope and fear, and provide them with access to comprehensive, evidence-based information about their child's current and potential healthcare needs. In this article, four complex ethical issues are reviewed. A broad and constructive discussion is long awaited to ensure that these children's lives are enhanced to their best potential and treated with dignity in our society.

“Is This the End or a Bend?”: Navigating Hope at End of Life in Pediatric Oncology (GP708)

•Describe the perspectives of hope of HCPs, parents, and AYAs at the end of life.•Compare the variety of perspectives of hopeful thinking between the groups. Whereas adolescent and young adult (AYA) patients, parents, and health care providers (HCPs) agree that hope is a critical construct at the end of life (EOL), how they define and support it varies. Understanding how and when to diversify hopes beyond “cure” is critically important for effective communication and decision-making. Identify and compare perspectives of hope at the EOL among HCPs, parents, and AYAs. This cross-sectional qualitative study included 4 cohorts of participants: interdisciplinary HCPs who work with oncology patients treated at Seattle Children's Hospital, bereaved parents of deceased AYAs with cancer, parents of AYAs living with advanced cancer, and AYAs with advanced cancer. Trained staff conducted in-person individual semi-structured interviews. Items focused on EOL experiences. Two primary coders conducted qualitative analyses using Dedoose and Atlas.ti software to create themes using a modified grounded theory approach. Consensus meetings with the research team resolved discrepancies and compared themes between cohorts. We conducted N=88 interviews with HCPs (n=19), Bereaved parents (n=15), Parents of living AYAs (n= 22), and AYAs themselves (n=32). Hope was a consistent theme in all interviews, but each cohort described hope differently. Most HCPs suggested that hope equates to cure. Bereaved parents discussed the evolution of their hopes at EOL, while parents of AYAs with advanced cancer expressed concern that hoping for something other than cure was akin to “giving up.” For AYAs, hope was referenced as a source of strength that got them through the day but wasn't necessarily about a cure. Hope is an important part of EOL care that is complex and encompasses meanings among HCPs, families, and patients. As goals of care change, so should conversations about hopes and wishes.

‘In the best case seizure-free’ – Parental hopes and worries before and satisfaction after their child's epilepsy surgery

ObjectiveThe objective of this study was to gain a better understanding of parental hopes and worries before and subsequent experiences two years after their child had undergone epilepsy surgery. MethodsThe parents of 107 children and young people who underwent epilepsy surgery at a single center completed surveys focusing on hopes and concerns before surgery and subsequent experiences at two-year follow-up. Responses were analyzed by thematic analysis. ResultsBefore surgery, parental hopes focus on not only seizure freedom or reduction but also potential improvements in child development and emotional–behavioral functioning. Worries before surgery include not only potential injury or loss of skills but also a concern that the surgical procedure would not lead to an improvement in the child's seizures. The vast majority of parents experienced positive aspects at the two-year follow-up including seizure freedom or reduction but also perceived improvements in behavior, development, and sleep. This suggests that for many, expectations for the surgery were met. A small number of parents reported negative effects of surgery including loss of skills, worsening/lack of improvement in seizure frequency, or negative impact on development. SignificanceFor the majority of parents whose children undergo surgery, expectations are met, and fears are not realized. Knowledge of parental hopes and worries before surgery as well as experiences after the operation is useful for improving pre- and postsurgical counseling.

Can a man also be afraid? Partner communication, anxiety and hope in parents of premature infants

ABSTRACT Premature birth can pose a great challenge on the performance of parental roles by parents of premature infants. Is the relationship of new parents affected by anxiety, which the literature enlists among the core consequences of an increased risk of developmental disorders and hospitalization in the early stages of their child’s life? The aims of this study were to determining the links between the levels of anxiety, hope and partner communication in parents of premature babies, and investigating the associations between their reported hope and anxiety. The research included 69 parents (46 mothers and 23 fathers) of infants born before 37-week gestation. All children were hospitalized throughout the entire study. The results suggest significant relationships between partner communication and anxiety in the investigated fathers. The higher their level of state anxiety, the less support they were willing to provide to their partners, and the higher their level of trait anxiety, the stronger their tendency to depreciate them. In addition, there were significant links between gestational week of birth and the level of anxiety reported by the mothers. The earlier the child was born, the higher was the level of state anxiety associated with the situation in mothers.

Pengalaman Orang Tua dengan Anak yang Mengalami Hospitalisasi di Ruang Perawatan Anak Rumah Sakit Swasta Yogyakarta

Background: When children are hospitalized, parents feel stressed. Fifty percent of parents have severe anxiety and 30% of parents experience panic when their child is first hospitalized.
 Objective: to explore parent’s experience with hospitalized children.
 Methods: This research is a qualitative descriptive study conducted at a private hospital in Yogyakarta. Data was collected in 2017. Participants in the study were selected using purposive sampling. This research instrument uses a questionnaire and interview guidelines. This research has received an ethical cleareance permit from the Ethics Committee of Ahmad Dahlan University. Data analysis use qualitative descriptive.
 Results: Emotional responses that arise in parents are sad, crying, anxiety, and worry, the emotional response of children is crying, fear, anxiety and the appearance of boredom, while the emotional response of siblings is anxiety and worry. The behavior and attitude of parents is to pray and try to be sincere and patient. Parents and nurses give support by providing opportunities for children to play and chat. Parents hope that their children can get well soon and get clear information about their child's condition.
 Conclusion: There are 4 theme in this research, emotional response, the parents behaviour and attitude, Support dan Parents hope.
 
 Keywords: parents expereince, children, hospitalized

Bereaved Parents, Hope, and Realism.

* Abbreviation: HOPE — : Hear Our Parent Experiences Parents of children with serious illness often maintain hope across a child’s illness journey. Historically, the conflict between parental hope and prognostic acceptance has been described as a pendulum oscillating between antithetical states of awareness. In this commentary, bereaved parents partner with interdisciplinary pediatric palliative care clinicians to discuss and challenge the conventional theory in which hope and realism exist as diametrically opposing spaces within which parents vacillate. As parents and clinicians, we offer a reconceptualized model that validates a parent’s ability to experience hope and prognostic awareness simultaneously, avoiding assumptions that conflate hope as misinterpretation or denial. In our discussion, we advocate for health care professionals to consider this framework when partnering with patients and families who carry coexisting hope and prognostic awareness in the context of a child’s progressive illness. For parents of children with serious illness, hope is a uniquely powerful mechanism that enables coping and promotes resilience.1,2 Parents describe hope as a life-sustaining factor,2,3 one that impacts decision-making processes across their child’s illness journey.1,4 Recent data reveal parental hopes to be fluid, evolving across the illness trajectory5,6 and persisting in the face of critical illness and at the end of life.1,6,7 In the setting of serious pediatric … Address correspondence to Erica C. Kaye, MD, MPH, Division of Quality of Life and Palliative Care, Department of Oncology, St Jude Children’s Research Hospital, 262 Danny Thomas Pl, Mail Stop 260, Memphis, TN 38105. E-mail: erica.kaye{at}stjude.org

A Process-Based Approach to Responding to Parents or Guardians Who Hope for a Miracle

When parents or guardians hope for a miracle for their child who is critically ill, ethical and professional challenges can arise. Often, although not always, the parent or guardian's hope for a miracle entails a request for continued life-sustaining interventions. Striking a balance between the pediatrician's conception of good medicine and the parent or guardian's authority requires a response that is sensitive, practical, and ethically sound. In this article, we recommend 3 cumulative steps that promote such a response. First, we recommend ways of exploring essential issues through open inquiry, interdisciplinary dialogue, and self-reflection. As part of this exploration, pediatricians will discover that parents or guardians often have unique ideas about what a miracle might be for their child. The second step includes analyzing this diversity and seeking understanding. We classify the hope for a miracle into 3 distinct categories: integrated, seeking, and adaptive. After the pediatrician has categorized the parent or guardian's hope, they can consider specific recommendations. We detail context-specific responses for each kind of hope. By attending to these nuances, not only will the parent or guardian's perspective be heard but also the pediatrician's recommendation can strike a balance between advocating for their conception of good medicine and respecting the parent or guardian's beliefs.

Mixed method study of quality of life for children with trisomy 18 and 13 after cardiac surgery

Cardiac surgical interventions for children with trisomy 18 and trisomy 13 remain controversial, despite growing evidence that definitive cardiac repair prolongs survival. Understanding quality of life for survivors and their families therefore becomes crucial. Study objective was to generate a descriptive summary of parental perspectives on quality of life, family impact, functional status, and hopes for children with trisomy 18 and trisomy 13 who have undergone heart surgery. A concurrent mixed method approach utilising PedsQL™ 4.0 Generic Core Parent Report for Toddlers or the PedsQL™ Infant Scale, PedsQL™ 2.0 Family Impact Module, Functional Status Scale, quality of life visual analogue scale, and narrative responses for 10 children whose families travelled out of state to access cardiac surgery denied to them in their home state due to genetic diagnoses. Parents rated their child's quality of life as 80/100, and their own quality of life as 78/100 using validated scales. Functional status was rated 11 by parents and 11.6 by providers (correlation 0.89). On quality of life visual analogue scale, all parents rated their child's quality of life as "high" with mean response 92.7/100. Parental hopes were informed by realistic perspective on prognosis while striving to ensure their children had access to reaching their full potential. Qualitative analysis revealed a profound sense of the child's relationality and valued life meaning. Understanding parental motivations and perceptions on the child's quality of life has potential to inform care teams in considering cardiac interventions for children with trisomy 18 and trisomy 13.

Parental experience of hope in pediatric palliative care: Critical reflections on an exemplar of parents of a child with trisomy 18.

The purpose of this study is to analyze the experience of hope that appears in a parent's blog presenting everyday life while caring for a child with Trisomy 18 (Edwards syndrome). The author, Rebekah Peterson, began her blog on 17 March 2011 and continues to post information on her son Aaron's care. The analysis of hope in the blog is carried out using a mixed methodology: initial and focused coding using Charmaz's constructed grounded theory and elements of Colaizzi's method. Each aspect of hope is coded through the blog author's statements, from which three main aspects of hope emerge: hope for the longest possible presence of Aaron with his family, hope for control over situations, pain, and symptoms, and existential facets of hope. These various aspects reveal to what extent the experience of hope is unique. Additionally, analyzing the experience of parental hope uncovers the additional problem of inappropriate communication by health care professionals (HCPs) in intensive care units, particularly when discussing the termination of causal treatment. The problem may be solved through proper education for HCPs and serious consideration of parental involvement in order to properly elaborate guidelines on this issue. The three main aspects of parental hope discussed in this paper might expand knowledge on the issue, helping HCPs to better understand the parents' experience of care and to help sustain parental hope in pediatric palliative care.

Non scholae sed vitae!? An exploration of the role of parents’ future prospects for parenting practices and their view of the usefulness of school for their child’s future

Research on parents’ direct and indirect involvement in their child’s education has shown how parental hopes and aspirations affect their child’s learning. Based on this, this research studies the relation between parents’ views of their own and their child’s future and how these affect parenting practices as well as their ratings of the usefulness of schooling for their child’ future success. Results from a mixed-methods study with 497 parents showed that parents see a broad number of challenges in their child’s future and that fatalistic and hedonistic attitudes affect parents’ anticipatory problem solving, affect management, and granting their child self-direction. Child’s school level and parents’ own educational background also played a role in explaining parenting practices and scepticism toward schooling.

Impact of Multiple Sclerosis on Infertility and Impact of Infertility Treatments on Multiple Sclerosis Relapses in Slovenia: Medical Outline, Legal and Ethical Outcomes

Multiple sclerosis (MS) is an autoimmune inflammatory disorder of the central nervous system. It is common in the reproductive period and can lead to infertility and significant disability. The treatment on multiple sclerosis is recently more successful and enables better quality of life, therefore rising hope and desire for the future parents, also in terms of successful infertility treatments. In this context the couples should be managed concerning the detrimental effect of the disease itself on fertility, detrimental effect of the drugs used for treatment on gonads and in terms of the implementation of drugs used for ovarian stimulation and their impact on the basic disease (MS). Article finds solutions on the legal outcomes in situations where infertility treatments may negatively impact the progress of MS, as well as the solutions on how to (successfully) provide infertility treatments to the patients with MS. It proposes interdisciplinary approach between gynecologists and neurologists to perform required weighting of benefits and risks (burdens), deriving from specific action or treatment, whereas for the patients who shall not undergo infertility treatments due to their medical status, related to MS, it proposes storage of gametes under conditions, set by the law.

Resilience for dropout students with depression in secondary schools in Hong Kong: parental attachment, hope and community integration

ABSTRACTThe objective of this qualitative research is to better understand school dropout students with depression in Hong Kong and how they overcome their adversities. Three girls and five boys participated in the study. The results showed that the Hong Kong cultural context was affected by school competition and the effect of mental health labelling. Jaspers’ phenomenology was utilised to understand the phenomenon of school dropout and depression. The findings illustrated the importance of secure parental attachment, substitute secure attachment, hope, supportive environment and community integration in helping dropout students with depression to overcome adversities. A resilience model for school dropouts with depression is proposed for improving professional practice in Hong Kong.

ETHNOCULTURAL DIFFERENCES IN IMPLICIT REPRESENTATIONS ABOUT A VIABLE PERSON

Aim. The idea of studying implicit representations about a resilient person in the crosscultural context is of great interest in establishing the strategies of resilience. Materials and methods. At first stage, the associative experiment was conducted based on responses to a “resilient person” stimulus. At the next stage, the method of subjective scaling was used. The results obtained were processed with factor analysis using the Statistica 15.0 software. Results. Various factor structures of mental representations of a resilient person were revealed. Conclusion. During the study, it was revealed that ordinary representations about a resilient person in respondents from Russia, Kazakhstan and the USA possess similarities and differences. All respondents associate high resilience with the meaning of life, optimism and love of life. Respondents emphasize a high significance of determination, adaptability, self-development and personal growth. The factor structure of implicit representations in Russian students matched the results of an earlier factorization in adult Russians. Pronounced cross-cultural differences were revealed in associationsregarding family. These associations are significant for students from Kazakhstan and the USA but do not fall into the area of significance for Russians. Young people from the USA perceive the family as something that contributes to one’s resilience. Kazakh students associate resilience with the ability to create and maintain a family, to meet the hope of parents. Kazakh students consider the meaning of life, optimism, humanity, faith in God (Allah), service to him, humility (“not to be proud”) as the main things for maintaining resilience. For Russians and Americans, their pride and self-esteem are considered as more important in maintaining resilience. For Americans, resilience is determined by strength and endurance. Russian students are convinced that a resilient person consists of determination, independence, intelligence, adaptive abilities and success.

Congenital Cardiothoracic Surgeons and Palliative Care: A National Survey Study.

The majority of children with advanced heart disease in the inpatient setting die in an intensive care unit under 1 year of age following multiple interventions. While pediatric cardiology and palliative care provider attitudes have been described, little is known about pediatric cardiothoracic surgeon attitudes toward palliative care in children with advanced heart disease. To describe perspectives of pediatric cardiothoracic surgeons regarding palliative care in pediatric heart disease. Cross-sectional web-based national survey. Of the 220 surgeons who were e-mailed the survey, 36 opened the survey and 5 did not meet inclusion criteria (n = 31). Median years of practice was 23.5 (range: 12-41 years), and 87.1% were male. Almost all (90%) reported that they had experience consulting palliative care. While 68% felt palliative care consultation was initiated at the appropriate time, 29% felt it occurred too late. When asked the appropriate timing for palliative care consultation in hypoplastic left heart syndrome, 45% selected "at time of prenatal diagnosis" and 30% selected "when surgical and transcatheter options have been exhausted." Common barriers to palliative care involvement included the perception of "giving up" (40%) and concern for undermining parental hope (36%). While a majority of pediatric cardiothoracic surgeons are familiar with palliative care, there is variation in perception of appropriate timing of consultation. Significant barriers to consultation still exist, including concern that parents will think they are "giving" up, undermining parental hope, and influence of palliative care on the medical care team's approach.

Flourishing families: Effects of a positive psychology intervention on parental flow, engagement, meaning and hope

Few studies have investigated how positive psychology can be applied in a family context to enhance parenting. This study used an 8-week strength-based intervention on engagement, meaning, hope and flow in a wait-list group design (N=63) within an ongoing larger-scale study in Finland – “Flourishing Families”. Well-being was measured by questionnaires and daily life experiences using the Experience Sampling Method (ESM). Data showed a significant increase in flow in daily life when parents spent time with their child/children. Contrary to the hypothesis, the questionnaires did not reveal any significant increase in engagement, meaning or hope. We conclude that positive psychology interventions may be advantageous to improve parenting and parent-child interaction in daily life, but this may not be evident in parents’ self-report.

Barriers to Palliative Care in Pediatric Oncology in Switzerland: A Focus Group Study

Introduction: For children with cancer, early integration of pediatric palliative care in conjunction with curative treatments is recommended. In Switzerland, pediatric palliative care is mostly provided by an interdisciplinary primary oncology team that is mainly composed of nurses. However, only a small fraction of children receive pediatric palliative care and only a minority of them in a timely manner. The main aim was to identify barriers to the provision of pediatric palliative care in Swiss pediatric oncology. Method: This qualitative study consisted of five focus groups. In total, 29 pediatric oncology providers participated (13 nurses, 11 physicians, 4 psycho-oncologists, 1 social worker). Data were analyzed employing applied thematic analysis. Results: Analysis revealed eleven barriers: lack of financial resources, lack of prejob education regarding pediatric palliative care, lack of awareness in politics and policy making, absence of a well-established nationwide bridging care system, insufficient psychosocial and professional supervision for staff, understaffing, inadequate infrastructure of hospitals, asymmetry of factual and emotional knowledge between parents and providers, cultural aspects, irrational parental hopes, and "the unspoken." Discussion: Awareness should be raised for pediatric palliative care (in particular in demarcation from palliative care in adults) among politics and policy makers which could lead to increased financial resources that, in turn, could be used to improve bridging care, hospital's infrastructure, and team support. More flexibility for care determining factors is needed, for example, with respect to convening team meetings, short-termed staffing, and reimbursement at the interface between inpatient and outpatient services.