Family adjustment and resilience after a parental cancer diagnosis.

PURPOSE: To explore the resources, parents with cancer and their partners draw upon to sustain their family resilience through the cancer experience. METHODS: Fifteen participants who were parents of children aged 8 to 25 years completed phone, audio-recorded, and semi-structured interviews. Of these participants, 11 were parents diagnosed with cancer, and four were partners of a parent diagnosed with cancer. Interview questions aimed to increase understanding about how families communicate, connect, and face challenges from the cancer experience. Interview data was analysed using inductive thematic analysis to provide scope to generate themes from parent's experiences rather than to test pre-existing frameworks. RESULTS: The thematic analysis of interview transcripts generated three key themes related to family resilience: (1) adaptability to changes in roles and routines, (2) open communication within the family, and (3) accepting support from others. CONCLUSION: This study found that parents' ability to use personal resources when faced with significant challenges helped to improve the resilience of parents' family system. Further research is needed to understand the factors that influence family resilience when a parent is diagnosed with cancer. Implications for the development of targeted interventions that provide support to not only the patient, but their whole family system will be discussed.

Engaging Youth Voice and Family Partnerships to Improve Children's Mental Health Outcomes.

Promoting active participation of families and youth in mental health systems of care is the cornerstone of creating a more inclusive, effective, and responsive care network. This article focuses on the inclusion of parent and youth voice in transforming our mental health care system to promote increased engagement at all levels of service delivery. Youth and parent peer support delivery models, digital innovation, and technology not only empower the individuals involved, but also have the potential to enhance the overall efficacy of the mental health care system.

Childhood Interests: what they are and why it matters.

This paper examines the concept and moral significance of "childhood interests." This concept is important in medical decision-making for children and more broadly in the field of pediatric ethics. The authors argue that childhood interests are identifiable components of childhood well-being that carry moral weight. Parents have a special role in protecting and promoting these interests and special obligations to do so. These parental obligations are grounded by the independent interests of the child, as well as the good of society more generally. Because parents have these child-rearing obligations, they must also have the authority and wide discretion necessary to fulfill them. However, while parental discretion is wide, it is not unlimited, for it must be used to safeguard and advance childhood interests.

Pediatric Decision-Making: ethical aspects specific to neonates.

Recently published consensus recommendations on pediatric decision-making by Salter and colleagues (2023) did not address neonatal decision-making, due to the unique complexities of neonatal care. This essay explores three areas that impact neonatal decision-making: legal and policy considerations, rapid technological advancement, and the unique emotional burdens faced by parents and clinicians during the medical care of neonates. The authors evaluate the six consensus recommendations related to these considerations and conclude that the consensus recommendations apply to neonates.

Teenage Development and Parental Authority: applying consensus recommendations to adolescent care.

The consensus recommendations by Salter and colleagues (2023) regarding pediatric decision-making intentionally omitted adolescents due to the additional complexity their evolving autonomy presented. Using two case studies, one focused on truth-telling and disclosure and one focused on treatment refusal, this article examines medical decision-making with and for adolescents in the context of the six consensus recommendations. It concludes that the consensus recommendations could reasonably apply to older children.

Decision-Making for Adolescents with Gender Dysphoria.

Legislation banning gender-affirming medical care (GAMC) for minors is inconsistent with the Consensus Recommendations for Pediatric Decision-Making (Salter et al. 2023). Gender dysphoria is a medical condition, and GAMC promotes adolescents' health interests. The evidence for GAMC is comparable to the evidence for other types of pediatric medical care. Parents are permitted to consent for similar risks in the treatment of other conditions. Evaluation of the potential benefits, risks, and treatment alternatives is contingent on individual patients' clinical conditions and adolescents' and their parents' values and preferences. Such decisions are within the scope of parental discretion and should be made through shared decision-making with health-care providers. Parents' declining GAMC does not inherently create a significant risk of serious imminent harm required to justify state intervention. Usurping parental discretion for GAMC is unjust: it treats this medical care differently than other comparable types of medical care without sufficient justification.

Limits on Parental Discretion in Medical Decision-Making: pediatric intervention principles converge.

Pediatric intervention principles help clinicians and health-care institutions determine appropriate responses when parents' medical decisions place children at risk. Several intervention principles have been proposed and defended in the pediatric ethics literature. These principles may appear to provide conflicting guidance, but much of that conflict is superficial. First, seemingly different pediatric intervention principles sometimes converge on the same guidance. Second, these principles often aim to solve different problems in pediatrics or to operate in different background conditions. The potential for convergence between intervention principles-or at least an absence of conflict between them-matters for both the theory and practice of pediatric ethics. This article builds on the recent work of a diverse group of pediatric ethicists tasked with identifying consensus guidelines for pediatric decision-making.

Pediatric Decision-Making for Children in State Custody.

In summer 2022, six points of consensus emerged from a symposium addressing the question, "In the context of U.S. pediatric care, what moral precepts ought to guide parents and clinicians in medical decision making for children?" (Salter et al. 2023). The authors of this statement wrote, however, that the points of consensus may require modification or may not apply in their entirety to children in state custody. This article addresses the consensus recommendations in the context of the thousands of children removed annually from the custody of their parents. While the consensus statements developed at the symposium provide a good starting point for decision-making in the context of these children, some alterations and nuance must be applied to attend to the specific needs of this population. The article works through what special considerations and changes ought to be made to expand the reach of the original points of consensus without neglecting the particular conditions of children in state custody, as well as their parents and caregivers.

Medical Decision-Making for Children in Families with Siblings: parental discretion and its limits.

This article examines how parents should make health decisions for one child when they may have a negative impact on the health interests or other interests of their siblings. The authors discuss three health decisions made by the parents of Alex Jones, a child with developmental disabilities with two older neurotypical siblings over the course of eight years. First, Alex's parents must decide whether to conduct sequencing on his siblings to help determine if there is a genetic cause for Alex's developmental disabilities. Second, Alex's parents must decide whether to move to another town to maximize the therapy options for Alex. Third, Alex's parents must decide whether to authorize the collection of stem cells from Alex for a bone marrow transplant for his sibling who developed leukemia. We examine whether the consensus recommendations by Salter and colleagues (2023) regarding pediatric decision-making apply in families with more than one child.

Parent's perception of respiratory syncytial virus and subsequent wheezing burden: A multi-country cross-sectional survey.

BACKGROUND: Respiratory Syncytial Virus (RSV) is the leading cause of hospitalization in infants. RSV bronchiolitis is associated with an increased risk of subsequent wheezing. We aimed to document the parents' perception of the link between RSV infection and subsequent wheezing, wheezing-related healthcare and family resources use, and its impact on family daily life. METHODS: This cross-sectional online survey enrolled 1200 parents with at least one child ≤6y living in the United States, United Kingdom, Spain, and Italy. Children diagnosed with RSV bronchiolitis before age of 2 years were included in the RSV group, and those never diagnosed with RSV bronchiolitis in the Reference group. RESULTS: The odds of wheezing were 4.5-fold (95%CI 3.5-5.9) higher in the RSV than in the Reference group. The odds increased to 7.7-fold (95%CI 5.4-11.1) among children who were hospitalized, and 9-fold (95%CI 5.1-16.6) among those admitted to pediatric intensive care with RSV bronchiolitis. Similar trends were observed across all countries. In total, 57% of parents reported their child's wheezing to have moderate to severe impact on their emotional well-being, and 53% on their daily life activities and/or social life. 64% of parents reported moderate-severe impact of wheezing on child's quality of sleep and 49% and 46% reported a moderate-severe impact on their children's emotional well-being and physical activities. CONCLUSIONS: This survey suggests an association between RSV infection and subsequent wheezing in children across different countries. Wheezing, especially in association with RSV infection, was associated with increased healthcare utilization and costs, and significantly impacted parents' and children daily life.

Identifying how pre-existing resources combine to shape the experiences of work and family life of a diverse sample of working parents with at least one child in primary school in Scotland during COVID-19 pandemic-related social restrictions: a qualitative descriptive design.

OBJECTIVES: This study aimed to identify factors that shaped working parents (WPs') experiences of COVID-19-related social restrictions and analyse the relationships between those factors. DESIGN: A qualitative descriptive design was used to collect five time points of data including two online questionnaires and three telephone or online interviews between March 2021 and August 2021 with some follow-up interviews in December 2022. SETTING: The COVID-19 pandemic led to social restrictions which greatly impacted WPs who had to both work and look after their children within their home space without any formal childcare. PARTICIPANTS: 19 participants living in Scotland who had at least one child of primary school age and who had been working in March 2020. RESULTS: All parents were affected by social restrictions during the COVID-19 pandemic, with the flexibility of employers, their socioeconomic situation and the amount of space in their home environment being particularly influential. The impact of social restrictions was greater for lone parents (LPs) due to the inability to share childcare with another adult in the home. Parents in low-income households were affected due to pre-existing inequalities of resources. CONCLUSIONS: These findings indicate several policy options that could mitigate negative outcomes for parents in the case of a future pandemic, including options to lessen inequities experienced by LPs. These include priority access to school places (particularly for children with underlying chronic medical conditions), the ability to establish a 'support bubble' at the beginning of social restrictions and being given access to safe outside places for children without a garden.

See us, hear us! children, adolescents and families in Saskatchewan coping with mental health during the COVID-19 pandemic.

PURPOSE: To examine the lived experiences of children and adolescents coping with mental health issues and seeking mental health services in Saskatchewan during the COVID-19 pandemic. METHODS: In our descriptive phenomenological qualitative study, we interviewed forty-six individuals, including children aged 8-15 and their parents. Thematic analysis was applied to interpret the interview data. RESULTS: Our analysis identified three key themes: pyscho-behavioural impact, academic impact, and social impact. The pandemic adversely affected children due to factors like changes in behaviours such as increased screen time and decreased physical activity, limited access to mental health services, and disruptions to schooling and social interactions. Coping mechanisms varied, ranging from the utilization of available mental health supports and services to individual and family-based strategies. Disparities in timely access to mental health services were evident, with financially stable families accessing private services, while others struggled, particularly in rural areas. Families demonstrated resilience through parental efforts to seek balance and prioritize safety amidst COVID-19 challenges. CONCLUSIONS: Social connectedness served as a crucial buffer against pandemic-induced stress. Children faced difficulty in accessing timely mental health services and supports. Echoing participant experiences, our findings emphasize the urgency of targeted interventions and policy adjustments to address existing gaps in mental health service accessibility and availability.

Moral aspects of filial concern for a parent living with dementia: Social imaginaries in contemporary narratives.

Many adults face the difficulties of a parent living with dementia. Although not always caregiving for a parent living with dementia, they care about and are concerned for the vulnerability of their parent. This concern is invaluable but often an experience with a far-reaching impact. Qualitative research on filial concerns and experiences of caregiving has resulted in a vast body of knowledge about the experience of family carers. Far less research, however, has examined the moral concern of children. The aim of this study is to gain insight into the normative aspects of their concern. An international collection of 24 books written by adult children about their involvement with an ageing parent was analysed using the Dialogical Narrative Analysis method. Our study shows that the stories deal with children's moral questions about independence, identity, and suffering. These questions can be related to social imaginaries of individualism and progress. The two social imaginaries may have both positive and negative impacts on children's ability to cope with their concern for a parent living with dementia. The moral questions that arise from children's concern seem to originate from both the appeal of the vulnerable parent and from the social imaginaries. These moral sources may compete, resulting in moral friction. Children with a parent living with dementia deliberate upon the personal and societal held beliefs and need moral space to embody their concern.

Real-time procedure information sharing as a means to reduce perioperative anxiety in families of children undergoing elective surgery - a randomized controlled study.

OBJECTIVE: To investigate whether the surgical process information sharing system could alleviate the parental anxiety during a pediatric selective operation. DESIGN: Randomized controlled trial. METHODS: A questionnaire survey was conducted one day before surgery for the enrolled participants. Family members assigned to the intervention group received real-time process information sharing through service reminders during the surgical period, while the control group received standard perioperative education. The Pittsburgh Sleep Quality Index (PSQI) was used to evaluate sleep quality during the perioperative period, and the State of Cohesion-13 Scale (SOC-13) and Self-rating Anxiety Scale (SAS) were used to assess anxiety levels. Satisfaction levels during the perioperative period were assessed through a follow-up survey conducted one day after surgery. RESULTS: The intervention group showed better scores in terms of PSQI, SOC-13, SAS, and postoperative satisfaction levels at various time points compared to the control group, with statistically significant differences observed (P < 0.05). CONCLUSION: Real-time process information sharing is effective in reducing perioperative sleep disorders and anxiety among family members of pediatric patients, as well as improving satisfaction levels. This approach not only establishes a process and mechanism for effective doctor-patient communication but also helps implement continuous perioperative care, thereby optimizing internet healthcare services.

The Open Donor View and Procreative Beneficence.

This letter responds to the article "What Do Prospective Parents Owe to Their Children?," by Abigail Levin, in the March-April 2024 issue of the Hastings Center Report.

The influence of actors on the content and execution of a bereavement programme: a Bourdieu-inspired ethnographical field study in Sweden.

Introduction: The death of a parent can have profound negative impacts on children, and a lack of adequate support can exacerbate negative life experiences. Aim: To explore the influences of various actors on the content and execution of a bereavement programme within a Swedish context, considering relational and contextual perspectives. Methods: An ethnographic field study involving six children, their parents, and eight volunteers. A theory-inspired thematic analysis was conducted, methodically inspired by Braun and Clarke, theoretically inspired by Bourdieu's concepts of position, power, and capital. Results: Confidentiality obligation was an essential element in the programme, however, the premisses varied depending on actors' positions. Volunteers and researchers had different outlets to express their experiences in the program. The programme offered the children an exclusive space for talking about and sharing experiences and feelings. Simultaneously, the programme restricted the children by not allowing them to share their experiences and feelings outside the physical space. The physical settings shaped the different conditions for interactions among the actors. The sessions adopted loss-oriented approaches, where communication between volunteers and children was guided by the volunteers. However, children created strategies for additional, voiceless communication with their peers or themselves. During breaks and mingles, shared interests or spaces connected children (and adults) more than their common experience of parental bereavement. Conclusion: The participants in the programme were significantly influenced by the structural framework of the programme, and their positions within the programme provided them with different conditions of possibility for (inter)acting. Children's daily activities and interests were both ways to cope with parental bereavement and connect them to other people.

Inequities in human papillomavirus vaccination among children aged 9-14 years old under constrained vaccine supply in China.

BACKGROUND: Inequities in access to human papillomavirus (HPV) vaccine are becoming a growing critical issue globally. Few studies investigate the factors determining HPV vaccine uptake disparities when vaccine supply is constrained, especially in low- and middle-income countries. The aim of this study was to investigate inequities of HPV vaccination and related factors under the constrained vaccine supply in China. METHODS: A cross-sectional survey was conducted in a developed eastern coastal province and a developing western one in China between November and December 2022. Employing multistage stratified cluster random sampling, the study collected data from parents of children aged 9-14. Mixed-effects logistic regression models with school units as random effects were used for analysis. RESULTS: From 4,127 eligible parents (as vaccine decision makers for girls), 1,346 (32.6%) intended to vaccinate their daughters against HPV, of which 836 (62.1%) attempted to schedule a vaccination appointment. Only 16.4% succeeded in booking an appointment. More than half of the intended parents expected the imported 9-valent HPV vaccine. There were significant disparities in HPV vaccine awareness, intention, and vaccination behavior across educational, income, geographic, ethnic, gender, and health literacy levels. Vaccine awareness and intentions were higher among parents with higher socioeconomic status; however, girls from lower socioeconomic families were more likely to receive the HPV vaccine and had a higher domestically produced vaccination rate. Significant disparities exist in vaccination intentions and actual vaccination behaviors, primarily due to large supply constraints of the HPV vaccine. CONCLUSIONS: Sustained health education campaigns are needed to raise awareness of the HPV vaccine, improve health literacy, and decrease over-preference for the 9-valent HPV vaccine. A mother's HPV vaccination behavior was positively associated with increased intention and actual vaccination behavior for her daughter. This study advocates for complementary cervical cancer prevention programs targeting both mothers and daughters.

Impacts of raising a child with a feeding difficulty in Aotearoa New Zealand.

Economic barriers to accessing support for children with paediatric feeding difficulties can have serious repercussions, including parental stress and emotional fatigue, the child developing a negative relationship with food and health risks such as undernourishment, aspiration pneumonia or choking. We explored the financial and psychological impact experienced by parents and caregivers raising a child with a feeding difficulty in Aotearoa. Respondents were 88 parents or caregivers of a child with a feeding difficulty, living in Aotearoa. Respondents completed an online survey with 34 questions, the majority of which were multi-choice. Open-ended responses provided exemplars and detail. The results indicate that many families (64.3%) experience a significant but small impact associated with raising a child with feeding difficulties in Aotearoa. However, 36.4% of respondents reported a moderate to significant financial impact. Barriers to working caused by feeding challenges and childcare, as well as non-medical expenses, contributed to financial strain and psychological impacts experienced by respondents. Parents struggled to find support for their own wellbeing.

What aspects of health and wellbeing are most important to parent carers of children with disabilities?

INTRODUCTION: Parent carers of children with special educational needs or disabilities are at risk of poorer health and wellbeing outcomes because of the distinct and challenging circumstances they face. Evaluations of interventions promoting the health of parent carers should focus on measuring the aspects of health and wellbeing which are most relevant to this group. As part of a programme of research on parent carer-focused interventions, this study aimed to understand which aspects of health and wellbeing are perceived by parent carers as most meaningful and important. METHODS: A qualitative study using semistructured online interviews was conducted. A purposive sample of parent carers was interviewed about relevant health and wellbeing outcomes. Transcripts were analysed thematically. RESULTS: Thirty parent carers were interviewed, 19 of whom had experienced a health-promoting intervention, either as participants (n = 14) or facilitators (n = 5). Three main themes were identified: 'self, identity and beliefs'; 'social connections and support' and 'health-promoting practices and outcomes.' Each theme encompassed the challenges participants faced, and the changes that helped them overcome these challenges. 'Self-identity' challenges focused on the overwhelming nature of the parental care role and the emotional impact of this. Changes were brought about by developing a positive mindset, increasing confidence, and reconnecting with aspects of their identity which were important to them before they became parent carers. Challenges related to 'social connections' reflected parent carers' isolation. Change was brought about through increased peer support and peer interactions. Parent carers experienced challenges in terms of 'health-promoting activities' because they lacked free time and experienced poor physical health. Changes were brought about by engagement in health-promoting activities of various kinds. CONCLUSION: Parent carers view health and wellbeing in terms of overcoming the common challenges they face as a group. These challenges reflect the ways in which their physiological and psychological needs are often unmet. Researchers interested in measuring parent carer health and wellbeing should consider the specific challenges this group face, as well as theoretical frameworks which can make sense of these challenges, such as self-determination theory. PATIENT OR PUBLIC CONTRIBUTION: Our team carries out patient and public involvement (PPI) through a Family Faculty group facilitated by a Family Involvement Co-ordinator (A. McD.) who is herself a parent carer. A study-specific PPI working group was established which included members of the Family Faculty. The PPI group advised on various aspects of the research as reported in the paper. The manuscript was co-authored by the team's Family Involvement Co-ordinator (A. McD.).

Development and validation of the Vaccine Barriers Assessment Tool for identifying drivers of under-vaccination in children under five years in Australia.

Data on routine childhood vaccination coverage can only tell us who is under-vaccinated; it cannot explain why vaccine coverage is low. Collecting data on the reasons behind under-vaccination is necessary to implement cost-effective strategies that address key barriers and target interventions appropriately. However, no instruments that measure both vaccine acceptance and access factors among parents of children <5 y have been validated in high-income countries. This study aims to develop and validate the Vaccine Barriers Assessment Tool (VBAT) for Australia. We applied three phases of mixed methods data collection and analysis. In Phase 1, we developed a comprehensive list of 80 items reflecting all potential parental barriers to childhood vaccination, derived from published literature and behavioral theory. Through cognitive interviews (n = 28), we refined this list to 45 items. In Phase 2, we conducted a two-wave online survey to test the reliability and validity of these items in an Australian sample of parents (n = 532) with structural equation modeling, further refining the list to 35 items. In Phase 3, we conducted a final parent survey (n = 156), administering these items along with the Parent Attitudes toward Childhood Vaccination (PACV) scale for comparison. We reviewed participants' immunization register data to assess the predictive validity of the proposed models. The final 6-item short form and 15-item long form Vaccine Barriers Assessment Tool assess access, communal benefit, personal risk, equity, commitment, social norms, and trust in health-care workers. It is being applied for national surveillance in Australia and will be adapted for additional populations and vaccines.