Parents Of Survivors Research Articles

Quality of life of Retinoblastoma survivors in tertiary care eye hospital in South India.

With the increased survival of retinoblastoma (RB) patients, it is important to evaluate the quality of life (QoL) of RB survivors as well as caregivers to provide comprehensive care to the children and caregivers. This study aims to assess the QoL of survivors of RB, as perceived by parents and the self-report by patients, through a pediatric QoL (PEDs-QoL) questionnaire. The study cohort included 86 RB survivors, 86 age-matched controls, and their primary carers. PedsQL 4.0 generic core scale and structured interview were administered. QoL in physical, social, emotional, and school health was evaluated and correlated with clinical and sociodemographic parameters. The mean age of the RB survivors was 5.7 years with an M:F ratio of 1.1:1. Disease was bilateral in 79% of cases. About 45% (39/86) underwent enucleation, while others received combination therapy (16; 18%), chemotherapy (30; 34%), and radiation (1; 1%). As reported by parents, the QoL of physical health domain of RB survivors was 70.2 SD ± 27.8 and 96.15 ± 13 SD, emotional health was 72.1 ± 27.4 SD and 94.4 ± 12.5 SD, social health was 80.4 ± 24.9 SD and 98.6 ± 6.2 SD; and school health was 71.9 ± 2 6.5 SD and 96.1 ± 12.2 SD. As per the self-report perception, the QoL of physical health was 68.2 ± 27.8 SD and 96.2 ± 13 SD, emotional health was 66.2 ± 28.4 SD and 95.3 ± 12.5 SD, social health was 69.5 ± 24.9 SD and 98.7 ± 6.2 SD, and school health was 63.5 ± 26.5 SD and 95.1 ± 12.2 SD. There was a significant relationship between enucleation and QoL domains, where χ2 = 67.75, degrees of freedom (df) = 36, and P < 0.01. There was a significant association between vision in the better eye (6/18 or better = 8, 6/18-6/60 = 8, 3/60 or worse = 42) and QoL scores (χ2 = 95.36, df = 62, P < 0.01). There was a substantial association between socioeconomic status and QoL domains, where χ2= 88.5, df = 56, P < 0.01. The results of the study showed that the QoL of parents of RB survivors and self-proxy reports were negatively affected in many ways, including physical, social, emotional, and school-related dimensions. Despite the small differences, self-proxy reports indicated a lower QoL than the parents' group. The study findings indicate that there are notable correlations between enucleation and visual acuity less than 6/18, as well as socioeconomic status, with various aspects of QoL domains among individuals who have survived RB.

Health professionals’ presence and attributes in connecting with parents of children with cancer: A qualitative study through the lens of compassion

PurposeThroughout a child's cancer treatment, health professionals (HPs) constitute an important source of support for the entire family. However, the understanding of their presence and essential attributes is unclear. This study explored HPs' presence and attributes in connecting with parents and identified facilitators and barriers for connectedness. MethodsThis qualitative study was undertaken in a compassion paradigm, designed and guided by Heidegger's and Gadamer's philosophical concepts, and employed compassionate methods. Data were generated through ethnographic fieldwork (144 h), parent interviews (n = 16), and focus group interviews with parents of cancer survivors (n = 2) and HPs (n = 3). Inductive content analysis was utilised to analyse data. ResultsMany HP-parent contacts developed into close, genuine connections based on HPs' great commitment and ability to balance the act of closeness and distance. This involved HPs’ sensitivity, humanity, humility, honest communication, genuine interest, and high clinical competencies; all promoting trust. Adapting and ending close relationships when approaching the end of treatment had little attention and was difficult for families, making some find ways of keeping contact on a personal level. Barriers disclosed were structural work changes, busyness, dishonest, poor, or lack of communication, and poor or lack of interpersonal chemistry. ConclusionHuman interconnectedness is powerful in long-term professional relationships and strengthens the parents. More research and clinical attention are needed to develop the understanding and help target actions toward building, maintaining, and ending relationships. Further, cultivating being present in the moment, through mindfulness and compassion, may support HPs in maintaining a receptive mind and a caring role.

Perceived vulnerability related to health in cancer post-treated adolescent in Iran: a content analysis

BackgroundThe prevalence of cancer is increasing, which significantly impacts the health and various aspects of the lives of cancer-post-treated adolescents. Adolescents with cancer have many negative consequences, including increased vulnerability. Therefore, this study aimed to explore the perceived vulnerability of cancer-post-treated adolescents using a deep examination of experiences and perceptions of participants.MethodsThis study was conducted on 18 participants, who were selected based on purposive sampling in 2023 using a qualitative method through a content analysis approach in Iran. A face-to-face and semi-structured individual interview was used to collect data. Inclusion criteria were children aged 11–19 years, with no history of diseases except cancer, at least one year passed since their last treatment and were aware of their disease. Inclusion criteria for other participants were Parents of childhood cancer survivors whose child is under 19 years old. Health care providers that had at least one year of experience working with and caring for pediatric cancer survivors. The research objective, participation principle, and interview recording were explained to the participants before the interview started. The criteria of credibility, dependability, confirmability and transferability were included to support the trustworthiness of data. The data was analyzed using the conventional qualitative content analysis method and MAXQDA10 software was used for data management.ResultsThe participants included 12 cancer-post-treated adolescents, two parents, two nurses, one doctor, and one cancer charity representative. The data analysis identified three categories: “Confusion in early adolescence”, “Psychological turmoil of disease”, and “Physical burden of the disease”. Finally, the latent content was formulated in to a “Perceived vulnerability” overarching theme.ConclusionIdentifying the patient’s perceptions and beliefs is one of the current health problems to improve the quality of life and facilitate the optimal transition from adolescence to adulthood and adult care. Health professionals have an opportunity to address factors that increase survivors’ sense of vulnerability to health problems by correcting knowledge gaps.

Addressing gaps and enhancing experiences in support services for families of pediatric cancer survivors.

Childhood cancer's enduring challenges extend beyond primary therapy. Diverse medical and psychosocial services are available to assist families in follow-up care. This interview study sought to gain a thorough understanding of family motives, satisfaction levels, and barriers to utilization. The design of this cross-sectional study involves a qualitative content analysis of semi-structured interviews. We interviewed parents of minor cancer survivors within the first 5 years after primary treatment. Survivors readily accessed medical support services when necessary. While parents expressed overall satisfaction with the available services, there was a notable gap in their knowledge regarding appropriate psychosocial and family-orientated services. Barriers to access included geographical distances, time constraints, and the absence of childcare options. There are familial challenges and burdens that fall outside the scope of conventional care services. Tailoring services to family-centered needs, providing more information and easier access to interventions might help to reduce barriers. Existing need notwithstanding, families did not frequently utilize psychosocial services as they did medical ones. Identified barriers included lack of awareness, limited availability, long distances, and scheduling conflicts. While many studies primarily focus on adult patients or young adults, the present study examines the gaps and strengths in follow-up care for pediatric cancer survivors and their families. By acknowledging and addressing the unique challenges and strengths of families with pediatric cancer survivors, we can lead to a more tailored and effective follow-up approach that can enhance their overall well-being by minimizing barriers and providing targeted support.

Challenges Faced by Parents of Pediatric Burn Survivors: A Thematic Analysis

Background: Burn injuries compromise the integrity of skin, its appendages, and underlying tissues due to exposure to various agents including dry and moist heat, corrosive substances, and high voltage electric currents. Particularly in the pediatric population, these injuries not only affect the children but also significantly impact the lives and health of their parents. Objective: This study aimed to explore the multifaceted challenges faced by parents of pediatric burn survivors at the Burn and Plastic Surgery Center in Hayatabad KPK Peshawar. Methods: Employing a qualitative case study design, this research involved 10 participants selected via purposive sampling. Data collection was conducted through face-to-face in-depth interviews using a semi-structured interview guide. All interviews were audio-recorded, with non-verbal cues and expressions meticulously documented. Thematic analysis was utilized to derive codes, categories, and subsequently, themes from the data. Results: Analysis revealed five major themes reflecting the challenges encountered by parents: socio-economic difficulties, psychological distress, physiological and physical health issues, spiritual anxiety with altered religious activities, and domestic violence and abuse. Specifically, 70% of participants experienced significant disruptions in their daily lives and interactions, while 100% reported financial hardships directly affecting their ability to manage the health care needs of their children. Conclusion: The study underscores the extensive challenges that parents of pediatric burn survivors face, highlighting the necessity for healthcare professionals to adopt a holistic approach in treating burnt children while concurrently addressing parental difficulties. Effective identification and management of these challenges are crucial to improving health outcomes for both the children and their parents.

'My child could have died': counterfactual thoughts and psychological distress in parents of trauma survivors.

Background: After exposure to a potentially traumatic event, survivors may experience thoughts about 'what could have happened', referred to as counterfactual thoughts (CFTs). CFTs have been found to have a negative impact on survivors' mental health. This is the first study to investigate whether parents of trauma survivors experience CFTs and the association with psychological distress in this group.Objective: The main aim of the present study is to investigate CFTs in parents of trauma survivors and the relationship between the frequency and vividness of CFTs and psychological distress.Method: The participants (N = 310, 191 females) were parents of the youths targeted in the terror attack on Utøya island, Norway, in 2011. Frequency and vividness of CFTs, posttraumatic stress reactions (PTSR), and symptoms of anxiety and depression were measured 8.5-9 years post-terror.Results: The majority of the parents (74%) reported having experienced CFTs at some time point since the attack. For almost one-third of the parents, CFTs were still present more than eight years after the attack. Higher frequency and vividness of CFTs were uniquely associated with higher levels of PTSR, anxiety, and depression.Conclusion: The present findings suggest that frequent and vivid CFTs may contribute to mental health problems in parents of trauma survivors and should be addressed in therapy.

Children of trauma survivors: Influences of parental posttraumatic stress and child-perceived parenting

BackgroundResearch has established a negative association between parental posttraumatic stress symptoms (PTSS), including subthreshold symptoms, and child physical and behavioral health outcomes. Such intergenerational transmission of risk has multiple possible mechanisms, including lack of positive parenting, increased negative parenting, shared environmental and contextual risks, and potential biological components such as shared genetics or even transmission of epigenetic risk. MethodThis study examined 93 parent-child dyads (n = 171 participants total) from a mixed Urban-Suburban US metropolitan area to investigate the relations between parental PTSS and child-perceived parenting and child PTSS. We sought to examine interactions between parental PTSS and parenting on child PTSS. ResultsWe found an association between parent and child PTSS, consistent with prior literature showing increased risk for children of trauma survivors. Interestingly, we found effects of positive parenting on diminished child PTSS symptoms only in parents without PTSS, whereas the effect of positive parenting on buffering child symptoms was absent in parents with PTSS.Limitations.The present findings are tempered by the use of self-report data to assess parent and child PTSS, which is not as reliable as clinician assessment of symptoms. Further, the use of survey data limits what is known about the extent of trauma exposure in parents and children, and different measures were used to assess PTSS in parents and kids, which limits comparability of these reported symptoms. DiscussionLimitations notwithstanding, findings suggest joint attention paid to parenting practices and to a parent's recovery, even from subthreshold symptoms of PTSS, as two different but important ways to support trauma survivor parents in their efforts to most optimally parent and protect their children from intergenerational risk.

Health care needs, experiences, and satisfaction after terrorism: a longitudinal study of parents of survivors of the Utøya attack

BackgroundThere is scarce knowledge on the health care follow-up of parents of terror attack survivors. This study focused on the mothers and fathers of survivors and examined (1) their perceived health care needs relative to their psychological reactions, physical health problems (unmet health care needs), and adaptation to work; (2) whether sociodemographic characteristics, health problems and social support were associated with unmet health care needs; and (3) how unmet health care needs, sociodemographic characteristics, and experiences with health services associated with overall dissatisfaction during the health care follow-up.MethodsInterview and questionnaire data from three waves of the Utøya parent study were analyzed (n = 364). Chi-square tests and t- tests were used to compare unmet physical and psychological health care needs, sociodemographic factors and post-terror attack health reported by mothers and fathers. Logistic regression analyses were used to examine whether sociodemographic characteristics, unmet health care needs, and health care experiences were associated with overall dissatisfaction among mothers and fathers of the survivors during the health care follow-up.ResultsAmong the mothers, 43% reported unmet health care needs for psychological reactions, while 25% reported unmet health care needs for physical problems. Among the fathers, 36% reported unmet health care needs for psychological reactions, and 15% reported unmet health care needs for physical problems. Approximately 1 in 5 mothers and 1 in 10 fathers reported “very high/high” needs for adaptation to work. Poorer self-perceived health, higher levels of posttraumatic stress and anxiety/depression symptoms, and lower levels of social support were significantly associated with reported unmet psychological and physical health care needs in both mothers and fathers. Parents with unmet health care needs reported significantly lower satisfaction with the help services received compared to parents whose health care needs were met. Low accessibility of help services and not having enough time to talk and interact with health care practitioners were associated with overall dissatisfaction with the help received.ConclusionsOur findings highlight that parents of terror-exposed adolescents are at risk of having unmet psychological and physical health care needs and thus need to be included in proactive outreach and health care follow-up programs in the aftermath of a terror attack.

Qualitative Analysis of School Re-Entry Experiences of Turkish Survivors of Childhood and Adolescent Cancer: Parental Perspective

This study aimed to explore the school re-entry experiences of Turkish survivors of childhood and adolescent cancer. In this qualitative study, semistructured in-depth interviews were undertaken with parents of childhood cancer survivors who had completed treatment for at least 2 years (n = 20). Interviews were conducted via telephone or video conferencing. The study was conducted and reported according to the COREQ (Consolidated Criteria for Reporting Qualitative Research) guidelines. The components of qualitative rigor were considered to ensure confidence in the methods and data. The average age of parents was 43.20 ± 4.66 years (range 37-55) (n = 20). The mean age of survivors was 8.45 ± 2.03 years at diagnosis and 15.05 ± 2.08 years during the study. The diagnosis of most of the survivors was lymphoma (35%). Four main themes were developed: worry; challenging situations; negative effects of the disease process; and facilitating situations. Parents stated that both children and parents need support during the school re-entry process. This study revealed that survivors may experience problems that make school re-entry difficult. With cooperation between the health team and the school, arrangements should be made to ensure survivors have a positive experience on school re-entry. Pediatric oncology nurses should know survivors' requirements and take action to deliver school re-entry adjustment programs.

The body as a canvas: Memory, tattoos and the Holocaust

This article explores the decision amongst the children and grandchildren of Auschwitz survivors to replicate the concentration camp number of their survivor family member on their own body. The article sheds new light on the complex intergenerational legacy of the Holocaust and on memorial practices. By focusing on the tattoo as a form of memorial practice, the article captures the intersections between the contemporary trend of tattooing and the concentration camp number as the visual symbol of the crimes of the Nazis. Drawing on data from qualitative interviews with 13 descendants of Holocaust survivors, the article considers motivations for getting the tattoo, conversations with the survivor parent or grandparent about the tattoo (if they were still alive), as well as the design and placement on the body. The decision to replicate the number was a statement about family relationships and was often a way of expressing love, legacy and continuity and pride. Some descendants who replicated the number, which had dehumanised and stigmatised their ancestor, saw it as a way of reclaiming. The tattoo also had a dialogical function, keeping family stories and histories alive as we enter the post-witness era. The sociological analysis is this article shows how personal lives are shaped by memories, as well as secrets and silences, and how they connect with history, relationships and identity. This article contributes to our understanding of the legacy of the Holocaust on families and family relationships and the corporeal impacts across generations.

"Times of war and time of uncertain peace": Narratives of parents of childhood cancer survivors.

to analyze the meaning attributed by parents to the extended and permanent survival of childhood cancer. qualitative narrative inquiry, developed with parents of adolescents and young adults who survived childhood cancer. Recruitment and data collection involved virtual and in-person approaches. The data were collected through semi-structured interviews. Data were analyzed according to reflective thematic analysis. a total of ten parents were included in the study. Two thematic narrative syntheses were constructed: "Times of war"; and "Time of uncertain peace", with their respective sub-themes. The cancer diagnosis marks the beginning of times of war in the parents' lives. They experience cancer treatment as "highs and lows" with potential threats to their children's lives. After that, "Time of uncertain peace" are reached, and the balance of the family unit is reestablished. However, the fear of recurrence makes the family peace uncertain, and its maintenance requires constant vigilance and attention to the signs and symptoms of a possible new battle. the results highlight the experience of being a parent of a childhood cancer survivor and can be applied to develop models of care centered on the survivors' family.

Parent-Reported Health-Related Quality of Life Outcomes and Impact on Family of Congenital Diaphragmatic Hernia Survivors After Repair: A Cross-Sectional Comparison to Healthy Controls

BackgroundCongenital diaphragmatic hernia (CDH) survivors often experience long-term CDH-associated morbidities, including musculoskeletal, gastrointestinal and respiratory issues. This study evaluates parent-reported health-related quality of life (HRQOL) and family impact of the disease. MethodsElectronic medical records (EMR) were reviewed and phone surveys performed with parents of CDH survivors who underwent repair at our institution from 2010 to 2019. They completed the following Pediatric Quality of Life Inventory™ (PedsQL™) questionnaires: Generic Core Scales 4.0 (parent-proxy report) and Family Impact (FI) Module 2.0. Age-matched and gender-matched healthy controls from an existing database were used for comparison. Subgroup analysis of CDH patients alone was also performed. Appropriate statistical analysis was used with p < 0.05 significance. Data are reported as median (range). Ethical approval was obtained. ResultsOf 76 CDH survivors, 45 parents (59 %) consented for study participation. Patients and controls were aged 6 (3–12) years; 51 % were male. In Core Scales, there were significant differences between the groups in the overall scores (p = 0.003) and the psychosocial health sub-scores (p = 0.004), but no difference in the physical health domain scores. In the Family Impact Module, there were no significant differences between the groups in overall scores, in parent HRQOL and in family functioning sub-scores. However, CDH patients with learning disabilities had significantly worse Family Impact Module overall scores compared to CDH patients without learning disabilities (p = 0.04). ConclusionThe overall HRQOL in children with CDH survivors is worse compared to controls, but impact on family appears similar. We highlight the need for long-term follow-up of CDH patients, especially those with learning disabilities. Healthcare providers should formulate tailored care plans to address patient and caregiver needs. Type of studyProspective Study. Level of evidenceLevel III.

Post-traumatic growth in parents of long-term childhood cancer survivors compared to the general population: Areport from the Swiss childhood cancer survivor study-Parents.

Post-traumatic growth (PTG) describes perceived positive changes following a traumatic event. We describe (i) PTG in parents of long-term childhood cancer survivors (CCS-parents) compared to parents of similar-aged children of the general population (comparison-parents), (ii) normative data for the Swiss population, and (iii) psychological, socio-economic, and event-related characteristics associated with PTG. CCS-parents (aged ≤16years at diagnosis, ≥20years old at study, registered in the Childhood Cancer Registry Switzerland (ChCR), and the Swiss population responded to a paper-based survey, including the PTG-Inventory (total score 0-105). We carried out (i) t-tests, (ii) descriptive statistics, and (iii) multilevel regression models with survivor/household as the cluster variable. In total, 746 CCS-parents (41.7% fathers, response-rate=42.3%) of 494 survivors (median time since diagnosis 24 (7-40) years), 411 comparison-parents (42.8% fathers, 312 households), and 1069 individuals of the Swiss population (40.7% male, response-rate=20.1%) participated. Mean [M] total PTG was in CCS-parents M=52.3 versus comparison-parents M=50.4, p=0.078; and in the Swiss population M=44.5). CCS-parents showed higher 'relating-to-others' (18.4 vs. 17.3, p=0.010), 'spiritual-change' (3.3 vs. 3.0, p=0.038) and 'appreciation-of-life' (9.3 vs. 8.4, p=0.027) than comparison-parents, but not in 'new-possibilities' and 'personal-strength'. Female gender, older age, higher post-traumatic stress, and higher resilience were positively associated with PTG. Individuals reporting events not typically classified as traumatic also reported growth. Our findings highlight that mothers and fathers can experience heightened growth many years after their child's illness. Being able to sensitively foreshadow the potential for new-possibilities and personal development may help support parents in developing a sense of hope.

Firearm Injuries In Children And Adolescents: Health And Economic Consequences Among Survivors And Family Members.

More US children and adolescents today die from firearms than any other cause, and many more sustain firearm injuries and survive. The clinical and economic impact of these firearm injuries on survivors and family members remains poorly understood. Using 2007-21 commercial health insurance claims data, we studied 2,052 child and adolescent survivors compared to 9,983 matched controls who did not incur firearm injuries, along with 6,209 family members of survivors compared to 29,877 matched controls, and 265 family members of decedents compared to 1,263 matched controls. Through one year after firearm injury, child and adolescent survivors experienced a 117percent increase in pain disorders, a 68percent increase in psychiatric disorders, and a 144percent increase in substance use disorders relative to the controls. Survivors' health care spending increased by an average of $34,884-a 17.1-fold increase-with 95percent paid by insurers or employers. Parents of survivors experienced a 30-31percent increase in psychiatric disorders, with 75percent more mental health visits by mothers, and 5-14percent reductions in mothers' and siblings' routine medical care. Family members of decedents experienced substantially larger 2.3- to 5.3-fold increases in psychiatric disorders, with at least 15.3-fold more mental health visits among parents. Firearm injuries in youth have notable health implications for the whole family, along with large effects on societal spending.

The police paradox: A qualitative study of post-overdose outreach program implementation through public health-public safety partnerships in Massachusetts.

Post-overdose outreach has emerged in the United States as an increasingly common response to non-fatal overdose. This qualitative study investigates the implementation of such programs through public health-public safety partnerships in Massachusetts. We conducted semi-structured interviews with post-overdose outreach team members, overdose survivors, and family members who received outreach. Interview transcripts were inductively analyzed to identify emergent themes and subsequently organized within the framework of Ecological Systems Theory. Forty-nine interviews were conducted, including 15 police officers (80% male, 100% non-Hispanic White); 23 public health partners (48% male, 87% non-Hispanic White); 8 overdose survivors who received outreach services and 3 parents of survivors who received services (collectively 27% male, 64% non-Hispanic White). Implementation factors identified across all levels (macrosystem, exosystem, mesosystem, and microsystem) of Ecological Systems Theory included key program facilitators, such as access to police data and funding (macro), interagency collaboration (exo), shared recognition of community needs (exo), supportive relationships among team members (meso), and program champions (micro). Common barriers included inherent contradictions between policing and public health mandates (macro), poor local treatment and service capacity (exo), divergent staff views of program goals (exo), overdose survivors' prior negative experiences with law enforcement (meso), difficulty locating overdose survivors (meso), and police officers' lack of qualifications or training in providing psycho-social services (micro). Most post-overdose outreach programs in this study were dependent on funding and data-sharing partnerships, which police agencies largely controlled. Yet, police participation, especially during outreach visits presented numerous challenges for engaging overdose survivors and establishing non-coercive linkages with evidence-based services, which may undermine the public health goals of these programs. These findings should inform state and federal efforts to expand the role of law enforcement in behavioral health initiatives.

Social support experiences of hispanic/latino parents of childhood cancer survivors in a safety-net hospital: a qualitative study

Purpose To describe the social support experiences of Hispanic/Latino parents while caregiving for childhood cancer survivors. Research approach Semi-structured one-on-one interviews were conducted among 15 caregivers from a safety-net hospital in Los Angeles. A thematic analysis approach was used to analyze data. Findings The positive influence of social support throughout their caregiving experience included (1) sharing information-enhanced knowledge, (2) receiving comfort and encouragement, (3) receiving tangible assistance reducing the caregiving burden, and (4) enhancing caregiving empowerment/self-efficacy. Sub-themes regarding the lack of social support included (1) being a single parent and (2) family and friends withdrawing after the child’s cancer diagnosis. Conclusion We found Hispanic/Latino parents strongly value social support as it enables them to have essential resources that support caregiving for their child and themselves. Efforts should ensure that caregivers are routinely screened to identify their supportive needs so that support services for caregivers can be optimized and tailored, as those with a lack of social support may experience excessive caregiver burden.

Impact of COVID-19 on Lifestyle Habits and Emotional State of Childhood Cancer Survivors and Their Parents.

The COVID-19 pandemic and associated social distancing measures affected the physical and emotional state of children and parents worldwide. Survivors of childhood cancer may be particularly vulnerable to these effects. We aimed to evaluate the lifestyle habits and emotional states of childhood cancer survivors and their parents during the COVID-19 outbreak. Lifestyle habits and emotional distress were assessed in 43 childhood cancer survivors (aged 8-21 years) and their parents before and during the COVID-19 lockdown, using the PROMIS anxiety and depression modules and the "Mabat Youth" questionnaire. Most parents (80.5%) reported eating more family meals during home confinement compared to their usual routine. Patients' physical activity levels did not change significantly during confinement, leisure-related screen time nearly doubled (p < 0.001), and sleep duration increased (p = 0.006). Anxiety levels of children (p = 0.045) and parents (p = 0.02) increased during confinement compared to pre-pandemic levels, with no significant changes in depression levels. Contrary to concerns regarding lifestyle habits during the COVID-19 lockdown, eating behaviors of childhood cancer survivors improved, sleep duration increased, and physical activity remained unchanged. Still, screen time increased significantly. Parents of childhood cancer survivors reported higher anxiety levels for themselves and their children during home confinement. Our findings may assist medical and psycho-social teams in guiding parents of cancer survivors during similar circumstances in the future.

Mental health and health behaviors of parents of survivors of childhood cancer in the early COVID-19 pandemic: Exploring the role of intolerance of uncertainty

Abstract Introduction: Parents of survivors of childhood cancer may be particularly vulnerable to the experience of poor mental health amid the COVID-19 pandemic. This study aimed to (1) describe the mental health of parents of childhood cancer survivors; (2) explore the role of intolerance of uncertainty (IU) in mental health; and (3) explore the associations of parent mental health and health behaviors with IU. Methods: A cross-sectional, quantitative assessment of parents of survivors of childhood cancer (younger than 18 years) was conducted between May and June 2020. Participants completed an online questionnaire regarding their mental health (PROMIS anxiety, depression), IU (Intolerance of Uncertainty Scale), and health behaviors. Recruitment was conducted through social media and community organizations using convenience and snowball sampling. Results: Seventy-two participants from 6 countries completed the study (99% mothers, mean age of survivors = 11.4 years). Fifty percent of participants reported that their mental health had declined since the start of the COVID-19 pandemic, whereas 46% reported their mental health did not change. More than half of the participants (56%) reported decreased physical activity and 38% reported increased alcohol use. Exploring associations of parent mental health and health behaviors with IU, parent depression, and hours of exercise emerged as significant predictors (B = 3.62, P &lt; .01; B = –1.58, P &lt; .01, respectively), whereby higher depression and less exercise was associated with higher IU. Conclusions: At the height of the COVID-19 global pandemic, some parents of survivors of childhood cancer experienced poor mental health. IU plays a significant role in mental health outcomes, but this does not translate to health behaviors.

Psychological Impact and Coping Strategies of Hispanic Parents of Children with Cancer: A Qualitative Study.

Throughout the cancer trajectory, parents of childhood cancer survivors (CCSs) may experience mental and social challenges requiring continual adaptation to cancer-induced stress. Using Lazarus and Folkman's Transactional Model of Stress and Coping framework, this qualitative study aimed to describe Hispanic parents' psychological health and explore their coping strategies. Purposive sampling was used to recruit 15 Hispanic caregivers from a safety-net hospital in Los Angeles County. To be eligible, participants had to be: the primary caregiver of a CCS who had completed active treatment, the primary caregiver or child self-identified as Hispanic, and proficient in English or Spanish. The interviews lasted approximately 60 min, were audio-recorded (in English and Spanish), and professionally transcribed. Data were analyzed following a thematic content analysis with deductive and inductive approaches on Dedoose. Participants described high levels of stress and fear when their child was diagnosed with cancer. They also shared experiencing symptoms of social anxiety, post-traumatic stress disorder, and depression. Participants' coping strategies were encompassed by three major themes: problem-focused, emotion-focused, and avoidant coping strategies. Problem-focused coping strategies included self-efficacy, behavioral change, and social support. Emotion-focused coping strategies included religious practices and positive reframing. Avoidant coping strategies included denial and self-distraction. Despite the evident disparities in psychological health for Hispanic parents of CCSs, gaps remain in designing a culturally tailored program to help alleviate the caregiver burden. This study provides insights regarding coping strategies that Hispanic caregivers use to deal with the psychological impact of their child's cancer diagnosis. Our findings also delve into the contextual and cultural factors that impact psychological adjustment.

Neurodevelopmental outcomes of neonatal posthemorrhagic hydrocephalus and psychological effects on the parents

BackgroundNeonatal posthemorrhagic hydrocephalus remains a common complication in preterm infants, with high rates of mortality and morbidity, placing parents at high risk of anxiety and depression. We sought to investigate the neurodevelopmental outcomes of infants with posthemorrhagic hydrocephalus who underwent surgery and the psychological effect on their parents.MethodsWe retrospectively analysed all infants with posthemorrhagic hydrocephalus born between 2014 and 2020 in the Children’s Hospital of Chongqing Medical University, China. The neurodevelopmental outcomes of 28 patients were evaluated by the Pediatric Stroke Outcome Measure score, and the psychological states of the parents of survivors were assessed by the Hospital Anxiety and Depression Scale.ResultsThe families of the 28 patients were followed up for a median duration of 3 years; 6 (21.4%) patients died within 6 months after discharge, 12 (42.9%) patients had moderate to severe dysfunction, and only 10 (35.7%) patients had good outcomes. Regarding the 22 parents of the survivors, 5 (22.7%) and 4 (18.2%) had borderline anxiety and depression symptoms, respectively. Two (9.1%) caregivers had exact anxiety and depression symptoms. Leukomalacia after intraventricular haemorrhage was associated with adverse neurological outcomes. The infants' histories of epileptic seizures during the neonatal period were associated with the anxiety of their parents.ConclusionThe overall outcome of posthemorrhagic hydrocephalus patients is unsatisfactory, and children with leukomalacia after haemorrhage tend to have poor outcomes. A history of epileptic seizures during the course of the disease may exacerbate the anxiety of the caregivers.