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1.
Semina cienc. biol. saude ; 45(2): 211-222, jul./dez. 2024. tab
Artigo em Português | LILACS | ID: biblio-1554836

RESUMO

As queimaduras provocam efeitos físicos e psicológicos devastadores nos indivíduos, sobretudo em crianças e adolescentes, e podem modificar a qualidade de vida da pessoa. O objetivo foi analisar o impacto das cicatrizes por queimaduras em crianças menores de oito anos na interação com amigos, família e escola, na perspectiva dos pais. Estudo quantitativo de corte transversal realizado com os pais de crianças <8 anos de idade, vítimas de queimaduras e internadas em um Centro de Tratamento de Queimados no norte do Paraná e acompanhadas ambulatorialmente, de 2017 a 2020. A coleta de dados ocorreu por meio de dois instrumentos: caracterização sociodemográfica e clínica; e Brisbane Burn Scar Impact Profile. Realizou-se análise descritiva e teste Qui-quadrado utilizando-se o SPSS®. Participaram 34 pais cujas crianças sofreram queimaduras, sendo 52,9% de 1 a 3 anos de idade, 58,8% sexo masculino, 82,2% por agente etiológico térmico e a internação foi de 73,5% devido à Superfície Corpórea Queimada ≤20%. Após a alta os pais identificaram que as cicatrizes de queimaduras tinham "um pouco" e "pouco" impacto nas cicatrizes nas relações de amizade e na interação social. Para os pais, prevaleceu a resposta "nada" de impacto, seguido por "um pouco" e "muito" na escola, nas brincadeiras, nos jogos e nas atividades diárias. Quanto às reações emocionais e ao humor, a maior parte dos pais considerou "nada". Nesse sentido, os pais responderam às questões quanto à própria percepção sobre as atividades diárias do seu filho e, em geral, a cicatriz de queimadura não impactou na qualidade de vida da criança.


Burns cause devastating physical and psychological effects on individuals, especially children and adolescents, and can change a person's quality of life. The objective was to analyze the impact of burn scars in children under eight years of age in the interaction with friends, family and school, from the parents' perspective. Quantitative cross-sectional study carried out with the parents of children <8 years old who were victims of burns and admitted to a Burn Treatment Center in northern Paraná and monitored on an outpatient basis, from 2017 to 2020. Data collection occurred using two instruments: sociodemographic and clinical characterization; Brisbane Burn Scar Impact Profile. Descriptive analysis and Chi-square test were performed using SPSS®. 34 parents participated whose children suffered burns, 52.9% aged 1 to 3 years old, 58.8% male, 82.2% due to thermal etiological agent and 73.5% hospitalization was due to Burned Body Surface ≤ 20%. After discharge, the parents identified that the burn scars had "a little" and "little" impact on the scars in friendship relationships and social interaction. For parents, the answer "nothing" of impact prevailed, followed by "a little" and "a lot" in school, play, games and daily activities. As for emotional reactions and mood, most parents considered "nothing" that impacted the child with burn scars. In this sense, parents answered questions regarding their own perception of their child's daily activities and, in general, the burn scar did not impact the child's quality of life.


Assuntos
Humanos , Masculino , Feminino , Lactente , Pré-Escolar
2.
Artigo em Inglês | MEDLINE | ID: mdl-39217592

RESUMO

Parenting a child on the autism spectrum presents particular challenges that can lead to increased stress, anxiety, and depression among family members. Therefore, we aimed to investigate the prevalence of mental disorders in first-degree relatives of individuals on the autism spectrum. This article adheres to the Preferred Reporting Items for Systematic Review and Meta-Analyses Protocols (PRISMA-P) guidelines, including studies indexed in PubMed/Medline, Embase, PsycINFO, Biblioteca Virtual em Saúde (BVS), and SciELO. Nineteen articles met eligibility criteria for the systematic review. Using a random-effects model (N = 93,876), we found a pooled prevalence of affective disorders of 13% in mothers of people on the autism spectrum (95% CI 7-21%; I2 = 99%, p < 0.01). Additionally, another random-effects model pointed out that first-degree relatives of people on the autism spectrum (N = 93,263) were more likely to present affective disorders than relatives of people with neurotypical development (N = 152,455) (pooled OR: 2.17; 95% CI 1.81-2.61). Careful assessment for mental disorders in parents and siblings of individuals on the autism spectrum is crucial to ensure appropriate treatment for these family members. This approach can also contribute to optimizing care for the individuals on the autism spectrum.

3.
Int J Eat Disord ; 2024 Sep 02.
Artigo em Inglês | MEDLINE | ID: mdl-39219404

RESUMO

OBJECTIVE: In cross-sectional and retrospective research, parental binge eating is associated with their children's eating psychopathology. The current study extended the evidence by cross-sectionally and longitudinally examining the relation between parental binge eating and binge eating and weight-control behaviors in the next generation of their adolescent children and young adult children in a population-based sample. METHODS: Adolescents (Time 1: M = 14.5, SD = 2.0 years) (n = 2367), followed into adulthood (Time 2: M = 22.1, SD = 2.0 years), and their parents (n = 3664) were enrolled in EAT 2010-2018 and Project F-EAT 2010. The current study examined parental binge eating, and child binge eating and weight-control behaviors. Adjusted models covaried for child gender, age, and race/ethnicity. RESULTS: Approximately 7% of adolescents at Time 1 had at least one parent who reported binge eating with no differences by child's age, gender, or race/ethnicity. Having at least one parent experiencing binge eating at Time 1 (vs. not) was associated cross-sectionally with adolescent children's use of extreme weight-control behaviors (9.6% vs. 4.8%; Risk Difference [RD] = 4.9%) and associated longitudinally with binge eating during young adulthood (21.1% vs. 11.6%; RD = 9.5%). Other associations did not reach statistical significance. CONCLUSIONS: Children of parents with binge eating appear to have elevated risk of extreme weight-control behaviors during adolescence and binge eating in young adulthood. Clinicians should assess whether eating psychopathology extends to other family members, and offer additional support to parents with binge eating. Further research is needed to identify risk factors in the children of parents with binge eating and to assess strategies for prevention.

4.
J Atten Disord ; : 10870547241273161, 2024 Sep 02.
Artigo em Inglês | MEDLINE | ID: mdl-39219408

RESUMO

OBJECTIVE: ADHD is subject to stigma from the general population. Exposure to stigma poses the risk of developing self-stigma of youth and parents, but few studies have focused on self-stigma of ADHD. Furthermore, parental factors have been implicated in self-stigma of youth, but no previous research has assessed the association between self-stigma of parents and youth. Therefore, the objective of this study was to better understand the experience of self-stigma of youth and their parents in the context of ADHD. METHOD: Fifty-five youth with ADHD (aged 8-17) and one parent reporter per youth completed surveys to report their experiences. RESULTS: The results of this study found that both youth and parents reported significantly lower self-stigma scores compared to most previously published research. Parents of boys reported higher self-stigma scores compared to parents of girls. Youth who reported higher self-stigma also reported lower self-esteem. Self-stigma scores in youth were predicted by inattentive symptoms but not hyperactive/impulsive symptoms or parental self-stigma. CONCLUSION: Results emphasize the importance of understanding self-stigma of ADHD, symptom severity, and the need for interventions for families with ADHD.

5.
Scand J Caring Sci ; 2024 Sep 02.
Artigo em Inglês | MEDLINE | ID: mdl-39221616

RESUMO

BACKGROUND: Suicide is the fourth most common cause of death for the 15-29 age group. Research on the impact of suicide on parents is scarce and, therefore, poorly understood. AIM: To explore parents' experiences who have lost a son or a daughter due to suicide and their experience of the services available to them. METHODS: This phenomenological study involved 1-2 interviews with ten parents aged 40-65, seven mothers and three fathers in all 13 interviews. The age range of their sons and daughters was 17-37 years when they died. RESULTS: For the parents, losing a son or a daughter to suicide is an overwhelming life experience characterised by Excruciating existential suffering and complicated grief where they are confronted with deep meaning-making and existential questions without answers since the person who can answer most of them is no longer alive. They, therefore, felt stuck in their grief for up to 4 years. The initial experience was an immense paralysing shock and sense of unreality. The subsequent period was a blur, and they were numb. Then, their psyche and bodies collapsed, and for a long time, they felt no grief processing was taking place. They sorely needed long-term professional trauma-informed support and felt that, in too many cases, they had to reach out for help themselves. They would have liked to see the healthcare system embrace them with more open arms, offer help and be met with information and individualised support. CONCLUSIONS: Standard operating procedures must be installed to support suicide-bereaved parents better. Long-term professional support and trauma-focused care are required following such major trauma, and providing such support could help to reduce their adverse health impacts. Nurses and other health professionals must be better educated on existential suffering in this context.

6.
Anthropol Med ; : 1-16, 2024 Sep 02.
Artigo em Inglês | MEDLINE | ID: mdl-39221617

RESUMO

This paper traces how the meaning of symptoms and the positioning of selves are entangled and discursively constructed in therapeutic conversations between parents and therapists at a pain clinic for children and young people (age 8 to 18) with recurrent or chronic pain or other somatic symptoms with no established biophysical pathology. Based on data material from an ethnographic fieldwork it is examined how the selves of respectively children/young people and their parents are discursively positioned in conversational encounters and the role positioning of selves play in the context of establishing and negotiating the symptoms' meaning. The bearer of medically unexplained symptoms is oftentimes subjected to moral assessments. In this paper it will be shown that parents, in the institutional setting of the pain clinic, enter the negotiation of moral assessments assigned to their children, and that these moral assessments not only concern the sufferers' selves but also the selves of the parents. The overall argument is that dialogues between parents and therapists concerning the meaning and source of their children's symptoms are simultaneously negotiations in which not only the sufferers' but also their parents' moral positions are at stake.

7.
Ann Acad Med Singap ; 53(8): 490-501, 2024 Aug 19.
Artigo em Inglês | MEDLINE | ID: mdl-39230317

RESUMO

Introduction: The aims of this systematic review and meta-analysis are to synthesise quality of life (QOL) of family caregivers of children and young adults with Down syndrome (DS) and determine factors affecting their QOL. Method: This review was conducted as per Preferred Reporting Items for Systematic Reviews and Meta-Analyses guideline. Key search terms were "quality of life", "down syndrome" and "trisomy 21". Meta-analysis using random effect model was conducted where feasible. All studies underwent qualitative synthesis. The study protocol was registered with PROSPERO (CRD42023413532). Results: Eighteen studies with 1956 caregivers were included. Of the 10 studies utilising the World Health Organization Quality of Life Instrument-Brief Version, 5 were included in the meta-analysis. Psychosocial domain had the highest score with mean (95% confidence interval [CI]) of 63.18 (39.10-87.25). Scores were poorer in physical, environmental and social domains: 59.36 (28.24-90.48), 59.82 (19.57-100.07) and 59.83 (44.24-75.41), respectively. Studies were heterogenous with I2 values ranging from 99-100% (P<0.01). The remaining 8 studies used 6 other instruments. Qualitative synthesis revealed that caregivers' QOL was adversely affected by child-related factors, such as level of functional independence, developmental delay, presence of multiple comorbidities, impaired activities of daily living and poor sleep quality. Environmental factors that adversely affected caregivers' QOL included number of children, housing and support from the family. Personal factors that affected caregivers' QOL included age, being a single mother, low education and low income. Conclusion: QOL of caregivers of children with DS was lower than population reference data. Understand-ing the factors that influence family caregivers' QOL is an essential step towards improving the QOL of caregivers and their children with DS.


Assuntos
Cuidadores , Síndrome de Down , Qualidade de Vida , Humanos , Síndrome de Down/psicologia , Cuidadores/psicologia , Criança , Adulto Jovem , Adolescente , Adulto
8.
Ann Acad Med Singap ; 53(8): 502-513, 2024 Aug 14.
Artigo em Inglês | MEDLINE | ID: mdl-39230318

RESUMO

Introduction: Down syndrome (DS) negatively impacts the well-being of affected individuals. This study aimed to summarise the evidence on quality of life (QOL) of children and young adults with DS using quantitative measures from caregivers' perspective and identify factors that affected their QOL. Method: Database search was conducted on PubMed, Embase, Web of Science and CINAHL on 24 April 2024. Meta-analysis using random effects model was conducted where feasible. All studies underwent qualitative synthesis. The study protocol was registered with PROSPERO (CRD42023413532). Results: Seventeen studies involving 3038 children with DS using various QOL measures were included: Pediatric Quality of Life Inventory (PedsQL) (8 studies), KIDSCREEN (4 studies), KidsLife (2 studies), The Netherlands Organization for Applied Scientific Research Academic Medical Center Children's QOL (2 studies) and Personal Outcome Scale (1 study). Meta-analysis on PedsQL studies compared scores between children with DS and typically developing (TD) children. Total scale score was lower in children with DS (mean 70.28, 95% confidence interval [CI] 64.31-76.24) compared to TD children (mean 88.17, 95% CI 80.50-95.83). All subdomains of PedsQL were also lower in children with DS. Within the domain of psychosocial health, children with DS had statistically significant lower social functioning (standardised mean difference -1.40, 95% CI -2.27 to -0.53) and school functioning (standardised mean difference -1.09, 95% CI -1.55 to -0.62) scores, but similar emotional functioning scores. Qualitative synthesis revealed poorer subdomain QOL compared to TD children, especially in social functioning and cognitive functioning. QOL worsened during adolescent years. Family variables (parental education and occupation) did not affect parental perception of children's QOL. Children with DS who had higher intelligent quotient had better QOL. Conclusion: Children with DS have lower caregiver-reported QOL than TD children, especially in social functioning and school functioning subdomains.


Assuntos
Cuidadores , Síndrome de Down , Qualidade de Vida , Humanos , Síndrome de Down/psicologia , Cuidadores/psicologia , Criança , Adolescente , Adulto Jovem
9.
J Homosex ; : 1-21, 2024 Sep 04.
Artigo em Inglês | MEDLINE | ID: mdl-39230418

RESUMO

Prior research indicates that religious parents can have negative, positive, or ambivalent responses to their child's sexual orientation and gender identity (SOGI). Yet, to our knowledge no research has quantitatively examined patterns of sexual and gender diverse (SGD) youth's perceptions of their religious parents' responses to their SOGI. Without examining variations in these patterns, we are unable to better understand the experiences of SGD youth with religious parents. In the current paper, we examined patterns of SGD youth's perceptions of their religious parents' SOGI-specific rejection, acceptance, and SOGI change efforts. We also examined if these patterns differed by SGD youth's individual and contextual factors. The analytic sample consisted of online responses from 5,686 SGD youth (Mage = 15.95). We found four distinct profiles: Positive Parental Response, Moderate Negative Parental Response, Low Parental Response, and High Negative Parental Response. The largest profile was the Positive Parental Response, suggesting that many SGD youth perceived positive responses from their religious parents. SGD youth with diverse gender identities and intersecting identities, such as race/ethnicity, were more vulnerable to religious parents' negative responses. Findings have implications for existing resources and programs aimed at strengthening SGD youth's relationship with their religious parents.

10.
Psychooncology ; 33(9): e9310, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-39261295

RESUMO

OBJECTIVE: The aim of this study is to (1) identify similarities and differences in psychosocial burdens and support needs experienced by parent, partner and adult-child caregivers and (2) identify support needs of family caregivers regarding peer support programs. METHODS: Semi-structured interviews (n = 30) were conducted with family caregivers of cancer patients. Interviews were transcribed and analyzed by inductive content analysis to identify themes. RESULTS: Ten categories of burden were identified for all three groups of caregivers. Partners emphasized the time burden through caregiving, parents and adult-child caregivers accentuated the emotional burden. All caregivers wished for peer-to-peer exchange which will provide the feeling not to be alone, to share emotions and to prepare for what will come next. Preferences for matching with peers with similar prognosis for their sick relative and similar living conditions were found. CONCLUSIONS: Partner, parent and adult-child caregivers describe similar burdens of caregiving. They wish for peer support programs that allow them to share their experiences with persons who understand their situation. Therefore, caregivers desire a good match with peers to enhance the positive outcome of peer exchange.


Assuntos
Cuidadores , Neoplasias , Grupo Associado , Apoio Social , Humanos , Cuidadores/psicologia , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Neoplasias/psicologia , Neoplasias/terapia , Idoso , Pesquisa Qualitativa , Pais/psicologia , Filhos Adultos/psicologia , Entrevistas como Assunto , Adaptação Psicológica , Efeitos Psicossociais da Doença , Cônjuges/psicologia
11.
Attach Hum Dev ; : 1-21, 2024 Sep 12.
Artigo em Inglês | MEDLINE | ID: mdl-39264241

RESUMO

This study used the Actor-Partner Interdependence Model to examine how parents' adult attachment influences their their own and the partners' co-parenting and parent-child relationships. Participants were from a cross-sectional sample of 1313 Chinese heterosexual married couples (fathers' Mage = 39.74, SD = 5.61; mothers' Mage = 37.55, SD = 5.04) whose biological children were pupils (Mage = 10.25, SD = 2.35). Results revealed that: (a) Couple members' actor effects from adult attachment avoidance to positive and negative co-parenting and parent-child closeness and conflict were found both significant; (b) The actor effects from adult attachment anxiety to negative co-parenting and parent-child conflict were found significant, whereas only partner effect from attachment avoidance to positive co-parenting and from attachment anxiety to parent-child conflict were significant. The results highlight the negative effects of parents' attachment avoidance and anxiety on their partners' parenting function.

12.
J Pediatr Surg ; : 161687, 2024 Aug 13.
Artigo em Inglês | MEDLINE | ID: mdl-39237378

RESUMO

BACKGROUND: Quality of life (QOL) is an important clinical endpoint in paediatric chronic conditions. How parent-proxy reports differ from child self-reported QOL in patients with anorectal malformation (ARM) and Hirschsprung's disease (HD) has not been well examined to date. This study evaluates agreement between parent-proxy and child-reported QOL scores in ARM and HD patients compared to healthy controls. METHODS: We recruited ARM and HD patients aged 5-17 years and their parents at four tertiary referral centres between December 2020 to February 2023 who had corrective surgery done >12 months prior. Healthy controls were age-matched and gender-matched. They completed the Pediatric Quality of Life Inventory™ (PedsQL™) Generic Core Scales and General Well-Being (GWB) Scale. The questionnaires were administered in parallel parent-proxy-report and child self-report formats. Appropriate statistical analysis was performed with p < 0.05 significance. Data are reported as median (interquartile range). Ethical approval was obtained. RESULTS: There were 65 ARM, 54 HD and 83 controls. There were no significant differences between parent-reported scores and child-reported scores overall in the Total, Psychosocial Health and Physical Health components of Core Scales for ARM, HD and controls. However, parent-reported scores were significantly higher than child-reported scores overall in ARM, HD and controls in the GWB Scale. CONCLUSION: Our findings show that parent-rated and child-rated overall QOL was similar in Core Scales for ARM, HD, and controls. However, parents overestimated child's overall GWB for ARM, HD and controls. This highlights the importance of capturing the perspectives of both parents and children to inform strategies to improve patient care. LEVEL OF EVIDENCE: Level III.

13.
Artigo em Inglês | MEDLINE | ID: mdl-39238105

RESUMO

This review aims to consolidate and appraise evidence exploring the caregiver burden of parents of children with mental disorders. A mixed-studies review structure was adopted and six electronic databases (PubMed, CINAHL, PsycINFO, Embase, Scopus and ProQuest Dissertations and Theses Global) were searched from each database's inception date until September 2023. Thomas & Harden's thematic analysis framework was utilised for data analysis. Twenty-three studies were included in this review. The results-based convergent integration method identified an overarching theme titled 'hiding behind the walls on fire, engulfed in chaos: dark and alone', three main themes named 'Invisible scars': role of psychological factors on caregiver burden, navigating through social and economic influences on caregiving burden, and influence of illness-related variables and nine subthemes. This review highlighted that the parents perceived insufficient support from healthcare providers and a lack of insight regarding their children's medical condition as the primary contributors to the burden experienced. It is imperative for healthcare professionals to collaboratively engage with parental caregivers, offering accessible treatment options for their children with mental disorders and providing comprehensive educational resources to facilitate a profound understanding of their children's mental health conditions. In addition to addressing caregivers' informational needs, the establishment of an integrated support system is advocated, one involving active participation from healthcare professionals, healthcare institutions, community resources, social services and policymakers. This holistic approach could better meet the multifaceted needs of caregivers, encompassing psychosocial, emotional and financial aspects. Trial Registration: International Prospective Register of Systematic Reviews: PROSPERO ID: CRD42022363420.

14.
J Pediatr Nurs ; 79: 100-106, 2024 Sep 07.
Artigo em Inglês | MEDLINE | ID: mdl-39244819

RESUMO

PURPOSE: To describe the perceived physical and psychological needs of parents of children with allergic diseases and asthma regarding allergy management in preschools and schools. METHODS: We conducted a semi-structured focus group study with parents of children (ages 2-13 years) with different types of allergic diseases with/without asthma living in Stockholm, Sweden. Data were analyzed qualitative with systematic text condensation. RESULTS: Across 4 focus groups, involving 25 parents, four primary themes representing parents' expressed needs related to allergy management in preschools and schools emerged: (i) Well-implemented routines (to create an allergy-safe physical environment where personnel have clear responsibilities and communication); (ii) Allergy competence among personnel (basic and practical knowledge, being able to act in emergency situations); (iii) My child is to be treated equally (with equal conditions and for their child to being included); (iv) To feel trust (parents need to be understood, taken seriously and feel confident in the preschool/school personnel's ability to take care of their child in a secure way). CONCLUSION: This qualitative study shows parents needs regarding general allergy management in preschool/school. These needs emphasized well implemented allergy routines, improved allergy knowledge and competence among personnel, importance of equal conditions for children with allergic disease and establishing a trustful allergy-supportive relationship with both parents and children. IMPLICATIONS IN PRACTICE: The study findings provide crucial insights for school administrators, teachers, and health care professionals on how to improve allergy management in preschools and schools.

15.
Artigo em Inglês | MEDLINE | ID: mdl-39245975

RESUMO

Rare diseases, while individually rare, are common when considered collectively, affecting about one in 17 people across their lifetime. However, there is a lack of awareness of and education about rare diseases in nursing. To address this, the Global Nursing Network Rare Diseases (GNNRD) has been launched to connect nurses from within all fields of practice and at all levels of experience, with the aim of improving the lives of people with rare and undiagnosed diseases (RUDs). The GNNRD aims to empower nurses on a global scale through leadership, knowledge exchange and skill development and to provide a platform from which they can influence policy and advocate for patients and their families at regional, national and international levels. This article provides an overview of RUDs and some of the challenges experienced by patients and their families and describes the development and aims of the GNNRD.

16.
Front Public Health ; 12: 1414631, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39224555

RESUMO

Sexually transmitted infections (STIs) are one of the most important issues related to sexual and reproductive health, as it is estimated that more than 1 million new infections are acquired every day worldwide and data on the prevalence and incidence of these infections, especially among young people, are increasing. Nevertheless, there are some knowledge and behavioral gaps, and young people need more support from their school and family network to protect themselves and their peers. Therefore, we have designed a multicenter prospective intervention study involving public lower and upper secondary school students, their parents and teachers (ESPRIT). The intervention will take place in the school year 2023-2024, where students will meet with experts and be involved in peer education, while adults (parents and teachers) will participate in distance and face-to-face trainings. All target groups will complete KAP (knowledge, attitudes, practice) questionnaires before and after participating in the intervention to measure its effectiveness. The results of this study will help to assess and improve the level of knowledge of lower and upper secondary school students, parents and teachers about STIs and HPV in particular, raise awareness of sexual and reproductive health issues, including vaccination, among lower and upper secondary school students and their families, and evaluate the effectiveness of these interventions in terms of improving knowledge and changing attitudes and behaviors. The study protocol has been approved by the Regional Unique Ethics Committee of Friuli Venezia Giulia (CEUR-2023-Sper-34). The project is being carried out with the technical and financial support of the Italian Ministry of Health-CCM.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Infecções por Papillomavirus , Pais , Professores Escolares , Instituições Acadêmicas , Infecções Sexualmente Transmissíveis , Humanos , Itália , Adolescente , Infecções Sexualmente Transmissíveis/prevenção & controle , Pais/psicologia , Pais/educação , Infecções por Papillomavirus/prevenção & controle , Professores Escolares/psicologia , Feminino , Estudos Prospectivos , Masculino , Inquéritos e Questionários , Estudantes/psicologia , Adulto
18.
Omega (Westport) ; : 302228241272553, 2024 Sep 06.
Artigo em Inglês | MEDLINE | ID: mdl-39240786

RESUMO

Hope is a complex and ever-evolving personal phenomenon that plays a vital role in individuals' abilities to cope with stressful events. This is particularly true for parents who are coping with the traumatic loss of a child. However, the topic of hope in this context is often inadequately addressed. The primary objective of this paper is to gain insight into the hope held by Finnish parents following the traumatic loss of a child. This qualitative study unfolded in two phases. A total of 117 participants took part in the study, including 108 females, 5 males, and 4 individuals who chose not to disclose their sex. Subsequently, 17 parents participated in in-depth phone interviews. Thematic analysis was conducted to identify key themes. Several themes emerged from the analysis, including the endurance of hope amidst uncertainty, the hope for a reunion based on faith, hope directed towards family members, and moments of hopelessness regarding the future. The findings of this research are pivotal in enhancing our comprehension of the challenges faced by grieving parents in the aftermath of a child's traumatic death. Moreover, this study holds significant relevance for professionals who work with bereaved parents following the traumatic loss of a child.

19.
JMIR Form Res ; 8: e57588, 2024 Sep 06.
Artigo em Inglês | MEDLINE | ID: mdl-39241226

RESUMO

This single-participant case study examines the feasibility of using custom virtual reality (VR) gaming software in the home environment for low-dose Hand Arm Bimanual Intensive Training (HABIT). A 10-year-old with right unilateral cerebral palsy participated in this trial. Fine and gross motor skills as well as personal goals for motor outcomes were assessed before and after the intervention using the Box and Blocks Test, Nine-Hole Peg Test, and Canadian Occupational Performance Measure. Movement intensities collected via the VR hardware accelerometers, VR game scores, and task accuracy were recorded via the HABIT-VR software as indices of motor performance. The child and family were instructed to use the HABIT-VR games twice daily for 30 minutes over a 14-day period and asked to record when they used the system. The child used the system and completed the 14-hour, low-dose HABIT-VR intervention across 22 days. There was no change in Box and Blocks Test and Nine-Hole Peg Test scores before and after the intervention. Canadian Occupational Performance Measure scores increased but did not reach the clinically relevant threshold, due to high scores at baseline. Changes in motor task intensities during the use of VR and mastery of the VR bimanual tasks suggested improved motor efficiency. This case study provides preliminary evidence that HABIT-VR is useful for promoting adherence to HABIT activities and for the maintenance of upper extremity motor skills in the home setting.


Assuntos
Paralisia Cerebral , Estudos de Viabilidade , Realidade Virtual , Humanos , Paralisia Cerebral/reabilitação , Paralisia Cerebral/fisiopatologia , Criança , Masculino , Destreza Motora/fisiologia , Jogos de Vídeo , Braço , Mãos/fisiologia , Feminino
20.
Cureus ; 16(8): e66129, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-39229410

RESUMO

Background Despite the success of childhood vaccination in reducing vaccine-preventable diseases (VPDs), vaccine hesitancy remains a significant challenge in several countries, such as Saudi Arabia, both during and beyond the COVID-19 era. Furthermore, the pandemic may have impacted vaccine hesitancy trends, potentially affecting parents' intentions to adhere to scheduled childhood vaccination programs. Aim This article aims to assess the extent of parents' hesitancy toward childhood vaccination, determine if it increased or decreased due to the COVID-19 pandemic, highlight the factors and determinants that influenced this hesitancy, whether positively or negatively, during the COVID-19 era, and estimate the acceptance of COVID-19 vaccination in relation to the acceptance of scheduled childhood vaccination. Methods A cross-sectional study was conducted in Saudi Arabia through a snowball sampling technique. Data were collected between September 2022 and October 2022 using an online survey using Google Forms. The inclusion criteria were parents or guardians in Saudi Arabia with a child up to 18 years of age. Responses were analyzed using SPSS V25 (IBM Corp., Armonk, NY, US), with chi-square tests and logistic regression performed to compare hesitancy and vaccination status. Results Among the 1,209 parents and care providers who participated, the prevalence of parents' vaccine hesitancy was 374 (30.9%). The educational level of the parents was not significantly associated with hesitancy status (p 0.490). The most refused vaccine was Mpox (345; 28.5%), whereas the one that caused the most hesitancy was the COVID-19 vaccine (352; 29.1%). Regarding the parents' concerns, the main reason for their hesitancy was the influence of their negative perceptions from social media content, including false or misleading information and negative allegations about vaccines, reported by 449 (18.98%) of the participants. Logistic regression analysis indicated that negative social media perceptions significantly increased the likelihood of vaccine hesitancy (OR = 2.15, 95% CI = 1.78-2.60, p < 0.001). Conclusion Our study highlights the prevalence of parental vaccine hesitancy during the COVID-19 era; the most significant hesitancy was observed toward the COVID-19 vaccine, and the mpox vaccine was the most rejected. Negative social media was the main reason for parental hesitancy; public health efforts should focus on providing accurate and easily accessible information through educational campaigns on social media and other platforms.

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