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1.
J Matern Fetal Neonatal Med ; 37(1): 2334846, 2024 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-38584146

RESUMEN

INTRODUCTION: Neural tube defects (NTDs) represent a spectrum of heterogeneous birth anomalies characterized by the incomplete closure of the neural tube. In Jordan, NTDs are estimated to occur in approximately one out of every 1000 live births. Timely identification of NTDs during the 18-22 weeks of gestation period offers parents various management options, including intrauterine NTD repair and termination of pregnancy (TOP). This study aims to assess and compare parental knowledge and perceptions of these management modalities between parents of affected children and those with healthy offspring. MATERIALS AND METHODS: This retrospective case-control study was conducted at Jordan University Hospital (JUH) using telephone-administered questionnaires. Categorical variables were summarized using counts and percentages, while continuous variables were analyzed using mean and standard deviation. The association between exposure variables and outcomes was explored using binary logistic regression. Data analysis was performed using SPSS for Windows version 26 (SPSS Inc., Chicago, IL). RESULTS: The study sample comprised 143 participants, with 49.7% being parents of children with NTDs. The majority of NTD cases were associated with unplanned pregnancies, lack of folic acid supplementation, and postnatal diagnosis. Concerning parental knowledge of TOP in Jordan, 86% believed it to be legally permissible in certain situations. However, there was no statistically significant difference between cases and controls regarding attitudes toward TOP. While the majority of parents with NTD-affected children (88.7%) expressed a willingness to consider intrauterine surgery, this percentage decreased significantly (to 77.6%) after receiving detailed information about the procedure's risks and benefits (p = .013). CONCLUSIONS: This study represents the first case-control investigational study in Jordan focusing on parental perspectives regarding TOP versus intrauterine repair of myelomeningocele following a diagnosis of an NTD-affected fetus. Based on our findings, we urge the implementation of a national and international surveillance program for NTDs, assessing the disease burden, facilitating resource allocation toward prevention strategies, and promoting early diagnosis initiatives either by using newly suggested diagnostic biomarkers or early Antenatal ultrasonography.


Asunto(s)
Ácido Fólico , Defectos del Tubo Neural , Niño , Embarazo , Femenino , Humanos , Jordania/epidemiología , Estudios de Casos y Controles , Estudios Retrospectivos , Defectos del Tubo Neural/diagnóstico , Defectos del Tubo Neural/epidemiología , Defectos del Tubo Neural/terapia , Padres
2.
Rev Bras Enferm ; 77(1): e20220811, 2024.
Artículo en Inglés, Portugués | MEDLINE | ID: mdl-38511784

RESUMEN

OBJECTIVES: to identify scientific evidence regarding nursing care for parents who have experienced grief following fetal demise. METHODS: an integrative review of original studies was conducted across six databases. The studies were classified according to the level of evidence. RESULTS: the qualitative analysis of the nine studies comprising the sample involved thematic categories, exploring the impact of perinatal loss on families, inadequate communication by healthcare professionals, and the importance of a holistic approach in care. The role of the nurse is highlighted in making a positive contribution to the team, emphasizing participation in training and the provision of essential information. FINAL CONSIDERATIONS: grieving affects not only family dynamics but also the social environment, emphasizing the urgency of a more empathetic and comprehensive approach. Care should be holistic, going beyond technical nursing assistance, and addressing the biopsychosocial context of the parents.


Asunto(s)
Atención de Enfermería , Padres , Femenino , Embarazo , Humanos , Padres/psicología , Pesar , Comunicación , Muerte Fetal
3.
Res Dev Disabil ; 147: 104688, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38431998

RESUMEN

BACKGROUND: Prognostic factors from naturalistic treatment studies of children with Autism Spectrum Disorder (ASD) remain largely unknown. We aimed to identify baseline and treatment-related prognostic predictors at 1-year follow-up after Integrative Care Practices (ICPs). METHODS: Eighty-nine preschool children with severe ASD were given ICP combining nine therapeutic workshops based on children's needs. Participants were assessed at baseline and during 12 months follow-up with the Psycho-educational Profile-3-R, Children Autism Rating Scale, Parental Global Impression, and the Autistic Behaviors Scale. We assessed prognostic predictors using multivariable regression models and explored treatment ingredients influencing outcome using Classification and Regression Trees (CART). RESULTS: Multivariable models showed that being a child from first generation immigrant parents predicted increased maladaptive behaviors, whereas play activities had an opposite effect; severity of ASD symptoms and impaired cognitive functions predicted worse autism severity at follow-up; and lower play activities predicted worse parent impression. Regarding treatment effects, more emotion/behavioral interventions predicted better outcomes, and more communication interventions predicted lower autism severity, whereas more education and cognitive interventions had an opposite effect. CART confirmed that more hours of intervention in the emotion/behavioral domain helped classifying cases with better outcomes. More parental support was associated with decreased maladaptive behaviors. Sensorimotor and education interventions also significantly contributed to classifying cases according to outcomes but defined subgroups with opposite prognosis. CONCLUSION: Children who exhibited the best prognosis following ICPs had less autism severity, better cognition, and non-immigrant parents at baseline. Emotion/behavior interventions appeared key across all outcomes and should be promoted.


Asunto(s)
Trastorno del Espectro Autista , Preescolar , Humanos , Trastorno del Espectro Autista/psicología , Estudios Longitudinales , Estudios Prospectivos , Emociones , Padres/psicología
4.
Sleep Med ; 117: 169-176, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38554532

RESUMEN

OBJECT: Sleep problems often accompany ADHD and negatively affect ADHD symptoms, however, there are not enough intervention studies on sleep interventions in children with ADHD. The present study investigated the effects of sleep hygiene training (SH) and progressive muscle relaxation exercises (PMR) in children with ADHD. METHOD: 57 children aged 6-12 years with ADHD were randomly assigned to the SH and SH + PMR groups and completed the intervention consisting of group training and eight weeks of telephone interviews. The effects of both intervenitons were evaluated via parent, child and clinician report scales and neuropsychological tests. RESULTS: Both interventions resulted in significant positive changes in child sleep, ADHD symptoms, functioning, neuropsychological tests and parental sleep quality. Significant differences were found between the interventions in selective attention, peer problems and anxiety scores in favor of the SH + PMR group. CONCLUSION: SH may have positive effects on various clinical parameters as well as sleep problems in children with ADHD. Addition of PMR to SH may lead to further improvements in anxiety, peer problems and selective attention. SH and PMR may be a useful tool in the clinical management of children with ADHD with sleep problems.


Asunto(s)
Trastorno por Déficit de Atención con Hiperactividad , Trastornos del Sueño-Vigilia , Niño , Humanos , Higiene del Sueño , Trastorno por Déficit de Atención con Hiperactividad/complicaciones , Trastorno por Déficit de Atención con Hiperactividad/terapia , Trastorno por Déficit de Atención con Hiperactividad/psicología , Entrenamiento Autogénico , Padres/psicología , Trastornos del Sueño-Vigilia/terapia
5.
J Pediatr Gastroenterol Nutr ; 78(4): 862-870, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38426724

RESUMEN

OBJECTIVES: The impact of disease burden extends beyond pediatric inflammatory bowel disease (IBD) patients to include their parents. Previous studies, predating the biologic era, have highlighted parental concerns about potential side effects associated with IBD medications. However, there is a notable gap in the literature regarding parents' perceptions of clinical studies involving pediatric IBD patients. This study aims to explore the specific concerns troubling parents of children with IBD, identifying factors influencing these concerns, and assesses parental willingness to allow their child's participation in clinical studies. METHODS: Utilizing social media, we disseminated an anonymous questionnaire to parents of pediatric IBD patients. The questionnaire encompassed queries about parental willingness for their child to partake in clinical studies, aspects of the disease deemed bothersome, and the sense of coherence scale (SOC). RESULTS: Responses were obtained from 101 parents, with a mean age of 46.4, of whom 82.2% were female. Concerns about potential future side effects of their child's medications surpassed worries about disease symptoms (80.04% vs. 73.47%). Linear regression analysis revealed that parents with lower SOC scores, limited medical care accessibility, and a higher age of the child at diagnosis, exhibited heightened concerns about the future impact of the disease on their child (p = 0.016, 0.003, and 0.045, respectively). While a majority rejected participation in studies involving new medications (54.5%), there was greater agreement for studies on nutritional therapies (84.2%) and complementary medicine (91.1%). Classification tree analysis indicated that women were more inclined to permit their child's participation in studies focusing on complementary medicine (adjusted p = 0.002). CONCLUSION: Parents of IBD patients express greater apprehension about potential side effects from IBD medications and display reluctance toward their child participating in clinical studies related to medications.


Asunto(s)
Terapias Complementarias , Enfermedades Inflamatorias del Intestino , Niño , Humanos , Femenino , Persona de Mediana Edad , Masculino , Padres , Encuestas y Cuestionarios , Costo de Enfermedad
6.
BMC Public Health ; 24(1): 775, 2024 Mar 12.
Artículo en Inglés | MEDLINE | ID: mdl-38475730

RESUMEN

BACKGROUND: The relationship between parental age at pregnancy and offspring development in low- and middle-income countries remains unclear. We aimed to examine the associations of parental age at pregnancy with adolescent development in rural China. METHODS: We conducted a prospective birth cohort study of offspring born to pregnant women who participated in an antenatal micronutrient supplementation trial in rural Western China. Adolescent cognitive development and emotional and behavioural problems were assessed by using the Wechsler Intelligence Scale for Children-IV and the Youth Self-Report-2001, respectively. After accounting for the possible nonlinear relationships, we examined the linear associations between parental age (in years) at pregnancy and scores of adolescent cognitive development and emotional and behavioural problems by performing generalized estimating equations. RESULTS: Among 1897 adolescents followed from birth to early adolescence, 59.5% were male with a mean age of 11.8 (standard deviation (SD): 0.8) years. The mean ages of mothers and fathers at pregnancy were 24.6 (SD: 4.4) and 27.9 (SD: 4.1) years old, respectively. All the P values of the nonlinear terms between parental age and adolescent development in all domains were greater than 0.05. Each one-year increase in maternal age at pregnancy was associated with a 0.29-point (95% confidence interval (CI) 0.06, 0.52) increase in the full-scale intelligence quotient in early adolescence. After parental age was categorized into quartiles, the total behavioural problem scores of adolescents with fathers with an age in the fourth quartile (Q4) were 6.71 (95% CI 0.86, 12.57) points higher than those of adolescents with fathers with an age in the first quartile (Q1), with a linear trend P value of 0.01. Similarly, higher scores (worse behavioural problems) were observed for internalizing behavioural problems and other emotional and behavioural symptoms related to anxiety, withdrawal, social problems, thought problems and aggressive behaviour. CONCLUSIONS: At conception, older maternal age was independently linked to better adolescent cognitive development, whereas advanced paternal age was independently associated with a greater risk of adolescent emotional and behavioral problems. These findings suggest that public health policies targeting an optimal parental age at pregnancy should be developed in the context of offspring developmental consequences.


Asunto(s)
Desarrollo del Adolescente , Cohorte de Nacimiento , Adolescente , Niño , Femenino , Humanos , Masculino , Embarazo , Cognición , Estudios de Cohortes , Madres/psicología , Padres/psicología , Estudios Prospectivos , Adulto , Adulto Joven , Ensayos Clínicos como Asunto
7.
BMC Palliat Care ; 23(1): 66, 2024 Mar 08.
Artículo en Inglés | MEDLINE | ID: mdl-38454420

RESUMEN

BACKGROUND: Parent-reported experience measures are part of pediatric Quality of Care (QoC) assessments. However, existing measures were not developed for use across multiple healthcare settings or throughout the illness trajectory of seriously ill children. Formative work involving in-depth interviews with parents of children with serious illnesses generated 66 draft items describing key QoC processes. Our present aim is to develop a comprehensive parent-reported experience measure of QoC for children with serious illnesses and evaluate its content validity and feasibility. METHODS: For evaluating content validity, we conducted a three-round Delphi expert panel review with 24 multi-disciplinary experts. Next, we pre-tested the items and instructions with 12 parents via cognitive interviews to refine clarity and understandability. Finally, we pilot-tested the full measure with 30 parents using self-administered online surveys to finalize the structure and content. RESULTS: The Delphi expert panel review reached consensus on 68 items. Pre-testing with parents of seriously ill children led to consolidation of some items. Pilot-testing supported feasibility of the measure, resulting in a comprehensive measure comprising 56 process assessment items, categorized under ten subthemes and four themes: (1) Professional qualities of healthcare workers, (2) Supporting parent-caregivers, (3) Collaborative and holistic care, and (4) Efficient healthcare structures and standards. We named this measure the PaRental Experience with care for Children with serIOUS illnesses (PRECIOUS). CONCLUSIONS: PRECIOUS is the first comprehensive measure and has the potential to standardize assessment of QoC for seriously ill children from parental perspectives. PRECIOUS allows for QoC process evaluation across contexts (such as geographic location or care setting), different healthcare workers, and over the illness trajectory for children suffering from a range of serious illnesses.


Asunto(s)
Padres , Calidad de la Atención de Salud , Niño , Humanos , Padres/psicología , Cuidadores , Personal de Salud , Consenso , Encuestas y Cuestionarios
8.
J Pediatr Nurs ; 76: 167-175, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38412708

RESUMEN

PROBLEM: Despite reporting significant systemic barriers to providing care, burden among parental caregivers of children with medical complexity (CMC) is often attributed to stressors related to disease management. The relationship between parental caregiver burden and systemic barriers within the healthcare bureaucracy, as defined by Ray's Theory of Bureaucratic Caring (BCT), has not been explored. The purpose of this integrative review was to examine which elements of the bureaucratic healthcare system are contributing to burden among parental caregivers of CMC living at home. ELIGIBILITY CRITERIA: Refereed research articles related to the experiences of parental caregivers of CMC living in the United States published after 2014. SAMPLE: 1967 articles were obtained on initial literature search. Using the PRISMA algorithm, ten articles published between 2018 and 2022 were ultimately selected for appraisal. RESULTS: Parental caregiver burden was consistently attributed to barriers and gaps among social-cultural, physical, political, legal, economic, technological, and educational elements of the bureaucratic healthcare system. CONCLUSIONS: Weaknesses across the bureaucratic elements of the healthcare system prevent CMC from consistently receiving necessary care which in turn, contribute to feelings of burden among their parental caregivers. Efforts to alleviate burden experienced by parental caregivers should focus on addressing gaps within the healthcare bureaucracy. IMPLICATIONS: Nurses are well-positioned to address these gaps through clinical work, advocacy, and research. Future research should further examine the appropriateness of using BCT to better understand the implications of systems-level weaknesses on parental caregiver burden. Parental caregivers of CMC should be closely involved in this process.


Asunto(s)
Cuidadores , Humanos , Niño , Cuidadores/psicología , Estados Unidos , Padres/psicología , Servicios de Atención de Salud a Domicilio , Enfermedad Crónica/terapia , Femenino , Masculino , Carga del Cuidador/psicología
9.
J Clin Nurs ; 33(5): 1593-1603, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38345102

RESUMEN

AIM: To describe a synthesis of the experience related to the spirituality of those living a bereavement journey in primary qualitative studies. DESIGN: A systematic review of qualitative studies. DATA SOURCE: A systematic review was carried out in March 2019 and was updated in January 2023. Searching was accomplished by an online database, such as CINAHL, MEDLINE, PsycINFO, MedicLatina, LILACS, SciELO and Academic Search Complete. The search strategy did not consider a timeline as an eligibility criterion. The quality of the studies was assessed, and a thematic synthesis was performed in this review. METHODS: A systematic review of qualitative studies was conducted according to Saini and Shlonsky's methodology. REPORTING METHOD: PRISMA checklist. RESULTS: The review included 33 articles. Most of the studies were phenomenological and focused on parents' and family experiences of bereavement. Seven significant categories emerged, which match unmet spiritual needs during the grieving process. Two major categories were identified regarding the role of spirituality in bereavement: Spirituality as a process and spirituality as an outcome. CONCLUSION: In clinical practice, attention to spirituality and providing spiritual care is critical to guarantee a holistic approach for those experiencing bereavement. IMPLICATIONS: The findings of our study could foster awareness that healthcare professionals should include the spiritual dimension in their clinical practice to provide holistic care to individuals, enhancing the healing process in bereavement. NO PATIENT OR PUBLIC CONTRIBUTION: This is a systematic review.


Asunto(s)
Aflicción , Terapias Espirituales , Humanos , Espiritualidad , Pesar , Padres
10.
Pediatr Blood Cancer ; 71(5): e30913, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38337169

RESUMEN

BACKGROUND: Children with cancer (ages 3-8 years) and their parents experience significant, interrelated distress associated with cancer treatment. Active music engagement (AME) uses music-based play and shared music-making to mitigate this distress. To advance our understanding about how AME works and its essential features, we interviewed parents who received the AME intervention as part of a multi-site mechanistic trial. The purpose of this qualitative analysis was to describe parents' experiences of AME for themselves and their child and to better understand how the intervention worked to lower parent-child distress. PROCEDURE: We conducted a total of 43 interviews with parents/caregivers, and purposively analyzed all interviews from underrepresented groups based on race/ethnicity and parent role. We used thematic analysis and achieved thematic redundancy after analyzing 28 interviews. RESULTS: The following statement summarizes resulting themes: Music therapists skillfully use AME to create a safe and healthy space (Theme 1), where parents/children have transformative experiences (Theme 2) that lead to learning and enactment (Theme 3) of new skills that counteract suffering (Theme 4) through empowerment, connectedness, and sustained relief. CONCLUSIONS: This work elucidates how AME works to counteract stressful qualities of cancer treatment. As parents witnessed positive and transformative changes in their child, they experienced relief and reported shifts in their perspective about cancer treatment. This led to learning and use of music as a coping strategy that extended beyond therapist-led sessions. Accessible, music-based interventions, like AME, offer a developmentally appropriate and effective way to support parents and young children during treatment.


Asunto(s)
Musicoterapia , Música , Neoplasias , Preescolar , Humanos , Habilidades de Afrontamiento , Musicoterapia/métodos , Neoplasias/terapia , Padres , Estrés Psicológico/terapia , Niño , Estudios Multicéntricos como Asunto , Ensayos Clínicos como Asunto
11.
Matern Child Health J ; 28(6): 1010-1019, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38353888

RESUMEN

OBJECTIVES: In 2018, approximately 2.3 million children in the United States had unmet healthcare needs (UHCN). To date, studies examining associations between UHCN and parent stress and support have had limited generalizability. This study aimed to investigate the relationship between children's UHCN and parenting stress and support using a nationally representative sample. Additionally, this study aimed to assess associations between unmet mental health needs and these parental well-being measures. METHODS: Households with children ages 0-17 and complete data on UHCN in the combined 2016, 2017, 2018, and 2019 cohorts of the National Survey of Children's Health (NSCH) met inclusion criteria. Logistic regressions were used to evaluate associations between overall UHCN and outcome measures of parental coping, aggravation, emotional support, and neighborhood support. Associations between mental UHCN and these outcome measures were analyzed in a subset limited to children with mental health conditions. Regressions were adjusted for potential confounders, including demographics, household income, medical home status, and health insurance (adequacy/type). RESULTS: In our sample of 131,299 children, overall UHCN were associated with poorer parental coping (aOR = 5.35, 95% CI: [3.60, 7.95]), greater parental aggravation (aOR = 3.35, 95% CI: [2.73, 4.12]), and non-supportive neighborhood (aOR = 2.22, 95% CI: [1.86, 2.65]). Mental UHCN were similarly associated with parental coping and aggravation and neighborhood support in the mental health subset. CONCLUSIONS FOR PRACTICE: Healthcare professionals must address the needs of children with UHCN and collaborate with community organizations and child advocates to promote coordinated and comprehensive care and adequately support caregivers.


Asunto(s)
Necesidades y Demandas de Servicios de Salud , Responsabilidad Parental , Apoyo Social , Estrés Psicológico , Humanos , Femenino , Masculino , Niño , Estrés Psicológico/psicología , Preescolar , Responsabilidad Parental/psicología , Adolescente , Estados Unidos , Lactante , Adulto , Padres/psicología , Adaptación Psicológica , Recién Nacido
12.
J Pediatr Nurs ; 76: e69-e76, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38307760

RESUMEN

OBJECTIVE: To determining level and factors affecting Family Centered Care (FCC) in pediatric oncology unit of Tikur Anbessa Specialized hospital (TASH), Ethiopia. METHOD: A cross sectional study was conducted from June to December 2022. Three hundred ninety-three parents of children with cancer were consecutively interviewed using Measure of Processes of Care (MPOC-20). Multivariable linear regression was used to identify independent predictors of FCC. RESULT: The total MPOC 20 means was 3.71(SD = 1.04). The mean score for respectful and supportive care, coordinated and comprehensive care, enabling and partnership, providing specific information and providing general information were found to be 4.8, 4.6, 3.7, 2.3 and 2.6, respectively. Family employment (-0.33(95% CI = -0.63, -0.03; P = .029)), low family education (-0.40 (95% CI = -0.70, -0.11; P = .008)), referral cases (-0.37(95% CI = -0.59, -0.14; P = .001)), shorter time spent in hospital (-0.49(95% CI = -0.85, -0.12; P = .010)) and psychological distress (-0.01(95% CI = -0.026, -0.001; P = .028)) were associated with lower mean score of FCC. CONCLUSION: The total FCC mean score was found to be low. From the five FCC components providing general and specific information scored the lowest mean level. PRACTICE IMPLICATIONS: Mechanism to improve information delivery that address parents from different background and referred from other health facility should be in place in order to improve FCC level. In addition, the FCC should be designed to address parents of children with different lengths of stay.


Asunto(s)
Neoplasias , Padres , Humanos , Etiopía , Masculino , Femenino , Estudios Transversales , Niño , Neoplasias/terapia , Neoplasias/psicología , Neoplasias/enfermería , Padres/psicología , Adulto , Centros de Atención Terciaria , Atención Dirigida al Paciente , Preescolar
13.
BMC Palliat Care ; 23(1): 43, 2024 Feb 15.
Artículo en Inglés | MEDLINE | ID: mdl-38355521

RESUMEN

BACKGROUND: Few studies have examined the spiritual environment of parents of children receiving palliative care in Southern European countries, which are mostly characterized by secularization (or the abandonment of traditional religiosity) and an increase of cultural and religious diversities resulting in a much broader spectrum of spiritual and religious beliefs. This study aimed to explore the parents' own spirituality, religiosity, and philosophy of life in coping with the care of their child with palliative needs. METHODS: Qualitative interviews of 14 parents of children included in a palliative care program in a pediatric hospital in Barcelona, Spain. Inclusion criteria were parents of children who have been cared for the palliative care program for a minimum of 3 months and who displayed a willingness to talk about their personal experiences and gave written consent. Interviews were audio-recorded, transcribed by an independent service, and analyzed on a case-by-case basis using Interpretative Phenomenological Analysis. RESULTS: The three domains identified were life philosophy, relational, and transcendent. Life philosophy included principles that guided parents' decision-making, and how the onset of their child's serious illness had promoted a change in their values. Relational was focused on how they perceived themselves (e.g. motherhood), others (e.g. one's own child exceptionality), and the way they believed others perceived and supported them (e.g. relatives, friends, and healthcare providers). The transcendent domain involved God-related concepts, divinity and divine intervention (e.g. a miracle as an interpretive framework for that which cannot be explained within scientific knowledge limitations). CONCLUSIONS: Inflexible categories identifying parents as having a particular religious faith tradition are not sufficient to capture the interrelation of knowledges (ethical, religious, scientific) that each parent generates when faced with their child receiving palliative care. Clinicians should explore parents' spirituality in an individualized way that responds to the uniqueness of their experiential process.


Asunto(s)
Cuidados Paliativos , Espiritualidad , Niño , Humanos , Cuidados Paliativos/métodos , Religión , Padres , Filosofía
14.
Orphanet J Rare Dis ; 19(1): 68, 2024 Feb 14.
Artículo en Inglés | MEDLINE | ID: mdl-38355619

RESUMEN

BACKGROUND: Genetic diagnosis is often understood as a single event within the care pathway of rare disease patients. Legal, policy and ethical scholarship focusing on rare diseases and genetic information discusses questions of how to best deal with the process of genetic diagnosis and the communication of genetic information within a given health system. We co-created a research design with rare disease patients and their families in Austria to explore in-depth the experiences of genetic diagnosis for people affected by rare diseases. Our objective was to trace the whole pathway of genetic testing and understand how rare disease patients experience genetic diagnosis as part of their care pathway in the healthcare system. RESULTS: Data was collected through in-depth semi-structured qualitative interviews with 14 patients with a suspected or diagnosed rare disease or their parents, focusing on their perception of the pathway of genetic diagnosis in Austria. This pathway included the initial triggering of genetic diagnosis, the process of testing and its immediate (communication of results, counselling) and long-term, wider aftermath. Patients missed a clear link to already established forms of care such as their primary care/treating physicians. They also advocate for an integrated and interdisciplinary care pathway. CONCLUSIONS: Our study underscores the importance of a continuous care and communication pathway spanning from the initial genetic diagnosis process to post-test phases. It further shows the importance of exploring patients' perspectives through qualitative research methods to understand the intricate workings of public health policies and tools. Integrating genetic diagnosis into a broader care trajectory is crucial for a holistic approach to care for rare disease patients who often rely on regular interactions with the healthcare system. Achieving this holistic approach requires collaboration between experts in specific rare disease areas, primary care physicians, and support networks.


Asunto(s)
Padres , Enfermedades Raras , Humanos , Enfermedades Raras/diagnóstico , Enfermedades Raras/genética , Investigación Cualitativa , Austria
15.
J Nurs Scholarsh ; 56(3): 357-370, 2024 05.
Artículo en Inglés | MEDLINE | ID: mdl-38168092

RESUMEN

INTRODUCTION: Individuals with serious mental illness often have persistent and disruptive symptoms. These can profoundly affect their children's lives, exposing them to adverse social and psychological conditions. Such conditions can result in traumatic lived experiences during childhood, which can carry over into adulthood, influencing their self-perceptions and shaping their attitudes toward themselves and society. To gain insights into this phenomenon, this study explored the lived experiences of adults who grew up with a parent with serious mental illness and their perceptions of their lives in adulthood. DESIGN: This study used an interpretive phenomenological design. METHODS: Participants were invited to voluntarily participate in the study through a call posted on social media. Semi-structured interviews were conducted with 30 adults (age range, 20-55 years) who grew up with a parent with serious mental illness. The interviews were recorded and transcribed, and inductive thematic analysis was used to identify main and overarching themes. RESULTS: The overarching theme of transition from childhood survival to adulthood survival emerged and included four main themes: (1) a traumatic childhood, (2) perceived control, (3) resilience and general self-efficacy, and (4) adult quality of life. A traumatic childhood consisted of experiences of neglect and abuse, while participants used perceived control to achieve personal growth, self-care, and care of others. Resilience and general self-efficacy emerged during the transition to adulthood and helped participants further their social status and strengthen family bonds. Lastly, adult quality of life was described as being disturbed by feelings of loneliness and being burdensome, stemming from an inherent tendency to rely solely on themselves, leading to trust issues and mental health complications. Therefore, these adults found it difficult to reach out and get help or treatment for their concerns, as they initially did not want to appear dysfunctional or in need. CONCLUSION: This study has illuminated the lived experiences of a specific, vulnerable population that has not been intentionally explored until now. To delve into these experiences, we employed a distinctive qualitative approach, merging the interpretive phenomenological perspective with an inductive thematic analysis. This allowed for rich insight with a relatively large group of participants and enabled an in-depth exploration within this methodological framework. Consequently, this study constitutes a notable contribution to the extant body of knowledge, exploring the intricacies of personal growth and its impact on participants' quality of life. It uncovers the essence of resilience and general self-efficacy, revealing how these elements intertwine with the negative results observed. However, the study findings emphasize the need for healthcare professionals, including nurses and other caregivers, to be mindful of the long-lasting effects of the adverse experiences of children of patients with serious mental illness. Prioritizing active clinical assessment and implementing tailored interventions to address such children's specific needs and difficulties across different developmental stages is imperative. Such comprehensive and targeted approaches are crucial in providing appropriate support and promoting the well-being of these individuals. CLINICAL RELEVANCE: Enhanced clinical attention in holistic psychiatric care is crucial for individuals and their relatives, especially children. Comprehensive assessments of children and adults raised by seriously mentally ill parents can enable tailored and preventive interventions, positively impacting overall quality of life.


Asunto(s)
Trastornos Mentales , Calidad de Vida , Humanos , Adulto , Masculino , Femenino , Persona de Mediana Edad , Calidad de Vida/psicología , Trastornos Mentales/psicología , Investigación Cualitativa , Padres/psicología , Adaptación Psicológica , Adulto Joven , Hijo de Padres Discapacitados/psicología , Resiliencia Psicológica
16.
J Pediatr Nurs ; 75: e176-e183, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38245385

RESUMEN

AIM: The study determines the relationship between resilience and burnout in parents of children with chronic diseases and the influencing factors. METHOD: The study was conducted with a descriptive design. The study population consisted of the parents of children with any chronic illness who applied to the pediatric outpatient clinics of a state hospital located in a province in the northeast of Turkey. The study sample consisted of 207 parents who came to the hospital between October 2020 and June 2022, who met the criteria, and agreed to participate. "Descriptive Information Form," "Family Resilience Scale (FRS)," and "Burnout Inventory (BI)" were employed to collect data. The data were analyzed using the SPSS for Windows 22 package program. RESULTS: 37.2% of the parents participating in the study were in the age group of 30-39 years, 52.2% were female, 93.2% had no other children with chronic diseases, 20.3% were diagnosed with asthma, and the duration of the diagnosis was between 1 and 4 years in 44.4%. The participants scored 130.64 ± 25.73 points in the Family Resilience Scale and 36.16 ± 7.78 points in the overall Burnout Inventory. CONCLUSION: It was determined that parents' resilience was high and their burnout was moderate. Burnout decreases as resilience increases in parents of children with chronic diseases. PRACTICE IMPLICATIONS: To strengthen family resilience and reduce parental burnout, nurses should support and provide holistic care to parents with chronically ill children.


Asunto(s)
Agotamiento Profesional , Resiliencia Psicológica , Niño , Humanos , Femenino , Adulto , Masculino , Salud de la Familia , Estudios Transversales , Padres , Agotamiento Profesional/epidemiología , Enfermedad Crónica
17.
J Pediatr Nurs ; 75: e65-e74, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38246818

RESUMEN

AIM: This study aims to assess how a structured supportive approach applied to the parents of children living with cerebral palsy according to how the Theory of Comfort affects the child's comfort, quality of life, and parent's self-efficacy. DESIGN: A single-blind, randomised, controlled experimental trial. METHODS: The study was conducted with parents of children with cerebral palsy aged between 8 and 16 years who presented to the rehabilitation centers between October 2021 and November 2022. The sample consisted of a total of 73 parents from the experimental (n = 35) and control (n = 38) groups. While a care programme based on the Theory of Comfort was applied to the intervention group, the practises included in the routines of the centres were applied to the control group. The researcher collected data using the Comfort Behaviours Checklist (CBCL), the Parent Form of the Quality-of-Life Scale for Children (QoLC), and the Self-Efficacy Scale. RESULTS: The children in the intervention group had significantly higher CBCL and QoLC mean scores and the parents in the intervention group had significantly higher self-efficacy mean scores of parents when compared to the control group. CONCLUSIONS: The structured supportive approach based on the Theory of Comfort enhanced children's comfort and quality of life and increased parents' self-efficacy. RELEVANCE TO CLINICAL PRACTICE: It is recommended to implement the structured supportive approach applied according to the Theory of Comfort with the parents of children with cerebral palsy in special training and rehabilitation centres. Paediatric nurses can perform preventive and rehabilitative nursing management with a holistic approach to meet the needs of children with cerebral palsy and their families.


Asunto(s)
Parálisis Cerebral , Calidad de Vida , Niño , Humanos , Adolescente , Método Simple Ciego , Padres , Autoeficacia
18.
Epilepsy Behav ; 152: 109658, 2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-38277851

RESUMEN

OBJECTIVE: To explore the experiences and preferences of parents/guardians of adolescents and young adults (AYA) of childbearing potential with co-occurring epilepsy and intellectual disability (ID) regarding counseling by neurologists on sexual and reproductive health (SRH) topics such as pregnancy, contraception, menstruation, and folic acid supplementation. METHODS: We conducted semi-structured interviews with parents/guardians of AYAs (12-28 years old) of childbearing potential with co-occurring epilepsy and ID, recruited from a tertiary-care children's hospital. We confirmed the diagnoses of epilepsy and ID with the patient's neurologist and parent/guardian. All degrees of ID (e.g. mild/moderate/severe) were eligible. We audio-recorded and transcribed interviews. Two coders performed qualitative thematic analysis. RESULTS: Twenty-five parents/guardians completed interviews. Themes included: (1) Parents/guardians believe their child to be immune from sexual abuse due to their supervision, yet desire counseling about abuse recognition and prevention, which they also report not occurring (2) A common opinion was that counseling on menstruation was more relevant to their child's life than counseling about pregnancy-related topics (3) Parents/guardians reported a lack of counseling on pregnancy-related topics such as folic acid supplementation and teratogenesis and generally also reported some degree of interest in hearing about these topics from neurologists (4) Parents/guardians also reported a lack of counseling on drug interactions between contraception and ASMs, and were highly interested in learning more about this topic (5) Parents/guardians want neurologists to initiate annual comprehensive SRH counseling at puberty about most topics, but report that they often initiate SRH discussions themselves. CONCLUSION: Parents/guardians of AYAs with epilepsy and ID prefer more frequent, neurologist-initiated, comprehensive conversations surrounding SRH particularly emphasizing menstruation and sexual abuse recognition/prevention. Findings may inform professional and patient education and health systems interventions including development of discussion guides and/or decision aides to improve SRH care for AYAs with epilepsy and ID.


Asunto(s)
Epilepsia , Discapacidad Intelectual , Embarazo , Femenino , Adulto Joven , Humanos , Adolescente , Niño , Adulto , Salud Reproductiva/educación , Discapacidad Intelectual/complicaciones , Conducta Sexual/psicología , Consejo , Epilepsia/complicaciones , Padres/psicología , Ácido Fólico
19.
J Pediatr Gastroenterol Nutr ; 78(3): 573-582, 2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-38284644

RESUMEN

OBJECTIVES: Complementary and alternative medicine (CAM) has gained increasing attention as a supportive treatment for chronic diseases such as epilepsy, migraine, autism, and cancer in children. This study aimed to determine the frequency, motivation, and outcomes of CAM in children with functional constipation. METHODS: From January 2018 till September 2019, parents of patients (0-18 years) who were treated for functional constipation (ROME IV-criteria) at our colorectal center were asked to complete a questionnaire on the utilization of CAM. Demographic data and clinical assessments were documented and analyzed for patients with and without CAM treatment. RESULTS: A total of 115 patients were included (mean age: 5.1 years; 49% males), of whom 29 (25%) used CAM as an alternative (4/29,14%) or in addition to conventional therapy (CT), including osteopathy (48%), homeopathy (45%), and natural/herbal remedies (17%). The main reason parents reported for the use of CAM was the urge to leave no treatment option unattempted (76%). Multivariate analysis also identified persistent constipation under CT (72%), adverse effects of CT (24%), and parental use of CAM themselves (83%) as independent variables associated with CAM use. Parents reported positive changes in stool frequency (38%) and fecal incontinence (21%) with CAM. The vast majority (93%) plan to use CAM in the future, and even non-CAM users showed high interest (60%). CONCLUSION: One in four children with functional constipation receives CAM. Significant improvement in stool frequency and continence is missing in the majority. However, parental interest in CAM remains high. Physicians should be aware of CAM when counseling families for functional constipation in children.


Asunto(s)
Terapias Complementarias , Epilepsia , Niño , Masculino , Humanos , Preescolar , Femenino , Padres/psicología , Encuestas y Cuestionarios , Estreñimiento/terapia
20.
Prax Kinderpsychol Kinderpsychiatr ; 73(1): 85-109, 2024 Jan.
Artículo en Alemán | MEDLINE | ID: mdl-38275232

RESUMEN

The term Medical Child Abuse (MCA) describes a form of child abuse in which the medical system is "abused" by carrying out unnecessary medical procedures on a child. This abuse of the medical system occurs through misrepresentation, non-disclosure, fabrication, misinterpretation or active causation of symptoms by a parent. In this article, the construct ofmedical child abuse is defined and predisposing and motivational factors are examined. It also provides an overview of terms that are used synonymously or comparably in the literature and discusses the connection between MCA and Munchausen-by-proxy-syndrome.The core of the article is the presentation of an internal guideline, which was created by the interdisciplinary working group on MCA of the Clinics for Paediatric and Adolescent Medicine, the Department of Child and Adolescent Psychiatry, Psychosomatic Medicine and Psychotherapy, the Child Protection Outpatient Clinic and the Social Services at the Charité. It also outlines possible interventions.


Asunto(s)
Maltrato a los Niños , Síndrome de Munchausen Causado por Tercero , Adolescente , Niño , Humanos , Síndrome de Munchausen Causado por Tercero/diagnóstico , Síndrome de Munchausen Causado por Tercero/prevención & control , Síndrome de Munchausen Causado por Tercero/psicología , Maltrato a los Niños/psicología , Padres , Motivación , Psicoterapia
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