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1.
BMC Public Health ; 24(1): 775, 2024 Mar 12.
Article in English | MEDLINE | ID: mdl-38475730

ABSTRACT

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.


Subject(s)
Adolescent Development , Birth Cohort , Adolescent , Child , Female , Humans , Male , Pregnancy , Cognition , Cohort Studies , Mothers/psychology , Parents/psychology , Prospective Studies , Adult , Young Adult , Clinical Trials as Topic
2.
Rev Bras Enferm ; 77(1): e20220811, 2024.
Article in English, Portuguese | MEDLINE | ID: mdl-38511784

ABSTRACT

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.


Subject(s)
Nursing Care , Parents , Female , Pregnancy , Humans , Parents/psychology , Grief , Communication , Fetal Death
3.
Res Dev Disabil ; 147: 104688, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38431998

ABSTRACT

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.


Subject(s)
Autism Spectrum Disorder , Child, Preschool , Humans , Autism Spectrum Disorder/psychology , Longitudinal Studies , Prospective Studies , Emotions , Parents/psychology
4.
Sleep Med ; 117: 169-176, 2024 May.
Article in English | MEDLINE | ID: mdl-38554532

ABSTRACT

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.


Subject(s)
Attention Deficit Disorder with Hyperactivity , Sleep Wake Disorders , Child , Humans , Sleep Hygiene , Attention Deficit Disorder with Hyperactivity/complications , Attention Deficit Disorder with Hyperactivity/therapy , Attention Deficit Disorder with Hyperactivity/psychology , Autogenic Training , Parents/psychology , Sleep Wake Disorders/therapy
5.
BMC Palliat Care ; 23(1): 66, 2024 Mar 08.
Article in English | MEDLINE | ID: mdl-38454420

ABSTRACT

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.


Subject(s)
Parents , Quality of Health Care , Child , Humans , Parents/psychology , Caregivers , Health Personnel , Consensus , Surveys and Questionnaires
6.
Matern Child Health J ; 28(6): 1010-1019, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38353888

ABSTRACT

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.


Subject(s)
Health Services Needs and Demand , Parenting , Social Support , Stress, Psychological , Humans , Female , Male , Child , Stress, Psychological/psychology , Child, Preschool , Parenting/psychology , Adolescent , United States , Infant , Adult , Parents/psychology , Adaptation, Psychological , Infant, Newborn
7.
J Pediatr Nurs ; 76: e69-e76, 2024.
Article in English | MEDLINE | ID: mdl-38307760

ABSTRACT

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.


Subject(s)
Neoplasms , Parents , Humans , Ethiopia , Male , Female , Cross-Sectional Studies , Child , Neoplasms/therapy , Neoplasms/psychology , Neoplasms/nursing , Parents/psychology , Adult , Tertiary Care Centers , Patient-Centered Care , Child, Preschool
8.
J Pediatr Nurs ; 76: 167-175, 2024.
Article in English | MEDLINE | ID: mdl-38412708

ABSTRACT

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.


Subject(s)
Caregivers , Humans , Child , Caregivers/psychology , United States , Parents/psychology , Home Care Services , Chronic Disease/therapy , Female , Male , Caregiver Burden/psychology
9.
J Nurs Scholarsh ; 56(3): 357-370, 2024 May.
Article in English | MEDLINE | ID: mdl-38168092

ABSTRACT

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.


Subject(s)
Mental Disorders , Quality of Life , Humans , Adult , Male , Female , Middle Aged , Quality of Life/psychology , Mental Disorders/psychology , Qualitative Research , Parents/psychology , Adaptation, Psychological , Young Adult , Child of Impaired Parents/psychology , Resilience, Psychological
10.
J Pediatr Gastroenterol Nutr ; 78(3): 573-582, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38284644

ABSTRACT

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.


Subject(s)
Complementary Therapies , Epilepsy , Child , Male , Humans , Child, Preschool , Female , Parents/psychology , Surveys and Questionnaires , Constipation/therapy
11.
Epilepsy Behav ; 152: 109658, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38277851

ABSTRACT

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.


Subject(s)
Epilepsy , Intellectual Disability , Pregnancy , Female , Young Adult , Humans , Adolescent , Child , Adult , Reproductive Health/education , Intellectual Disability/complications , Sexual Behavior/psychology , Counseling , Epilepsy/complications , Parents/psychology , Folic Acid
12.
Midwifery ; 130: 103913, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38241799

ABSTRACT

BACKGROUND: Student midwives frequently encounter bereaved parents in clinical practice; however, the experience of caring for bereaved parents can be a significant source of traumatic stress. Although the use of simulation to teach bereavement care is considered a powerful experiential form of learning, evidence for its effectiveness as a transformative learning strategy is limited. AIM: To explore student midwives' lived experience of caring for bereaved parents experiencing perinatal loss using high-fidelity simulation. DESIGN: Students midwives participated in an actor-based bereavement simulated scenario. Data was collected using semi-structured interviews. Interpretative Phenomenological Analysis was conducted to gain a deep understanding of the meaning of the experience. Mezirow's Transformative Learning Theory was applied as an analytical framework to illustrate how the student midwives made sense of and learned from the experience of caring for bereaved parents experiencing perinatal loss. SETTING: One BSc (Hons), 156-week undergraduate midwifery programme within a university in the Northwest of England. PARTICIPANTS: A purposeful sample of nine first-and second-year student midwives volunteered to participate in the study. FINDINGS: One of the superordinate themes that emerged from the analysis (1) 'trying to console and making things easier' and the related subthemes (1a)'what words can I say', (1b)'my instinct was to console the mum', (1c)'left to sort of pick up the pieces' captured the deep sense of powerlessness and the professional dilemmas experienced as students struggled to emotionally console and communicate the right words to say to the grieving parents. CONCLUSION: The study highlights the vital role of simulation as a defined model of bereavement education that equips students with the necessary knowledge, skills, and confidence to provide compassionate care to bereaved parents experiencing perinatal loss. IMPLICATIONS FOR PRACTICE: The emotional toll of caring for bereaved parents is significant, and higher education institutions should adopt experiential forms of learning using actor-based simulation scenarios to emotionally prepare students to care holistically for parents affected by perinatal loss.


Subject(s)
Bereavement , Midwifery , Students, Nursing , Pregnancy , Female , Humans , Midwifery/education , Grief , Parents/psychology , Students, Nursing/psychology , Qualitative Research
13.
Child Care Health Dev ; 50(1): e13205, 2024 01.
Article in English | MEDLINE | ID: mdl-38083819

ABSTRACT

BACKGROUND: The F-words Life Wheel (FWLW) approaches child development by hybridizing a holistic model in the F-words for Child Development, and a coaching model in Occupational Performance Coaching, along with a life-flow approach in the Kawa model. We report the impact of the FWLW as experienced by families. METHODS: This was a qualitative interview study of parents of children with developmental needs and experts in child development using reflexive thematic analysis. RESULTS: From 13 interviews, we developed three themes: 1) overwhelming, 2) power rebalance and 3) connectedness. The overwhelming theme addresses how life with developmental needs is challenging, engaging with the health and disability system is difficult and the focus on deficits can lead to a sense of being overwhelmed. The power rebalance theme addresses the transition from professionals calling the shots to giving agency to the child and family. Holistic goal setting empowers parents and children to direct and prioritize therapy, and helps shift from a deficit-focused to a 'can-do' attitude. The connectedness theme addresses the linkages between psychological health, physical health, the extended family and the planet as a whole. CONCLUSIONS: The FWLW approach appears to be empowering and motivating for children and families.


Subject(s)
Child Development , Mentoring , Child , Humans , Parents/psychology , Qualitative Research , Professional-Family Relations
14.
J Adv Nurs ; 80(2): 550-565, 2024 Feb.
Article in English | MEDLINE | ID: mdl-37537856

ABSTRACT

AIMS: To explore how long-term and late effects of paediatric brain tumours influence the everyday lives of survivors at various ages and their parents. DESIGN: A qualitative interview study using reflexive thematic analysis. METHODS: We conducted individual interviews and focus groups with 14 paediatric brain tumour survivors aged 9-52 years and 16 parents, which were audiorecorded and transcribed. We inductively analyzed the data using Braun and Clarke's reflexive thematic analysis. Inductively derived themes were then mapped onto the components of the International Classification of Functioning, Disability and Health framework to examine the survivors' everyday functioning. RESULTS: All survivors experienced ongoing long-term and late effects but with considerable variations in how these restricted the survivors' functioning and thus their ability to participate in everyday life activities (e.g. social, educational and work activities). All survivors expressed an explicit focus on and use of different strategies to manage their perceived functional limitations and participation restrictions. Many survivors expressed discrepancies between their own goals, expectations and actual abilities post-cancer; making them very aware of their limitations. In addition, many survivors and parents experienced ongoing concerns about the survivors' future, including the risk of late effects, relapse or other complications. CONCLUSION: A wide range of long-term and late effects continue to affect the survivors and their parents' functioning and everyday lives. Their ongoing needs emphasize the importance of comprehensive, life-long follow-up care, as recommended. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: The complex challenges across the biopsychosocial realms faced by the survivors supports the call for multidisciplinary survivorship care. Nurses are well positioned to lead such care, as they are trained to provide holistic care and thereby support survivors' functioning and activity participation in everyday life. REPORTING METHOD: We used the COREQ guidelines when reporting the study. PATIENT OR PUBLIC CONTRIBUTION: Two user representatives (one young adult PBT survivor and one mother of a PBT survivor) ensured the relevance and quality of the semi-structured interview guides prior to the interviews with the survivors and parents. The guides were sent to the user representatives by mail, and they provided their written feedback by mail to the first author.


Subject(s)
Brain Neoplasms , Quality of Life , Child , Young Adult , Humans , Quality of Life/psychology , Survivors/psychology , Parents/psychology , Qualitative Research
15.
Child Care Health Dev ; 50(1): e13158, 2024 01.
Article in English | MEDLINE | ID: mdl-37582547

ABSTRACT

BACKGROUND: Almost half of all children and young people with a disability or developmental difficulty (DDD) have complex disability and are likely to require multidisciplinary care. Care coordination (CC) aims to provide a single point of contact and a coordinated service, thereby improving care experiences, meeting unmet needs and empowering families. The impact of CC for children with DDD was evaluated. METHOD: Between May and August 2020, an in-depth evaluation of CC in Gwent, South Wales was conducted. Of 284 families who accessed CC, 38 were approached, as well as 177 health and social care professionals based at Serennu, Nevill Hall and Caerphilly Children's Centres. Nine families and 14 professionals completed semi-structured interviews. Interview transcripts were analysed using thematic analysis. RESULTS: This evaluation found perceived improvements in families' abilities to navigate, organize and understand care and increased parental engagement. Professionals observed fewer missed appointments, and both professionals and families described CC as a source of holistic support, including practical advice regarding housing, finances and emotional support. Professionals commented on CC easing pressure on their service. Potential limitations included restricted staff capacity and the role not being defined clearly for families and professionals. CONCLUSIONS: At a time of increased stress for families of children with DDD, and scarce resources to support them, care coordinators play a vital role in assisting families to engage with health services, while feeling supported and empowered. CC reduces the burden on professionals, while enhancing relationships with families.


Subject(s)
Disabled Persons , Child , Humans , Adolescent , Parents/psychology , Social Support , Health Services
16.
Child Care Health Dev ; 50(1): e13170, 2024 01.
Article in English | MEDLINE | ID: mdl-37648678

ABSTRACT

During mirror meetings, professionals were confronted with the experiences of young people (YP) with inflammatory bowel disease to encourage them to improve their transitional care arrangements. The mirror meetings were held under guidance of an independent moderator. YP conversed about their transition experiences, while health care providers listened without interfering. Meetings were audio-recorded and summarized. Qualitative thematic analysis was conducted. Thirty-two YP participated in six mirror meetings with 26 professionals from paediatric and adult care. Professionals received concrete suggestions for improving their transitional care arrangements. These were about holistic care, tailored to individual needs and preferences, attention for mental health and the role of parents and peers. Advice given by YP matched transitional care guidelines' recommendations. Mirror meetings are a powerful tool to enhance professionals' awareness of YP's needs.


Subject(s)
Inflammatory Bowel Diseases , Mental Health , Adult , Humans , Child , Adolescent , Qualitative Research , Parents/psychology
17.
Phys Occup Ther Pediatr ; 44(3): 316-335, 2024.
Article in English | MEDLINE | ID: mdl-37867378

ABSTRACT

AIMS: Extremely premature birth puts infants at high risk for developmental delay and results in parent anxiety and depression. The primary objective of this study was to characterize feasibility and acceptability of a therapist-led, parent-administered therapy and massage program designed to support parent mental health and infant development. METHODS: A single cohort of 25 dyads - parents (24 mothers, 1 father) and extremely preterm (<28 wk gestation) infants - participated in the intervention. During hospitalization, parents attended weekly hands-on education sessions with a primary therapist. Parents received bi-weekly developmental support emails for 12 months post-discharge and were scheduled for 2 outpatient follow up visits. We collected measures of parent anxiety, depression, and competence at baseline, hospital discharge, and <4 and 12 months post-discharge. RESULTS: All feasibility targets were met or exceeded at baseline and discharge (≥70%). Dyads participated in an average of 11 therapy sessions (range, 5-20) during hospitalization. Lower rates of data collection adherence were observed over successive follow ups (range, 40-76%). Parent-rated feasibility and acceptability scores were high at all time points. CONCLUSIONS: Results support parent-rated feasibility and acceptability of the TEMPO intervention for extremely preterm infants and their parents in the Neonatal Intensive Care Unit.


Subject(s)
Infant, Premature , Occupational Therapy , Infant , Female , Child , Infant, Newborn , Humans , Feasibility Studies , Mental Health , Child Development , Aftercare , Patient Discharge , Parents/psychology , Intensive Care Units, Neonatal
18.
J Fam Psychol ; 38(2): 223-235, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38032653

ABSTRACT

A large body of evidence demonstrates that childhood interpersonal trauma is associated with poorer parental and couple outcomes following the birth of a new child. As a unique component of couple functioning, parenting alliance is key during this transition period and is associated with long-term parental and child well-being. However, parenting alliance remains understudied in relation to childhood trauma, and little is known regarding the underlying mechanisms of this relationship among couples. Given its documented role in the intimate relationships of childhood interpersonal trauma-exposed individuals, dispositional mindfulness could be considered as a potential explanatory mechanism. Using a dyadic approach, this study examined the role of dispositional mindfulness, and its different facets, in the association between cumulative childhood interpersonal trauma (CCIT) and parenting alliance. A randomly selected community sample of 421 parental couples with infants completed online questionnaires. For both mothers and fathers, CCIT was associated with a more negative perception of parenting alliance through lower dispositional mindfulness, specifically through lower scores on the nonjudgment and describing facets. Moreover, results revealed dyadic indirect effects between parents' CCIT and their partner's parenting alliance through both partners' dispositional mindfulness. This study provides insight on how parents of an infant may influence each other's perceived parenting alliance through their dispositional mindfulness. Results also highlight mindfulness as a relevant mechanism for CCIT survivors who struggle to establish or maintain a positive parenting alliance, as well as the need to involve both parents in research and intervention. (PsycInfo Database Record (c) 2024 APA, all rights reserved).


Subject(s)
Adverse Childhood Experiences , Mindfulness , Female , Child , Infant , Humans , Parenting/psychology , Mindfulness/methods , Parents/psychology , Mothers/psychology , Postpartum Period
19.
J Fam Psychol ; 38(1): 59-70, 2024 Feb.
Article in English | MEDLINE | ID: mdl-38032655

ABSTRACT

Adolescence is a unique developmental period marked with significant changes and challenges. As such, maintaining optimal psychological adjustment is crucial for young people, especially during the COVID-19 pandemic when their adjustment became more challenging. Self-control is a vital ability assisting individuals to navigate difficulties and stay well-adjusted during turbulent times. While the associations between adolescent self-control and adjustment have been well-documented, parental self-control has been considered to play a more fundamental role in adolescent adjustment. However, this consideration has received scant research. Drawing on the intergenerational transmission model of self-regulation, we examined an understudied yet plausible idea that parental self-control facilitates adolescent adjustment through parents' lower levels of perceived stress/better mindful parenting and adolescents' improved self-control. A two-wave survey study, spanning 1 year apart, was conducted among 426 Chinese adolescents (Mage = 11.6 years, 53.5% boys) and their parents. Parents rated their self-control, perceived stress, and mindful parenting at T1, while adolescents rated their self-control and adjustment (i.e., psychological difficulties and life satisfaction) at T1 and T2. The results of chain mediation model showed that after controlling for demographic covariates and baseline levels of adolescent self-control and adjustment, T1 paternal self-control facilitated T2 adolescent adjustment through fathers' lower levels of perceived stress and adolescents' improved self-control. By contrast, T1 maternal self-control facilitated T2 adolescent adjustment through mothers' better mindful parenting and adolescents' improved self-control. These findings advance our understanding of how self-control is transmitted from parents to offspring and clarify the processes of how parental self-control facilitates adolescent adjustment. (PsycInfo Database Record (c) 2024 APA, all rights reserved).


Subject(s)
Adolescent Behavior , Self-Control , Male , Female , Humans , Adolescent , Child , Parenting/psychology , Emotional Adjustment , Pandemics , Adolescent Behavior/psychology , Parents/psychology , Parent-Child Relations , Mothers/psychology , Stress, Psychological/etiology
20.
J Hosp Palliat Nurs ; 26(1): 14-20, 2024 Feb 01.
Article in English | MEDLINE | ID: mdl-38134344

ABSTRACT

This scoping review aimed to explore the characteristics of neonatal palliative care in the neonatal intensive care unit, including the features, contents, and experiences of infants, parents, and nurses during palliative care. Five databases (PubMed, Cochrane, CINAHL, Research Information Sharing Service, and Korean Studies Information Service System) were searched to identify relevant articles published between 2011 and 2020. From the systematic search and review process, 13 studies that met the eligibility criteria were selected for the analysis. From the literature review, 2 key principles were found to facilitate neonatal palliative care: family-centered care and integrative care in the neonatal intensive care unit. In addition, the themes found in this review included (1) providing comfortable care to dying infants with respect to infants and offering parents choices, (2) therapeutic communication, (3) support with respect, and (4) bereavement care for parents of dying infants in the neonatal intensive care unit. Caregivers require effective communication, manpower support, emotional support, educational programs, and well-defined protocols. The evidence mapped and synthesized in this review indicates the need to facilitate the provision of palliative care in the neonatal intensive care unit in line with the unique needs of infants, parents, and nurses.


Subject(s)
Hospice Care , Nursing Care , Humans , Infant , Infant, Newborn , Intensive Care Units, Neonatal , Palliative Care/psychology , Parents/psychology
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