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1.
Cien Saude Colet ; 29(7): e02602024, 2024 Jul.
Article in Portuguese, English | MEDLINE | ID: mdl-38958311

ABSTRACT

This article aims to investigate the implications of grief among family members of COVID-19 victims; verify the prevalence of prolonged grief symptoms; and identify family members' expectations regarding end-of-life care for their loved ones affected by COVID-19. Descriptive, cross-sectional research, with a quantitative-qualitative approach. Data collection was performed using an online questionnaire, guided by the PG-13 instrument. Descriptive and inferential statistics were applied. The results were presented descriptively and with the aid of tables. The study sample included 142 family members, mostly female, who presented emotional, physical, social, and financial implications as a result of grief. A prevalence of prolonged grief symptoms was observed in 11.4% of the mourners with more than six months and 29.6% of those with less than six months. Three thematic categories were identified: transparency in communicating the health situation, access to moments of farewell, and promotion of comfort in care actions. The symptoms of Prolonged Grief Disorder have a significant association with the degree of kinship. In final care, family members' expectations were classified as: permission for a dignified farewell, effective communication, and promotion of comfort and care.


O objetivo deste artigo é investigar implicações do luto em familiares de vítimas da COVID-19; verificar a prevalência de sintomas de luto prolongado; identificar expectativas dos familiares acerca do cuidado em fim de vida de seus entes acometidos por COVID-19. Pesquisa descritiva, transversal, com abordagem quanti-qualitativa. Coleta de dados mediante questionário on-line, norteado pelo instrumento PG-13. Aplicou-se estatística descritiva e inferencial. Os resultados foram apresentados de forma descritiva e com auxílio de tabelas. Amostra de 142 familiares, maioria do sexo feminino, que apresentaram implicações emocionais, físicas, sociais e financeiras em decorrência do luto. Houve prevalência de sintomas de luto prolongado em 11,4% dos enlutados com mais de seis meses e 29.6% dos que tinham menos de seis meses. Foram identificadas três categorias temáticas: transparência na comunicação da situação de saúde, acesso a momentos de despedida e promoção de conforto nas ações de cuidado. Os sintomas de Transtorno de Luto Prolongado possuem associação significativa com o grau de parentesco. Nos cuidados finais as expectativas dos familiares foram classificadas em: permissão para despedida digna, comunicação efetiva e promoção de conforto e cuidado.


Subject(s)
COVID-19 , Family , Grief , Terminal Care , Humans , COVID-19/epidemiology , COVID-19/psychology , Female , Male , Cross-Sectional Studies , Terminal Care/psychology , Family/psychology , Middle Aged , Adult , Surveys and Questionnaires , Aged , Prevalence , Young Adult
2.
Cien Saude Colet ; 29(7): e03132024, 2024 Jul.
Article in Portuguese, English | MEDLINE | ID: mdl-38958317

ABSTRACT

Neglect is one of the most frequently reported forms of violence against children and adolescents, although it has rarely been explored in national studies. In this light, the present study aimed to analyze the personal social network of families involved in negligence against children and adolescents. This work takes a qualitative approach, anchored in the Paradigm of Complexity, conducted with twenty families involved in negligence against children and adolescents in a municipality in the countryside of the state of São Paulo, Brazil. Data collection took place through minimal maps of the personal social network and semi-structured interviews in January 2021. The networks were limited, with little to no interaction among the different services and sectors, and were predominantly homogeneous. Because they have many weakened ties, they are relatively unsupportive, pointing out difficulties in access to work, education, and health. Due to the characteristics of the network, the complexity of the phenomenon of neglect was identified, in which elements condition and perpetuate experiences of absence and fragility. Interprofessional and intersectoral views and actions are requested and recommended.


A negligência constitui uma das violências contra crianças e adolescentes mais notificadas, entretanto ainda pouco explorada em estudos nacionais. O objetivo deste estudo foi analisar a rede pessoal social de famílias envolvidas na negligência contra crianças e adolescentes. Estudo qualitativo, ancorado no paradigma da complexidade, realizado junto a 20 familiares envolvidos na negligência contra crianças e adolescentes em município do interior de São Paulo, Brasil. A coleta de dados se deu por mapas mínimos da rede pessoal social e entrevistas semiestruturadas em janeiro de 2021. As redes se apresentaram reduzidas, com pouca ou nenhuma articulação entre os diferentes serviços e setores e predominantemente homogêneas. Por terem muitos vínculos fragilizados, mostrou-se pouco sustentadora, apontando dificuldades no acesso a trabalho, educação e saúde. Pelas características da rede, identificou-se a complexidade do fenômeno da negligência, em que elementos condicionam e perpetuam vivências de ausências e fragilidades. Olhares e ações interprofissionais e intersetoriais são pleiteadas e recomendadas.


Subject(s)
Child Abuse , Interviews as Topic , Humans , Brazil , Child , Adolescent , Female , Male , Family/psychology , Adult , Social Support , Social Networking
3.
Rev Esc Enferm USP ; 58: e20230355, 2024.
Article in English, Portuguese | MEDLINE | ID: mdl-38949511

ABSTRACT

OBJECTIVE: To understand the experience of nurses working in pediatric units in the face of innovations and changes in the process of caring for children and families during the COVID-19 pandemic. Also, the objective is to understand the typical experience of nurses in this care. METHOD: Qualitative research, which involved the participation of 16 nurses from pediatric units of a public teaching hospital. The data were analyzed according to the theoretical-methodological framework of Alfred Schütz's social phenomenology. RESULTS: The participants' reports generated the categories: the challenge of experiencing changes amid fear, the team's adaptation to innovations and changes caused by the COVID-19 pandemic and the expectation for care and the work process. CONCLUSION: The understanding of the nurses' experience highlighted changes, team adaptations and expectations for the care of children and families, which, although permeated by learning, were experienced by ethical dilemmas and moral suffering for these professionals.


Subject(s)
COVID-19 , Pediatric Nursing , COVID-19/epidemiology , Humans , Child , Qualitative Research , Female , Adult , Male , Pandemics , Family/psychology , Nursing Staff, Hospital/psychology
4.
JAMA Netw Open ; 7(7): e2420388, 2024 Jul 01.
Article in English | MEDLINE | ID: mdl-38949808

ABSTRACT

Importance: Improving end-of-life care in the intensive care unit (ICU) is a priority, but clinically modifiable factors of quality of dying and death (QODD) are seldom identified. Objectives: To comprehensively identify factors associated with QODD classes of dying ICU patients, emphasizing clinically modifiable factors based on the integrative framework of factors associated with for bereavement outcomes. Design, Setting, and Participants: This observational cohort study was conducted at medical ICUs of 2 Taiwanese medical centers from January 2018 to March 2020 with follow-up through December 2022. Eligible participants included primary family surrogates responsible for decision making for critically ill ICU patients at high risk of death (Acute Physiology and Chronic Health Evaluation II score >20) but who survived more than 3 days after ICU admission. Data analysis was conducted from July to September 2023. Main Outcomes and Measures: QODD was measured by the 23-item ICU-QODD questionnaire. Factors associated with patient membership in 4 previously determined QODD classes (high, moderate, poor to uncertain, and worst) were examined using a 3-step approach for latent class modeling with the high QODD class as the reference category. Results: A total of 309 family surrogates (mean [SD] age, 49.83 [12.55] years; 184 women [59.5%] and 125 men [40.5%]) were included in the study. Of all surrogates, 91 (29.4%) were the patients' spouse and 66 (53.7%) were the patients' adult child. Patient demographics were not associated with QODD class. Two family demographics (age and gender), relationship with the patient (spousal or adult-child), and length of ICU stay were associated with QODD classes. Patients of surrogates perceiving greater social support were less likely to be in the poor to uncertain (adjusted odds ratio [aOR], 0.89; 95% CI, 0.83-0.94) and worst (aOR, 0.92; 95% CI, 0.87-0.96) QODD classes. Family meetings were associated with the poor to uncertain QODD class (aOR, 8.61; 95% CI, 2.49-29.74) and worst QODD class (aOR, 7.28; 95% CI, 1.37-38.71). Death with cardiopulmonary resuscitation was associated with the worst QODD class (aOR, 7.51; 95% CI, 1.12-50.25). Family presence at patient death was uniformly negatively associated with the moderate QODD class (aOR, 0.16; 95% CI, 0.05-0.54), poor to uncertain QODD class (aOR, 0.21; 95% CI, 0.05-0.82), and worst QODD class (aOR, 0.08; 95% CI, 0.02-0.38). Higher family satisfaction with ICU care was negatively associated with the poor to uncertain QODD class (aOR, 0.93; 95% CI, 0.87-0.98) and worst QODD class (aOR, 0.86; 95% CI, 0.81-0.92). Conclusions and Relevance: In this cohort study of critically ill patients and their family surrogates, modifiable end-of-life ICU-care characteristics played a more significant role in associations with patient QODD class than did immutable family demographics, preexisting family health conditions, patient demographics, and patient clinical characteristics, thereby illuminating actionable opportunities to improve end-of-life ICU care.


Subject(s)
Critical Illness , Intensive Care Units , Terminal Care , Humans , Male , Female , Critical Illness/mortality , Critical Illness/psychology , Middle Aged , Aged , Terminal Care/psychology , Family/psychology , Taiwan , Cohort Studies , Surveys and Questionnaires , Adult , Bereavement
6.
Sci Rep ; 14(1): 15073, 2024 07 02.
Article in English | MEDLINE | ID: mdl-38956144

ABSTRACT

The objective of this cross-sectional study was to examine the extent of sleep quality among individuals undergoing maintenance hemodialysis (MHD) and to scrutinize whether hope and family function serve as mediators in the association between anxiety and sleep quality in this cohort. A convenience sampling method was used to recruit 227 patients receiving maintenance hemodialysis from two tertiary hospitals in Wuhan. Participants completed several self-report questionnaires, including the Sociodemographic questionnaire, Hospital Anxiety and Depression Scale, Athens Insomnia Scale, Herth Hope Index, and Family APGAR Index. As per the findings of the chain mediation analysis, it was observed that the sleep quality scores were directly predicted by anxiety. Moreover, anxiety positively predicted sleep quality scores through hope and family function as mediators. The observed types of mediation were partial mediation. The total indirect effect value was 0.354, indicating the mediating effect of hope and family function, while the total effect value was 0.481, representing the overall effect of anxiety on sleep quality. The total effect size was 73.60% (0.354/0.481), indicating that the mediation accounted for a significant portion of the relationship. This study established the chain mediating effect of hope and family function between anxiety and sleep quality in patients receiving maintenance hemodialysis. The findings highlight the importance of addressing anxiety and promoting hope and family function to improve sleep quality in this population. The findings suggest that healthcare professionals should be attentive to the anxiety levels of these patients and implement targeted interventions to help alleviate anxiety, enhance hope, and improve family functioning, with the ultimate goal of improving sleep quality in this population.


Subject(s)
Anxiety , Hope , Renal Dialysis , Sleep Quality , Humans , Renal Dialysis/adverse effects , Male , Female , Middle Aged , Anxiety/psychology , Cross-Sectional Studies , Adult , Aged , Surveys and Questionnaires , Family/psychology , Self Report
7.
Int J Older People Nurs ; 19(4): e12626, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38970350

ABSTRACT

INTRODUCTION: When older persons with dementia are admitted to hospital, they often feel disoriented and confused and their cognitive impairment may worsen, purely due to the sudden change in their environment. As such hospital design is recognised as an important aspect in the care and well-being of older persons with dementia. As the number of persons with dementia is increasing, the experience of admission to a hospital with, for example, single rooms is more relevant than ever. AIM AND METHODS: This scoping review aimed to identify, explore and conceptually map the literature reporting on what older people with dementia and their families experienced during admission to a hospital with single room accommodation. We followed the Joanna Briggs Institute recommendations for undertaking a scoping review. In addition, we used the Preferred Reporting Items for Systematic reviews (PRISMA-ScR) Checklist, which assisted the development and reporting of this scoping review. RESULTS: We included 10 sources within a time frame of 23 years (1998-2021). The sources originate from Europe, Australia and Canada. We identified three conceptual maps: Safety and security, Privacy and dignity and Sensorial stimulation. Our review demonstrates that the themes of the three conceptual maps are experienced as mutually interdependent for the older persons with dementia and their families. CONCLUSION: We conclude that it is not merely the single room design that determines what the older persons with dementia and their families experience as important; the exposure to sensorial stimulation and the presence of well-trained staff taking a dignified patient-centred approach are also crucial for their experience of high-quality nursing care.


Subject(s)
Dementia , Humans , Dementia/nursing , Aged , Family/psychology , Patients' Rooms , Hospital Design and Construction , Hospitalization , Patient Admission
8.
Int J Public Health ; 69: 1607410, 2024.
Article in English | MEDLINE | ID: mdl-38978832

ABSTRACT

Objectives: Exploring the experiences, perceptions and meanings of family members and close friends of Israeli individuals who sought aid-in-dying outside Israel. Methods: Using the phenomenological-interpretive approach, a qualitative research design was employed, based on ten in-depth semi-structured interviews with Israelis who had provided support for a relative who embarked on suicide tourism. Results: The following five themes emerged from interviews: (1) facilitators for supporting an individual requesting suicide tourism; (2) choosing death and actively making the decision to die; (3) the meaning of traveling to die; (4) offering support throughout the process; and (5) facilitating procedures after death. Conclusion: The participants spoke of the active role that they played in their relative's suicide-tourism journey. They conveyed conflicting emotions and values regarding the decision at hand, the ability to say goodbye thanks to their pre-planned death, helping to reduce their suffering and burden, and dealing with the challenge of disclosing the deceased's plans, before and after the act, as well as their own involvement in the process. Relatives of suicide-tourism patients should receive professional support during and following this difficult process.


Subject(s)
Decision Making , Family , Qualitative Research , Suicide, Assisted , Humans , Male , Female , Family/psychology , Switzerland , Middle Aged , Adult , Suicide, Assisted/psychology , Israel , Interviews as Topic , Aged , Attitude to Death
10.
Pediatr Transplant ; 28(5): e14824, 2024 Aug.
Article in English | MEDLINE | ID: mdl-38992881

ABSTRACT

BACKGROUND: Kidney transplantation is the treatment of choice for pediatric end-stage renal disease. Transplant recipients often have better neurocognitive, academic, and health-related outcomes. While there is some evidence that health-related quality of life (HRQOL) improves following kidney transplant, other studies have found adolescent transplant recipients report lower overall HRQOL than healthy peers. Current research has focused on individual-level factors affecting adjustment to organ transplant, warranting examination of HRQOL from a systems perspective. Family environment and social support contribute to a system of proximal relationships that are crucial in adolescents' development, making them important factors to study in relation to HRQOL post-transplant. METHODS: The current study utilized archival data of adolescent renal transplant patients who completed surveys about their family environment, social support, and HRQOL during routine transplant clinic visits. RESULTS: Family cohesion, as well as social support from parents, classmates, and people in school, were positively correlated with HRQOL. Social support from people in school uniquely predicted variance in HRQOL, beyond the contribution of overall family environment after controlling for demographic factors. Relative to comparable adolescent samples, transplant recipients reported more optimal overall family environment, greater social support from teachers, and lower social support from close friends. CONCLUSION: Psychosocial interventions for adolescent kidney transplant recipients may be enhanced by collaborating with school professionals and further bolstering strengths in the family environment. Kidney transplant recipients may benefit from long-term intervention, as decreased HRQOL appears to persist years post-transplant.


Subject(s)
Kidney Failure, Chronic , Kidney Transplantation , Quality of Life , Social Support , Humans , Adolescent , Kidney Transplantation/psychology , Male , Female , Kidney Failure, Chronic/surgery , Kidney Failure, Chronic/psychology , Surveys and Questionnaires , Family/psychology , Child , Family Relations
11.
J Med Internet Res ; 26: e49422, 2024 Jul 10.
Article in English | MEDLINE | ID: mdl-38986127

ABSTRACT

BACKGROUND: Retrospecting the trust gaps and their dynamics during the pandemic is crucial for understanding the root causes of postpandemic challenges and offers valuable insights into preparing for future public health emergencies. The COVID-19 pandemic eroded people's trust in strangers and acquaintances, while their trust in family members remained relatively stable. This resulted in 2 trust gaps, namely, the family members-strangers trust gap and the family members-acquaintances trust gap. Widening trust gaps impede social integration and undermine the effective management of public health crises. However, little is known about how digital media use shaped trust gaps during a pandemic. OBJECTIVE: This study aims to investigate the relationships between digital media use, negative emotions, the family members-strangers trust gap, and the family members-acquaintances trust gap during the COVID-19 pandemic in China. We test the mediating role of negative emotions between digital media use and 2 trust gaps and compare the indirect effect of digital media use on 2 trust gaps through negative emotions. METHODS: A cross-sectional web-based survey was conducted in China between January 31, 2020, and February 9, 2020. A total of 1568 adults participated in the survey. Questions related to digital media use, negative emotions, trust in family members, trust in acquaintances, and trust in strangers during the pandemic were asked. Regression analyses were performed to test the associations between the examined variables. We used a 95% bootstrap CI approach to estimate the mediation effects. RESULTS: Digital media use was positively associated with negative emotions (B=0.17, SE 0.03; P<.001), which in turn were positively associated with the family members-strangers trust gap (B=0.15, SE 0.03; P<.001). Likewise, digital media use was positively associated with negative emotions (B=0.17, SE 0.03; P<.001), while negative emotions were positively associated with the family members-acquaintances trust gap (B=0.08, SE 0.03; P=.01). Moreover, the indirect effect of digital media use on the family members-strangers trust gap (B=0.03, SE 0.01; 95% CI 0.01-0.04) was stronger than that on the family members-acquaintances trust gap (B=0.01, SE 0.01; 95% CI 0.003-0.027). CONCLUSIONS: The results demonstrate that negative emotions resulting from the frequent use of digital media are a key factor that accounts for the widening trust gaps. Considering the increasing reliance on digital media, the findings indicate that the appropriate use of digital media can prevent the overamplification of negative emotions and curb the enlargement of trust gaps. This may help restore social trust and prepare for future public health crises in the postpandemic era.


Subject(s)
COVID-19 , Emotions , Pandemics , Trust , Humans , COVID-19/psychology , COVID-19/epidemiology , Trust/psychology , Cross-Sectional Studies , China/epidemiology , Adult , Male , Female , Family/psychology , Surveys and Questionnaires , Middle Aged , Social Media/statistics & numerical data , Young Adult , SARS-CoV-2 , Internet
12.
Neuropsychopharmacol Hung ; 26(2): 86-93, 2024 06.
Article in English | MEDLINE | ID: mdl-38994857

ABSTRACT

BACKGROUND AND OBJECTIVE: Care for family members is a significant characteristic of families in South Asia. A family is one unit, and every other member is emotionally connected and expected to take care of each other. However, the provision of care to a family member with mental illness can be physically as well as emotionally exhausting and distressing for the Family Caregiver. The present study aimed to investigate the caregiving burden in family caregivers of depression and schizophrenia. METHOD: For this cross-sectional research, a purposive sample of 80 Family caregivers taking care of at least one family member with mental health problems of depression (n=40) and schizophrenia (n=40) were recruited for the present study. The age range of the sample was 15 to 60 years. All the respondents were literates who could read and write in Urdu. The scale used to measure the caregiving burden was Zarit Caregiving Burden Scale. The data was collected from the male (n=22) and female (n=58) family caregivers. To access data, family caregivers were approached at the psychological services clinics of Rawalpindi and Islamabad in private and public sector hospitals. RESULTS: The data were analyzed through descriptive and t-test analysis. Analyses of the data revealed that family caregivers of schizophrenia had a greater caregiving burden as compared to family caregivers of depression. Results also showed that females reported a higher caregiving burden as compared to male family caregivers. CONCLUSION: Family caregivers of schizophrenia undergo the severe burden of care and distress, and they may be considered a high-risk group for the development of mental health problems. Comprehensive intervention programs may be developed to involve them and safeguard their mental health.


Subject(s)
Caregiver Burden , Caregivers , Depression , Schizophrenia , Humans , Male , Female , Adult , Middle Aged , Schizophrenia/nursing , Schizophrenia/therapy , Pakistan/epidemiology , Caregivers/psychology , Cross-Sectional Studies , Depression/epidemiology , Depression/psychology , Adolescent , Young Adult , Caregiver Burden/psychology , Family/psychology , Cost of Illness , Surveys and Questionnaires , Stress, Psychological/etiology , Stress, Psychological/epidemiology , Stress, Psychological/psychology
13.
BMC Palliat Care ; 23(1): 175, 2024 Jul 17.
Article in English | MEDLINE | ID: mdl-39020352

ABSTRACT

INTRODUCTION: Terminal illness is an irreversible illness that, without life-sustaining procedures, usually results in death or permanent disability from which recovery is unlikely. When involved, family caregivers are believed to improve health outcomes, such as reduced hospitalization, and establishing a patient's initial access to professional treatment services. However, caring for a patient with a terminal illness is viewed as one of the most difficult aspects of providing care. This study aimed to identify the challenges, and coping strategies developed by family caregivers to cope with the care of the terminally ill person. METHODS: An exploratory descriptive qualitative approach was used. Twenty (20) family caregivers voluntarily participated in the study from the Korle-Bu Teaching Hospital. Semi-structured interviews were conducted with the participants. The transcribed interviews were then analysed using thematic analysis. RESULTS: From the analysis, three main themes emerged: challenges, coping strategies, and social support. These themes encompassed sixteen subthemes including financial burden, bad health conditions, faith and prayer, and support from health professionals. From the study, both male and female family caregivers narrated that providing care for sick relatives undergoing terminal disease is characterized as a daily duty demanding one's time and fraught with emotional strain. In addition, even though it was a difficult job, family members who provided care for ailing relatives never gave up, citing responsibility, the importance of family, and religious beliefs as the primary motivations for doing so. CONCLUSION: The difficulties and demands of family caregiving roles for terminally ill relatives are complex and multifactorial. The findings call for multidisciplinary professional attention for family caregivers and policies that will support their lives holistically.


Subject(s)
Adaptation, Psychological , Caregivers , Neoplasms , Qualitative Research , Terminally Ill , Humans , Male , Female , Caregivers/psychology , Middle Aged , Adult , Aged , Neoplasms/psychology , Terminally Ill/psychology , Social Support , Family/psychology , Aged, 80 and over , Interviews as Topic/methods , Coping Skills
14.
Health Soc Care Deliv Res ; 12(17): 1-218, 2024 Jul.
Article in English | MEDLINE | ID: mdl-39046284

ABSTRACT

Background: Childhood chronic pain is a widespread public health issue. We need to understand how children with chronic pain and their families experience chronic pain and its management. Objectives: To conduct a meta-ethnography on the experiences and perceptions of children with chronic pain and their families of chronic pain, treatments and services. We investigated how children and their families conceptualise and live with chronic pain; what they think of and want from health and social care services; and what they conceptualise as 'good' pain management. Design: Meta-ethnography with stakeholder and patient and public involvement in the design, search and sampling strategies, analysis and dissemination. Review strategy: comprehensive searches of 12 bibliographic databases and supplementary searches in September 2022, to identify qualitative studies with children aged 3 months to 18 years with chronic non-cancer pain and their families. We included studies with rich explanatory data; appraised methodological limitations using the Critical Appraisal Skills Programme tool; and extracted, analysed and synthesised studies' findings. We used Grading of Recommendations Assessment, Development and Evaluation-confidence in the evidence from reviews of qualitative research to assess confidence in review findings. We integrated findings with 14 Cochrane treatment effectiveness reviews on children's chronic non-cancer pain. Results: We synthesised 43 studies sampled from 170 eligible studies reported in 182 publications. Studies had minor (n = 24) or moderate (n = 19) methodological limitations. Grading of Recommendations Assessment, Development and Evaluation-confidence in the evidence from reviews of qualitative research assessments of review findings were high (n = 22), moderate (n = 13) or very low confidence (n = 1). Moderate and severe chronic pain had profound adverse impacts on family members' well-being, autonomy and self-identity; family dynamics; parenting approaches; friendships and socialising; children's education and parental paid employment. Most children and families sought a biomedical cure for pain. They experienced difficulties seeking and receiving support from health services to manage pain and its impacts. Consequently, some families repeatedly visited health services. Cochrane reviews of intervention effects and trials did not measure some outcomes important to children and families, for example effects of pain on the family and resolution of pain. Reviews have mainly neglected a biopsychosocial approach when considering how interventions work. Limitations: There were limited data on common pain conditions like migraine/headache, abdominal pain; some rarer conditions; children with learning disabilities and under-fives; siblings; fathers and experiences of treatments/services. We excluded studies on cancer, end-of-life pain and experiences of healthcare professionals. Conclusions: We developed the family-centred theory of children's chronic pain management, integrating health and social care with community support. Future work: Future research should explore families' experiences of services and treatments, including opioids, and social care services; experiences of children with autism and learning disabilities, under 5 years old and with certain common pain conditions. We need development and testing of family-centred interventions and services. Study registration: This study is registered as PROSPERO (CRD42019161455) and Cochrane Pain, Palliative and Supportive Care (623). Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR128671) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 17. See the NIHR Funding and Awards website for further award information.


Chronic pain lasting 3 months or more affects at least 8% of children in the UK. It causes difficulties with many aspects of children's lives including relationships, school attendance and use of National Health Services. In the UK, there are few specialist services and a lack of high-quality research for managing children's chronic pain. Our study aimed to locate and pull together existing research on the experiences and views of children with chronic pain and their families. We wanted to find out how they think about and live with chronic pain, and their views and experiences of services and treatments, and what they want to achieve from them. We conducted this study alongside children with chronic pain and their families, charities, healthcare professionals and academic experts. They helped us to conduct the study and to ensure our findings are relevant to children, families and the National Health Service. We pulled together data from 43 studies that best answered our questions. We found that moderate and severe children's chronic pain that was not well managed affected the whole family, including their relationships and social lives. Families found it difficult to get help and a diagnosis from health services. Most families wanted a medical cure for pain. Families had long waits for answers and treatment but gradually realised there may be no cure, so they focused on living well with pain or gave up hope. Children and families from ethnic minority groups or with a learning disability experienced discrimination. Few studies focused on children under 5 years old, children with learning disabilities or experiences of services. Families need a pain management approach tailored to the whole family's needs involving schools, social care and health services. Our findings could improve treatment guidelines, training of health and social care professionals and service design and treatments.


Subject(s)
Anthropology, Cultural , Chronic Pain , Pain Management , Humans , Chronic Pain/therapy , Chronic Pain/psychology , Child , Pain Management/methods , Adolescent , Child, Preschool , Family/psychology , Infant , Qualitative Research , Female , Male
15.
Sci Rep ; 14(1): 16790, 2024 Jul 22.
Article in English | MEDLINE | ID: mdl-39039112

ABSTRACT

Own child's face is one of the most socially salient stimuli for parents, and a faster search for it than for other children's faces may help provide warmer and more sensitive care. However, it has not been experimentally examined whether parents find their child's face faster. In addition, although own child's face is specially processed, the search time for own child's face may be similar to that for other socially salient stimuli, such as own or spouse's faces. This study tested these possibilities using a visual search paradigm. Participants (parents) searched for their child's, own, spouse's, other child's, same-sex adult's, or opposite-sex adult's faces as search targets. Our findings indicate that both mothers and fathers identified their child's face more quickly than other children's faces. Similarly, parents found their own and spouse's faces more quickly than other adults' faces. Moreover, the search time for family members' faces increased with the number of faces on the search display, suggesting an attentional serial search. These results suggest that robust face representations learned within families and close relationships can support reduced search times for family members' faces.


Subject(s)
Facial Recognition , Humans , Male , Female , Adult , Child , Face , Learning , Family/psychology , Reaction Time , Parents/psychology
16.
Emerg Infect Dis ; 30(8): 1724-1726, 2024 Aug.
Article in English | MEDLINE | ID: mdl-39043433

ABSTRACT

Continued detection of Panton-Valentine leukocidin-positive Staphylococcus aureus in samples from a family with severe repeated skin infections and their pet cat suggests transmission between the family and the cat. Decolonizing the pet led to successful elimination of the bacteria from the household. Clinicians should consider pet cats as possible reinfection sources.


Subject(s)
Bacterial Toxins , Exotoxins , Leukocidins , Pets , Staphylococcal Infections , Staphylococcus aureus , Leukocidins/genetics , Exotoxins/genetics , Cats , Bacterial Toxins/genetics , Animals , Staphylococcus aureus/genetics , Staphylococcus aureus/isolation & purification , Pets/microbiology , Humans , Staphylococcal Infections/microbiology , Staphylococcal Infections/veterinary , Male , Cat Diseases/microbiology , Cat Diseases/diagnosis , Female , Staphylococcal Skin Infections/microbiology , Staphylococcal Skin Infections/veterinary , Family , Adult
17.
Psychol Trauma ; 16(Suppl 2): S327-S329, 2024 Aug.
Article in English | MEDLINE | ID: mdl-39037858

ABSTRACT

We are excited to introduce this special issue on the consequences of immigration policies on children, youth, and families who experience migration-related trauma. International migration has increased over the last 5 decades. Recent estimates suggest that 281 million people live in a country other than the one in which they were born (McAuliffe & Triandafyllidou, 2021). These migratory patterns are complex and present both challenges and opportunities for trauma psychologists and professionals from diverse disciplines who approach their work with immigrants from a trauma-informed perspective. In this 21st century, a variety of stressors and crises continue to propel the movement of children, youth, and families across the globe. Trauma often pervades the experiences that cause people to leave their homes. They may need to escape oppressive political systems; criminal gangs, war, or disasters; or simply to survive. Migration itself can lead to exposure to additional traumatic events, such as physical and sexual violence, kidnapping, and trafficking. Finally, upon arrival in a host country, individuals may experience further stressors as they struggle to navigate immigration systems with discriminatory processes and inadequate resources. In this special issue, 14 articles illustrate various ways by which migration-related traumatic experiences can inform assessment and treatment, public health policy, and human rights advocacy. Focusing primarily on children and families, unaccompanied youth, and adult migrants from Latin America and other regions, the authors explore premigration, migration itself, and postmigration issues that arise when individuals migrate to survive. The articles highlight how the resiliency and strength of individuals and families can be called upon to empower them in their journey toward healing and the critical need for cross-disciplinary treatment and advocacy. (PsycInfo Database Record (c) 2024 APA, all rights reserved).


Subject(s)
Emigration and Immigration , Family , Psychological Trauma , Humans , Emigration and Immigration/legislation & jurisprudence , Child , Adolescent , Family/psychology , Psychological Trauma/psychology , Psychological Trauma/ethnology , Public Policy , Emigrants and Immigrants/psychology
18.
BMC Palliat Care ; 23(1): 176, 2024 Jul 18.
Article in English | MEDLINE | ID: mdl-39026241

ABSTRACT

BACKGROUND: Ethnic differences influence end-of-life health behaviours and use of palliative care services. Use of formal Advance care planning is not common in minority ethnic heritage communities. Older adults expect and trust their children to be their decision makers at the end of life. The study aim was to construct a theory of the dynamics that underpin end-of-life conversations within families of African and Caribbean heritage. This is a voice not well represented in the current debate on improving end-of-life outcomes. METHODS: Using Charmaz's constructivist grounded theory approach, a purposive sample of elders, adult-children, and grandchildren of African and Caribbean Heritage were recruited. In-person and online focus groups were conducted and analysed using an inductive, reflexive comparative analysis process. Initial and axial coding facilitated the creation of categories, these categories were abstracted to constructs and used in theory construction. RESULTS: Elders (n = 4), adult-children (n = 14), and adult grandchildren (n = 3) took part in 5 focus groups. A grounded theory of living and dying between cultural traditions in African and Caribbean heritage families was created. The constructs are (a) Preparing for death but not for dying (b) Complexity in traditions crosses oceans (c) Living and dying between cultures and traditions (d) There is culture, gender and there is personality (e) Watching the death of another prompts conversations. (f) An experience of Hysteresis. DISCUSSION: African and Caribbean cultures celebrate preparation for after-death processes resulting in early exposure to and opportunities for discussion of these processes. Migration results in reforming of people's habitus/ world views shaped by a mixing of cultures. Being in different geographical places impacts generational learning-by-watching of the dying process and related decision making. CONCLUSIONS: Recognising the impact of migration on the roles of different family members and the exposure of those family members to previous dying experiences is important. This can provide a more empathetic and insightful approach to partnership working between health care professionals and patients and families of minority ethic heritage facing serious illness. A public health approach focusing on enabling adult-children to have better end of life conversations with their parents can inform the development of culturally competent palliative care.


Subject(s)
Attitude to Death , Culture , Adult , Aged , Aged, 80 and over , Female , Humans , Male , Middle Aged , Attitude to Death/ethnology , Black People/psychology , Black People/ethnology , Family/psychology , Family/ethnology , Focus Groups/methods , Grounded Theory , Qualitative Research , Terminal Care/psychology , Caribbean People/psychology
19.
BMC Psychol ; 12(1): 399, 2024 Jul 18.
Article in English | MEDLINE | ID: mdl-39026265

ABSTRACT

BACKGROUND: Generalized anxiety (GA) is showing a high prevalence among adolescents nowadays; investigations on influencing factors and potential mechanisms are important to inform intervention development. The present two-wave study investigated the ways in which family functioning predicted GA six months later among adolescents, by considering the mediating role of self-identity and cognitive flexibility. METHODS: Adolescents were recruited from 27 randomly selected classes in two secondary schools in Chongqing and Fujian Province, China. Survey questionnaires assessing family functioning, self-identity, cognitive flexibility and GA were obtained from 1223 adolescents (Mage = 13.14, SD = 1.35) at two time points of the 6-month interval. RESULTS: The association between family functioning (T1) and GA (T2) was significant (r= -0.152, p < 0.01). Self-identity and cognitive flexibility sequentially mediated the relationship between family functioning (T1) and GA (T2) (with the indirect effect = -0.005, 95% CI = -0.007~ -0.002) after controlling for age, gender, and GA at baseline. Cognitive flexibility also showed a significant and direct mediating effect (with the indirect effect = -0.008, 95% CI = -0.012 ~ -0.005). CONCLUSION: Findings indicated that family functioning can be a protective factor of GA, and self-identity and cognitive flexibility act as a crucial role in the association between family functioning and GA. Future studies should adopt more time points and long-term follow-up assessments using more robust approaches to improve the reliability of the study findings. Findings may offer some implications that building a harmonious, open and warm family and guiding adolescents to develop self-identity as well as more flexible cognitive style could be helpful to prevent and cope with anxious emotion.


Subject(s)
Self Concept , Humans , Adolescent , Female , Male , Longitudinal Studies , China/epidemiology , Cognition , Anxiety/psychology , Anxiety/epidemiology , Family Relations/psychology , Surveys and Questionnaires , Anxiety Disorders/psychology , Anxiety Disorders/epidemiology , Executive Function , Family/psychology
20.
PLoS One ; 19(7): e0305543, 2024.
Article in English | MEDLINE | ID: mdl-38976707

ABSTRACT

Existing barriers to care were exacerbated by the development and implementation of necessary public health restrictions during the COVID-19 pandemic. Children with complex care needs and their families represent a small portion of the paediatric population, and yet they require disproportionately high access to services. Little is known about the impact of COVID-19 public health measures on this population. This study will generate evidence to uncover the wider impact of COVID-19 measures on the lives of children with complex care needs and their families in relation to policy and service changes. This multi-site sequential mixed methods study will take place across the Canadian Maritime provinces and use an integrated knowledge translation approach. There are two phases to this study: 1) map COVID-19 public health restrictions and service changes impacting children with complex care needs by conducting an environmental scan of public health restrictions and service changes between March 2020 and March 2022 and interviewing key informants involved in the development or implementation of restrictions and service changes, and 2) explore how children with complex care needs and their families experienced public health restrictions and service changes to understand how their health and well-being were impacted.


Subject(s)
COVID-19 , Humans , COVID-19/epidemiology , Child , Canada/epidemiology , Family , SARS-CoV-2/isolation & purification , Pandemics , Health Services Accessibility , Adolescent , Child, Preschool , Male , Female , Public Health
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