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1.
Rev. SPAGESP ; 23(1): 175-190, jan.-jun. 2022.
Artículo en Portugués | LILACS, Index Psicología - Revistas | ID: biblio-1356778

RESUMEN

RESUMO A construção dos vínculos na adoção é um processo complexo, com momentos de fragilização emocional para os adultos e para as crianças e adolescentes, porém os serviços de suporte às famílias no pós-adoção ainda são escassos. Estudos internacionais apontam para a necessidade de apoio sentida pelas famílias em processo de adoção e os Grupos de Apoio à Adoção (GAA) têm sido uma modalidade importante de suporte no Brasil. Pensando na importante contribuição que os GAA podem exercer nas famílias por adoção, este estudo pretende descrever a experiência de uma parceria entre Universidade e uma ONG Sul-brasileira durante o período de um ano, na condução dos trabalhos do grupo. Os encontros aconteceram mensalmente e foram conduzidos por estudantes de pós-graduação com experiência clínica e de pesquisa na área da adoção e os temas dos encontros eram escolhidos pelas próprias famílias participantes. A experiência permitiu evidenciar a potência do grupo ao incentivar que sentimentos e dúvidas fossem relatados em um ambiente acolhedor e sem julgamentos, o que contribuiu para a desmistificação de temas relacionados à adoção e, possivelmente, para a construção e fortalecimento dos vínculos com as crianças e com outras famílias.


ABSTRACT Forming bonds in adoption is a complex process, with moments of emotional fragility for adults and for children and adolescents, but services to support families in the post-adoption period are still scarce. International studies point to the need for support felt by families in the process of adoption and Adoption Support Groups (GAA, in Portuguese) have been an important modality of support in Brazil. Bearing in mind the important contribution that GAA can make to families by adoption, this study intends to describe the experience of a partnership between the University and a South-Brazilian ONG (in Portuguese) during a one-year period, in conducting the group’s work. The groups took place monthly and were conducted by graduate students with clinical and research experience in the field of adoption. The themes of the meetings were chosen by the participating families themselves. The experience showed the power of the group to encourage families to report feelings and doubts in a welcoming and non-judgmental environment, which contributed to the demystification of themes related to adoption and, possibly, to the construction and strengthening of bonds with children and with other families.


RESUMEN La construcción de vínculos durante la adopción es un proceso complejo, con momentos de debilidad emocional para adultos y para niños y adolescentes, pero los servicios de apoyo a las familias en el período posadopción aún son escasos. Estudios internacionales apuntan a la necesidad de apoyo que sienten las familias en el proceso de adopción y los Grupos de Apoyo a la Adopción (GAA) han sido una modalidad importante de apoyo en Brasil. Teniendo en cuenta la importante contribución que GAA puede hacer a las familias por adopción, este estudio pretende describir la experiencia de una asociación entre la Universidad y una ONG del sur de Brasil durante un período de un año, en la conducción del trabajo del grupo. Los grupos se realizaron mensualmente y fueron conducidos por estudiantes graduados con experiencia clínica y de investigación en el campo de la adopción y los temas de los encuentros fueron elegidos por las propias familias participantes. La experiencia mostró el poder del grupo para alentar sentimientos y dudas a ser reportados en un ambiente acogedor y sin prejuicios, lo que contribuyó a la desmitificación de temas relacionados con la adopción y posiblemente a la construcción y fortalecimiento de vínculos con los niños y con otras familias.


Asunto(s)
Humanos , Grupos de Autoayuda , Poder Psicológico , Adopción , Familia , Responsabilidad Parental , Relaciones Familiares
2.
BMC Prim Care ; 23(1): 105, 2022 05 05.
Artículo en Inglés | MEDLINE | ID: mdl-35513778

RESUMEN

BACKGROUND: The novel coronavirus brought Intensive Care Units (ICUs) back to their past when they were closed to family members. The difficulties of family caregivers encountered after the ICU discharge might have been increased during the coronavirus disease 2019 (COVID-19) pandemic. However, no traces of their experience have been documented to date. The objective of this study is to explore the everyday life experience of relatives in the first three months after a non-COVID-19 ICU discharge. METHODS: A descriptive qualitative study was conducted in 2020-2021. Two Italian general non-COVID-19 ICUs were approached. Follow-up telephone interviews were conducted three months after the ICU discharge. The study has been conducted according to the COnsolidated criteria for REporting Qualitative research principles. RESULTS: A total of 14 family members were interviewed. Participants were mostly females (n = 11; 78.6%), with an average age of 53.9 years. After three months of care of their beloved at home, relatives' experience is summarised in three themes: "Being shaken following the ICU discharge", as experiencing negative and positive feelings; "Returning to our life that is no longer the same", as realising that nothing can be as before; and "Feeling powerless due to the COVID-19 pandemic", given the missed care from community services and the restrictions imposed. CONCLUSIONS: Relatives seem to have experienced a bilateral restriction of opportunities - at the hospital without any engagement in care activities and their limited possibility to visit the ICU, and at home in terms of formal and informal care.


Asunto(s)
Familia , Unidades de Cuidados Intensivos , Alta del Paciente , COVID-19/epidemiología , Cuidados Críticos/psicología , Familia/psicología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Pandemias , Investigación Cualitativa
3.
BMC Res Notes ; 15(1): 161, 2022 May 10.
Artículo en Inglés | MEDLINE | ID: mdl-35538579

RESUMEN

OBJECTIVES: Research examining the age of diagnosis of autism spectrum disorder (ASD) and its influencing factors mostly originate from developed Western countries, providing little to no systematic information about the understanding and management of ASD in the rest of the world. The present exploratory study examined the influence of child and family characteristics on the age of ASD diagnosis in Saudi Arabia. RESULTS: The median age at diagnosis was 3.0 years and was associated with some child and family characteristics. A 1 year increase in child's age was associated with a 0.1 year increase in age of diagnosis (95% CI 0.05, 0.12). Children who did not respond to their name were diagnosed 0.3 years earlier than other children (95% CI - 0.60, - 0.05), and engaging in challenging behavior was associated with a 0.5 year increase in age of diagnosis (95% CI 0.20, 0.81). A lack of comorbidity was associated with a 0.6 year increase in the age of diagnosis compared to the diagnosis age of children with comorbidity (95% CI 0.13, 1.01). Finally, those residing outside of Saudi Arabia were diagnosed with ASD 0.9 years earlier than those residing in Saudi Arabia (95% CI - 0.171, - 0.11).


Asunto(s)
Trastorno del Espectro Autista , Trastorno del Espectro Autista/diagnóstico , Trastorno del Espectro Autista/epidemiología , Niño , Estudios Transversales , Familia , Humanos , Arabia Saudita/epidemiología
4.
BMJ Open ; 12(5): e058128, 2022 May 02.
Artículo en Inglés | MEDLINE | ID: mdl-35501074

RESUMEN

OBJECTIVES: The aim of this study was to assess the impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the quality of life (QoL) of people with ME/CFS and their relative or partner (family member). DESIGN: A patient-partner, multinational, subject-initiated, cross-sectional online survey. SETTING: International survey using ME/CFS charities, support groups and social media. PARTICIPANTS: Participants were self-selected with recruitment via social media. Inclusion criteria were aged 18 years or over and reported diagnosis of ME/CFS by health professional. 1418 people with ME/CFS and their 1418 family members from 30 countries participated in the survey. Participants with ME/CFS had a mean age of 45.8 years (range 18-81) and were predominantly women (1214 (85.6%) of 1418). Family members had a mean age of 51.9 years (range 18-87) and were predominantly men (women: 504 (35.5%) of 1418). 991 (70%) family members were partners of the people with ME/CFS. INTERVENTIONS: EuroQoL-5 Dimension (EQ-5D-3L), completed by people with ME/CFS, and Family Reported Outcome Measure (FROM-16) questionnaire, completed by family members. RESULTS: The mean overall health status on a Visual Analogue Scale for people with ME/CFS was 33.8 (0=worst, 100=best). People with ME/CFS were most affected by ability to perform usual activities, pain, mobility, self-care and least impacted by anxiety. For family members, the overall mean FROM-16 score was 17.9 (0=no impact, 32=worst impact), demonstrating a major impact on QoL. Impact on QoL was significantly correlated between the person with ME/CFS and their family member (p<0.0001). Family members were most impacted emotionally by worry, frustration and sadness and personally by family activities, holidays, sex life and finances. CONCLUSIONS: To the best of our knowledge, this is the largest study on the impact of the QoL of persons with ME/CFS and their family members. While open participation surveys are limited by selection bias, this research has revealed a significant worldwide burden of ME/CFS on the QoL of people with ME/CFS and their family members.


Asunto(s)
Síndrome de Fatiga Crónica , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Estudios Transversales , Familia , Síndrome de Fatiga Crónica/psicología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Calidad de Vida , Encuestas y Cuestionarios , Adulto Joven
5.
Niger J Clin Pract ; 25(5): 557-562, 2022 May.
Artículo en Inglés | MEDLINE | ID: mdl-35593595

RESUMEN

Aim: The aim of this study was to investigate the pit and fissure morphology of the permanent first molars (PFMs) in the dentition of 7- to 12-year-old patients in Turkish children. Patients and Methods: The study was conducted on 706 patients who attended the Dokuz Eylul University Child Clinic. Examinations of the patients were carried out with dental unit light, mouth mirror, and probe by two dentists. Age, gender, plaque scores, pit and fissure morphology, caries, restorations, and missing teeth were recorded. Results: Of the 706 patients included in this study, 441 (62.5%) of them have affected PFMs. Intermediate type fissure morphology (57.5%) was seen as the most common type. A positive correlation was observed between the age and the caries experience (p = 0.000). Patients with deep pits and fissure morphology have more caries affected teeth than patients with shallow pit and fissure morphology, and the difference was statistically significant (p = 0.000). Patients with deep pits and fissure morphology have significantly more plaque accumulation on PFMs compared to the patients with shallow and intermediate fissure morphology (p = 0.000). Conclusions: Despite the limitations of the study, we can conclude that the patients with deep pit-fissure morphology are more susceptible to caries development and plaque accumulation than the patients with shallow and intermediate type pit and fissure morphology.


Asunto(s)
Caries Dental , Selladores de Fosas y Fisuras , Niño , Caries Dental/epidemiología , Familia , Humanos , Microcirugia , Diente Molar , Turquia/epidemiología
6.
Niger J Clin Pract ; 25(5): 725-727, 2022 May.
Artículo en Inglés | MEDLINE | ID: mdl-35593619

RESUMEN

Background: Marfan syndrome (MFS) is a multisystem connective tissue disorder involving the cardiovascular, skeletal, and ocular systems. Case Report: We present a case of a 15-year-old boy who was sent to the ophthalmologist for the checkup of the primary disease-hypercalciuria and gigantism for the first time at the age of 5.5 years. After the ophthalmological examination (low myopia <-3.0 diopters, ectopic lens with defects in the nasal lens zonules detected by ultrasound biomicroscopy) and owing to gigantism, suspecting of MFS, we referred the patient for further diagnosis, treatment, and follow-ups. Conclusion: The child's excessive growth pointed to the presence of gigantism in the very beginning. A duly identified problem of MFS in our patient at an early age contributed to the correct diagnosis and prevention of the development of amblyopia in the child.


Asunto(s)
Gigantismo , Síndrome de Marfan , Miopía , Oftalmólogos , Adolescente , Niño , Preescolar , Familia , Humanos , Masculino , Síndrome de Marfan/diagnóstico
7.
J Pain Symptom Manage ; 63(6): e579-e586, 2022 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-35595371

RESUMEN

Palliative care research is deeply challenging for many reasons, not the least of which is the conceptual and operational difficulty of measuring outcomes within a seriously ill population such as critically ill patients and their family members. This manuscript describes how Randy Curtis and his network of collaborators successfully confronted some of the most vexing outcomes measurement problems in the field, and by so doing, have enhanced clinical care and research alike. Beginning with a discussion of the clinical challenges of measurement in palliative care, we then discuss a selection of the novel measures developed by Randy and his collaborators and conclude with a look toward the future evolution of these concepts. Randy and his foundational work, including both successes as well as the occasional near miss, have enriched and advanced the field as well as (immeasurably) impacted the work of so many others-including this manuscript's authors.


Asunto(s)
Enfermería de Cuidados Paliativos al Final de la Vida , Cuidados Paliativos , Enfermedad Crítica/terapia , Familia , Humanos
8.
Popul Health Metr ; 20(1): 14, 2022 May 21.
Artículo en Inglés | MEDLINE | ID: mdl-35597940

RESUMEN

BACKGROUND: There is a critical need for maternal and child health data at the local level (for example, county), yet most counties lack sustainable resources or capabilities to collect local-level data. In such case, model-based small area estimation (SAE) could be a feasible approach. SAE for maternal or infant health-related behaviors at small areas has never been conducted or evaluated. METHODS: We applied multilevel regression with post-stratification approach to produce county-level estimates using Pregnancy Risk Assessment Monitoring System (PRAMS) data, 2016-2018 (n = 65,803 from 23 states) for 2 key outcomes, breastfeeding at 8 weeks and infant non-supine sleeping position. RESULTS: Among the 1,471 counties, the median model estimate of breastfeeding at 8 weeks was 59.8% (ranged from 34.9 to 87.4%), and the median of infant non-supine sleeping position was 16.6% (ranged from 10.3 to 39.0%). Strong correlations were found between model estimates and direct estimates for both indicators at the state level. Model estimates for both indicators were close to direct estimates in magnitude for Philadelphia County, Pennsylvania. CONCLUSION: Our findings support this approach being potentially applied to other maternal and infant health and behavioral indicators in PRAMS to facilitate public health decision-making at the local level.


Asunto(s)
Conductas Relacionadas con la Salud , Vigilancia de la Población , Niño , Familia , Femenino , Humanos , Lactante , Embarazo , Medición de Riesgo
9.
Tijdschr Psychiatr ; 64(4): 195-201, 2022.
Artículo en Holandés | MEDLINE | ID: mdl-35506971

RESUMEN

BACKGROUND: Pediatricians and child and adolescent psychiatrists share patient populations. However, the availability of child and adolescent psychiatric care in Dutch hospitals is often limited. AIM: To inventorize the experiences and wishes of Dutch pediatricians with regard to collaboration between pediatrics and child and adolescent psychiatry, especially in the St. Antonius Hospital where consultation has been started. METHOD: Online survey among pediatricians in 16 hospitals in the Netherlands and qualitative interviews with pediatricians and medical psychologists in the St. Antonius Hospital. RESULTS: Interview attendees experienced obstacles in waiting lists, organization of care, and limited options for immediate consultation. The majority experienced that child and adolescent psychiatric care was insufficient in their hospitals. CONCLUSION: Extending consultative collaboration could improve the care for children and reduce some of the obstacles experienced by the participants of this study. Consultation contributes to quality of care in hospitals and encourages collaboration.


Asunto(s)
Psiquiatría Infantil , Psiquiatría , Adolescente , Psiquiatría del Adolescente , Niño , Familia , Humanos , Pediatras , Derivación y Consulta
11.
J Neurodev Disord ; 14(1): 27, 2022 May 02.
Artículo en Inglés | MEDLINE | ID: mdl-35501684

RESUMEN

BACKGROUND: The development of advanced genetic technologies has resulted in rapid identification of genetic etiologies of neurodevelopmental disorders (NDDs) and has transformed the classification and diagnosis of various NDDs. However, diagnostic genetics has far outpaced our ability to provide timely medical counseling, guidance, and care for patients with genetically defined NDDs. These patients and their caregivers present with an unmet need for care coordination across multiple domains including medical, developmental, and psychiatric care and for educational resources and guidance from care professionals. After a genetic diagnosis is made, families also face several barriers in access to informed diagnostic evaluations and medical support. METHODS: As part of Care and Research in Neurogenetics (CARING), a multidisciplinary clinical program for children and adults with neurogenetic disorders, we conducted qualitative clinical interviews about the diagnostic journey of families. This included the overall timeline to receiving diagnoses, experiences before and after diagnosis, barriers to care, and resources that helped them to navigate the diagnostic process. RESULTS: A total of 37 interviews were conducted with parents of children ages 16 months to 33 years. Several key themes were identified: (1) delays between initial caregiver observations and formal developmental or genetic diagnoses; (2) practical barriers to clinical evaluation and care, including long wait times for an appointment, lack of insurance coverage, availability of local evaluations, transportation difficulties, and native language differences; (3) the importance of being part of a patient advocacy group to help navigate the diagnostic journey; and (4) unique challenges faced by adults (18 years or older). CONCLUSIONS: Families of children with complex neurodevelopmental and genetic disabilities face numerous challenges in finding adequate medical care and services for their child. They experience considerable delays in receiving timely diagnoses and face significant barriers that further delay the process of receiving access to services needed for the child's continued care. The gaps indicated in this study speak to the need for more comprehensive coordination of care for patients with intellectual and developmental disabilities, as well as the development of systematic, disorder-specific resources both for providers and families in order to improve patient outcomes.


Asunto(s)
Trastornos del Neurodesarrollo , Adulto , Cuidadores/psicología , Niño , Familia , Humanos , Lactante , Trastornos del Neurodesarrollo/diagnóstico , Trastornos del Neurodesarrollo/genética , Padres/psicología
12.
Ned Tijdschr Geneeskd ; 1662022 03 22.
Artículo en Holandés | MEDLINE | ID: mdl-35499612

RESUMEN

Death rattle, noisy breathing, is a frequent symptom in terminally ill patients for which (non)pharmacological treatment can be indicated. Although it remains unclear whether patients really experience suffering, family members may interpret this as a distressing sign of discomfort. Careful family communication remains pivotal. The SILENCE-study investigated the effectiveness of prophylactic use of scopolamine butylbromide to prevent death rattle. A double blinded randomized clinical trial in hospice patients was performed. Results were that patients in the intervention group had a significant lower prevalence of death rattle compared to the control group. The study applied innovative ways for performing a complex intervention study in palliative patients. Further reflection however is needed whether such preventive medication use may increase medicalization at the end of life. In this way, the Silence study gives rise for a broader reflection about what constitutes a good death and how society can take care of this.


Asunto(s)
Cuidado Terminal , Familia , Humanos , Cuidados Paliativos , Prevalencia , Ruidos Respiratorios , Cuidado Terminal/métodos
13.
Pediatrics ; 149(Suppl 5)2022 May 01.
Artículo en Inglés | MEDLINE | ID: mdl-35503309

RESUMEN

Advances in developmental psychology, child psychiatry, and allied disciplines have pointed to events and experiences in the early years as the origin of many adult mental health challenges. Yet, children's mental health services still largely lack a developmental or prevention-focused orientation, with most referrals to mental health professionals occurring late, once problems are well established. An early childhood mental health system rooted in the principles of life-course health development would take a very different approach to designing, testing, and implementing prevention and intervention strategies directed toward early child mental health. Priorities for such a system include supporting healthy family environments, parent-child and family relationships, parents' emotional/behavioral health, and family routines as a means of providing the best possible neurobiological foundation for mental health across the life span. The system would include proactive, trauma-informed, multidisciplinary care, with integrated mental health and social services support embedded in pediatric primary care settings. Novel intervention approaches in need of further research include 2-generational dyadic interventions designed to improve the mental health of parents and children, mental health-oriented telemedicine, and contingency management (CM) strategies. Integral to this Life Course Health Development reformulation is a commitment by all organizations supporting children to primordial and primary prevention strategies to reduce racial and socioeconomic disparities in all settings. We contend that it is the family, not the individual child, that ought to be the identified target of these redesigned approaches, delivered through a transformed pediatric system with anticipated benefits for multiple health outcomes across the life course.


Asunto(s)
Salud Mental , Padres , Adulto , Niño , Preescolar , Familia , Relaciones Familiares , Humanos , Padres/psicología
14.
Pediatrics ; 149(Suppl 5)2022 May 01.
Artículo en Inglés | MEDLINE | ID: mdl-35503310

RESUMEN

Life course intervention research requires a thorough understanding of complex factors that interact to affect health over time. Partnerships with families and communities are critical to understanding these interconnections and identifying effective interventions. Here, family and community engagement are presented, aligned with the 5 phases of the life course intervention research framework: planning, design, implementation, evaluation, and translation. During planning, the researcher considers their own starting position and what they need to learn from families and the community. The design phase produces a plan for family engagement that is layered, iterative, and includes qualitative methods that will inform life course modeling and the research process. The implementation phase includes administrative actions such as creating opportunities for contributions and providing compensation to family and community partners. The evaluation phase requires measurement of the quality of partnerships with families and community and includes making adjustments as indicated to improve these partnerships. This phase also calls for reflection on the impact these partnerships had on the intervention, including if they made a difference for those being served. During translation, the researcher works with all partners, including families and communities, about follow up steps toward project continuation, replication, or completion. The researcher also works collaboratively in determining how the study results are shared. A holistic approach to health over the life course that is designed and executed in partnership with families and their community can generate research findings with broad practical applicability and strong translational potential.


Asunto(s)
Familia , Acontecimientos que Cambian la Vida , Humanos
16.
Pediatrics ; 149(Suppl 5)2022 May 01.
Artículo en Inglés | MEDLINE | ID: mdl-35503316

RESUMEN

In recognition of the family as central to health, the concept of family, rather than individual, health has been an important area of research and, increasingly, clinical practice. There is a need to leverage existing theories of family health to align with our evolving understanding of Life Course Health Development, including the opportunities and constraints of the family context for promoting lifelong individual and population health. The purpose of this article is to propose an integrative model of family health development within a Life Course Health Development lens to facilitate conceptualization, research, and clinical practice. This model provides an organizing heuristic model for understanding the dynamic interactions between family structures, processes, cognitions, and behaviors across development. Potential applications of this model are discussed.


Asunto(s)
Salud de la Familia , Relaciones Familiares , Formación de Concepto , Familia , Humanos , Acontecimientos que Cambian la Vida
17.
Pediatrics ; 149(Suppl 5)2022 May 01.
Artículo en Inglés | MEDLINE | ID: mdl-35503330

RESUMEN

OBJECTIVE: Middle childhood is a critical period for physical, social, behavioral, and cognitive changes. A positive and healthy sexual and reproductive health and rights (SRHR) foundation can minimize SRHR risks, leading to better outcomes. Our objective is to identify effective educational interventions promoting or supporting the SRHR of school-age children in low and middle-income countries. DATA SOURCES: Medline, Embase, CINAHL, APA PsycInfo, ERIC, Cochrane Central Register of Controlled Trials, Education Source, Web of Science, SciELO Citation Index, Global Health, and Sociological Abstract were searched from 2000 to December 2020. STUDY SELECTION: Eligible articles had a sample mean age between 5 and 10 years, quantitatively tested the effects of educational interventions against a comparison group, and measured SRHR related outcomes. DATA EXTRACTION: Data extracted from the 11 eligible articles were study methods, participant characteristics, interventions and comparisons, outcome measures, and results. RESULTS: The review found evidence of significant intervention effects on protective knowledge, attitudes, behaviors, and skills for preventing sexual violence and HIV infection. The strongest evidence was for significant improvements in children's knowledge of child sexual abuse prevention concepts and strategies. LIMITATIONS: A meta-analysis could not be performed because most studies lacked randomization, included no information on the magnitude of effects, and had inadequate follow-up evaluations to truly assess retention. Only a few studies contributed to findings on protective attitudes, behaviors, and skills against child sexual abuse, gender-based violence, and human immunodeficiency virus infection, as well as physiologic outcome. CONCLUSIONS: The educational interventions demonstrated significant improvements in primary school children's protective capacities, especially in their protective knowledge against sexual abuse.


Asunto(s)
Infecciones por VIH , Salud Reproductiva , Niño , Preescolar , Países en Desarrollo , Familia , Infecciones por VIH/epidemiología , Infecciones por VIH/prevención & control , Humanos , Conducta Sexual
18.
Cien Saude Colet ; 27(5): 1929-1938, 2022 May.
Artículo en Portugués | MEDLINE | ID: mdl-35544820

RESUMEN

The scope of this article is to revisit the Therapeutic Consultations of psychoanalyst Donald Winnicott, seeking to identify technical and ethical contributions which can strengthen the "matrix support" and joint consultations in the Unified Health System (SUS). A rereading of Winnicott's texts and those of commentators is conducted, presenting a debate between the author's ideas and the work in mental health in primary care. Based on detailed case analysis, the article addresses some implications for the practice of matrix support, both in the intervention by the team, and in listening to the patient and family members. In addition, based on a contextualized study of Winnicott's consultation reports, the work presents contributions for joint consultations in the SUS, both in its care and in its formative axis. The following stand out in terms of technical and ethical results: (a) the priority of listening directly to the person who gave rise to the complaint; (b) the importance of sustaining "space and time" to allow a meaningful experience for the patient; (c) the use of interview instruments in the light of "shared playing"; (d) the patient as an active subject in the construction of his therapeutic project; (e) the importance of the local team in supporting and "translating" the patient's experience.


O artigo tem como objetivo revisitar as Consultas Terapêuticas do psicanalista Donald Winnicott, buscando identificar nesta estratégia clínica subsídios para a sustentação técnica e ética do apoio matricial e das consultas conjuntas no Sistema Único de Saúde (SUS). Para tanto, realiza-se uma releitura de textos de Winnicott e comentadores, colocando-os em debate com aspectos do trabalho em saúde mental na atenção básica. A partir da análise detalhada de uma das consultas descritas pelo psicanalista, abordam-se implicações para a prática do apoio matricial, tanto na intervenção junto à equipe, como na escuta do paciente e sua família. Além disso, com base no estudo dos relatos de consultas de Winnicott, apresentam-se contribuições para as consultas conjuntas no SUS, considerando seus eixos assistencial e formativo. Como resultados técnicos e éticos, destacam-se: (a) a prioridade da escuta direta da pessoa sobre quem advém a queixa; (b) a importância de sustentar o "espaço e tempo" que possibilite uma experiência significativa ao paciente; (c) o uso de instrumentos de entrevista à luz do "brincar partilhado"; (d) o paciente como sujeito ativo na construção de seu projeto terapêutico; (e) a importância da equipe local no suporte e "tradução" da experiência do paciente.


Asunto(s)
Principios Morales , Teoría Psicoanalítica , Familia , Humanos , Salud Mental , Derivación y Consulta
19.
Health Qual Life Outcomes ; 20(1): 76, 2022 May 07.
Artículo en Inglés | MEDLINE | ID: mdl-35525943

RESUMEN

BACKGROUND: The diagnosis of a neurodegenerative disease (ND) produces profound changes in the quality of life of the affected families. Despite the vital importance of these processes, the scientific literature has addressed this topic almost exclusively relating to the main caregiver or using limited approaches. Thus, the main objective of this research is to achieve a deeper understanding of the quality of family life of people with a neurodegenerative disease, following a mixed-method approach that combines quantitative and qualitative methodology. METHODS: The quantitative instrument was the Spanish version of the Family Quality of Life Survey-Neurodegenerative Disease (FQOLS-ND), which was completed by 300 participating families. The qualitative methodology was used in two focus groups with family caregivers, with a total of 21 participants. RESULTS: On the one hand, confirmation of the dimensional structure of the scale in the focus groups was obtained and, on the other hand, the results of family quality of life in attainment and satisfaction were shown to be high for Family Relations and Careers and Planning for Careers and low for Support from Services and Leisure and Recreation. CONCLUSIONS: The results of this study, through the combination of quantitative and qualitative information, helps to identify key issues to optimize services that respond to the priority needs of families.


Asunto(s)
Enfermedades Neurodegenerativas , Calidad de Vida , Cuidadores , Familia , Humanos
20.
Orphanet J Rare Dis ; 17(1): 182, 2022 May 07.
Artículo en Inglés | MEDLINE | ID: mdl-35525989

RESUMEN

BACKGROUND: This study aimed to identify fit-for-purpose clinical outcome assessments (COAs) to evaluate physical function, as well as social and emotional well-being in clinical trials enrolling a pediatric population with achondroplasia. Qualitative interviews lasting up to 90 min were conducted in the US with children/adolescents with achondroplasia and/or their caregivers. Interviews utilized concept elicitation methodology to explore experiences and priorities for treatment outcomes. Cognitive debriefing methodology explored relevance and understanding of selected COAs. RESULTS: Interviews (N = 36) were conducted with caregivers of children age 0-2 years (n = 8) and 3-7 years (n = 7) and child/caregiver dyads with children age 8-11 years (n = 15) and 12-17 years (n = 6). Children/caregivers identified pain, short stature, impacts on physical functioning, and impacts on well-being (e.g. negative attention/comments) as key bothersome aspects of achondroplasia. Caregivers considered an increase in height (n = 9/14, 64%) and an improvement in limb proportion (n = 11/14, 71%) as successful treatment outcomes. The Childhood Health Assessment Questionnaire (CHAQ) and Quality of Life in Short Stature Youth (QoLISSY-Brief) were cognitively debriefed. CHAQ items evaluating activities, reaching, and hygiene were most relevant. QoLISSY-Brief items evaluating reaching, height bother, being treated differently, and height preventing doing things others could were most relevant. The CHAQ and QoLISSY-Brief instructions, item wording, response scales/options and recall period were well understood by caregivers and adolescents age 12-17. Some children aged 8-11 had difficulty reading, understanding, or required caregiver input. Feedback informed minor amendments to the CHAQ and the addition of a 7-day recall period to the QoLISSY-Brief. These amendments were subsequently reviewed and confirmed in N = 12 interviews with caregivers of children age 0-11 (n = 9) and adolescents age 12-17 (n = 3). CONCLUSIONS: Achondroplasia impacts physical functioning and emotional/social well-being. An increase in height and improvement in limb proportion are considered to be important treatment outcomes, but children/adolescents and their caregivers expect that a successful treatment should also improve important functional outcomes such as reach. The CHAQ (adapted for achondroplasia) and QoLISSY-Brief are relevant and appropriate measures of physical function and emotional/social well-being for pediatric achondroplasia trials; patient-report is recommended for age 12-17 years and caregiver-report is recommended for age 0-11 years.


Asunto(s)
Acondroplasia , Calidad de Vida , Adolescente , Cuidadores/psicología , Niño , Familia , Humanos , Calidad de Vida/psicología , Encuestas y Cuestionarios , Resultado del Tratamiento
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