RESUMO
BACKGROUND: Unaddressed psychosocial risks may contribute to disparities in cancer care outcomes and may be addressed by early psychosocial risk screening. In a study implementing universal family psychosocial risk screening in 18 children's cancer programs in the United States, parents, clinicians, and organizational leaders described the importance of universal screening to health equity. PURPOSES: The purposes of this study were to (1) describe the perspectives of parents, clinicians, and organizational leaders regarding the importance of universal family psychosocial risk screening in childhood cancer care and (2) identify barriers and facilitators to improving health equity and decreasing health disparities in childhood cancer through universal family psychosocial screening. METHODS: Nineteen participants (parent advocates, clinicians, leaders in professional organizations and healthcare policy) were interviewed. Directed content analysis was used to identify thematic descriptions. RESULTS: Theme 1: Personal (individual child and family) and systemic barriers to health care contribute to health disparities and can be identified by universal family psychosocial risk screening in pediatric cancer. Theme 2: Universal family psychosocial risk screening in pediatric cancer creates the opportunity for health equity through personalized psychosocial care. Theme 3: Recognition of health inequities and guidance from the Standards of Psychosocial Care for Children with Cancer and their Families suggest that clinicians and healthcare systems are ethically obligated to screen, provide resources, and advocate for services to meet identified needs. CONCLUSIONS: Universal family psychosocial risk screening in pediatric oncology creates the opportunity to support efforts for health equity by guiding delivery of personalized psychosocial care. TRIAL REGISTRATION: NCT04446728 23 June 2020.
Assuntos
Equidade em Saúde , Neoplasias , Criança , Detecção Precoce de Câncer , Família , Humanos , Oncologia , Neoplasias/diagnóstico , Neoplasias/psicologia , Estados UnidosRESUMO
Background: Parents are a central focus in clinical infant mental health interventions because of the key importance of the caregiver-infant relationship, especially when dyads are burdened by psychosocial and parental mental health problems. However, knowledge is scarce about the lived experience of vulnerable parents who undergo video-based guidance. Aim: The study explores how parents in an infant-psychiatric outpatient clinic who struggled to mentalize and remain emotionally connected to their infant experienced helpful and challenging elements in video guidance. Method: We analyzed the interviews of a strategic sample of 12 parents after undergoing Marte Meo video guidance, using a team-based, reflexive thematic analysis (TA). Results: We identified four main themes: (a) Handling initial feelings of fear and loss of control; (b) Filming as a disturbing or agentic experience; (c) Feeling validated or devalued in the therapeutic relationship; and (d) Bringing insights from video guidance into everyday life. Therapeutic and existential factors became apparent in the main themes of adjustment to the guidance, experiences with filming, the therapeutic relationship and integration of new experiences. Conclusion: The parents' sense of agency, dignity, and shame may be important for their ability to integrate new ideas about themselves. Implications: Video guidance for vulnerable parents in specialized clinical treatment should address relational challenges, parental mental health, and issues of recognition.
Assuntos
Desenvolvimento Infantil , Psicopatologia , Adolescente , Psiquiatria do Adolescente , Criança , Família , Humanos , PaisRESUMO
[This corrects the article DOI: 10.3389/fped.2019.00163.].
RESUMO
Objective: Primary immune thrombocytopenia (ITP) is a hemorrhagic disorder. Spontaneous recovery within 12 months occurs in the majority of pediatric patients. Nevertheless, in 20-30% of children the disease is chronic. The impact extends to the patients' families, whose everyday life, in terms of interpersonal relationships and financial status, is adversely affected. This study investigated the ability of a narrative instrument to improve the quality of life of pediatric chronic ITP patients and their families and quantified the familial burden imposed by the illness. Method: A quantitative survey and a narrative plot delivered through an online platform were adopted for the analysis. Results: Pediatricians of ten Italian Hematologic Centers explained the projects to patients and their family in the outpatient clinic. 70 caregivers of children with ITP filled the ad-hoc questionnaire. Data from 53 caregivers revealed the emotional impact of pediatric chronic ITP. The narrative approach highlighted the specific resources used by patients and their families to cope with the disease and its chronicity. Discussion: Caregivers underlined the need for "humaneness" in their interactions with clinical personnel. The majority of respondents provided positive feedback regarding the narrative project, defining the experience as "liberating" and improving their quality of life.