Percepción de los padres acerca de la comunicación sobre sexualidad de sus hijos con trastorno del espectro autista / Parents' perceptions of communication about sexuality to their children with autism spectrum disorder

Objetivo: Explorar las percepciones de los padres en relación con la comunicación sobre sexualidad hacia sus hijos que se encuentran dentro del espectro autista. Método:Estudio cualitativo descriptivo y exploratorio, que fue desarrollado en tres centros de atención a niños y adolescentes autistas en los estados de Baja California y Sinaloa, México. Participaron cuatro madres y un padre de niños/jóvenes con Trastorno del Espectro Autista y para la recogida de datos fueron utilizadas entrevistas semiestructuradas. Los datos fueron analizados por medio de la técnica de análisis de contenido. Resultados:Fueron identificados dos temas: (1) Barreras para la comunicación sobre sexualidad, con cuatros subtemas (Inadecuada identificación de temas de sexualidad, baja autoeficacia para la comunicación sobre sexualidad, falta de profesionales capacitados y falta de herramientas o materiales adecuados para la comunicación sobre sexualidad); (2) Miedos y preocupaciones por la falta de comunicación sobre sexualidad. Conclusiones: Los padres reconocen los aspectos importantes que influyen en el tipo y la forma en que se abordan los temas sexuales, reduciéndose a la higiene personal y la masturbación, dejando de lado aquellos que implican mayor sensibilidad como el abuso sexual. Asimismo, los padres solo tocan los temas necesarios, conforme a la etapa de desarrollo del hijo.(AU)

Objective: To explore parents' perceptions in relation to communication about sexuality with their autistic children. Methodology: Qualitative, descriptive and exploratory study, which was developed in three care centers for autistic children and adolescents in the states of Baja California and Sinaloa, Mexico. Four mothers and one father of children/adolescents with Autism Spectrum Disorder participated and semi-structured interviews were used for data collection. The data were analyzed by means of the content analysis technique. Results: Two themes were identified: (1) Barriers to communication about sexuality, with four sub-themes (Inadequate identification of sexuality issues, low self-efficacy for communication about sexuality, lack of trained professionals, and lack of adequate tools or materials for communication about sexuality); (2) Fears and concerns about lack of communication about sexuality. Conclusions: Parents recognize the important aspects that influence the type and manner in which sexual topics are addressed, being reduced to personal hygiene and masturbation, leaving aside those that involve greater sensitivity such as sexual abuse, likewise, parents only touch on the necessary topics, according to the child's stage of development.(AU)

Socio-emotional repercussions of severe haemophilia A in the daily lives of children.

INTRODUCTION AND AIM: Haemophilia A, in its most severe form, can have serious repercussions, including issues that are physical, emotional, affective, and social, particularly in childhood. This qualitative study aims to understand the socio-emotional repercussions of severe haemophilia A in children, based on their own testimonies and subjective expressions of their daily lives, in the contexts of the family, school and health service. METHODS: Individual qualitative interviews were carried out using a playful approach through puppets with 15 children, aged 6-12 years old, in a service for the treatment of haemophilia, located in the northeast of Brazil. Data were analysed using inductive thematic analysis. RESULTS: Four themes were elaborated: (a) Reflecting how I am and how I relate to others; (b) Enjoying family moments; (c) Experiencing the school context: learning, affectivity and play; and (d) Dealing with haemophilia: acceptance and overcoming strategies. CONCLUSION: The experiences shared by children with severe haemophilia A and their daily needs should be the basis for guiding child-centred care. Encouraging self-care, including self-administration of the deficient factor, requires a partnership between health professionals, family members, school and child in the construction of therapeutic plans that consider the child's active participation.

Experience of hope: An exploratory research with bereaved mothers following perinatal death.

PROBLEM: The negative implications of perinatal death on mothers' mental health are documented, however little is known about their experience of hope. BACKGROUND: Within the broader literature, hope has contributed to better mental health and bereavement adjustment and often bereaved mothers report the importance of hope for the grieving process. AIM: This study aims to explore bereaved mothers' experience of hope following perinatal death. METHODS: Individual interviews were conducted with 33 mothers having experienced the death of an infant in the perinatal period. Data from the interviews were analysed using thematic analysis. FINDINGS: The mothers' experience of hope following perinatal loss is organized into three themes: Hope disrupted by perinatal loss; Transformed hope: a new pregnancy challenged by the sense of foreboding of another loss; and Ways to restore and foster hope in life. DISCUSSION: Although hope has been a motivating force for mothers to reconnect with their life plan and move on after a loss, it is also negatively affected by the experience of perinatal bereavement, social support, and health professionals' clinical practice. CONCLUSION: Bereaved mothers have reported a disruption in their experience of hope. While some experience a loss of hope or a sense of hopelessness, others experience a transformation and restoration of hope, which is reinvested in the grieving process. Mothers' experience of hope highlights the need for the support of a healthcare professional and may contribute to enhanced clinical practice through the promotion of bereavement care, considering the aspects that instil, maintain, and interfere with hope.

Pain Experience, Physical Function, Pain Coping, and Catastrophizing in Children With Sickle Cell Disease Who Had Normal and Abnormal Sensory Patterns.

CONTEXT: Sickle cell disease (SCD) is associated with recurrent pain that could lead to abnormal sensory patterns (ASPs). OBJECTIVES: The purpose of this study is to compare children with SCD who had normal sensory patterns (NSPs) and ASPs in pain experience, physical function, pain coping, and pain catastrophizing. METHODS: Children with quantitative sensory testing data were selected from a larger study that examined pain and symptoms in children with SCD. Comparisons were made between children with NSP (n = 35; 13.9 ± 1.9 years) and ASP (n = 13; 12.8 ± 1.9 years). Children completed the Adolescent Pediatric Pain Tool, Functional Disability Inventory, Pain Coping Questionnaire, and Pain Catastrophizing Scale. RESULTS: No significant differences were found in pain intensity (2.9 ± 3.0 vs. 2.6 ± 2.8 on 0-10 Visual Analogue Scale) between the NSP and ASP, respectively. The most common marked pain sites for both groups were lower extremities (22.9%), head and neck (20.8%), and upper extremities (20.8%). Functional Disability Inventory scores were significantly worse in ASP (38.5%) compared with NSP (11.4%). The ASP group had significantly worse scores in emotion-focused pain coping subscales. CONCLUSION: Children with SCD with ASP had worse functional disability, were expressing more affective pain quality, and had emotion-focused pain coping compared with NSP. Future studies are needed to examine the effectiveness of physical activities on the physical function as well as psychosocial interventions such as peer support and creative arts expression to minimize development of ASP in children with SCD.