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Spiritual needs and communicating about death in nonreligious theistic families in pediatric palliative care: A qualitative study

Background: Spiritual support should be offered to all patients and their families regardless of their affiliated status with an organized religion. Aim: To understand nonreligious theistic parents’ spirituality and to explore how parents discuss death with their terminally ill children in mainland China. Design: Qualitative study. Setting/participants: This study was conducted in the hematology oncology center at Beijing Children’s Hospital. Participants in this study included 16 bereaved parents.

Thu, 01/19/2023 - 17:41

Affiliate Stigma and Psychosocial Adaption Among Adolescents Who Have a Parent With Serious Mental Illness: Mediation Role of Family Cohesion

Aim: The current cross-sectional study examined the relationship between affiliate stigma and externalizing and internalizing problems by investigating the role of family cohesion among adolescents having a parent with serious mental illness (SMI). Method: One hundred sixty-four adolescents were recruited from two community mental health centers. Family cohesion, affiliate stigma, and adolescent internalizing and externalizing problems were assessed.

Thu, 01/19/2023 - 17:35

The Long Road to Farewell: The Needs of Families With Dying Children

Background: Families of dying children are profoundly impacted by numerous interactions with health-care providers before, during, and after their child's death.

Thu, 01/19/2023 - 17:29

Sleep disturbance and sleep insufficiency in primary caregivers and their children with cystic fibrosis

Background: Chronically ill children and their parents are at risk for sleep disorders and associated morbidity. Sleep disturbance prevalence and the relationships between parent and child sleep among children with CF are not well defined. Clarifying the presence and impact of sleep disturbances among pediatric CF patients and their parents could lead to improved health in this population. Methods: Cross-sectional study assessing parent-reported sleep in ninety-one CF patients (mean age 8.8 years; 53.8% female) and their primary caregivers.

Thu, 01/19/2023 - 17:25

Falling through the gaps: how should HIV programmes respond to families that persistently deny treatment to children?

Introduction: Children living with HIV rely on adult caregivers for access to HIV testing and care, including clinical monitoring and adherence to treatment. Yet, many caregivers confront barriers to ensuring children's care, including fear of disclosure of the child's or the parents' HIV status, competing family demands, fluctuating care arrangements and broader structural factors such as entrenched poverty or alternative beliefs about HIV's aetiology and treatment.

Thu, 01/19/2023 - 17:20

Quality of life and challenges of family members of children with meningomyelocele

Objective: To identify the main challenges of the family of a child with meningomyelocele (MMC) and correlate the Zarit Burden Interview (ZBI) scale with the World Health Organization Quality of Life-BREF (WHOQOL - BREF). Methods: Questionnaires were sent through an online platform to groups of parents and caregivers of children with MMC. Four WHOQOL-BREF domains were evaluated: physical, psychological, social and environmental.

Thu, 01/19/2023 - 17:16

Support for Fathers of Children With Heart Defects

Purpose: The purpose of the study was to illuminate the meanings of the lived experiences of support as disclosed by fathers of children with congenital heart defect (CHD). Narrative interviews were conducted individually with five fathers of children diagnosed with CHD. Methods: A phenomenological-hermeneutic method was used to interpret the verbatim transcribed narrative interviews.

Thu, 01/19/2023 - 17:04

Translation and Testing of the Swedish Version of Iceland-Family Perceived Support Questionnaire With Parents of Children With Congenital Heart Defects

Background: There is a need for a suitable instrument for the Swedish context that could measure family members' perceptions of cognitive and emotional support received from nurses. The purpose of this study was to translate and test the psychometric properties of the Swedish version of the Iceland-Family Perceived Support Questionnaire (ICE-FPSQ) and, further, to report perceptions of support from nurses by family members of children with congenital heart defects (CHDs).

Thu, 01/19/2023 - 17:00

The experiences of family carers in the delivery of invasive clinical interventions for young people with complex intellectual disabilities: policy disconnect or policy opportunity?

Aims and Objectives: To explore the experiences of family carers in the delivery of invasive clinical interventions within community settings. Background: Many young people with intellectual disabilities present with complex health needs and require clinical interventions to sustain life.

Wed, 01/18/2023 - 16:19

The social ecology of aggression in youths with autism spectrum disorder

Aim: This study examined the social-ecological correlates of aggressive behavior in 120 youths with autism spectrum disorder. Methods: Youths were divided into three groups based on caregiver reports of the youth's aggressive acts: youths who engaged in acts of both physical and verbal aggression, youths who engaged only in acts of physical aggression, and nonaggressive youths.

Wed, 01/18/2023 - 15:23

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