Journal article

Objective: We evaluated whether educational material about hydrocephalus and its treatment previously developed by health professionals corresponded with the daily life of caregivers of children with hydrocephalus.

Methods: We conducted a qualitative study at a university hospital in Brazil, interviewing 32 informal caregivers of children with hydrocephalus. The methodological framework of Bardin content analysis was used to analyze the data. 

Patients and their families have expressed that they want information (Hendricks, 2000) and as a result often turn to Google for health and medical information. Society as a whole is more informed than ever and no longer rely only on medical practitioners as in previous generations. Instead, and rightly so, they question medical experts and want to know the reasoning and rationale behind everything they experience. This combined with the shift towards family-centred principles over the last 20 years underscores the need to provide comprehensive and effective education to families.

Background/objectives: The effect of pediatric psoriasis on quality of life has been demonstrated, but data regarding its influence on caregiver quality of life are scarce. The objective was to investigate how psoriasis affects quality of life of children and their caregivers.;

Although stigma related to developmental disorders (DD) has been associated with poor mental health among caregivers, an in-depth understanding of factors that influence internalisation of stigma by caregivers is missing. The aim of our study was to explore perceptions and experiences of stigma among parents of children with DD in Ethiopia and examine the contributing and protective factors for internalised stigma based on the perspectives of the parents themselves.

Background: In Ethiopia, stigmatising attitudes towards people living with HIV have reduced over time. This is mainly due to improved HIV knowledge and the expansion of access to HIV care and support services. However, HIV stigma and discrimination remain a key challenge and have negative impacts on access to and utilisation of HIV services including nutritional programs in the HIV care setting. A small number of studies have examined the experience of stigma related to nutritional programs, but this is limited.

This research is a qualitative study of the spiritual needs and practice of chronically ill children and their families in the Isan region of Thailand. The purposive sampling was 17 chronically ill children aged 10–18 years old and primary caregivers. Three instruments were used: a questionnaire, in-depth interview with questions adapted from the Spiritual Assessment Scale (SAS) by O'Brien, and non-participant observation. Field note-taking and voice recordings were used for data recording. Triangulation was used before analysis to test for credibility.

Background: To design high-quality home-based hospice and palliative care (HBHPC) systems, it is imperative to understand the perspectives of parents whose children enroll in HBHPC programs.

An abstract of a study by Thienprayoon et al understanding the long-term implications and decision-making complexities surrounding tracheostomy placement and permanent mechanical ventilation, including caregiver burden of tracheostomy care and potential for limited community resources is presented. The decision to place a tracheostomy tube in a child who will be ventilator-dependent for the duration of her life is complex.

Background: The influence of parental psychopathology and parental expectations on child well-being is well documented among typically developing populations. However, to date little research has examined the relationship among these factors in families of children with autism spectrum disorder (ASD).

Purpose: to know the family interaction with the hearing impaired child/adolescent.