Primary caregivers, healthcare workers, teachers and community leaders' perceptions and experiences of their involvement, practice and challenges of disclosure of HIV status to children living with HIV in Malawi: a qualitative study.

BACKGROUND: The World Health Organisation has recommended that healthcare workers, teachers and community leaders work with parents to support children living with HIV. The aim of this study was to assess the perceptions and experiences of primary caregivers and other care providers such as healthcare workers, teachers, and community leaders regarding their involvement, practice and challenges of HIV disclosure to children aged between 6 and 12 years living with HIV in Malawi. METHODS: Twelve focus group discussions and 19 one-on-one interviews involving a total of 106 participants were conducted in all three administrative regions of Malawi. The interviews and focus group discussions explored perceptions and experiences regarding involvement, practice and challenges of disclosure of HIV status to children. Data were analysed using thematic analysis. RESULTS: Primary caregivers, healthcare workers, teachers, and community leaders all reported that the disclosure of HIV status to children was not well coordinated because each of the groups of participants was working in isolation instead of working as a team. A "working together" model emerged from the data analysis where participants expressed the need for them to work as a team in order to promote safe and effective HIV status disclosure through talking about HIV, sharing responsibility and open communication. Participants reported that by working together, the team members would ensure that the prevalence of HIV disclosure to young children increases and that there would be a reduction in any negative impact of disclosure. CONCLUSION: Global resources are required to better support children living with HIV and their families. Healthcare workers and teachers would benefit greatly from training in working together with families living with HIV and, specifically, training in the disclosure process. Resources, in the form of books and other educational materials, would help them explain HIV and its effective management to children and families.

Barriers to Addressing Social Determinants of Health in Pediatric Nursing Practice: An Integrative Review.

PROBLEM: Despite a substantial body of knowledge regarding the importance of the social determinants of health, recognizing and responding to the psychosocial circumstances of seriously and chronically ill children and their families is not well established in routine pediatric nursing care. ELIGIBILITY CRITERIA: The search process focused on psychological and social determinants and care in the healthcare setting. Searches were limited to research and review publications written in the English language. The quality of evidence was graded using the National Health and Medical Research Council evidence hierarchy. RESULTS: Thirteen publications were identified for inclusion. Healthcare providers do recognize emotional distress experienced by patients, but feel unable to address psychosocial issues due to the lack of time, a lack of confidence in their own communication skills, and the perception that patients and their families prioritize physical care over psychosocial care. For patients and their families the main issue was that the healthcare system was focused on physical care with little opportunity to talk about psychosocial concerns. CONCLUSIONS: The greatest barrier to addressing the social determinants of health in the pediatric context is the dominance of the 'medical model' of care. Also, many healthcare providers believe that they lack the communication skills necessary to talk about psychosocial issues. IMPLICATIONS: The way forward will be to empower nurses through the sharing of knowledge of the social determinants of health, the development of skills in relationship building and therapeutic communication, and the mentorship of compassionate family-centered care.

Rethinking family-centred care for the child and family in hospital.

AIMS AND OBJECTIVES: This paper presents and discusses an alternative model of family-centred care (FCC) that focuses on optimising the health and developmental outcomes of children through the provision of appropriate support to the child's family. BACKGROUND: The relevance, meaning and effectiveness of FCC have been challenged recently. Studies show that parents in hospital often feel unsupported, judged by hospital staff and uncertain about what care they should give to their child. With no convincing evidence relating FCC to improved child health outcomes, it has been suggested that FCC should be replaced with a new improved model to guide the care of children in hospital. DESIGN: This integrative review discusses theory and evidence-based literature that supports the practice of an alternative model of FCC that is focused on the health and developmental outcomes of children who are seriously ill, rather than the organisational requirements of children's hospitals. METHODS: Theories and research findings in a wide range of disciplines including epidemiology, psychology, sociology, anthropology and neuroscience were accessed for this discussion. Nursing literature regarding partnership building, communication and FCC was also accessed. DISCUSSION: This paper discusses the benefits of applying a bioecological model of human development, the family and community resource framework, the concepts of allostatic load and biological embedding, empowerment theory, and the nurse-family partnership model to FCC. CONCLUSION: While there is no direct evidence showing that the implementation of this alternative model of FCC in the hospital setting improves the health and developmental outcomes of children who are seriously ill, there is a great deal of evidence from community nursing practice that suggests it is very likely to do so. RELEVANCE TO CLINICAL PRACTICE: Application of these theoretical concepts to practice has the potential to underpin a theory of nursing that is relevant for all nurses irrespective of the age of those they care for and the settings within which they work.

Development of a measure for maternal confidence in knowledge and understanding and examination of psychosocial influences at the time of a child's heart surgery.

PURPOSE: The purpose was to develop a maternal confidence in knowledge and understanding scale (Maternal Knowledge and Understanding Scale [MKUS]) and examine the effect of psychosocial factors at the time of a child's heart surgery. DESIGN AND METHODS: Using cross-sectional design, the MKUS was developed and tested. Validated instruments were used to examine the impact of psychosocial factors. RESULTS: The MKUS showed acceptable internal consistency (Cronbach's alpha .78). Higher levels of maternal anxiety and lower levels of social support were associated with lower MKUS scores (p < .05). PRACTICE IMPLICATIONS: A measure of maternal confidence in knowledge and understanding could draw attention to psychosocial factors and opportunities to enhance nursing support.