Understanding How Bereaved Parents Cope With Their Grief to Inform the Services Provided to Them.

Our objective was to develop a rich description of how parents experience their grief in the first year after the death of their child, and how various bereavement follow-up and support services helped them during this time, with the aim of informing follow-up and support services offered to bereaved parents. Our findings situated parents' individual experiences of coping within the social and institutional contexts in which they grieved. In the first year after the death of their child, parents regulated their intense feelings of grief through loss-oriented, restoration-oriented, and/or meaning reconstruction strategies. Often, parents' relationships with others and many of the bereavement follow-up and support services helped them in this regard. This article also explores how the results may aid service providers in accompanying parents in a way that optimizes outcomes for these parents.

The psychosocial needs of students conducting research with patients and their families in advanced cancer and palliative care: A scoping review.

OBJECTIVE: The objective of this article was to explore the extent of the scientific literature and evidence base about the psychosocial needs of students conducting research in the fields of advanced cancer and palliative care. METHOD: A scoping review was conducted in major scientific databases. English-language articles on the topic of interest were retained if they were published in peer-reviewed journals between 1995 and 2013. RESULTS: A total of 3,161 references were screened, and 7 were retained for analysis. Only two articles were empirical studies involving the collection of primary empirical data. The remaining ones were commentaries and personal reflections. While there is a near absence of empirical research about the psychosocial needs of students, several commentaries suggest that students in this field have a high need for support. Three themes were identified in the limited literature retrieved: (1) the importance of proper training and supervision; (2) the availability of emotional support structures; and (3) the use of effective and deliberate self-care strategies. SIGNIFICANCE OF RESULTS: This scoping review demonstrates that little is known about the psychosocial needs of students conducting research in advanced cancer and palliative care. However, what is clear is that there is a large emotional impact on student researchers engaged in this type of work. Adequate training and support is needed to promote students' health and well-being, encourage retention of students, and foster high-quality studies. More empirical data are needed to better understand the experiences of students conducting this type of research and to ensure the sustainability of training and research in this field.

Assessment of Autism Spectrum Disorders in Children with Visual Impairment and Blindness: A Scoping Review.

There is a higher incidence of diagnosed Autism Spectrum Disorder (ASD) in children with visual impairment and blindness (VIB) than in typically sighted children. However, we currently lack appropriate assessment measures to fully understand the neurodevelopment of children with VIB. Numerous factors, such as common characteristics between children with VIB and ASD and the reliance of visual behaviours in assessments of ASD, complicate the clinical and diagnostic understanding of these children. This scoping review aims to describe the published knowledge on ASD assessment in children with VIB. The literature search was performed through MEDLINE, PsycINFO and Scopus. Reference lists of pertinent articles were scrutinized for snowball searching. Articles retained were based on original empirical studies, were relevant to or conducted with children or adolescents with VIB and described assessments for ASD. Pertinent information was extracted, and a thematic analysis was performed. Only 13 articles retrieved pertained to and described the assessment of ASD in children with VIB. The following themes emerged: appropriateness of commonly used ASD assessment tools for children with VIB, modification of pre-existing ASD assessment tools for a better assessment, creation of new assessment tools for this population, time points of assessment, and professional training and practice guidelines. The reviewed literature highlights that there is still much work to be done to better understand the complex relationship between VIB and ASD, and consensus is needed on how best to go about assessing neurodevelopmental disorders in children with VIB.

Pediatric palliative care in Canada and the United States: a qualitative metasummary of the needs of patients and families.

OBJECTIVE: Qualitative research is becoming more common in pediatric palliative care and end-of-life care. The present article systematically reviews and summarizes qualitative and survey-based research on pediatric palliative and end-of-life care pertaining to the needs of patients and their families. METHOD: Twenty-one qualitative and survey-based studies published between 2000 and 2010 that met the selection criteria were retrieved from MEDLINE, PsycINFO, and CINAHL. All studies reported on the needs of patients and families receiving pediatric palliative and end-of-life care--from either the patient's, parent's, sibling's, or health care provider's perspective. Findings from these studies were aggregated using a metasummary technique. RESULTS: Findings were extracted and grouped into the following 10 thematic domains pertaining to patient and family needs: interactions with staff, health care delivery and accessibility, information needs, bereavement needs, psychosocial needs, spiritual needs, pain and symptom management, cultural needs, sibling's needs, and decision making. CONCLUSIONS: The results of this metasummary highlight the needs of patients and families to be taken into consideration in the creation of high-quality pediatric palliative and end-of-life care services and guidelines.

Patients' perspective on factors that facilitate transition from child-centered to adult-centered health care: a theory integrated metasummary of quantitative and qualitative studies.

PURPOSE: The purpose of this review was twofold. First, to summarize systematically the state of the research conducted on the perspective of patients on transition from child-centered care to adult-centered care (ACC). Second, based on this review of patients' perspective, to identify factors that facilitate transition to ACC. METHODS: Using a metasummary methodology, we extracted, grouped, and abstracted the findings from 46 qualitative and descriptive quantitative studies involving patients before and/or after their transfer to ACC. RESULTS: Empirical results on transition fall into four groups: (1) patients' feelings and concerns; (2) patients' recommendations about transition; (3) outcomes after transfer; and (4) mode of transfer. CONCLUSIONS: Results are discussed within a theoretical transition framework that emphasizes the importance of fulfilling five conditions that will lead to successful transition. Given our findings, this synthesis and framework can be used to tailor transition care and direct future research.