"A complex interface: Exploring sickle cell disease from a parent's perspective, after moving from Sub-Saharan Africa to North America".

INTRODUCTION: Sickle cell disease (SCD) is an inherited, multi-system, chronic disease with the highest prevalence affecting people of Sub-Saharan African descent. While major advances in SCD care have occurred over the last few decades in many African countries these advances are not readily available. Prior literature from Ghana and Kenya describe stigma, despair, and economic burden as well as hope when a child has SCD. When people migrate to North America with a child with SCD it is unknown whether their perception of the disease changes. We asked, "How do immigrant parents of children with SCD from Sub-Saharan Africa perceive, and manage the disease in the context of western medical care?" METHODS: The research question was explored with qualitative methodology, specifically focused ethnography. Semi-structured interviews were conducted with parent(s). The interviews were audio recorded, transcribed, and open coded. Rigor was determined through methodological coherence, appropriate and sufficient sampling, and iterative data collection and analysis. RESULTS: Twelve interviews were conducted. Identified themes are as follows: memories of SCD in Africa, the emotional journey towards acceptance, and parental approach to care for their child. CONCLUSIONS: Healthcare providers should be responsive to an immigrant families' needs and not expect linear progression of emotional acceptance to the diagnosis. Healthcare providers patience with the process helps establish trust, works to facilitate and encourage hope and acknowledges the strength of the families, and their dedication to their family member. Healthcare providers should acknowledge parents' sources of support (religion/family) and ensure parents are aware of medical advances.

Nutrition Care in Patients With Head and Neck or Esophageal Cancer: The Patient Perspective.

BACKGROUND: Patients with head/neck or esophageal (HNE) cancer are likely to develop malnutrition throughout the course of their disease and its treatment. Although nutrition care is considered a cornerstone of disease management, clinical practices to treat malnutrition vary. The objective of this qualitative study is to understand the patients' experiences with nutrition care in the context of their treatment and recovery. METHODS: A descriptive qualitative study design was used to explore patients' experiences. Ten patients with head and neck (HN) cancer and 10 patients with esophageal cancer were interviewed near the completion of their cancer treatment using a semistructured interview guide. The data sets were analyzed separately using qualitative content analysis. The preliminary findings from each data set were compared and contrasted; 3 themes that crossed both data sets were identified. RESULTS: Three themes were identified: (1) coping with physical and psychosocial aspects of illness and nutrition; (2) understanding the nature of the illness, treatment, and nutrition pathway; and (3) being supported during the trajectory of care. The major differences between HN and esophageal groups were identified in the context of understanding and being supported: the lack of coordination throughout the trajectory of care and conflicting messages from healthcare providers were a source of uncertainty, confusion, and isolation in the HN group. The need for timely and ongoing patient-focused nutrition care, with formal and informal support, was identified in both groups. CONCLUSION: Models for nutrition care should support provision of consistent information across health professionals and throughout the treatment trajectory.