Lily's Story: STAR Syndrome.

BACKGROUND: Lily was born 7 years ago with an illness that did not have a name; she had only a constellation of anomalies. The hope of happiness that most parents experience when expecting a baby was lost halfway through my pregnancy when we heard the words "survival" and "termination of the pregnancy." Lily did survive and has taught us, her parents, and members of her medical team the meaning of courage and collaboration. PURPOSE: This article describes our journey. Today that lesson has blossomed into a patient/parent/family engagement program changing the culture of healthcare and the future for hospitalized infants. IMPLICATIONS FOR PRACTICE: We share our story so that others might learn from our experiences. Hope and survival are so important to parents and families and health professionals need to be aware that taking away hope can devastate a family. IMPLICATIONS FOR RESEARCH: More research is needed about when a baby who was expected to die lives anyway and how that experience can best be supported for families. This is an area where the experience is unique and little is really known.

Food choice by people with intellectual disabilities at day centres: A qualitative study.

People with intellectual disabilities experience a range of health inequalities. It is important to investigate possible contributory factors that may lead to these inequalities. This qualitative study identified some difficulties for healthy eating in day centres. (1) Service users and their family carers were aware of healthy food choices but framed these as diets for weight loss rather than as everyday eating. (2) Paid carers and managers regarded the principle of service user autonomy and choice as paramount, which meant that they felt limited in their capacity to influence food choices, which they attributed to the home environment. (3) Carers used food as a treat, a reward and for social bonding with service users. (4) Service users' food choices modelled other service users' and carers' choices at the time. It is suggested that healthy eating should be made more of a priority in day care, with a view to promoting exemplarily behaviour that might influence food choice at home.

Engaging patients and families in system-level improvement: a safety imperative.

Health care organizations have focused considerable effort and resources on improving patient safety and health care quality. Yet, despite these efforts, patients continue to experience harm events within our institutions. Family engagement is a powerful and often untapped resource to improve the quality and safety of organizations. While the value patients and families bring as partners in improving the safety and quality of health care is implicitly recognized, the adoption of structures to actively involve health care consumers has been slow, particularly in organizational or overall system work. Patients and families can stimulate and drive improved health care services through their involvement at the clinical/point of care, policy/design, and governance levels of the organization. For successful implementation, organization leaders must establish family engagement as a system-level priority. Roles to support the development of a family engagement program, methods to evaluate the level of family engagement, and strategies to enhance and sustain family engagement are described. Although there is limited evidence-based knowledge related to the best practices for family engagement, opportunities exist to drive the family engagement agenda at a regional and national level through participation in networks such as the Centers for Medicare & Medicaid Services Partnership for Patients campaign Hospital Engagement Networks.