The components of personal passports for people living with dementia in an acute healthcare setting: an integrative review.

AIM: To explore the components of personal passports for people living with dementia in an acute healthcare setting. BACKGROUND: Globally, supporting people with dementia poses a prominent health and social care challenge. Importance for people with dementia in an acute healthcare setting includes social relationships and communication with healthcare staff. A personal passport is an international initiative designed to support the personhood of the person living with dementia. METHODS: This integrative review is based on the methodology of Whittmore and Knafl (2005). The Preferred Reporting for Systematic Reviews and Meta-Analyses (PRISMA) guidelines and checklist were adhered to. A database search of PubMed, MEDLINE, CINAHL, Scopus and EBSCO databases was systematically performed. RESULTS: This integrative review identified nine research studies on the components of personal passports that met the inclusion and exclusion criteria. A constant comparative method of data analysis identified five key pivotal themes: person-centredness, communication, family/carer involvement, education and leadership. CONCLUSION: The use of personal passports supports the provision of person-centred care for people living with dementia through enhancing the well-being of both the person and their families/caregivers. RELEVANCE TO CLINICAL PRACTICE: Personal passports are an important document and should be determined by the person with dementia, their care needs and the caregiver's role in meeting these needs.

Family and healthcare professionals' perceptions of a pilot hospice at home programme for children: a qualitative study.

BACKGROUND: Parents commonly report a significant improvement in quality of life following the provision of hospice and supportive care and have identified a need for such a service in the home. The purpose of this study was to understand the experiences of families receiving a nurse led pilot hospice at home programme and the experiences of healthcare professionals delivering and engaging with the programme. METHODS: An exploratory, qualitative study was conducted, including telephone interviews with parents and focus groups and individual interviews with healthcare professionals. All parents of families who received the programme of care between June 2014 and September 2015 and healthcare professionals delivering and engaging with the programme were invited to participate. RESULTS: Seven parents participated in telephone interviews. Four focus groups took place, two with external stakeholders (18 participants in total), one with in-patient hospice staff (13 participants) and one with the hospice at home team (8 participants). Two additional interviews took place with individual stakeholders who were unable to attend a scheduled focus group. Themes from interviews with parents focused on the value of having consistent and expert care. The findings from healthcare professionals centred on communication within and across services, education and training and lone working. CONCLUSIONS: The pilot hospice at home programme was welcomed by all those who took part in the study. The programme may be improved by enhanced clarification of roles, enhanced access to multi-disciplinary services, greater communication across services and improved information provision to families.

Adaptation of a Voice-Centered Relational Framework to Explore the Perspective of Parents Who Have Transitioned to Home with a Child With Complex Care Needs.

Parents of children with complex care needs are generally willing to participate in research studies about their experiences; however, they are often challenged in their capacity to participate as they struggle to find time for family life. In our research with parents to explore their experience of transitioning to home, we deliberately sought an approach that would reduce the imposition on parents, while gaining insightful interpretations of their experiences. This article reflects on our experience of the process of discovering, analyzing, and interpreting parents' perspectives of their journey to home, when interviewed by telephone. Applying the voice-centered relational method of qualitative analysis, accounts from parents were explored by the research team using 4 perspectives: the plot and evaluator responses to the narrative; the voice of the "I"; relationships; and placing people within cultural contexts and social structures. Parents interviewed were very receptive to being interviewed by phone. We found that this enhanced their trust in the interview process and subsequently led to our ability to gather rich data. The use of multiple lenses of analysis gave insightful interpretations of their journey to home.

The Role of Care Coordinator for Children with Complex Care Needs: A Systematic Review.

INTRODUCTION: This systematic review seeks to identify the intended components of the role of care coordinator for children with complex care needs and the factors that determine its composition in practice. THEORY AND METHODS: The initial search identified 1,157 articles, of which 37 met the inclusion criteria. They were quality assessed using the SIGN hierarchy of evidence structure. RESULTS: Core components of the role include: coordination of care needs, planning and assessment, specialist support, emotional support, administration and logistics and continuing professional development. Influencing factors on the role include the external environment (political and socio-economic), the internal environment (organisational structure and funding protocols), the skills, qualifications and experience of the coordinator, the family circumstances and the nature of the interaction between the care coordinator and the family. DISCUSSION: The lack of consistent terminology creates challenges and there is a need for greater consensus on this issue. Organisations and healthcare professionals need to recognise the extent to which contextual factors influence the role of a care coordinator in practice and plan accordingly. Despite evidence that suggests that the role is pivotal in ensuring that care needs are sustained, there remains great variability in the understanding of the role of a care coordinator for this population. CONCLUSIONS: As the provision of care increasingly moves closer to home there is a need for greater understanding of the nature and composition of the interaction between care coordinators and families to determine the extent to which appropriate services are being provided. Further work in this area should take into consideration any potential variance in service provision, for example any potential inequity arising due to geographic location. It is also imperative, where appropriate, to seek the views of children with complex care needs and their siblings about their experiences.

Parents' perspectives of the transition to home when a child has complex technological health care needs.

INTRODUCTION: There is an increasing number of children with complex care needs, however, there is limited evidence of the experience of families during the process of transitioning to becoming their child's primary care giver. The aim of this study was to explore parents' perspectives of the transition to home of a child with complex respiratory health care needs. METHODS: Parents of children with a tracheostomy with or without other methods of respiratory assistance, who had transitioned to home from a large children's hospital in the last 5 years, were invited to participate in the interviews. Voice-centred relational method of qualitative analysis was used to analyse parent responses. RESULTS: Four key themes emerged from the interviews including "stepping stones: negotiating the move to home", "fighting and frustration", "questioning competence" and "coping into the future". DISCUSSION: There is a need for clear and equitable assessments and shared policies and protocols for the discharge of children with complex care needs. Direction and support are required at the level of health service policy and planning to redress these problems. This study provides evidence that the transition of children with complex care needs from hospital to home is a challenging dynamic in need of further improvement and greater negotiation between the parent and health service provider. There are tangible issues that could be addressed including the introduction of a standardised approach to assessment of the needs of the child and family in preparation for discharge and for clear timelines and criteria for reassessment of needs once at home.