Abstract
Patient and public involvement in healthcare is important to ensure services meet their needs and priorities. Increasingly, patient experiences are being used to educate healthcare professionals. The potential contribution to medical…
BACKGROUND:
Service providers face difficult decisions about how best to develop services for the increasing numbers of young people with life-limiting conditions who require palliative care.
OBJECTIVE:
To explore alternative short break and…
Pediatric palliative care is an evolving field of practice in social work. As such, research plays a critical role in informing best social work practices in this area. For parents, caring for a child with a life-limiting illness (LLI) is a stressful…
A new group of medically fragile young adults are graduating from pediatric palliative care programs with limited expectations to live beyond early adulthood, and no comparable adult services to support their complex needs. Accessing this population…
Insufficient training of health professionals has often been cited as a major barrier to improving the system of care for dying patients and for the bereaved. Although specific problems have been identified for physicians and nurses, the problems of…
PURPOSE: To explore and describe the health-related, help-seeking behaviors of young female Mexican-American adolescents. DESIGN: Qualitative exploratory-descriptive design using focus groups. SETTING: Community recreation centers. PARTICIPANTS: 18…
OBJECTIVE: Needs assessment is a critical part of the design and implementation of telehealth projects. This study assessed the need for a telehealth link between a local community and a tertiary-care medical center. METHODS: The assessment was…
Collaboration between local public health agencies and university schools of nursing can be advantageous to both parties. Students need opportunities to learn aggregate-based care; health officers need community partnerships that expand their…
OBJECTIVES: Patients' views of physician skill in providing end-of-life care may vary across different diseases, and understanding these differences will help physicians improve the quality of care they provide for patients at the end of life. The…
Caring for a child with cancer is a demanding experience for both parents, yet most research focuses on mothers. In this paper, we present the findings of a secondary analysis of data from a study in which the care-giving experience of fathers is…
There is much anxiety regarding the transfer of adolescents with chronic illness to adult services. Transfer of patients can be haphazard if the transition has not been planned. Problems and obstacles to transition have been identified and discussed…
OBJECTIVE: This study examined the process of health care transition (HCT) posing the following questions: What are the transition experiences of youths and young adults with disabilities and special health care needs, family members, and health care…
Child and family involvement is key to improving the quality of children's hospice services. This article reports on a quality assurance initiative undertaken as one component of a clinical governance strategy. Service users participated in focus…
A longitudinal feasibility study regarding quality of life and interventions for patients with advanced cancer or AIDS and their family caregivers was conducted to determine issues related to their recruitment and retention and to obtain pilot data…
The objective of this study was to provide a preliminary description of trajectories of life-limiting conditions (LLCs) using qualitative experiential data. Semi-structured interviews were conducted with families of children with LLCs, selected to…
BACKGROUND: The purpose of this article is to describe and evaluate the methodology of online focus group discussions within the setting of paediatric oncology. METHODS: Qualitative study consisting of separate moderated asynchronous online…
The Delphi process, widely used in health research to seek consensus on key issues amongst large stakeholder groups, was adopted to allow families, hospice staff/volunteers and linked professionals to identify and prioritize future research…
The main objective of this study is to generate a list of priority topics for children's hospice care research in Scotland from the perspective of its key stakeholders. The method consists of qualitative semi-structured interviews with families using…
OBJECTIVE: To explore the end-of-life experience of children with brain tumors and their families. DESIGN: Qualitative analysis of focus group interviews. SETTING: Children's Hospital, London Health Sciences Center. PARTICIPANTS: Twenty-five parents…
Children with life limiting conditions and their families have complex needs. Evaluations must consider their views and perspectives to ensure care is relevant, appropriate and acceptable. We consulted with children, young people, their parents and…
BACKGROUND: The provision of emotional and psychological support for all family members who need it is an essential element of holistic palliative care. Within East Anglia's Children's Hospice, teams of professionally trained and experienced workers…
BACKGROUND: Pediatric patients experience significant symptoms during cancer treatment. Symptom management is frequently inadequate. We studied perceptions of pediatric oncology care providers regarding early integration of palliative care (PC) for…
BACKGROUND: Use of Web 2.0 and social media technologies has become a new area of research among health professionals. Much of this work has focused on the use of technologies for health self-management and the ways technologies support communication…
AIMS: To explore the lived experience of caring and care planning for a child with a life-limiting condition (LLC). METHOD: Using van Manen's conceptualisation of hermeneutic phenomenology, three focus groups were conducted with 21 paediatric…
Hospice has been pivotal to children's palliative care provision in the United Kingdom (UK) for more than 3 decades. Some hospices have recently expanded to include care of infants transferred from neonatal units as well as antenatal referrals.…
Objective: To describe the experiences lived by mothers facing the death of their children. Method: A qualitative, exploratory and descriptive research conducted in Guarapuava-PR, with six participants of the "Marias" group that brings together…
Background: Oral morphine is frequently used for breakthrough pain but the oral route is not always available and absorption is slow. Transmucosal diamorphine is administered by buccal, sublingual or intranasal routes, and rapidly absorbed. Aim(s):…
Children's hospices are key players in the provision of palliative care services for families with children with life-limiting conditions (LLCs). However, evidence suggests that some of the negative terminology/language which surrounds the notions of…
Background and Objectives: Working in pediatric and neonatal intensive care units (ICUs) can be challenging and differs from work in adult ICUs. This study investigated for the first time the perceptions, experiences and challenges that healthcare…
High quality pediatric homecare requires comprehensive assessment of the needs, supports, and health care challenges of children with special healthcare needs and their families. There is no standardized homecare assessment system to evaluate…
BACKGROUND: Palliative care principles are known to support the experiences of children and their families throughout the illness trajectory. However, there is little knowledge of the parental perceptions of care delivered and gaps experienced by…
Transitional care for young people with long-term conditions emphasizes the importance of supporting parents, particularly in relation to promoting adolescent healthcare autonomy. Yet, little practical guidance is provided, and transitional care…
Background/Aims There is a paucity of literature on the impact of baby loss experiences on family and staff. This study aimed to explore existing support available to families and staff in a UK hospital for first trimester miscarriage, as well as…
This qualitative study used focus groups to identify the differences and similarities in the experiences of parents of children with a disability. Two main themes emerged, showing the ways in which the mothers and fathers are alike or different. One…
The changes that parents face when caring for a child with a life-limiting condition at home can affect them on a spiritual level. Yet, indications remain that parents do not feel supported when dealing with spiritual issues related to caring for a…
