August 2018 List

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August 2018 List

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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Collection Items

Background: While work with adolescent in Paediatric Palliative Care we need to notice their development (psycossocial and cultural). The adolescence it is characterized by social questions, where the adolescent need to belong to some group and their…

In 2002, The Netherlands continued its leadership in developing rules and jurisdiction regarding euthanasia and end-of-life decisions by implementing the Euthanasia Act, which allows euthanasia for patients 12 years of age and older. Subsequently, in…

When a child dies in the intensive care unit, many bereaved parents want relationships with their child's health care staff to continue in the form of follow-up care. However, the nature of these relationships and how they change across the parents'…

BACKGROUND: This study explored mothers' perspectives of the experiences and impact on themselves and their family when their child has a life-limiting neurodevelopmental disability. METHODS: Twelve mothers were interviewed and topics included…

Background: Advance care discussions (ACD) between health care professionals (HCPs) and parents of children with a life-limiting disease are a core element to successful pediatric advance care planning (pACP). Yet, they are considered as challenging…

Description: Thousands of children in the United States die each year and many more live with illnesses which reduce their quality of life and contribute to suffering. Pediatric palliative care is the specialized medical care of children living with…

A high prevalence of sleep problems exists in children and adolescents with life-limiting conditions (LLC) and severe psychomotor impairment (SPMI). This study aimed to compare the impacts of various child-related (pain, epilepsy, repositioning,…

PURPOSE: To explore how nurses manage personal and professional boundaries in caring for seriously ill children and their families., DESIGN AND METHODS: Using a constructivist grounded theory approach, a convenience sample of 18 registered nurses…

AIM: To understand parents' experiences and needs during a child's end-of-life care at home and to identify systemic factors that influence its provision. BACKGROUND: A child's end-of-life phase is an extremely difficult time for the whole family.…

OBJECTIVE: To assess the influence of resiliency and stress on parental perspectives of the future quality of life (QOL) of neonatal intensive care unit (NICU) newborns at high risk of neurodevelopmental disability. STUDY DESIGN: We conducted a…

Fear of pain plays an important role in the maintenance of chronic pain. It may be reduced through exposure therapy. This 2-arm parallel samples, randomized controlled trial aimed to investigate whether interoceptive exposure (IE) therapy enhances…

Background/aim: Pediatric Palliative Care (PPC) in hospitals mainly focuses on the parents and siblings of children suffering from a life limiting disease. However, most grandparents are also highly involved in the caring of the child and require…

Music can play an important role in the lives of many young children in Australia, however the ways in which music is used, understood and engaged with can vary significantly from child to child, and family to family, dependent upon factors such as…

Background The literature reviews show that taking care of dying newborns for a nurse is associated with stress and anxiety, and nurses will be faced with many challenges, the present study aimed to explain the spiritual challenges experienced by…

Music enables us not only to reflect upon the world in which we live but also to become active agents in creating and shaping it and ourselves. The Treehouse Choir is an innovative, therapeutic programme open to all adult service users and staff at…

Description: The Affordable Healthcare Act Section 2302 is a provision that changed the eligibility of children with life-limiting conditions to receive hospice-like services and thus created concurrent care programs. In California, there was…

Background: Inpatient hospice care (IHC) for adults in Germany is used in the last weeks of life. Children, adolescents and young adults (ACA) with life-limiting diseases are entitled to 28 days/year of IHC during their lifetime. We explored various…

Introduction To discuss the extended family support that is required in children's palliative care, focusing on Grandparents, who sometimes may be seen as the 'forgotten mourners'. Objectives Utilizing art psychotherapy in a group setting to…

Background: Approximately, 300 children die in Denmark every year. In order to support future implementation of specialized pediatric palliative care the aim of this study was to investigate the needs, quality of life and severity of distress of…

PURPOSE: To qualitatively explore neonatal intensive care nurses' experiences with end-of-life photography as part of their bereavement support work with families. DESIGN AND METHODS: An Interpretive Phenomenological Analysis with data collected…

BACKGROUND: Education sessions about palliative care among teenagers are uncommon in developed countries. However, very little is known either about the impact of this type of intervention or about how this age-group perceives its impact. The purpose…

Description: Background: Pediatric palliative care is an interdisciplinary service that works to enhance the quality of life for children with serious illness. Unfortunately, the need for palliative care is difficult to ascertain and is often…

Introduction: Advancement in medical science and better health care has led to increased survival of children with complex neurodisability (cerebral palsy, neuromuscular, neuro-metabolic, and genetic disorders). Paediatric palliative care has…

In Germany, every child with a life-limiting condition suffering from symptoms that cannot sufficiently be controlled is eligible by law for specialized pediatric palliative home care (SPPHC). It is the aim of this study to describe the demographic…

AIM: Medical providers may face unique emotional challenges when confronted with the suffering of chronically ill, dying, and bereaved children. This study assessed the preliminary outcomes of participation in a group-based multimodal mindfulness…

Background/aims: Undertaking research with children and young people (CYP) with life-limiting conditions (LLC) and life threatening illnesses (LTI) is challenging. Previous research has highlighted barriers, such as obtaining ethics approval and…

Description: Improving Familiarity with Pediatric Palliative Care Among Pediatric and Internal Medicine-Pediatric Residents. Objectives: To increase familiarity with and comfort level in providing pediatric palliative care in inpatient and outpatient…

Research aim: The main aim was to describe the needs of parents caring for a terminally ill child during the course of the illness, the time of dying, and after the death of the child. Secondary aim was to identify the risk factors occurring during…

The number of children with life-limiting or life-threatening conditions in England is double what it was at the millennium. These conditions include cystic fibrosis, cancer, organ failure and severe neurological injuries. The Teaching for Life…

Introduction: In Italy there are approximately 12000 children affected by life-limiting illnesses, which require palliative care services. The national reality, however, confirms the lack of a proper palliative care services network to ensure relief…

Background: Families caring for a child with a life limiting condition not only provide 24 hour complex care but also must care for siblings and cope with everyday tasks. Research suggests families could benefit from 'domestic support' (Fraser et al,…

BACKGROUND: In 2017, the Ohio Pediatric Palliative Care and End-of-Life Network (OPPEN) published nine domains of high-quality care for pediatric home-based hospice and palliative care (HBHPC). Eight domains established by the National Consensus…

The article outlines the benefits of palliative care supporting the child and family with attention to individualized symptom management, improved communication, and support making difficult decisions. Topics mentioned include the research program…

Description: Purpose: The Little Lights program is a novel, collaborative, nursing-led bereavement photography service created as a solution to the challenge of providing consistent high-quality bereavement photography for families and their dying…

AIM: To describe the clinical course for children with severe physical disability (SPD) in the 2 years prior to their death and to identify whether these children had palliative care involvement and advance care planning prior to death. To…

The national nursing shortage translates into a gap in home nursing care available to children with complex, chronic medical conditions and their family caregivers receiving palliative care consultations. A total of 38 home health nursing surveys…

CONTEXT: According to the International Observatory on End of Life Care, the level of pediatric palliative care in Japan is Level 2 (capacity building) and the current status of palliative care for children in Japan has not been clarified.…
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