Jayne Price

Living through the death of a child: A qualitative study of bereaved parents’ experiences

DESIGNnCross-sectional qualitative study.nnnDATA SOURCESnInterviews with purposeful sample of 25 recently bereaved parents.nnnMETHODSnSemi-structured in-depth interviews.nnnRESULTSnFour analytically distinct processes were identified in the responses of parents to the death of a child. These are referred to as piloting, providing, protecting and preserving. Regardless of individual circumstances, these processes were integral to all parents coping, enabling an active doing for their child and family throughout the trajectory of their childs illness and into bereavement.nnnCONCLUSIONSnFacilitating the capacity of parents to do is central to coping with the stress and uncertainty of living through the death of a child. The provision of informational, instrumental and emotional support by health care professionals in the context of doing is core to quality palliative care.

A consensus for change: parent and professional perspectives on care for children at the end-of-life.

The objective of this study was to investigate health and social care professionals perspectives on developing services for children with life limiting conditions at the end-of-life using issues identified by bereaved parents as priorities. The study adopted qualitative methodology using nominal group technique in focus groups (nu2009=u20095) to collect data from 35 health and social care professionals. Six issues were identified across professional groupings as particularly challenging within the context of caring for children at the end-of-life: truth telling; symptom management; communication with, and relationships between families and professionals; emotional impact, the withdrawal of feeding or treatment and sibling support. Strong resonance was noted between professionals and parents in the emphasis placed on issues related to talking about death (to child and siblings) and decision-making about the withdrawal of treatment. Conversely, late referral to hospice care and lack of services in the community dominated accounts of parents whose children had non malignant conditions, but were not prioritized by professionals. Although the latter focused on the need for and challenges associated with optimizing symptom management, most parents viewed symptom control as highly effective. Caring for a dying child is a multidimensional experience for both parents and professionals. Convergence of thinking carries three main implications for service development. Firstly, the need for “joined up” palliative care services, particularly concerning timely referral to the range of support services. Secondly, more structured bereavement services. Third, within an ethos of family centered care, needs of siblings should be addressed effectively.

The challenge to health professionals when carers resist truth telling at the end of life: a qualitative secondary analysis

AIMS AND OBJECTIVESnTo draw out the similar complexities faced by staff around truth-telling in a childrens and adult population and to interrogate the dilemmas faced by staff when informal carers act to block truth-telling.nnnBACKGROUNDnPolicy encourages normalisation of death, but carers may act to protect or prevent the patient from being told the truth. Little is known about the impact on staff.nnnDESIGNnSecondary analysis of data using a supra-analysis design to identify commonality of experiences.nnnMETHODSnSecondary supra-analysis was used to transcend the focus of two primary studies in the UK, which examined staff perspectives in a palliative childrens and a palliative adult setting, respectively. The analysis examined new theoretical questions relating to the commonality of issues independently derived in each primary study. Both primary studies used focus groups. Existing empirical data were analysed thematically and compared across the studies.nnnRESULTSnStaff reported a hiding of the truth by carers and sustained use of activities aimed at prolonging life. Carers frequently ignored the advance of end of life, and divergence between staff and carer approaches to truth-telling challenged professionals. Not being truthful with patients had a deleterious effect on staff, causing anger and feelings of incompetence.nnnCONCLUSIONSnBoth childrens and adult specialist palliative care staff found themselves caught in a dilemma, subject to policies that promoted openness in planning for death and informal carers who often prevented them from being truthful with patients about terminal prognosis. This dilemma had adverse psychological effects upon many staff.nnnRELEVANCE TO CLINICAL PRACTICEnThere remains a powerful death-denying culture in many societies, and carers of dying patients may prevent staff from being truthful with their patients. The current situation is not ideal, and open discussion of this problem is the essential first step in finding a solution.

The experiences of providing children’s palliative care education in undergraduate nursing programmes – A discussion of some practical issues

Despite recent proliferation of palliative care services for children, and the fact that the needs of these children and their families are enshrined in current policy directives, the challenges of providing education for nurses within this area of practice is largely underexplored. This paper examines some of the key issues facing nurse educators who are involved in the delivery of palliative care content in undergraduate childrens nursing programmes. Drawing on the extensive experiences of two nurse educators in childrens palliative care education, research and practice, key issues which should be considered by those involved in curriculum development and delivery will be outlined. Such issues include ambiguity in terminology and resultant lack of conceptual clarity, the limited evidence base to underpin practice and education, the complexities of teaching sensitive topics to large groups and limited teaching expertise to deliver the content. Suggestions for addressing such issues will be outlined.

Comparing the needs of families of children dying from malignant and non-malignant disease: an in-depth qualitative study

Objective To examine the experiences of bereaved parents concerning the care provided to children who died from cancer compared to those who died from a non-malignant condition. Design An in-depth qualitative study with bereaved parents of children who died as a result of a life-limiting diagnosis, recruited through two regional centres. Results Although parents accounts displayed commonalities, key differences were discernible. Typically, parents of children with cancer considered care at the end of life as well resourced and responsive to their and their childs needs. In contrast, parents of children with non-malignant conditions reported under-resourced and inadequately responsive services. Although both groups of parents called extensively on military metaphors such as ‘battle’, ‘fight’ and ‘struggle’, the focus of their respective energies was different. In the one case the adversary was disease and illness; in the other it was service providers and service provision. Conclusions Community-based services for children and young people with cancer at the end of life were perceived by parents as responsive to parent and child needs. Conversely, community services for children and young people with non-malignant conditions were experienced as ad hoc and under-resourced. Community services for children with non-malignant conditions may require further development if they are to meet the levels of support offered to parents of children with cancer. If improvement is to be achieved, the need to raise awareness regarding hospice services, hospice referral and eligibility criteria across the entire gamut of service providers is essential.

A parent in the classroom – a valuable way of fostering deep learning for the children’s nursing student

Changes and developments in child health have led to children who would not normally have lived, surviving with very complex needs. The psychosocial impact on the family unit is immense, which in turn has had an effect on childrens nursing and nurse education. Psychological and sociological needs of the child and family are therefore, pivotal in any childrens nursing curriculum. As a clinician I have a wealth of experience caring for families whose child has cancer and therefore, have an in depth knowledge of the pressures they face throughout their childs illness trajectory. Fortunately I have not personally lived the experience, therefore, it would seem that a parent would have much to contribute to the learning of student nurses regarding the psychosocial impact of diagnosis of a life-threatening illness on the child and family. This action research study examines and demonstrates the value of a parent in fostering deep learning in childrens nursing students.

Living Through the Life-Altering Loss of a Child: A Narrative Review

The death of a child is a life-altering event for parents, leading to grief that is individual, intense, and long lasting. The grief experienced by parents following the death of their child can affect their relationships and as they sometimes see it, their role within society. Parents can find grief isolating, due to society’s lack of understanding of their grief experience. Gendered differences in grief reactions have also been noted. Theoretical understandings of bereavement, now acknowledge parental need “not to let go” but rather to reconstruct relationships with their deceased child in terms of a continuing bond. This narrative literature review draws together theory and research on the topic, highlighting current knowledge and suggesting ways in which children’s nurses can support parents as they live through the loss of their child.

Disorder and disconnection: parent experiences of liminality when caring for their dying child

Parents caring for a child with a life threatening or life limiting illness experience a protracted and largely unknown journey, as they and their child oscillate somewhere between life and death. Using an interpretive qualitative approach, interviews were conducted with parents (n = 25) of children who had died. Findings reveal parents experiences to be characterised by personal disorder and transformation as well as social marginalisation and disconnection. As such they confirm the validity of understanding these experiences as, fundamentally, one of liminality, in terms of both individual and collective response. In dissecting two inter-related dimensions of liminality, an underlying tension between how transition is subjectively experienced and how it is socially regulated is exposed. In particular, a structural failure to recognise the chronic nature of felt liminality can impede parents effective transition.

Seeing is believing – Reducing misconceptions about children's hospice care through effective teaching with undergraduate nursing students

Childrens palliative care has evolved in recent years and is now recognised as a distinct area of health and social care practice. Whilst childrens hospices are viewed as central to quality care for these children and families, lack of knowledge regarding the exact nature of care they provide exists. Education can go part way to changing attitudes and knowledge about the key contribution of hospices, thus improving future care. Alternative and innovative strategies to stimulate meaningful learning are pivotal to childrens nurse education and this paper examines one such innovation adopted with 2nd year childrens nursing students. Aiming to help students explore the ethos of childrens hospice an educational visit was arranged, followed by an on line discussion. Although some practical challenges were encountered, the visit heightened student awareness moving them from the readily held perception that childrens hospices were exclusively for dying children and was viewed by students as more effective than a traditional classroom session.

Transition from children’s to adult services for young adults with life-limiting conditions: A realist review of the literature

BACKGROUNDnImprovements in care and treatment have led to more young adults with life-limiting conditions living beyond childhood, which means they must make the transition from childrens to adult services. This has proved a challenging process for both young adults and service providers, with complex transition interventions interacting in unpredictable ways with local contexts.nnnOBJECTIVESnTo explain how intervention processes interact with contextual factors to help transition from childrens to adult services for young adults with life-limiting conditions.nnnDESIGNnSystematic realist review of the literature.nnnDATA SOURCESnLiterature was sourced from four electronic databases: Embase, MEDLINE, Science Direct and Cochrane Library from January 1995 to April 2016. This was supplemented with a search in Google Scholar and articles sourced from reference lists of included papers.nnnREVIEW METHODSnData were extracted using an adapted standardised data extraction tool which included identifying information related to interventions, mechanisms, contextual influences and outcomes. Two reviewers assessed the relevance of papers based on the inclusion criteria. Methodological rigor was assessed using the relevant Critical Appraisal Skills Programme tools.nnnRESULTSn78 articles were included in the review. Six interventions were identified related to an effective transition to adult services. Contextual factors include the need for childrens service providers to collaborate with adult service providers to prepare an environment with knowledgeable staff and adequate resources. Mechanisms triggered by the interventions include a sense of empowerment and agency amongst all stakeholders.nnnCONCLUSIONSnEarly planning, collaboration between childrens and adult service providers, and a focus on increasing the young adults confidence in decision-making and engaging with adult services, are vital to a successful transition. Interventions should be tailored to their context and focused not only on organisational procedures but on equipping young adults, parents/carers and staff to engage with each other effectively.