An exploration of parents' and young people's perspectives of hospice support

Kirk, Susan; Pritchard, Erica

doi:10.1111/j.1365-2214.2011.01232.x

Cited by 40 publications

(93 citation statements)

References 13 publications

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“…This is consistent with previous qualitative and survey research detailing the benefits of respite care for these families. 3,4,10,12,13 The current research findings are contrary to longitudinal studies that showed no significant benefit of respite on the mental health of caregivers of children with life-threatening conditions. 14,15 Discrepant findings may be due to the different time points in which data were collected.…”

Section: Discussioncontrasting

confidence: 99%

A pre-test and post-test study of the physical and psychological effects of out-of-home respite care on caregivers of children with life-threatening conditions

et al. 2015

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Section: Discussioncontrasting

confidence: 99%

A pre-test and post-test study of the physical and psychological effects of out-of-home respite care on caregivers of children with life-threatening conditions

et al. 2015

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“…Unfortunately, referral to hospice services for this group was often delayed. Although this delay may in part be explained by parental reluctance to avail of hospice care as they associate this with the immediate end of life,27 28 our evidence also suggests a failure to inform parents of their entitlement to hospice care and that such services existed. Late referral created significant problems, in that a therapeutic relationship was formed over a shorter period of time, when the child was close to the end of life and with their family in a period of acute crisis.…”

Section: Discussionmentioning

confidence: 80%

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

Price

Jordan

Prior

et al. 2012

BMJ Support Palliat Care

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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 nonmalignant 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 child's 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.

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“…This should not be mistaken for lack of understanding of their illness. A parent interviewed in an examination of how families are supported in hospice was surprised to find that ‘children were there to live, to have the best time possible’ [31]. The same study found that young people with terminal illness want to go out and meet other children who are not ill.…”

Section: Desire To Continue Livingmentioning

confidence: 99%

Understanding death with limited experience in life

Bates

Kearney

2015

Current Opinion in Supportive &Amp; Palliative Care

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Purpose of review An up-to-date summary of the literature on children’s and adolescents’ understanding of their own terminal illness and death. Recent findings Clinicians still find it difficult to speak with pediatric patients about death even though guidelines for facilitating communication on the topic exist. As a result, pediatric patients are less likely to develop a clear understanding of their illness and there is a disconnect between clinicians and parents about prognosis, even when clinicians have concluded there is no longer possibility for cure. Insufficient communication and poor understanding may increase the risk of patients feeling isolated, mistrustful and anxious, and deprive them of a role model who can communicate about painful issues or share difficult feelings. Despite these complexities, young people often show remarkable resiliency in the face of death and want to get the most out of the remaining time they have. Summary In addition to these most recent findings, this review examines the challenges in researching this topic, obstacles to patients receiving information about prognosis, and how physical symptoms affect patients’ ability to develop an understanding. It also reviews sources of insight into pediatric patients’ understanding including the development of concepts of death, fears about their own death, legal interpretations of what patients understand, and how terminally ill young people continue to treasure life. It concludes by addressing ways clinicians can use the knowledge we have to communicate well with dying children and adolescents and their families.

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An exploration of parents' and young people's perspectives of hospice support

Abstract: Parents value a model of care that provides holistic, family-focused support that is responsive to individual needs and which promotes control and active involvement in decision making. The key challenge now is to respond to increasing need and a changing population of users.

Cited by 40 publications

References 13 publications

A pre-test and post-test study of the physical and psychological effects of out-of-home respite care on caregivers of children with life-threatening conditions

A pre-test and post-test study of the physical and psychological effects of out-of-home respite care on caregivers of children with life-threatening conditions

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

Understanding death with limited experience in life

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