Hospice nurses and genetics: implications for end‐of‐life care

Metcalfe, Alison; Pumphrey, Rachel; Clifford, Collette

doi:10.1111/j.1365-2702.2009.02935.x

Cited by 21 publications

(41 citation statements)

References 22 publications

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“…In the survey of hospice nurses, seniority was a predictor of confidence in the ability to assess genetic risk and refer to genetic service [30]. Although nurses with previous education in genetics were more confident than those without, the majority in both groups still had poor self-efficacy scores overall [30].…”

Section: Low Confidencementioning

confidence: 99%

“…Lack of knowledge amongst health care providers was cited in five studies as a barrier to discussing genetics with palliative care patients or their family members [19,25,26,30,37]. In a survey of palliative physicians, only 10% were aware of the availability of DNA storage for patients with a possible underlying genetic predisposition [37].…”

Section: Lack Of Knowledgementioning

confidence: 99%

“…Of palliative care physicians, nearly 40% (19/49) felt Bnot qualified at all^to recommend DNA storage [37]. In a mixed-methods study of hospice nurses, 75% (248/328) reported feeling Bnot at all confident^about integrating genetics into everyday clinical practice [30], with 54% (177/328) lacking the confidence to refer and 74% (241/328) being unaware of how to refer patients to genetic services [30]. Low confidence was also reflected in a qualitative study, with one hospice nurse suggesting development of guidelines for referral and ways to broach the subject [19].…”

Section: Low Confidencementioning

confidence: 99%

“…Although nurses with previous education in genetics were more confident than those without, the majority in both groups still had poor self-efficacy scores overall [30]. In a qualitative study of palliative nurses, four participants cited poor confidence as a result of lack of knowledge [19].…”

Section: Low Confidencementioning

confidence: 99%

“…In a survey of 328 hospice nurses, a fifth of the sample had assumed that genetic issues would already have been addressed prior to commencing palliative treatment [30]. This assumption was also reflected in one of the qualitative studies [19], where one participant stated:…”

Section: Provider Assumptionsmentioning

confidence: 99%

See 4 more Smart Citations

Genetics in palliative oncology: a missing agenda? A review of the literature and future directions

Morrow

Jacobs

Best

et al. 2017

Support Care Cancer

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Purpose In the palliative oncology setting, genetic assessment may not impact on the patient's management but can be of vital importance to their surviving relatives. Despite care of the family being central to the ethos of palliative care, little is known about how hereditary aspects of cancer are addressed in this setting. This review aims to examine current practices, identify practice barriers and determine the genetic information and support needs of patients, family members and health providers. Methods Key databases were systematically searched to identify both quantitative and qualitative studies that addressed these aims. Data was extracted and coded using thematic analysis. Results Eight studies were included for review. Suboptimal genetic practices were identified, with lack of knowledge and poor confidence amongst providers reported as barriers in both qualitative and quantitative studies. Providers expressed concern about the emotional impact of initiating these discussions late in the disease trajectory; however, qualitative interviews amongst palliative patients suggested there may be emotional benefits. Conclusions All lines of evidence suggest that genetics is currently missing from the palliative agenda, signifying lost opportunities for mutation detection, genetic counselling and appropriate risk management for surviving relatives. There is an urgent need for interventions to improve provider knowledge and awareness of genetic referral pathways and for research into the genetic information and support needs of palliative care patients.

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Section: Low Confidencementioning

confidence: 99%

Section: Lack Of Knowledgementioning

confidence: 99%

Section: Low Confidencementioning

confidence: 99%

Section: Low Confidencementioning

confidence: 99%

Section: Provider Assumptionsmentioning

confidence: 99%

See 3 more Smart Citations

Genetics in palliative oncology: a missing agenda? A review of the literature and future directions

Morrow

Jacobs

Best

et al. 2017

Support Care Cancer

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Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: Consensus across health professionals and service users

et al. 2017

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Genetic Testing for Rare Cancer: The Wider Issues

Jacobs

Pichert

2016

Recent Results in Cancer Research

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Identification of a potential genetic susceptibility to cancer and confirmation of a pathogenic gene mutation raises a number of challenging issues for the patient with cancer, their relatives and the health professionals caring for them. The specific risks and management issues associated with rare cancer types have been addressed in the earlier chapters. This chapter considers the wider issues involved in genetic counselling and genetic testing for a genetic susceptibility to cancer for patients, families and health professionals. The first part of the chapter will present the issues raised by the current practice in genetic counselling and genetic testing for cancer susceptibility. The second part of the chapter will address some of the issues raised by the advances in genetic testing technology and the future opportunities provided by personalised medicine and targeted cancer therapy. Facilitating these developments requires closer integration of genomics into mainstream cancer care, challenging the existing paradigm of genetic medicine, adding additional layers of complexity to the risk assessment and management of cancer and presenting wider issues for patients, families, health professionals and clinical services.

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Hospice nurses and genetics: implications for end‐of‐life care

Abstract: This study highlights the genetics education needs of hospice nurses in providing end-of life care for patients and their families affected by inherited genetic conditions.

Cited by 21 publications

References 22 publications

Genetics in palliative oncology: a missing agenda? A review of the literature and future directions

Genetics in palliative oncology: a missing agenda? A review of the literature and future directions

Key messages for communicating information about BRCA1 and BRCA2 to women with breast or ovarian cancer: Consensus across health professionals and service users

Genetic Testing for Rare Cancer: The Wider Issues

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