Elsevier

European Journal of Cancer

Volume 44, Issue 12, August 2008, Pages 1625-1631
European Journal of Cancer

Review
Enhancing the supportive care of parents with advanced cancer: Development of a self-directed educational manual

https://doi.org/10.1016/j.ejca.2008.02.045Get rights and content

Abstract

Diagnosing and treating young patients with cancer can be stressful for health professionals; however, when the prognosis is poor and the patient has dependent children, even experienced clinicians can feel distressed and helpless. Parents with advanced cancer commonly express anxiety about the impact of the disease on their children, yet health professionals often feel unable to respond constructively because of lack of training, or concern that discussion about such difficult issues will compound parental distress. In response to this problem, an educational manual has been devised to assist oncology staff to better understand the emotional impact of parental advanced cancer, encompassing information about specific reactions of children, including strategies to help children and families cope. This paper describes the development and content of the resource which provides clinically relevant information and evidence-based recommendations to guide supportive care. The manual differs from the more traditional didactic resources in that it examines the very personal impact for professionals working with parents with advanced disease, encouraging reflection and engages the reader in clinical exercises which encourage active learning and application of knowledge into authentic clinical contexts. Although the manual is designed primarily for nurses, it is clear that much of the information is relevant for all health professionals involved in the care of parents with advanced cancer.

Section snippets

Background

A diagnosis of advanced cancer affects the whole family,1 severe or overwhelming anxiety being documented in 32% of families newly referred to a palliative care service.2 Severe family anxiety is twice as common if the patient with cancer is aged younger than 45 years.3 Few parents receive information or support about ways of helping their children cope, and this compounds distress,4 leading to the avoidance of discussion about difficult issues.5 Children with a parent with cancer tend not to

Development of educational manual

The manual is designed to be self-directed, the style and content of the manual reflecting important educational principles: involving the learner actively; providing learning related to understanding and solving real clinical problems and opportunities to reflect on practice.11 Reflection on practice involves the analysis of nursing practice, fostering an understanding of the nurse’s work and the development of ‘critically thoughtful processes essential for providing nursing care in complex

Emotional dimensions of advanced cancer

It is essential to review concepts such as grief, loss and hope and appreciate that as disease progresses, existential issues assume increased importance,14 influencing treatment decisions and adjustment. However, often health professionals feel uncomfortable about raising these issues. Caring for a patient coping with advanced disease inevitably elicits personal responses in the carer, and a reflective exercise encourages consideration of the ways this could affect clinical care, see Table 1.

Needs of the children of parents with cancer

Up to 20% of children with a parent with early cancer have high self-reported anxiety.26 Children with a parent with terminal cancer have lower self-esteem and deficits in social competence,27 and have also been reported to have significantly more behaviour problems than other children.28 Stress levels of children with a parent with advanced cancer are even higher than levels following parental death.29

A major factor affecting the adjustment of children is their developmental stage,30 and an

Module 3

This Module provides prompts and suggestions which could be used in response to specific challenges, such as parents who express anger, guilt about their illness or even minimise its significance for the family. The emphasis in these examples is on being supportive and acknowledging parental distress, rather than the more instinctive reassurance commonly offered by health professionals (see Table 5).

Discussion

Even with practical suggestions and guidance, responding to young patients and those with young children is stressful for nurses.59 When placed in difficult situations, nurses give information which is not requested by patients in order to maintain control over the clinical encounter, and to prevent them having to engage in emotionally loaded discussions.60 Whilst protective for the nurse, this limits attention to the patient’s needs. This is of concern, given the evidence about the benefits of

Conflict of interest statement

None declared.

Acknowledgements

The authors wish to thank the expert reviewers for their generosity and expertise: Sanchia Aranda, Linda Barrett, Kate Cameron, Meg Lewis, Gabrielle Prest and Kate White.

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