Specialist nurse key worker in children's cancer care: Professionals' perspectives on the core characteristics of the role

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Highlights

  • This is the first systematic approach to examine the key worker role in children’s cancer care.

  • Four models of care have been described along a continuum of in reach and outreach.

  • Clinical, emotional, educational, and practical support is provided through knowledge, relationships and care coordination.

Abstract

Purpose

To describe the development and implementation of the specialist nurse key worker role across 18 children's cancer centres in the United Kingdom, and draw out significant factors for success to inform future development of the role across a range of specialities.

Method

Data were obtained through 42 semi-structured interviews and a focus group with 12 key workers. Framework analysis revealed two main themes: models of care and key workers' perspectives of the role.

Results

Four models of care were identified and described, roles were organised along a continuum of in reach and outreach with either the presence or absence of home visits and direct delivery of clinical care. Key workers' perspectives of the advantages of the role included: coordination of care (being the main point of contact for families/professionals), experience and expertise (communication/information) and the relationship with families. The main challenges identified were: time, caseload size, geographical area covered, staffing numbers and resources available in the hospital and community.

Conclusion

The label ‘key worker’ was disliked by many participants, as the loss of ‘specialist nurse’ in the title failed to reflect professional group. Leaving aside terminology, key workers shared core role elements within a continuum of in reach and outreach work and their involvement in direct clinical care varied throughout the pathway. Irrespective of the model they worked in, the key worker provided clinical, emotional, educational, and practical support to families, through the coordination of care, experience and expertise and relationship with families and professionals.

Introduction

A cancer diagnosis has a noticeable impact on children, young people and their families. Besides the complexities of treatment, they have to deal with diverse health, social, emotional, psychological, educational and employment needs. As a result they require a range of specialist and general services to meet these needs over a long period of time. However, they might have difficulty finding their way through the system and obtaining the support they need (Cook et al., 2013). These experiences place children and young people and their families at risk for increased psychosocial morbidity and fragmented care (Bultz and Carlson, 2005). One solution is to maximise care coordination, to improve processes designed to streamline and navigate the health-care system (Young et al., 2011).

The National Institute for Health and Clinical Excellence's Improving Outcomes for Children and Young People with Cancer guidance (NICE, 2005) recommended that cancer services should have processes in place to ensure effective coordination between professionals involved in the care of children and young people. Care should be integrated and coordinated throughout the patient's cancer journey. The key worker has been identified to meet this need and was defined by NICE (2005) as, ‘A person who, with the patient's consent and agreement, takes a role in co-ordinating the patient's care and promoting continuity, ensuring the patient knows who to access for information and advice’ (p200). Although coordination of care and the key worker role have been recommended since 2005, there is limited research in children's cancer care that relates to implementation and evaluation.

Research from other specialties, and from other countries, can illustrate role development and its potential impact. For example, in adult palliative care the relevance of having a professional coordinating care has been highlighted, facilitating communication between the different professionals involved, someone taking responsibility and with knowledge and expertise to take the lead in supporting the medical and emotional needs of the patient and family (Dunne et al., 2005, Field, 1998, Field and McCaughey, 1998, Gysels et al., 2004, Ling et al., 2013, McIlfatrick and Curran, 2000). In adult cancer care the impact of coordination of care on both continuity and quality of care has also been demonstrated (Cancer Care Nova Scotia, 2004, Cook et al., 2013, Fillion et al., 2006, Freeman, 2006; Freijser et al., 2015, Ling et al., 2013). Cook et al. (2013) identified patient navigation as an important source of support for patients and families dealing with the challenges (emotional, informational, practical) associated with cancer. More specifically, research shows that patients are more likely to understand their treatment plan, access services they need, cope with their illness and are better prepared for consultations and treatments (Cancer Care Nova Scotia, 2004, Fillion et al., 2006, Fillion et al., 2009, Freeman, 2006). Continuity of care, the outcome of care coordination, is described as important for both patients and carers (Sharma et al., 2009). It has been associated with improved patient satisfaction, reduced emergency room visits and influenced good patient-doctor relationships (Burge et al., 2003, Smith et al., 1999).

Despite roles being operationalized using different titles, for example, key worker (United Kingdom {UK}, Ling et al., 2013), professional cancer navigator (Canada, United States {US}, Cancer Care Nova Scotia, 2004), and cancer care coordinators (Australia, Freijser et al., 2015), the roles share three core characteristics: provision of information; provision of emotional and supportive care and coordination of services. Evidence shows that patient outcomes are better when nurses lead care coordination (Forbes, 2014). Lack of clarity of the role has however been reported, particularly around terminology used (Prokop, 2016) – in services where there was confusion among key workers about the role, parents were equally confused (Greco et al., 2005); key workers saw no differences between the key worker role and their everyday work (Mukherjee et al., 1999); the title was just a renaming of their role and thus unnecessary (Ling et al., 2013). Despite the lack of agreement towards the title used and constraints to role development, staff views are consistent in the recognition that key working improved multi-agency working and the relationships with families and other professionals (Abbott et al., 2005, Cook et al., 2013, Dunne et al., 2005, Field, 1998, Field and McCaughey, 1998, Gysels et al., 2004, Greco et al., 2005, Ling et al., 2013, McIlfatrick and Curran, 2000, Mukherjee et al., 1999).

Section snippets

Purpose

Returning to children's cancer care in the UK, in response to the NICE guidance (NICE, 2005), the Department of Health and National Health Service established an implementation group. In 2007, this implementation group agreed with a suggestion from a UK children's charity CLIC Sargent (http://www.clicsargent.org.uk/content/about-us), to support the full implementation of the guidance a review into the community based care and support needed by children and young people with cancer and their

Design

Using a descriptive qualitative approach, this study focuses on describing the nurse specialist key worker role, defining the core characteristics and ways of working. This was part of a larger mixed-methods study to evaluate the role of the key worker from the perspective of multiple stakeholders to best illuminate the impact of the nurse specialist key worker role on families' experiences (Clic Sargent 2015, //www.clicsargent.org.uk/sites/files/clicsargent/CLIC%20Sargent%27s%20Key%20Worker%20report.pdf

Results

Data were obtained from 42 semi-structured interviews with specialist nurse key workers. The first interview was in 2013 (n = 23), the second interview in 2014 (n = 19), and a focus group (n = 12). Framework analysis revealed two main themes – model(s) of care and perceptions of the role. The first theme describes how in practice the role was developed including: what the role includes; work with families; work with stakeholders; cancer journey; where key workers were based; and how families

Discussion

The key worker role has been implemented in 18 Principal Treatment Centres across England, Wales and Scotland. There are core shared characteristics as well as variety in the development and implementation of the role to meet local need. Consistent with emerging literature and evidenced in this study, the key worker role centred around three core functions. It is through these core functions the study findings will be examined: coordination of care (being the main point of contact for families

Limitations

The study has limitations that should be considered when interpreting the results. The interviews represent a snapshot in time of post-holders' views of the key worker role and the role is continuing to develop and change. The opinions expressed by key workers about the degree to which the role had been embraced by stakeholders and family members did not include any input from stakeholders and families: their views were captured later as part of the larger study (//www.clicsargent.org.uk/sites/files/clicsargent/CLIC%20Sargent%27s%20Key%20Worker%20report.pdf

Concluding thoughts

The key worker role is instrumental in enabling families and patients to access and navigate services. The complexity of families' needs is reflected in the complexity of the role. Key workers developed their role within a continuum of in reach and outreach work and their involvement in direct clinical care varied throughout the pathway. Irrespective of the model they worked within, the key worker provided clinical, emotional, educational, and practical support to children, young people and

Conflict of interests

We have no conflict of interests.

Acknowledgements

The authors would first like to thank the key workers who took part in this evaluation project.

Thanks to the CLIC Sargent and Tesco's Charity of the Year partnership in 2010/11 that made this project possible. Thank you also to the National Cancer Action Team for their support to initiate this project and fund the evaluation for the NHS England posts, supplemented by CLIC Sargent for Scotland and Wales.

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