Development of a self-management support practice framework for addressing cancer-related fatigue: a modified Delphi study

To our knowledge, this study is the first to develop a framework of core practices required by health professionals to deliver effective self-management support to people affected by cancer (i.e. cancer patients and survivors) experiencing cancer-related fatigue. This framework had input from an international panel of cancer consumers, health professionals, and cancer researchers. The modified Delphi study that was used established resounding consensus on the best clinician practices for facilitating cancer-related fatigue self-management support at all phases of the cancer continuum.

For self-management to be effective, cancer patients and survivors must be supported in managing their symptoms and conditions. Health professional guidance for fatigue management often lacks detail about effective self-management support, contributing to the provision of inadequate and limited support [18, 19, 21, 29] (e.g. information provision alone, normalisation of fatigue symptoms, advising individuals to simply rest and relax).

The practice framework presented in this study considers the complex nature of cancer-related fatigue management, by conceptualising self-management as an active process that requires an essential set of collaborative-and partnership building behaviours, skills, knowledge, and attitudes. Further, it presents the ideal practices needed to effectively facilitate the adoption of fatigue self-management behaviours. These include action planning, motivational interviewing, and assessment of self-management capacity to facilitate self-management through enhanced self-efficacy. This framework could be used by clinicians as a tool to guide their provision of cancer-related fatigue self-management support. This framework may also allow clinicians to evaluate current practice, determine professional development needs, and support their understanding of the holistic nature of effective cancer-related fatigue self-management support.

Although primarily directed to health professionals, this practice framework may have functionality across several settings (see Box 1). Clinical leaders and educators could use the framework to build awareness and knowledge among their clinical teams. Researchers could use the framework to synthesise evidence on cancer-related fatigue self-management Consumers could refer to the framework to advocate for their care, and develop their own understanding on the various roles of self-management support for cancer-related fatigue.

Box 1 Use of the cancer-related fatigue self-management support practice framework.

The following recommendations are designed to help individuals and organisations make the best possible use of the Practice Framework

For the individual health professional

  • Use the Practice Framework as a tool:

    ○ to guide the provision of self-management support for cancer-related fatigue

    ○ for determining your professional development needs

    ○ for evaluating current practice when providing support to those managing cancer-related fatigue

  • Use the Practice Framework and associated learning resources to undertake self-directed learning

  • Refer colleagues new to working with people affected by cancer (i.e. cancer survivors, cancer patients) and/or cancer-related fatigue to the framework

  • Use the Practice Framework to develop an understanding about:

    ○ the extent of cancer-related fatigue impact on those affected by cancer and the importance of its management

    ○ the various roles of different health professionals in the delivery of self-management support for cancer-related fatigue

For the clinical leader/ educator

  • Use the Practice Framework as a tool to:

    ○ develop clinician awareness and knowledge of evidence-based cancer-related management and assessment strategies

    ○ provide training/in-service programmes to improve ability to undertake practices (how to use certain questionnaires, practice developing an action plan, etc.)

    ○ advocate for system-level changes to provide resources (time, space, and human) to deliver optimal support for cancer-related fatigue management

For the cancer-related fatigue self-management intervention/programme developer

  • Use the Practice Framework to aid development of a cancer-related fatigue self-management intervention/programme (determining the specific components that are needed)

For the researcher

  • Use the Practice Framework as a tool to:

    ○ describe self-management support interventions for cancer-related fatigue

    ○ synthesise evidence on cancer-related fatigue self-management

For the consumer experiencing cancer-related fatigue (and their family/carer’s)

  • Use the Practice Framework as a tool to:

    ○ develop understanding of the various roles of different health professionals in the delivery of self-management support for cancer-related fatigue

    ○ Advocate for improved delivery of cancer-related fatigue management support

    ○ advise your health care team(s) about the existence of the practice framework and teaching and learning resources in efforts to improve your care

Although panel participants acknowledged framework components as best practice, comments identified a need for further clarity around healthcare professional responsibility (i.e. who should do what). Cancer-related fatigue is multifactorial [1, 39], meaning that there are diverse factors that can contribute to, or cause it (e.g. cancer type, treatment type, anaemia, nutrition factors, psychological factors, etc.). It is therefore expected that the provision of cancer-related fatigue self-management support will require a multidisciplinary approach. If a multidisciplinary approach is adopted, it will not be necessary for all healthcare professionals to be proficient and have the commitment to deliver all practice components, especially when these fall outside of a professional’s expertise or scope of practice. However, this practice framework does allow for healthcare professionals to identify areas of care provision that may be achievable within their clinical care domain, and where additional training or collaboration may be encouraged or required.

The execution of the key practices and practice components specified in the framework may require health professionals to apply, adapt, and integrate new and existing evidence-based knowledge or seek professional development opportunities. This framework does not provide, present, or describe the capabilities or competencies required by health professionals, as these are already described in clinical practice guidelines [1, 2, 10, 24, 25]. Rather, the practice framework outlines the support tasks that health professionals and health care teams should undertake when supporting people affected by cancer to self-manage their fatigue.

The consumers involved in this study emphasised the importance of health professionals not merely providing information on self-managing fatigue, but delivering information in a way that promotes the understanding and knowledge of the consumer. Although not explicitly listed in each practice item, we stress that the execution of practices outlined in the framework should be underpinned by the presence of effective, person-centred, health professional communication which involves the ability to establish and develop mutual understanding, rapport, trust, respect, and cooperation with people affected by cancer using clear and plain language. This includes making appropriate adjustments (e.g. use of appropriate language and detail, use of appropriate verbal and non-verbal cues, confirming that the other person has understood) to meet the communication and information needs of patients and their support network (e.g. caregivers, family, friends) and providing opportunities for the patient and their support network to demonstrate their understanding.

Future work

This study has identified the requisite practices needed to effectively deliver fatigue self-management support. Although some feedback to enhance framework usability and implementation was received and incorporated, future work could involve further consultation with key stakeholders. This consultation could be used to enhance understanding of stakeholders’ perspectives about the acceptability and relevance of the framework to specific clinical, educational, and cultural contexts, and among underserved or high-risk groups. Future work could also identify different stakeholders’ needs in supporting the implementation of the framework in their local setting. This includes fine-tuning the language and presentation of the framework for different contexts (e.g. ‘cheat sheets’, communication tools, role play scenarios for training, flow diagrams, etc.) and determining educational and training requirements. Stakeholder consultation could also be used to further define the roles of different professional disciplines in providing self-management support for cancer-related fatigue. Such developments would fine-tune the framework to provide clinical and implementation guidance that encourages clear professional judgement and explicit decision-making.

Strengths and limitations

Strengths of this study include its online anonymous nature, which allowed for unrestricted expression of panel opinions. This helped reduce the influence of dominant personalities and the effect of panellists’ status on results [37]. However, the online forum limited the opportunity for robust discussion. Another strength of our work is that the modified Delphi study comprised representation from a diverse international panel of consumers, health professionals, and cancer researchers from varying continents, professional fields, and clinical settings. Although the resulting practice framework incorporated diverse international perspectives, the panel was not representative of participants from every country/region, culture, setting, or scope of practice. Cultural influences on health, fatigue, compliance, and attitudes towards care will need to be considered when adapting the framework to different contexts [40]. Limiting panel eligibility criteria to individuals proficient in English could have resulted in potential candidates and viewpoints being missed.

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