Background: Delivery of chemotherapy treatment in the last twenty years has shifted from inpatient to outpatient settings. Helping patients to manage adverse treatment effects has become the domain of family and friends (carers). A healthcare service and policy imperative was the need to provide carers with more support. Yet, service providers were unclear on how best to do this.
Overall Aim: To identify and develop interventions to enable healthcare professionals to prepare and support family and friends (carers) in the chemotherapy setting.
Methodology: An engaged scholarship and participatory approach underpinned by the initial iterative phases of the UK MRC (2000; 2008) Framework for Development and Evaluation of Complex Interventions. In the pre-clinical phase qualitative methods were used, including: participatory observation (>250 hours), in-depth interviews with healthcare professionals (n=22), carers (n=13) and patients (n=3) and two workshops. Action research underpinned the modelling phase.
Findings: Initial findings revealed that carers were not proactively prepared for the important roles they held; as a result they felt extremely uncertain and unsupported. Conversely, some carers’ reported that what eventually helped them were individual skilled nurses who were mindful of their roles and needs, had the ability to acknowledge and manage difficulties, and sign-post people when necessary to other sources of support. However, most healthcare professionals did not address carers’ needs in practice. Healthcare professionals were found to endure unrelenting workloads and worked within complex and constantly evolving clinical settings. Practitioners acknowledged that genuinely involving carers in these environments was difficult. Healthcare professionals described a reticence to engage with carers as ‘avoiding opening the cans of worms’. Explanations included: insufficient skills and confidence, particularly for managing difficult emotions and family dynamics, a lack of professional guidelines, organisation and team support, time and supportive care resources. Until now healthcare professionals’ needs and numerous challenges to effectively support carers had been a neglected area in practice and research.
In the modelling phase nurses were encouraged to get off the ‘hamster wheel of busyness’. In doing so they identified and initiated numerous person-centred actions, for example, nurses, supported by a carer advisory group, developed tools for carers and changes were made to the environment and pre-chemotherapy consultations.
Conclusions: Through creating safe spaces and critical facilitation, nurses were enabled and found solutions to overcome some of the challenges they experienced when engaging with carers, by learning from role models and supporting each other. However, this research has demonstrated that if healthcare professionals are to fulfil the current political and NHS aspirations of person-centred care, which incorporates carers’ needs, then they must have the practical guidance, support and resources to do so. An integrated approach, unifying policy, education, the organisation and multi-disciplinary team needs to be established.
Developing Interventions to Enable Healthcare Professionals to Meet the Needs of ‘Carers’ in the Chemotherapy Treatment Setting: A Participatory Research Study
Verity, R. (Author). 2015
Student thesis: Doctoral Thesis › Doctor of Philosophy