‘Shadowing’ as a management strategy for chemotherapy outpatient primary support persons
A recent Australian study of unplanned hospital presentations made by chemotherapy outpatients showed that post‐treatment this group had higher rates of unplanned presentations and admissions for chemotherapy‐related symptoms than previously estimated 2. Findings indicate that this group has significant unmet health needs, and this and other research indicate that they rely heavily for active physical and emotional support on informal carers 3.
Despite overt reliance on informal/family care provision, little is understood of (i) the impact of this care provision on patient outcomes 6, (ii) the extent to which primary support persons feel the care they provide is well integrated into the overall pattern of service delivery and (iii) the social, emotional, economic and physical effects for people providing this care 7.
Research on family and informal care extends across a range of cancer contexts. Thomas and Morris 6 argue that this research can be divided into two camps: (i) research examining the activities of carers and the informal caring role and (ii) research examining the impact on carers of actively supporting someone with cancer. The authors maintain that the latter approach positions carers as likely ‘co‐users’ of health services – thus potentially ‘pathologising’ informal carers – rather than focusing on the caring role itself.
Alternative conceptualisations of carers have followed, including the view of carers as resources, as co‐workers 12 and as ‘experts’ in the provision of care for persons with significant care needs 15. Eagar et al. 8 have proposed that empirical research should focus on particular carer subgroups, to develop targeted strategies for improving patient and carer well‐being. Viewing informal carers as a homogenous group overlooks the fact that they have different experiences, needs and capabilities 16. The term ‘carer’ is itself a contested term. We use the term ‘primary support person’, rather than ‘carer’, to denote a family member or close friend nominated as their primary supporter by the person receiving chemotherapy.
To date, few qualitative studies have explored the experiences of informal carers in chemotherapy settings. These studies typically focus on a specific time frame (such as directly following diagnosis), setting or cancer type experience. The main findings can be summarised thus: first, they show that carers experience competing and fluctuating demands related to the cancer illness, treatment side effects and existing family and work commitments 3; second, they report on the various role changes involved as informal carers navigate their place within the healthcare setting and adapt to new patterns of personal, occupational and family life 3; and finally, they highlight the resourcefulness and resilience of informal carers seeking to meet these demands and to look after themselves and their families, despite often feeling inadequately supported or acknowledged by health providers 3.
In this article, we report on the first Australian study to explore the experiences of primary support persons of people receiving chemotherapy as outpatients. The aim was to identify key issues arising for people fulfilling this important role and the extent to which they feel supported to do this.