An Exploration of the Experiences of Paid Social Care Staff who have Supported and/or Currently Support People with Learning Difficulties Living with Cancer in Residential Services across Wales: A Grounded Theory Study
Background: - People with learning disabilities are living longer. Increased longevity ensures the learning disability population is vulnerable to age related illnesses, such as cancer. Juxtaposed with the deinstitutionalisation movement of recent decades and the resulting growth and increasing demand for community based, supported living arrangements, many residential services are experiencing higher levels of ageing tenants who may be vulnerable to cancer. This is placing a responsibility on paid social care staff that may have little or no healthcare training, but are increasingly expected to support tenants who may have cancer. Little is known about how paid social care staff experience the development and ongoing challenges of their tenants’ health conditions. Aim: The aim of this research is to explore the experiences, challenges and support needs of paid social care staff supporting people with learning disabilities living with cancer in residential services across Wales. Method: This study has adopted a qualitative paradigm and a symbolic interactionist perspective to explore participants’ experiences. Data was collected from analysis of 14 semi-structured interviews. Theory was generated simultaneously using Charmaz’s (2010) version of constructivist grounded theory. Since existing evaluation criteria did not adequately address the study design the researcher has developed an original framework of evaluation criteria for this study. Findings: Findings indicate four theoretical categories emerging from the data. These are: - role identity (how staff see their role), role ambiguity (how supporting a tenant with cancer changes their role), role emotions (how staff feel about these changes) and role resolution (how staff try to cope, resolve and prepare for these changes). Supporting a tenant with an illness such as cancer requires significant adjustments to the social care role. These adjustments blur social care role boundaries. For example, social care staff are expected to undertake healthcare tasks, such as administering illness specific pain relief and/or providing post-operative care. These changes to the staff role identity produce role ambiguity. Role ambiguity creates a series of role emotions leading staff into a process of role resolution where they attempt to resolve role ambiguity and create positive role emotions. This cyclical process inadvertently helps staff to build resilience. Resilience results from basic human adaptation systems. Resilient individuals can adapt to adversity and offset negative experiences with positive ones. Conclusion: Social care roles increasingly require a significant component of healthcare (a fact that is not widely recognised) and there is a need to ensure staff have prior adequate resilience attained through appropriate training and support to equip them in the challenges they will be expected to meet ahead.
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