An exploration of the experiences of paid social care staff who have supported and/or currently support people with learning disabilities living with cancer in residential services across Wales.
Tina Crimes BSc (Econ) PGCR PhD
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.
Whilst this study did not focus specifically on older people with cancer, evidence suggests the incidence of cancer is age related and will continue to increase within this population. With people with learning disabilities expected to access mainstream health services, previous studies have highlighted the difficulties people with learning disabilities have accessing such services due to issues such as poor communication and stereotyping.
These factors give rise to inequalities in health. The UK healthcare system relies on individuals recognising they have a health problem, seeking assistance and reporting symptoms so that a diagnosis can be made.
As people with learning disabilities may experience difficulties articulating their health problems and navigating this system, they may become reliant uponcarers, including paid social care staff, to access healthcare services on their behalf. Little is known about how paid social care staff, who may have little or no healthcare training, experience the development and ongoing challenges of supporting tenants with cancer, despite their pivotal role as the interface between the tenants and the UK healthcare system.
The aim of this study was to address this gap in knowledge and develop a theory grounded in practice. It also provides:-
Fourteen semi-structured interviews were carried out across Wales. Participants were employed by private residential learning disability service organisations and were chosen to reflect those experiencing a specific
phenomena, (supporting a tenant with cancer), within a specific environment, (private residential learning disability settings across Wales).
The theoretical model below highlights the main themes that emerged from the data and helps to demonstrate how participants built resilience whilst supporting their tenants with cancer. Resilience is concerned with an individual’s ability to adapt to stressful situations. Conceptually, resilience refers to the resistance of risk, adversity and/or stress. Resilience results from basic human adaptation systems.
Resilient individuals can remain deeply moved by events, but are not overwhelmed by them, offsetting negative experiences with positive ones.
In this study participants were propelled into a cycle of building resilience when the tenants became ill with cancer. Currently the social care worker role identity is challenged when a tenant becomes ill. Social care staff are not required to have any prior healthcare experience and/or healthcare training. Yet findings from this study indicate providing elements of healthcare support to the tenants with cancer is becoming a new and essential dimension of their role. This dimension appears to be neither acknowledged nor supported by service organisations, with social care workers’ job descriptions making no reference to or outlining any requirement to undertake any healthcare related task. As a result participants’ role identities were challenged when a tenant became ill and participants were expected to meet the tenants’ changing needs by carrying out new and unfamiliar healthcare tasks, which they felt under-equipped to provide.
This created confusion and a lack of clarity surrounding the expectations of the social care worker role for not only the social care worker, but also for others working/involved with the social care worker such as health
professionals and relatives. The social care worker was not sure whether these duties were part of their role and generally did not feel adequately equipped or supported to provide them. As a result participants experienced
role ambiguity. This role ambiguity resulted in participants experiencing a series of emotions.
Role emotions represented the emotional responses of participants to the role ambiguity they experienced. For example, when participants encountered unsupportive GPs, which they felt under-equipped to challenge, they were left with negative feelings of anger, frustration and stress. The role emotions participants experienced were predominantly negative and left them vulnerable to burnout. Whilst none of the participants seemed to have experienced burnout they were exposed to a number of risk factors and others may experience stress and burnout in a similar situation.
Participants attempted to resolve these negative emotions by converting them into positive emotions, offsetting negative feelings with positives ones. They did this by gaining support and reassurance from their teams, exercising coping strategies, accessing training (where available) and remembering the special relationships and moments they had shared with their tenants. All of the participants in this study appeared to have achieved role resolution.
When the tenant recovers or dies, the social care worker is left with a higher level of resilience. This in turn informs their role identity and places them in a more resilient position should they encounter a similar situation in the future.
However, the cycle would be broken if social care workers were unable to offset their negative feelings with positive ones. In this event they might experience burnout and stress rather than role resolution. Whilst participants achieved role resolution, this was largely by accident.
However, by gaining an understanding of the situation offered by the theoretical model presented in this study, there are areas where agencies could intervene and reduce the risk of stress and burnout. By providing
adequate training and support before supporting a tenant with cancer, social care workers would have the opportunity to build prior sufficient resilience to the challenges supporting a tenant with cancer brings.
A gap was identified in the current knowledge surrounding the support of people with learning disabilities and cancer. This study was developed to address this gap by providing valuable insight into the experiences of paid
social care workers supporting people with learning disabilities. Currently paid social care workers supporting tenants with cancer are being expected to undertake healthcare tasks for which they are not receiving training and which are not outlined in their job descriptions. This issue has not been highlighted in previous research. From this, a theory has been proposed suggesting staff build resilience through a cyclical process. The significance of this theory is that it can be used to build resilience in a proactive way.
1. Service organisations should revisit the job descriptions of their social care staff in view of the health needs of their tenants and ensure these job descriptions accurately reflect the mix of skills and duties required
by social care staff.
2. Service organisations should provide staff with healthcare training appropriate to the needs of their tenants. Where additional needs arise (such as cancer), extra focused training should be provided. Healthcare training should incorporate health advocacy, health promotion and surveillance, meeting the health information needs of tenants and mandatory training surrounding awareness and understanding of the Mental Capacity Act (2005) (to be regularly updated).
3. Greater effort should be made across all service providers within all sectors to raise awareness concerning the vital role social care workers play in meeting the healthcare support needs of people with learning
4. When a tenant is diagnosed with cancer, service organisations should ensure that a cancer specialist from a cancer organisation such as Macmillan or Tenovus is invited to speak with support staff and answer
any questions they may have concerning cancer.
5. Service organisations should ensure there are adequate staffing levels from the outset of a tenant’s illness, with levels being reviewed and maintained at all times.
6. Service organisations should make available a combination of clinical supervision, support and counselling for social care workers supporting tenants with cancer.
7. Staff teams supporting tenants with cancer should have the opportunity to debrief both individually and collectively after providing this intense period of support to tenants.
8. Service organisations should support social care workers who organise their tenants’ funerals and facilitate the opportunity for tenants to become more involved in planning their own funerals.
9. After a tenant has died and the funeral has taken place, decisions surrounding when the next tenant should move in, should be addressed by service organisations on an individual housing project basis and discussed with the staff team and other tenants.
10. Further research should be considered surrounding the current gaps in empirical evidence outlined throughout this study. These include the need for further research exploring the incidence and prevalence of
cancer within the learning disability population, the bereavement needs of both people with learning disabilities and social care workers and the education and training needs of social care workers supporting a
terminally ill tenant. Additionally, the gendered dimensions of care, healthcare staff perceptions of the social care worker role and their understanding of the relationship social care workers share with their
tenants should also be explored. So too should the cancer information needs of social care workers, the relationship between relatives and social care staff who are jointly involved in supporting a tenant with
cancer, and service organisations’ attitudes towards the emotional dimension of the social care worker/tenant relationship.