Participants in this study expressed a need for guidance and information about the potential life changes and impact on their wellbeing their role may have. NICE (2017) and Aberdeen City Health and Social Care Partnership (2018) guidelines suggest that all support persons should have access to a need’s assessment. At no stage did any support person receive any form of assessment by any healthcare or social care professional, nor was this offered. Considering the consequences and implications of supporting and individual with substance misuse issues, the support persons face a plethora of psychosocial strains which should be identified and responded to effectively (Steele, Maruyama and Glaynker 2010).
Whilst the Aberdeen City Health and Social Care Partnership (2018) make way in identifying that support persons should have a needs assessment, it is not currently something that is
79
routinely being implemented within Aberdeenshire. Furthermore, nor does this guidance suggest who or what organisation should be conducting the carers needs assessments. An assessment tool used within some Drug and Alcohol Services, General Practitioners surgeries, Social Work and Mental Health services in England are the Carer Support Needs Assessment Tool (CSNAT) (2016) highlighted in appendix sixteen. The Carer Support Needs Assessment Tool (CSNAT) facilitates support for family members and friends (carers) of adults with long term conditions. The CSNAT Approach has five key stages: Introduction of the CSNAT assessment, identifying the carers needs, an assessment conversation, shared action plan and a shared review. The CSNAT allows for support persons to identify how much support they require, which can be as little as someone who provides active listening skills and providing information, to signposting and referring to other agencies for further support. While carer assessments specifically for those caring for individuals with substance use issues do exist, there is no standardised carer assessment identified to use nationally (ADFAM 2018). In light of the literature and the findings within this study, it would be beneficial to develop a carers assessment to be conducted by frontline staff members who may have contact with support persons, including mental health professionals, general practitioners and social work. From the literature search and findings from this study and existing legislation including NICE (2017), it would be beneficial to carry out assessments to gain insight into the individual’s knowledge and understanding of substance misuse, determine if there is any impact on the relationship between support person and care receiver, any concerns regarding physical and psychological wellbeing and effects on daily life. This assessment tool would be able to provide support persons with an overview of their needs and allow staff to signpost and/or refer to relevant services to help the support person manage both their role, and their wellbeing. Regarding collaboration with healthcare professionals, the participants acknowledged their own experience and expertise in the care and support of their relative and felt underutilised when care and treatment was being planned. The variance in care provision without the support person understanding why, can increase strain further and reduce locus of control (Quinlan, Deane & Crowe 2018). Such adverse effects can be avoided with an explanation of the mode of treatment to support persons so that the support they provide for their relative can be congruent and informed (Sadler & McKevitt 2013).These effects should be considered regarding the inclusion of support persons in the care and decision making for their relatives despite the challenges of confidentiality, as feeling excluded or ignored by healthcare workers can lead support persons to feel isolated, powerless and frustrated (Wilkinson and McAndrew 2008). The insights that support persons have, not just in regard to their own experiences, but to the care and wellbeing of the individual who they support should be considered with higher regard by healthcare professionals. However, all participants in this study stated that this was
80
not the case. Most participants described their dealings with healthcare professionals as being negative, often feeling disregarded and excluded from not only the individual they supported, but their own wellbeing not being taken into consideration.
Support person concerns tended to concentrate on apprehensions of what their care recipient was doing if they were not with them such as engaging in risk-taking behaviours. They also expressed worries about what they would do if they were no longer able to provide care for them. Participants interviewed in this study who reported the fear of what would happen to their relative in their absence were parent caregivers and the eldest of the spousal caregivers. This could suggest that such worries increase with age given increased awareness of one’s finitude and mortality are associated with age (Van Boekel 2013). De Coster (2017) also found that caregivers worried most about who would look after their relative if they were no longer able. This would indicate that support persons who are older or more mindful of their finitude may be more inclined to worry and would require greater assistance regarding this. Thus, putting contingency and anticipatory care plans in place with support persons could help ease this concern.
A significant concern that predominated the support person interviews was the unpredictability of the substance use. Concern arose around care receiver behaviours that could be self- harming or destructive. This was challenging for the support person who felt unable to determine when these behaviours would arise so they worried about when and if they would use substances. Further understanding of behaviours and triggers of substance use may be of assistance to enabling support persons to feel more informed about the possibilities of such behaviour and utilise this information in coping (Van Boekel 2013). This unknown and unpredictability of substance use leads to increased levels of stress, anxiety and strain that will continue to exist, as these feared outcomes are constantly upheld against the passing of time as ‘something that might happen’ (Rowe 2012).
Support persons in this study reported that they received little to no information about the individual who they support and their drug use or when they were admitted to hospital. Support persons commonly addressed the shortfall in information by obtaining additional information through online sources. The lack of involvement in decisions was a source of frustration, as support persons in this study thought they could contribute saliently through sharing detailed knowledge about the life of the individual that they supported, provide a deeper insight into the substance use and improve communication between health professionals and family members
Support person involvement in the care and treatment has been recognized as an integral component of mental health care, including substance use services (Gray et al 2009). The
81
increased emphasis on carer participation has to some extent been driven by the shift away from hospitals towards primary care providing mental health treatment in the community. Wrosch, Amir & Miller (2011) discuss the relative failure to support family carers adequately is through the notion of ‘community care is family care’, with the presence of a supportive family member, particularly a spouse or partner, often being essential to maintaining morale and positive adaptation.
Mental health professionals often express interest in collaborative decision making, however, health professionals commonly state that they do not include mental health consumers in decisions because of a perceived lack of capacity (Knowles et al 2016). The findings of the present study demonstrate that exclusion from decision making also extends to carers of those with mental health issues, who have the right to be involved in decision making and arguably have the capacity to make worthwhile contributions. Hence, mental health services may need to reassess the extent to which carers could be more effectively included in decision-making, care and treatment of substance use services.