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Supporting Carers A number of studies purported that family carers were not necessarily recipients of district nursing support in their own right but were dependent upon the cared- for person receiving nursing care (Walsh et al., 2007; O’Brien et al., 2012; Gerrish, 2008). Their access to support is conditional upon others, for example, GPs and hospital staff making appropriate patient referrals to district nursing and commu- nity nursing teams. This issue is a key area to be addressed in the future if carers are to receive the support they need to maintain their own health and well-being. The literature reviewed did contain a strong theme of carers feeling that they were being excluded from information and decision making which led to a sense of little worth and value in partnership and social isolation, with potential financial hardship and loss of employment. The professional advocacy role to support carers was seen as a significant aspect of support and control for patients and carers, ensuring they do have a sense of worth and value in partnering care with professionals.
Other studies also indicated that community and district nursing teams need to take a more active stance in providing family carer support by adopting a broader family approach, rather than solely a patient-focused approach in order that family carers might be supported more effectively (Bullard, 2007; Plank et al., 2012; Pat- tenden et al., 2007; Gerrish, 2008). This advice/support is especially required in a constantly changing world of modern technologies that are more frequently used to support care at home.
Overall, these findings relating to the needs of adult carers (see Chapter 17) were reported by Laing and Sprung (2014) following the appraisal of 23 journal articles.
The results of the studies included in this literature review suggest insufficient prep- aration and education of community and hospital staff to support carers and this could potentially have a substantial impact on carer health and well-being. Infor- mal caregivers often experience a negative health and financial impact as a result of their caring responsibilities (Carmichael and Hulme, 2008; Lévesque et al., 2010).
In particular, carers who find it difficult to access support services report feelings of burnout and exhaustion (Bullard, 2007; Freer, 2010). Without adequate provision of information, families can feel out of control, disempowered to make decisions and unable to cope with the physical care of a relative on a day-to-day basis (Zwaanswijk et al., 2010; O’Brien et al., 2012). Many studies also highlight that, in the absence of adequate support or guidance, many carers learn to cope with unpaid caregiving through a process of ‘trial and error’ with day-to-day tasks, with carers assuming a significant emotional component with the prospect of performing unfamiliar nurs- ing tasks inducing stress in many carers (O’Brien et al., 2012; Freer, 2010; Carmi- chael and Hulme, 2008; Caress et al., 2009).
Some key studies identified that professionals acted on the assumption that fam- ily carers would, by choice or default, provide care (Bullard, 2007; Plank et al., 2012;
Pattenden et al., 2007). This notion of the family or carer being used as a means of promoting ‘self-care’ appeared to be conflated with the notion that the patient no longer needed community services. The families’ ability to care for the patient, thereby reducing the patient’s dependence from nursing services has been conflated to give a rationale for withdrawal of community services. The literature has
indicated that the decision for providing family carer support appears to be based largely on service capacity rather than on carer needs and preferences (Gerrish, 2008; Taggart et al., 2012; Tan et al., 2012).
Education and training related to emotional support and medication manage- ment were identified as key concerns for carers. Studies that examined health pro- fessionals’ perspectives also acknowledged deficits in caregiver preparation. District nurses and community nurses typically viewed carers as ill-prepared both for the fundamental nursing care aspects and the far-reaching nature of the role (Jack and O’Brien, 2010; Gerrish, 2008; Greenwood and Mackenzie, 2010). District nurses and community nurses also emphasised the psychological consequences of inade- quate caregiver knowledge, which induced carer anxiety and its impact on care- giver confidence (Whitehead et al., 2012; Walsh et al., 2007).
A number of publications considered the district and community-nursing role in supporting patients who had been discharged at a much earlier point of the care pathway. This pressure on carers and district and community nursing teams was accelerated by an increase of faster throughput of hospital patients mostly with an emphasis on end-of-life care for patients in their own homes (Jack and O’Brien, 2010; Whitehead et al., 2012). The work by Laing and Sprung (2013) and Sprung and Laing (2015) also highlights the issue that there has been very little research around carer support needs. However, they identified specific recommendations in relation to the characteristics of district nursing support for carers to include enabling, sup- porting, mediating, care substitution, crisis prevention and crisis intervention.
A number of key themes emerged as helpful for community and district nursing teams to better support carers’ needs in areas as shown in Table 9.4. These issues highlight areas for education and training for community and district nursing teams.
It is evident from the literature that a high proportion of carers have significant health problems themselves, often exacerbated by their caring role. However, the needs of this group are incredibly under-researched when compared with the paid workforce or patient groups themselves. Key difficulties experienced by carers are feelings of being excluded and loss of control, social isolation, financial hardship and loss of employment as well as their own emotional and health problems. Within the context of carers’ support requirements a major gap in the literature around the area of how professionals can best support carers with these needs has been Table 9.4 Key themes to better support the needs of carers
• Assessment of needs to include emotional anxieties
• Trust and partnership relationships with healthcare staff to ensure continuity of care
• Communication and understanding around disease process and prognosis
• Knowledge and understanding around medication and medication administration
• Support with personal care and routine nursing tasks
• Referral to carer groups, volunteer services and social opportunities
• Benefits advice and signposting
• Reduction in bureaucracy, easier navigation of services
• Recognising carer stress and burnout
Source: Laing M and Sprung S (2013) The Queen’s Nursing Institute Carers Project Literature Review: Working with Health Care Professionals to Increase Carer Awareness, Identification and Referral. London: QNI.
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Supporting Carers highlighted. There is evidence that carers need support, guidance and signposting assistance, and there is no consideration in the literature of what education, train- ing and skills staff may need to provide this support to carers. Further research is indicated. However, over recent years the government has charged the organisa- tions Skills for Health and Skills for Care with identifying some resources for staff and carers’ activities and support (Skills for Health, 2011).
One of the key problems faced is that carers do not often recognise themselves as carers. A caring role can develop gradually over a long period and the first step in the process of carer identification and referral is now being identified by formal agencies such as GPs and hospitals (Fraser, 2012). A recommendation from Fraser’s work is that there needs to be other proactive opportunities for carer identification, assessment of needs and access to services through simple routine assessment pro- cesses by community and district nursing teams resulting in information sharing with support agencies and appropriate signposting.
The review of the literature indicates that professional, voluntary services and fam- ily carers need to work together effectively, with a clear role for nurses in undertaking assessments, giving information and providing other support (Zwaanswijk et al., 2010; O’Brien et al., 2012). Many health professionals feel unprepared for under- standing the experience of carers and conversations around long-term conditions or end-of-life care can be challenging for staff. There is also evidence that the transitions into and out of care settings are managed poorly, and this increases the demands on carers (Whitehead et al., 2012; Walsh et al., 2007). As government policy supports and enables more people to be nursed at home, district and community nurses could be instrumental in managing these transitions to reduce stress and disruption to patients and carers. District nurses in particular are uniquely placed to play a critical role in minimising the strain on carers and families as they have the ability to ensure integration between home caring and professional support (QNI, 2013).
The topic of carer identification, information and support within district and community nursing services appears to be under-researched. It is timely for a major review of the models to support carers in assisting with the nursing and personal care needs of patients. This would in turn lead to a better understanding of the tools and resources district and community nursing teams working in primary care need to successfully engage with carers to support them in this unique and challenging role (DH, 2013a). In summary there is a lack of publications that robustly examine the differential roles of district nurses and other community nursing services to ensure carers’ needs in community nursing teams are being supported adequately.
A review of the literature also identifies a distinct gap in service and a lack of leader- ship and knowledge about the needs of carers and how carers can be appropriately supported to avoid carer breakdown (Laing and Sprung, 2013).
District and community nurses express concerns about their confidence to give the right support to carers, and this clearly indicates that they have education needs of their own (Jack and O’Brien, 2010; Whitehead et al., 2012). They do, however, have a unique position to make an enormous difference to the carers’ experience by providing the link between carer organisations, education, benefits and support.
This could mean a real difference to a carer on the brink of burnout and not being able to cope towards having a happy healthy life allowing the carer to continue to do what he or she wants to do, care for his or her loved ones.
Agencies
A voluntary agency, usually a charity or grant-funded body, provides help to people with a particular need. The Princess Royal Trust for Carers would be an example of a voluntary agency that provides help for carers. The aim of voluntary and charita- ble agencies in relation to carers is to make a practical and positive difference through the provision of useful information, carer relief, a listening ear, support groups, respite care and everyday support to all carers who need it. These agencies have the carer and the dependent person at the centre of their philosophy and are often run by carers themselves or their representatives. This gives a significant and informed insight into the needs of carers.
Voluntary and charitable organisations are ideally placed to empower carers.
However, as the carer role increases the skills that carers need, such as moving and handling training, health education, definition of carer role and responsibilities, will be provided. One of the overall benefits of voluntary agencies is that they are less bureaucratic and able to respond to need quickly.
A statutory agency (or in Scotland Public Body) is one provided under law and is usually the responsibility of a Local Authority or Central Government department.
These agencies (voluntary, charitable, statutory and public) work slightly differently from country to country and between localities. However, it remains important, especially in the ever-changing face of healthcare provision, that agencies work together for the common good of the patient. They need to share information, com- municate effectively and be aware of the others’ roles and responsibilities.
Reflection point
Sue and Mike have been married for 18 years and have two children, Chloe aged 10 and Caitlin aged 14. Mike was a successful businessman until recently, when he was forced to sell the business because he was unable to manage it.
Mike was diagnosed with multiple sclerosis 13 years ago. His mobility is reduced and he mobilises using an electric wheelchair, requiring assistance from his wife Sue to maintain personal hygiene and to dress, and he requires significant emotional support. Mike has recently become anxious and emo- tional, which Sue says has had an impact on the children.
The district nurse has been called in to discuss intermittent catheterisation with Mike. She has not met the family before because Jean has tried to protect the home environment from medical and healthcare equipment and personnel.
Sue does not recognise herself as a carer because she thinks that in doing so it will confirm her husband’s frailty, while also confirming to her that he is deteriorating. She fears it may also change their relationship.
ACTIVITY 9.6
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Further Reading
CONCLUSION
The future of caring in the community, with an ageing population and more people living with long-term conditions, mental health issues or substance misuse, is being taken seriously by government and service providers throughout Europe.
The important issues of carer identification, assessment, education and collab- orative partnership have been acknowledged in this chapter, along with an explora- tion of the definition of ‘carer’. There has been opportunity to gain an understanding of carer identity and appreciate who may become a carer. There has also been a chance to consider some aspects of the caring role and consider the financial and emotional impacts that caring has on young and adult carers.
The role and contribution carers make to society and the personal and financial issues they experience have been explored. The exhaustive nature of the caring role has been highlighted along with recognition of the importance of the community nurse’s role in the identification, assessment and support of carers.
The role of assessment and support by an educated, skilled multiprofessional health and social care team is valued as fundamental in meeting the needs of carers and promoting the carer’s ability to cope. Governments are funding and champion- ing charities and voluntary organisations which are essential providers of services and support for carers. Although the picture can seem daunting, there are constant changes taking place in the world of technology with telehealth, social networking and electronic care applications and packages making care at home more feasible and the responsibility of caring lighter, enabling carers and patients, although phys- ically isolated, to access support and maintain communication with the world around them.
FURTHER READING
Carers’ Strategy for Wales UK – Action Plan. 2007. http://www.asdinfowales.co.uk/
resource/9_0_carers_strategy-e.pdf (Accessed 14/6/17).
Carers UK (2014) Carers Rights Guide 2014/15 Looking After Someone. Carers UK.
Department of Health (1998) ‘They Look After their Own, Don’t They?’ Inspection of Community Care Services for Black and Ethnic Minority Older People. London: The Department of Health Publications.
Mutch K (2010) In sickness and in health: Experience of caring for a spouse with MS.
British Journal of Nursing 19:214–9.
Obadina S (2012) Parental mental illness: Effects on young carers. British Journal of School Nursing 3:135–9.
•
What assessments need to be carried out in this home?•
What support would you suggest introducing to this family?•
What other agencies in your area would be appropriate to help Sue, Mike and the children?•
What skills, values and behaviours would the district nurse need to apply in this situation?ACTIVITY 9.6
Rees J, O’Boyle C and MacDonagh R (2001) Quality of life: Impact of chronic illness on the partner. Journal of the Royal Society of Medicine 94:563–6.
The Scottish Government (2010) Carers Strategy. http://www.gov.scot/Publications/2010/
07/23153304/0 (Accessed 14/06/17).
FURTHER RESOURCES
http://alzheimers.org.uk/site/index.php www.ageuk.org.uk
www.barnardos.org.uk/what_we_do/our_projects/young_carers.htm www.carersuk.org
www.carersinformation.org.uk www.diabetes.org.uk
www.dementiacarer.net/#
www.gov.uk/government/uploads/system/uploads/attachment_data/file/329867/Carers_
Pathway.pdf
www.gov.uk/government/uploads/system/uploads/attachment_data/file/299270/Young_
Carers_pathway_Interactive_FINAL.pdf
www.macmillan.org.uk/Cancerinformation/Ifsomeoneelsehascancer/CaringForSomeone.aspx www.macmillan.org.uk/Cancerinformation/Ifsomeoneelsehascancer/Youngcarers/
Youngcarers.aspx www.mssociety.org.uk
www.magonlinelibrary.com/doi/full/10.12968/bjcn.2014.19.7.346
https://professionals.carers.org/working-mental-health-carers/triangle-care-mental-health www.qni.org.uk/supporting_carers/carers_project_resources
www.qni.org.uk/docs/Young_Carers_Lit_Review.pdf www.qni.org.uk/docs/Carers_Literature_Review.doc www.schoolhealthstreet.co.uk/
www.youngcarers.net
REFERENCES
Association of Directors of Adult Social Services (ADASS) and the Association of Directors for Children’s Services (ADCS) (2009) Working Together to Support Young Carers—A Model Local Memorandum of Understanding between Statutory Directors for Children’s Services and Adult Social Services. ADASS and ADCS.
Buhr GT, Kuchibhatla M and Clipp EC (2006) Caregivers’ reasons for nursing home placement: Clues for improving discussions with families prior to the transition.
Gerontologist 46:52–61.
Bullard R (2007) A little oasis. Community Care 1696:28–9.
Carers UK (2014a) Carers Rights Guide 2014/15 Looking After Someone. London: Carers.
Carers UK (2014b) State of Caring 2014. London: Carers.
Carers UK (2015) Making life better for carers. (Accessed 14 November 2015) www.
carersuk.org/?gclid=CMyZpMaVkMkCFYoEwwodaP8GhA.
Caress A, Luker K, Chalmers K and Salmon M (2009) A review of the information and support needs of family carers of patients with chronic obstructive pulmonary disease.
Journal of Clinical Nursing 18(4):479–91.
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