CARER FOCUS
Enabling the health and wellbeing of carers through district nursing support Michelle Laing, Sally Sprung
Michelle Laing, Professional Lead for Adult Nursing, Sally Sprung, Programme Leader for District Nursing, School of Nursing and Allied Health, Liverpool John Moores University Email: [email protected]
Abstract
Carers provide care because they want to help the people they care about, and because their care recipient could not manage without them. For many carers, looking after their own health, combining caring with work, getting access to training or having time off can be a major challenge. Patients’ and carers’ experiences of home-based care are a key factor in the appraisal of the quality of the professional care services they receive. This article presents the evidence from a literature review that builds a substantial body of knowledge to inform district nursing teams and community nurses to develop a supportive approach towards carers’ needs. The aim of the study was to appraise the published evidence base relating to carers’ needs and how professionals can support carers’ needs when providing care to patients in the community. The studies consistently reported carers’ requirements of practical support and information as a theme across studies, suggesting that effective ways of delivering information and support to caregivers need to be developed and implemented as a matter of priority. It also highlighted the needs of the professionals providing support to carers, to ensure the health and wellbeing needs of carers, to include signposting and referral to avoid reaching crisis point and resultant burnout.
Key Words
w Carers w Health and wellbeing w Support w District nurses w Signposting
346
the fastest growing demographic group, currently doubling in size every decade (DH, 2013a). Family carers are often involved in giving and receiving care—for example, when caring for people with complex, long-term conditions. There are many reasons why adult and young carers have remained hidden and often unsupported when taking on levels of care that they have not been trained to provide. National UK health policy advocates and emphasises carer support in care throughout a patient’s illness and death (DH, 2008; 2010a). The Government recognises the essential contribution of carers who support the independence of other people; key national organisations such as Carers UK and the Prince’s Trust (DH, 2010a) are seeking to empower this hidden group with governmental support. Government papers emphasise the use of integrated care with a strategic needs assessment and a strong personalisation agenda based on emerging evidence of effective early intervention in identifying, involving and supporting carers (DH, 2010b; 2012; 2013a; 2013b). This will present a significant challenge for professionals and organisations supporting carers.
Aims and objectives This literature review appraises the evidence base relating to carers’ needs and nursing professionals and how they can support carers when providing care to patients in the community.The literature was approached in a systematic manner to enable the examination of issues relating to identifying and supporting carers at home to include support from professionals. It also analyses the information and support needs of the professionals providing support to carers, and explores any potential strategies aimed at meeting carers’ needs to ensure the health and wellbeing of carers, to include signposting and referral to avoid reaching crisis point. The aim of the study was to appraise the evidence base relating to carers’ needs and how professionals can support carers’ needs in the community. For the purposes of this review, community patients are people cared for in any environment that is not a hospital. The primary objectives of the literature review were to:
© 2014 MA Healthcare Ltd
T
he Queen’s Nursing Institute (QNI) believes in the best possible nursing for people at home, and is committed to working with the public, nurses and decision-makers to ensure carers’ needs in the community are supported by district nursing teams and community nurses. As part of this work, a literature review was commissioned to explore and analyse the needs of carers. This article presents the resulting evidence from this literature review, which builds a substantial body of knowledge to practically help district nursing teams and community nurses to develop a supportive approach towards carers’ needs. It is estimated that, by 2037, there will be more than 9 million family carers in the UK (Department of Health (DH), 2013b). Many carers will be older people themselves, while looking after children and older relatives. People who are living into late old age form
British Journal of Community Nursing July 2014 Vol 19, No 7
h Journal of Community Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 4, 2015. For personal use only. No other uses without permission. . All rights res
CARER FOCUS
Method
Design and search strategy The study systematically reviewed available literature conducted via electronic searches of research and evidence-based databases via the knowledge platform at the Department of Health using the British Nursing Index (BNI) and the Cumulative Index to Nursing and Allied Health (CINAHL) databases. All of the searches were conducted in May 2013. The search terms used in this review included the following key phrases: w Health and wellbeing of carers w Health-care professionals working with carers w Identification of support needs for carers w Signposting carers to support w The carer’s role w Information of support services for carers w District nurses and carers w Community nurses and carers. The initial search yielded 606 records (see Figure 1). These records were then hand-searched using abstracts and titles to ensure they were relevant to the research aims. Irrelevant or duplicate abstracts and titles were eliminated.
Inclusion and exclusion criteria Studies were eligible for inclusion in the review, provided they reported primary research and presented data relating to carers’ needs and professional support for carers. All study designs were acceptable for inclusion in the review, including quasi-experimental studies, pre-post-intervention designs (observational studies), descriptive studies and qualitative research studies. For the purposes of this review, care was taken to include all aspects of home and community care, including nursing homes and hospices. Only English language studies were included, to avoid translation costs and any cultural misinterpretation. Limitations to dates were also applied, as only articles between 2006 and 2013 were included. Populations eligible for inclusion included any group responsible for the unpaid care of people in the community. This included any caregiver who provided care for an individual and, for the purposes of this article, they are referred to by a variety of terms, including carer, home-based carer, informal carer, informal caregiver, etc. This reflects the inconsistency of the way these terms are used in the literature. Studies examining the carer’s experiences of hospital services were excluded, unless they were considering discharge needs, as the focus of this study was to consider the needs of the carer in the community. Articles were also excluded if they
348
reported descriptively on projects and programmes and had no robust evaluation component.
Organising data The first review of the articles identified on the initial trawl involved a hand search. Titles and abstracts from the publications were screened and articles were removed that were not pertinent to carers’ needs in the community being supported by community nurses and health-care professionals.This process resulted in 105 records being identified as relevant. These data were then analysed and synthesised by comparing and contrasting individual study findings to identify prominent themes. Further analysis (71 articles) produced a narrative synthesis around the original topics corresponding to the headings of ‘carers (generic)’,‘mental health and carers’,‘end-of-life care and carers’, ‘cardiovascular disorders and carers’, ‘learning disabilities and carers’, ‘neurological disorders and carers’ and ‘young carers’. At this stage, no restriction was placed on study design and no specific quality criteria were used to identify studies eligible for inclusion. In order to identify threats to validity, key quality indicators were established. These indicators were based on accepted guidelines for reviewing non-randomised, observational and qualitative literature and included at their core an assessment of each study’s response rate, sample selection process, representativeness and data validity (Khan et al, 2001; Critical Appraisal Skills Programme (CASP), 2010). This standardised data extraction process was used to record the title, context, methodology and findings of each study. Two reviewers independently undertook all study eligibility judgements using the CASP Tool (CASP, 2010), with any disagreement being resolved through the involvement of a third party for arbitration.
Limitations of the review As with all reviews, this article has several limitations. The review was restricted to the BNI and CINAHL databases and was limited to studies published in English. It therefore cannot be absolutely certain that other studies do not exist. The findings presented are tempered by the fact that many of the primary studies included in the synthesis suffered from their own methodological shortcomings. Despite the fact that the majority of eligible studies were from academic and published literature, most were local, single-site investigations involving largely non-representative samples, with a potential for bias. Confidence in the internal validity of some of the findings is therefore limited and the generalisability of results is unclear. It is possible, for example, that unpaid carers and professionals recruited from different geographical or health-care localities may have expressed very different views from those included in the present synthesis. It is also noteworthy that many of the studies initially identified as being potentially relevant to this literature review were subsequently excluded due to weak methodologies, as discussed above. Many of the studies synthesised were local evaluations conducted for disparate readerships. A major limitation to this review was the dearth of material that looked at professional nurses supporting carers. Most research is focused on the needs of carers and not on the needs of the professionals to support them in their role.
© 2014 MA Healthcare Ltd
w Examine the extent and origin of the literature on identifying and supporting carers at home to include professionals (with a specific focus on district nursing, school nursing and general practice nursing teams) w Critically examine the information and support needs of the professionals providing support to carers w Identify potential strategies aimed at meeting carers’ needs to ensure the health and wellbeing needs of carers are identified early and appropriately, with support to include signposting and referral to avoid reaching crisis point.
British Journal of Community Nursing July 2014 Vol 19, No 7
h Journal of Community Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 4, 2015. For personal use only. No other uses without permission. . All rights res
TOPIC CARERHEADER FOCUS
Key findings/themes The available research has consistently reported carers’ requirements for practical nursing support and nursingbased information provision (Gort et al, 2007; Peeters et al, 2010). The impact of a lack of knowledge by carers was also identified as a key concern in carers’ evaluations of their nursing care abilities, and worries about these abilities were discovered in the context of general patient care issues. There are also common concerns because of a lack of knowledge of medications in the literature (Caress et al, 2009; O’Brien et al, 2012). The findings from the appraised 23 journal articles are identified in the appendix (available from the editor upon request). Overall, very little specific information has been reported on carers’ needs and concerns. Both patients and carers were often interviewed together in studies that the authors suggest may have accounted for the dominant focus in the findings on the patient’s needs. In summary, only six studies identified addressed professional involvement with carers and, even then, some of these were peripheral. The prominence of practical support and information as a theme across studies suggests that effective ways of delivering information and support to family caregivers need to be developed and implemented to support carers as a matter of priority (Pinfold et al, 2007; Gerrish, 2008; Couture et al, 2012). These authors identify education and training related to emotional support and medication management as being key concerns for carers. They suggest that flexible initiatives tailored to meet the needs of carers may ultimately confer the greatest benefits, both in terms of carers’ physical and emotional health and the wellbeing of their care recipients. However, despite these needs being identifiable, understandable and logical, they appear to remain unfulfilled. The limited number of studies that examined health professionals’ perspectives also acknowledge deficits in caregiver preparation. District nurses and community nurses typically viewed carers as ill-prepared, both for the fundamental nursing care aspects and the exhausting nature of the role (Gerrish, 2008; Greenwood and Mackenzie, 2010; Jack and O’Brien, 2010). District nurses and community nurses also emphasised the psychological consequences of inadequate caregiver knowledge, which induced carer anxiety and its impact on caregiver confidence (Walsh et al, 2007;Whitehead et al, 2012).
© 2014 MA Healthcare Ltd
District and community nursing 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 nurses was accelerated by an increase of faster throughput of hospital patients, with an emphasis on end-of-life care for patients in their own homes (Jack and O’Brien, 2010; Whitehead et al, 2012). Some studies highlighted roles such as advocacy, fostering patient participation and carer involvement (Unwin et al, 2008; Holdsworth and King, 2011; Van Kempen et al, 2012). Several articles report the perspectives of patients in receipt of care from district or community nurses and other health and
British Journal of Community Nursing July 2014 Vol 19, No 7
606 records identified through databases
71 records screened using CASP tool
Full-text articles assessed for eligibility
Hand search of abstracts and titles—articles relevant to research aims selected, duplicates deleted
Records excluded
Articles excluded: – Not an evaluative study – Not relevant to professional issues
23 In total 6 professionally focused and 17 carers’ needs papers distilled through thematic analysis
– Not English language – Not based in the community
Figure 1. Diagram of the search strategy used to conduct the literature search and review.
social care agencies, but these focused primarily on the meeting of needs and experiences of care-related matters rather than the carer role and the carer support requirement (Walsh et al, 2007;Whitehead et al, 2012).These articles highlight the issue that there is very little research into carer support needs.
Expectations of family carers Some key studies identified that professionals acted on the assumption that family carers would, by choice or default, provide care (Bullard, 2007; Pattenden et al, 2007; Plank et al, 2012). 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 upon nursing services, has been conflated to give a rationale for the withdrawal of community services. The literature 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). These
349
h Journal of Community Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 4, 2015. For personal use only. No other uses without permission. . All rights res
CARER FOCUS
Lack of district nursing support for carers A number of studies purported that family carers were not recipients of district nursing support in their own right, but were dependent upon the cared-for person receiving nursing care (Walsh et al, 2007; Gerrish 2008; O’Brien et al, 2012)— their access to support being conditional upon others (GPs and hospital staff) making appropriate patient referrals. This issue is a key area to be addressed in future, if carers are to receive the support they need to maintain their own health and wellbeing. The literature reviewed did contain a strong theme of carers feeling as though they were being excluded from information and decision-making, leading to 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 have a sense of worth and value in partnership with professionals. Other studies also indicate that community and district nursing teams need to take a more active stance in providing family carer support by adopting a family approach, rather than solely a patient-focused approach, so that family carers can be supported more effectively (Bullard, 2007; Pattenden et al, 2007; Gerrish, 2008; Plank et al, 2012). It is not possible to know whether recommendations from these studies have been further developed to support and enable the health and wellbeing of carers for the future.
Overall view Overall, the results of the studies included in this literature review suggest insufficient preparation and education of staff to support carers, and this could potentially have a substantial impact on carer health and wellbeing. Unpaid 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 over the prospect of performing unfamiliar nursing tasks, inducing stress in many carers (Carmichael and Hulme, 2008; Caress et al, 2009; Freer, 2010; O’Brien et al, 2012).
Areas of district and community nurse support for carers A number of key themes emerged as being helpful for community and district nurses to support carers’ needs better in areas such as:
350
w Assessment of needs, including emotional anxieties w Trust and continuity of care w Communication and understanding around disease process and prognosis w Medication administration w Support with routine nursing tasks w Referral to carer groups, volunteer services and social opportunities w Benefits signposting and advice w Reduction in bureaucracy, navigation of services w Caregiver stress and burnout. These issues highlight the areas for education and training for district and community nurses.
Conclusion 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 the patients 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, this review did highlight a major gap in the literature around the area of how professionals can best support carers with these needs. There is evidence that carers need support guidance and signposting assistance and there is no consideration in the literature of what education, training and skills staff may need to provide this support to carers. Further research is indicated. Indeed, recently the Government has charged the organisations, Skills for Health and Skills for Care, with identifying some toolkits and resources for staff and carers’ activities and support (Skills for Health, 2011). One of the key problems faced is that carers often do not recognise themselves as carers. A caring role can develop gradually over a long period if the first step in the process of carer identification and referral is being neglected by referral agencies such as GPs and hospitals (Fraser, 2012). A recommendation from this review is that there need to be other proactive opportunities for assessment of needs and access to services through simple routine assessment processes by district and community nurses, resulting in information sharing with support agencies and appropriate signposting. The review of the literature indicates that professional, voluntary services and family 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 understanding the experience of carers, and conversations around longterm 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 increase demands on carers (Walsh et al, 2007; Whitehead et al, 2012). As Government policy is to enable more people to be nursed at home, district and community nurses could be instrumental in managing these transitions to reduce disruption to patients
© 2014 MA Healthcare Ltd
studies identified specific characteristics of district nursing support for carers to include enabling, supporting, mediating, care substitution, crisis prevention and crisis intervention.
British Journal of Community Nursing July 2014 Vol 19, No 7
h Journal of Community Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 4, 2015. For personal use only. No other uses without permission. . All rights res
TOPIC CARERHEADER FOCUS 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. A major review of the models to support carers in assisting with the nursing and personal care needs of patients would be timely. 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.This literature review also identifies a distinct gap in service and a lack of leadership and knowledge regarding the needs of carers and how they can be appropriately supported to avoid carer breakdown. District and community nurses express concerns about their confidence to give the right support to carers, and this indicates that they have educational needs of their own (Jack and O’Brien, 2010; Whitehead et al, 2012). They are, however, in 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 difference to a carer of being on the brink of burnout and not being able to cope to having a happy, healthy life, allowing them to continue to do what they want to do—care for their loved ones. BJCN
© 2014 MA Healthcare Ltd
To view the appendix table detailing the results of the literature review, email the editor, Rowan Dennison: [email protected]
Bullard R (2007) A little oasis. Community Care 1696: 28–9 Caress AL, Luker KA, Chalmers KI, Salmon MP (2009) A review of the information and support needs of family carers of patients with chronic obstructive pulmonary disease. J Clin Nurs 18(4): 479–91. doi: 10.1111/j.1365-2702.2008.02556.x Carmichael F, Hulme C (2008) Are the needs of carers being met? J Community Nurs 22(8–9): 4 Critical Appraisal Skills Programme (2010) Critical Appraisal Skills Programme: 10 questions to help you make sense of qualitative research. http://tinyurl.com/ n2mbzmg (accessed 10 June 2014) Couture MF, Ducharme F, Lamontagne J (2012) The role of health care professionals in the decision-making process of family caregivers regarding placement of a cognitively impaired elderly relative. Home Health Care Manag Pract 24(6): 283–91 Department of Health (2008) Carers at the Heart of 21st‐century Families and Communities. http://tinyurl.com/qaf2m8p (accessed 10 June 2014) Department of Health (2010a) Recognised,Valued and Supported: Next Steps for the Carers Strategy. http://tinyurl.com/l5bvnov (accessed 10 June 2014) Department of Health (2010b) Personalising Services and Support for Carers. http:// tinyurl.com/qh7czxs (accessed 10 June 2014) Department of Health (2012) Compassion in Practice: Nursing, Midwifery and Care Staff—Our Vision and Strategy. http://tinyurl.com/lsdmtcl (accessed 10 June 2014) Department of Health (2013a) Care in Local Communities: A New Vision and Model for District Nursing. http://tinyurl.com/q43zfnp (accessed 10 June 2014) Department of Health (2013b) Helping Carers to Stay Healthy. http://tinyurl.com/ cadtect (accessed 10 June 2014) Fraser M (2012) Involving carers makes a difference to outcomes for all. Br J Card Nurs 7(10): 500–1 Freer S (2010) Motor neurone disease: insight into experience of family carers. Endof-Life Care J 4(1): 54–62
British Journal of Community Nursing July 2014 Vol 19, No 7
Gerrish K (2008) Caring for the carers: the characteristics of district nursing support for family carers. Primary Health Care Res Dev 9(1): 14–24. http://dx.doi. org/10.1017/S1463423607000515 Gort AM, Mingot M, Gomez X et al (2007) Use of the Zarit Scale for assessing caregiver burden and collapse in caregiving at home in dementias. Int J Geriatr Psychiatry 22(10): 957–62 Greenwood N, Mackenzie A (2010) An exploratory study of anxiety in carers of stroke survivors. J Clin Nurs 19(13–14): 2032–8. doi: 10.1111/j.1365-2702.2009.03163.x Holdsworth L, King A (2011) Preferences for end of life: views of hospice patients, family carers, and community nurse specialists (CNS) Int J Palliat Nurs 17(5): 251–5 Jack B, O’Brien M (2010) Dying at home: community nurses’ views on the impact of informal carers on cancer patients. Eur J Cancer Care 19(5): 636–42. doi: 10.1111/j.1365-2354.2009.01103.x Khan KS, Riet G, Popay J et al (2001) Undertaking systematic reviews of research on effectiveness. In: Centre for Reviews and Dissemination Report, No. 4, 2nd edn. University of York,York: 1–20 Lévesque L, Ducharme F, Caron C et al (2010) A partnership approach to service needs assessment with family caregivers of an aging relative living at home: a qualitative analysis of the experiences of caregivers and practitioners. Int J Nurs Stud 47(7): 876–87. doi: 10.1016/j.ijnurstu.2009.12.006 O’Brien MR, Whitehead B, Murphy PN et al (2012) Social services homecare for people with motor neurone disease/amyotrophic lateral sclerosis: why are such services used or refused? Palliat Med 26(2): 123–31. doi: 10.1177/0269216311398697 Pattenden JF, Roberts H, Lewin RJ (2007) Living with heart failure; patient and carer perspectives. Eur J Cardiovasc Nurs 6(4): 273–9 Peeters JM, Van Beek AP, Meerveld JH et al (2010) Informal caregivers of persons with dementia, their use of and needs for specific professional support: a survey of the National Dementia Programme. BMC Nurs 9: 9. doi:10.1186/1472-6955-9-9 Pinfold V, Rapaport J, Bellringer S (2007) Developing partnerships with carers through good practice in information-sharing. Mental Health Rev J 12(2): 7–14 Plank A, MazzoniV, Cavada L (2012) Becoming a caregiver: new family carers’ experience during the transition from hospital to home. J Clin Nurs 21(13/14): 2072–82 Queen’s Nursing Institute (2013) Report on District Nurse Education in England, Wales and Northern Ireland. http://tinyurl.com/o2n39mv (accessed 10 June 2014) Skills for Health (2011) Carers Matter: Everybody’s Business. http://tinyurl.com/ ng5vwrc (accessed 10 June 2014) Taggart L, Truesdale-Kennedy M, Ryan A, McConkey R (2012) Examining the support needs of ageing family carers in developing future plans for a relative with an intellectual disability. J Intellect Disabil 16(3): 217–34. doi: 10.1177/1744629512456465 Tan SB, Williams AF, Morris ME (2012) Experiences of caregivers of people with Parkinson’s disease in Singapore: a qualitative analysis. J Clin Nurs 21(15–16): 2235–46. doi: 10.1111/j.1365-2702.2012.04146.x Unwin G, Le Mesurier N, Bathia N, Deb S (2008) Transition for adolescents and young adults with learning disabilities and mental health problems/challenging behaviours: the parent carers’ view. Adv Ment Health Learning Disabil 2(1): 22–8 van Kempen JA, Robben SH, Zuidema SU et al (2012) Home visits for frail older people: a qualitative study on the needs and preferences of frail older people and their informal caregivers. Br J Gen Pract 62(601): 554–60. doi: 10.3399/ bjgp12X653606 Walsh K, Jones L, Tookman A et al (2007) Reducing emotional distress in people caring for patients receiving specialist palliative care. Br J Psychiatry 190(142–7) Whitehead B, O’Brien MR, Jack BA, Mitchell D (2012) Experiences of dying, death and bereavement in motor neurone disease: a qualitative study. Palliat Med 26(4): 368–78. doi: 10.1177/0269216311410900 Zwaanswijk M, van Beek AP, Peeters J et al (2010) Problems and needs of informal caregivers of persons with dementia: a comparison between the initial stage and subsequent stages of the illness process. Tijdschr Gerontol Geriatr 41(4): 162–71 (in Dutch)
KEY points
w There is an acute lack of publications robustly examining the differential
roles of district nurses and other community nursing services to ensure carers’ needs w There is a distinct gap in service regarding the needs of carers and how they can be appropriately supported to avoid carer breakdown w District and community nurses express concerns about their confidence to give the right support to carers, indicating a gap in their own education w District and community nurses are in a unique position to make an enormous difference to the carers’ experience
351
h Journal of Community Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 4, 2015. For personal use only. No other uses without permission. . All rights res
Enabling the health and wellbeing of carers through district nursing support Michelle Laing, Sally Sprung
Michelle Laing, Professional Lead for Adult Nursing, Sally Sprung, Programme Leader for District Nursing, School of Nursing and Allied Health, Liverpool John Moores University Email: [email protected]
Abstract
Carers provide care because they want to help the people they care about, and because their care recipient could not manage without them. For many carers, looking after their own health, combining caring with work, getting access to training or having time off can be a major challenge. Patients’ and carers’ experiences of home-based care are a key factor in the appraisal of the quality of the professional care services they receive. This article presents the evidence from a literature review that builds a substantial body of knowledge to inform district nursing teams and community nurses to develop a supportive approach towards carers’ needs. The aim of the study was to appraise the published evidence base relating to carers’ needs and how professionals can support carers’ needs when providing care to patients in the community. The studies consistently reported carers’ requirements of practical support and information as a theme across studies, suggesting that effective ways of delivering information and support to caregivers need to be developed and implemented as a matter of priority. It also highlighted the needs of the professionals providing support to carers, to ensure the health and wellbeing needs of carers, to include signposting and referral to avoid reaching crisis point and resultant burnout.
Key Words
w Carers w Health and wellbeing w Support w District nurses w Signposting
346
the fastest growing demographic group, currently doubling in size every decade (DH, 2013a). Family carers are often involved in giving and receiving care—for example, when caring for people with complex, long-term conditions. There are many reasons why adult and young carers have remained hidden and often unsupported when taking on levels of care that they have not been trained to provide. National UK health policy advocates and emphasises carer support in care throughout a patient’s illness and death (DH, 2008; 2010a). The Government recognises the essential contribution of carers who support the independence of other people; key national organisations such as Carers UK and the Prince’s Trust (DH, 2010a) are seeking to empower this hidden group with governmental support. Government papers emphasise the use of integrated care with a strategic needs assessment and a strong personalisation agenda based on emerging evidence of effective early intervention in identifying, involving and supporting carers (DH, 2010b; 2012; 2013a; 2013b). This will present a significant challenge for professionals and organisations supporting carers.
Aims and objectives This literature review appraises the evidence base relating to carers’ needs and nursing professionals and how they can support carers when providing care to patients in the community.The literature was approached in a systematic manner to enable the examination of issues relating to identifying and supporting carers at home to include support from professionals. It also analyses the information and support needs of the professionals providing support to carers, and explores any potential strategies aimed at meeting carers’ needs to ensure the health and wellbeing of carers, to include signposting and referral to avoid reaching crisis point. The aim of the study was to appraise the evidence base relating to carers’ needs and how professionals can support carers’ needs in the community. For the purposes of this review, community patients are people cared for in any environment that is not a hospital. The primary objectives of the literature review were to:
© 2014 MA Healthcare Ltd
T
he Queen’s Nursing Institute (QNI) believes in the best possible nursing for people at home, and is committed to working with the public, nurses and decision-makers to ensure carers’ needs in the community are supported by district nursing teams and community nurses. As part of this work, a literature review was commissioned to explore and analyse the needs of carers. This article presents the resulting evidence from this literature review, which builds a substantial body of knowledge to practically help district nursing teams and community nurses to develop a supportive approach towards carers’ needs. It is estimated that, by 2037, there will be more than 9 million family carers in the UK (Department of Health (DH), 2013b). Many carers will be older people themselves, while looking after children and older relatives. People who are living into late old age form
British Journal of Community Nursing July 2014 Vol 19, No 7
h Journal of Community Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 4, 2015. For personal use only. No other uses without permission. . All rights res
CARER FOCUS
Method
Design and search strategy The study systematically reviewed available literature conducted via electronic searches of research and evidence-based databases via the knowledge platform at the Department of Health using the British Nursing Index (BNI) and the Cumulative Index to Nursing and Allied Health (CINAHL) databases. All of the searches were conducted in May 2013. The search terms used in this review included the following key phrases: w Health and wellbeing of carers w Health-care professionals working with carers w Identification of support needs for carers w Signposting carers to support w The carer’s role w Information of support services for carers w District nurses and carers w Community nurses and carers. The initial search yielded 606 records (see Figure 1). These records were then hand-searched using abstracts and titles to ensure they were relevant to the research aims. Irrelevant or duplicate abstracts and titles were eliminated.
Inclusion and exclusion criteria Studies were eligible for inclusion in the review, provided they reported primary research and presented data relating to carers’ needs and professional support for carers. All study designs were acceptable for inclusion in the review, including quasi-experimental studies, pre-post-intervention designs (observational studies), descriptive studies and qualitative research studies. For the purposes of this review, care was taken to include all aspects of home and community care, including nursing homes and hospices. Only English language studies were included, to avoid translation costs and any cultural misinterpretation. Limitations to dates were also applied, as only articles between 2006 and 2013 were included. Populations eligible for inclusion included any group responsible for the unpaid care of people in the community. This included any caregiver who provided care for an individual and, for the purposes of this article, they are referred to by a variety of terms, including carer, home-based carer, informal carer, informal caregiver, etc. This reflects the inconsistency of the way these terms are used in the literature. Studies examining the carer’s experiences of hospital services were excluded, unless they were considering discharge needs, as the focus of this study was to consider the needs of the carer in the community. Articles were also excluded if they
348
reported descriptively on projects and programmes and had no robust evaluation component.
Organising data The first review of the articles identified on the initial trawl involved a hand search. Titles and abstracts from the publications were screened and articles were removed that were not pertinent to carers’ needs in the community being supported by community nurses and health-care professionals.This process resulted in 105 records being identified as relevant. These data were then analysed and synthesised by comparing and contrasting individual study findings to identify prominent themes. Further analysis (71 articles) produced a narrative synthesis around the original topics corresponding to the headings of ‘carers (generic)’,‘mental health and carers’,‘end-of-life care and carers’, ‘cardiovascular disorders and carers’, ‘learning disabilities and carers’, ‘neurological disorders and carers’ and ‘young carers’. At this stage, no restriction was placed on study design and no specific quality criteria were used to identify studies eligible for inclusion. In order to identify threats to validity, key quality indicators were established. These indicators were based on accepted guidelines for reviewing non-randomised, observational and qualitative literature and included at their core an assessment of each study’s response rate, sample selection process, representativeness and data validity (Khan et al, 2001; Critical Appraisal Skills Programme (CASP), 2010). This standardised data extraction process was used to record the title, context, methodology and findings of each study. Two reviewers independently undertook all study eligibility judgements using the CASP Tool (CASP, 2010), with any disagreement being resolved through the involvement of a third party for arbitration.
Limitations of the review As with all reviews, this article has several limitations. The review was restricted to the BNI and CINAHL databases and was limited to studies published in English. It therefore cannot be absolutely certain that other studies do not exist. The findings presented are tempered by the fact that many of the primary studies included in the synthesis suffered from their own methodological shortcomings. Despite the fact that the majority of eligible studies were from academic and published literature, most were local, single-site investigations involving largely non-representative samples, with a potential for bias. Confidence in the internal validity of some of the findings is therefore limited and the generalisability of results is unclear. It is possible, for example, that unpaid carers and professionals recruited from different geographical or health-care localities may have expressed very different views from those included in the present synthesis. It is also noteworthy that many of the studies initially identified as being potentially relevant to this literature review were subsequently excluded due to weak methodologies, as discussed above. Many of the studies synthesised were local evaluations conducted for disparate readerships. A major limitation to this review was the dearth of material that looked at professional nurses supporting carers. Most research is focused on the needs of carers and not on the needs of the professionals to support them in their role.
© 2014 MA Healthcare Ltd
w Examine the extent and origin of the literature on identifying and supporting carers at home to include professionals (with a specific focus on district nursing, school nursing and general practice nursing teams) w Critically examine the information and support needs of the professionals providing support to carers w Identify potential strategies aimed at meeting carers’ needs to ensure the health and wellbeing needs of carers are identified early and appropriately, with support to include signposting and referral to avoid reaching crisis point.
British Journal of Community Nursing July 2014 Vol 19, No 7
h Journal of Community Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 4, 2015. For personal use only. No other uses without permission. . All rights res
TOPIC CARERHEADER FOCUS
Key findings/themes The available research has consistently reported carers’ requirements for practical nursing support and nursingbased information provision (Gort et al, 2007; Peeters et al, 2010). The impact of a lack of knowledge by carers was also identified as a key concern in carers’ evaluations of their nursing care abilities, and worries about these abilities were discovered in the context of general patient care issues. There are also common concerns because of a lack of knowledge of medications in the literature (Caress et al, 2009; O’Brien et al, 2012). The findings from the appraised 23 journal articles are identified in the appendix (available from the editor upon request). Overall, very little specific information has been reported on carers’ needs and concerns. Both patients and carers were often interviewed together in studies that the authors suggest may have accounted for the dominant focus in the findings on the patient’s needs. In summary, only six studies identified addressed professional involvement with carers and, even then, some of these were peripheral. The prominence of practical support and information as a theme across studies suggests that effective ways of delivering information and support to family caregivers need to be developed and implemented to support carers as a matter of priority (Pinfold et al, 2007; Gerrish, 2008; Couture et al, 2012). These authors identify education and training related to emotional support and medication management as being key concerns for carers. They suggest that flexible initiatives tailored to meet the needs of carers may ultimately confer the greatest benefits, both in terms of carers’ physical and emotional health and the wellbeing of their care recipients. However, despite these needs being identifiable, understandable and logical, they appear to remain unfulfilled. The limited number of studies that examined health professionals’ perspectives also acknowledge deficits in caregiver preparation. District nurses and community nurses typically viewed carers as ill-prepared, both for the fundamental nursing care aspects and the exhausting nature of the role (Gerrish, 2008; Greenwood and Mackenzie, 2010; Jack and O’Brien, 2010). District nurses and community nurses also emphasised the psychological consequences of inadequate caregiver knowledge, which induced carer anxiety and its impact on caregiver confidence (Walsh et al, 2007;Whitehead et al, 2012).
© 2014 MA Healthcare Ltd
District and community nursing 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 nurses was accelerated by an increase of faster throughput of hospital patients, with an emphasis on end-of-life care for patients in their own homes (Jack and O’Brien, 2010; Whitehead et al, 2012). Some studies highlighted roles such as advocacy, fostering patient participation and carer involvement (Unwin et al, 2008; Holdsworth and King, 2011; Van Kempen et al, 2012). Several articles report the perspectives of patients in receipt of care from district or community nurses and other health and
British Journal of Community Nursing July 2014 Vol 19, No 7
606 records identified through databases
71 records screened using CASP tool
Full-text articles assessed for eligibility
Hand search of abstracts and titles—articles relevant to research aims selected, duplicates deleted
Records excluded
Articles excluded: – Not an evaluative study – Not relevant to professional issues
23 In total 6 professionally focused and 17 carers’ needs papers distilled through thematic analysis
– Not English language – Not based in the community
Figure 1. Diagram of the search strategy used to conduct the literature search and review.
social care agencies, but these focused primarily on the meeting of needs and experiences of care-related matters rather than the carer role and the carer support requirement (Walsh et al, 2007;Whitehead et al, 2012).These articles highlight the issue that there is very little research into carer support needs.
Expectations of family carers Some key studies identified that professionals acted on the assumption that family carers would, by choice or default, provide care (Bullard, 2007; Pattenden et al, 2007; Plank et al, 2012). 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 upon nursing services, has been conflated to give a rationale for the withdrawal of community services. The literature 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). These
349
h Journal of Community Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 4, 2015. For personal use only. No other uses without permission. . All rights res
CARER FOCUS
Lack of district nursing support for carers A number of studies purported that family carers were not recipients of district nursing support in their own right, but were dependent upon the cared-for person receiving nursing care (Walsh et al, 2007; Gerrish 2008; O’Brien et al, 2012)— their access to support being conditional upon others (GPs and hospital staff) making appropriate patient referrals. This issue is a key area to be addressed in future, if carers are to receive the support they need to maintain their own health and wellbeing. The literature reviewed did contain a strong theme of carers feeling as though they were being excluded from information and decision-making, leading to 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 have a sense of worth and value in partnership with professionals. Other studies also indicate that community and district nursing teams need to take a more active stance in providing family carer support by adopting a family approach, rather than solely a patient-focused approach, so that family carers can be supported more effectively (Bullard, 2007; Pattenden et al, 2007; Gerrish, 2008; Plank et al, 2012). It is not possible to know whether recommendations from these studies have been further developed to support and enable the health and wellbeing of carers for the future.
Overall view Overall, the results of the studies included in this literature review suggest insufficient preparation and education of staff to support carers, and this could potentially have a substantial impact on carer health and wellbeing. Unpaid 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 over the prospect of performing unfamiliar nursing tasks, inducing stress in many carers (Carmichael and Hulme, 2008; Caress et al, 2009; Freer, 2010; O’Brien et al, 2012).
Areas of district and community nurse support for carers A number of key themes emerged as being helpful for community and district nurses to support carers’ needs better in areas such as:
350
w Assessment of needs, including emotional anxieties w Trust and continuity of care w Communication and understanding around disease process and prognosis w Medication administration w Support with routine nursing tasks w Referral to carer groups, volunteer services and social opportunities w Benefits signposting and advice w Reduction in bureaucracy, navigation of services w Caregiver stress and burnout. These issues highlight the areas for education and training for district and community nurses.
Conclusion 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 the patients 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, this review did highlight a major gap in the literature around the area of how professionals can best support carers with these needs. There is evidence that carers need support guidance and signposting assistance and there is no consideration in the literature of what education, training and skills staff may need to provide this support to carers. Further research is indicated. Indeed, recently the Government has charged the organisations, Skills for Health and Skills for Care, with identifying some toolkits and resources for staff and carers’ activities and support (Skills for Health, 2011). One of the key problems faced is that carers often do not recognise themselves as carers. A caring role can develop gradually over a long period if the first step in the process of carer identification and referral is being neglected by referral agencies such as GPs and hospitals (Fraser, 2012). A recommendation from this review is that there need to be other proactive opportunities for assessment of needs and access to services through simple routine assessment processes by district and community nurses, resulting in information sharing with support agencies and appropriate signposting. The review of the literature indicates that professional, voluntary services and family 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 understanding the experience of carers, and conversations around longterm 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 increase demands on carers (Walsh et al, 2007; Whitehead et al, 2012). As Government policy is to enable more people to be nursed at home, district and community nurses could be instrumental in managing these transitions to reduce disruption to patients
© 2014 MA Healthcare Ltd
studies identified specific characteristics of district nursing support for carers to include enabling, supporting, mediating, care substitution, crisis prevention and crisis intervention.
British Journal of Community Nursing July 2014 Vol 19, No 7
h Journal of Community Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 4, 2015. For personal use only. No other uses without permission. . All rights res
TOPIC CARERHEADER FOCUS 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. A major review of the models to support carers in assisting with the nursing and personal care needs of patients would be timely. 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.This literature review also identifies a distinct gap in service and a lack of leadership and knowledge regarding the needs of carers and how they can be appropriately supported to avoid carer breakdown. District and community nurses express concerns about their confidence to give the right support to carers, and this indicates that they have educational needs of their own (Jack and O’Brien, 2010; Whitehead et al, 2012). They are, however, in 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 difference to a carer of being on the brink of burnout and not being able to cope to having a happy, healthy life, allowing them to continue to do what they want to do—care for their loved ones. BJCN
© 2014 MA Healthcare Ltd
To view the appendix table detailing the results of the literature review, email the editor, Rowan Dennison: [email protected]
Bullard R (2007) A little oasis. Community Care 1696: 28–9 Caress AL, Luker KA, Chalmers KI, Salmon MP (2009) A review of the information and support needs of family carers of patients with chronic obstructive pulmonary disease. J Clin Nurs 18(4): 479–91. doi: 10.1111/j.1365-2702.2008.02556.x Carmichael F, Hulme C (2008) Are the needs of carers being met? J Community Nurs 22(8–9): 4 Critical Appraisal Skills Programme (2010) Critical Appraisal Skills Programme: 10 questions to help you make sense of qualitative research. http://tinyurl.com/ n2mbzmg (accessed 10 June 2014) Couture MF, Ducharme F, Lamontagne J (2012) The role of health care professionals in the decision-making process of family caregivers regarding placement of a cognitively impaired elderly relative. Home Health Care Manag Pract 24(6): 283–91 Department of Health (2008) Carers at the Heart of 21st‐century Families and Communities. http://tinyurl.com/qaf2m8p (accessed 10 June 2014) Department of Health (2010a) Recognised,Valued and Supported: Next Steps for the Carers Strategy. http://tinyurl.com/l5bvnov (accessed 10 June 2014) Department of Health (2010b) Personalising Services and Support for Carers. http:// tinyurl.com/qh7czxs (accessed 10 June 2014) Department of Health (2012) Compassion in Practice: Nursing, Midwifery and Care Staff—Our Vision and Strategy. http://tinyurl.com/lsdmtcl (accessed 10 June 2014) Department of Health (2013a) Care in Local Communities: A New Vision and Model for District Nursing. http://tinyurl.com/q43zfnp (accessed 10 June 2014) Department of Health (2013b) Helping Carers to Stay Healthy. http://tinyurl.com/ cadtect (accessed 10 June 2014) Fraser M (2012) Involving carers makes a difference to outcomes for all. Br J Card Nurs 7(10): 500–1 Freer S (2010) Motor neurone disease: insight into experience of family carers. Endof-Life Care J 4(1): 54–62
British Journal of Community Nursing July 2014 Vol 19, No 7
Gerrish K (2008) Caring for the carers: the characteristics of district nursing support for family carers. Primary Health Care Res Dev 9(1): 14–24. http://dx.doi. org/10.1017/S1463423607000515 Gort AM, Mingot M, Gomez X et al (2007) Use of the Zarit Scale for assessing caregiver burden and collapse in caregiving at home in dementias. Int J Geriatr Psychiatry 22(10): 957–62 Greenwood N, Mackenzie A (2010) An exploratory study of anxiety in carers of stroke survivors. J Clin Nurs 19(13–14): 2032–8. doi: 10.1111/j.1365-2702.2009.03163.x Holdsworth L, King A (2011) Preferences for end of life: views of hospice patients, family carers, and community nurse specialists (CNS) Int J Palliat Nurs 17(5): 251–5 Jack B, O’Brien M (2010) Dying at home: community nurses’ views on the impact of informal carers on cancer patients. Eur J Cancer Care 19(5): 636–42. doi: 10.1111/j.1365-2354.2009.01103.x Khan KS, Riet G, Popay J et al (2001) Undertaking systematic reviews of research on effectiveness. In: Centre for Reviews and Dissemination Report, No. 4, 2nd edn. University of York,York: 1–20 Lévesque L, Ducharme F, Caron C et al (2010) A partnership approach to service needs assessment with family caregivers of an aging relative living at home: a qualitative analysis of the experiences of caregivers and practitioners. Int J Nurs Stud 47(7): 876–87. doi: 10.1016/j.ijnurstu.2009.12.006 O’Brien MR, Whitehead B, Murphy PN et al (2012) Social services homecare for people with motor neurone disease/amyotrophic lateral sclerosis: why are such services used or refused? Palliat Med 26(2): 123–31. doi: 10.1177/0269216311398697 Pattenden JF, Roberts H, Lewin RJ (2007) Living with heart failure; patient and carer perspectives. Eur J Cardiovasc Nurs 6(4): 273–9 Peeters JM, Van Beek AP, Meerveld JH et al (2010) Informal caregivers of persons with dementia, their use of and needs for specific professional support: a survey of the National Dementia Programme. BMC Nurs 9: 9. doi:10.1186/1472-6955-9-9 Pinfold V, Rapaport J, Bellringer S (2007) Developing partnerships with carers through good practice in information-sharing. Mental Health Rev J 12(2): 7–14 Plank A, MazzoniV, Cavada L (2012) Becoming a caregiver: new family carers’ experience during the transition from hospital to home. J Clin Nurs 21(13/14): 2072–82 Queen’s Nursing Institute (2013) Report on District Nurse Education in England, Wales and Northern Ireland. http://tinyurl.com/o2n39mv (accessed 10 June 2014) Skills for Health (2011) Carers Matter: Everybody’s Business. http://tinyurl.com/ ng5vwrc (accessed 10 June 2014) Taggart L, Truesdale-Kennedy M, Ryan A, McConkey R (2012) Examining the support needs of ageing family carers in developing future plans for a relative with an intellectual disability. J Intellect Disabil 16(3): 217–34. doi: 10.1177/1744629512456465 Tan SB, Williams AF, Morris ME (2012) Experiences of caregivers of people with Parkinson’s disease in Singapore: a qualitative analysis. J Clin Nurs 21(15–16): 2235–46. doi: 10.1111/j.1365-2702.2012.04146.x Unwin G, Le Mesurier N, Bathia N, Deb S (2008) Transition for adolescents and young adults with learning disabilities and mental health problems/challenging behaviours: the parent carers’ view. Adv Ment Health Learning Disabil 2(1): 22–8 van Kempen JA, Robben SH, Zuidema SU et al (2012) Home visits for frail older people: a qualitative study on the needs and preferences of frail older people and their informal caregivers. Br J Gen Pract 62(601): 554–60. doi: 10.3399/ bjgp12X653606 Walsh K, Jones L, Tookman A et al (2007) Reducing emotional distress in people caring for patients receiving specialist palliative care. Br J Psychiatry 190(142–7) Whitehead B, O’Brien MR, Jack BA, Mitchell D (2012) Experiences of dying, death and bereavement in motor neurone disease: a qualitative study. Palliat Med 26(4): 368–78. doi: 10.1177/0269216311410900 Zwaanswijk M, van Beek AP, Peeters J et al (2010) Problems and needs of informal caregivers of persons with dementia: a comparison between the initial stage and subsequent stages of the illness process. Tijdschr Gerontol Geriatr 41(4): 162–71 (in Dutch)
KEY points
w There is an acute lack of publications robustly examining the differential
roles of district nurses and other community nursing services to ensure carers’ needs w There is a distinct gap in service regarding the needs of carers and how they can be appropriately supported to avoid carer breakdown w District and community nurses express concerns about their confidence to give the right support to carers, indicating a gap in their own education w District and community nurses are in a unique position to make an enormous difference to the carers’ experience
351
h Journal of Community Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 4, 2015. For personal use only. No other uses without permission. . All rights res
