The Queen’s Nursing Institute
Carers Project
Literature Review by Michelle Laing and Sally Sprung
Working with Health Care Professionals to Increase Care Awareness,
Identification and Referral
Contents:
Page
Introduction
2
Aims and Objectives
3
Methods
3
Inclusion and Exclusion Criteria
4
Search Outcome Table
5
Discussion
6
Key Findings
7
Health Professional Perspectives
8
Health Professional Perspectives Literature Review Table
9
Conclusion
13
References
14
1
Introduction
The Queen’s Nursing Institute (QNI) is dedicated to improving the nursing care of people in their
own homes and communities. The QNI recognises that carers play a huge role in supporting people
to live at home who otherwise would not be able to. It is in the interests of patients, carers, and
healthcare professionals if nurses and carers work together as effectively as possible. With this in
mind, the QNI has undertaken a project to identify the needs of carers in the community and how
they may best be supported by District Nurses and their teams.
As part of this work, a literature review was undertaken to explore and analyse the needs of carers.
This paper presents the resulting evidence from a focused scoping exercise that builds a substantial
body of knowledge to help District Nursing teams and other community nurses to develop a
focussed approach towards carers’ needs.
There are 5 strands to this work:
1. National key stakeholder engagement
2. Consultation with key stakeholders identified from the Queen’s Nurse network, including
District Nurses, School Nurses and General Practice Nurses,
3. Resource development
4. Building on the resources previously developed as part of the carers' strategy which includes:
o A review of current resources available to nurses; to identify gaps in resources available
and test resources developed with carers’ and professional groups;
o Production of learning materials to support early identification of carers’ needs and to
provide appropriate sign posting;
o Resource development that is fit for purpose to reach District Nursing teams, School
Nurses, General Practice and other community nurses.
5. Education and training;
o Review of current Nursing and Midwifery Council (NMC) ‘Standards for specialist
education and practice’ (NMC 2001) to prepare specialist community practitioner nurses
and make recommendations;
o Champion and network development;
o Link to the national District Nursing, Community Nurse and School Nurse Development
programmes ;
o Sharing innovation and dissemination of good practice of what works through collation
of examples of good practice;
o A literature review of current evidence of nurses providing support to carers.
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 2008a,
DH 2008b, DH 2010a). The Government recognises the valuable contribution of carers who support
the independence of other people; and they seek to empower this hidden group by supporting key
national organisations such as Carers UK and Carers Trust (DH 2010a). However, contemporary
Government papers emphasise the use of integrated care with strategic needs assessment and a
strong personalisation agenda based on emerging evidence of effective early intervention in
identifying, involving and supporting carers (DH 2010b, DH 2012, DH 2013a, DH 2013b).
2
Carers provide care because they want to help the people they care about and because their child,
partner, relative or friend could not manage without that help. They often have to juggle the support
and care they give with other responsibilities, in a difficult balancing act. For many carers, looking
after their own health, combining caring with work, getting access to training or simply having time
to take a break or go away for a weekend can be a major challenge. It is these aspects of carers’
needs that could be better supported and navigated with the assistance of the nurses and
healthcare professionals that they come into contact with.
The likelihood of any individual achieving this outcome will depend upon the provision of adequate
support for those providing the bulk of home-focussed care (Plank, Mazzoni et al., 2012, Greenwood
and Mackenzie 2010). The development of basic caring skills among informal caregivers is important.
Patients’ and carers’ experiences of home-based care have been identified as a key factor in the
appraisal of the quality of the professional care services they receive (O’Brien, Whitehead et al.,
2012, Jack and O’Brien, 2010). Nevertheless, despite recognition of these experiences, previous
studies have focussed predominantly on interventions and information provision for carers and
patients and not necessarily on the professional needs of the health care practitioner engaged to
support them (O’Brien, Whitehead et al., 2012, Jack and O’Brien, 2010, Plank, Mazzoni, et al., 2012,
Greenwood and Mackenzie, 2010 ). Therefore, the practically-orientated support needs of informal
carers, such as the skills required to provide physical care, will be highlighted through systematic
attention in this literature review.
Aims and objectives
The aim of this study was to appraise the published evidence base relating to professionals and how
they can support carers’ needs when providing care to patients in the community. For the purposes
of this review community patients are people cared for in any environment that was not a hospital.
The primary objectives of the literature review were to (i) explore the extent and origin of the
literature relating to identifying and supporting carers by community nurses (with a specific focus on
District Nursing, School Nursing and General Practice Nursing teams) within the community, (ii)
identify the information and support needs of the professionals providing support to carers, (iii)
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 sign posting and
referral to avoid reaching crisis point and (iv) identify key areas of research where further work is
needed to understand and improve the practical capabilities of these informal care providers by
identifying a range of practice development resources and practical tools to support engagement
activities within District Nursing teams, Community Nursing Services/School Nursing and General
Practice Nursing in GP practices. This will improve joint work between primary care and other care
settings (for example hospital services) to promote integration and an awareness of meeting the
health and wellbeing needs of carers.
Methods
 Design and search strategy: This 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 (CINHAL) Databases. All of the searches
were conducted in May 2013. The search terms used in this review included the following
key words;
 Health and wellbeing of carers
 Knowledge of local voluntary support for healthcare professionals
 Opportunities for healthcare professionals to engage with carers
 Issues that healthcare professionals believe are affecting carers
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Healthcare professionals working with carers
Working with carers
Levels of understanding for carers
Supporting carers
Engaging with carers
Identification of support needs for carers
Sign posting carers to support
Issues that are important to carers
Issues that carers face
The carer’s role
Concerns for carers
Issues for new carers
Supporting carers in the local environment
Support available for carers at a local level
Awareness of the need to support carers
Government policy in relation to carers
Definition of a carer
Information of support services for carers
District nurses and carers
Community nurses and carers
Identification of carers’ needs
Addressing carers’ health needs
Addressing carer’s needs
Good practice and carers in the community
The initial search yielded six hundred and six records that were identified through the BNI and
CINHAL databases using the stated key words. 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 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 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, and only papers between 2006 and 2013
were included. Populations eligible for inclusion included any group responsible for the informal
care of people in the community. This included any non-professional caregiver who provided care
for an individual and for the purposes of this paper 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 also excluded. Papers were also excluded if they reported descriptively on projects
and programmes and had no robust evaluation component.
The first review of the papers identified by the initial automatic trawl involved a hand search.Titles
and abstracts from the publications were screened and papers were removed that were not
4
pertinent to carers needs in the community being supported by community nurses and health care
professionals. This process resulted in one hundred and five records being identified as relevant.
This data was then analysed and synthesised by comparing and contrasting individual study findings
to identify prominent themes. This process produced a narrative synthesis around topics
corresponding to the headings of Carers (generic), Mental Health and Carers , End of Life Care and
Carers, Cardio-Vascular Disorders and Carers, Learning Disabilities and Carers, Neurological Disorders
and Carers and Young Carers. A composite list of these findings grouped under the headings
identified above can be found in APPENDIX ONE (n=71). No restriction was placed on study design
and no specific quality criteria were used to identify studies eligible for inclusion. To identify threats
to validity, key quality indicators were established. These 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, Riet, et al., 2001, CASP 2010).
A 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 Critical Appraisal Skills Programme Tool (CASP 2010) with any disagreement being resolved
through the involvement of a third party for arbitration.
fHealth2011
Discussion
This review has several limitations. The review was restricted to the BNI and CINHAL databases and
limited to studies published in English. It therefore cannot be absolutely definite 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 unclear. However, it is possible, for example, that informal carers and professionals
recruited from different geographical or healthcare localities may have expressed very different
views to 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 being synthesised were local evaluations conducted across different countries
for disparate readerships. The available research has, as this review shows, consistently reported
that carers have requirements for practical nursing support and nursing-based information provision
(Peeters, Van Beek, et al., 2010, Gort, Mingot, et al., 2007, Given, Sherwood, et al., 2008). However,
despite being both understandable and logical, these requests often remain unfulfilled.
The prominence of this theme across studies suggests that effective ways of delivering information
and support to family caregivers needs to be developed and implemented to aid carers as a matter
of priority (Gerrish, 2008, Couture, Ducharme, et al., 2012, Pinfold, Rapaport, et al., 2007). Current
studies suggest that these interventions should include as a minimum, education and training
related to emotional support and medication management. Flexible initiatives that are tailored to
meet the needs of carers may ultimately confer the greatest benefits, both in terms of carers’
physical and emotional health and the well-being of their care recipients. Evidence assimilated
within this review has clearly demonstrated that nurses and other health care providers could better
assist home-based carers by providing the information and feedback necessary to undertake often
basic practical nursing tasks.
5
Within the context of carers’ support requirements, this review did highlight a major gap in the
literature around how professionals can best support carers. There is clear evidence that carers need
support, guidance and signposting assistance, but there is no consideration in the literature of what
education, training and skills staff may need to provide this support to carers. Further qualitative
research is clearly indicated.
However more recently the Government has charged the two organisations Skills for Health and
Skills for Care with identifying some tool kits and resources for care activities and support (Skills for
Health 2011). Skills for Health does have some basic toolkits available for staff and carers to support
them.
Key findings
Some key studies identified that professionals acted on the assumption that family carers would, by
choice or default, provide care (Bullard, 2007, Plank, Mazzoni, et al., 2012, Pattenden, Roberts, et al.,
2007). Family carer support has also been conceptualized as a means of promoting self-care and
reducing the patient’s dependence from nursing services (Gerrish, 2008). The rationale for providing
family carer support appears to be based largely on service capacity rather than on carer needs and
preferences (Gerrish, 2008, Sorrell, 2007, Taggart, Truesdale-Kennedy, et al., 2012, Tan, Williams, et
al., 2012). Gerrish (2008) identified specific characteristics of District Nursing support for carers
which include: enabling, supporting, mediating, care substitution, crisis prevention and crisis
intervention. They 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. This in turn
was conditional upon others (General Practitioners and hospital staff) making appropriate patient
referrals. There is some indication from the studies examined that District Nurses and their 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 in order that family carers might be supported more
effectively (Bullard 2007, Plank, Mazzoni et al., 2012, Pattenden, Roberts, et al., 2007, Gerrish, 2008).
The synthesised results of the seventy-one studies included in this literature review suggest that
insufficient preparation and education of staff to support carers will have a substantial impact on
Carer wellbeing (Carmichael and Hulme, 2008). Informal caregivers often experience the progressive
and often long term nature of providing home-based care as both physically and mentally
challenging (Lévesque, Ducharme, et al., 2010). In particular, carers who find it difficult to access
support services report feelings of burnout and exhaustion (Bullard 2007, Freer, 2012). More
generally, home caregivers frequently express considerable difficulties related to the feelings they
experience caring for their loved ones, and significant difficulties dealing with emotional and
technical problems relating to their caring duties. Without an adequate provision of information,
families typically 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, Van Beek, et al., 2010, O'Brien,
Whitehead, et al., 2012). Multiple studies highlight that, in the absence of adequate support or
guidance, many carers learn to cope with informal caregiving through a process of ‘trial and error’
with day-to-day tasks, assuming a significant emotional component, with the prospect of performing
unfamiliar nursing tasks inducing stress in many carers (O'Brien, Whitehead, et al., 2012, Otis-Green
and Juarez 2012, Freer, 2012 Carmichael and Hulme, 2008, Caress, Luker, et al., 2009).
Adverse effects of incorrect caregiving have been identified as a key concern in carers’ evaluations of
their nursing care abilities, and worries about these have been found in the context of general
6
patient care issues. Another common concern emanating from the literature is a lack of knowledge
of medications (Caress, Luker, et al., 2009, O'Brien, Whitehead, et al., 2012, Hill, 2008).
Health Professional Perspectives
The limited number of studies that examined health professionals’ perspectives also acknowledged
deficits in caregiver preparation, (Professional Perspectives table below - Page 10). District Nurses
and community nurses typically viewed carers as ill-prepared both for the fundamental nursing care
aspects and the exhaustive nature of the role (Jack, O’Brien 2010, Gerrish, 2008, Greenwood and
Mackenzie, 2010 ). District Nurses and Community nurses also emphasise the psychological
consequences of inadequate caregiver knowledge, which induces carer anxiety and impacts on
caregiver confidence (Whitehead, O'Brien, et al., 2012, Walsh, Jones et al., 2007).
7
Health
Professional
Perspectives:
AUTHOR
(Gerrish 2008)
DATE
JOURNAL
METHOD
n
TITLE/AIM/KEY OUTCOMES
2008
Primary Health
Care Research
and
Development
Ethnographic
study. A
participant
observational
study involving
fieldwork and indepth interviews
with six district
nursing teams
undertaken over
a 12-month
period.
n=6
District
Nursing
Teams.
(Greenwood and
Mackenzie 2010)
2010
J Clin Nurs
Prospective,
longitudinal,
descriptive study
using Hospital
Anxiety and
Depression Scale
n=45 carers
"Caring for the carers: The characteristics of district nursing support for
family carers."
This paper presents findings that examined how qualified district nurses’
conceptualized their role in relation to family carers and how they
performed this aspect of their role. Family carer support was considered
as a means of promoting self-care and the patient’s independence from
nursing services. The rationale for providing family carer support was
based largely on service capacity rather than on carer needs and
preferences. Six characteristics of district nursing support for carers were
identified: enabling, supporting, mediating, care substitution, crisis
prevention and crisis intervention. Family carers were not recipients of
district nursing support in their own right but were dependent upon the
cared-for person receiving nursing care. As the scope of home-based
nursing continues to increase, district nurses need to take a more active
stance in providing family carer support and adopt a family rather than
patient focused approach in order that family carers might be supported
more effectively.
“An exploratory study of Anxiety in Carers of Stroke Survivors”
This study investigated anxiety in informal carers of stroke survivors.
Background. Informal carers, also called caregivers, play a vital role in
supporting stroke survivors. Emotional distress is also commonly reported
but anxiety has received less attention than depression.
Results indicated carers were more likely to have scores indicating anxiety
than depression. Fourteen carers at one month and eleven at three
months fell into both anxious and depressed categories.Concluding that
anxiety is an important issue very early in caring whilst other research
suggests it remains prevalent for many months. Given the significant role
carers play in rehabilitation of stroke survivors, greater recognition of
8
their emotional state is required. Relevance to clinical practice. Nurses
working in the community are ideally placed to identify and support
carers suffering from anxiety.
AUTHOR
(Holdsworth,
King 2011)
DATE
2011
JOURNAL
International
Journal
Palliative
Nursing
METHOD
Qualitative
n
Purposive
sample:
6 CNS
5 patients
5 Carers
5 Bereaved
carers
TITLE/AIM/KEY OUTCOMES
Preferences for end of life: views of hospice patients, family carers, and
community nurse specialists (CNS)
Sample from 3 hospices
- Preferences were not always a primary goal of care planning
(CNS)
- - Having more knowledge about what to expect of the dying process,
knowing wishes of relative and understanding the role of hospice and
palliative care could improve the experience of events leading up to
death (Service users – particularly bereaved carers)
(Jack, O’Brien
2010)
2010
European
Journal of
Cancer Care
Qualitative design
2x focus
groups –
DNs and
Community
Specialist
palliative
Care
Nurses
from two
Trusts in
NW
England.
Dying at Home: Community Nurses views on the impact of informal carers
on cancer patients
Informal carer burden was the key reason for prompting hospital
admission
Recommendations – development of a carer assessment tool with
appropriate supportive interventions.
9
AUTHOR
(Unwin, Le
Mesurier et al.
2008)
DATE JOURNAL
2008 Advances in
Mental Health
and Learning
Disabilities.
METHOD
Qualitative
Focus group
n
10
TITLE/AIM/KEY OUTCOMES
“Transition for Adolescents and young adults with learning disabilities and
mental health problems / challenging behaviours the parent carers view.”
The study concluded that services were not responsive to the needs of
carers of people with MH problems. Carers felt marginalised and isolated.
They found the system and personnel within it obstructive and unhelpful.
Carers also felt that their expert knowledge was disregarded by
healthcare professionals.
(Van Kempen,
Robben et al.
2012)
2012
A qualitative
study including
interviews with
frail older persons
and their informal
caregivers. Semistructured
interviews using a
grounded theory
approach.
n=11 frail
older
people
"Home visits for frail older people: a qualitative study on the needs and
preferences of frail older people and their informal caregivers.”
This study explores the views and needs of community-dwelling frail older
people concerning home visits. Most participants emphasised the
importance of home visits for frail older people. They felt that it would
give older people the personal attention they used to receive from GPs
but miss nowadays. Most stated that this would give them more trust in
GPs. Participants stated that trust is one of the most important factors in
a good patient-professional relationship. Further, participants preferred
home visits to focus on the psychosocial context of the patient. Patients'
expectations of home visits are quite different from the actual purpose of
home visiting programmes; that is, care and wellbeing versus cure and
prevention. This difference may partly explain why the effectiveness of
home visits remains controversial.
British Journal
of General
Practice
n= 11
informal
caregivers
10
AUTHOR
(Walsh, Jones, et
al. 2007)
DATE JOURNAL
2007 British Journal
of Psychiatry
METHOD
Randomised Trial
n
271
informal
carers
TITLE/AIM/KEY OUTCOMES
Reducing emotional distress in people caring for patients receiving
specialist palliative care
To evaluate the effectiveness of increased support for distressed,
informal carers of patients receiving palliative care. 271 informal carers
who scored over 5 on the 28-item General Health Questionnaire (GHQ).
The intervention comprised of 6 weekly visits by a trained advisor.
Primary outcome was carer distress (GHQ-28) at week 4, 9 and 12 week
follow up. Secondary outcomes were carer strain and quality of life,
satisfaction with care, and bereavement outcome.
Results – scores on the GHQ-28 fell below the threshold of 5/6 in a third
of participants in each trial arm at any follow-up point. Mean scores in
the intervention group were lower at all-time points but these differences
were not significant. No difference was observed in secondary outcomes.
Carers receiving the intervention reported qualitative benefit. The
intervention might have been too brief, and on-going help might have
been too brief, and on-going help might have had accruing benefits.
Alternatively, informal carers of patients with cancer may already receive
considerable input and the advisors help gave little additional advantage;
or caring for a dying relative is extremely stressful and no amount of
support is going to make it much better.
(Whitehead,
O’Brien, et al.
2012)
2012
Qualitative study:
Narrative
interviews with
people with
MND/ALS and
family carers.
n = 97 case
reviews
n = 24
people
with
MND/ALS
n=18 family
"Social services homecare for people with motor neurone
disease/amyotrophic lateral sclerosis: why are such services used or
refused?"
This study aimed to identify factors related to uptake of homecare in
MND/ALS. A case note review of patients at a UK MND/ALS clinic
provided data concerning disease onset and severity, demographic
variables and care received. Quantitative analyses highlighted the role of
Palliat Med
11
carers
increasing disease severity and age for social services homecare uptake.
Findings revealed a number of barriers delaying the uptake of such care.
'Internal' issues focused on retaining control and normality within the
home. 'External' issues arose from limited understanding of the disease
amongst service providers and lack of awareness of service entitlement
amongst patients and carers. Multiple factors are implicated in the
uptake of social services homecare. Uncertainties surrounding service
entitlement must be addressed, including the simplification of
bureaucratic procedures and clarification of the roles of health and social
care professionals.
12
A number of the publications discuss various aspects of the District Nurse and community nursing
role, alongside an increase of faster throughput of hospital patients with an emphasis on caring for
patients in their own homes (Jack, O’Brien, 2010, Whitehead, O’Brien, et al., 2012). The work
undertaken by District Nurses and their teams in relation to complex nursing therapies,
palliative/end of life care and the clinical support of highly dependent patients in home care settings
has also dramatically increased (Jack, O’Brien, 2010). Some studies do highlight roles such as
advocacy (Unwin, Le Mesurier, et al., 2008, Holdsworth and King, 2011) and fostering patient
participation and carer involvement (Van Kempen, Robben, et al., 2012). Several papers report the
perspectives of patients in receipt of care from District Nurses or community nurses and other
health and social care agencies, but these focus primarily on the meeting of needs and experiences
of care related matters rather than the carer role and the carer support requirement (Walsh, Jones,
et al., 2007, O’Brien, Whitehead et al., 2012). In summary, there appears to be a lack of publications
that robustly examine the differential roles of District Nurses and other community nursing services
to ensure carers’ needs in the community are being supported adequately by District Nurses and
community nursing teams.
Conclusion
In summary, existing publications portray the District Nursing and community nursing roles as
difficult to define, overlapping in part with other services. Whilst it is acknowledged that there are
more health/social care services in the community than can be discussed in a study of this length,
the current traditional approach to District Nursing and community nursing service provision
appears to focus insufficiently on how these professionals can appropriately assist informal carers.
Historically, carers’ needs were a high priority for the District Nurse (NMC 2001). However, District
Nursing as a profession is currently subject to a significant decline in the number of qualified District
Nurses and in investment in recruitment and training (QNI 2013).
Yet despite this enormous professional erosion, District Nursing services face a huge extension in
service delivery expectation which is inconsistent with the national breadth of demand. Whilst much
of the national design of community nursing service provision and community nursing roles appears
to be dependent on geography or local make up of District Nursing and/or community nursing teams,
with a reduced qualified District Nursing workforce, there is now a distinct gap in service and a lack
of leadership and knowledge about the needs of carers and how carers’ can be appropriately
supported to avoid carer breakdown.
The topic of carer identification, information and support within community nursing services
appears to be under-researched. It is, perhaps, time for a major review of the models to support
carers supporting nursing and personal care needs of patients’. This could involve a better
understanding of the tools and resources District Nursing teams and community nurses working in
Primary Care need to successfully engage with carers’ and support them in this unique and
challenging role.
13
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14
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