Caring for a child with diabetes: the effect of specialist nurse care on parents'' needs and concerns

One hundred and sixty parents of 10- to 18-year-old children with diabetes were interviewed using Hymovich's Chronicity Impact and Coping Instrument (CICI: PQ). Eighty-two parents had access to a specialist nurse service; 72 parents did not. Regardless of the age of the child or the duration of diabetes, parents expressed a need for advice and support with child care. Parents with a specialist nurse needed information on more topics tending to focus on activities of daily living and child development rather than physical care and illness. They were also more likely to seek and receive help from nurses. Their level of concern was greater and, it is argued, may be the price parents pay for greater awareness. The findings of this study suggest that a systematic assessment of parent coping is necessary if specialist nurses are to help parents in their role as primary health carers.     

Clean intermittent self-catheterisation and children

The best chance for good renal health and continence for children with a neuropathic bladder is clean intermittent self-catheterisation. In order to maximize potential for good renal health and continence the child and family need to be well supported by the multidisciplinary team, making good use of the knowledge of the children's urology specialist nurse who is able to provide relevant information, advice and education. With support many children with a neuropathic bladder are able to achieve continence while maintaining good renal health.     

Lung cancer, caring for the caregivers. A qualitative study of providing pro-active social support targeted to the carers of patients with lung cancer

INTRODUCTION: Carers of patients with lung cancer often have a short time to access the support they require. The Macmillan Carers Project (MCP) was set up to provide non-clinical social support targeted in the community to the carers of patients with lung cancer and this study describes its evaluation. METHODS: Prospective case study using interviews with the carers, project workers and health and social care professionals to obtain qualitative data for thematic analysis. 81 patients' carers received support from the MCP; 20 carers, 2 MCP workers and their manager and 10 other professionals (chest consultant physician, lung cancer clinical nurse specialist, GP, four Macmillan nurses, hospice social worker and two community social workers) were interviewed. RESULTS: Patients were predominantly male (62%), mean age 71 years and carers were predominantly female (70%) mean age 63 years. Carers identified the MCP as providing emotional support, more time, practical help, financial advice, information and back-up for a myriad of problems. Although there was some overlap with other services, the MCP was valued by carers and professionals as filling a gap in social care. CONCLUSIONS: The unique aspect of this study was support targeted to the carers of a single cancer site (lung) rather than generic cancer support. As lung cancer may progress rapidly, patients and their carers have a short time to gather new information, access services and adjust to their new circumstances and roles. By focusing on the needs of carers from the time of lung cancer diagnosis, we have shown that the MCP was a valued additional service, well received by carers, patients and professionals.     

Community-based care in cystic fibrosis: role of the cystic fibrosis nurse specialist and implications for patients and families

Summary

Improved survival for cystic fibrosis has rapidly increased over the past four decades, with patients now living well into adult life. With changes in the structure of the National Health Service and the formation of provider units and general practitioner (GP) fund-holding practices, it is important to strengthen links between the hospital and community teams to ensure that the CF patient receives adequate care. Increasingly, treatment is being carried out at home, and this emphasis on home-based therapy demands that parents/carers and patients must acquire the skills and knowledge of complex therapies in order to optimize health. It is the role of the CF nurse specialist (NS) to educate those who will deliver the care, co-ordinate the provision of services at home, liaise with the CF team and community health-care professionals and to support the patient and their carers.     

Children of parents with a mental illness visiting psychiatric facilities: perceptions of staff

Children of parents with mental illness have been identified as a hidden population within mental health services, despite many clients being parents. In Australia, children of parents with a mental illness have been the focus of initiatives aimed at promoting their health and well-being and developing family-focused services. However, there has been little focus on children visiting acute inpatient mental health facilities. The aim of this study was to understand the experiences of children, their parents and carers, and staff when children visit, to better inform service planning. A qualitative exploratory research framework was used, and data were gathered through interviews. This paper presents the findings from the perspective of staff. Findings indicated that staff experienced being in a dilemma about children visiting and there were barriers to implementing family-friendly services. While staff mostly agreed in principle that children's visiting was beneficial, there was a lack of local policy and guidelines, and ad hoc arrangements existed. In addition, staff were unsure of their role with children, felt ill-equipped to talk to children about mental illness; and lacked knowledge of age-appropriate resources. Models of inpatient care need to be developed with a family focus that acknowledges the parental roles of clients and supports children visiting.     

Palliative care in the community for children with cancer in South East England.

In-depth interviews and discussions were held with 40 different professionals in South East England involved in managing palliative care for children with cancer in the community. Participants included paediatric oncologists and outreach nurse specialists in tertiary centres, paediatricians in shared care units, children's community nurses, general practitioners, social workers and child psychologists. The research examined palliative care services available in the region, exploring attitudes to both current provision and possible service improvements. Providing palliative care in the community involves multi-agency collaboration and the study highlighted a range of different approaches to case management with the diversity of resources available. Key improvements proposed by health-care professionals included: better communication and liaison between all the professionals involved; clearer allocation of roles and responsibilities; 24-hour availability of specialist advice on palliative care for children with cancer; faster access to social work and psychology services at the community level; continuity of nursing and respite care. The provision of specialist local palliative care services for children with cancer was generally rejected. The participants favoured improving community palliative care for all children with life-limiting or life-threatening conditions with community nursing teams providing continuity of care and outreach nurses providing specialist advice and support.     

Community specialist palliative care: experiences of patients and carers

Specialist palliative care provides a range of services for patients and their carers who have complex needs. There is a need to identify what patients and carers gain from contact with the specialist palliative care nurse (SPCN) and what aspects of that care have a positive impact on their quality of life (QoL). The aims of the study were to gain insightful and credible accounts of participants' experiences of the SPCN; to consider those dimensions of care which impact on satisfaction; to discover whether the SPCN provides improvements in QoL and to explore whether experiences match expectations. A qualitative approach focused on the experience and individual meaning; it is the individual narratives produced by each participant that are the rich and interesting outcomes of this study. Both patients and carers reported satisfaction at being given time and being listened to, with the interviewees using words and phrases such as 'confidence', 'trust', knowledge', 'listens to' and 'a sense of being there'. The study shows the patient and carers' lack of knowledge about specialist palliative care while confirming the positive influence of the SPCN.     

Implementing a nurse-led telephone advice system in ophthalmology

This article describes the background research I undertook to determine the potential for a telephone advice line in this major specialist eye hospital in the United Kingdom. The information gained was used to implement a computer-based telephone assessment system with guidelines. This system enables a registered nurse with an ophthalmic qualification to offer telephone triage and general information and advice about eye problems. The help line was identified as a service that would enhance the care of patients with eye problems, their carers, and health providers. The help line, "Moorfields Direct," was given a dedicated telephone number and was officially launched in February 1999.     

Looking after children and young people: ensuring their voices are heard in the pre-registration nursing curriculum

'Looked after Children' refers to those under the age of 18 years, who have been subject to a care order under The Children Act (1989). In England there are approximately 64,400 young people who are subject of a care order, with evidence suggesting that these young people are likely to experience greater health problems than their peers. While service user involvement is seen as integral to the nursing curriculum much of the literature to date has revolved around adult service users and carers. For a number of years professionals have been urged to hear the voices of young service users and carers, and in particular, those who regularly use health and social care services. This paper will highlight the importance of collaborating with looked after children and young people to inform the nursing curriculum. By focussing on the experiences of delivering a seminar in collaboration with this group of young people in a pre-registration BSc (Hons) in Children's Nursing, the paper will first describe how the session is organised followed by a discussion of the key issues arising these being explored from a nurse lecturer and student nurse perspective.     

Carer support from a community-based heart specialist nurse service

This article describes carers' experiences of the support to them by a specialist heart failure nurse (SHFN) service working in the community. In particular, it focuses on the elements of the service they felt to be beneficial to them in their roles as carers. Four carers were interviewed in their own homes. From the interviews, three key themes emerged: education, rapport/ongoing suport and financial concerns. Overall, there was a high level of satisfaction regarding the education, and particularly the medication advice, the the SHFN provided. The role of the SHFN as a nurse prescriber was highly valued. Carers also appreciated the rapport they had with the SHFN. The case management approach was seen to enhance the relationship with the carer as the SHFN coordinated care throughout the patient's disease trajectory. In addition, participants held a great respect for the SHFN's clinical expertise and were reassured that support was available should they need it. Financial concerns led to the most emotive dialogue. The evaluation has outlined the important role that an SHFN can offer in supporting carers. As case managers, SHFNs work opportunistically and proactively to recognize carer fatigue and implement appropriate strategies. As the health service in England moves into a challenging economic climate of commissioning services, it is important that the added value SHFNs offer in supporting carers is recognized.     

Palliative care in advanced kidney disease: a nurse-led joint renal and specialist palliative care clinic

The National Service Framework for Renal Services Part 2 identifies quality requirements for end-of-life care for individuals with kidney failure, recognizing the potential to forge closer relationships between renal and specialist palliative care providers. This article describes a pilot project set up by two Clinical Nurse Specialists, one working in hospice specialist palliative care and the other in renal palliative care within an acute trust. The purpose of the pilot was to work in collaboration to run a streamlined nurse-led clinic that would meet the palliative care needs of chronic kidney disease (CKD) Stage 5 patients and their carers. To achieve this the clinic would have to provide optimal symptom management, empower patients to make their own choices, and support them with advance care planning underpinned by the End of Life Care Strategy. The partnership also aimed to promote service improvement and practice development using transference of knowledge, skills, and expertise. Initial informal feedback, including a very small patient survey, suggests that the clinic was well received by patients, carers, and other health professionals. The clinic is ongoing and deserves more formal evaluation to encourage future service development.     

Minor illness in children: parents' views and use of health services

Consultation rates in young children are high, and parents and carers of young children have reported feeling disempowered and anxious when their children display common symptoms. Parents have stated that more information would help them manage these symptoms appropriately. This focus group study explored how parents and carers of young children feel when their child displays common symptoms, what information they need to assist them in appropriate management, and to determine if they would value an educational intervention on the management of common symptoms. Findings showed that many parents sought help from families and friends following negative experiences of seeking advice from health professionals and many were wary of the information presented in health information leaflets produced by pharmaceutical companies. Parents and carers who took part in this study stated that they would value an educational intervention that would help them to appropriately manage common symptoms. They wanted to receive the information through interactive group sessions, led by a health visitor, with the inclusion of simple and non-product biased "take home" materials.     

Clinical nurse specialists as entrepreneurs: constrained or liberated

Aims. This qualitative study explored the experiences of two groups of clinical nurse specialists – continence advisors and tissue viability nurses – working in primary care in the UK. In particular, the study focused on how clinical nurse specialists’ relationships with other health‐care professionals had an impact on their role. Background. Clinical nurse specialists are recognized worldwide as having expertise in a given field, which they use to develop the practice of others. Additionally, clinical nurse specialists share many of the characteristics of entrepreneurs, which they use to develop services related to their speciality. However, little research has been conducted in relation to clinical nurse specialists’ experiences as they attempt to diversify nursing practice. Design/methods. An ethnographic approach was adopted comprising many elements of Glaserian grounded theory. Data were collected via participant observation and face‐to‐face interviews with 22 clinical nurse specialists. Findings. Services provided by clinical nurse specialists were not static, clinical nurse specialists being the main drivers for service developments. However, clinical nurse specialists encountered difficulties when introducing new ideas. Given their role as advisors, clinical nurse specialists lacked authority to bring about change and were dependent on a number of mechanisms to bring about change, including ‘cultivating relationships’ with more powerful others, most notably the speciality consultant. Conclusions. The UK government has pledged to ‘liberate the talents of nurses’ so that their skills can be used to progress patient services. This study highlights the fact that a lack of collaborative working practices between health‐care professionals led to clinical nurse specialists being constrained. Relevance to clinical practice. Health‐care organizations need to provide an environment in which the entrepreneurial skills of clinical nurse specialists may be capitalized on. In the absence of an outlet for their ideas regarding service developments, clinical nurse specialists may remain dependent on the mechanisms witnessed in this study for some time.     

Improving access to continence services: action in Walsall

New government guidelines state that primary care trusts should be moving towards an integrated continence service. In Walsall a study was undertaken to inform the development of care pathways and to support a move to a single specialist continence service. The study looked at accessibility to services, and the opinions of patients (suffering from urinary incontinence), and professionals about the two existing specialist continence services. Over a period of approximately 3 months primary care staff, particularly GPs and practice nurses, and patients filled in questionnaires. Overall the primary care team and patients were satisfied with the help they had received from the current services. The study identified a need to raise awareness and provide more information about incontinence and the services available. There is also an opportunity to get practice nurses more involved in the management of incontinence. The recommendations of this study have been incorporated into the changes being made to the local service.     

Setting up a support group for carers of stroke survivors

A stroke specialist nurse enlisted the help of women carers to develop a self-supporting carers' group in Northern Ireland. Members are offered information, advice and a forum for service improvement suggestions. Two founding members discuss their experiences of attending meetings.     

Supportive and palliative care needs of families of children with life-threatening illnesses in Western Australia: evidence to guide the development of a palliative care service

OBJECTIVE: To obtain feedback from families of children receiving palliative and supportive care about their care needs in hospital and in community settings. DESIGN: A two-phase combined quantitative and qualitative study. SETTING: Western Australia. PARTICIPANTS: 134 parents and 20 service providers. RESULTS: Analysis indicated the concept of palliative care is poorly understood by health professionals and by parents. Many families are affected emotionally, financially and physically by the burden of caring for children with life threatening or chronic conditions requiring complex care at home. Parents indicated the need for clear and honest information about their child's condition and prognosis throughout the trajectory of illness and perceived this had been lacking. Families required financial and practical assistance with providing care from their children at home. Parents also wanted more practical resources and information to assist with the management of their child's nutrition and pain, as well as support for their other children. The level of respite (in home and residential) was perceived to be insufficient and inequitable. Parents also required access to, and advice from, multidisciplinary health professionals when caring for their child at home. There was a perceived lack of coordination between community services and the hospital. CONCLUSION: Education of health professionals and parents regarding the concepts and introduction of palliative and supportive care is required. Care for children and their families should be coordinated by a multidisciplinary team in consultation with children and their families, and linked and integrated with the treating hospital in collaboration with community services. More inclusive criteria are required for community services including practical aids and respite care.     

Factors influencing the use and provision of respite care services for older families of people with a severe mental illness

Family carers of people with a severe mental illness play a vital, yet often unrecognized and undervalued role in Australian society. Respite care services can assist these family carers in their role; however, little is known about their access to these services. The paper addresses this knowledge gap. An exploratory field study was conducted throughout the eastern suburbs of Sydney, Australia, to identify and examine the factors influencing the use and provision of respite services for older carers of people with a mental illness. Semistructured, in-depth interviews, and structured self-completed questionnaires were conducted with older family carers, mental health care professionals, and respite care service providers. Additionally, relevant documents (local policies, strategic plans and reports on respite care) were reviewed. It was found that current respite services are problematic for older family carers of Australians with a mental illness, signalling the need for concerted efforts by carers, health professionals, and service providers to improve access. Changes to respite provision and utilization are recommended.     

Constipation services for children: the role of health visitor teams

Constipation among children is a prevalent condition, yet poorly understood. There is little empirical evidence for 'best possible' configurations of services. This article presents a survey of Walsall health visitor team members (HVTMs) which aimed to identify the types of advice and care provided to young children with constipation, pathways to care and ideas for service improvement. Most HVTM consultations were parent-initiated. Few GPs referred children to HVTMs. HVTMs most commonly provided advice about fluids and diet -- only one prescribed medication. HVTMs identified the need for early intervention, consistent information for parents and a clear pathway for all health professionals to follow. Currently, a team from the local primary and hospital NHS trusts is developing an integrated care pathway for paediatric constipation. Success of such pathways depends on their adoption by GPs and hospital-based health professionals, and on evidence of efficacy arising from their evaluation.     

Pathways to care in first episode psychosis

In order to inform the development of appropriate local services for early intervention in psychosis, a survey was conducted of the experiences of service users and their carers at the time when signs of psychosis were first noted. Eighteen service users and 12 carers were surveyed by questionnaire and interview. Both service users and carers recognized early signs of psychosis, but were often frustrated in their attempts to find help, particularly by lack of knowledge of whom to approach and unhelpful responses from professionals. The consistent themes that emerged included the young age of onset (mean age 17.2 years), poor recognition and lack of appropriate treatment at an early stage in primary care, delay in treatment because of associated substance misuse, and the inappropriateness of admission to a general adult psychiatric ward. This survey has given a local context to findings from national and international research studies. This will enable us to set up a local service which is responsive to the views and needs of service users and carers in Rotherham.