This paper reports findings from a study conducted in one community health care trust where 62 members of the district nursing team (grades B-H) were interviewed. An adaptation of the critical incident technique was used to determine factors which contributed or detracted from high quality care for a number of key areas including palliative care. The centrality of knowing the patient and his/her family emerged as an essential antecedent to the provision of high quality palliative care. Factors enabling the formation of positive relationships were given prominence in descriptions of ideal care. Strategies used to achieve this included establishing early contact with the patient and family, ensuring continuity of care, spending time with the patient and providing more than the physical aspects of care. The characteristics described by the community nurses are similar to those advocated in 'new nursing' which identifies the uniqueness of patient needs, and where the nurse-patient relationship is objectified as the vehicle through which therapeutic nursing can be delivered. The link with 'new nursing' emerges at an interesting time for community nurses. The past decade has seen many changes in the way that community nursing services are configured. The work of the district nursing service has been redefined, making the ideals of new nursing, for example holism, less achievable than they were a decade ago. This study reiterates the view that palliative care is one aspect of district nursing work that is universally valued as it lends itself to being an exemplar of excellence in terms of the potential for realizing the ideals of nursing practice. This is of increasing importance in the context of changes that militate against this ideal.

This review brings together for the first time the existing quantitative and qualitative research evidence about the experiences of parents caring for a child with a cleft. It summarizes salient themes on the emotional, social and service-related experiences of parents and critiques the literature to date, comparing it with wider, selected literature from the field of children's long-term conditions, including disability. The review suggests that there are similarities and differences between the literatures, in terms of research focus and approach. Similarities are found across children's conditions in the perspectives of parents on emotional, social and service-related aspects, although much of the cleft literature is focused on the early stages of children's lives. However, the quality of cleft research to date about parents' experiences has also been variable, with a narrow emphasis on cross-sectional, deficit-orientated psychological approaches focused mainly on mothers. Despite a substantial literature, little qualitative research has examined parents' perspectives in-depth, particularly about their child's treatment journey. This contrasts with the wider children's literature, which has traditionally drawn not only on psychological approaches but also on the broader perspectives of sociology, social policy, nursing and health services research, using both qualitative and quantitative methods, often in integrated ways. Such approaches have been able to highlight a greater range of experiences from both mothers and fathers, about caring for a child with a long-term condition and views about treatment. The review identifies a lack of comparable research in the cleft field to examine parents' experiences and needs at different stages of their children's lives. Above all, research is needed to investigate how both mothers and fathers might experience the long-term and complex treatment journey as children become older and to elicit their views about decision making for cleft treatments, particularly elective surgeries.

AimsTo understand the perceptions, needs and experiences of patients with Idiopathic Pulmonary Fibrosis.BackgroundIdiopathic pulmonary fibrosis is a progressive interstitial lung disease, with a mean life expectancy similar to some forms of cancer of 2–4 years from diagnosis. Unlike the cancer literature, which is rich with studies exploring the needs of their disease group, few publications exist on patient needs with this severe fibrotic lung disease.DesignA Qualitative study which took place between 2007–2012.MethodsSeventeen patients with a multidisciplinary team confirmed diagnosis of Idiopathic Pulmonary Fibrosis, with moderate to advanced disease severity and six of their informal carers were interviewed. An interview topic guide was developed by the researchers and service user group. The interviews were audio-recorded, semi-structured and took place at a regional respiratory and lung transplant centre in North West England. Interviews were transcribed verbatim and data analysed using Framework Analysis.FindingsThree main themes were identified: ‘Struggling to get a diagnosis’; ‘Loss of the life I previously had’; and ‘Living with Idiopathic Pulmonary Fibrosis’. Patients reported struggling to get a diagnosis and coping with a life-limiting, rapidly progressive illness with no good treatment and few support structures.ConclusionsThere is an urgent need for a better understanding of the difficulties faced by people with Idiopathic Pulmonary Fibrosis and their carers. This can be used to develop better supportive care in the United Kingdom and ultimately improve the quality of life of these patients.

Policies state that access to palliative care should be provided according to principles of equity. Such principles would include the absence of disparities in access to health care that are systematically associated with social advantage. A review of the literature a decade ago identified that patients with different characteristics used community palliative care services in variable ways that appeared inequitable. The objective of this literature review was to review recent literature to identify whether such variability remains. Searching included the use of electronic databases, scrutinizing bibliographies, and hand searching journals. Articles were included if they were published after 1997 (the date of the previous review) up to the beginning of 2008, and if they reported any data that investigated the characteristics of adult patients in relation to their relative utilization of community palliative care services, with reference to a comparator population. Forty-eight studies met the inclusion criteria. Patients still access community palliative care services in variable ways. Those who are older, male, from ethnic minority populations, not married, without a home carer, are socioeconomically disadvantaged, and who do not have cancer are all less likely to access community palliative care services. These studies do not identify the reasons for such variable access, or whether such variability is warranted with reference to clinical need or other factors. Studies tend to focus on access to specialist palliative care services without looking at the complexities of service use. Studies need to move beyond description of utilization patterns, and examine whether such patterns are inequitable, and what is happening in the referral or other processes that may result in such patterns.