Barbara Jack

Hospital based palliative care teams improve the symptoms of cancer patients

Despite the increase in hospital palliative care teams, there is little research into their impact on symptom control in patients. A nonequivalent control group design, using a quota sample, investigated 100 cancer patients who had been admitted to hospital for symptom control. Fifty patients received hospital palliative care team intervention compared with 50 patients receiving traditional care. Data was collected using the Palliative Care Assessment (PACA) symptom assessment tool on three occasions. Both groups showed a statistically significant improvement in their symptoms. This significance failed to meet the criterion of one point on a four point scale and therefore results have to be interpreted with caution. However the intervention group had a greater improvement in all their symptoms, particularly for the pain and anorexia for which there were no differences between the groups on the initial assessment, there was a statistically greater improvement for the intervention group (P < 0.001). Consecutive patients with cancer admitted to hospital for symptom control during this study improved, but those patients who received specialist palliative care had a significantly greater improvement in their symptoms.

Systematic review of the management of incontinence and promotion of continence in older people in care homes: descriptive studies with urinary incontinence as primary focus

Aim This is a review of descriptive studies with incontinence as the primary focus in older people in care homes. Background Incontinence is prevalent among residents of care home populations. Data sources MEDLINE and CINAHL were searched from 1996 to 2007 using the highly sensitive search strings of the Cochrane Incontinence Review Group for urinary and faecal incontinence including all research designs. Search strings were modified to enhance selectiveness for care homes and older people and exclude studies involving surgical or pharmacological interventions. Searching of reference sections from identified studies was also used to supplement electronic searches. The Cochrane Library was searched for relevant systematic reviews to locate relevant studies from those included or excluded from reviews. The search was limited to English-language publications. Methods A systematic review of studies on the management of incontinence, promotion of continence or maintenance of continence in care homes was conducted in 2007–2009. This is a report of descriptive studies. Results Ten studies were identified that reported on prevalence and incidence of incontinence (urinary with or without faecal), policies, assessment, documentation, management or economic evaluation of its management. Use of incontinence pads and toileting programmes comprised the most common management approaches used. No studies were identified that attempted to maintain continence of residents in care homes. Conclusions Studies on maintaining continence and identifying components of toileting programmes that are successful in managing or preventing incontinence and promoting continence in residents of care home populations along with their economic evaluation are warranted.

Barriers to dying at home: the impact of poor co-ordination of community service provision for patients with cancer

For patients dying of cancer, there is an emphasis on giving choice regarding preferred location for care, with the option of dying at home, which is integral to UK government health initiatives such as the End of Life Care Programme. However, patients continue to be admitted to hospital in the terminal phase of their illness when they have expressed a desire to die at home. A qualitative study, using two audio tape-recorded focus group interviews, with a purposive sample of district nurses and community specialist palliative care nurses (19) was undertaken across two primary care trusts in the north west of England. Data were analysed using a thematic analysis approach. From a service provision perspective, the results reveal that poor discharge planning and co-ordination, difficulty in establishing additional equipment and services together with inadequate out of hours medical provision were all factors contributing to hospital admissions for patients with cancer in the last hours and days of life, and thus were barriers to dying at home.

From symptom onset to a diagnosis of amyotrophic lateral sclerosis/motor neuron disease (ALS/MND): experiences of people with ALS/MND and family carers - a qualitative study.

Abstract Our objectives were to explore the personal perspectives of the diagnostic experience for people with ALS/MND and their family carers identifying issues that could impact positively or negatively on these experiences. We conducted a qualitative study with face-to-face interviews to capture experiences from 24 people with ALS/MND and 18 current family carers. Ten former family carers were also interviewed. The diagnostic experience was fraught with difficulties. There was failure to recognize the significance of some symptoms by patients, carers and primary and secondary care health professionals, which ultimately delayed diagnosis. Delivery of the diagnosis was frequently unsatisfactory despite international guidelines on the subject. Immediate post-diagnosis support often compared negatively to that provided for people with cancer. In conclusion, this study has identified a need for a more streamlined and empathetic diagnostic pathway for people with ALS/MND. Improvements to medical curricula are required to increase awareness of the condition and reduce the likelihood of diagnostic delays resulting from a failure to recognize the need for a neurological referral. Greater public awareness of the illness is also needed. Furthermore, delivery of the diagnosis should more closely adhere to established guidelines.

Resilience to care: A systematic review and meta-synthesis of the qualitative literature concerning the experiences of student nurses in adult hospital settings in the UK

AIM The aim of the study was to gain new insights into the experiences and accounts of adult pre-registration student nurse clinical allocations in hospital settings in the UK. DESIGN A systematic review and meta-synthesis of the qualitative literature was undertaken. DATA SOURCES Pertinent papers published from 1990 to 2010 were identified through searches of Cumulative Index for Nursing and Allied Health Literature, Proquest, Medline (PubMed), and the British Nursing Index. Hand and citation searching was also undertaken. REVIEW METHODS Ten relevant papers were identified for review. Quality checks on the robustness of the studies were undertaken. Data extraction included identifying details of the studys settings, sample details, focus of the study, research design, data collection methods, data analysis approaches and qualitative data themes. RESULTS Approximately 40 qualitative data themes were identified and were the subject of a meta-synthesis. Five cross-cutting synthesised data themes were identified including: pre-placement anticipation, the realities of the clinical environment, clinical learning and becoming a nurse. Stress and coping was a concurrent topic area and related to all the synthesised themes. CONCLUSIONS The findings give new insights into the clinical experiences of student nurses of which the stress of learning in clinical environments and the development of emotional resilience is a focal issue. Whilst the majority of students in the UK experience nurturing, caring clinical environments and positive staff relationships, however, some do not. Reports of negative student nurse clinical experiences are shown in this review to have endured through time. Nurse educators should be alert to the possibility that some students may have very negative clinical experiences. The consequences such negative experiences will affect such things as increases to student attrition and the help perpetuate the cycle of negative clinical learning experiences occurring in the future.

Systematic review of the management of incontinence and promotion of continence in older people in care homes: Descriptive studies with urinary incontinence as primary focus

Aim This is a review of descriptive studies with incontinence as the primary focus in older people in care homes. Background Incontinence is prevalent among residents of care home populations. Data sources MEDLINE and CINAHL were searched from 1996 to 2007 using the highly sensitive search strings of the Cochrane Incontinence Review Group for urinary and faecal incontinence including all research designs. Search strings were modified to enhance selectiveness for care homes and older people and exclude studies involving surgical or pharmacological interventions. Searching of reference sections from identified studies was also used to supplement electronic searches. The Cochrane Library was searched for relevant systematic reviews to locate relevant studies from those included or excluded from reviews. The search was limited to English-language publications. Methods A systematic review of studies on the management of incontinence, promotion of continence or maintenance of continence in care homes was conducted in 2007–2009. This is a report of descriptive studies. Results Ten studies were identified that reported on prevalence and incidence of incontinence (urinary with or without faecal), policies, assessment, documentation, management or economic evaluation of its management. Use of incontinence pads and toileting programmes comprised the most common management approaches used. No studies were identified that attempted to maintain continence of residents in care homes. Conclusions Studies on maintaining continence and identifying components of toileting programmes that are successful in managing or preventing incontinence and promoting continence in residents of care home populations along with their economic evaluation are warranted.

The need for support services for family carers of people with motor neurone disease (MND): views of current and former family caregivers a qualitative study

Purpose: Family carers provide the majority of home-based care for people with motor neurone disease (MND). Carers’ need for, and use of, support services are not fully understood; this study aimed to explore, from a qualitative perspective, the views of current and former family carers of people with MND. Methods: A qualitative study was undertaken in Northwest England, using narrative interviews with current (18) and former (10) carers of a family member with MND. An optional longitudinal element involving diary completion was offered to the current carers. Data were analyzed using a thematic framework approach. Results: Carer’s needs vary, but encompass the provision of information and training, availability of respite care, counselling, and access to trained paid-for carers. Conclusions: There is need for a range of support services to be made available from which carers can select those most appropriate for them. Some support services are not always available for carers of this client group. There is a need for carers to access greater manual handling and training for physical care. Without sufficient support, carer burden can be overwhelming which may impact on the place of care of the patient and ultimately has implications for health and social care services. Implications for Rehabilitation People with motor neurone disease have complex care needs with family carers providing the majority of home-based care. This study has shown there is a need for increased training in manual handling and physical care for family carers. Failure to properly support family carers increases the burden on them and if left unchecked may ultimately affect where the patient is cared for. A range of support services are needed for family carers with clear signposting for them to select those most appropriate for their individual needs.

‘A bridge to the hospice’: The impact of a Community Volunteer Programme in Uganda

In Africa, the need for palliative care provision is escalating with an increasing number of people living with HIV/AIDS, coupled with rising cancer and AIDS-related cancer diagnoses. In Uganda there is a shortage of doctors, particularly in rural areas. To address this Hospice Africa Uganda developed a Community Volunteer Programme to train volunteers to help by providing support to patients in their own homes. The aim of this qualitative study was to evaluate the impact of the Community Volunteer Programme. Sixty-four interviews, with patients (21), community volunteer workers (CVWs) (32), and the hospice clinical teams (11) were conducted, using semi-structured digitally recorded individual, group and focus group interviews, at the Hospice Africa Uganda sites. The results reported the value of the Community Volunteer Programme, including the impact on patients and families, and how the CVWs acted as a ‘bridge to the hospice’ in identifying patients. Developing financial challenges that are emerging which could potentially impact on the programme were reported. The Community Volunteer Programme appears to be having a positive impact on patients, families and the hospice team, and is a model worthy of consideration by other developing countries to allow the expansion of palliative care.

Experiences of dying, death and bereavement in motor neurone disease: A qualitative study

Objectives: to explore the experiences of people with Motor Neurone Disease (MND), current and bereaved carers in the final stages of the disease and bereavement period. Methods: a qualitative study using narrative interviews was used to elicit accounts from 24 people with MND and 18 current family carers and 10 former family carers. Results: the needs of patients and carers are not being adequately met in the final stages of MND and there appears a need for increased, co-ordinated support from palliative care services. The use of advance care planning tools is regarded as beneficial for patients and carers, but health professionals demonstrate a limited understanding of them. Anxiety and distress in patients, carers and bereaved carers is heightened during this period. Carer burden is excessive and may exacerbate patient distress and desire for hastening death. Conclusion: this study has identified a number of issues people with MND and their carers face in the final stages of the illness, indicating some ways in which health, social and palliative care services could be improved or co-operate more effectively in order to better meet their needs.

Social services homecare for people with motor neurone disease/amyotrophic lateral sclerosis: why are such services used or refused?

Many patients with the terminal condition motor neurone disease/amyotrophic lateral sclerosis (MND/ALS) do not access social service homecare, which may have implications for the location of end-of-life care. We aimed to identify factors related to uptake of such care in MND/ALS. A case note review of patients at a UK MND/ALS clinic (N = 97) provided data concerning disease onset and severity, demographic variables and care received. Narrative interviews with people with MND/ALS (N = 24) and family carers (N = 18) explored their perspectives on social services homecare. Quantitative analyses highlighted the role of increasing disease severity and age for social services homecare uptake. However, qualitative 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. Service providers need a greater awareness of the nature of the disease and their role in its management.