User perspective on palliative care services: experiences of middle-aged partners bereaved through cancer known to social work services in Northern Ireland

This qualitative research study explores experiences of partners bereaved through cancer, who were resident in an urban area of Northern Ireland and who had been service users of the social work services. Data were collected in 2004 from 10 individuals who participated in semi-structured interviews. Emergent themes were identified using thematic content analysis and findings analysed under four categories: cancer journey; impact of bereavement; process of adjustment and change; and experience of support services. Opportunities to facilitate communication were not always maximised, often resulting in poor bereavement outcomes. Although hospices undertook bereavement risk assessment, participants were unaware of its use and queried its accuracy without service user involvement. The most cited informal support was family and friends, although such help was time-limited. Service user feedback regarding social workers was generally positive; however, there was a lack of knowledge about their role in palliative care. Post-bereavement adjustment was influenced by the quality of social networks, the responsibilities of lone parenthood, and challenges to life values and core beliefs. A framework for palliative care social work has been recommended based on research findings.

Bereavement needs assessment in specialist palliative care: A review of the literature

Bereavement needs assessment for specialist palliative care services has been highlighted as important by NICE guidance on palliative care for adults with cancer. Identifying and implementing appropriate bereavement measurement tools has remained a challenge. This paper identifies and reviews bereavement measurement tools to determine their suitability for use within bereavement services and hospice settings. Cochrane, MEDLINE, PsycINFO and CINAHL, electronic databases were searched, yielding 486 papers. From fifty-nine full text papers appraised, 10 measurement tools were analysed in detail. Some tools had been tested on specific populations which limited transferability to specialist palliative care settings; some lacked adequate theoretical links and were not effective in discriminating between normal and complicated grief reactions; and some lacked clear evidence of validity or reliability. Based on these criteria, conclusions are drawn about the suitability of particular tools for UK bereavement services and hospice settings where intervention is delivered by both trained professionals and volunteers.

An evaluation of a domiciliary blood transfusion serivce for palliative care patients in Northern Ireland

Marie Curie Cancer Care (MCCC) is a national charitable organisation which provides specialist palliative care services to patients with cancer and other life limiting illnesses. Marie Curie Nursing Service (MCNS) provides nursing services to patients in their own homes. The administration of blood transfusions to palliative care patients is required to improve symptom management and quality of life; however this procedure often results in unnecessary hospital admissions. Recognising that the majority of patients wish to be cared for and die in their own home, and with National Guidance recommending that specialist palliative care services should be provided to patients in their preferred place of care, a recent service initiative by MCNS was domiciliary blood transfusions. Whilst this is not a new service within domiciliary care, this pilot project aimed to capture patient views to evaluate this service initiative. Telephone interviews were conducted, using a questionnaire, with 11 patients who had received the service. Findings indicated positive evaluation of the service. Domiciliary blood transfusions helped to avoid unnecessary hospital admissions, the quality of life of patients and their families was improved in the palliative phase of illness and they received the service in their preferred place of care.

A systematic review of instruments related to family caregivers of palliative care patients

Support for family caregivers is a core function of palliative care. However, there is a lack of consistency in the way needs are assessed, few longitudinal studies to examine the impact of caregiving, and a dearth of evidence-based interventions. In order to help redress this situation, identification of suitable instruments to examine the caregiving experience and the effectiveness of interventions is required. A systematic literature review was undertaken incorporating representatives of the European Association for Palliative Care’s International Palliative Care Family Caregiver Research Collaboration and Family Carer Taskforce. The aim of the review was to identify articles that described the use of instruments administered to family caregivers of palliative care patients (pre and post-bereavement). Fourteen of the 62 instruments targeted satisfaction with service delivery and less than half were developed specifically for the palliative care context. In approximately 25% of articles psychometric data were not reported. Where psychometric results were reported, validity data were reported in less than half (42%) of these cases. While a considerable variety of instruments have been administered to family caregivers, the validity of some of these requires further consideration. We recommend that others be judicious before developing new instruments for this population.

Teaching family carers about home based palliative care: Final results from a group education program

Without the considerable support provided by family carers, many patients receiving palliative care would be unable to remain at home. However, family carers typically lack the required information and skills to prepare them for such a role. Pilot work has demonstrated that group education programs for family carers can be readily developed; they are feasible, accessible, and useful. This project sought to build on our pilot research to further examine the effectiveness of a group education program by evaluating the outcomes with a larger number of participants. The program aimed to prepare primary family carers for the role of supporting a relative with advanced, noncurative cancer at home. The psycho-educational program consisted of three consecutive weekly sessions presented in a group format, conducted at six home-based palliative care services across metropolitan and regional Victoria, Australia. The following dependent variables were measured at three time points: carer competence, preparedness, rewards, and information needs. The three time points were: commencement of the program (Time 1), upon completion (Time 2), and two weeks later (Time 3). A total of 156 participants (including the pilot phase) completed Time 1 questionnaires and 96 completed all three time periods (62%). Between Time 1 and Time 2, the intervention had a statistically significant positive effect on preparedness, competence, rewards, and having informational needs met. Outcomes were maintained at Time 3. There was no difference in the effectiveness of the intervention for participants in regional areas compared to participants in metropolitan areas.

This study demonstrated that a group education program to prepare family carers for the role of supporting a dying relative at home was effective. Implications for further research and practice are outlined.

Psychological and social profile of family caregivers upon commencement of palliative care provision

Context
Palliative care services are required to support patients who have advanced, life-threatening, noncurable disease, and their family caregivers. Comprehensive psychological and social support for bereaved family members also is expected. However, recent systematic reviews have demonstrated significant gaps in evidence-based approaches for such support. Furthermore, a comprehensive understanding of the psychological and social response to the family caregiver role is required for support to be optimized.

Objectives
We sought to examine the psychological and social profile of family caregivers on commencement of receiving palliative care services.

Methods
A self-report questionnaire was administered to primary family caregivers of patients within two weeks of admission to three palliative care services in Melbourne, Australia. The questionnaire incorporated six instruments that measured 11 family caregiver-related psychosocial factors; four instruments that measured caregiver psychological distress factors; 14 mental health lifetime risk factors; and a sociodemographic questionnaire.

Results
Three hundred and two family caregivers participated. Nearly half (44%) of the caregivers had a probable anxiety and/or depressive disorder, with 40% scoring more than the cutoff score for probable anxiety and 20% scoring more than the cutoff score for probable depression. Additionally, approximately 15% of caregivers met the criteria for pre-loss grief, and around 10% reported moderate to severe levels of demoralization. Caregivers who had a probable anxiety and/or depressive disorder also reported higher levels of pre-loss grief.

Conclusion
This study provides further evidence of the prevalence of poor psychosocial well-being in this population. The results reinforce the need to develop suitable strategies for psychological and social support for family caregivers.