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.

Working across boundaries to improve health outcomes: a case study of a housing support and outreach service for homeless people living with HIV

This paper reports the findings of an evaluation of the ‘Housing Support, Outreach and Referral’ service developed to support people living with HIV who were homeless or at risk of homelessness. The service was set up as part of the Supporting People Health Pilot programme established to demonstrate the policy links between housing support services and health and social care services by encouraging the development of integrated services. The paper considers the role of housing support in improving people's health, and considers the challenges of working across housing, health and social care boundaries. The evaluation of the health pilot employed two main sources of data collection: quarterly project evaluation reports, which collected process data as well as reporting progress against aims and objectives, and semi-structured interviews with professionals from all key stakeholder groups and agencies, and with people who used services. Over the course of 15 months, 56 referrals were received of which 27 were accepted. Fifteen people received tenancy support of whom 12 were helped to access temporary accommodation. At the end of the 15 months, all of the tenancies had been maintained. In addition, 18 people registered with a general practitioner and 13 registered with an HIV clinic. Interviews with professionals emphasised the importance of the local joint working context, the involvement of the voluntary sector and the role of the support workers as factors that accounted for these outcomes. Those using services placed most emphasis on the flexibility of the support worker role. Importantly, interviews with professionals and those using services suggest that the role of support worker incorporates two dimensions – those of networker/navigator as well as advocate – and that both dimensions are important in determining the effectiveness of the service.

Sharing services, saving money? Five risks to cost saving when organizations share administrative services

Shared services are a popular reform for governments under financial pressure. The hope is to reduce overheads and increase efficiency by providing support services like HR, finance and procurement once to multiple agencies. Drawing on insights from organization theory and political science, we identify five risks that shared services won’t live up to current expectations. We illustrate each with empirical evidence from the UK, Ireland and further afield, and conclude with suggestions on how to manage these risks.

Bereavement Assessment Practice in Hospice Settings: Challenges for Palliative Care Social Workers

The management and delivery of bereavement support services in palliative care settings presents practical and ethical challenges. A national survey, conducted in 2007, examined bereavement practice in ten Marie Curie hospices across the United Kingdom. This qualitative study was undertaken using semi-structured telephone interviews with Bereavement Service Leaders located in each hospice. Although findings revealed that bereavement services were in operation and had been reviewed in response to the National Institute for Clinical Excellence Guidance (2004), and all bereaved families were offered support, there was no standardisation of service delivery across sites. Multi-disciplinary team meetings facilitated shared decision-making for bereavement follow-up, and expanded and clarified documentation completed by nursing staff around the time of the patient’s death. However, there was ambiguity regarding professional ‘duty of care’ and agency responses to bereaved individuals who were suicidal. Questions were raised around clinical effectiveness, reliability and professional accountability. The study highlighted ethical issues centred on documentation, user participation and consent, and found staff training was variable across the 10 hospices. The findings have informed the development of a post-bereavement service model which has been subsequently implemented across Marie Curie Cancer Care.

The extent and nature of family alcohol and drug use: Findings from the Belfast Youth Development Study

Using data from an ongoing longitudinal study of adolescent drug use, this study examines the proportion of teenagers living with parents who are problem alcohol or drug users. Around two percent of parents report high levels of problem drinking and one per cent report problem drug use. If a broader definition of hazardous drinking is used, the proportion of teenagers exposed increases to over 15 per cent. When substance use is examined at a family level (taking account of alcohol and drug use amongst dependent children in addition to that of parents), the proportion of families experiencing some form of substance use is considerable. These findings add further support to the call for increased recognition of the needs of dependent children within adult treatment services when working with parents. Likewise, the reduction of harm to children as a result of parent substance use should be an increasingly important priority for family support services. This is likely to be achieved through the closer integration of addiction and family services.

The challenges of joint working: lessons from the Supporting People Health Pilot evaluation

Purpose: This paper reports the findings of the evaluation of the Supporting People Health Pilots programme, which was established to demonstrate the policy links between housing support services and health and social care services by encouraging the development of integrated services. The paper highlights the challenges Method: The evaluation of the six health pilots rested on two main sources of data collection: Quarterly Project Evaluation Reports collected process data as well as reporting progress against aims and objectives. Semi-structured interviews—conducted across all key professional stakeholder groups and agencies and with people who used services—explored their experiences of these new services. Results: The ability of pilots to work across organisational boundaries to achieve their aims and objectives was associated not only with agencies sharing an understanding of the purpose of the joint venture, a history of joint working and clear and efficient governance arrangements but on two other characteristics: the extent and nature of statutory sector participation and, whether or not the service is defined by a history of voluntary sector involvement. In particular the pilots demonstrated how voluntary sector agencies appeared to be less constrained by organisational priorities and professional agenda and more able to respond flexibly to meet the complex needs of individuals. Conclusion and discussion: The pilots demonstrate that integrating services to support people with complex needs works best

Exploring and comparing the experience and coping behaviour of men and women with colorectal cancer after chemotherapy treatment:A qualitative longitudinal study

Objectives: Men have higher incidence and mortality rates for nearly all cancers. They are less likely than women to utilise cancer information services and other social support services. The aim of this study was to explore and compare the experience and coping behaviour of men and women after treatment for colorectal cancer (CRC). Methods: A longitudinal qualitative study was conducted involving 38 individuals (24 men and 14 women) with CRC. Data were generated using semi-structured interviews at four time points over an 18-month period, post-diagnosis. Interviews focused on participant's experience of CRC and on how gender affected their coping. This paper reports the findings of interviews 3 and 4 which examined the participant's experience after chemotherapy. Results: Three themes emerged from the interviews ('new normal', living with uncertainty and support needs). Many men and women reacted similarly; however, there was some variation evident between and within sexes. The main difference was with regard to the long-term physical side effects of the illness. Many women admitted to still experiencing side effects, whereas many men indicated that they had no problems. These men engaged in practices that aligned with their gender identity and view of masculinity. It must be noted that some men and women were still experiencing an impact. Conclusions: Recovery from the physical and psychological effects of CRC does not occur simultaneously. Healthcare professionals should be aware that not all men (or women) conform to the social stereotypes of masculinity (or femininity). Copyright © 2010 John Wiley & Sons, Ltd.

Effect of preventive primary care outreach on health related quality of life among older adults at risk of functional decline: Randomised controlled trial

Objective: To evaluate the impact of a provider initiated primary care outreach intervention compared with usual care among older adults at risk of functional decline. Design: Randomised controlled trial. Setting: Patients enrolled with 35 family physicians in five primary care networks in Hamilton, Ontario, Canada. Participants Patients: were eligible if they were 75 years of age or older and were not receiving home care services. Of 3166 potentially eligible patients, 2662 (84%) completed the validated postal questionnaire used to determine risk of functional decline. Of 1724 patients who met the risk criteria, 769 (45%) agreed to participate and 719 were randomised. Intervention: The 12 month intervention, provided by experienced home care nurses in 2004-6, consisted of a comprehensive initial assessment using the resident assessment instrument for home care; collaborative care planning with patients, their families, and family physicians; health promotion; and referral to community health and social support services. Main outcome measures: Quality adjusted life years (QALYs), use and costs of health and social services, functional status, self rated health, and mortality. Results: The mean difference in QALYs between intervention and control patients during the study period was not statistically significant (0.017, 95% confidence interval -0.022 to 0.056; P=0.388). The mean difference in overall cost of prescription drugs and services between the intervention and control groups was not statistically significant, (-$C165 (£107; €118; $162), 95% confidence interval -$C16 545 to $C16 214; P=0.984). Changes over 12 months in functional status and self rated health were not significantly different between the intervention and control groups. Ten patients died in each group. Conclusions: The results of this study do not support adoption of this preventive primary care intervention for this target population of high risk older adults. Trial registration: Clinical trials NCT00134836.

Preferences for place of care and place of death among informal caregivers of the terminally ill

Objectives: (1) To determine informal caregivers perceptions about place of care and place of death; and (2) to identify variables associated with a home death among terminally ill individuals who received in-home support services in a publicly funded home care system. Participants and design: A total of 216 informal caregivers participated in a bereavement interview. Data collection included care recipient and informal caregiver characteristics, the use of and satisfaction with community services, and preferences about place of death. Results: Most caregivers reported that they and the care recipient had a preferred place of death (77 and 68%, respectively) with over 63% reporting home as the preferred place of death. Caregivers had a greater preference for an institutional death (14%) than care recipients (4.7%). While 30% of care recipients did not die in their preferred location, most caregivers (92%) felt, in retrospect, that where the care recipient died was the appropriate place of death. Most caregivers reported being satisfied with the care that was provided. The odds of dying at home were greater when the care recipient stated a preference for place of death (OR: 2.92; 95% CI: 1.25, 6.85), and the family physician made home visits during the care recipients last month of life (Univariate odds ratios (OR): 4.42; 95% CI: 1.46, 13.36). Discussion: The ethic of self-control and choice for the care recipient must be balanced with consideration for the well being of the informal caregiver and responsiveness of the community service system. © 2005 Edward Arnold (Publishers) Ltd.

Health care needs of community-dwelling older adults

Objective. To identify, assess, and rank the importance of health care needs of community-dwelling older adults. Method. A structured telephone interview with 107 respondents (physicians, direct service providers and administrators) about the importance of a list of 31 health care needs of older adults. Respondents also identified the single most important health issue facing local older adults now and in the next 5 to 10 years. Results. The five most important health care needs, in descending order, are: care-giver support services, community long-term care services services for people with demential/Alzheimer's disease, palliative/end-of-life care, and services for cancer patients and their families. Community long-term care services were identified as the single most important health issue both now and in the next 5 to 10 years. Conclusion. The study findings should be of value to health and social service researchers, planners, providers and administrators regarding the needs of community-dwelling older adults.

Experiences and needs of bereaved carers during palliative and end-of-life care for people with chronic obstructive pulmonary disease

This study explored the experiences of palliative care that bereaved carers had while providing care to a dying loved one with chronic obstructive pulmonary disease (COPD).

Method: Semi-structured interviews were undertaken with nine carers whohad lost a loved one in the preceding 6 to 24 months.These interviews explored levels of satisfaction with disease management, symptom management, and end-of-life care. With permission, interviews were tape recorded, transcribed, and subjected to content analysis.

Findings: Three themes emerged from the data: the impact of the caring experience, the lack of support services, and end-of-life and bereavement support. Carers experienced carer burden, lack of access to support services, a need for palliative care, and bereavement support.

Conclusion: The findings provide a first insight into the experiences of carers of patients with advanced COPD. Bereaved carers of patients who had suffered advanced COPD reported that they had received inadequate support and had a range of unmet palliative care needs. Special attention should be paid to educating and supporting carers during their caring and bereavement periods to ensure that their quality of life is maintained or enhanced

A comparative analysis of the health and wellbeing of cancer survivors to the general population

Background
The population of people surviving cancer is continually increasing and currently cancer survivors represent approximately 3.7% of the American population and 3% of the UK population. There is limited and inconclusive empirical evidence regarding the long-term health and well-being of cancer survivors.

Methods
Two hundred eighty-nine cancer survivors and 262 matched-age and sex patients from the same group of General (primary care) Practices completed postal questionnaires measuring health and well-being, health service utilisation and satisfaction and health care needs.

Main Results
Cancer survivors reported poorer health and well-being and health service utilisation than the general population. Despite this poorer health, the majority of cancer survivors reported satisfaction with services and almost two-thirds of the survivors did not report any needs.

Conclusions
The majority of cancer survivors do not appear to require additional support services. There is, however, a subgroup of survivors who warrant specialist support, particularly survivors who are older, experience late effects and have had adjuvant treatments. Future research should focus on developing methods that could be used in routine clinical practice to identify ‘at risk’ or vulnerable patients and to provide appropriate and timely support.

Stigmatised Identity and Service Usage in Disadvantaged Communities: Residents’, community workers’ and service providers’ perspectives.

The impact of community stigmatisation upon service usage has been largely overlooked from a social identity perspective. Specifically, the social identity-mediated mechanisms by which stigmatisation hinders service use remain unspecified. The present study examines how service providers, community workers and residents recount their experience of the stigmatisation of local community identity and how this shapes residents’ uptake of welfare, education and community support services. Twenty individual and group interviews with 10 residents, 16 community workers and six statutory service providers in economically disadvantaged communities in Limerick, Ireland, were thematically analysed.Analysis indicates that statutory service providers endorsed negative stereotypes of disadvantaged areas as separate and anti-social. The awareness of this perceived division and the experience of ‘stigma consciousness’ was reported by residents and community workers to undermine trust, leading to under-utilisation of community and government services. We argue that stigmatisation acts as a ‘social curse’ by undermining shared identity between service users and providers and so turning a potentially cooperative intragroup relationship into a fraught intergroup one. We suggest that tackling stigma in order to foster a sense of shared identity is important in creating positive and cooperative service interactions for both service users and providers.

Gay men and intimate partner violence: a gender analysis

Though intimate partner violence (IPV) is predominately understood as a women’s health issue most often emerging within heterosexual relationships, there is increasing recognition of the existence of male victims of IPV. In this qualitative study we explored connections between masculinities and IPV among gay men. The findings show how recognising IPV was based on an array of participant experiences, including the emotional, physical and sexual abuse inflicted by their partner, which in turn led to three processes. Normalising and concealing violence referred to the participants’ complicity in accepting violence as part of their relationship and their reluctance to disclose that they were victims of IPV. Realising a way out included the participants’ understandings that the triggers for, and patterns of, IPV would best be quelled by leaving the relationship. Nurturing recovery detailed the strategies employed by participants to mend and sustain their wellbeing in the aftermath of leaving an abusive relationship. In terms of masculinities and men’s health research, the findings reveal the limits of idealising hegemonic masculinities and gender relations as heterosexual, while highlighting a plurality of gay masculinities and the need for IPV support services that bridge the divide between male and female as well as between homosexual and heterosexual.

Home on a care order: who the children are and what the care order is for

Compared to children in other placements, there is much less known about the characteristics and needs of children in the UK who are returned to their birth parents with a care order still in place. That is in spite of evidence to suggest they face more difficulties than young people in other placements. Based on a 2009 census of looked after children in Northern Ireland, just under 10% (n = 193) were found to be living at home under a care order. Case file reviews were conducted for a quarter of these young people (n = 47) to generate descriptive statistics showing a very diverse population. That was followed by semi-structured interviews with members of eight families (ten children and eight birth parent/s), providing transcripts for thematic analysis. Nearly half of the young people whose case files were reviewed had experienced at least one home placement breakdown, but nearly two thirds had a stable last home placement. Care orders appeared to serve two functions: to give legal authority to social services for the monitoring of placements, and to facilitate family access to family support services. Replacing some care orders with supervision orders might better align legal status and actual function.