Family caregiver views on patient-centred care at the end of life

Aim: The purpose of this study was to evaluate the patient-centredness of community palliative care from the perspective of family members who were responsible for the care of a terminally ill family member. Method: A survey questionnaire was mailed to families of a deceased family member who had been designated as palliative and had received formal home care services in the central west region of the Province of Ontario, Canada. Respondents reported on service use in the last four weeks of life; the Client-Centred Care Questionnaire (CCCQ) was used to evaluate the extent to which care was patient-centred. The accessibility instrument was used to assess respondent perception of access to care. Descriptive and inferential statistics were used for data analyses. Results: Of the 243 potential participants, 111 (46.0%) family caregivers completed the survey questionnaire. On average, respondents reported that they used five different services during the last four weeks of the care recipient's life. When asked about programme accessibility, care was also perceived as largely accessible and responsive to patients' changing needs (M=4.3 (SD=1.04)]. Most respondents also reported that they knew what service provider to contact if they experienced any problems concerning the care of their family member. However, this service provider was not consistent among respondents. Most respondents were relatively positive about the patient-centred care they received. There were however considerable differences between some items on the CCCQ. Respondents tended to provide more negative ratings concerning practical arrangement and the organization of care: who was coming, how often and when. They also rated more negatively the observation that service providers were quick to say something was possible when it was not the case. Bivariate analyses found no significant differences in CCCQ or accessibility domain scores by caregiver age, care recipient age, income, education and caregiver sex. Conclusions: Patient-centred care represents a service attribute that should be recognized as an important outcome to assess the quality of service delivery. This study demonstrates how this attribute can be evaluated in the provision of care. © 2011 The Authors. Scandinavian Journal of Caring Sciences © 2011 Nordic College of Caring Science.

Coordination of palliative cancer care in the community: "unfinished business"

Goal: This study assessed the degree to which services in south-central Ontario, Canada, were coordinated to meet the supportive care needs of palliative cancer patients and their families. Participants and method: Programs within the region that were identified as providing supportive care to palliative cancer patients and their families were eligible to participate in the study. Program administrators participated in a semi-structured interview and direct-care providers completed a survey instrument. Main results: Administrators from 37 (97%) of 38 eligible programs and 109 direct-care providers representing 26 (70%) programs participated in the study. Most administrator and direct-care respondents felt that existing services in the community were responsive to palliative care patients' individual needs. However, at a system level, most respondents in both groups felt that required services were not available and that resources were inadequate. The most frequently reported unmet supportive care need identified by both respondent groups was psychological/social support. Most administrator (69%) and direct-care (64%) respondents felt that palliative care services were not available when needed. The majority of administrator and direct-care respondents were satisfied with the exchange of patient information within and between programs, although direct-care staff identified a deficit in information transferred on palliative care patients' social/psychological status. Conclusions: The study demonstrated the value of a theory-based approach to evaluate the coordination of palliative cancer care services. The findings revealed that service programs faced significant challenges in their efforts to provide coordinated care. © 2009 Springer-Verlag.

Quality of care for residents dying in Ontario long-term care facilities:Findings from a survey of directors of care

The purpose of this study was to collect information on the practice of end-of-life (EOL) care in long-term care (LTC) facilities in the Province of Ontario, Canada. A cross-sectional survey of directors of care in all licensed LTC facilities in the province was conducted between September 2003 and April 2004. Directors of care from 426 (76% response rate) facilities completed the postal survey questionnaire. The survey results identified communication problems between service providers and families, inadequate staffing levels to provide quality care to dying residents, and the need for training to improve staff skills in providing EOL care. Directors of care endorsed the use of a number of strategies that would improve the care of dying residents. Logistic regression analysis identified the eight most important items predictive of facility staff having the ability to provide quality EOL care. The findings contribute to the current discussion on policies for meeting the care needs of residents in LTC facilities until life's end. © 2006 Centre for Bioethics, IRCM.

Towards improving the co-ordination of supportive cancer care services in the community

In this paper an evaluation approach to assess the co-ordination of supportive community cancer care is presented. The aim of the study was to identify current gaps in co-ordination of services in a selected region in the province of Ontario, Canada, determine how consistent these gaps were across the province of Ontario, and develop service design considerations for improving the co-ordination of supportive cancer care services in the province of Ontario. The study addressed services required by two populations - clients who had been recently diagnosed and those in the palliative stages of cancer. The evaluation was theory-driven and incorporated evidence from three methods: a systematic literature review, a community case study and a provincial scan. The results revealed the absence of a formal supportive cancer care system and a complex community care system. Supportive cancer care was shown to be delivered by a range of generalist programs that lacked specialisation in addressing the unique needs of cancer clients. In addition, there was no clear evidence of leadership for co-ordinating supportive cancer care, where client care was most often provided by multiple programs at any given point in time. The study generated recommendations to improve co-ordination of supportive cancer care at both the administrative as well as direct care level. © 2004 Elsevier Ireland Ltd. All rights reserved.

Perceptions of resident behavior problems and their clinical management in Long Term Care facilities

The objective of this study was to describe the perceptions of Long Term Care (LTC) service providers in urban Canadian care facilities regarding the prevalence and nature of resident behavior problems and how staff manage these problems. Key informants from 15 LTC facilities housing 1,928 residents, participated in a cross sectional survey which employed semi-structured telephone interviews. Respondents estimated that on average 61% (n = 1,176) of residents had some type of mental health/behavioral problem, with facility estimates ranging from 20% to 90%. The most frequently reported problem behaviors included: general agitation and restlessness (36%); pacing and aimless wandering (28%); hoarding things (24%); hitting either self or others (23%); and verbal aggression (22%). Behaviors reported by respondents as "disruptive" or "very disruptive" were screaming (13%), sexual disinhibition (10%), and hitting either self or others (10%). The most common interventions used by staff were behavioral interventions followed by the use of medications. Low levels of staffing and educational training of staff were among the most common factors recognized as contributing to the difficulty in caring for residents with mental health needs.

Perceptions of the process of care among caregivers and care recipients in Dementia Care Networks

The Dementia Care Networks Study investigated 4 community-based, not-for-profit dementia care networks in Ontario, Canada. Investigators examined whether sociodemographic and health characteristics, type of support network, and amount of service use among care recipients and caregivers (n = 267 dyads) were associated with experiences with care processes. The process-of-care constructs were: family physicians' awareness of services; experiences with health care workers, and assessment and placement activities. The findings highlighted that family physicians' understanding of dementia and their ability to work with the dyad to become aware of and accept services, was an important component in the dyad's satisfaction. If caregivers received home support and the care recipients received emotional support from their social support network, they were more likely to be satisfied with their experiences with health care workers. In summary, increased awareness and provision of services were associated with more positive perceptions of network effectiveness. © 2007 Sage Publications.

Evaluating the effectiveness of community-based dementia care networks:The Dementia Care Networks' Study

Purpose: The Dementia Care Networks' Study examined the effectiveness of four community-based, not-for-profit dementia networks. The study involved assessing the relationship between the types of administrative and service-delivery exchanges that occurred among the networked agencies and the network members' perception of the effectiveness of these exchanges. Design and Methods: With the use of a case-study method, the evolution, structure, and processes of each network were documented. Social network analysis using a standardized questionnaire completed by member agencies identified patterns of administrative and clinical exchanges among networked agencies. Results: Differences were found between the four networks in terms of their perceptions of service-delivery effectiveness; perceptions of administrative effectiveness did not factor significantly. Exchanges between groups of agencies (cliques) within each of the four networks were found to be more critical than those between individual agencies within each network. Implications: Integration-measured by the types of exchanges within as opposed to across networks-differentiated the four networks studied. This research contributes to our understanding of the use of multiple measures to evaluate the inner workings of service delivery and their impact on elder health and elder health care. Copyright 2005 by The Gerontological Society of America.

Resource utilisation and costs of palliative cancer care in an interdisciplinary health care model

This paper presents a detailed description of health care resource utilisation and costs of a pilot interdisciplinary health care model of palliative home care in Ontario, Canada. The descriptive evaluation entailed examining the use of services and costs of the pilot program: patient demographics, length of stay broken down by disposition (discharged, alive, death), access to services/resources, use of family physician and specialist services, and drug use. There were 434 patients included in the pilot program. Total costs were approximately CAN$2.4 million, and the cost per person amounted to approximately CAN$5586.33 with average length of stay equal to over 2 months (64.22 days). One may assume that length of stay would be influenced by the amount of service and support available. Future research might investigate whether in-home palliative home care is the most cost effective and suitable care setting for those patients requiring home care services for expected periods of time. © 2009 SAGE Publications.

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.

Caregiving at the end of life:perspectives from spousal caregivers and care recipients.

OBJECTIVE: The purpose of this study is to examine the perspectives of both the spousal caregiver and care recipient on the caregiving experience in home-based palliative care. METHODS: A qualitative research strategy involving home-based face-to-face interviews with older palliative care patients and their spousal caregivers was used to examine the caregiving experience. RESULTS: Ten spousal caregivers and care recipient dyads participated in the study. Most informal caregivers viewed caregiving as an extension of the family relationship where caregiving responsibilities evolved over time. Spousal caregivers identified many negative reactions to caregiving, such as fatigue or weariness, depression, anger and sadness, financial stresses, and lack of time. Care recipients acknowledged the emotional and financial strain and expressed concern for their spouses. Both caregivers and care recipients were appreciative of home care services although they identified the need for additional services. They also identified difficulties in communication with formal providers and poor coordination of care among the various services. Both caregivers and care recipients disclosed some challenges with informal supports, but on the whole felt that their presence was positive. Additional positive aspects of caregiving reported by spouses included strengthened relationship with their spouse and discovering emotional strength and physical abilities in managing care. SIGNIFICANCE OF RESULTS: Health care and social service professionals need to recognize and understand both caregiver and care recipient perspectives if they are to successfully meet the needs of both members of the dyad.

Hospice at Home service:The carer's perspective

Goals of the work: The aim of this study was to explore the bereaved caregivers' experience of the Hospice at Home service delivered in one region of the UK. Materials and methods: Three hundred and ten bereaved caregivers identified by the Community Specialist Palliative Care Team or Hospice at Home nurse, who met inclusion criteria, were sent a postal questionnaire to explore their views and experiences of the Hospice at Home service. Data were collected during 2002. Main results: In total, 128 caregivers responded, providing a 41% response rate. Most caregivers believed that the Hospice at Home service enabled their loved one's wish to be cared for and to die at home to be fulfilled. A number of suggestions were made relating to increased awareness of the service, training for staff, coordination of service delivery and bereavement support. Conclusions: The bereaved caregivers were thankful for the Hospice at Home service; however, the need for practical support, increased awareness of the Hospice at Home service and bereavement support were also identified. Although the bereaved caregivers provided a valuable insight in evaluating service provision, it is acknowledged that some caregivers are often so grateful for the treatment and care received that they tend to forget or ignore their less pleasant experiences. Further research is therefore required using an in-depth qualitative approach investigating on the carers' views and experiences of accessing the Hospice at Home service. © 2006 Springer-Verlag.

When care is left to roam: Carers' experiences of grassroots nonprofit services in Ireland

Increasingly countries are turning to nonprofit organisations to provide health and social care, particularly for people with disabilities. Alongside this change, debates continue about how states should manage the relationship with such organisations. Should features of the old-style "welfare" model be retained? Should aspects of the "new public management" model be chosen to measure the impact of the work? Yet others argue that grassroots organisations should form the basis of a service provision system. In the context of these debates, Ireland serves as an interesting case study of the system of care that can emerge when the state operates a "relaxed control" approach. This paper takes the perspectives of users themselves: family carers who are accessing services for a disabled adult child, to examine the effects of this approach on the ground. We show how geography played a central role in shaping these experiences, and discuss how we can learn from the Irish context. Rather than arguing for narrowly defined contractual measures, we conclude by proposing a renewed focus on relationship building with the aim of effective system operation, in the future of care services. © 2010 Elsevier Ltd.

End-of-Life care and people with intellectual disabilities: A multi-media educational resource

Aim This study aimed to develop and evaluate a multi-media educational resource in palliative and end-of-life care for specialist palliative care and intellectual disability services which promoted collaborative working. Methods: A mixed methods design involving three phases was used. Qualitative data were obtained from semi-structured interviews with a purposive sample of professionals (n=30) and family carers (n=5) and from two focus groups with people with intellectual disabilities (n=17). Data were content analysed as outlined y Newell and Burnard (2006). This identified training needs and issues, in end-of-life care for this population which were confirmed through quantitative data from services in a regional scoping study analysed using descriptive statistics. A DVD and manual were developed and evaluated with twelve professionals. Data were collected using a solicited diary, the Readiness for Inter-professional Learning Scale, Likert Scales and an evaluation questionnaire. Thematic analysis and descriptive statistics appropriate to data were used.Results: Findings suggest that this resource demonstrates the need for and benefits of partnership working and transferability of this learning to practice could address issues at end-of-life for people with intellectual disabilities. Conclusions: Findings of this study have importance for partnership working and service provision in end-of-life care for this population.

An international review of the patterns and determinants of health service utilisation by adult cancer survivors

Background: There is a need to review factors related to health service utilisation by the increasing number of cancer survivors in order to inform care planning and the organisation and delivery of services.

Methods: Studies were identified via systematic searches of Medline, PsycINFO, CINAHL, Social Science Citation Index and the SEER-MEDICARE library. Methodological quality was assessed using STROBE; and the Andersen Behavioural Model was used as a framework to structure, organise and analyse the results of the review.

Results: Younger, white cancer survivors were most likely to receive follow-up screening, preventive care, visit their physician, utilise professional mental health services and least likely to be hospitalised. Utilisation rates of other health professionals such as physiotherapists were low. Only studies of health service use conducted in the USA investigated the role of type of health insurance and ethnicity. There appeared to be disparate service use among US samples in terms of ethnicity and socio-demographic status, regardless of type of health insurance provisions- this may be explained by underlying differences in health-seeking behaviours. Overall, use of follow-up care appeared to be lower than expected and barriers existed for particular groups of cancer survivors.

Conclusions: Studies focussed on the use of a specific type of service rather than adopting a whole-system approach and future health services research should address this shortcoming. Overall, there is a need to improve access to care for all cancer survivors. Studies were predominantly US-based focussing mainly on breast or colorectal cancer. Thus, the generalisability of findings to other health-care systems and cancer sites is unclear. The Andersen Behavioural Model provided an appropriate framework for studying and understanding health service use among cancer survivors. The active involvement of physicians and use of personalised care plans are required in order to ensure that post-treatment needs and recommendations for care are met.

The health status and health service needs of primary caregivers of cancer survivors: a mixed methods approach

This study aimed to measure the health status and care needs of people who provide informal care to cancer survivors in the UK. Semi-structured interviews were conducted with a purposive sample of 24 cancer professionals to identify the care needs of caregivers. In addition, we conducted a postal survey measuring the health and wellbeing (SF-36) and health service utilisation of 98 primary caregivers of a random sample of cancer survivors, 2-20 years post-treatment. Interviews indicated that caregivers’ needs were largely unmet. In particular, there appeared to be a need in relation to statutory health care provision, information, psychological support and involvement in decision making. There were no significant differences between survivors and caregivers in terms of mental health scores; and caregivers performed better on physical health domains compared to cancer survivors. Compared to UK norms and norms for caregivers of other chronic conditions, cancer caregivers had substantially lower scores on each SF-36 health domain. Cancer may impact negatively on an informal caregiver’s health long after treatment has ended. Providing appropriate and cancer specific information may alleviate difficulties and improve health and wellbeing. Specific concentration should be given to the development and delivery of information support for caregivers of post-treatment cancer survivors.