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.

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.

Treatment Foster Care for Improving Outcomes in Children and Young People: A Systematic Review

Objective: To assess the impact of treatment foster care (TFC) on psychosocial and behavioral outcomes, delinquency, placement stability, and discharge status for children and adolescents who, for reasons of severe medical, social, psychological and behavioural problems, were placed in out-of-home care in restrictive settings or at risk of placement in such settings. Method: Electronic bibliographic databases, web searches, and article reference lists were used to identify randomized controlled trials (RCTs) investigating the effectiveness of TFC with children and young people. The Cochrane Collaboration’s criteria were used to assess the methodological quality of studies that met the inclusion criteria. Wherever possible, extracted outcome data from similar studies were synthesized with random effects meta-analyses. Results: A total of 5 studies including 390 participants were included in this review. Data suggest that TFC may be a useful intervention for children and young people with complex emotional, psychological, and behavioural need, who are at risk of placements in nonfamily settings that restrict their liberty and opportunities for social inclusion. Conclusion: Although the inclusion criteria for this systematic review set a study design threshold higher than that of previous reviews, the findings mirror those of earlier reviews. While the results of individual studies generally indicate that TFC is a promising intervention for children and youth experiencing mental health problems, behavioral problems, or problems of delinquency, the evidence base is not robust and more research is needed due to the limited number of studies in this area.

Making Sense of Leaving Care: The contribution of Bridges Model of Transition to Understanding the Psycho-social process.

This paper is based on research into the transition of young people leaving public care in Romania. Using this specific country example, the paper aims to contribute to present understandings of the psycho-social transition of young people from care to independent living by introducing the use of Bridges (2002) to build on existing theories and literature. The research discussed involved mixed methods design and was implemented in three phases: semi-structured interviews with 34 care leavers, focus groups with 32 professionals, and a professional-service user working group. The overall findings confirmed that young people experience two different, but interconnected transitions - social and psychological - which take place at different paces. A number of theoretical perpectives are explored to make sense of this transition including attachment theory, focal theory and identity. In addition, a new model for understanding the complex process of transitions was adapted from Bridges’ (2002) to capture the clear complexity of transition which the findings demonstrated in terms of their psycho-social transition. The paper concludes with messages for leaving and after care services with an emphasis on managing the psycho-social transition from care to independent living.

Reflecting on outcomes for looked-after children: an ecological perspective

Despite huge investment over the past 10 years, improving outcomes for looked-after children remains elusive. A challenge for practitioners, researchers and policy-makers has been the absence of a shared conceptual framework for considering and responding to the needs of looked-after children. A second challenge relates to the measurement of outcomes. This article considers the measurement of outcomes and the multiple factors that contribute to outcomes for looked-after children. These include factors proximate to: the young person; birth family; placement; care system; children’s services; intra-agency dynamics; inter-agency dynamics; commissioning agents; and societal level. It then proposes an organising framework which provides the basis for reflecting on how multiple variables can interact to effect outcomes for looked-after children. The ecological perspective outlined in this article aims to facilitate reflection on the complex interplay between looked-after children and their environments and thereby to act as an aid to targeting interventions more effectively and efficiently.

Why is housing tenure associated with a lower risk of admission to a nursing or residential home? Wealth, health and the incentive to keep 'my home'

Background Previous research has shown that home ownership is associated with a reduced risk of admission to institutional care. The extent to which this reflects associations between wealth and health, between wealth and ability to buy in care or increased motivation to avoid admission related to policies on charging is unclear. Taking account of the value of the home, as well as housing tenure, may provide some clarification as to the relative importance of these factors.
Aims To analyse the probability of admission to residential and nursing home care according to housing tenure and house value.
Methods Cox regression was used to examine the association between home ownership, house value and risk of care home admissions over 6 years of follow-up among a cohort of 51 619 people aged 65 years or older drawn from the Northern Ireland Longitudinal Study, a representative sample of approximate to 28% of the population of Northern Ireland.
Results 4% of the cohort (2138) was admitted during follow-up. Homeowners were less likely than those who rented to be admitted to care homes (HR 0.77, 95% CI 0.70 to 0.85, after adjusting for age, sex, health, living arrangement and urban/rural differences). There was a strong association between house value/tenure and health with those in the highest valued houses having the lowest odds of less than good health or limiting long-term illness. However, there was no difference in probability of admission according to house value; HRs of 0.78 (95% CI 0.67 to 0.90) and 0.81 (95% CI 0.70 to 0.95), respectively, for the lowest and highest value houses compared with renters.
Conclusions The requirement for people in the UK with capital resources to contribute to their care is a significant disincentive to institutional admission. This may place an additional burden on carers.

Treatment Foster Care for improving outcomes in children and young people (Review)

Background: Treatment foster care (TFC) is a foster family-based intervention that aims to provide young people (and, where appropriate, their families) with a tailored programme designed to effect positive changes in their lives. TFC was designed specifically to cater for the needs of children whose difficulties or circumstances place them at risk of multiple placements and/or more restrictive placements such as hospital or secure residential or youth justice settings.

Objectives: To assess the impact of TFC on psychosocial and behavioural outcomes, delinquency, placement stability, and discharge status for children and adolescents who require out-of-home placement.

Search methods: We searched the Cochrane Controlled Trials Register (CENTRAL) 2006 (Issue 4), MEDLINE (1966 to January 2007), CINAHL (1982 to December 2006), PsycINFO (1872 to January 2007), ASSIA (1987 to January 2007), LILACS (1982 to January 2007), ERIC (1966 to January 2007), Sociological Abstracts (1963 to January 2007), and the National Research Register 2006 (Issue 4).

Selection criteria: Included studies were randomised controlled trials investigating the effectiveness of TFC with children and young people up to the age of 18 who, for reasons of severe medical, social, psychological and behavioural problems, were placed in out of home care in restrictive settings (e.g. secure residential care, psychiatric hospital) or at risk of placement in such settings.

Data collection and analysis: Titles and abstracts identified in the search were independently assessed for eligibility by the two authors (GM and WT) who also extracted and entered into REVMAN. Date were synthesised on the few occasions where this was possible. Results are presented in tabular, graphical (forest plots) and textual form.

Main results: Five studies including 390 participants were included in this review. Data suggest that treatment foster care may be a useful intervention for children and young people with complex emotional, psychological and behavioural need, who are at risk of placements in nonfamily settings that restrict their liberty and opportunities for social inclusion.

Authors’ conclusions: Although the inclusion criteria for this systematic review set a study design threshold higher than that of previous reviews, the results mirror those of earlier reviews but also highlights the tendency of the perceived effectiveness of popular interventions to outstrip their evidence base. Whilst the results of individual studies generally indicate that TFC is a promising intervention for children and youth experiencing mental health problems, behavioural problems or problems of delinquency, the evidence base is less robust than that usually reported.The Cochrane Database of Systematic Reviews is a peer reviewed, international journal, published electronically each month. The 2010 Inpact Factor for the Cochrane Database of Systematic Reviews was 6.185.The CDSR is now ranked in the top 10 of the 151 in the Medicine, General & Internal category.

The stress process in palliative cancer care:A qualitative study on informal caregiving and its implication for the delivery of care

Objective: The primary objective of this study was to examine how the comprehensive nature of the Stress Process Model could elucidate on the stressors associated with caring for a palliative cancer patient. Method: A qualitative research strategy involving home-based face-to-face interviews with 12 bereaved family caregivers was used to examine the caregiving experience. Results: The primary stressors associated with caring for the palliative cancer care patients stemmed from care recipient symptoms and personal care needs. The absence of adequate support from the formal health care delivery system was a consistent message from all participants. There was evidence of financial stress primarily associated with the purchase of private home care to supplement formal care. In contrast, the resources that family caregivers relied on to moderate the stressful effects of caregiving included extended family, friends, and neighbors. While the stress of direct caregiving was high, the study revealed that formal care was also a significant source of stress for family caregivers. Conclusion: It was concluded that an appropriately financed, integrated system of care that followed a person-centered philosophy of care would best meet the needs of the patient and his or her family. © The Author(s) 2010.

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.

Palliative care nursing in rural and urban community settings:A comparative analysis

Nurses have key roles in the coordination and delivery of community-based palliative care. The purpose of this study was to examine the differences between rural and urban community nurses' delivery of palliative care services. A survey was distributed to 277 nurses employed by a community agency in Ontario, Canada, and a 60% response rate was obtained. Nurses reported spending 27% of their time providing palliative care. Rural and urban nurses had similar roles in palliative care but rural nurses spent more time travelling and were more confident in their ability to provide palliative care. Both groups of nurses reported moderate job satisfaction and moderate satisfaction with the level of interdisciplinary collaboration in their practice. Several barriers to and facilitators of optimal palliative care provision were identified. The study results provide information about the needs of nurses that practise in these settings and may provide a basis for the development of strategies to address these needs.

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.

An exploration into the palliative and end-of-life experiences of carers of people with Parkinson's disease

Although most people with Parkinson's disease are cared for in the community, little is known about family members' lived experiences of palliative or end-of-life care. The aim of this study was to explore former carers' lived experiences of palliative and end-of-life care. In total, 15 former family caregivers of patients who had died with Parkinson's disease were interviewed using a semi-structured topic list. Findings indicated that some palliative and end-of-life care needs had not been fully addressed. Lack of communication, knowledge and coordination of services resulted in many people caring for someone with Parkinson's disease not accessing specialist palliative care services. Participants also reflected upon the physical and psychological impact of caring in the advanced stage of Parkinson's. A multi-disciplinary team-based approach was advocated by participants. These findings provide important insights into the experience of caregiving to patients with Parkinson's disease in the home at the end-of-life stage. According to palliative care standards, patients and their carers are the unit of care; in reality, however, this standard is not being met.

Barriers and Facilitators to Providing Palliative Care in Rural Communities: A Nursing Perspective

Nursing plays a key role in the coordination and delivery of palliative care services in rural settings. The purpose of this study is to identify barriers and enablers to providing palliative care in rural communities from a nursing perspective. This study utilized a qualitative descriptive design. Findings highlighted that the remoteness, limited access to resources and professional practice barriers created challenges for nurses as they tried to provide quality palliative care to their clients. System-related barriers were identified and included: lack of services, funding issues, and poor continuity of care. Despite these barriers, nurses drew from supports to optimize palliative care such as using a team approach to care, centers, utilizing local case managers and informal community members, and using palliative care resources. These results may help inform policy decisions around the needs of nurses who practice in rural settings to provide quality care to individuals who are dying and their families.

Risk factors for developing prolonged grief during bereavement in family carers of cancer patients in palliative care: A longitudinal study.

Context: Family carers of palliative care patients report high levels of psychological distress throughout the caregiving phase and during bereavement. Palliative care providers are required to provide psychosocial support to family carers; however, determining which carers are more likely to develop prolonged grief (PG) is currently unclear.

Objectives: To ascertain whether family carers reporting high levels of PG symptoms and those who develop PG disorder (PGD) by six and 13 months postdeath can be predicted from predeath information.

Methods: A longitudinal study of 301 carers of patients receiving palliative care was conducted across three palliative care services. Data were collected on entry to palliative care (T1) on a variety of sociodemographic variables, carer-related factors, and psychological distress measures. The measures of psychological distress were then readministered at six (T2; n = 167) and 13 months postdeath (T3; n = 143).

Results: The PG symptoms at T1 were a strong predictor of both PG symptoms and PGD at T2 and T3. Greater bereavement dependency, a spousal relationship to the patient, greater impact of caring on schedule, poor family functioning, and low levels of optimism also were risk factors for PG symptoms.

Conclusion: Screening family carers on entry to palliative care seems to be the most effective way of identifying who has a higher risk of developing PG. We recommend screening carers six months after the death of their relative to identify most carers with PG.

Exploring public awareness and perceptions of palliative care: a qualitative study

Background: Research suggests that the public appear to be confused about the meaning of palliative care. Given the ageing population and associated increase in the number of patients requiring palliative care, it is vital to explore the public's understanding of this concept. Health-promoting palliative care seeks to translate hospice and palliative care ideals into broader public health practice.

Aim: To explore public perceptions of palliative care and identify strategies to raise awareness.

Design: An exploratory qualitative approach. Participants: Semi-structured telephone interviews were undertaken (N = 50) with members of the public who volunteered to participate in the study. The interviews focused on knowledge and perceptions of palliative care, expectations of palliative care services and the identification of strategies to raise public awareness of palliative care. The interviews were audio recorded and content analysed.

Results: Most participants had a general knowledge of palliative care, largely influenced by their own personal experience. They identified that palliative care was about caring for people who were dying and maintaining comfort in the last days of life. Participants expectations of services included the following: holistic support, symptom management, good communication and practical support to enable choice and carer support. Key aspects identified for promoting palliative care were the development of understanding and use of the term itself and targeted educational strategies.

Conclusion: Experience of palliative care generates understanding in the general public who also have ideas for increasing knowledge and awareness. The findings can inform policymakers about strategies to raise public awareness of palliative care.