Search results for ‘Subject term:"palliative care"’ Sort:
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Stress processes in caring for an end-of-life family member: application of a theoretical model
- Authors:
- BAINBRIDGE Daryl, et al
- Journal article citation:
- Aging and Mental Health, 13(4), July 2009, pp.537-545.
- Publisher:
- Taylor and Francis
This study examined a wide range of theory-driven variables contributing to family caregiver stress. Data variables from interviews with primary family caregivers were mapped onto the factors within the Stress Process Model theoretical framework. A hierarchical multiple linear regression analysis was used to determine the strongest predictors of caregiver strain as measured by a validated composite index, the Caregiver Strain Index. The study included 132 family caregivers across south-central/western Ontario, Canada. About half of these caregivers experienced high strain, the extent of which was predicted by lower perceived program accessibility, lower functional social support, greater weekly amount of time caregivers committed to the care recipient, younger caregiver age and poorer caregiver self-perceived health. This study examined the influence of a multitude of factors in the Stress Process Model on family caregiver strain, finding stress to be a multidimensional construct. Perceived program accessibility was the strongest predictor of caregiver strain, more so than intensity of care, highlighting the importance of the availability of community resources to support the family caregiving role.
Barriers to access to medical cannabis for Canadians living with HIV/AIDS
- Authors:
- BELLE-ISLE L., HATHAWAY A.
- Journal article citation:
- AIDS Care, 19(4), April 2007, pp.500-506.
- Publisher:
- Taylor and Francis
North American studies suggest that as many as one-third of people living with HIV/AIDS self-medicate with cannabis for relief of physical and stress-related symptoms. Although cannabis remains a controlled substance in Canada, legal access has been granted to people with HIV/AIDS and other serious illness under the Marihuana Medical Access Regulations (MMAR) since 2001. Several years into the programme, however, few Canadians (∼1400) have obtained MMAR approval, suggesting that substantial obstacles remain. This paper reports findings from a 2005 survey (n=197) and focus groups conducted to identify barriers to access to medical cannabis among people living with HIV/AIDS. Most (86%) respondents who reported using cannabis as medicine continue to rely on illegal sources for their supply. They cited lack of information, product quality concerns, and an onerous, confusing application process among other problems mentioned with the MMAR. The findings are discussed in terms of policy suggestions for facilitating access to a legal source of cannabis for medical users.
Rethinking family caregiving: tailoring cognitive-behavioral therapies to the hospice experience
- Authors:
- WASHINGTON Karla T., et al
- Journal article citation:
- Health and Social Work, 39(4), 2014, pp.244-250.
- Publisher:
- Oxford University Press
Hospice family caregivers experience significantly higher rates of psychological distress than demographically similar noncaregivers. Interventions based on cognitive–behavioural therapy have been shown to reduce psychological distress in the general population by providing tools to modify thinking patterns that directly affect emotions and behaviour. Such interventions might reasonably be incorporated into hospice social work; however, numerous contextual factors must be taken into account to ensure that any interventions are appropriate to the unique needs of clients. This study contextualizes one aspect of the cognitive-behavioural model based on first-hand accounts of hospice family caregivers. Following a modified grounded theory approach, researchers engaged in a secondary analysis of data from a larger study provided in a subsample of 90 audio-recorded conversations between hospice family caregivers and interventionists. Findings indicated that distressed caregivers engaged in five dominant thinking patterns: (1) “should” statements, (2) catastrophising or minimising, (3) personalising, (4) absolute thinking, and (5) making assumptions. Implementing cognitive–behavioural therapies based on identified caregiver thinking patterns will allow hospice social workers to empower caregivers to cope more effectively with the numerous stressors they encounter while caring for a dying loved one. (Edited publisher abstract)
Burnout and death anxiety in hospice social workers
- Authors:
- QUINN-LEE Lisa, OLSON-MCBRIDE Leah, UNTERBERGER April
- Journal article citation:
- Journal of Social Work in End-of-Life and Palliative Care, 10(3), 2014, pp.219-239.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia
Hospice work has been regarded as particularly stressful due to the complexity inherent in the provision of end-of-life care. Burnout and death anxiety are especially relevant to hospice social workers because they regularly function in a high-stress, high-loss environment. The purpose of this study was threefold: to determine the prevalence of burnout and death anxiety among hospice social workers; to examine associations between burnout and death anxiety; and to explore the factors which may contribute to the development of death anxiety and burnout. Participants completed four items: the Maslach Burnout Inventory-Human Services Survey (MBI-HSS), the Death Anxiety Questionnaire (DAQ), a demographic questionnaire, and a set of open-ended questions. Findings indicate that mean scores on the subscales of the MBI-HSS ranged from the low to moderate range and that a strong positive correlation existed between death anxiety and the depersonalisation subscale of the MBI. Three key themes emerged from the qualitative data: (a) personal interest in hospice social work developed through a variety of ways; (b) although death anxiety decreased from exposure and understanding of the death process, there was increased death anxiety surrounding working with certain patients; and (c) burnout was primarily related to workload or difficult cases. (Edited publisher abstract)
Informing social work practice through research with parent caregivers of a child with a life-limiting illness
- Authors:
- CADELL Susan, KENNEDY Kimberly, HEMSWORTH David
- Journal article citation:
- Journal of Social Work in End-of-Life and Palliative Care, 8(4), October 2012, pp.356-381.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia
For parents, caring for a child with a life-limiting illness (LLI) is a stressful experience that compounds the usual challenges of parenting. The negative aspects of caring for a child with an LLI are well documented. In the face of such adversity, parent caregivers can also experience positive changes caring for children with even the most serious conditions. This paper presents results from an investigation into posttraumatic growth in 273 parents caring for a child with a LLI in Canada and the United States. Two themes were prominent: the first describes stress related to financial burden associated with caregiving; and the second concerns the posttraumatic growth experienced by the parent caregivers. This provides a unique and important platform for parent caregivers' experiences that can inform the work of paediatric palliative care professionals.
End-of-life care for people with intellectual disabilities: paid carer perspectives
- Authors:
- RYAN Karen, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 24(3), May 2011, pp.199-207.
- Publisher:
- Wiley
An increasing number of intellectual disability staff are now expected to care for service users towards the end-of-life. This study aimed to examine staff experiences of caring for a person with intellectual disabilities with palliative care needs and to explore the effects of this on staff. A total of 64 individuals from intellectual disability services working in different disciplines and a range of work settings took part in 12 focus groups. Interviews were analysed using framework analysis. The findings indicated that the participants were strongly motivated to provide high quality palliative care and felt the experience enriched practice. However, they considered themselves to be inadequately prepared to meet need and this often led to staff stress. A number of issues appeared to heighten stress: situations when end-of-life care decision making was challenging; when staff felt ‘pushed out’ by relatives; and when staff did not have sufficient support or time to provide care or mourn the loss of service users. The study draws attention to areas where strategies should be developed to support staff in order to improve the quality of palliative care provided to people with intellectual disabilities.
Moral distress experienced by health care professionals who provide home-based palliative care
- Authors:
- BRAZIL Kevin, et al
- Journal article citation:
- Social Science and Medicine, 71(9), November 2010, pp.1687-1691.
- Publisher:
- Elsevier
Health care professionals regularly encounter situations of moral conflict and distress which can result in adverse outcomes for both health care providers and those in their care. This study examined the experience of moral distress from a broad range of health care occupations that provide home-based palliative care as the initial step of addressing the issue. A critical incident approach was used in qualitative interviews to understand the experiences on moral distress from 18 health care providers drawn from five home visiting organisations in Ontario, Canada. Most participants described at least two critical incidents in their interview generating a total of 47 critical incidents. Results revealed 11 issues that triggered moral distress which clustered into three themes: the role of informal caregivers; challenging clinical situations; and service delivery issues. The authors concluded that the training and practice environments for health care providers need to be designed to identify the moral challenges experienced in their work.
Gender differences among Canadian spousal caregivers at the end of life
- Authors:
- BRAZIL Kevin, et al
- Journal article citation:
- Health and Social Care in the Community, 17(2), March 2009, pp.159-166.
- Publisher:
- Wiley
The primary research question in this study was to determine gender differences in caregiver strain among spousal caregivers. Secondary research questions investigated included (i) the presence of gender differences among spousal caregivers in the duration of care provided; (ii) gender differences among spousal caregivers in formal service use and unmet service needs; and (iii) whether support to care recipients in activities of daily living varied according to the gender of the spousal caregiver. The study was conducted over a 2-year period (2000–2002) in south-central Ontario, Canada. The study sample included 283 informal spousal caregivers (198 females, 85 males) each of whom were caring for a terminally ill spouse at the time they participated in a cross-sectional telephone survey. The analysis showed that females reported a significantly greater level of caregiving strain than males. When considering source of support in activities of daily living for the care recipient, differential assistance was noted on the basis of caregiver gender. Female caregivers had almost twice the odds of providing support in toileting-related tasks than male caregivers, while male caregivers had approximately twice the odds of providing support in mobility-related tasks. Care recipients who had a female caregiver had lower odds of receiving support from family and friends in tasks associated with personal care. To address gender differences in caregiving, a realistic home-based palliative care approach must take into account the importance of informal caregivers.
Reducing emotional distress in people caring for patients receiving specialist palliative care: randomised trial
- Authors:
- WALSH Kiri, et al
- Journal article citation:
- British Journal of Psychiatry, 190(2), February 2007, pp.142-147.
- Publisher:
- Cambridge University Press
Caring for relatives with advanced cancer may cause psychological and physical ill health. The aim was to evaluate the effectiveness of increased support for distressed, informal carers of patients receiving palliative care. The sample was composed of 271 informal carers who scored over 5 on the 28-item General Health Questionnaire (GHQ–28). The intervention comprised six weekly visits by a trained advisor. Primary outcome was carer distress (GHQ–28) at 4-week, 9-week and 12-week follow-up. Secondary outcomes were carer strain and quality of life, satisfaction with care, and bereavement outcome. Scores on the GHQ–28 fell below the threshold of 5/6 in a third of participants in each trial arm at any follow-up point. Mean scores in the intervention group were lower at all time points but these differences were not significant. No difference was observed in secondary outcomes. Carers receiving the intervention reported qualitative benefit. The intervention might have been too brief, and ongoing help might have had accruing benefits. Alternatively, informal carers of patients with cancer may already receive considerable input and the advisor’s help gave little additional advantage; or caring for a dying relative is extremely stressful and no amount of support is going to make it much better.
Homeless palliative care toolkit
- Authors:
- KENNEDY Peter, et al
- Publication year:
- 2018
- Place of publication:
- London
An online toolkit to help staff working with homeless people who have advanced ill health and are potentially approaching end of life. The toolkit has been adapted from a resource pack previously developed by St Mungo’s and Marie Curie, using findings from a large piece of collaborative research. Each section contains resources, tools and activity worksheets to help in planning and providing person-centred, multi-agency care for homeless people. Sections cover: identifying clients of concern; supporting clients' palliative and end of life care; multi-agency working and person-centred care; communicating about what matters to clients; and bereavement. It also includes a section for staff covering self-care and strategies for managing stress. The research found that one of the reasons people are dying without support is that they are not recognized to be suffering from a terminal illness. The toolkit suggests that ‘concern about a client’s deteriorating health’ should act as a trigger for action, rather than waiting for a palliative or terminal diagnosis. The toolkit was created by a research partnership between Pathway, Marie Curie Palliative Care Research department (UCL), St Mungo’s and Coordinate My Care. (Edited publisher abstract)