Measuring Family Members' Satisfaction with End-of-Life Care in Long-Term Care: Adaptation of the CANHELP Lite Questionnaire
Citation
Shevaun Nadin, Mohammed Ali Miandad, Mary Lou Kelley, Jill Marcella, and Daren K. Heyland (June, 2017). BioMed Research International Volume 2017 (2017), Article ID 4621592, 17 pages https://doi.org/10.1155/2017/4621592
Abstract
Rationale. Improving end-of-life care (EOLC) in long-term care (LTC) homes requires quality measurement tools that assess families’ satisfaction with care. This research adapted and pilot-tested an EOLC satisfaction measure (Canadian Health Care Evaluation Project (CANHELP) Lite Questionnaire) for use in LTC to measure families' perceptions of the EOLC experience and to be self-administered. Methods and Results. Phase 1. A literature review identified key domains of satisfaction with EOLC in LTC, and original survey items were assessed for inclusiveness and relevance. Items were modified, and one item was added. Phase 2. The revised questionnaire was administered to 118 LTC family members and cognitive interviews were conducted. Further modifications were made including reformatting to be self-administered. Phase 3. The new instrument was pilot-tested with 134 family members. Importance ratings indicated good content and face validity. Cronbach’s alpha coefficients (range: .88–.94) indicated internal consistency. Conclusion. This research adapted and pilot-tested the CANHELP for use in LTC. This paper introduces the new, valid, internally consistent, self-administered tool (CANHELP Lite Family Caregiver LTC) that can be used to measure families’ perceptions of and satisfaction with EOLC. Future research should further validate the instrument and test its usefulness for quality improvement and care planning.
Palliative Care and Experiential Learning
Citation
Kaasalainen S, Brazil K, Kelley ML. (2014, June). Building capacity in palliative care for personal support workers in long term care through experiential learning. International Journal of Older People Nursing, 9(2), 151-158. doi: 10.1111/opn.12008. First published online in Oct 2012.
Abstract
Providing palliative care in long-term care (LTC) homes is an area of growing importance. As a result, attention is being given to exploring effective palliative care learning strategies for personal support workers (PSWs) who provide the most hands-on care to LTC residents.
Book Chat to Improve Attitudes
Citation
Larocque N, Schotsman C, Kaasalainen S, Crawshaw D, McAiney C, Brazil E. (2014). Using a book chat to improve attitudes and perceptions of long-term care staff about dementia. Journal of Gerontological Nursing, 40(5): 46-53.
Abstract
This study sought to evaluate a book chat intervention based on Lisa Genova's novel, Still Alice, to influence long-term care (LTC) staff perceptions and attitudes when caring for individuals with dementia. Content analysis of the participants’ responses revealed that the book chat positively influenced their attitudes and perceptions toward dementia, particularly by providing more insight into the individual’s personal struggle with the dis- ease. Furthermore, participants found that the book chat influenced their care practices. By creating innovative learning opportunities, attitudes and perceptions about dementia care can be transcended and greatly benefit staff, family, and residents.
Spiritual Care and Volunteers
Citation
Landau L, Brazil K, Kaasalainen S. & Crawshaw D. (2013). Training and sustaining: A model for volunteer spiritual care visitors in long term care. Journal of Religion, Spirituality & Aging, 25( 3), 216-237. DOI: 10.1080/15528030.2012.741562
Green Taylor & Francis (Routledge): STM, Behavioural Science and Public Health Titles
Abstract
Volunteer provision of spiritual care in an Ontario, Canada, long-term care home was the focus of a case study regarding resident spiritual care needs in a municipal environment that does not fund professional chaplains. Scope of practice issues, spiritual care skills in long-term care, and diversity sensitivity were identified as key areas for volunteer education. Volunteer training modules were designed using Theological Reflection as the theoretical framework for spiritual care provision. An innovative model for sustainable spiritual care provision in long-term care is proposed, which relies upon leadership from a professional chaplain (staff or volunteer).
Nurses Knowledge and Competence Caring for the Dying
Citation
Brazil K, Brink P, Kaasalainen S, Kelley ML, McAiney C. (2012). Knowledge and perceived competence among nurses caring for the dying in long-term care homes. International Journal of Palliative Nursing 18(2), 77-83.
Abstract
The quality of care provided to dying long-term care(LTC) residents is often inadequate which may be due to the lack of formal training that LTC staff receive in palliative care (PC). This cross-sectional study assessed PC knowledge and self-efficacy in ability to provide PC in sample of registered nurses working in LTC homes.
Advance Care Planning Programs and Dementia
Citation
Wickson-Griffiths A, Kaasalainen S, Ploeg J, McAiney C. (2014, Mar). A Review of Advance Care Planning Programs in Long-Term Care Homes: Are they Dementia Friendly? Nursing Research & Practice, http://dx.doi.org/10.1155/2014/875897
Abstract
Persons living with dementia in the long-term care home (LTCH) setting have a number of unique needs, including those related to planning for their futures. It is therefore important to understand the advance care planning (ACP) programs that have been developed and their impact in order for LTCH settings to select a program that best suits residents' needs.
Comfort Care Rounds
Citation
Wickson-Griffiths A., Kaasalainen S., Brazil K., McAiney C., Crawshaw D., Turner M., & Kelley, M. L. (2015). Comfort care rounds: A staff capacity-building initiative in long-term care homes. Journal of Gerontological Nursing, 41(1), 42-48.
Abstract
This article reports a pilot evaluation of Comfort Care Rounds (CCRs)- a strategy for addressing long-term care home staff's palliative and end-of-life care educational and support needs. Interviews were conducted to understand staff members' perspectives and feedback on the implementation and application of CCRs. Study participants identified that effective advertising, interest, and assigning staff to attend CCRs facilitated their participation. The key barriers to their attendance included difficulty in balancing heavy workloads and scheduling logistics. Interprofessional team member representation was sought but was not consistent. Study participants recognized the benefits of attending; however, they provided feedback on how the scheduling, content, and focus could be improved. Overall, study participants found CCRs to be beneficial to their palliative and end-of-life care knowledge, practice, and confidence. However, they identified barriers and recommendations, which warrant ongoing evaluation.
Perspectives on End-of-life Care in Long-Term Care Homes
Citation
Sims- Gould, J., Wiersma, E., Kelley, M.L., MacLean, M., Habjan, S., Arseneau, L., & Kozak, J.F. (2010). Perspectives on end-of-life care in long-term care homes: Implications for whole person and palliative care. Journal of Palliative Care, 26(2), 122-129
Abstract
This study holistically explores the experience of dying and end-of-life care for older persons with dementia in long-term care (LTC) from the perspective of care providers. Researchers interviewed LTC staff, residents' families, volunteers, management staff, and spiritual advisers/clergy over a five day period. Three common themes were identified: tension between completing job tasks on time and 'being there' for residents; the importance of family-like bonds between front-line staff and residents; and the importance of communication amony staff and between staff and residents and their families at the end of life.
Developing and Implementing Peer-Led Intervention to Support Staff in Long-Term Care Homes Manage Grief
Citation
Jo-Ann Vis, Kimberley Ramsbottom, Jill Marcella, Jessica McAnulty, Mary Lou Kelley, Katherine Kortes-Miller, Kristen Jones-Bonofiglio (2016). Developing and Implementing Peer-Led Intervention to Support Staff in Long-Term Care Homes Manage Grief. Sage Open. July-September 2016. 1-10. Published online August 30. DOI: 10.1177/2158244016665888
Abstract
Front-line staff in long-term care (LTC) homes often form strong emotional bonds with residents. When residents die, staffs’ grief often goes unattended, and may result in disenfranchised grief. The aim of this article is to develop, implement, and assess the benefits of a peer-led debriefing intervention to help staff manage their grief and provide LTC homes an organizational approach to support them. This research was nested within a 5-year participatory action research to develop and implement palliative care programs within four LTC homes in Canada. Data specific to this debriefing intervention included questionnaires from six peer debriefers, field observations of six debriefings, and qualitative interviews with 23 staff participants. An original peer-led debriefing intervention (INNPUT) for LTC home staff was developed and implemented. Data revealed that the intervention offered staff an opportunity to express grief in a safe context with others, an opportunity for closure and acknowledgment. The INNPUT intervention benefits staff and offers an innovative, sustainable, easy to use strategy for LTC homes.
Using Simulation to Improve Communication Skills
Citation
Kortes-Miller, K., Jones-Bonofiglio, K., Hendrickson, S., & Kelley, M.L. (2015). Dying with Carolyn: Using simulation to improve communication skills of unregulated care providers working in long-term care. Journal of Applied Gerontology. Date of Electronic Publication: 2015 Mar 29 [Epub ahead of print]
Abstract
This research examines the development, implementation, and evaluation of an educational intervention utilizing high-fidelity simulation to improve front line staff members' confidence and skills to communicate about death and dying in long term care homes. The target group was unregulated care providers who provide palliative care for residents and their families.
Factors Associated with Death in Long-Term Care
Citation
Brink, P. & Kelley, M.L. (2015). Death in long-term care: A brief report examining factors assoc iated with death within 31 days of assessment. Palliative Care: Research and Treatment.
Abstract
The ability to estimate prognosis using administrative data has already been established. Research indicates that residents newly admitted to long-term care are at a higher risk of mortality. Studies have also examined mortality within 90 days or a year. Focusing on 31 days from assessment was important because it appears to be clinically useful for care planning in end-of-life; whereby, greater utility may come from identifying residents who are at risk of death within a shorter time frame so that advance care planning can occur.
Supporting Direct Care Staff with Their Grief and Bereavement
Citation
Marcella, J., Kelley, M.L. (2015). Death is part of the job in long-term care homes: Supporting direct care staff with their grief and bereavement. SAGE Open, 1-15.
Abstract
For long-term care (LTC) home staff who work directly with residents, death, dying, and grief are day-to-day experiences in their working life. However, staff are often overlooked for grief and bereavement support. This exploratory research used a qualitative approach to understand LTC staff's grief and bereavement experience and to identify the perceived support needs of nurses and personal support workers who work in two faith-based non-profit care homes in Thunder Bay, Ontario, Canada. Findings indicated that participants’ experiences are complex, shaped by the emotional impact of each loss, the cumulative burden of ongoing grief, an organizational culture in LTC where death is hidden, and the lack of organizational attention to staffs’ support and education needs. Eight recommendations were developed from the findings. It is hoped that this research will assist in the development of organizational policy and procedures, addressing the health and well-being of direct care workers in LTC homes.
Strategies to Improve Advance Care Planning
Citation
Ramsbottom, K., & Kelley, M.L. (2014). Developing strategies to improve advance care planning in long term care homes: Giving voice to residents and their family members. International Journal of Palliative Care, 2014.
Abstract
Long term care (LTC) homes, also known as residential care homes, commonly care for residents until death, making palliative care and advance care planning (ACP) important elements of care. The objective of this research was to understand experiences, perspectives, and preferences to guide quality improvement of ACP in LTC. This qualitative descriptive study conducted 34 individual semistructured interviews in two LTC homes, located in Canada. The participants were 31 family members and three staff, consisting of a front line care worker, a registered nurse, and a nurse practitioner. All participants perceived ACP conversations as valuable to provide 'resident-centred care'; however, none of the participants had a good understanding of ACP, limiting its effectiveness. Strategies generated through the research to improve ACP were as follows: educating families and staff on ACP and end-of-life care options; better preparing staff for ACP conversations; providing staff skills training and guidelines; and LTC staff initiating systematic, proactive conversations using careful timing. These strategies can guide quality improvement of palliative care and development of ACP tools and resources specific to the LTC home sector.
Capacity Development in Participatory Action Research
Citation
Kelley, M.L., McKee, M. (2013). Community capacity development in participatory action research. In Hockley, J., Froggatt, K., & Heimerl, K. (Eds.). Participatory Research in Palliative Care: Actions and Reflections (Chapter 4), Oxford University Press.
Abstract
A book chapter proposing and illustrating an integrative framework that can be used to guide participatory action research in order to develop palliative care programs within long-term care (LTC) homes for elderly people.
Bereaved Family Members' Satisfaction with End-of-Life Care
Citation
Garlick, Jenna. MSW. (2014) Bereaved Family Members’ Satisfaction with End-of- Life Care within Four Ontario Long Term Care Homes. A project submitted in partial fulfillment of the Master of Social Work program, Gerontology Specialization. Lakehead University. (60 pp)
Abstract
Background: Understanding bereaved family members' perspectives on end-of- life care offers long term care (LTC) homes a valuable quality improvement opportunity to better meet the needs of residents and families at end of life.
Method: The study adopted the Family Perception of Care Scale (FPCS) which is a 27-item survey that collects information about bereaved family members' perceptions of and satisfaction with end-of-life care in LTC. It has four domains; 1) Resident care, 2) Family Support, 3) Communication, 4) Rooming, and provided room for comments (Vohra, Brazil, Hanna, Abelson, 2004). In conjunction with the "Improving Quality of Life for People Dying in LTC homes" research (www.palliativealliance.ca) the FPCS was mailed to 152 family members of residents who died during 2012 in four Ontario long-term care homes. Eighty-six surveys were returned (57% response rate). Quantitative data were analyzed using SPSS and qualitative data were analyzed thematically.
Results: The overall satisfaction score was 83/100; indicating family members were generally satisfied with the end-of-life care. Satisfaction did not significantly differ between homes. Important items for satisfaction were location of death, pain management, dignity, being informed about resident's health and feeling welcomed in the home. Scores were higher for rooming (86) and communication (86) and lower for resident care (82) and family support (76). Survey comments were organized into the four domains of the FPCS. Extensive open–ended comments made by 63% of respondents showed their desire to share their experiences and contribute to quality improvement.
Conclusions: Results indicate that the structural characteristics of the home are less important to family satisfaction than resident care, such as pain control, dignity, communication and relationships. Participants were more satisfied when the resident died in the long term care home than when the death occurred in hospital. This finding suggests a need for more resident and family education on the benefits of advance care planning and receiving palliative care in the LTC home. Furthermore, indicators of family satisfaction with end-of- life care need to be included more predominantly in LTC satisfaction surveys for quality improvement. Family member satisfaction and perceptions have policy implications and can guide education and training in long term care homes.
An Assessment of Organizational Infrastructure in LTC Homes
Citation
McAnulty, Jessica. MSW. (2011) An Assessment of Organizational Infrastructure Gaps, Barriers and Enablers to Developing Formal Palliative Care Programs in LTC Homes: A Comparative Case Study of Two Long-Term Care Homes in Northern Ontario. Thesis prepared in partial fulfillment of the Master of Social Work program, Gerontology Specialization, Lakehead University. (126 pp)
Abstract
This research paper is a sub-study of a five-year Social Sciences and Humanities Research Council of Canada (SSHRC) funded Community-University Research Alliance project: Improving Quality of Life for People Dying in Long-Term Care Homes, in progress from 2009 to 2013. This sub-study uses a comparative case study design and the Canadian Hospice Palliative Care Association's (CHPCA) model of practice as a framework to understand how the organizational infrastructure of two long-term care (LTC) homes affects their capacity to develop and deliver formal palliative care programs. The three main goals of this sub-study were: 1) to identify resources and functions within the two LTC homes that serve as enablers to support palliative care development and delivery; 2) to identify current gaps and barriers that influence the development and delivery of formal palliative care programs within these two care homes; and 3) to determine a list of priorities for change at the organizational level in efforts to make the LTC homes more successful during the development and delivery their own formalized palliative care programs.
Data used for this analysis were gathered in two northern Ontario homes during 2009-2010. Several types of data were analyzed to assess the current resources and functions to determine whether they were enablers, barriers, or gaps to the development and delivery of formal palliative care programs. The data analyzed included interview and focus group data that was collected from LTC home staff of different disciplines and roles, six types of survey data that were collected from LTC staff, as well as a document review of all the in-home policies specific to the LTC homes.
The result of this research has identified priority areas for change for the LTC homes to facilitate their development of formalized palliative care program and ensure that the programs that they create can be sustained and successful. Consistent with the methodological approach of Participatory Action Research, the methodology of the five-year project, these findings will be offered to the managers of the LTC homes for their review and consideration to guide organizational change.
