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.

View publication


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).

View publication (PDF)


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.

View publication (PDF)


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.

View publication (PDF)


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.

View publication (PDF)


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.

View publication (PDF)


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.

View publication (PDF)


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.

View publication (PDF)


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.

View publication (PDF)

website design and development by korkoladesign

Last modified June 23, 2017
Lakehead University, 955 Oliver Road
Thunder Bay, ON P7B 5E1 Canada
tel: (807) 766-7271, fax: (807) 766-7222