Care Provider Perspectives on End-Of-Life Care in Long-Term-Care Homes: Implications for Whole-Person and Palliative Care

Sims‐Gould, Joanie; Wiersma, Elaine; Arseneau, Lise; Kelley, Mary Lou; Kozak, Jean; Habjan, Sonja; MacLean, Michael

doi:10.1177/082585971002600208

Cited by 30 publications

(41 citation statements)

References 11 publications

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“…This indicates the need for quality improvement because early discussion of goals of care is a best practice in providing EOLC to elderly people with serious illness [91, 92]. The overall QPC-LTC research identified that most LTC staff were not comfortable having advance care planning and EOL conversations with residents and families [27, 28, 30]. …”

Section: Discussionmentioning

confidence: 99%

Measuring Family Members’ Satisfaction with End-of-Life Care in Long-Term Care: Adaptation of the CANHELP Lite Questionnaire

Nadin

Miandad

Kelley

et al. 2017

BioMed Research International

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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.

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Section: Discussionmentioning

confidence: 99%

Measuring Family Members’ Satisfaction with End-of-Life Care in Long-Term Care: Adaptation of the CANHELP Lite Questionnaire

Nadin

Miandad

Kelley

et al. 2017

BioMed Research International

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“…Data were mostly derived from care homes, hospitals, hospice care facilities, Specialists PC service, general practices and residential care homes (See supplementary file online). Out of all the studies, 29 derived data from healthcare professionals/providers [30-38, 40-53, 55-57, 59, 60, 62], 11 from managers/directors of care facilities [34-36, 43, 44, 46, 47, 52, 57, 60, 61], nine studies from carers/caregivers [29,38,42,45,54,[56][57][58][59], one study from the patient's perspective [54] and seven focused on the commissioner's and policy expert's perspectives [35,36,39,43,44,46,56]. See also barriers to provision of PC from different stakeholders' perspectives in the online supplementary file for further details.…”

Section: Country Setting and Participantsmentioning

confidence: 99%

“…Constraints. (4) [32,35,41,57] Dementia is not considered worthy of PC [55]. Lack of consistency at workplace [43].…”

Section: Timementioning

confidence: 99%

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Factors influencing palliative care in advanced dementia: a systematic review

Mataqi

Aslanpour

2019

BMJ Support Palliat Care

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Background: Dementia is a progressive neurodegenerative life-limiting disease. The international literature indicates that patients with advanced dementia may benefit from palliative care provided during the end of life phase. However, evidence indicates that currently many fail to access such provision despite the increased recognition of their palliative needs. Aim: To investigate the factors influencing provision of palliative care services for people with advanced dementia. Method: A systematic review of mixed method studies written in English was undertaken. 11 electronic databases including Embase, Medline, PubMed, CINHAL and Scopus from 2008 to 2018 were searched.Narrative synthesis and content analysis were used to analyse and synthesise the data. Key findings:In total, 34 studies were included. 25 studies providing qualitative data, 6 providing quantitative data and 3 mixed methods studies. The findings identified organisational, healthcare professionals and patients related barriers and facilitators in provision of palliative care for people with advanced dementia from perspective of stakeholders across different care settings. The most commonly reported barriers are lack of skills and training opportunities of the staff specific to palliative care in dementia, lack of awareness that dementia is a terminal illness and a palliative condition, pain and symptoms assessment/management difficulties, discontinuity of care for patients with dementia and lack of co-ordination across care settings, difficulty communicating with the patient and the lack of advance care planning. Conclusions: Even though the provision of palliative care was empirically recognised as a care step in the management of dementia, there are barriers that hinder access of dementia patients to appropriate facilities. With dementia prevalence rising and no cure on the horizon, it is crucial that health and social care regulatory bodies integrate a palliative approach into their care using the identified facilitators to achieve optimal and effective palliative care in this population.

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“…Literature reviews have shown a considerable need for palliative care in these settings, including the need for improved symptom management[2-4] and addressing psychosocial and spiritual needs [3,5]. There are, however, barriers to providing palliative care in care homes, for example: staff shortages and turnover; lack of time and knowledge of palliative care among staff; shortage of equipment; lack of support from primary care; and poor communication among staff, and between staff and residents and their families [6-8]. Some of these are likely to be encountered across different countries, however, since the systems of care and support for residents are different (e.g.…”

Section: Introductionmentioning

confidence: 99%

Implementing a quality improvement programme in palliative care in care homes: a qualitative study

et al. 2011

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BackgroundAn increasing number of older people reach the end of life in care homes. The aim of this study is to explore the perceived benefits of, and barriers to, implementation of the Gold Standards Framework for Care Homes (GSFCH), a quality improvement programme in palliative care.MethodsNine care homes involved in the GSFCH took part. We conducted semi-structured interviews with nine care home managers, eight nurses, nine care assistants, eleven residents and seven of their family members. We used the Framework approach to qualitative analysis. The analysis was deductive based on the key tasks of the GSFCH, the 7Cs: communication, coordination, control of symptoms, continuity, continued learning, carer support, and care of the dying. This enabled us to consider benefits of, and barriers to, individual components of the programme, as well as of the programme as a whole.ResultsPerceived benefits of the GSFCH included: improved symptom control and team communication; finding helpful external support and expertise; increasing staff confidence; fostering residents' choice; and boosting the reputation of the home. Perceived barriers included: increased paperwork; lack of knowledge and understanding of end of life care; costs; and gaining the cooperation of GPs. Many of the tools and tasks in the GSFCH focus on improving communication. Participants described effective communication within the homes, and with external providers such as general practitioners and specialists in palliative care. However, many had experienced problems with general practitioners. Although staff described the benefits of supportive care registers, coding predicted stage of illness and advance care planning, which included improved communication, some felt the need for more experience of using these, and there were concerns about discussing death.ConclusionsMost of the barriers described by participants are relevant to other interventions to improve end of life care in care homes. There is a need to investigate the impact of quality improvement programmes in care homes, such as the GSFCH, on a wider range of outcomes for residents and their families, and to monitor the sustainability of any resulting improvements. It is also important to explore the impact of the different components of these complex interventions.

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Care Provider Perspectives on End-Of-Life Care in Long-Term-Care Homes: Implications for Whole-Person and Palliative Care

Cited by 30 publications

References 11 publications

Measuring Family Members’ Satisfaction with End-of-Life Care in Long-Term Care: Adaptation of the CANHELP Lite Questionnaire

Measuring Family Members’ Satisfaction with End-of-Life Care in Long-Term Care: Adaptation of the CANHELP Lite Questionnaire

Factors influencing palliative care in advanced dementia: a systematic review

Implementing a quality improvement programme in palliative care in care homes: a qualitative study

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