Research, recruitment and observational data collection in care homes: lessons from the PACE study

Moore, Danni Collingridge; Payne, Sheila; Block, Lieve Van den; Koppel, Maud ten; Szczerbińska, Katarzyna; Froggatt, Katherine

doi:10.1186/s13104-019-4543-2

Cited by 27 publications

(22 citation statements)

References 15 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…The data used in this analysis are from a cross-sectional, mortality follow back survey of deceased residents; the PACE study [35]. The PACE study was conducted in a sample created, where possible, using national lists of LTCFs in Belgium, England, Finland, Italy, the Netherlands and Poland, recruited using a proportionally stratified random sampling framework [36].…”

Section: Study Design and Settingmentioning

confidence: 99%

Associations between Length of Stay in Long Term Care Facilities and End of Life Care. Analysis of the PACE Cross-Sectional Study

Moore

Payne

Keegan

et al. 2020

IJERPH

Self Cite

View full text Add to dashboard Cite

Long term care facilities (LTCFs) are increasingly a place of care at end of life in Europe. Longer residence in an LTCF prior to death has been associated with higher indicators of end of life care; however, the relationship has not been fully explored. The purpose of this analysis is to explore associations between length of stay and end of life care. The analysis used data collected in the Palliative Care for Older People in care and nursing homes in Europe (PACE) study, a cross-sectional mortality follow-back survey of LTCF residents who died within a retrospective 3-month period, conducted in Belgium, England, Finland, Italy, the Netherlands and Poland. Primary outcomes were quality of care in the last month of life, comfort in the last week of life, contact with health services in the last month of life, presence of advance directives and consensus in care. Longer lengths of stay were associated with higher scores of quality of care in the last month of life and comfort in the last week of life. Longer stay residents were more likely to have advance directives in place and have a lasting power of attorney for personal welfare. Further research is needed to explore the underlying reasons for this trend, and how good quality end of life care can be provided to all LTCF residents.Ensuring LTCF residents approaching end of life receive appropriate care is challenging; residents may be frail, with multiple, complex care needs, and may be unable to either establish or communicate their preferences at end of life. Long term care facilities are often staffed by a combination of registered, qualified nurses and care assistants, who may have limited knowledge of end of life care for older adults and limited access to specialist services to support end of life care [7]. In addition, LTCF managers and their staff may lack clarity in defining and identifying end of life, or their role or responsibility in providing subsequent care within the facility [8]. In many European countries, end of life care in LTCFs in not well supported at a national level; in a review of 29 countries only eight had national policies which specifically addressed end of life care in LTCFs [9].Palliative care is defined as "an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual" [10]. The term "end of life care" is often used synonymously with palliative care in the UK, and refers to "an extended period of 1 to 2 years during which the patient/family and health professionals become aware of the life-limiting nature of their illness" [11]. Previous studies have found that the adoption of a palliative care approach in LTCFs led to a reduction in deaths outside the LTCF [12], an increase in the numbers of completed advance directives [13], improvements in end-of-life communication betw...

show abstract

Section: Study Design and Settingmentioning

confidence: 99%

Associations between Length of Stay in Long Term Care Facilities and End of Life Care. Analysis of the PACE Cross-Sectional Study

Moore

Payne

Keegan

et al. 2020

IJERPH

Self Cite

View full text Add to dashboard Cite

show abstract

“…These challenges are also present in countries with similar aged care systems to Australia. The Palliative Care for Older People in care and nursing homes in Europe (PACE) research program was conducted across six countries, which included the UK, the Netherlands, Belgium, Finland, Poland and Italy 7 . The study reported additional challenges with recruiting and conducting research in the UK compared to the other countries.…”

Section: Introductionmentioning

confidence: 99%

The challenges facing residential aged care homes to participate in quality food and nutrition research

Cave

Abbey

Capra

2023

J Human Nutrition Diet

View full text Add to dashboard Cite

Background There is a clear need for food and nutrition research to lead to pragmatic and sustainable solutions to the ongoing problems in residential aged care, particularly within foodservices. The present study aimed to identify systemic challenges for residential aged care homes in Australia to participate in quality food and nutrition research, using a complexity science lens. Methods Qualitative data from three studies in residential aged care were gathered, which included 28 participants across 21 aged care homes. Qualitative data consisted of in‐depth interviews, field notes and email communications with aged care staff. Thematic analysis was undertaken using both inductive and deductive approaches. Results Four themes were identified: (1) complex staffing issues deter or impede participation in research; (2) external pressure on the aged care system leads to research not being a priority; (3) funding issues are variable and pose a barrier for some aged care homes; and (4) research processes and requirements can lead to biased samples. Conclusions Several challenges to undertaking quality empirical research in residential aged care in Australia were identified. Research needs to be part of usual business, similar to hospitals, and operate independently of staffing and funding issues. Issues within foodservices are system issues and there is a need for quality empirical research to determine solutions.

show abstract

“…To date, research in care homes has enhanced understanding in multiple areas including end of life care (Amador et al , 2014; Goodman et al , 2015; Collingridge Moore et al , 2019), care home cultures (DeForge et al , 2011; Killett et al , 2016; McCormack et al , 2012), use of monitoring technologies (Hall et al , 2017) and residents’ experiences of mealtimes (Watkins et al , 2017). However, a review of care home research concluded that the research base for improvements in the lives of care-home residents remains underdeveloped (NIHR, 2017).…”

mentioning

confidence: 99%

“…Overall, there is a need for reflexivity in care home research (Luff et al , 2015; Collingridge Moore et al , 2019). Hall et al (2009) advocate patience and extra time to overcome challenges in gaining consent from residents and ensuring privacy during interviews within care-home settings.…”

mentioning

confidence: 99%

“Acting ethically is down to you” applying ethical protocols in qualitative fieldwork in care homes

Backhouse

Daly

2021

QAOA

View full text Add to dashboard Cite

Purpose Research ethics committees (RECs) and ethical standards govern research. To conduct research involving participants, researchers must first gain a favourable opinion on their protocol from a REC. This paper aims to promote researcher reflexivity and openness about applying agreed ethical protocols in practice. Design/methodology/approach Using examples from qualitative fieldwork in two care home studies, the authors critically reflect on the issues encountered when applying ethics committee agreed protocols in real-world situations. Findings Three areas of research practice are reflected on given as follows: recruitment and consent; approach to observations; and research processes, shared spaces and access to data. The interface between researcher and participant did not always mirror textbook scenarios. Ultimately, this left researchers accountable for taking ethically acceptable actions while conducting research. Originality/value Drawing on research experiences in care homes, the authors consider the reliance on the researcher to be authentic and morally driven over and above formal ethical approvals. The authors conclude that the researcher is the bridging agent between ethical protocols and ethical practice in the field. As such, researchers need to be open and reflexive about their practices in fieldwork.

show abstract

Research, recruitment and observational data collection in care homes: lessons from the PACE study

Cited by 27 publications

References 15 publications

Associations between Length of Stay in Long Term Care Facilities and End of Life Care. Analysis of the PACE Cross-Sectional Study

Associations between Length of Stay in Long Term Care Facilities and End of Life Care. Analysis of the PACE Cross-Sectional Study

The challenges facing residential aged care homes to participate in quality food and nutrition research

“Acting ethically is down to you” applying ethical protocols in qualitative fieldwork in care homes

Contact Info

Product

Resources

About