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‘It’s not really our thing’: lessons in engaging care homes in palliative care research

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‘It’s not really our thing’: lessons in engaging care homes in palliative care research. / Collingridge Moore, Danielle ; Froggatt, Katherine; Sowerby, Elley et al.
2016. Poster session presented at 11th Palliative Care Congress, Glasgow, United Kingdom.

Research output: Contribution to conference - Without ISBN/ISSN Posterpeer-review

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@conference{cc977bed440c473ba618041e803fb12e,
title = "{\textquoteleft}It{\textquoteright}s not really our thing{\textquoteright}: lessons in engaging care homes in palliative care research",
abstract = "Background: In England and Wales there are just under 400,000 older adults residing in care homes at any one time. Despite this, care home residents are often excluded from epidemiological studies and little routine data are collected within care homes. Data on palliative care provided by care homes is reported to the Care Quality Commission, but the quality of care is often locally determined. There is ongoing research in this area aimed at collecting representative, internationally comparable data, such as the PACE study. Aims: To discuss the challenges encountered in engaging and recruiting care homes across England in the PACE study, a retrospective, cross sectional survey of deaths over three months. The study collected questionnaire data from care home staff, general practitioners and relatives of care home residents on their experiences of palliative care. It aimed to include 200 deceased residents in fifty care homes over a one-year period. Methods: The research team reviewed the barriers and challenges encountered throughout the research process, including developing a representative sampling framework, obtaining ethical approvals, advertising the study and recruiting care homes.Results: There is a lack of clarity regarding where care homes are located within the scope of ethical approval bodies. Recruitment through random sampling was found to be less effective compared to recruitment through ENRICH networks. Barriers to care home participation included concerns regarding sharing information, fear of opening up to potential criticism, lack of resources and misunderstandings regarding confidentiality. Conclusions: The development of care home networks and informal contacts can improve the rate and extent of research involvement. Whilst representativeness can be attained, random samples and ensuring a rigorous sample through these methods of recruitment remains a challenge.",
author = "{Collingridge Moore}, Danielle and Katherine Froggatt and Elley Sowerby and Sheila Payne",
year = "2016",
month = mar,
day = "9",
language = "English",
note = "11th Palliative Care Congress ; Conference date: 09-03-2016 Through 11-03-2016",

}

RIS

TY - CONF

T1 - ‘It’s not really our thing’

T2 - 11th Palliative Care Congress

AU - Collingridge Moore, Danielle

AU - Froggatt, Katherine

AU - Sowerby, Elley

AU - Payne, Sheila

PY - 2016/3/9

Y1 - 2016/3/9

N2 - Background: In England and Wales there are just under 400,000 older adults residing in care homes at any one time. Despite this, care home residents are often excluded from epidemiological studies and little routine data are collected within care homes. Data on palliative care provided by care homes is reported to the Care Quality Commission, but the quality of care is often locally determined. There is ongoing research in this area aimed at collecting representative, internationally comparable data, such as the PACE study. Aims: To discuss the challenges encountered in engaging and recruiting care homes across England in the PACE study, a retrospective, cross sectional survey of deaths over three months. The study collected questionnaire data from care home staff, general practitioners and relatives of care home residents on their experiences of palliative care. It aimed to include 200 deceased residents in fifty care homes over a one-year period. Methods: The research team reviewed the barriers and challenges encountered throughout the research process, including developing a representative sampling framework, obtaining ethical approvals, advertising the study and recruiting care homes.Results: There is a lack of clarity regarding where care homes are located within the scope of ethical approval bodies. Recruitment through random sampling was found to be less effective compared to recruitment through ENRICH networks. Barriers to care home participation included concerns regarding sharing information, fear of opening up to potential criticism, lack of resources and misunderstandings regarding confidentiality. Conclusions: The development of care home networks and informal contacts can improve the rate and extent of research involvement. Whilst representativeness can be attained, random samples and ensuring a rigorous sample through these methods of recruitment remains a challenge.

AB - Background: In England and Wales there are just under 400,000 older adults residing in care homes at any one time. Despite this, care home residents are often excluded from epidemiological studies and little routine data are collected within care homes. Data on palliative care provided by care homes is reported to the Care Quality Commission, but the quality of care is often locally determined. There is ongoing research in this area aimed at collecting representative, internationally comparable data, such as the PACE study. Aims: To discuss the challenges encountered in engaging and recruiting care homes across England in the PACE study, a retrospective, cross sectional survey of deaths over three months. The study collected questionnaire data from care home staff, general practitioners and relatives of care home residents on their experiences of palliative care. It aimed to include 200 deceased residents in fifty care homes over a one-year period. Methods: The research team reviewed the barriers and challenges encountered throughout the research process, including developing a representative sampling framework, obtaining ethical approvals, advertising the study and recruiting care homes.Results: There is a lack of clarity regarding where care homes are located within the scope of ethical approval bodies. Recruitment through random sampling was found to be less effective compared to recruitment through ENRICH networks. Barriers to care home participation included concerns regarding sharing information, fear of opening up to potential criticism, lack of resources and misunderstandings regarding confidentiality. Conclusions: The development of care home networks and informal contacts can improve the rate and extent of research involvement. Whilst representativeness can be attained, random samples and ensuring a rigorous sample through these methods of recruitment remains a challenge.

M3 - Poster

Y2 - 9 March 2016 through 11 March 2016

ER -