Motivations of family advisors in engaging in research to improve a palliative approach to care for persons living with dementia: an interpretive descriptive study.
Dementia
End-of-life care
Long-term care
Palliative care
Patient oriented research
Journal
Research involvement and engagement
ISSN: 2056-7529
Titre abrégé: Res Involv Engagem
Pays: England
ID NLM: 101708164
Informations de publication
Date de publication:
06 Sep 2024
06 Sep 2024
Historique:
received:
15
03
2024
accepted:
10
08
2024
medline:
7
9
2024
pubmed:
7
9
2024
entrez:
6
9
2024
Statut:
epublish
Résumé
A Strategic Guiding Council (SGC) was created within a Family Carer Decisions Support study, to engage family carers of persons with advanced dementia as advisors to inform the design and implementation of the study. The SGC consists of an international group of family advisors from Canada, the Republic of Ireland, the United Kingdom, the Netherlands, and the Czech Republic. There are limited studies that have explored the integration of Patient and Public Involvement (PPI) in dementia research, end-of-life care and long-term care. Therefore, this study explores PPI engagement in health research with family carers to understand further their interest in being involved in the SCG within the FCDS intervention which is focused on supporting caregivers to make decisions about end-of-life care for residents with advanced dementia. This study utilized an interpretive descriptive design and explored the motivations of ten family advisors from Canada, the Republic of Ireland, the United Kingdom, and the Netherlands in being part of the SGC. Semi-structured interviews were conducted by phone or videoconferencing and were recorded, transcribed, and analyzed using thematic analysis. Three themes generated from the findings of the study were (1) engaging in reciprocal learning; (2) using lived experience to support other family carers; and (3) creating a collective momentum for advocacy and change. Family carers motivations to being part of the SCG was driven by their intent to help carers navigate the health system and to create a psychosocial support system for other carers experiencing end-of-life with their loved ones. Being part of the SCG provided a benefit to family carers which provided a venue for them to contribute meaningful information from their experience, learn from other health professionals, research and other advisors and an avenue for advocacy work to improve access to end-of-life care supports through education. To our knowledge, this is the first study that explores the motivations of an international group of family advisors' engagement in health research to promote integration of a palliative approach to dementia care in long-term care homes. This study further contributes to the literature from an international perspective the importance of PPI in research. Further research is warranted that explores PPI in research to improve access to end-of-life supports. Patient and public involvement (PPI) in research has been growing worldwide and ensures that research conducted is relevant to the needs of patients. Within the Family Carer Decisions Support study, we created a Strategic Guiding Council (SGC) to engage family carers of persons with advanced dementia as advisors to improve access to a palliative approach to care. The SGC includes family advisors from Canada, the Republic of Ireland, the United Kingdom, the Netherlands, Italy and the Czech Republic. The goal of the strategy was to engage with family advisors in research activities to improve access to a palliative approach and quality of care provided to people with dementia receiving end-of-life care. Including patients and family in research is extremely important, therefore our aim in this study was to explore family advisors’ motivations to engaging in the SGC. Family advisors reported encountering challenges with navigating the health system with end-of-life care and they chose to participate in the SGC to support other carers who are experiencing a similar situation. Being part of the SGC also provided the family advisors with an avenue to advocate on the importance of improving access to end-of-lifesupports and the opportunity to learn from other advisors, health professionals and researchers.
Sections du résumé
BACKGROUND
BACKGROUND
A Strategic Guiding Council (SGC) was created within a Family Carer Decisions Support study, to engage family carers of persons with advanced dementia as advisors to inform the design and implementation of the study. The SGC consists of an international group of family advisors from Canada, the Republic of Ireland, the United Kingdom, the Netherlands, and the Czech Republic. There are limited studies that have explored the integration of Patient and Public Involvement (PPI) in dementia research, end-of-life care and long-term care. Therefore, this study explores PPI engagement in health research with family carers to understand further their interest in being involved in the SCG within the FCDS intervention which is focused on supporting caregivers to make decisions about end-of-life care for residents with advanced dementia.
METHODS
METHODS
This study utilized an interpretive descriptive design and explored the motivations of ten family advisors from Canada, the Republic of Ireland, the United Kingdom, and the Netherlands in being part of the SGC. Semi-structured interviews were conducted by phone or videoconferencing and were recorded, transcribed, and analyzed using thematic analysis.
RESULTS
RESULTS
Three themes generated from the findings of the study were (1) engaging in reciprocal learning; (2) using lived experience to support other family carers; and (3) creating a collective momentum for advocacy and change.
CONCLUSIONS
CONCLUSIONS
Family carers motivations to being part of the SCG was driven by their intent to help carers navigate the health system and to create a psychosocial support system for other carers experiencing end-of-life with their loved ones. Being part of the SCG provided a benefit to family carers which provided a venue for them to contribute meaningful information from their experience, learn from other health professionals, research and other advisors and an avenue for advocacy work to improve access to end-of-life care supports through education. To our knowledge, this is the first study that explores the motivations of an international group of family advisors' engagement in health research to promote integration of a palliative approach to dementia care in long-term care homes. This study further contributes to the literature from an international perspective the importance of PPI in research. Further research is warranted that explores PPI in research to improve access to end-of-life supports.
Patient and public involvement (PPI) in research has been growing worldwide and ensures that research conducted is relevant to the needs of patients. Within the Family Carer Decisions Support study, we created a Strategic Guiding Council (SGC) to engage family carers of persons with advanced dementia as advisors to improve access to a palliative approach to care. The SGC includes family advisors from Canada, the Republic of Ireland, the United Kingdom, the Netherlands, Italy and the Czech Republic. The goal of the strategy was to engage with family advisors in research activities to improve access to a palliative approach and quality of care provided to people with dementia receiving end-of-life care. Including patients and family in research is extremely important, therefore our aim in this study was to explore family advisors’ motivations to engaging in the SGC. Family advisors reported encountering challenges with navigating the health system with end-of-life care and they chose to participate in the SGC to support other carers who are experiencing a similar situation. Being part of the SGC also provided the family advisors with an avenue to advocate on the importance of improving access to end-of-lifesupports and the opportunity to learn from other advisors, health professionals and researchers.
Autres résumés
Type: plain-language-summary
(eng)
Patient and public involvement (PPI) in research has been growing worldwide and ensures that research conducted is relevant to the needs of patients. Within the Family Carer Decisions Support study, we created a Strategic Guiding Council (SGC) to engage family carers of persons with advanced dementia as advisors to improve access to a palliative approach to care. The SGC includes family advisors from Canada, the Republic of Ireland, the United Kingdom, the Netherlands, Italy and the Czech Republic. The goal of the strategy was to engage with family advisors in research activities to improve access to a palliative approach and quality of care provided to people with dementia receiving end-of-life care. Including patients and family in research is extremely important, therefore our aim in this study was to explore family advisors’ motivations to engaging in the SGC. Family advisors reported encountering challenges with navigating the health system with end-of-life care and they chose to participate in the SGC to support other carers who are experiencing a similar situation. Being part of the SGC also provided the family advisors with an avenue to advocate on the importance of improving access to end-of-lifesupports and the opportunity to learn from other advisors, health professionals and researchers.
Identifiants
pubmed: 39243054
doi: 10.1186/s40900-024-00623-w
pii: 10.1186/s40900-024-00623-w
doi:
Types de publication
Journal Article
Langues
eng
Pagination
94Subventions
Organisme : CIHR
ID : 161462
Pays : Canada
Informations de copyright
© 2024. The Author(s).
Références
L’Esperance A, O’Brien N, Gregoire A, Abelson J, Canfield C, Del Grande C, Dogba MJ, Fancott C, Levasseur MA, Loignon C, Majnemer A, Pomey MP, Rasiah J, Salsberg J, Santana M, Tremblay MC, Urquhart R, Boivin A. Developing a Canadian evaluation framework for patient and public engagement in research: a study protocol. Res Involv Engagem. 2021;7(1):10. https://doi.org/10.1186/s40900-021-00255-4 .
doi: 10.1186/s40900-021-00255-4
pubmed: 33632329
pmcid: 7905422
Burgers JS, van der Weijden T, Bischoff EA. Challenges of research on person-centered care in general practice: a scoping review. Front Med. 2021;8(669491). https://doi.org/10.3389/fmed.2021.669491 .
Burns KK, Bellows M, Eigenseher C, Gallivan J. Practical’ resources to support patient and family engagement in healthcare decisions: a scoping review. BMC Health Serv Res. 2014;14(175):1–15. https://doi.org/10.1186/1472-6963-14-175 .
doi: 10.1186/1472-6963-14-175
Holroyd-Leduc J, Resin J, Barwich D, Elliot J, Huras P, Legare F, Mahoney M, Maybee A, McNeil H, Pullman D, Sawatzky R, Stolee P. Giving voice to older adults living with frailty and their family caregivers: engagement of older adults living with frailty in research, health care decision making and in health policy. Res Involv Engagem. 2016;2(23):1–19. https://doi.org/10.1186/s40900-016-0038-7 .
doi: 10.1186/s40900-016-0038-7
Patrick K, Kebbe M, Aubin D. A home for patient-oriented research. CMAJ. 2018;190(20):E607. https://doi.org/10.1503/cmaj.180587 .
doi: 10.1503/cmaj.180587
pubmed: 29789284
pmcid: 5962390
South J, Fairfax P, Green E. Developing an assessment tool for evaluating community involvement. Health Expect. 2005;8(1):64–73. https://doi.org/10.1111/j.1369-7625.2004.00313.x .
doi: 10.1111/j.1369-7625.2004.00313.x
pubmed: 15713172
pmcid: 5060273
Canadian Institute of Health Research. Strategy for patient-oriented research. [internet]. https://cihr-irsc.gc.ca/e/41204.html (2022). Accessed 4 Jan 2022.
Loud F, Jain N, Thomas N. How to develop a patient and carer advisory group in a quality improvement study. J Ren Care. 2013;39(2):1–9. https://doi.org/10.1111/j.1755-6686.2013.12032 .
doi: 10.1111/j.1755-6686.2013.12032
Jun M, Manns B, Laupacis A, Manns L, Rehal B, Crowe S, Hemmelgarn BR. Assessing the extent to which current clinical research is consistent with patient priorities: a scoping review using a case study in patients on or nearing dialysis. Can J Kidney Health Dis. 2015;2(35). https://doi.org/10.1186/s40697-1015-0070-9 .
Fox S, FitzGerald C, Dening KH, Irving K, Kernohan WG, Treloar A, Oliver D, Guerin S, Timmons S. Better palliative care for people with a dementia: summary of interdisciplinary workshop highlighting current gaps and recommendations for future research. BMC Palliat Care. 2018;17(1):1–11. https://doi.org/10.1186/s12904-017-0221-0 .
doi: 10.1186/s12904-017-0221-0
Bethell J, Commisso E, Rostad HM, Puts M, Babineau J, Grinbergs-Saull A, Wighton MB, Hammell J, Doyle E, Nadeau S, McGilton KS. Patient engagement in research related to dementia: a scoping review. Dementia. 2018;17(8):944–74. https://doi.org/10.1177/1471301218789292 .
doi: 10.1177/1471301218789292
pubmed: 30373460
Bavelaar L, Visser M, Walshe C, Preston N, Kaasalainen S, Sussman T, Cornally N, Hartigan I, Loucka M, di Giulio P, Brazil K, Achterberg WP, van der Steen JT. The impact of the mySupport advance care planning intervention on family caregivers’ perceptions of decision-making and care for nursing home residents with dementia: pretest–post-test study in six countries. Age Ageing. 2023;52(3):1–9. https://doi.org/10.1093/ageing/afad027 .
doi: 10.1093/ageing/afad027
Harding AJ, Doherty J, Bavelaar L, Walshe C, Preston N, Kaasalainen S, Sussman T, van der Steen JT, Cornally N, Hartigan I, Louka M, Vlckova K, Di Giulio P, Gonella S, Brazil K. A family carer decision support intervention for people with advanced dementia residing in a nursing home: a study protocol for an international advance care planning intervention (mySupport study). BMC Geriatr. 2022;22(1):1–10. https://doi.org/10.1186/s12877-022-03533-2 .
doi: 10.1186/s12877-022-03533-2
Brazil K, Walshe C, Doherty J, Harding AE, Preston N, Bavelaar L, Cornally N, Di Giulio P, Gonella S, Hartigan I. Implementation of an advance care planning intervention in nursing homes: an international multiple case study. Gerontologist. 2024;gnae007. https://doi.org/10.1093/geront/gnae007 .
Vellani S, Maradiaga VR, Nicula M, Lucchese S, Kruizinga J, Sussman T, Kaasalainen S. Palliative approach to care education for multidisciplinary staff of long-term care homes: a pretest post-test study. Gerontol Geriatr Med. 2023;9:1–9. https://doi.org/10.1177/23337214231158470 .
doi: 10.1177/23337214231158470
Bavelaar L, McCann A, Cornally N, Hartigan I, Kaasalainen S, Vankova H, Di Giulio P, Volicer L, Arcand M, van der Steen JT, Brazil K. mySupport study group. Guidance for family about comfort care in dementia: a comparison of an educational booklet adopted in six jurisdictions over a 15 year timespan. BMC Palliat Care. 2022;21(1):76. https://doi.org/10.1186/s12904-022-00962-z .
doi: 10.1186/s12904-022-00962-z
pubmed: 35578219
pmcid: 9112535
Bavelaar L, Nicula M, Morris S, Kaasalainen S, Achterberg WP, Loucka M, Vlckova K, Thompson G, Cornally N, Hartigan I, Harding A, Preston NJ, Walshe C, Cousins E, Harrison-Dening K, Devries K, Brazil K, van der Steen JT. Developing Country-specific questions about end-of-life care for nursing home residents with Advanced Dementia using the nominal group technique with Family caregivers. Patient Educ Couns. 2022;105(4):965–73. https://doi.org/10.1016/j.pec.2021.07.031 .
doi: 10.1016/j.pec.2021.07.031
pubmed: 34376304
Yous ML, Connelly DM, Zhuang R, Hay ME, Garnett A, Hung L, Snobelen N, Gao H, Criferg K, Furlan-Craievich C, Snelgrove S. Perceptive responses and familiar staff facilitate meaningful engagement of older adults and family/care partners in long-term care home implementation science research during COVID-19. Patient Experience J. 2023;10(2):138.
doi: 10.35680/2372-0247.1790
Hung L, Berndt A, Wallsworth C, Horne N, Gregorio M. Involving patients and families in a social robot study. Patient Experience J. 2019;6(2):66–74. https://doi.org/10.35680/2372-0247.1362 .
doi: 10.35680/2372-0247.1362
Allard J, Ballesteros F, Anthony SJ, Dumez V, Hartell D, Knoll G, Wright L, Fortin MC. What does patient engagement mean for Canadian national transplant research program researchers? Res Involv Engagem. 2018;4(13). https://doi.org/10.1186/s40900-018-0096-0 .
Thorne S. Interpretive description: qualitative research for applied practice. 2nd ed. Routledge. Crossref;; 2016.
Robinson OC. Sampling in interview-based qualitative research: a theoretical and practical guide. Qual Res Psychol. 2014;11(1). https://doi.org/10.1080/14780887.2013.801543 .
Patton MQ. Qualitative research and evaluation methods. 4th ed. Washington, DC: Sage; 2015.
Canadian Institute of Health Research. Tri-council policy statement: Ethical conduct for research involving humans. [internet]. https://ethics.gc.ca/eng/documents/tcps2-2018-en-interactive-final.pdf (2018). Accessed 4 Jan 2022.
Kwon SC, Tandon SD, Islam N, Riley L, Trinh-Shevrin C. Applying a community-based participatory research framework to patient and family engagement in the development of patient-centered outcomes research and practice. Transl Behav Med. 2018;8(5):683–91. https://doi.org/10.1093/tbm/ibx026 .
doi: 10.1093/tbm/ibx026
pubmed: 30202926
Miah J, Parsons S, Lovell K, Starling B, Leroi I, Dawes P. Impact of involving people with dementia and their care partners in research: a qualitative study. BMJ Open. 2020;10(e039321). https://doi.org/10.1136/bmjopen-2020-039321 .
Shippee ND, Garces JP, Lopez GJ, Wang Z, Elraiyah TA, Nabhan M, Brito JP, Boehmer K, Hasan R, Firwana B, Erwin PJ, Montori VM, Murad MH. Patient and service user engagement in research: a systematic review and synthesized framework. Health Expect. 2013;18(5):1151–66. https://doi.org/10.1111/hex.12090 .
doi: 10.1111/hex.12090
pubmed: 23731468
pmcid: 5060820
Warner G, Baird LG, McCormack B, Urquhart R, Lawson B, Tschupruk C, Christian E, Weeks L, Kumanan K, Sampalli T. Engaging family caregivers and health system partners in exploring how multi-level contexts in primary care practices affect case management functions and outcomes of patients and family caregivers at end of life: a realist synthesis. BMC Palliat Care. 2021;20(114):1–30. https://doi.org/10.1186/s12904-021-00871-8 .
doi: 10.1186/s12904-021-00871-8
Cashin Z, Daley S, Hebditch M, Hughes L, Banerjee S. Involving people with dementia and their carers in dementia education for undergraduate healthcare professionals: a qualitative study of motivation to participate and experience. Int Psychogeriatr. 2019;31(6):869–76. https://doi.org/10.1017/S1041610218001357 .
doi: 10.1017/S1041610218001357
pubmed: 30520394
O’Keeffe S, Weitkamp K, Issacs D, Target M, Eatough V, Midgley N. Parents’ understanding and motivation to take part in a randomized controlled trial in the field of adolescent mental health: a qualitative study. Trials. 2020;21(952):1–13. https://doi.org/10.1186/s13063-020-04857-3 .
doi: 10.1186/s13063-020-04857-3
Brazil K, Kaasalainen S, McAiney C, Brink P, Kelly ML. Knowledge and perceived competence among nurses caring for the dying in long-term care homes. Int J Palliat Nurs. 2012;18(2):77–83. https://doi.org/10.12968/ijpn.2012.18.2.77 .
doi: 10.12968/ijpn.2012.18.2.77
pubmed: 22399045
Chen IH, Lin KY, Hu SH, Chuang YH, Long CO, Chang CC, Liu MF. Palliative care for advanced dementia: knowledge and attitudes of long-term care staff. J Clinc Nurs. 2018;3–4:848–58. https://doi.org/10.1111/jocn.14132 .
doi: 10.1111/jocn.14132
Luckett T, Luscombe G, Phillips J, Beattie E, Chenoweth L, Davidson PM, Goodall S, Pond D, Mitchell G, Agar M. (2021). Australian long-term care personnel’s knowledge and attitudes regarding palliative care for people with advanced dementia. Dementia. 2021; 20(2):427–443. https://doi.org/10.1177/1471301219886768
Bolt SR, van der Steen JT, Schols JM, Zwakhalen SM, Pieters S, Meijers JM. Nursing staffing needs in providing palliative care for people with dementia at home or in long-term care facilities: a scoping review. Int J Nurs Stud. 2019;96:143–52. https://doi.org/10.1016/j.ijnurstu.2018.12.011 .
doi: 10.1016/j.ijnurstu.2018.12.011
pubmed: 30928183
Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N, Brito JP, Boehmer K, Hasan R, Firwana B, Erwin P, Eton D, Sloan J, Montori V, Asi N, Dabrh AM, Murad MH. Patient engagement in research: a systematic review. BMC Health Serv Res. 2014;14(89):1–9. https://doi.org/10.1186/1472-6963-14-89 .
doi: 10.1186/1472-6963-14-89
Carter N, Bryant-Lukosius D, DiCenso A, Blythe J, Neville AJ. The use of triangulation in qualitative research. Oncol Nurs Forum. 2014;41(5):545–7. https://doi.org/10.1188/14.ONF.545-54 .
doi: 10.1188/14.ONF.545-54
pubmed: 25158659