scholarly journals Involvement of people with dementia in making decisions about their lives: a qualitative study that appraises shared decision-making concerning daycare

BMJ Open ◽  
2017 ◽  
Vol 7 (11) ◽  
pp. e018337 ◽  
Author(s):  
Leontine Groen-van de Ven ◽  
Carolien Smits ◽  
Fuusje de Graaff ◽  
Marijke Span ◽  
Jan Eefsting ◽  
...  

ObjectiveTo explore how people with dementia, their informal caregivers and their professionals participate in decision making about daycare and to develop a typology of participation trajectories.DesignA qualitative study with a prospective, multiperspective design, based on 244 semistructured interviews, conducted during three interview rounds over the course of a year. Analysis was by means of content analysis and typology construction.SettingCommunity settings and nursing homes in the Netherlands.Participants19 people with dementia, 36 of their informal caregivers and 38 of their professionals (including nurses, daycare employees and case managers).ResultsThe participants’ responses related to three critical points in the decision-making trajectory about daycare: (1) the initial positive or negative expectations of daycare; (2) negotiation about trying out daycare by promoting, resisting or attuning to others; and (3) trying daycare, which resulted in positive or negative reactions from people with dementia and led to a decision. The ways in which care networks proceeded through these three critical points resulted in a typology of participation trajectories, including (1) working together positively toward daycare, (2) bringing conflicting perspectives together toward trying daycare and (3) not reaching commitment to try daycare.ConclusionShared decision making with people with dementia is possible and requires and adapted process of decision making. Our results show that initial preferences based on information alone may change when people with dementia experience daycare. It is important to have a try-out period so that people with dementia can experience daycare without having to decide whether to continue it. Whereas shared decision making in general aims at moving from initial preferences to informed preferences, professionals should focus more on moving from initial preferences to experienced preferences for people with dementia. Professionals can play a crucial role in facilitating the possibilities for a try-out period.

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Kari-Anne Hoel ◽  
Anne Marie Mork Rokstad ◽  
Ingvild Hjorth Feiring ◽  
Bjørn Lichtwarck ◽  
Geir Selbæk ◽  
...  

Abstract Background Dementia is one of the main causes of disability and dependence in older people, and people with dementia need comprehensive healthcare services, preferably in their own homes. A well-organized home care service designed for people with dementia is necessary to meet their needs for health- and social care. Therefore, it is important to gain knowledge about how people with dementia experience the home care service and if the service responds to their wishes and needs. The aim of this study was to explore the experience of home care services among people with dementia, to understand the continuity in services, how the service was adapted to people with dementia, and how the patient experienced person-centered care and shared decision-making. Methods We used a qualitative, exploratory design based on a phenomenological-hermeneutic approach and performed individual in-depth interviews with persons with dementia. A convenience sample of 12 persons with moderate to severe degrees of dementia from four Norwegian municipalities participated in the study. The interviews were conducted in February 2019. Results The findings identified that the participants appreciated the possibility to stay safely in their own homes and mostly experienced good support from staff. They expressed various views and understanding of the service and experienced limited opportunities for user involvement and individualized, tailored service. The overall theme summarizing the findings was: “It is difficult for people with dementia to understand and influence home care services, but the services facilitate the possibility to stay at home and feel safe with support from staff.” Conclusion The participants did not fully understand the organization of the care and support they received from the home care services, but they adapted to the service without asking for changes based on their needs or desires. Although person-centered care is recommended both nationally and internationally, the participants experienced little inclusion in defining the service they received, and it was perceived as unclear how they could participate in shared decision-making.


2021 ◽  
Author(s):  
Veena Graff ◽  
Justin T. Clapp ◽  
Sarah J. Heins ◽  
Jamison J. Chung ◽  
Madhavi Muralidharan ◽  
...  

Background Calls to better involve patients in decisions about anesthesia—e.g., through shared decision-making—are intensifying. However, several features of anesthesia consultation make it unclear how patients should participate in decisions. Evaluating the feasibility and desirability of carrying out shared decision-making in anesthesia requires better understanding of preoperative conversations. The objective of this qualitative study was to characterize how preoperative consultations for primary knee arthroplasty arrived at decisions about primary anesthesia. Methods This focused ethnography was performed at a U.S. academic medical center. The authors audio-recorded consultations of 36 primary knee arthroplasty patients with eight anesthesiologists. Patients and anesthesiologists also participated in semi-structured interviews. Consultation and interview transcripts were coded in an iterative process to develop an explanation of how anesthesiologists and patients made decisions about primary anesthesia. Results The authors found variation across accounts of anesthesiologists and patients as to whether the consultation was a collaborative decision-making scenario or simply meant to inform patients. Consultations displayed a number of decision-making patterns, from the anesthesiologist not disclosing options to the anesthesiologist strictly adhering to a position of equipoise; however, most consultations fell between these poles, with the anesthesiologist presenting options, recommending one, and persuading hesitant patients to accept it. Anesthesiologists made patients feel more comfortable with their proposed approach through extensive comparisons to more familiar experiences. Conclusions Anesthesia consultations are multifaceted encounters that serve several functions. In some cases, the involvement of patients in determining the anesthetic approach might not be the most important of these functions. Broad consideration should be given to both the applicability and feasibility of shared decision-making in anesthesia consultation. The potential benefits of interventions designed to enhance patient involvement in decision-making should be weighed against their potential to pull anesthesiologists’ attention away from important humanistic aspects of communication such as decreasing patients’ anxiety. Editor’s Perspective What We Already Know about This Topic What This Article Tells Us That Is New


2019 ◽  
Vol 102 (10) ◽  
pp. 1774-1785 ◽  
Author(s):  
Natalie Joseph-Williams ◽  
Denitza Williams ◽  
Fiona Wood ◽  
Amy Lloyd ◽  
Katherine Brain ◽  
...  

BMJ Open ◽  
2019 ◽  
Vol 9 (10) ◽  
pp. e029090 ◽  
Author(s):  
Jeanette Finderup ◽  
Jens Dam Jensen ◽  
Kirsten Lomborg

ObjectiveTo evaluate the ‘Shared Decision-making and Dialysis Choice’ (SDM-DC) intervention with regard to patients’ experience and involvement.DesignSemistructured individual interviews and systematic text condensation for data analysis.SettingThe SDM-DC intervention was implemented and evaluated at four different hospitals in Denmark.ParticipantsA total of 348 patients had received the SDM-DC intervention, and of these 29 patients were interviewed.InterventionsSDM-DC was designed for patients facing a choice of dialysis modality. The available modalities were haemodialysis and peritoneal dialysis, either performed by patients on their own or with help from a healthcare professional. The intervention was tailored to individual patients and consisted of three meetings with a dialysis coordinator who introduced a patient decision aid named ‘Dialysis Choice’ to the patient.FindingsThe following were the four main findings: the decision was experienced as being the patient’s own; the meetings contributed to the decision process; ‘Dialysis Choice’ contributed to the decision process; and the decision process was experienced as being iterative.ConclusionsThe patients experienced SDM-DC as involving them in their choice of dialysis modality. Due to the iterative properties of the decision-making process, a shared decision-making intervention for dialysis choice has to be adapted to the needs of individual patients. The active mechanisms of the meetings with the dialysis coordinator were (1) questions to and from the patient, and (2) the dialysis coordinator providing accurate information about the options. The overview of options and the value clarification tool in the decision aid were particularly helpful in establishing a decision-making process based on informed preferences.


2014 ◽  
Vol 97 (2) ◽  
pp. 216-222 ◽  
Author(s):  
Eirik H. Ofstad ◽  
Jan C. Frich ◽  
Edvin Schei ◽  
Richard M. Frankel ◽  
Pål Gulbrandsen

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