Målet med detta arbete har varit att genom en litteratursammanställning av hur autonomi hos personer med demenssjukdom påverkas i omvårdnaden och möjliggöra verbalisering av problem som tidigare varit svåra att prata om.
Författarna till detta arbete hoppas att det går att dra lärdomar från de erfarenheter som avhandlats i denna studie och att dessa kan omsättas i praktiken samt
omvårdnaden av personer med demenssjukdom. Därtill önskar författarna att på särskilda boenden och ordinära boenden att lärdomarna kan hjälpa till att minska kunskapsluckan för allmänsjuksköterskor gällande autonomi vid vård av personer med demenssjukdom. Även om denna studie fokuserat på demenssjuka personer som vårdats i ordinärt boende eller på särskilt boende bör vissa kunskaper i denna studie kunna applicera i andra vårdkontexter och därmed kunna hjälpa
sjuksköterskor att beakta autonomi i vård av demenssjuka personer även där.
Vidare hoppas författarna att fler sjuksköterskor börjar se personerna bakom demenssjukdomen som unika individer, alla med sina egna livserfarenheter och personligheter. Författarna har förhoppningar om att detta arbete kan bidra till sjuksköterskors ökade förståelse för autonomin och integriteten hos personer med demenssjukdom, och således göra sjuksköterskorna bättre rustade för att erbjuda en personcentrerad vård till en växande patientgrupp i Sverige.
20
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BILAGA 1
Sökmall PubMed 210407
Sökning Nr # Sökord Filter Träffar
#1 "Nurses"[Mesh] 89950
#2 nurse* 426046
#3 "Nursing Staff"[Mesh] 67265
#4 nursing staff 104908
#5
Sökblock 1
“Nurse”
((("Nurses"[Mesh]) OR (nurse*)) OR ("Nursing Staff"[Mesh])) OR (nursing staff)
471198
#6 "Dementia"[Mesh] 172534
#7 dementia 224783
#8
Sökblock 2
“Dementia”
(dementia) OR ("Dementia"[Mesh]) 224783
#9 "Personal Autonomy"[Mesh] 17392
#10 autonomy 51118
#11 "Patient-Centered Care"[Mesh] 21280
#12 person centered care 17419
#13 patient centered care 36240
#14 Sökblock 3
“Autonomy”
(((("Personal Autonomy"[Mesh]) OR (autonomy)) OR ("Patient-Centered Care"[Mesh])) OR (person centered care)) OR (patient centered care)
90493
#15 "Life Change Events"[Mesh] 22938
#16 experience* 1138722
#17 "Qualitative Research"[Mesh] 61372
#18 qualitative research 190456
#19 "Interview" [Publication Type] 29609
#20 interview* 411865
#21 "Attitude"[Mesh] 592306
#22 attitude* 438714
#23 Sökblock 4
“Experience”
((((((("Life Change Events"[Mesh]) OR (experience*)) OR ("Qualitative Research"[Mesh])) OR (qualitative research)) OR ("Interview" [Publication Type])) OR (interview*)) OR ("Attitude"[Mesh])) OR (attitude*)
(((((("Nurses"[Mesh]) OR (nurse*)) OR ("Nursing Staff"[Mesh])) OR (nursing staff)) AND ((dementia) OR ("Dementia"[Mesh]))) AND ((((("Personal Autonomy"[Mesh]) OR (autonomy)) OR ("Patient-Centered Care"[Mesh])) OR (person centered care)) OR (patient centered care))) AND (((((((("Life Change Events"[Mesh]) OR (experience*)) OR ("Qualitative Research"[Mesh])) OR (qualitative research)) OR ("Interview" [Publication Type])) OR (interview*)) OR ("Attitude"[Mesh])) OR (attitude*))
331
24
BILAGA 2
Sökmall Cinahl 210407 Sökning Nr
“S”
Sökord Filter Träffar
S1 (MH "Practical Nurses") 5751
S2 Nurse* 535518
S3 (MH "Nursing Home Personnel") 4073
S4 nursing home personnel 4174
S5 Sökblock 1
“Nurse” S1 OR S2 OR S3 OR S4
538360
S6 (MH "Dementia+") 75751
S7 Dementia 67011
S8 Sökblock 2
“Dementia” S6 OR S7
90651
S9 (MH "Autonomy+") 20446
S10 autonomy 30873
S11 (MH "Patient Centered Care") 31738
S12 person centered care 16183
S13 Sökblock 3
“Autonomy” S9 OR S10 OR S11 OR S12
62323
S14 (MH "Life Experiences+") 44323
S15 experience* 463865
S16 (MH "Attitude+") 466692
S17 attitude* 358979
S18 interview* 336746
S19 (MH "Qualitative Studies+") 155796
S20 qualitative research 21280
S21 Sökblock 4
“Experience” S14 OR S15 OR S16 OR S17 OR S18 OR S19 OR S20
1079777
S23 Sökblock kombinerde
med AND S5 AND S8 AND S13 AND S21
Peer reviewed
265
25
BILAGA 3
Authors, Year, Title, Country
Aim Participants Method Results Quality
Aasgaard H S, Fagerström L, Landmark B,
The aim was to describe nurses’ experiences of providing care to home-dwelling dementia clients through HHC services after the training and reorganization of nursing analysis was used and structured with structured thematic analysis.
The findings are presented as a theme, The experience of doing a good job, and sub-themes: (1) time and familiarity, (2) on the client’s terms, and (3) being confident in the job.
High.
Chang E, Daly J, Johnson A, Harrison K,
Easterbrook S, Bidewell J, Stewart H, Noel M,
The current study aimed to expose the challenges for key professional providers of care for people with advanced dementia living in residential aged care facilities. A prediction was that the complex needs of the aged care resident with advanced dementia will be one of the challenges for the key professional carers.
12 Nurses among 24 participants.
5 focus groups and 20 individual interviews.
Semi-structured questions were used in group interviews and in the individual interviews.
The data attest to the complexity of caring for people with advanced dementia living in residential aged care facilities, and the associated challenges for key professional carers. The main areas of challenge identified were: knowledge and skills in the direct provision of care, knowledge relating to dementia as a disorder, and knowledge relating to palliation. Participants
emphasized the need for improvements in knowledge and skills, and the need for policy changes.
High.
26 Authors, Year, Title,
Country
Aim Participants Method Results Quality
Cooney A, O’shea E, 2019
The impact of life story work on person-centred care for people with dementia living in long-stay care settings in Ireland.
Ireland.
This paper aims to explore whether knowing the person’s life story enhances healthcare professionals’
understanding of the person with dementia and whether this
understanding impacts on the person’s care
11 Nurses and 12 Nurses aids.
Individual interviews.
Grounded theory, comparative analysis.
Engaging in life story work did ‘enhance staffs’ understanding of the person with dementia’. Staff came to know and
understand the person behind the dementia, his/her values, achievements, talents and interests. This understanding caused a shift in how they viewed the person; enabling them to see the person as unique, as
somebody who had laughed, cried, danced or raised a family. in nursing homes: how do physicians and nurses describe and justify their own practice? great challenge to nursing home staff in the issues of life-prolonging treatment, hydration, nutrition and hospitalisation to dying patents in end-of-life.
10 Nurses and 9 Doctors. Qualitative study design where material from interviews with
participants were studied.
Assessment of the patient's competence to consent to treatment is almost absent. Nurses tend to trust the patients rejection of life support, even when the patients have difficulty speaking or suffer from dementia.
Relatives were, according to the health personnel, included in decision-making processes to a very limited extent.
High.
27 Authors, Year, Title,
Country
Aim Participants Method Results Quality
Fetherstonhaugh D, for People With Dementia Living in Residential Aged Care Facilities?
Australia.
To explore the ways in which direct care staff in Australian RACFs perceive that they support and facilitate decision making for people with dementia.
29 Nurses.
42 Personal care assistant/personal carer/assistant in nursing.
4 Nurse unit manager/care manager. 8 focus groups interviews.
Software (NVIVO 9) was used for a first analysis, then themes and
categories were identified.
The ways in which staff in this study felt that they could support and facilitate decision making for people with dementia can be summarized by the core category, “A little effort goes a long way.” Three sub-categories: “Keeping it simple,” “Knowing the person,” and “Negotiating a
compromise,” provide more details.
When the severely ill elderly patient refuses nurses and to illuminate what it means to RNs to face a situation where the patients can/cannot decide for themselves.
40 Nurses in total:
20 Nurses from the oncological care unit, composed of 16 female and 4 male nurses.
20 female nurses from the dementia care unit. used for the analysis.
Main categories which were uncovered were: The nurses interpretation of the wish of the patients and what is best for the patient, respecting the patient and yourself, the nurses ability to put themselves in the shoes of the patient, being the spokesperson of the patient.
High.
28 Authors, Year, Title,
Country
Aim Participants Method Results Quality
Karlsson S, Bucht G, Rasmussen B, Sandman PO
2000
Restraint use in elder care:
decision making among registered nurses.
Sweden.
This study aimed to illuminate nurses’ reasons for using physical restraint in nursing practice, and in addition, to explore the relationship between nurses’ attitudes and decisions regarding physical restraint use.
30 Nurses:
27 female nurses and 3 male Nurses. The mean age was 42,2 years.
Fictional patient case.
Semi-structured individua interviews. Content analysis was used.
Both groups saw themselves as the advocate for their patients but in different ways. The RNs who talked about a mentally alert patient emphasized that they encouraged their patient to speak up for herself, while the RNs who talked about a severely demented patient emphasized that they tried very hard to interpret their patient’s vague and unclear communicative cues and to act as her advocate, especially in relation to physicians. Transcending experiences of dying relatives and patients as well as role models helped them to achieve their ambition of putting themselves in the patient’s shoes in order to respect and understand her or his wish and/or what was best for them. The majority of RNs strongly rejected active euthanasia.
High.
Norberg A, Hirschfeld M, Davidson B, Davis A, Lauri S, Lin J Y, Phillips L, Pittman E,
Vander Laan R, Ziv L.
1994
Ethical reasoning concerning the feeding of severely demented patients: an international perspective.
Sweden, Arizona, California, Finland, Canada, China and Israel.
The aim of this paper is to compare the ways registered nurses in different countries reasoned about the feeding of a severely demented patient who seems to refuse food.
149 registered Nurses. Fictitious patient case.
Structured individual interviews. Coding and compilation.
The most common reasons for nurses being willing to change their decision to feed or not to feed were an order from the medical head, a request from the patient’s husband and/or the staff meeting. There was a connection between the willingness to feed and the ranking of ethical principles. Nurses who were most prone to feed the patient most often gave a high rank to the ethical principle of sanctity of life, while those who primarily chose not to feed the patient gave a high rank to the ethical principle.
Medium.
29 Authors, Year, Title,
Country
Aim Participants Method Results Quality
Pennbrant S, Hjorton C, Nilsson C, Karlsson, M 2020.
“The challenge of joining all the pieces together” – Nurses’ experience of palliative care for older people with advanced dementia living in
residential aged care units.
Sweden.
To describe nurses’
experiences of palliative care for older people with advanced dementia living in residential aged care units.
The nurses considered that palliative care for older people with advanced dementia is a complex and challenging form of care. In particular, they identified three challenges that must be met: developing specialised knowledge and skills, developing teamwork as a working method and creating a caring relationship.
Quality care for persons experiencing dementia: with the ethical challenges and possibilities in the relationship with patients suffering from dementia and its impact on quality care.
12 participants: 4 nurses, 8 nurses aids.
Age of participants were between 32 years and 56 years, mean value was 44 years.
9 of the participants were female and 3 of the participants were male.
The method is inspired by the French philosopher Ricoeur and represents a qualitative approach based on analysis and
interpretation of individual, open interviews.
Three themes were identified. Knowing the expressions of the patient, understanding the expressions of the patient and mutual participation in care.
High.