Författarna har några förslag på vidare forskning inom ämnet organdonation, bland annat kan andra perspektiv forskas kring, såsom anhörigperspektivet, sjuksköterska perspektivet eller barnperspektivet. Författarna funderar även på om personerna i väntan på organ skulle uppleva mindre skuld kring att få ett organ om den kom från en levande donator, mer specifikt riktas denna tanke till njurtransplantation. Det pågår forskning om att skapa organ från stamceller, det finns förhoppningar att denna metod ska kunna motverka organbristen i framtiden (Hedlund, 2015). Att undersöka vad personer har för åsikter gällande odlade organ skulle vara spännande att utföra. I mitten av 2020 kom ett lagförslag om att neka anhörig-vetot inom svensk vård i hopp av att öka mängden tillgängliga organ. Om lagförslag kommer godkännas är fortfarande oklart men skulle vara intressant att veta vad den svenska
befolkningen tänker kring förslaget (Ohlin, 2020). Författarna anser att organdonation är ett forskningsområde som alltid kan vidareutvecklas med mer forskning.
10. SLUTSATS
Författarna redovisar att majoriteten av de svårigheter som uppstår hos personerna i väntan på organ baseras på bristande kontakt med vården. Personerna behöver uppleva kontroll över deras vardag gentemot att transplantationen kontrollerar deras liv. Antingen genom att dem själva utnyttjar strategier för att hantera väntan eller genom att få stöd från närstående. Känslor som osäkerhet, skuld och hopplöshet kan motverkas genom att personerna får möjligheten att kontinuerligt reflektera med sjukvårdspersonal.
19
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I
Sökschema BILAGA 1
Databas Cinahl 2020-11-27
Sökord Begränsningar Antal träffar Antal lästa
titlar Antal lästa abstracts Antal lästa i fulltext Inkluderade i studien
Block 1: Organ transplantation #1
Ämnesord ("Organ Transplantation") 3,784
#2
Fritext (organ donation* or organ procurement*) 8,241
#3 #1 OR #2 10,985
Block 2: Patient experience
#4
Ämnesord ("Emotions") 34,896
#5
Fritext (experience* or feelings* or emotions* or quality of life*) 659,104
#6
Fritext (patient experience* or patient perspective* or patient view*) 82,444
#7
II
#8 #4 OR #5 OR #6 OR #7 771,233
Block 3: Waiting
#9
Ämnesord ("Waiting Lists") 5,831
#10
Fritext (wait list* or waiting time* or waiting for transplant*) 6,950
#11 #8 OR #9 11,098 Kombination #12 #3 AND #8 AND #11 114 2012-2020 54 English Language 52 Peer-Review 50 50 2 1 1
III
Databas PubMed 2020-11-27
Sökord Begränsningar Antal träffar Antal lästa
titlar Antal lästa abstracts Antal lästa i fulltext Inkluderade i studien
Block 1: Organ transplantation #1
Ämnesord ("Organ Transplantation"[Majr]) 177,440
#2
Fritext (organ donation* or organ procurement*) 26,034
#3 #1 OR #2 192,972
Block 2: Patient experience
#4
Ämnesord ("Emotions"[Majr]) 140,643
#5
Fritext (experience* or feelings* or emotions* or quality of life*) 1,561,831
#6
Fritext (patient experience* or patient perspective* or patient view*) 769,812
#7
IV
#8 #4 OR #5 OR #6 OR #7 2,025,064
Block 3: Waiting
#9
Ämnesord ("Waiting Lists"[Majr]) 4,916
#10
Fritext (wait list* or waiting time* or waiting for transplant*) 17,500
#11 #8 OR #9 35,132 Kombination #12 #3 AND #8 AND #11 2,173 2012-2020 507 English Language 858 858 27 14 9
V
Artikelmatris BILAGA 2
Författare Titel År, land Syfte Metod Urval Resultat Kvalitét
Spiers, Johanna., & Smith, Jonathan-A. Waiting for a kidney from a deceased donor: an interpretative phenomenological analysis
2016, UK. The aim of this paper is to explore what it is like to wait for a kidney from a deceased donor. Semi-structured interviews. Ten participants were recruited.
Two themes: adjustment to the uncertainty of waiting and thinking about receiving a kidney.
Each theme also had smaller categories. Hög. Chong, H. J., Kim, H. K., Kim, S. R., & Lee, S. Waiting for a kidney transplant: the experience of patients with end-stage renal disease in South Korea 2016, South Korea. To explore the experiences of Korean patients with end‐stage renal disease awaiting kidney transplantation. Semi-structured interviews. Eight participants were included.
Six categories were identified: the light at the end of the tunnel, being on call without any promise, a tough tug of war between excitement and frustration, doubts in the complexity, a companion on the hard journey and getting ready for D-day.
Hög.
Burns, T., Stephens,
M., & Fernandez, R. The experience of waiting for a kidney transplant: A qualitative study
2017,
Australia. To provide an understanding of the lived experience of people waiting on dialysis for a kidney transplant from a deceased donor. Semi-structured
interviews. Six participants. Four main themes were identified in the data: living on
dialysis is
physically and mentally demanding; living with uncertainty;
altered relationship dynamics; and feelings towards the deceased
donor. Within these four themes were nine subthemes.
Hög.
Poole, J., Ward, J., DeLuca, E., Shildrick, M., Abbey, S., Mauthner, O.,
Grief and loss for patients before and after heart
transplant
2016, Canada
The purpose of the study was to examine the loss and grief
Interview Thirty
participants.
Three main themes were identified in the data: loss, anticipatory grief and complicated grief.
VI
& Roos, H. experiences of
patients waiting for and living with new hearts. Nielsen, C., Clemensen, J., Bistrup, C., & Agerskov, H. Balancing everyday life-Patients' experiences before, during and four months after kidney transplantation
2018, Denmark.
To explore patients experiences before, during and four months after kidney transplantation.
Semi‐structured interviews.
Eighteen participants.
Three themes emerged: waiting time and hope during everyday life, transformation during the kidney transplantation process and towards a new everyday life with positive prospects.
Hög.
Speight, J., Woodcock, A. J., Reaney, M. D., Amiel, S. A., Johnson, P., Parrott, N., Rutter, M. K., Senior, P., & Shaw, J. A.
Well, I Wouldn't be Any Worse Off, Would I, Than I am Now? A Qualitative Study of Decision-Making, Hopes, and Realities of Adults With Type 1 Diabetes Undergoing Islet Cell Transplantation 2016, UK and Canada.
Aim was to explore candidates and recipients' expectations of transplantation, their experience of being on the waiting list, and (for recipients) the procedure and life posttransplant. Semi‐structured interviews. Sixteen participants were included in this study.
Themes: Expectations, hopes, and realities; decision-making; waiting and uncertainty; the procedure, hospital stay, and follow-up. Hög. Calestani, M., Tonkin- Crine, S., Pruthi, R., Leydon, G., Ravanan, R., Bradley, J-A., Tomson, C-R., Forsythe, J-L., Oniscu, G-C., Bradley C., Cairns J., Dudley C., Watson C., Draper H., Johnson R-J., Metcalfe W., Fogarty D-G., Roderick, P. Patient attitudes towards kidney transplant listing: qualitative findings from the ATTOM study.
2014, UK. This qualitative
study aimed to explore patients' views and experiences of kidney transplant listing. Semi - structured
interviews. Fifty-three participants
were interviewed.
Two main themes were identified:
Patients´ experiences of the decision-making process. Patients´understanding of the transplant waiting list process.
VII Yngman‐Uhlin, P., Fogelberg, A., & Uhlin, F. Life in standby: Hemodialysis patients' experiences of waiting for kidney transplantation.
2016,
Sweden. Aim was to explore the experiences of hemodialysis patients who are waiting for a kidney transplant.
Interview. Eight
patients. For main themes:the waiting process, awareness that time is running out, need for
communication, and having relief and hope for the future Sub themes were also included.
Hög.
Hart, A., Bruin, M., Chu, S., Matas, A., Partin, M. R., & Israni, A. K. Decision support needs of kidney transplant candidates regarding the deceased donor waiting list: A qualitative study and conceptual framework 2019,
USA. Sought to characterize
knowledge and decision support needs regarding kidney transplant outcomes and options. Semi-structured
interviews . Twenty-eight
patients.
Four themes: candidates have a limited understanding,
candidates desired frank discussions, emotional barriers impact, participants relied on the support of family and friends.
Medelhög. Lønning K, Midtvedt K, Heldal K, Andersen MH. Older kidney transplantation candidates' expectations of improvement in life and health following kidney transplantation: semistructured interviews with enlisted dialysis patients aged 65 years and older
2017,
Norway The aim was to study the
expectations of improvement in life and health following kidney transplantation (KTx) in a population of wait-listed patients ≥65 years with end-stage kidney disease.
Semi-structured
interviews Fifteen participants. Two main themes: ‘receiving a kidney is getting life back’ and ‘grasp the chance’.
VIII
Kvalitetsgranskningsmall BILAGA 3
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