Tímarit hjúkrunarfræðinga - 2019, Side 78

Tímarit hjúkrunarfræðinga - 2019, Side 78
þessu málefni til að fá breiðari sýn á þennan mikilvæga þátt í umönnun alzheimer-sjúklinga og reynslu aðstandenda af þeirri þjónustu sem veitt er. Skortur á íslenskum rannsóknum almennt um þetta efni, sem hér er til skoðunar, kemur í veg fyrir samanburð á ánægju aðstandenda alzheimer-sjúklinga hérlendis og erlendis. Þakkarorð Þeim órtán einstaklingum sem tóku þátt í þessari rannsókn eru færðar bestu þakkir fyrir dýrmætar upplýsingar, traustið og einlægnina. Þakkir fá fulltrúar alzheimer samtakanna og stjórnendur á þeim hjúkrunarheimilum sem áttu hlut að rann - sókninni fyrir aðstoð við upplýsingaöflun. Heimildir alzheimer’s association. (2019). What is dementia? alzheimer’s association: Chicago. Bauer, M., fetherstonhaugh, D., Blackberry, i., farmer, j., og Wilding, C. (2019). identifying support needs to improve rural dementia services for people with dementia and their carers: a consultation study in Victoria, australia. Australian Journal of Rural Health, 27(1), 22–27. doi: 10.1111/ ajr.12444 Beck, E. r., Mcilfatrick, S., hasson, f., og Leavey, g. (2017). nursing home manager’s knowledge, attitudes and beliefs about advance care planning for people with dementia in long‐term care settings: a cross‐sectional survey. Journal of Clinical Nursing, 26(17–18), 2633–2645 Bengtsson, M. (2016). how to plan and perform a qualitative study using content analysis. Nursing Plus Open, 2, 8–14. Chan, D., Livingston, g., jones, L., og Sampson, E. L. (2013). grief reactions in dementia carers: a systematic review. International Journal of Geriatric Psychiatry, 28(1), 1–17. Creswell, j. W. (2014). Research design: Qualitative, quantitative and mixed methods approaches (4. útg.). Thousand Oaks: SagE publications. Czekanski, k. (2017). CE: Original research: The experience of transitioning to a caregiving role for a family member with alzheimer’s disease or rela- ted dementia. American Journal of Nursing, 117(9), 24–32. doi: 10.1097/ 01.naj.0000524517.60352.84 da fonseca Marins, a. M., hansel, C. g., og da Silva j. (2016). Behavioral changes of elderly with alzheimer’s disease and the burden of care for the caregiver. Escola Anna Nery, 20(2), 352–356. doi: 10.5935/1414-8145. 20160048 graneheim, u. h., og Lundman, B. (2004). Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trust- worthiness. Nurse Education Today, 24(2), 105–112. habermann, B., hines, D., og Davis, L. (2013). Caring for parents with neuro- degenerative disease: a qualitative description. Clinical Nurse Specialist CNS, 27(4), 182–187. doi: 10.1097/nur.0b013e318295576b hallikainen, i., koivisto, a. M., og Välimäki, T. (2018). The influence of the individual neuropsychiatric symptoms of people with alzheimer disease on family caregiver distress-a longitudinal aLSOVa study. International Journal of Geriatric Psychiatry, 1207–1212. doi: 10.1002/gps.4911 kesstan, B., og Pepin, r. (2017). Dementia grief: a theoretical model of a unique grief experience. Dementia, 16(1), 67–78. doi: 10.1177/147130 1215581081 kucuk, E. O., og kapucu, S. (2017). Malnutrition in elderly staying in nursing homes. Konuralp Medical Journal / Konuralp Tip Dergisi, 9(3), 46–51. doi: 10.18521/ktd.318404 Leung, L. (2015). Validity, reliability, and generalizability in qualitative rese- arch. Journal of Family Medicine and Primary Care, 4(3), 324. Lishman, E., Cheston, r., og Smithson, j. (2016). The paradox of dementia: Changes in assimilation after receiving a diagnosis of dementia. Dementia, 15(2), 181–203. doi: 10.1177/1471301214520781. Epub 2014 feb 27 Liu, S., Li, C., Shi, Z., Wang, X., Zhou, Y., Liu, S., … ji, Y. (2017). Care - giver burden and prevalence of depression, anxiety and sleep disurbances in alzheimer’s disease caregivers in China. Journal of Clinical Nursing, 26(9–10), 1291–1300. doi: 10.1111/jocn.13601. Epub 2016 nov 23 Llangue, S., Savage, L., rosenburg, n. og Caserta, M. (2016). Concept analysis: alzheimer’s caregiver stress. Nursing Forum, 51(1), 21–31. doi: 10.1111/ nuf.12090. Epub 2014 May1 Lopez, r. P., Mazor, k. M., Mitchell, S. L., og givens, j. L. (2013). What is fam ily-centered care for nursing home residents with advanced dementia? American Journal of Alzheimer’s Disease and Other Dementias, 28(8), 763– 768. doi: 10.1177/1533317513504613 Lundberg, T., Olsson, M., og furst, C. j. (2013). The perspectives of bereaved family members on their experiences of support in pallaiative care. In- ternational Journal of Palliative Nursing, 19(6), 282–288. Lög um heilbrigðisstarfsmenn nr. 34/2012. Lög um persónuvernd og meðferð persónuupplýsinga nr. 77/2000. McCabe, M., You, E., og Tatangelo g. (2016). hearing their voice: a system - atic review of dementia family caregivers’ needs. The Gerontologist, 56(5), 70–e88. doi: 10.1093/geront/gnw078 Midtsund, a., Litland, a., og hjälmhult, E. (2019). Mothers experiences learning and performing infant massage. a qualitative study. Journal of Clinical Nursing, 28(3–4), 489–498. Miller, M. C. (2011). understanding grief and loss. Bereavement shares much in common with depression. The Harvard Mental Health Letter, 28(6), 1. Monin, j. k., Schulz, r., og feeney, B. C. (2015). Compassionate love in in- dividuals with alzheimer’s disease and their spousal caregivers: associa- tions with caregivers’ psychological health. Gerontologist, 55(6), 981–989. doi: 10.1093/geront/gnu001. Epub 2014 feb 17. Moore, k. j., Davis, S., gola, a., harrington, j., kupeli, n., Vickerstaff, V. … Sampson, E. L. (2017). Experiences of end of life amongst family carers of people with advanced dementia: Longitudinal cohort study with mixed methods. BMC Geriatrics, 17(1), 135. doi: 10.1186/s12877-017-0523-3. Pivodic, L., harding, r., Clanzani, n., McCrone, P., hall, S., Deliens, L., … gomes, B. (2016). home care by general practitioners for cancer patients in the last 3 months of life: an epidemiological study of quality and asso- ciated factors. Palliative Medicine, 30(1), 64–74. Schaber, P., Blair, k., jost, E., Schaffer, M., og Thurner E. (2016). understand- ing family interaction patterns in families with alzheimer’s disease. OTJR: Occupation, Participation and Health, 36(1), 25–33. Sury, L., Burns, k., og Brodaty, h. (2013). Moving in: adjustment of people living with dementia going into a nursing home and their families. Inter- national Psychogeriatrics, 25(6), 867–876. doi: 10.1017/S1041610213000057 Swallow, j. (2017). Expectant futures and an early diagnosis of alzheimer’s disease: knowing and its consequences. Social Science and Medicine, 184:57–64. doi: 10.1016/j.socscimed.2017.05.017. Epub 2017 May 6. Tatangelo, g., McCabe, M., Macleod, a., og You, E. (2018). “i just don’t focus on my needs.” The unmet health needs of partner and offspring caregivers of people with dementia: a qualitative study. International Journal of Nursing Studies, 77, 8–14. Vlachogianni, a., Efthymiou, a., Potamianou, D., Sakka, P., og Orgeta, V. (2016). Life after care: Psychological adjustment to bereavement in family carers of people with dementia. International Psychogeriatrics, 28(5), 815–823. doi: 10.1017/S104161021500201X. Epub 2015 Dec 9. Wang, C. j., Pai, M. C., hsiaso, h. S., og Wang, j. j. (2015). The investigation and comparison of the underlying needs of common disruptive behav - iours in patients with alzheimer’s disease. Scandinavian Journal of Caring Sciences, 29(4), 769–775. Wennberg, a., Dye, C., Streetman-Loy, B., og Pham, h. (2015). alzheimer’s patient familial caregivers: a review of burden and interventions. Health and Social Work, 40(4), e162–e169. doi:10.1093/hsw/hlv062 Yu, h., Wang, X., he, r., Liang, r., og Zhou, L. (2015). Measuring the care - gi ver burden of caring for community-residing people with alzheimer’s disease PLOS ONE, 10(7), 1–13:e0132168. doi: 10.1371/journal.pone. 0132168 tara björt guðbjartsdóttir og elísabet hjörleifsdóttir 78 tímarit hjúkrunarfræðinga • 3. tbl. 95. árg. 2019
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