Tímarit hjúkrunarfræðinga - 2019, Qupperneq 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