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Tyrrell, M., Hillerås, P., Skovdahl, K., Fossum, B. & Religa, D. (2019). Voices of spouses living with partners with neuropsychiatric symptoms related to dementia. Dementia, 18(3), 903-919
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2019 (English)In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 18, no 3, p. 903-919Article in journal (Refereed) Published
Abstract [en]

Persons with dementia, who reside in their own homes, are often cared for by family members. The presence of a family career is said to have a protective effect, postponing admissions to residential care. The majority of persons with dementia develop behavioural and personality changes during the disease trajectory also known as neuropsychiatric symptoms. Quality of life for both the person with neuropsychiatric symptoms and their careers are affected, increasing suffering and risk for hospitalisation and admission to long-term residential care. Family careers to persons with dementia have identified behavioural changes as more distressing than cognitive impairment leading to increased burden of care and admissions to residential care. Knowledge gaps exist regarding how family careers living with persons with dementia experience neuropsychiatric symptoms in a community setting. The aim was to describe spouses' experiences of living with partners who have developed neuropsychiatric symptoms related to dementia in a community setting. Semi-structured interviews were carried out with 14 spouses of partners with dementia. The interviews included completion of the neuropsychiatric inventory. Interview data were analysed using a content analysis approach. The results showed that spouses identified in the neuropsychiatric inventory that partners with dementia had on average five to eight co-existing symptoms. Frequency, severity and distress varied. From the narrative data, the theme living on the edge lacking support and time for self, emerged. The findings of this study suggest that support offered to persons with dementia and their spouses should have a person-centred approach meeting individual needs. Safety and welfare of persons with dementia and their spouses residing in their own homes may be jeopardised in the presence of neuropsychiatric symptoms. A greater awareness is required in the community regarding the well-being of these persons.

Place, publisher, year, edition, pages
Sage Publications, 2019
Keywords
Community, Dementia, Neuropsychiatric symptoms, Spouses’/partners’ experiences
National Category
Nursing
Identifiers
urn:nbn:se:rkh:diva-2474 (URN)10.1177/1471301217693867 (DOI)28385034 (PubMedID)
Available from: 2017-04-26 Created: 2017-11-06 Last updated: 2019-06-24Bibliographically approved
Eriksson, J., Gellerstedt, L., Hillerås, P. & Craftman, Å. G. (2018). Registered nurses' perceptions of safe care in overcrowded emergency departments. Journal of Clinical Nursing, 27(5-6), e1061-e1067
Open this publication in new window or tab >>Registered nurses' perceptions of safe care in overcrowded emergency departments
2018 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 27, no 5-6, p. e1061-e1067Article in journal (Refereed) Published
Abstract [en]

AIMS AND OBJECTIVE: To explore registered nurses' perceptions of safe practice in care for patients with an extended length of stay in the emergency department.

BACKGROUND: Extended length of stay and overcrowding in emergency departments are described internationally as one of the most comprehensive challenges of modern emergency care. An emergency department is not designed, equipped or staffed to provide care for prolonged periods of time. This context, combined with a high workload, poses a risk to patient safety, with additional medical errors and an increased number of adverse events. From this perspective, it is important to extend our knowledge and to describe registered nurses' experiences of safe practice.

DESIGN: A qualitative, inductive and descriptive study.

METHODS: Qualitative interview study carried out in five emergency departments. Data were analysed using a qualitative content analysis with a latent approach.

RESULTS: Patient safety meets obstacles in the clinical environment involving experiencing deficiencies regarding patient safety in the clinical setting and the impact of working procedures and routines. Moreover, nurses are challenged in their professional responsibilities involving balancing essential nursing care and actual workload; it is common to experience emotional reactions based on feelings of loss of control.

CONCLUSIONS: From the nurses' perspective, a prolonged stay in the emergency department may lead to negative consequences for both patient safety and care as well as registered nurses' psychosocial experiences. An extended length of stay significantly reduces the level of nursing and caring that registered nurses can perform in the emergency department. This article is protected by copyright. All rights reserved.

Keywords
Adult Nursing, Emergency Care, Emergency Department, Patient Safety, Qualitative Research and Interview
National Category
Nursing
Identifiers
urn:nbn:se:rkh:diva-2483 (URN)10.1111/jocn.14143 (DOI)29076280 (PubMedID)
Available from: 2017-11-06 Created: 2017-11-06 Last updated: 2018-04-26Bibliographically approved
Tyrrell, M., Hillerås, P., Skovdahl, K., Fossum, B. & Religa, D. (2017). Voices Of Spouses To Partners With Neuropsychiatric Symptoms Related To Dementia. In: Abstract Book: Together towards a new era. Paper presented at 32nd International Conference of Alzheimer's Disease International, Kyoto, 26-29 april, 2017 (pp. 568-568).
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2017 (English)In: Abstract Book: Together towards a new era, 2017, p. 568-568Conference paper, Oral presentation with published abstract (Other academic)
Abstract [en]

Introduction: The presence of a family career is said to have a protective effect in dementia care, postponing admissions to residential care. The majority of persons with dementia develop behavioural and personality changes during the disease trajectory. These symptoms are called neuropsychiatric symptoms (NPS). Little is known regarding family members` experiences of living with persons with NPS related to dementia, in a community setting.

Objectives: To describe spouses’ experiences of living with partners who have neuropsychiatric symptoms related to dementia.

Results

Methods: Semi-structured interviews with 14 spouses of partners with dementia. The interviews were based on the NPI (Neuropsychiatric Inventory,Cummings, et al. 1994). The interview data was analysed using content analysis

Table:

Results: Spouses identified that partners with dementia had on average five to eight co-existing NPS . Frequency, severity and distress varied. The neuropsychiatric symptoms highlighted were within three of four possible symptom domains; Behaviour, Psychosis and Mood. From the narrative data five main categories emerged; Support needs, Understanding the impact dementia has on their partner, Being prepared for sudden unpredictable events, Feeling vulnerable and facing domestic violence and Feelings of social isolation. The theme; Living on the edge lacking support and time for self, evolved.

Conclusion: A large proportion of persons with dementia reside in their own homes in the community. Support offered to persons with dementia and their families should have a person-centered approach meeting individual needs. Safety and welfare of persons` with dementia and their partners residing in their own homes may be jeopardized in the presence of neuropsychiatric symptoms. A greater awareness is required in the community of the welfare and wellbeing of these persons.

References: Cummings, J.L., Mega, M., Gray, K.,Rosenberg-Thompson, S., Carusi, D.A. & Gornbein, J. (1994) The Neuropsychiatric Inventory: comprehensive assessment of psychopathology in dementia. See comment in PubMed Commons belowNeurology. Dec;44(12):2308-14

Holtzer, R., Tang, M.X., Devanand, D. P., Albert, S. M., Wegesin, D.J., Marder, K., Bell, K., Albert, M., Brandt, J. & Stern, Y. (2003). Psychopathological features in Alzheimer´s disease: course and relationship with cognitive status. Journal American Geriatric Society. 51(7):953-60

Fauth E, B, & Gibbons A. (2014). Which behavioral and psychological symptoms of dementia are the most problematic? Variability by prevalence, intensity, distress ratings, and associations with carer depressive symptoms. Int J Geriatr Psychiatry; 29: 263–71.

Moore, K., Ozanne, E., Ames, D., & Dow, B., (2013). How do family carers respond to behavioural and psychological symptoms of dementia? International Psychogeriatrics.25:5 743-753.

Disclosure of Interest: None Declared

National Category
Nursing
Identifiers
urn:nbn:se:rkh:diva-2716 (URN)
Conference
32nd International Conference of Alzheimer's Disease International, Kyoto, 26-29 april, 2017
Available from: 2018-10-10 Created: 2018-10-10 Last updated: 2018-10-10Bibliographically approved
Grundberg, Å., Hansson, A., Hillerås, P. & Religa, D. (2016). District nurses' perspectives on detecting mental health problems and promoting mental health among community-dwelling seniors with multimorbidity. Journal of Clinical Nursing, 25(17-18), 2590-2599
Open this publication in new window or tab >>District nurses' perspectives on detecting mental health problems and promoting mental health among community-dwelling seniors with multimorbidity
2016 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 25, no 17-18, p. 2590-2599Article in journal (Refereed) Published
Abstract [en]

AIMS AND OBJECTIVES:

To describe district nurses' perspectives on detecting mental health problems and promoting mental health among homebound older people with multimorbidity.

BACKGROUND:

Mental health problems among older people with multiple chronic conditions, that is, multimorbidity, are challenging issues. These patients' homes often serve as arenas in which district nurses can promote health. Mental health promotion must be studied in greater depth within primary care because older people with multimorbidity are particularly prone to developing poor mental health, which can go undetected and untreated.

DESIGN:

A descriptive, qualitative study using semi-structured interviews and content analysis.

METHODS:

Twenty-five district nurses completed individual or focus group interviews. Data were analysed using qualitative content analysis.

RESULTS:

Most district nurses stated that detecting mental health problems and promoting mental health were important tasks but that they typically focused on more practical home health care tasks. The findings revealed that district nurses focused on assessment, collaboration and social support as means of detecting mental health problems and promoting mental health.

CONCLUSIONS:

The district nurses described various factors and actions that appeared to be important prerequisites for their involvement in primary mental health care. Nevertheless, there were no established goals for mental health promotion, and district nurses often seemed to depend on their collaboration with other actors. Our findings indicated that district nurses cannot bear the primary responsibility for the early detection of mental health problems and early interventions to promote mental health within this population.

RELEVANCE TO CLINICAL PRACTICE:

The findings of this study indicated that workforce training and collaboration between different care providers are important elements in the future development of this field. Early detection and early treatment of mental health-related issues should also be stated as explicit objectives in the provision of care to community-dwelling older people with multimorbidity.

Keywords
Sweden; Ageing; District nurse; Mental health; Mental health promotion; Municipal care
National Category
Gerontology, specialising in Medical and Health Sciences
Identifiers
urn:nbn:se:rkh:diva-2475 (URN)10.1111/jocn.13302 (DOI)27273609 (PubMedID)
Available from: 2017-11-06 Created: 2017-11-06 Last updated: 2018-01-13Bibliographically approved
Grundberg, Å., Hansson, A., Religa, D. & Hillerås, P. (2016). Home care assistants' perspectives on detecting mental health problems and promoting mental health among community-dwelling seniors with multimorbidity. Journal of Multidisciplinary Healthcare, 9, 83-95
Open this publication in new window or tab >>Home care assistants' perspectives on detecting mental health problems and promoting mental health among community-dwelling seniors with multimorbidity
2016 (English)In: Journal of Multidisciplinary Healthcare, ISSN 1178-2390, E-ISSN 1178-2390, Vol. 9, p. 83-95Article in journal (Refereed) Published
Abstract [en]

Introduction: Elderly people with multiple chronic conditions, or multimorbidity, are at risk of developing poor mental health. These seniors often remain in their homes with support from home care assistants (HCAs). Mental health promotion by HCAs needs to be studied further because they may be among the first to observe changes in clients’ mental health status.

Aim: To describe HCAs’ perspectives on detecting mental health problems and promoting mental health among homebound seniors with multimorbidity.

Methods: We applied a descriptive qualitative study design using semi-structured interviews. Content analyses were performed on five focus group interviews conducted in 2014 with 26 HCAs.

Results: Most HCAs stated that they were experienced in caring for clients with mental health problems such as anxiety, depression, sleep problems, and high alcohol consumption. The HCAs mentioned as causes, or risk factors, multiple chronic conditions, feelings of loneliness, and social isolation. The findings reveal that continuity of care and seniors’ own thoughts and perceptions were essential to detecting mental health problems. Observation, collaboration, and social support emerged as important means of detecting mental health problems and promoting mental health. Conclusion: The HCAs had knowledge of risk factors, but they seemed insecure about which health professionals had the primary responsibility for mental health. They also seemed to have detected early signs of mental health problems, even though good personal knowledge of the client and continuity in home visits were crucial to do so. When it came to mental health promotion, the suggestions related to the aim of ending social isolation, decreasing feelings of loneliness, and increasing physical activity. The results indicate that the HCAs seemed dependent on supervision by district nurses and on care managers’ decisions to support the needed care, to schedule assignments related to the detection of mental health problems, and to promote mental health.

Keywords
Home care assistants, Mental health promotion, Municipal care, Older people, Sweden
National Category
Gerontology, specialising in Medical and Health Sciences
Identifiers
urn:nbn:se:rkh:diva-2476 (URN)10.2147/JMDH.S99388 (DOI)26966371 (PubMedID)
Available from: 2017-11-06 Created: 2017-11-06 Last updated: 2018-01-13Bibliographically approved
Tyrrell, M., Hillerås, P., Skovdahl, K., Fossum, B. & Religa, D. (2016). Voices Of Spouses Living With Partners With Behavioural And Psychological Symptoms Related To Dementia. Paper presented at The Alzheimer's Association International Conference, Toronto 22-28 juli, 2016. Alzheimer's & Dementia, 12(7), 1174-1175
Open this publication in new window or tab >>Voices Of Spouses Living With Partners With Behavioural And Psychological Symptoms Related To Dementia
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2016 (English)In: Alzheimer's & Dementia, ISSN 1552-5260, E-ISSN 1552-5279, Vol. 12, no 7, p. 1174-1175Article in journal, Meeting abstract (Other academic) Published
Abstract [en]

Background

Persons with dementia, whdo reside in their own homes, are often cared for by family members or friends. The presence of a family career is said to have a protective effect, postponing admissions to residential care. The majority of persons with dementia develop behavioural and personality changes during the disease trajectory. The quality of life for both the person with behavioural and psychological symptoms and their careers are affected, increasing both suffering and risk for hospitalisation. Family careers to persons with dementia have identified behavioural changes as more distressing than cognitive impairment leading to increased burden of care and admissions to residential care. Knowledge gaps exist regarding how family careers living with persons with dementia experience behavioural and psychological symptoms in a community setting. AIM: To describe spouses’ experiences of living with partners who have behavioural and psychological symptoms related to dementia.

Methods

Semi-structured interviews were carried out with 14 spouses of partners with dementia. The interviews included the completion of the NPI (Neuropsychiatric Inventory, Cummings, 1994). Interview data was analysed using content analysis.

Results

(Preliminary) Spouses identified that partners with dementia had on average five to eight co-existing NPI symptoms. Frequency, severity and distress varied. The behavioural and psychological symptoms highlighted were within three of four possible symptom domains; Behaviour, Psychosis and Mood. From the narrative data four main categories emerged; Support, Coping, Vulnerability and domestic violence AND Social isolation.

Conclusions

A large proportion of persons with dementia reside in the community. Support offered to persons with dementia and their families should have a person-centered approach meeting individual needs. A greater awareness is required regarding welfare and safety of persons with dementia and their partners in a community setting.

National Category
Nursing
Identifiers
urn:nbn:se:rkh:diva-2717 (URN)10.1016/j.jalz.2016.07.103 (DOI)
Conference
The Alzheimer's Association International Conference, Toronto 22-28 juli, 2016
Available from: 2018-10-10 Created: 2018-10-10 Last updated: 2018-10-10Bibliographically approved
Tyrrell, M., Hillerås, P., Skovdahl, K., Fossum, B. & Religa, D. (2016). Voices Of Spouses Living With Partners With Neuropsychiatric Symptoms Related To Dementia. Paper presented at The Alzheimer's Association International Conference, Toronto 22-28 juli, 2016.. Alzheimer's & Dementia, 12(7), 979-980
Open this publication in new window or tab >>Voices Of Spouses Living With Partners With Neuropsychiatric Symptoms Related To Dementia
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2016 (English)In: Alzheimer's & Dementia, ISSN 1552-5260, E-ISSN 1552-5279, Vol. 12, no 7, p. 979-980Article in journal, Meeting abstract (Other academic) Published
Abstract [en]

Background

Persons with dementia, who reside in their own homes, are often cared for by family members or friends. The presence of a family career is said to have a protective effect, postponing admissions to residential care. The majority of persons with dementia develop behavioural and personality changes during the disease trajectory. The quality of life for both the person with behavioural and psychological symptoms and their careers are affected, increasing both suffering and risk for hospitalisation. Family careers to persons with dementia have identified behavioural changes as more distressing than cognitive impairment leading to increased burden of care and admissions to residential care. Knowledge gaps exist regarding how family careers living with persons with dementia experience behavioural and psychological symptoms in a community setting. Aim: To describe spouses’ experiences of living with partners who have neuropsychiatric symptoms related to dementia.

Method

Semi-structured interviews were carried out with 14 spouses of partners with dementia. The interviews included the completion of the NPI (Neuropsychiatric Inventory, Cummings, 1994). Interview data was analysed using content analysis.

Results

The neuropsychiatric symptoms identified were within three of four possible symptom categories; Behaviour, Psychosis and Mood. From the narrative data three main themes emerged; Coping, Domestic violence and vulnerability and Social isolation.

Conclusions

A large proportion of persons with dementia reside in the community, a greater awareness, within the emergency response services about the welfare and safety of these persons and their families is required. Support offered to persons with dementia and their families should be more person-centered meeting their individual needs.

National Category
Nursing
Identifiers
urn:nbn:se:rkh:diva-2718 (URN)10.1016/j.jalz.2016.06.2009 (DOI)
Conference
The Alzheimer's Association International Conference, Toronto 22-28 juli, 2016.
Available from: 2018-10-10 Created: 2018-10-10 Last updated: 2018-10-10Bibliographically approved
Alshaikh, Z., Alkhodari, M., Sormunen, T. & Hillerås, P. (2015). Nurses' knowledge about palliative care in an intensive care unit in Saudi Arabia. Middle East Journal of Nursing, 9(1), 7-13
Open this publication in new window or tab >>Nurses' knowledge about palliative care in an intensive care unit in Saudi Arabia
2015 (English)In: Middle East Journal of Nursing, ISSN 1834-8742, Vol. 9, no 1, p. 7-13Article in journal (Refereed) Published
Abstract [en]

Background: Most patients die in hospital settings either in intensive care unit (ICU), emergency department (ED) or other departments. In Saudi Arabia, approximately 23,000 persons are diagnosed with cancer every year. According to the World Health Organization (WHO), palliative care is a holistic activity that involves physical, psychosocial and spiritual human needs to enhance quality of life for patients and their families. Palliative care is an essential aspect to be applied for patients with chronic diseases to improve their quality of life. Earlier studies have shown that physicians, nurses and nurse assistants who work in long-term care settings lack the knowledge to enforce palliative care principles due to lack of education. According to the WHO, health care professionals should be educated and trained to apply palliative care.Aim: The aim of this study was to explore nurses' knowledge about palliative care in an intensive care unit in Saudi Arabia. Method: Eight individual qualitative semi-structured interviews were conducted. Interviews were audiotaped and transcribed verbatim. Manifest content analysis was used to analyze the data. Results: The palliative care concept was not familiar for most ICU nurses but it was applied in their daily work. Most nurses provided physical care at the end of life to keep the body intact. Some nurses highlighted that dying patients did not feel pain to be treated and did not have emotions to be supported.Conclusions: Nurses had insufficient knowledge of palliative care and how to apply it in ICU setting. The provision of additional education in palliative care is recommended in order to improve the knowledge of palliative care among nurses.

Keywords
Palliative care, Intensive care unit, Knowledge, End of life, Kingdom of Saudi Arabia
National Category
Nursing
Identifiers
urn:nbn:se:rkh:diva-2478 (URN)
Available from: 2015-03-11 Created: 2017-11-06 Last updated: 2017-11-08Bibliographically approved
Gransjön Craftman, Å., Westerbotn, M., von Strauss, E., Hillerås, P. & Marmstål Hammar, L. (2015). Older people's experience of utilisation and administration of medicines in a health- and social care context.. Scandinavian Journal of Caring Sciences, 29(4), 760-768
Open this publication in new window or tab >>Older people's experience of utilisation and administration of medicines in a health- and social care context.
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2015 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 29, no 4, p. 760-768Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: People living at home who lack ability to manage their medicine are entitled to assistance to improve adherence provided by a home care assistant employed by social care.

AIM: The aim was to describe how older people with chronic diseases, living at home, experience the use and assistance of administration of medicines in the context of social care.

DESIGN: A qualitative descriptive study.

METHODS: Ten participants (age 65+) living at home were interviewed in the participants' own homes. Latent content analysis was used.

FINDINGS: The assistance eases daily life with regard to practical matters and increases adherence to a medicine regimen. There were mixed feelings about being dependent on assistance; it interferes with self-sufficiency at a time of health transition. Participants were balancing empowerment and a dubious perception of the home care assistants' knowledge of medicine and safety. Physicians' and district nurses' professional knowledge was a safety guarantee for the medicine process.

CONCLUSIONS: Assistance eases daily life and medicine regimen adherence. Dependence on assistance may affect self-sufficiency. Perceived safety varied relating to home care assistants' knowledge of medicine.

RELEVANCE TO CLINICAL PRACTICE: A well-functioning medicine assistance is crucial to enable older people to remain at home. A person-centred approach to health- and social care delivery is efficient and improve outcome for the recipient of care.

Keywords
institutionalization, dementia, chronic diseases, elderly, population-based study
National Category
Nursing
Identifiers
urn:nbn:se:rkh:diva-1969 (URN)10.1111/scs.12207 (DOI)25648845 (PubMedID)
Available from: 2015-11-18 Created: 2015-11-18 Last updated: 2017-11-08Bibliographically approved
Gransjön Craftman, Å., Hammar, L. M., von Strauss, E., Hillerås, P. & Westerbotn, M. (2015). Unlicensed personnel administering medications to older persons living at home: a challenge for social and care services. International Journal of Older People Nursing, 10(3), 201-210
Open this publication in new window or tab >>Unlicensed personnel administering medications to older persons living at home: a challenge for social and care services
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2015 (English)In: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 10, no 3, p. 201-210Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Administration of medication to care recipients is delegated to home-care assistants working in the municipal social care, alongside responsibility for providing personal assistance for older people. Home-care assistants have practical administration skills, but lack formal medical knowledge.

AIM: The aim of this study was to explore how home-care assistants perceive administration of medication to older people living at home, as delegated to them in the context of social care.

METHODS: Four focus groups consisting of 19 home-care assistants were conducted. Data were analysed using qualitative content analysis.

RESULTS: According to home-care assistants, health and social care depends on delegation arrangements to function effectively, but in the first place it relieves a burden for district nurses. Even when the delegation had expired, administration of medication continued, placing the statutes of regulation in a subordinate position. There was low awareness among home-care assistants about the content of the statutes of delegation. Accepting delegation to administer medications has become an implicit prerequisite for social care work in the municipality.

CONCLUSIONS: Accepting the delegation to administer medication was inevitable and routine. In practice, the regulating statute is made subordinate and consequently patient safety can be threatened. The organisation of health and social care relies on the delegation arrangement to meet the needs of a growing number of older home-care recipients.

IMPLICATIONS FOR PRACTICE: This is a crucial task which management within both the healthcare professions and municipal social care needs to address, to bridge the gap between statutes and practice, to create arenas for mutual collaboration in the care recipients' best interest and to ensure patient safety.

Keywords
administration of medication; delegation; district nurse; home-care assistants; knowledge
National Category
Nursing
Identifiers
urn:nbn:se:rkh:diva-1970 (URN)10.1111/opn.12073 (DOI)25515934 (PubMedID)
Available from: 2015-11-18 Created: 2015-11-18 Last updated: 2017-11-08Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0003-0971-5283

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