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Article ; Online: Home symptom management training programme: carer evaluation.

Parker, Deborah / Reymond, Liz / Cooper, Karen / Tieman, Jennifer / Ivynian, Serra

BMJ supportive & palliative care

2024 Volume 13, Issue e3, Page(s) e1390–e1397

Abstract: Objectives: Most people say if they had a terminal illness, they would prefer to be cared for at home and, if possible, to die there. Often this is not possible without a carer to assist with on-going practical care and symptom management. If ... ...

Abstract	Objectives: Most people say if they had a terminal illness, they would prefer to be cared for at home and, if possible, to die there. Often this is not possible without a carer to assist with on-going practical care and symptom management. If breakthrough symptoms are not treated in a timely manner, symptoms can escalate quickly causing increased suffering resulting in unwanted hospital transfers. Many carers report feeling motivated but uneducated for the task of medicine management, especially if it involves preparation and/or administration of subcutaneous medicines This study assesses the impact of an education and resource package, caring@home, on carers' confidence, knowledge, and skills in managing palliative symptoms at home using subcutaneous medicines. Methods: Nurses trained volunteer carers on the use of the package. Carers were invited to complete a 10 min written evaluation survey and to consider consenting to a 30 min semistructure phone interview. Results: Fifty carers returned surveys and 12 were interviewed. Most carers agreed or strongly agreed that the package provided them with the necessary knowledge, skills and confidence to safely and confidently manage breakthrough symptoms using subcutaneous medicines, further, they would recommend the package to others. Interview analysis revealed three main themes: (1) hesitation and motivation to adopt expanded carer role; (2) the importance of a layered approach to support; and (3) avoiding perceived unnecessary contact with nurses. Conclusion: The programme can be used by clinical services to empower carers to help enable a person to be cared for, and to die at home.
MeSH term(s)	Humans ; Caregivers/education ; Palliative Care/methods ; Delivery of Health Care ; Pharmaceutical Preparations ; Surveys and Questionnaires
Chemical Substances	Pharmaceutical Preparations
Language	English
Publishing date	2024-01-08
Publishing country	England
Document type	Journal Article
ISSN	2045-4368
ISSN (online)	2045-4368
DOI	10.1136/bmjspcare-2022-003580
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Article ; Online: Who cares for the carers? carerhelp: development and evaluation of an online resource to support the wellbeing of those caring for family members at the end of their life.

Tieman, Jennifer / Hudson, Peter / Thomas, Kristina / Saward, Di / Parker, Deborah

BMC palliative care

2023 Volume 22, Issue 1, Page(s) 98

Abstract: Background: Most people living with a terminal illness and approaching death will need the assistance of a non-professional carer such as a family member, friend, or neighbour to provide physical, emotional, and practical caring supports. A significant ... ...

Abstract	Background: Most people living with a terminal illness and approaching death will need the assistance of a non-professional carer such as a family member, friend, or neighbour to provide physical, emotional, and practical caring supports. A significant portion of these carers can feel overwhelmed, isolated and experience psychological and/or financial distress. Carers can have unmet information needs and information needs can change across the caring period. Methods: Guided by an Australian National Reference Group, this project undertook a multiphase set of activities to enable the development of an online carer resource. These activities included a literature review of key issues and considerations for family carers supporting someone with a terminal illness, a scoping scan of existing online resources, and interviews and focus groups with eighteen carers to understand their needs and context of caring. This information formed the basis for potential digital content. A web project team was established to create the information architecture and content pathways. User testing survey and usability assessment of the CarerHelp Website was undertaken to assess/optimise functionality prior to release. An evaluation process was also devised. Results: The literature review identified carer needs for practical and psychological support along with better education and strategies to improve communication. The scoping scan of available online resources suggested that while information available to carers is plentiful, much of that which is provided is general, disparately located, inadequately detailed, and disease specific. The eighteen carers who were interviewed highlighted the need for helpful information on: services, symptom management, relationships, preparation for death, managing the emotional and psychological burden that often accompanies caring, and support during bereavement. User testing and usability assessment of the prototype resource led to changes to enhance the user experience and effectiveness of navigation. It also highlighted a lack of awareness of existing resources and the needs of marketing and communication to address this problem. Conclusions: The project led to the development of an open access online resource, CarerHelp ( www.carerhelp.com.au ), for use by carers and families caring for a person who has palliative care needs. The web metrics demonstrate substantial use of the resources.
MeSH term(s)	Humans ; Caregivers/psychology ; Australia ; User-Computer Interface ; Palliative Care/psychology ; Family/psychology ; Social Support
Language	English
Publishing date	2023-07-20
Publishing country	England
Document type	Review ; Journal Article
ZDB-ID	2091556-1
ISSN	1472-684X ; 1472-684X
ISSN (online)	1472-684X
ISSN	1472-684X
DOI	10.1186/s12904-023-01225-1
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Article ; Online: Managers' experiences of providing end-of-life care under the Home Care Package Program.

Simonetti, Simone / Parker, Deborah / Mack, Holly A / Wise, Sarah

Australasian journal on ageing

2023 Volume 42, Issue 3, Page(s) 527–534

Abstract: Objective: The study explored the experiences of Australian aged care providers in supporting clients on a home care package to die at home.: Methods: Semistructured interviews were conducted with 13 aged care managers responsible for delivering ... ...

Abstract	Objective: The study explored the experiences of Australian aged care providers in supporting clients on a home care package to die at home. Methods: Semistructured interviews were conducted with 13 aged care managers responsible for delivering services under the Home Care Package Program. Interviews were analysed thematically. Results: Four themes emerged that illuminated managers' experiences: struggling to meet a preference to die at home; lack of opportunities to build workforce capacity in end-of-life care; challenges in negotiating fragmented funding arrangements between health and aged care providers; and mixed success in collaborating across sectors. Conclusions: Aged care providers want to support older Australians who prefer to stay at home at the end of life. However, most clients are admitted to a residential facility when their care needs exceed a home care budget long before a specialist palliative care team will intervene. Budgets for health and aged care providers must be sufficient and flexible to support timely access to end-of-life care, to reward collaboration across sectors and to invest in building palliative care skills in the nursing and personal care workforce.
MeSH term(s)	Humans ; Aged ; Australia ; Terminal Care ; Home Care Services ; Palliative Care ; Workforce
Language	English
Publishing date	2023-02-21
Publishing country	Australia
Document type	Journal Article
ZDB-ID	1457406-8
ISSN	1741-6612 ; 0726-4240 ; 1440-6381
ISSN (online)	1741-6612
ISSN	0726-4240 ; 1440-6381
DOI	10.1111/ajag.13171
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Article ; Online: An evaluation of an online education programme to improve nurses' ability to support carers to use subcutaneous medicines.

Parker, Deborah / Reymond, Liz / Cooper, Karen / Tieman, Jennifer / Ivynian, Serra

International journal of palliative nursing

2023 Volume 29, Issue 11, Page(s) 538–546

Abstract: Background: Most Australians say they wish to die at home, but many are admitted to inpatient facilities for symptom management. Caring@home resources can be used to support informal carers to manage breakthrough symptoms safely using subcutaneous ... ...

Abstract	Background: Most Australians say they wish to die at home, but many are admitted to inpatient facilities for symptom management. Caring@home resources can be used to support informal carers to manage breakthrough symptoms safely using subcutaneous medicines. Nurses require education about how to teach informal carers to use these resources. Aim: To evaluate the effectiveness and relevance of an online education programme for registered nurses (RNs) about using the caring@home resources. Methods: Nurses must complete an online survey prior to the commencement of the online education programme and again upon completion to assess their change in skills, knowledge, confidence and attitudes of the RNs. T-tests were conducted to compare average pre- and post-education scores. Findings: The knowledge, skills and confidence of RNs to teach carers improved significantly following the completion of an education programme. There was a significant change in attitude, meaning that the perceived benefit of teaching informal carers to give subcutaneous medicines improved. All reported they would use the resources in their clinical practice. Conclusion: The online education programme is an effective and cost-efficient strategy to educate nurses to support informal carers to help manage breakthrough symptoms using subcutaneous medicines.
MeSH term(s)	Humans ; Caregivers ; Education, Distance ; Australia ; Palliative Care ; Nurses
Language	English
Publishing date	2023-12-01
Publishing country	England
Document type	Journal Article
ZDB-ID	2115109-X
ISSN	2052-286X ; 1357-6321
ISSN (online)	2052-286X
ISSN	1357-6321
DOI	10.12968/ijpn.2023.29.11.538
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Article ; Online: Moving from research generation to knowledge translation in end-of-life care in long term care.

Parker, Deborah

Palliative medicine

2014 Volume 28, Issue 9, Page(s) 1079–1080

MeSH term(s)	Humans ; Nursing Homes/organization & administration ; Quality of Health Care/organization & administration ; Terminal Care/organization & administration
Language	English
Publishing date	2014-10
Publishing country	England
Document type	Comment ; Editorial
ZDB-ID	639247-7
ISSN	1477-030X ; 0269-2163
ISSN (online)	1477-030X
ISSN	0269-2163
DOI	10.1177/0269216314550146
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Article ; Online: Sex differences in dietary consumption and its association with frailty among middle-aged and older Australians: a 10-year longitudinal survey.

Xu, Xiaoyue / Inglis, Sally C / Parker, Deborah

BMC geriatrics

2021 Volume 21, Issue 1, Page(s) 217

Abstract: Background: Nutritional status has been considered as a key factor in preventing the development of the frailty syndrome. However, sex-specific dietary consumption transition over time and how it impacts of frailty status are unclear.: Method: We ... ...

Abstract	Background: Nutritional status has been considered as a key factor in preventing the development of the frailty syndrome. However, sex-specific dietary consumption transition over time and how it impacts of frailty status are unclear. Method: We assessed 113,039 adults (aged 50 years and over) from the 45 and Up Study who had completed both baseline (2006-2009) and follow-up (2012-2015) surveys. Dietary consumption was assessed by a short food frequency questionnaire. Frailty was identified by the FRAIL scale. Multinomial regression models were used to examine the association between a long-term dietary consumption and frailty, stratified by sex. Results: Of a total of 113,039 participants, females had a higher percentage of pre-frailty and frailty than males (pre-frailty: 35.5% for female and 30.1% for male; frailty: 4.86% for female and 3.56% for male). As age increased, males had significant decreases in overall dietary risk scores, while females had significant increases in overall dietary risk scores. Males and females with a long-term consumption of adequate fruits, high grains or had a variety of foods were related to a low risk of frailty. Females with a long-term consumption of adequate vegetables or high lean meats and poultry were related to a low risk of frailty. Females with an unhealthy diet at both surveys [Relative Risk Ratio (RRR) = 1.32, 95% CI: 1.18; 1.49], and those with unhealthy diet at either surveys (RRR = 1.28, 95% CI: 1.12; 1.47, RRR = 1.19, 95% CI: 1.04; 1.37) had a higher risk of frailty compared to those had a long-term healthy diet. No association were found between overall dietary risk and frailty for males. Conclusion: Males and females changed their dietary consumption as they age. These changes affect its association with frailty, particularly for females. Sex-specific dietary advice in prevention of frailty needs to be further developed.
MeSH term(s)	Aged ; Australia/epidemiology ; Diet ; Female ; Frail Elderly ; Frailty/diagnosis ; Frailty/epidemiology ; Humans ; Longitudinal Studies ; Male ; Middle Aged ; Sex Characteristics
Language	English
Publishing date	2021-03-31
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2059865-8
ISSN	1471-2318 ; 1471-2318
ISSN (online)	1471-2318
ISSN	1471-2318
DOI	10.1186/s12877-021-02165-2
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Article ; Online: The Effectiveness and Characteristics of Communication Partner Training Programs for Families of People With Dementia: A Systematic Review.

Folder, Naomi / Power, Emma / Rietdijk, Rachael / Christensen, Iben / Togher, Leanne / Parker, Deborah

The Gerontologist

2023 Volume 64, Issue 4

Abstract: Background and objectives: Communication partner training (CPT) is essential in dementia care. Despite families being the largest group of community carers, previous reviews primarily focused on formal carers. This study aimed to understand the ... ...

Abstract	Background and objectives: Communication partner training (CPT) is essential in dementia care. Despite families being the largest group of community carers, previous reviews primarily focused on formal carers. This study aimed to understand the characteristics and effectiveness of CPT for families of people with dementia. Research design and methods: The systematic review included intervention/protocol studies on dementia CPT for families, excluding formal carers and programs not focused on communication. CINAHL, PsycINFO, SpeechBITE, Medline, SCOPUS, and Embase were searched between November 30 and December 6, 2021. After deduplication, 3,172 records were screened. Quality assessment used JBI Critical Appraisal tools and the Mixed Methods Appraisal Tool. Data synthesis utilized three reporting tools, the International Classification of Functioning, Disability, and Health, and content analysis. Results: Of 30 studies (27 programs), there were 10 quasi-experimental, 5 RCTs, 4 mixed methods, 4 case studies, 4 qualitative, and 2 protocols. Studies were published between 1998 and 2021 and included 671 family members. Characteristics varied with 7/27 programs including consumers during creation and one program including telehealth. One study included all reporting tool criteria. Programs typically used 4 intervention functions, with 12/27 programs addressing 3 behavior change areas. 33/74 outcome measures targeted the "Environment" of the person with dementia. Studies showed positive improvements in communication skills and knowledge, with mixed results on behavior/psychosocial outcomes. Qualitative results identified improvements in conversation and attitudes. Discussion and implications: CPT for families improves communication outcomes, however, quality of studies varied significantly. Future research should address gaps in telehealth, consumer involvement, and intervention descriptions.
MeSH term(s)	Humans ; Dementia ; Caregivers/psychology ; Communication ; Outcome Assessment, Health Care ; Family
Language	English
Publishing date	2023-07-12
Publishing country	United States
Document type	Systematic Review ; Journal Article
ZDB-ID	216760-8
ISSN	1758-5341 ; 0016-9013
ISSN (online)	1758-5341
ISSN	0016-9013
DOI	10.1093/geront/gnad095
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Article ; Online: A qualitative comparison of care home staff and palliative care specialists' experiences of providing end of life care to people living and dying with dementia in care homes in two countries: A focus group study.

Handley, Melanie / Parker, Deborah / Bunn, Frances / Goodman, Claire

Palliative medicine

2021 Volume 36, Issue 1, Page(s) 114–123

Abstract: Background: Palliative care for people with dementia dying in care homes is an important aspect of long-term care. Whilst there is consensus about the principles of palliative care, less is known about how care home staff negotiate and influence ... ...

Abstract	Background: Palliative care for people with dementia dying in care homes is an important aspect of long-term care. Whilst there is consensus about the principles of palliative care, less is known about how care home staff negotiate and influence decisions around end of life and how organisational context shapes that process. Aim: To explore the views and experiences of care home staff and palliative care specialists on end of life care in care homes and understand how care home settings affected palliative care provision in England and Australia. Design/participants: Eight focus groups in Australia and England with care home staff and palliative care specialists ( Findings: Australian participants reported collaboration between care home staff, visiting professions and family members though case conferences. English participants discussed resident-focussed involvement from specialists that was less formally organised. Negotiating roles and responsibilities in end of life care; the importance of relationships to overcome deficiencies in formal processes; and the legitimacy and authority of advance care planning at times of crisis were recurring themes. The organisation and embedding of end of life care in processes and practices of care homes differed; this closely linked to care home procedures in Australia but was less apparent in England. Conclusion: In both countries, partnership working was recognised and valued as key to effective palliative care. Work that enables care home staff to identify challenges with visiting professionals, such as agreeing priorities for care and negotiating their shared responsibilities, may lead to context-sensitive, sustainable solutions.
MeSH term(s)	Australia ; Dementia/therapy ; Focus Groups ; Humans ; Nursing Homes ; Palliative Care ; Terminal Care/methods
Language	English
Publishing date	2021-09-03
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	639247-7
ISSN	1477-030X ; 0269-2163
ISSN (online)	1477-030X
ISSN	0269-2163
DOI	10.1177/02692163211043374
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Article ; Online: The perceptions of palliative care medical practitioners towards oral health: A descriptive qualitative study.

Villarosa, Amy R / Agar, Meera / Kong, Ariana / Sousa, Mariana S / Harlum, Janeane / Parker, Deborah / Srinivas, Ravi / Wiltshire, Jennifer / George, Ajesh

Palliative medicine

2024 Volume 38, Issue 3, Page(s) 310–319

Abstract: Background: Oral health problems are common, but often overlooked, among people receiving palliative care.: Aim: To better understand how oral health can be addressed in this population, this study aimed to explore the perceptions of oral health care ...

Abstract	Background: Oral health problems are common, but often overlooked, among people receiving palliative care. Aim: To better understand how oral health can be addressed in this population, this study aimed to explore the perceptions of oral health care among medical practitioners who provide palliative care to inform the development of a palliative oral health care program. Design: A descriptive qualitative design was adopted. Setting/participants: A single focus group was conducted with 18 medical practitioners at a palliative care facility in Sydney, Australia. All participants had experience providing palliative care services to clients. The focus group was audio recorded, transcribed and thematically analysed. Results: The results from the inductive thematic analysis identified four themes. The themes highlighted that participants were aware of the oral health needs of people receiving palliative care; however, they also reflected on the complexity in delivering oral health care across the healthcare settings, as well as the challenges around cost, lack of appropriate dental referral pathways, time constraints and limited awareness. Participants also provided recommendations to improve the delivery of oral health care to individuals receiving palliative care. Conclusions: To improve the provision of oral health care in this population, this study highlighted the need for oral health training across the multidisciplinary team, standardised screening assessments and referrals, a collective responsibility across the board and exploring the potential for teledentistry to support oral health care provision.
MeSH term(s)	Humans ; Palliative Care/methods ; Oral Health ; Qualitative Research ; Australia ; Health Personnel
Language	English
Publishing date	2024-03-19
Publishing country	England
Document type	Journal Article
ZDB-ID	639247-7
ISSN	1477-030X ; 0269-2163
ISSN (online)	1477-030X
ISSN	0269-2163
DOI	10.1177/02692163241233974
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Article ; Online: Enhancement of Synthesis of Bacillus cereus Enterotoxin Using a Sac-Culture Technique.

Parker, Deborah A / Goepfert, J M

Journal of food protection

2019 Volume 41, Issue 2, Page(s) 116–117

Abstract: Synthesis of Bacillus cereus enterotoxin was enchanced when the organism was grown by the sac-culture method. Of the three other major extracellular proteins examined, only lecithinase synthesis was enhanced. Advantages of the sac-culture method are that ...

Abstract	Synthesis of Bacillus cereus enterotoxin was enchanced when the organism was grown by the sac-culture method. Of the three other major extracellular proteins examined, only lecithinase synthesis was enhanced. Advantages of the sac-culture method are that it helps simplify purification of B. cereus enterotoxin, and that while being simpler and more reduced in scale than that of a fermenter culture, it still yields the same enterotoxin levels on a per ml basis.
Language	English
Publishing date	2019-01-30
Publishing country	United States
Document type	Journal Article
ZDB-ID	243284-5
ISSN	1944-9097 ; 0362-028X
ISSN (online)	1944-9097
ISSN	0362-028X
DOI	10.4315/0362-028X-41.2.116
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