Fran McInerney

Provision of food and fluids in terminal care: a sociological analysis.

The artificial provision of nutrition and hydration to those with end-stage malignant disease is addressed. The physiology of cancer is investigated and is found to render such treatment futile in many instances. An analysis of the sociology of food, and the role of gender in its provision is discussed, and placed in the social milieu of the acute hospital, where there is to be found a cultural replication of the family. It is hypothesized that it is the synthesis of the powerful symbols of food and family that is at the root of behaviour in this area. Implications for patients and caregivers are explored.

Relationship between participants' level of education and engagement in their completion of the Understanding Dementia Massive Open Online Course.

BackgroundThe completion rates for Massive Open Online Courses (MOOCs) generally are low (5-10%) and have been reported to favour participants with higher (typically tertiary-level) education. Despite these factors, the flexible learning offered by a MOOC has the potential to provide an accessible educational environment for a broad spectrum of participants. In this regard, the Wicking Dementia Research and Education Centre has developed a MOOC on dementia that is evidence-based and intended to address this emerging major global public health issue by providing educational resources to a broad range of caregivers, people with dementia, and health care professionals.MethodsThe Understanding Dementia MOOC was designed specifically to appeal to, and support, adult learners with a limited educational background. The nine-week course was presented in three units. Participants passed a quiz at the end of each unit to continue through the course. A series of discussion boards facilitated peer-to-peer interactions. A separate “Ask an Expert” discussion board also was established for each unit where participants posted questions and faculty with expertise in the area responded.ResultsAlmost 10,000 people from 65 countries registered; 4,409 registrants engaged in the discussion boards, and 3,624 (38%) completed the course. Participants’ level of education ranged from postgraduate study to a primary (elementary) school education. Participants without a university education (vocational certificate and below) were as likely as those with a university education to complete the course (χ2 = 2.35, df = 6, p = 0.88) and to engage in the online discussions (F[6, 3799] = 0.85, p = 0.54). Further, participants who completed the MOOC engaged in significantly more discussion board posts than participants who did not complete the course (t = 39.60, df = 4407, p <0.001).ConclusionsThe high completion rate and level of engagement of participants across a broad spectrum of levels of education suggest that MOOCs can be successfully developed and delivered to students from diverse educational backgrounds. The high participation rate also highlights the combination of MOOC design as well as the scale of unmet need for quality dementia education.

Dementia Knowledge Assessment Scale: Development and Preliminary Psychometric Properties

To develop a reliable and valid dementia knowledge scale to address limitations of existing measures, support knowledge evaluation in diverse populations, and inform educational intervention development.

Dementia Knowledge Assessment Tool Version Two: development of a tool to inform preparation for care planning and delivery in families and care staff.

Care for the person with dementia requires understanding of the person’s perspective and preferences, integrated with knowledge of dementia’s trajectory and appropriate care. Version One of the Dementia Knowledge Assessment Tool addressed such knowledge in care workers; Version Two is for families as well as staff. Content validity was established during development. Revisions addressed clarity, time for completion, and reliability. When 671 staff completed Version One before an education intervention, internal consistency reliability estimates exceeded 0.70. Validity was supported by higher scores in professional versus nonprofessional staff and following the education. Version Two was used with 34 family carers and 70 staff members. Internal consistency reliability (Cronbach’s alpha coefficient) was promising (0.79, both groups). Completion was within 15 minutes. Median correct responses (from 21) were 14 for families (range 4–20) and 16 for the staff (range 3–21). Eighteen staff members (26%) and two family carers (6%) reported substantive dementia education. Inclusion of the person with dementia in care planning is often limited because of a late diagnosis and the progressive impacts of the condition. Establishing a shared staff–family understanding of the dementia trajectory and care strategies likely to be helpful is therefore critical to embarking upon the development and implementation of collaborative long term and end-of-life care plans. Version Two can help establish needs for, and outcomes of, education programs and informational resources in a way that is feasible, minimises burden, and facilitates comparisons across family and staff carer groups.

What should we know about dementia in the 21st Century? A Delphi consensus study

BackgroundEscalating numbers of people are experiencing dementia in many countries. With increasing consumer needs, there is anticipated growth in the numbers of people providing diagnostic evaluations, treatments, and care. Ensuring a consistent and contemporary understanding of dementia across all of these groups has become a critical issue. This study aimed to reach consensus among dementia experts from English speaking countries regarding essential and contemporary knowledge about dementia.MethodsAn online Delphi study was conducted to examine expert opinion concerning dementia knowledge with three rounds of data collection. A sample of dementia experts was selected by a panel of Australian experts, including a geriatrician and three professors of aged care. Purposive selection was initially undertaken with the sample expanded through snowballing. Dementia experts (N = 19) included geriatricians, psychologists, psychiatrists, neuroscientists, dementia advocates, and nurse academics from the United Kingdom, United States, and Australia. In the first round, these participants provided open-ended responses to questions determining what comprised essential knowledge about dementia. In the second round, responses were summarised into 66 discrete statements that participants rated on the basis of importance. In the third round, a rank-ordered list of the 66 statements and a group median were provided and participants rated the statements again. The degree of consensus regarding importance ratings was determined by assessing median, interquartile range, and proportion of experts scoring above predetermined thresholds. Correlation scores were calculated for each statement after the final round to identify changes in statement scores.ResultsThe Delphi experts identified 36 statements about dementia that they considered essential to understanding the condition. Statements about care for a person experiencing dementia and their care giver represented the largest response category. Other statements, for which full or very high consensus was reached, related to dementia characteristics, symptoms and progression, diagnosis and assessment, and treatment and prevention.ConclusionsThese results summarise knowledge of dementia that is considered essential across expert representatives of key stakeholder groups from three countries. This information has implications for the delivery of care to people with the condition and the development of dementia education programs.

Realizing a palliative approach in dementia care: strategies to facilitate aged care staff engagement in evidence-based practice.

BACKGROUND There is growing evidence that a palliative approach to care provision for people with dementia in residential aged care facilities improves their quality of life and provides support for family members. Despite the development of Guidelines for a Palliative Approach in Residential Aged Care (hereafter the Guidelines), there is limited evidence that these have been adopted. To date, little research has been undertaken to explore processes which could assist aged care staff to develop their practice consistent with the intent of the Guidelines. METHODS This project utilized an action research method, through which staff members from a residential dementia special care unit (SCU) undertook an investigation into their practice to explore how they could develop strategies to support a palliative approach to care provision. A key focus was related to addressing the information needs of family members of residents on the SCU. RESULTS Aged care staff involved in this project had little understanding of available evidence that could assist them to better support family members, including the existence of the Guidelines. Through their engagement in successive action research cycles, these staff accessed evidence-based resources and developed strategies to address the information needs of family members. CONCLUSIONS When provided with an opportunity to reflect on and critique their practice, aged care staff were better positioned to engage with evidence concerning a palliative approach and to execute change in their practice to improve care provision for family members.

Experiences of graduate registered nurses in aged care: A case study

Abstract The number of Registered Nurses (RNs) working in aged care is declining, with few new RNs choosing aged care in their graduate year. This paper describes a study exploring 11 female graduate RNs’ experiences of working in an aged care setting in Victoria, Australia to assist in informing recruitment and retention strategies in aged care. Semi-structured interviews were undertaken and thematically analysed using open coding. This paper presents findings related to the themes of ‘free choice or allocated to aged care’ ‘reasons for graduate choices’, ‘nature of aged care: a match or mismatch for graduates’, ‘lack of professional support for graduate RNs in aged care’ and ‘role confusion’. Findings supported the recruitment of graduate RNs with an initial interest in aged care into the sector. A clearer definition of the new graduate RN’s role in aged care and a standardised graduate program may assist in increasing retention of such nurses in the future.

A new standard in dementia knowledge measurement: Comparative validation of the Dementia Knowledge Assessment Scale and the Alzheimer’s Disease Knowledge Scale.

To compare the psychometric performance of the Dementia Knowledge Assessment Scale (DKAS) and the Alzheimers Disease Knowledge Scale (ADKS) when administered to a large international cohort before and after online dementia education.

Building community capacity for end of life: an investigation of community capacity and its implications for health-promoting palliative care in the Australian Capital Territory

This study identified and examined community-based activities around death, dying and end-of-life care which might reflect a health-promoting palliative care (HPPC) philosophy. This approach is argued to restore community ownership of, and agency in, dying and death through the building of community capacity. However, the enactment of the HPPC approach has not been extensively examined in Australia. Current understandings of community capacity-building relating to end of life are orientated toward service provision. A qualitative interpretive approach was used to engage with local community groups in the Australian Capital Territory with an interest in death, dying and end-of-life care. Data were collected from ten in-depth, semi-structured interviews and thematically analysed. The themes of Practical Support, Respect and Responsiveness and Connection and Empowerment were identified, reflecting community activities initiated in response to the experience of life-limiting illness. Building community capacity offers to restore community agency in end-of-life concerns, while potentially enhancing health service provision through collaborative partnerships. This study indicates an existing community capacity, demonstrated by activities that promote socialisation, peer support and normalisation of death and dying. However, as these activities occur primarily in response to illness, proactive and preparatory interventions in HPPC are a priority.

Drawing the experience of chronic vaginal thrush and complementary and alternative medicine

This paper demonstrates a method of collaborative drawing‐based enquiry used to elicit experiential narratives in qualitative research. In the health sciences the method, which uses a drawing strategy embedded within in‐depth interviews, can illuminate experiences of illness, treatment and interaction with health practitioners. Here it is applied to the experience of chronic vaginal thrush and associated use of complementary and alternative medicine. In the study reported here, images were created and interpreted by participants as part of the interview process and transcripts were analysed according to narrative methods. The results yielded themes in three areas of inquiry: the experience of chronic vaginal thrush and uses of bio‐medical and complementary alternative medicine therapies. We argue that the method can be applied more widely to access and represent participant experiences of illness and that it has particular utility for researchers in health sciences who are working on sensitive topics and with vulnerable participants.