Creating person-centred support for people with intellectual disabilities at the end of life: An Australian qualitative study of unmet needs and strategies.

BACKGROUND: People with intellectual disabilities at the end of life are at risk of receiving inadequate and inequitable end-of-life care. This study explores their unmet needs, opportunities for person-centred care and experiences of health service use. METHODS: Qualitative interviews with 26 experienced health professionals and carers were used to explore their patients' and residents' unmet needs and end-of-life care options and to outline strategies to support them. RESULTS: A range of challenges and unmet needs experienced by people with intellectual disabilities are presented in themes: (1) accommodation setting at the end of life: dying 'at home'; (2) personal factors and networks: a circle of support; (3) end-of-life medical care and decision-making. Strategies to facilitate good end-of-life care and a model of care are presented. CONCLUSIONS: Well-prepared and collaborative disability and health service workforces are needed, together with flexible and adequate end-of-life funding to ensure compassionate and person-centred care.

A call to action: The need for improved service coordination during early survivorship for women with breast cancer and partners.

Survivorship is an under-recognized period in the care of women with breast cancer. This paper aimed to determine if supports provided by health services were adequate in meeting the expressed needs of women and partners during survivorship. A mixed-method study consisted of: (1) in-depth interviews with women (n = 18) and partners (n = 8) (completed June 2014-November 2014) and (2) a questionnaire with health providers (n = 34) (completed April 2015) regarding services offered, needs addressed, and barriers to service delivery. Both were completed in Perth, Western Australia. Findings were determined using thematic analysis and descriptive statistics. Many unmet needs were identified by women and partners, including: pain, fatigue, fear of recurrence, employment, leisure, and social and intimacy difficulties. Participants did not receive a formal plan to assist them. Health providers reported a range of supports, including cancer surveillance and management of physical, psychological, emotional, and relationship concerns. However, many barriers concerning service delivery were identified. Despite services reporting that they provided various supports, interview participants did not appear to use and benefit from these. Coordination of service delivery was identified as requiring improvement. The use of survivorship care plans also needs refinement to determine suitability for use during survivorship.

Palliative care for people with schizophrenia: a qualitative study of an under-serviced group in need.

BACKGROUND: People with schizophrenia are at risk of receiving poorer end of life care than other patients. They are often undertreated, avoid treatment and are about half as likely to access palliative care. There are limited options for end of life care for this under-serviced group in need. This study aims to address the paucity of research by documenting possible need, experiences of health care service use and factors affecting palliative care use for people with schizophrenia who have advanced life limiting illness. METHODS: Semi-structured interviews were undertaken with 16 experienced health professionals caring for people with schizophrenia in Western Australia. The interviews focussed on their perceptions and experiences of end of life care, their patients' unmet needs, palliative care options, and suggested services to support this vulnerable group and improve health care provision. The research used a qualitative design and thematic analyses. RESULTS: The participants all advocated strongly for their patients and recognised their extreme vulnerability. They identified a range of challenges and unmet needs experienced by people with schizophrenia at the end of life including: illness factors such as the impact of schizophrenia on information processing and communication; social factors such as stigma, isolation and the absence of a carer; and health care factors such as late diagnosis, delayed access to care, and mismanagement in care. Four themes were organised into two domains with the first exploring the individual and social circumstances of people with schizophrenia, including the challenges they experience in the health care system. The second domain covers themes that discuss barriers and facilitators to people with schizophrenia receiving palliative care and key features in palliative care provision, including recognising declining health, communication and planning, and collaboration and capacity building in the broader health, mental health and palliative care sectors. CONCLUSIONS: To ensure people with schizophrenia are well supported at the end of life a model of palliative care is required that offers both specialised services and capacity building within the pre-existing health workforce. Resources are needed to address the stigma and lack of services faced by this vulnerable group.

The Association of Community-Based Palliative Care With Reduced Emergency Department Visits in the Last Year of Life Varies by Patient Factors.

STUDY OBJECTIVE: Palliative care has been shown to reduce end-of-life emergency department (ED) use. Our objective was to determine how the association of community-based palliative care with reduced ED visits in the last year of life varied by patient factors. METHODS: This was a retrospective cohort study of 11,875 decedents who died with neoplasms, heart failure, renal failure, chronic obstructive pulmonary disease, or liver failure in Western Australia in 2009 to 2010. Outcome measures were adjusted hazard ratios (HRs) and daily (hazard) rates of ED visits. RESULTS: The adjusted average rate of ED visits for the cohort was reduced 50% (HR 0.50; 95% confidence interval [CI] 0.47 to 0.53) during periods of receipt of community-based palliative care. This relative reduction in ED visits varied by patient factors, ranging from 43% (HR 0.57; 95% CI 0.45 to 0.74) for decedents aged 60 years and younger up to 71% (HR 0.29; 95% CI 0.18 to 0.46) for people aged 90 years and older. Decedents living in the most disadvantaged areas had a 44% (HR 0.56; 95% CI 0.44 to 0.72) reduction in ED visits when receiving community-based palliative care compared with a 60% (HR 0.40; 95% CI 0.31 to 0.53) reduction for decedents who lived in the least disadvantaged areas and received this care. The ED visit rates while patients were receiving palliative care also varied by ED visit history, partner status, and region of residence. CONCLUSION: Receipt of community-based palliative care in the last year of life was associated with a reduced rate of ED visits. The magnitude of this association was modified by patient health, as well as social and demographic factors.

Issues using linkage of hospital records and death certificate data to determine the size of a potential palliative care population.

BACKGROUND: Studies aiming to identify palliative care populations have used data from death certificates and in some cases hospital records. The size and characteristics of the identified populations can show considerable variation depending on the data sources used. It is important that service planners and researchers are aware of this. AIM: To illustrate the differences in the size and characteristics of a potential palliative care population depending on the differential use of linked hospital records and death certificate data. DESIGN: Retrospective cohort study. SETTING/PARTICIPANTS: The cohort consisted of 23,852 people aged 20 years and over who died in Western Australia between 1 January 2009 and 31 December 2010 after excluding deaths related to pregnancy or trauma. Within this cohort, the number, proportion and characteristics of people who died from one or more of 10 medical conditions considered amenable to palliative care were identified using linked hospital records and death certificate data. RESULTS: Depending on the information source(s) used, between 43% and 73% of the 23,852 people who died had a condition potentially amenable to palliative care identified. The median age at death and the sex distribution of the decedents by condition also varied with the information source. CONCLUSION: Health service planners and researchers need to be aware of the limitations when using hospital records and death certificate data to determine a potential palliative care population. The use of Emergency Department and other administrative data sources could further exacerbate this variation.

Community-based specialist palliative care is associated with reduced hospital costs for people with non-cancer conditions during the last year of life.

BACKGROUND: Community-based palliative care is associated with reduced hospital costs for people dying from cancer. It is unknown if reduced hospital costs are universal across multiple life-limiting conditions amenable to palliative care. The aim of this study was to determine if community-based palliative care provided to people dying from non-cancer conditions was associated with reduced hospital costs in the last year of life and how this compared with people dying from cancer. METHOD: A retrospective population-based cohort study of all decedents in Western Australia who died January 2009 to December 2010 from a life-limiting condition considered amenable to palliative care. Hospital costs were assigned to each day of the last year of life for each decedent with a zero cost applied to days not in hospital. Day-specific hospital costs averaged over all decedents (cohort averaged) and decedents in hospital only (inpatient averaged) were estimated. Two-part models and generalised linear models were used. RESULTS: The cohort comprised 12,764 decedents who, combined, spent 451,236 (9.7%) days of the last year of life in hospital. Overall, periods of time receiving community-based specialist palliative care were associated with a 27% decrease from A$112 (A$110-A$114) per decedent per day to $A82 (A$78-A$85) per decedent per day of CA hospital costs. Community-based specialist palliative care was also associated a reduction of inpatient averaged hospital costs of 9% (7%-10%) to A$1030 per hospitalised decedent per day. Hospital cost reductions were observed for decedents with organ failures, chronic obstructive pulmonary disease, Alzheimer's disease, Parkinson's disease and cancer but not for motor neurone disease. Cost reductions associated with community-based specialist palliative care were evident 4 months before death for decedents with cancer and by one to 2 months before death for decedents dying from other conditions. CONCLUSION: Community-based specialist palliative care was associated with hospital cost reductions across multiple life-limiting conditions.

A dyadic approach to understanding the impact of breast cancer on relationships between partners during early survivorship.

BACKGROUND: The shared impact of breast cancer for women and their male partners is emerging as an important consideration during the experience of a breast cancer diagnosis, particularly during survivorship. This study aimed to explore the experiences of women and their partners during early survivorship and contributes a range of insights into the lives of those intimately affected by breast cancer. METHODS: In-depth interviews were completed with Australian women survivors of breast cancer (n = 8) and their partners (n = 8), between six months and five years following cessation of treatment. Questions included a focus on the women and their partners' daily experiences during early survivorship, including the management of ongoing symptoms, engagement in leisure and social interests, returning to work, communicating with each other, maintenance of the current relationship and other important roles and responsibilities. Thematic analysis was employed to determine key themes arising from the dyadic accounts of women and their partners' experiences during early breast cancer survivorship. RESULTS: Women and their partners experienced many changes to their previous roles, responsibilities and relationships during early breast cancer survivorship. Couples also reported a range of communication, intimacy and sexuality concerns which greatly impacted their interactions with each other, adding further demands on the relationship. Three significant themes were determined: (1) a disconnection within the relationship - this was expressed as the woman survivor of breast cancer needing to prioritise her own needs, sometimes at the expense of her partner and the relationship; (2) reformulating the relationship - this reflects the strategies used by couples to negotiate changes within the relationship; and (3) support is needed to negotiate the future of the relationship - couples emphasised the need for additional support and resources to assist them in maintaining their relationship during early survivorship. CONCLUSION: It can be concluded that the early survivorship period represents a crucial time for both women and their partners and there are currently limited options available to meet their shared needs and preferences for support. Findings indicate that a suitable model of care underpinned by a biopsychosocial framework, access to comprehensive assessment, timely support and the provision of targeted resources are urgently needed to assist women and their partners during this critical time.

A retrospective population based cohort study of access to specialist palliative care in the last year of life: who is still missing out a decade on?

BACKGROUND: Historically, specialist palliative care has been accessed by a greater proportion of people dying with cancer compared to people with other life-limiting conditions. More recently, a variety of measures to improve access to palliative care for people dying from non-cancer conditions have been implemented. There are few rigorous population-based studies that document changes in palliative care service delivery relative to the number of patients who could benefit from such services. METHOD: A retrospective cohort study of the last year of life of persons with an underlying cause of death in 2009-10 from cancer, heart failure, renal failure, liver failure, chronic obstructive pulmonary disease, Alzheimer's disease, motor neurone disease, Parkinson's disease, Huntington's disease and/or HIV/AIDS. The proportion of decedents receiving specialist palliative care was compared to a 2000-02 cohort. Logistic regression models were used identify social and demographic factors associated with accessing specialist palliative care. RESULTS: There were 12,817 deaths included into the cohort; 7166 (56 %) from cancer, 527 (4 %) from both cancer and non-cancer conditions and 5124 (40 %) from non-cancer conditions. Overall, 46.3 % of decedents received community and/or hospital based specialist palliative care; a 3.5 % (95 % CI 2.3-4.7) increase on specialist palliative care access reported ten years earlier. The majority (69 %; n = 4928) of decedents with cancer accessed palliative care during the last year of life. Only 14 % (n = 729) of decedents with non-cancer conditions accessed specialist palliative care, however, this represented a 6.1 % (95 % CI 4.9-7.3) increase on the specialist palliative care access reported for the same decedent group ten years earlier. Compared to decedents with heart failure, increased odds of palliative care access was observed for decedents with cancer (OR 10.5; 95 % CI 9.1-12.2), renal failure (OR 1.5; 95 % CI 1.3-1.9), liver failure (OR 2.3; 95 % CI 1.7-3.3) or motor neurone disease (OR 4.5; 95 % CI 3.1-6.6). Living in major cities, being female, having a partner and living in a private residence was associated with increased odds of access to specialist palliative care. CONCLUSION: There is small but significant increase in access to specialist palliative care services in Western Australia, specifically in patients dying with non-cancer conditions.

Occupational therapy in Australian acute hospitals: A modified practice.

BACKGROUND/AIM: Ongoing changes to health-care funding Australia wide continue to influence how occupational therapists practise in acute hospitals. This study describes the practice challenges experienced by Western Australian acute care occupational therapists. Then, it explores if and how acute care occupational therapists are modifying their practice in response to these practice changes. METHODOLOGY: This study used a qualitative grounded theory approach. Semi-structured interviews were completed with 13 purposively selected acute care occupational therapists from four Western Australian metropolitan hospitals. Data were analysed using a constant comparative method to provide detailed descriptions of acute care occupational therapy practice and to generate theory. FINDINGS: Five conceptual categories were developed. The first two addressed practice challenges: pragmatic organisational influences on client care and establishing a professional identity within the multidisciplinary team. Three categories related to therapist responses are as follows: becoming the client advocate, being the facilitator and applying clinical reasoning. Finally, modified practice was identified as the core category which explains the process whereby acute care occupational therapists are ensuring they remain relevant and authentic in the acute care context. CONCLUSION: Western Australian acute care occupational therapists are practising in a highly complex health context that presents many challenges. They are responding by using a modified form of practice that ensures occupational therapy skills remain relevant within the narrow confines of this health setting.

The Value of a Gardening Service for the Frail Elderly and People With a Disability Living in the Community.

Little is known about the significance of gardening services for frail elderly people. This study explored the value of a gardening service for frail older people and people with a disability living in the community. Using qualitative and quantitative data collected from pre-gardening (n = 38) and post-gardening service delivery interviews (n = 35) and the Housing Enabler, the value of a gardening service was examined. Findings suggest that the service had a positive impact on the independence and emotional well-being of frail aged people and younger people with a functional disability, with little impact on physical health. Results indicate that gardening services should be fundamental to planning for these populations to remain or return to living in the community.

Community-based palliative care is associated with reduced emergency department use by people with dementia in their last year of life: A retrospective cohort study.

OBJECTIVE: To describe patterns in the use of hospital emergency departments in the last year of life by people who died with dementia and whether this was modified by use of community-based palliative care. DESIGN: Retrospective population-based cohort study of people in their last year of life. Time-to-event analyses were performed using cumulative hazard functions and flexible parametric proportional hazards regression models. SETTING/PARTICIPANTS: All people living in Western Australia who died with dementia in the 2-year period 1 January 2009 to 31 December 2010 (dementia cohort; N = 5261). A comparative cohort of decedents without dementia who died from other conditions amenable to palliative care (N = 2685). RESULTS: More than 70% of both the dementia and comparative cohorts attended hospital emergency departments in the last year of life. Only 6% of the dementia cohort used community-based palliative care compared to 26% of the comparative cohort. Decedents with dementia who were not receiving community-based palliative care attended hospital emergency departments more frequently than people receiving community-based palliative care. The magnitude of the increased rate of emergency department visits varied over the last year of life from 1.4 (95% confidence interval: 1.1-1.9) times more often in the first 3 months of follow-up to 6.7 (95% confidence interval: 4.7-9.6) times more frequently in the weeks immediately preceding death. CONCLUSIONS: Community-based palliative care of people who die with or of dementia is relatively infrequent but associated with significant reductions in hospital emergency department use in the last year of life.

Occupational therapy practice in acute physical hospital settings: Evidence from a scoping review.

BACKGROUND/AIM: Increased accountability and growing fiscal limitations in global health care continue to challenge how occupational therapy practices are undertaken. Little is known about how these changes affect current practice in acute hospital settings. This article reviews the relevant literature to further understanding of occupational therapy practice in acute physical hospital settings. METHOD: A scoping review of five electronic databases was completed using the keywords Occupational therapy, acute hospital settings/acute physical hospital settings, acute care setting/acute care hospital setting, general medicine/general medical wards, occupational therapy service provision/teaching hospitals/tertiary care hospitals. Criteria were applied to determine suitability for inclusion and the articles were analysed to uncover key themes. RESULTS: In total 34 publications were included in the review. Analysis of the publications revealed four themes: (1) Comparisons between the practice of novice and experienced occupational therapists in acute care (2) Occupational therapists and the discharge planning process (3) Role of occupation in the acute care setting and (4) Personal skills needed and organisation factors affecting acute care practice. CONCLUSION: The current literature has highlighted the challenges occupational therapists face in practicing within an acute setting. Findings from this review enhance understanding of how occupational therapy department managers and educators can best support staff that practise in acute hospital settings.

Change in carers' activities after the death of their partners.

PURPOSE: When a person is dying and during bereavement, family members often put their lives on hold to provide full-time care. Meaningful activities may be curtailed or forgotten. This study described the activities that changed between pre- and post-caring, and what factors assisted carers to re-engage in activities 2 years following the death of their partners. METHODS: A mixed methods design included a cross-sectional survey and face-to-face interviews. The study occurred in 2009 with 40 females that cared for a partner who had subsequently died of cancer 2 years previously. Engagement in community and other activities was determined through use of the Activity Card Sort-Australia and semi-structured interviews. The SF-36v2 measured physical and mental health status, and perceived social support was measured using the Multidimensional Scale of Perceived Social Support. RESULTS: Most carers in our study were more engaged in household activities post-caring compared to their pre-caring activities, but had decreased social and leisure activities. Living as a single person meant they had taken on new roles and responsibilities. Leisure and social activities previously associated with subjective well-being and health were reduced or lost. Greater social support contributed to a higher retention of activities post-caring. CONCLUSIONS: Retention of activities could be facilitated by participation in community services, recreational groups and other support and interest groups, both during and after caring.

Hospital and emergency department use in the last year of life: a baseline for future modifications to end-of-life care.

OBJECTIVES: To describe hospital and emergency department use in the last year of life by people for whom death from cancer or one of another nine conditions was an expected outcome. DESIGN, PARTICIPANTS AND SETTING: Retrospective cross-sectional study based on death registrations and morbidity data for 1071 Western Australians who died between 1 August 2005 and 30 June 2006. Decedents had an informal primary carer, did not live in residential aged care and died of a condition amenable to palliative care. MAIN OUTCOME MEASURES: Total number of hospital admissions; emergency presentations (with and without hospital admission); days spent in hospital by age group at death, sex, metropolitan or rural place of residence and cancer versus non-cancer diagnosis; proportion in hospital on any day in the last 365 days of life; time points of change in the last 365 days of life at which there was an increasing proportion of hospital admissions for those with cancer and non-cancer conditions. RESULTS: All but 4% of the decedents spent time in hospital with a marked increase in hospitalisations in the last 108 days of life for people who died of cancer and the last 83 days of life for people who died of non-cancer conditions. Those with cancer spent less time in hospital than those with other diagnoses. Seventy per cent of the cohort had at least one emergency presentation. On the last day of life, 61.5% of people were in hospital and 4.0% had been seen in emergency departments. CONCLUSIONS: Western Australian hospitals currently provide extensive and progressively greater care at the end of life. Identifying patterns of emergency and inpatient use for various disease trajectories will assist in the planning of appropriate services for people where death is an expected outcome.

Is occupation missing from occupational therapy in palliative care?

BACKGROUND/AIM: The role of occupational therapists in palliative care is largely undocumented in Western Australia (WA). Little is known about the services occupational therapists provide or the needs of people who are dying and their carers in relation to these services. The aims of this study were as follows. First, to determine the number of occupational therapists employed and the range of services they provide in palliative care in WA. Second, with particular reference to self care, leisure, productive roles and occupations, to explore the daily experiences of people who were dying as well as their primary carers to determine the services that might be offered by occupational therapy to this population. METHODS: Semi-structured interviews were used to gather information from carers (n=10 metro, n=4 rural) and occupational therapists (n = 13 metro, n = 5 rural). Data were analysed qualitatively using grounded theory to develop categories. Themes were defined using the constant comparison method. RESULTS: Four themes emerged that impacted people who were dying and their carers. These were; ongoing disengagement from usual activities with resultant occupational deprivation; disempowerment of both people who are dying and their carers within palliative care services; 'occupation' not being addressed adequately in palliative care, and occupational therapists experience frustration with limited opportunities to contribute to the care of people who are dying. CONCLUSIONS: This paper highlights gaps in service provision in WA to people who are dying and their carers. It provides direction for occupational therapists to offer an occupation-focussed approach to the care of this vulnerable group.

Comparing three postoperative treatment protocols for extensor tendon repair in zones V and VI of the hand.

OBJECTIVE: This pilot study compared the effectiveness of 3 postoperative rehabilitation protocols for patients with Zones V and VI extensor tendon lacerations. METHOD: Twenty-seven patients were recruited from 3 sites and randomly assigned to 1 of 3 established treatment protocols: immobilization, early passive motion (EPM), and early active motion (EAM). Outcome measures were collected at 3, 6, and 12 wk after treatment and included total active motion (TAM). RESULTS: At the end of Week 12, data on 24 injured digits of 18 patients were available for analysis. When data at Weeks 3, 6, and 12 were compared, patients in all groups showed steady improvement in TAM, but digits under the EAM treatment improved to a greater extent over time (F[2, 46] = 75.6, p < .001). CONCLUSION: Patients with Zones V and VI extensor tendon injuries treated with the EAM protocol recovered range of motion more rapidly.

Factors associated with the academic success of first year health science students.

The academic success of students is a priority for all universities. This study identifies factors associated with first year academic success (performance and retention) that can be used to improve the quality of the student learning experience. A retrospective cohort study was conducted with a census of all 381 full time students enrolled in the Bachelor of Health Science at The University of Western Australia since the inception of the course in the year 2000. Factors found to be associated with successful academic performance were high matriculation score, female sex, non-Indigenous status, attendance at a government secondary school, upfront payment of university fees and completion of secondary school English Literature. The most influential factor on first year academic performance was a high matriculation score. Retention into second year was found to be influenced by participation in the university mentor scheme, non-Indigenous status and first year university marks. The factor of most influence on student retention was first year university marks. Valuable information about the performance and retention of first year Bachelor of Health Science students is provided in this study which is relevant to the operational priorities of any university.

The implications of women's activity limitations and role disruptions during breast cancer survivorship.

Early survivorship is a time of critical transition for women survivors of breast cancer as they attempt to resume functional activities and important life roles. This study aimed to explore the challenges of women and their partners as they attempted to resume activities and roles, identify unmet needs and make recommendations regarding a suitable framework to support women and partners to recommence valued activities and important roles during early survivorship. Qualitative methods utilising in-depth interviews of women (n = 18) and their partners (n = 8), and two focus groups (n = 10) were completed in Perth, Western Australia, between June 2014 and April 2015. These methods were used to facilitate women and partners' views regarding the resumption of previously meaningful activities and important life roles during early survivorship. Questions addressed their individual and shared experiences concerning self-care, leisure, social and productive activities and important roles. Thematic analysis was employed to determine themes. Women and partners reported significant impact on their ability to engage in valued activities, resulting in changes to participation in meaningful roles. Three themes were determined: (1) ambiguity regarding survivorship prevents resumption of activities and previous roles, (2) breast cancer continues to impact a couples' relationship during survivorship, and (3) support is needed to assist women and partners to resume activities and important roles. This research provides evidence suggesting that the ongoing symptoms of breast cancer treatment continue to impact many women and their partners, as they attempt to resume functional activities and important life roles during early survivorship. Disruption to these valued activities and roles may influence women and their partner's health and well-being during early survivorship and extend beyond this period. Rehabilitation following cessation of treatment could be offered as required to facilitate access to multi-disciplinary services and supports for both individuals and couples.