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This paper sets out the Collaborative Service Design Playbook, to guide planning, design, and implementation of co-created health services. Successful health service development and implementation is best guided by theoretically informed approaches; however, organisations often lack design and implementation know-how and have difficulty applying it. This study seeks to improve health service design and potential for scale-up by proposing a tool to guide an end-to-end process, drawing together service design, co-design, and implementation science; and exploring the tool's feasibility to establish a sustainable service solution developed with participants and experts that is scalable and sustainable. The Collaborative Service Design Playbook phases include, (1) Define the opportunity and initiatives, (2) Design the concept and prototype, (3) Deliver to scale and evaluate; and (4) Optimise to transform and sustain. This paper has implications for health marketing through providing an end-to-end approach with phased guidance for health service development, implementation, and scale up. [ABSTRACT FROM AUTHOR]

An increasing focus in aged care policy is supporting older people to age at home. However, there is little recognition of the health and independence of older private renters living in a space they do not own or control. This paper draws on in-depth interviews and assessments undertaken in the homes of 27 older tenants in the Brisbane environs aiming to understand how renting privately influenced their ability to meet their basic needs. An analysis of the findings highlights the disadvantage experienced by many older private renters. Most older private renters were unable to meet their basic needs given unaffordable rent whilst reliant on the aged pension. Further, with limited access to community aged care including home modifications, the health and independence of older private renters was found to be at risk. IMPLICATIONS Community aged care is difficult for older private renters to utilise in Australia, with unaffordable services and tenancy law limiting access to community aged care services including home modifications. It is vital social workers advocate for the community aged care needs of older private renters in practice and policy settings. [ABSTRACT FROM AUTHOR]

Participating, learning music and performing are key factors to joining music ensembles. This paper situates itself in Melbourne (Australia) and forms part of my research project Promoting relationships through sound in formal and informal settings where I investigated why members of an instrumental group met to share their music making and practice and how it contributes to their quality of life. I draw on a phenomenological viewpoint from questionnaire and interview data undertaken in May 2018 with the ensemble players. Data were analyzed using Interpretative Phenomenological Analysis that is reported thematically under three broad headings: Music learning for self as a community, wellbeing and spirituality, and sharing music for the community. The findings show that staying active as older adults (50+) contributed to members sense of wellbeing as they continued to engage with music learning and performance. Playing for personal growth contributed positively to members quality of life as a serious leisure activity. Generalization to other instrumental community groups in Australia cannot be made. Further research is required to support the perceived meanings and benefits of planning, preparing, practicing and performing as older musicians. [ABSTRACT FROM AUTHOR]

In responding to the requirements of the sustainable development movement, many retirement village developers endeavor to provide a sustainable living environment for their residents. However, this cannot transpire until a thorough understanding of retirement village residents' preferences for various features of a sustainable living environment is known. The aim of this paper, therefore, is to reveal retirement village residents' perceptions of the importance of 23 sustainable living environment features through a questionnaire survey of 81 residents from 15 retirement villages. The survey results reveal that independent and convenient living, justice and fairness, being respected and valued, and privacy protection are the most preferred sustainability features, all of which are in the triple bottom line dimension of social sustainability, whereas capital gain sharing, community diversity, and care and service provision are the least important. In addition, it is found that the residents of different ages, gender, living experience, and retirement village nature have significantly different preferences toward various sustainability features. The findings of this study contribute to the management and development of sustainable retirement villages, which will eventually lead to an improved quality of life for older people. [ABSTRACT FROM AUTHOR]

This two-year (2016–2018) study aimed to identify what a good life is for Aboriginal people with disability in remote Central Australia and how service providers can support them to achieve a good life. This paper presents the findings that relate to barriers to delivering services for Aboriginal people with disability. In-depth interviews and focus groups were held with Aboriginal people with disability and their carers aged at least 18 years from the Ngaanyatjarra Pitjantjatjara Yankunytjatjara (NPY) Lands and community organisations providing services there. The data were analysed using thematic analysis. There were 109 participants, of whom 47 were workers in service provider organisations and 62 were Aboriginal people. From the data, barriers to delivering services to support Aboriginal people to live a good life and solutions to overcome the barriers, were identified and described under the headings of environmental barriers and systemic issues. We discuss the policy implications of these findings with regard to addressing Indigenous disadvantage and how governments, service providers, communities, and Aboriginal people with disability and their families can work in partnership to address these barriers. Indigenous people with disability living in remote and very remote communities experience significant access and equity barriers to culturally responsive services that enable them to live a socially and culturally engaged life. Localised government and service provider disability policy approaches in Indigenous communities need to focus on both environmental and systemic issues. Greater investment in local remote communities is required to build the capacity of Indigenous families to support Aboriginal people with a disability to live a culturally and socially included life. [ABSTRACT FROM AUTHOR]

Dystonia is a neurological disorder characterised by involuntary muscle contractions. Pain is the primary non-motor symptom, and limited studies have investigated how dystonic pain is experienced. This study aimed to investigate how people with isolated dystonia describe their pain and compare across subgroups of dystonia. Anonymous online survey via social media asking participants to describe their pain in their own words, complete the McGill Pain Questionnaire (MPQ), and answer demographic questions. Thematic analysis identified common themes and frequencies were calculated for demographic and MPQ data. One-hundred and sixty-five respondents were included (mean age 51 years, 85% female). Thematic analysis identified four major themes "Physical sensations", "Temporal features", "Destruction", "Impact on life" with several sub-themes. The most chosen MPQ descriptor was "exhausting" followed by "tight," "sharp," "pulling," and "aching". The most common descriptors showed similar prevalence across subgroups of dystonia. As no objective tests for pain exist, pain sufferers must use language to describe their pain experience. People with isolated dystonia used sensory words combined with metaphorical language to detail temporal features of pain, as well as destructive internal battles or feelings of external forces acting upon them, and the significant toll pain has on everyday life. Pain is a common and debilitating non-motor symptom for people living with dystonia and should be discussed in a persons treatment plan. Pain sufferers use language to discuss their pain experience with others and report they don't feel well understood by others including health professionals. People with dystonic pain commonly described physical sensations, temporal features, destructive forces, and the impact on life caused by their pain. Findings suggest the experience of pain with dystonia is varied and better pain management options for people with dystonia are needed. [ABSTRACT FROM AUTHOR]

Cerebral palsy is a leading cause of physical impairment worldwide. Community support and acceptance influence the opportunities people with cerebral palsy have to participate in all areas of life, but very little is known about the general community's understanding of cerebral palsy. This study investigated knowledge and perceptions of cerebral palsy in the Australian community. A sample of 1,217 adults responded to an open-ended question: 'What is the first thing that comes to mind when you think about cerebral palsy?' Almost half of the sample indicated some awareness that cerebral palsy is a physical disability involving difficulties with muscle control, movement and coordination; however, 20% of the participants had no knowledge or stated incorrect facts. Wheelchairs were the first thing that came to mind for 10% of the sample. Few participants mentioned common comorbidities such as cognitive or communication difficulties. A substantial minority of responses (8%) were characterised by stigma or insensitivity. Although many people in the general community appear to have accurate knowledge about cerebral palsy, misperceptions and stereotypes are likely to impact on quality of life and personal well-being for individuals with cerebral palsy and their families. [ABSTRACT FROM AUTHOR]

Australia's Royal Commission into Aged Care Quality and Safety has reported abuses, neglect and a level of systemic apathy and unwillingness to innovate across the nation's aged care sector. Isolation and loneliness stand out as the sector's two most pernicious problems which the current pandemic has only exacerbated. To attempt to ameliorate the situation, the author created a fieldwork intervention that puts undergraduate students into aged care facilities to work with residents on discussing, transcribing, editing and publishing the resident's biography. The "Biography Project" provides much needed contact and connection for residents but also touches on the quality of relationships with family, friends and care staff and supports intergenerational connections for undergraduate students. The article describes the project and its outcomes for students in the hopes of providing a model for geriatric education that could be implemented elsewhere. [ABSTRACT FROM AUTHOR]

Bipolar disorder (BD) is associated with elevated rates of eating disorders (EDs), but the nature and impact of specific ED features are unclear. This study sought to identify which ED features are common in BD, and whether these relate to quality of life (QoL) impairment and body mass index (BMI). A clinical sample of 73 adults with BD completed self-report measures of health, ED features, emotion regulation ability, impulsivity, and QoL. Binge eating (45%), excessive dietary restriction (39%), overvaluation of weight/shape (51%), purging (16%) and driven exercise (27%) were common, and associated with a poorer clinical picture, including poorer QoL and poorer emotion regulation. Furthermore, regular binge eating episodes explained a significant proportion of variance in QoL impairment after controlling for other significant predictors. The best predictors of BMI were number of medical conditions, impulsivity and positive beliefs about binge eating. ED features that may not meet criteria for a fully diagnosable ED – particularly overvaluation of weight/shape and binge eating – warrant greater attention, as they may still significantly worsen QoL. Future research should focus on modifying existing psychological interventions to better target ED features among individuals with BD and thereby improve clinical outcomes. [ABSTRACT FROM AUTHOR]

A key goal of the NDIS, the federally funding individualised funding scheme for people with a disability in Australia, is to facilitate an ordinary life for them in their communities. This study examined family perceptions of the contribution NDIS made to create an ordinary life for their adult member with intellectual disability. Semi-structured interviews were conducted with 20 families. The families found this to be a complex process in that while the move to the new funding system supported some elements of a life more aligned to that of similar aged peers, there were also a number of missed opportunities. The opportunities that were available to the adult with intellectual disability were affected by stakeholders' differing views of disability. NDIS presents an opportunity to continue to build towards enabling people with a disability to make their own choices and, with support when needed, build a life similar to their peers. The National Disability Insurance Scheme (NDIS) is the new federal individualised funding scheme for people with a disability in Australia. The National Disability Insurance Scheme gives people with a disability their own funding. This helps them to be able to make their own choices about what they want to do and what support they need. The National Disability Insurance Scheme hopes to support an ordinary life for people with a disability in their communities. This study investigated how it is working for adults with intellectual disability. It showed that it is a complicated process. Some aspects of the National Disability Insurance Scheme are working well but there are missed opportunities. There is a need to keep talking about how people think about disability so we can understand the impact different views have on the National Disability Insurance Scheme planning and outcomes for adults with intellectual disability. [ABSTRACT FROM AUTHOR]

Social and financial remittances from the Australian Seasonal Worker Programme (SWP) have transformed the livelihood capabilities of participating households from Timor-Leste. Timorese workers generally participate in SWP for a six-month period, with many returning for subsequent seasons. Qualitative, multi-sited research investigated the livelihood strategies of 50 Timorese worker households over a three-year period. Their net earnings averaged between 4000 and 8000 USD per season, varying with the type of employment, living costs and their ability to save. Remittances assist in strengthening livelihoods by consolidating financial, physical, social, natural and human capital, improving the quality of life for returning workers, their households and communities. Remittances maintain and consolidate social relationships, and enable investments in entrepreneurial activities, education and house building. Migrant workers exhibited a strong preference for developing social capital, with many investments in other livelihood assets underpinned by a desire to strengthen social relationships, reflecting beliefs that this enhances livelihood resilience. While remittances have made greater direct contributions to livelihoods than economic production within Timor-Leste, at least for participating households and their immediate networks, this expenditure on social capital also suggests the broader structural limitations of using remittances in a 'productive' way (through capital accumulation) within labour-sending countries. [ABSTRACT FROM AUTHOR]

For people with autism spectrum disorder (ASD), the risk of mental illness, including suicidality, has a higher prevalence than the general population. This scoping review explored how people with ASD access suicide hotlines/crisis support services; and current approaches to delivering mental health services (MHS) to people with ASD. A search identified 28 studies meeting the selection criteria with analysis revealing four key findings. The support received by the person with ASD influenced how they accessed MHS; people often encounter barriers to accessing MHS; a separation exists between autism and MHS; and no studies on accessing or delivering MHS through crisis hotlines. The presence of such autism-specific crisis hotlines and the dearth of studies suggest a void in the existing research. [ABSTRACT FROM AUTHOR]

To extend the authors' previous research by investigating the maintenance of work performance over time and the long-term experience of employment following traumatic brain injury (TBI). Semi-structured interviews were conducted with a sample of 72 individuals with predominantly severe TBI, up to 10-years post-injury. Thematic analysis of transcribed interviews was conducted. Four key themes were identified: brain injury influences on work performance and long-term employment; factors optimising long-term employment; and need for compromise and acceptance, which all impacted the final theme, quality of life outcome. While TBI-related difficulties such as fatigue, cognitive, and emotional difficulties still impacted work many years post-injury, work modifications and employer and vocational rehabilitation (VR) support were important factors optimising long-term employment. The timing of return to work (RTW) was also an important and potentially modifiable factor influencing work performance, which appeared to have long-term effects on the maintenance of employment. Support for acceptance of altered career goals is needed. Findings support the need for early VR to facilitate employer contact, to maximise adjustment and preparation time before RTW, to educate both employees and employers and to implement work modifications to support continuing employment after TBI. The maintenance of employment following TBI is of critical importance for financial independence, psychological and social well-being, and improved quality of life. Injury-related difficulties still impact work performance many years after injury requiring individuals with TBI to continue working in modified roles and for reduced hours over the long-term. Ongoing VR and employer support is needed to facilitate long-term work modifications and compensatory strategies to support work performance. Early VR involvement to facilitate employer contact and maximise adjustment and preparation time before returning to work is necessary to avoid the negative and potentially dire consequences of returning too early. Psychological support to facilitate acceptance of role changes and career compromises is also important. [ABSTRACT FROM AUTHOR]

Self-management can lead to increased self-efficacy and improved quality of life for individuals with chronic conditions; however, there is little research exploring how self-management approaches can be used for chronic communication disorders, such as aphasia. Modifications to self-management approaches would be required to accommodate for aphasia; therefore, the input of people with aphasia (PwA) should be sought. The aims of the present study were: (1) To investigate and document the experiences and perspectives of PwA regarding self-management; (2) To explore how technology can be used to support aphasia self-management. In-depth, semi-structured interviews were conducted with 26 PwA living in Australia. Qualitative content analysis was used to analyse interview data. Analysis resulted in six themes: (1) In self-management, PwA take control of life with aphasia and assume responsibility for engaging in opportunities to improve overall communication; (2) Community aphasia groups are important enablers of self-management because they facilitate peer support; (3) Communication partners (CPs) provide multifaceted support in aphasia self-management; (4) SLPs provide integrated support and coordination in aphasia self-management; (5) Technology supports PwA to self-manage speech therapy and communication in daily life; (6) Psychological and physical health issues and societal factors may impact aphasia self-management abilities. From the perspective of PwA, aphasia self-management involves enhancing skills enabling communication and life participation. PwA are central to aphasia self-management, with support provided by CPs, peers, and SLPs. Technology has a range of applications in aphasia self-management. PwA identified potential personal and contextual barriers that may impact self-management. For people with aphasia, engaging in conversation and social interaction are primary means of managing/improving communicative life participation; therefore, this should be a key focus of aphasia self-management programs. Aphasia self-management approaches should maximise the use of available support and provide tailored information, education, and training in the area of self-management to key stakeholders (people with aphasia, communication partners, and speech-language pathologists). People with aphasia should be supported to use technology for aphasia self-management, encompassing communication specific and daily life use. People with aphasia should be heavily involved in the development of structured aphasia self-management approaches. [ABSTRACT FROM AUTHOR]

This study determined changes in multiple aspects of mental health and wellbeing in newly admitted nursing home residents, and identified risk and protective factors. Participants were 204 residents recently admitted to one of 42 nursing homes in Melbourne, Australia. A subgroup of 82 participants were followed up eight months post-admission. Depression, anxiety, stress, adjustment, and quality of life were assessed at baseline and follow-up. Predictive factors (demographics, health, transition factors, nursing home characteristics) were examined in multiple regression analyses. Rates of depression and anxiety were high at both baseline and follow-up. Low self-rated health and medical comorbidity predicted poor wellbeing at baseline. Higher perceived control in the relocation to the nursing home and engagement in meaningful activities were associated with better post-admission outcomes. Baseline psychotropic medication use predicted lower anxiety at follow-up but did not impact depressive symptoms. There were no significant changes in mental health and wellbeing from one to eight months post-admission. The negative effect of residing in a for-profit nursing home requires further investigation. Individual activity scheduling and an opportunity to participate in relocation decision-making and planning may support resident wellbeing post-admission. [ABSTRACT FROM AUTHOR]

To provide evidence-based guidance specific to allied health and nursing practice for the assessment and management of individuals with Duchenne muscular dystrophy (DMD). Thirteen key focus areas were identified in consultation with health professionals and consumer advocacy groups. A series of systematic literature reviews were conducted to identify assessment and management strategies for each key focus area. A consensus process using modified Delphi methodology, including an Australia-New Zealand expert consensus meeting, was conducted. Recommendations underwent consultative review with key groups before being finalised and prepared for dissemination. This clinical practice guideline (CPG) generated 19 evidence-based recommendations, 117 consensus-based recommendations and five research recommendations across the 13 focus areas to inform allied health assessment and management of individuals with DMD. The resulting recommendations can be used in conjunction with existing medical CPGs to improve, standardise and advocate for allied health and rehabilitation care in DMD. The process used here may be useful for the development of CPGs in other rare diseases. Implementation-ready evidence-based statements to guide clinical care of individuals with DMD are provided with the potential to improve participation, function in the community and quality of life. A model for developing best practice statements for other rare neurological diseases is described. Allied health and nursing health professionals should focus research efforts to generate quality evidence to support rehabilitation practice. [ABSTRACT FROM AUTHOR]

Previous studies have demonstrated inconsistency in the effectiveness of staff training programs in consumer directed care (CDC) as a means of enhancing the quality of life (QoL) of residents. The aim of this study was to investigate why this might be the case. We analyzed disaggregated cluster-by-cluster resident QoL outcomes after nursing home staff completed a CDC training program. In total, 33 nursing homes (11 clusters) participated in the study. As with previous studies, the outcomes across nursing homes were inconsistent – QoL improved at some sites but at many it remained stable or declined. Analysis of facilitator notes from the most and least successful clusters indicated that a lack of organizational support, for both the training and subsequent practice of CDC, was potentially the key barrier to effective implementation of training and so improvement in resident QoL. These findings demonstrate that all levels of aged care organizations – on the floor staff, managers and senior staff – need to fully support a CDC model of care to optimize outcomes for residents. Staff require training in CDC as well as long-term culture change within the nursing home so that training can be translated into practice. [ABSTRACT FROM AUTHOR]

Objective: To provide a critical analysis of evidence describing the implementation and effectiveness of cranberry products for the prevention of urinary tract infections in the setting of residential aged care. Methods: A critical analysis of the literature. Results: The current evidence indicates that cranberry products decrease the occurrence of urinary tract infections in aged care residents who are likely to benefit from the use of cranberry products as a preventative measure; however, some of the results were limited and contradictory, because of gaps and insufficient research in relation to the active ingredients of cranberries – proanthocyanins. Conclusion: This critical analysis demonstrates benefits in the use of cranberry products in the prevention of urinary tract infections for residents of aged care facilities. Further research and education on preventative measures could potentially lower the use of antibiotics and the incidence of urinary tract infections in residential aged care. [ABSTRACT FROM AUTHOR]

Purpose: To examine (1) the association between low language (LL) and caregiver's health-related quality of life (HRQoL), (2) whether persistent LL affects caregiver's HRQoL and (3) whether child social-emotional-behavioural (SEB) difficulties attenuates the association between LL and caregiver's HRQoL. Method: Data were from the Early Language in Victoria Study (ELVS) and the Longitudinal Study of Australian Children (LSAC). Caregiver's HRQoL was measured using the EuroQoL-5 dimensions and the Assessment of Quality of Life-8 dimensions. Language ability was determined using the Clinical Evaluation of Language Fundamentals (CELF)-Preschool-2nd or 4th edition (ELVS) and the Peabody Picture Vocabulary Test-3rd edition or CELF-4 recalling sentences subscale (LSAC). Child SEB difficulties were measured using the Strengths and Difficulties Questionnaire. Multivariable linear regression was used for the analysis. Result: At 11–12 years, an association between LL and reduced caregiver's HRQoL was found in LSAC, but not in ELVS. Persistent LL from 4–11 years seemed to not affect caregivers' HRQoL in either cohort. Child SEB difficulties attenuated the association between caregiver's HRQoL and LL. Conclusion: Both LL and SEB difficulties contributed to reduced caregiver's HRQoL at children age 11–12 years. Interventions supporting children with LL should consider caregiver's well-being in provision of care that meets families' needs. [ABSTRACT FROM AUTHOR]

Engagement in everyday activities has been identified as an important element in personal recovery from the experience of mental illness and a key priority for service-users. This study explored the role of everyday activities in recovery. This study used a photovoice participatory research. Twenty-one participants experiencing mental illness were recruited from a community-managed mental health service in Melbourne, Australia. Data collection included individual interviews and photovoice courses. The courses included group discussions and required participants to take photographs about their everyday activities that support recovery. A lived experience co-facilitator contributed to development and delivery of the course. The interviews and group discussions were transcribed verbatim and analysed using constant comparative methods. Recovery as a "journey of living well" was identified as the central theme that encompasses three interlinked categories: (1) living a life on hold; (2) choosing to recover; and (3) learning and navigating strategies. The findings suggest that recovery involves a range of experiences embedded in people's everyday lives. Recovery-oriented practice should provide opportunities for engagement in meaningful activities, to help consumers identify their potential and strategies to live well, and to adopt co-production at all levels. [ABSTRACT FROM AUTHOR]

Lesbian women and gay men are at greater risk of post-traumatic stress disorder (PTSD) than heterosexual people, however few studies have examined PTSD in older lesbian women and gay men. This study examined predictors of having ever been diagnosed with PTSD, as well as relationships to current quality of life, among 756 lesbian women and gay men aged 60 years and older in Australia. Participants were surveyed on their sociodemographic characteristics, experiences of sexual orientation discrimination over their lifetime, whether they had ever been diagnosed with PTSD, whether they were currently receiving treatment for PTSD, and their current quality of life. After adjusting for sociodemographic variables, participants who reported having a PTSD diagnosis (11.2%) had significantly more frequent experiences of discrimination over their lifetime and were significantly less likely to currently be in a relationship. Older lesbian women were significantly more likely than older gay men to report ever having had a PTSD diagnosis. Additionally, having ever been diagnosed with PTSD significantly predicted current poorer quality of life. These findings suggest that a history of PTSD among older lesbian women and gay men is linked to experiences of discrimination and other factors, with associated links to current quality of life. [ABSTRACT FROM AUTHOR]

A recent general population study of Chew and Spit (CHSP) behavior in adults found a 0.4% prevalence, predominantly in females. The current study explores this further by examining the same phenomenon in secondary-school aged adolescents. This study also explores the relationship between CHSP and other demographic and eating disorder (ED) features in 5111 adolescents (11-to-19 years of age) from 13 schools in New South Wales, Australia. Participants completed measures of ED symptoms and behaviors and change to impairment with two components: psychological distress (K-10) and health related quality of life (HRQoL; PedsQL). CHSP was found to have a 12.2% (95% CI 0.114, 0.132]) point-prevalence rate. Participants who indicated engaging in CHSP reported significantly higher levels of psychological distress (K-10) and lower HRQoL scores (PedsQL) compared to those that did not report CHSP. There was a dose-response relationship between CHSP frequency, psychological distress and HRQoL physical scores but not for HRQoL emotional and HRQoL social scores. Participants who reported regular CHSP were more likely to be female, younger, and to engage in compensatory behaviors such as purging. The high frequency of CHSP behavior in adolescents with disordered eating could suggest that CHSP should be considered in routine ED screening practices. Future studies may examine how to treat CHSP or investigate more focused treatment approaches, in order to target the behavior of CHSP more directly. [ABSTRACT FROM AUTHOR]