Longitudinal effects of time since injury and age at injury on outcomes of people with spinal cord injury in Queensland, Australia.

STUDY DESIGN: Longitudinal cohort study. OBJECTIVES: To investigate the longitudinal effects of time since injury and age at injury on outcomes of quality of life, physical function, secondary conditions and participation, in people with traumatic spinal cord injury (SCI). SETTING: Community resident people with spinal cord injury in Queensland, Australia. METHODS: A baseline sample of 270 people with SCI was recruited. Telephone surveys on measures of quality of life (WHOQOL-Bref), secondary conditions (Secondary Conditions Surveillance Instrument, subset), physical functioning (Functional Independence Measure motor subscale) and participation (Community Integration Measure) were conducted each year between 2004 and 2008, and again in 2018. Random-effect within-between models were used to determine the effect of time since injury and age at injury on each outcome variable. Inverse probability-of-censoring weights were used to correct for selection bias. RESULTS: There was an effect of time since injury on secondary conditions, with a one-year change associated with 9% higher odds of having worse Secondary Conditions Surveillance Instrument scores (odds ratio = 1.09, 95% confidence interval = 1.02, 1.17; p = 0.006). We did not find any evidence of a time since injury effect on quality of life, physical function, or participation. Similarly, we did not find any evidence of an age at injury effect on any outcome variable. CONCLUSIONS: Secondary conditions may increase with longer time since injury among people with SCI, suggesting appropriate formal and informal supports are required to minimise the impact of these emerging health problems as individuals age.

Responding to the 'thin' markets of rural and remote disability services. Quantitative and spatial analysis is part of the picture.

Policymakers, funding bodies and service provider agencies require objective indicators to ensure quality, equity and access. We sought to depict the availability of rural and remote allied health and disability services in Queensland using one such indicator (spatial analysis) to explore concepts related to 'thin' markets, including market sufficiency and market diversity. Our findings suggested, counter-intuitively, that more remote settings had greater disability service sufficiency and diversity than larger regional centres. While on careful interpretation this face-value observation can be rationalised, it can also be used to influence decision making to the detriment of remote area consumers and communities. Most importantly, it does not adequately incorporate consumer, community and service provider realities in remote areas. This led us to consider additional factors that should routinely be acknowledged to broaden planning for disability services in rural and remote settings. We suggest a number of additional considerations that should also inform policy, funding and service planning decisions. The challenge facing all stakeholders is to develop new indicators that are meaningfully reflective of the realities of rural and remote consumers, families, communities and service providers, as well as market realities.

Living with Dysphagia in the Community: Caregivers "do whatever it takes."

The psychological and psychosocial impacts of dysphagia on patients are well documented, however, caregiver perspectives have received limited attention and findings have been predominantly in the head and neck cancer population. The aim of this study was to understand the experience of supporting a person with dysphagia of varying aetiologies in the community from the caregiver perspective. Using a qualitative descriptive approach grounded in phenomenology, caregivers of a person with dysphagia living at home were interviewed (n = 15). Thematic analysis revealed an overarching theme of "You do whatever it takes," describing the caregiver experience of supporting a family member/friend with dysphagia at home. This theme was underpinned by three subthemes where caregivers described (1) being a caregiver; (2) support networks; and (3) practicalities of living with dysphagia. Caregivers voiced a range of pertinent issues experienced when caring for a family member/friend with dysphagia including how personal attributes and life experience impact the caregiver role. Demonstrated through the practical and emotional supports caregivers provided, it was apparent they are instrumental in supporting a family member/friend with dysphagia to live at home and in the community successfully. Through understanding the caregiver experience, health professionals will be in a better position to involve and support caregivers who play a vital role in those living with dysphagia in the community. Incorporating caregivers as direct recipients of dysphagia services will ensure the practical and psychosocial needs of caregivers are addressed, enabling optimal care for people with dysphagia living at home.

Group Singing Has Multiple Benefits in the Context of Chronic Pain: An Exploratory Pilot Study.

AIMS: This paper reports findings of a pilot singing intervention to assist people living with chronic pain. METHODS: Pain Management Clinic outpatients participated in 10 weekly group singing sessions. Benefits of the intervention and its impact on participants' (N = 4) experiences of pain were explored qualitatively. RESULTS: Three main themes comprising over 20 separate codes indicated physical, psychological, and social dimensions associated with the intervention. People with chronic pain identify multiple benefits from participating in a group singing program. CONCLUSIONS: Results indicate that group singing in chronic pain settings has multiple benefits and may positively complement clinical outcomes, serving as an effective adjunct to conventional pain management care and nursing.

Understanding Dysphagia Care in the Community Setting.

Factors including health policy reform and the aging population are increasing demand for quality healthcare in the community. People with dysphagia are supported by speech-language pathologists (SLPs) in hospital and community settings; however, little is known about the nature of dysphagia services offered by SLPs in the community. The aim of this study was to investigate SLP services and practices provided to community-based adults with dysphagia. A national cohort (n = 144) of SLPs working with community-based clients with dysphagia completed an online survey. Results revealed that clients with neurological conditions comprised the largest proportion of the caseload. Primary referral sources were family doctors (42.4%) or other health professionals (37.5%), with low rates of self-referral. Services were primarily delivered via individual sessions (84.1%), usually within the client's home (80% saw clients at home). While many clinicians were using both clinical and instrumental assessments, half had to refer clients to the other services to access instrumental assessment. Most provided assessment and rehabilitation services, though a few (28.5%) reported using formal outcome or quality-of-life measures. Only 43.8% referred or encouraged clients or caregivers to access support or social groups and a few SLPs incorporated social participation or client well-being aspects in treatment. Speech-language pathology (SLP) practices in the community appear similar to what occurs in the acute setting, which are inherently biomedical. This may not be optimal care for clients with dysphagia who live at home and their caregivers. Further exploration about what clients and caregivers want from community-based SLP services is warranted.

Dysphagia care for adults in the community setting commands a different approach: perspectives of speech-language therapists.

BACKGROUND: Descriptions of community-based speech-language therapy (SLT) dysphagia practices and services are underrepresented in the research literature, despite the prevalence of dysphagia in the community. Owing to a globally ageing population and government drives to support people to remain living at home rather than in hospital or aged care, there is a growing need for SLT services to be responsive to the needs of clients living at home in the community, referred to in this study as 'community-based clients'. Exploration of current SLT services and dysphagia care practices for this population may identify ways services can be designed and enhanced to better meet the needs of clients and carers. AIMS: To explore the nature (i.e., characteristics) of dysphagia services and SLT clinical practices for adults with dysphagia living at home in the community. METHODS & PROCEDURES: Using a qualitative descriptive approach positioned within an explanatory sequential mixed methods design, this study explored SLT services and practices for adults with dysphagia living in the community to explain further and elaborate on findings from an earlier quantitative study. A total of 15 SLTs working with community-based clients with dysphagia were recruited using purposive representative sampling. Content analysis was used to explore the data. OUTCOMES & RESULTS: The overarching theme of community commands a different approach and was illustrated by three subthemes that highlighted how and why a different approach to dysphagia care in the community setting was necessary: (1) skills and mindset require adaptation in the community context; (2) values and approaches are different in the community context; and (3) organizational influences impact service delivery in the community context. From the data, it is apparent that the work undertaken in the community setting differs from dysphagia care in other settings and requires adapted SLT skills, values and approaches that encompass holistic care, client autonomy and carer engagement. SLT practices are also informed by organizational influences such as policies and resourcing, which in some services were enablers, while for others these presented challenges. CONCLUSIONS & IMPLICATIONS: Community-based SLT services must continue to foster flexible, responsive practices by SLTs to ensure the needs of clients and carers are met now and in future.

A Place to Call Home: Hearing the Perspectives of People Living with Homelessness and Mental Illness Through Service Evaluation.

There is an ongoing need to incorporate the perspectives of people in supported community housing to improve the provision of integrated mental health services. This study aimed to explore the satisfaction and experiences of people who have received supported housing and mental health services. We conducted a retrospective, mixed methods study using a data mining approach, analyzing consumer satisfaction survey responses collected on discharge from the service over a 7-year period. Responses from 178 consumers aged between 20 and 62 years were included. Quantitative results indicated that consumers rated the quality of services as relatively high. Analysis of qualitative responses identified seven themes describing people's views on how they had benefitted from the service. Consumers reported benefits in terms of practical and emotional supports, responsiveness of the team to their needs, socialization and community integration, personal growth and recovery, and finding 'my place'. Themes of learning and skills development were also important. These results suggest that practical support, together with emotional expressions of care and compassion are most valued by people who participated in this service. This research has implications for service evaluation and for future research, which may include focusing on the key role of connectedness, 'my place' and hope for recovery.

What stops people completing multi-drug therapy? Ranked perspectives of people with leprosy, their head of family and neighbours--across four Indian states.

UNLABELLED: Summary To maximise successful completion of multi-drug therapy (MDT) and optimise treatment outcomes for people with leprosy, it is vital to understand the relative importance of perceived factors which prevent them from completing the required number of doses in time. OBJECTIVE: To explore personal, family, social, community, attitudinal, practical, geographical, cultural and traditional factors which may influence adherence to treatment, a two-phase study was undertaken comprising issue identification via focus groups, and a ranking exercise via individual interview. STUDY DESIGN: The perspectives of 895 respondents (320 people affected by leprosy who were not able to complete treatment, 302 of their 'operational heads of family', and 273 of their nearby community members) across four states of India namely i.e. Andhra Pradesh (Salur), Chhattisgarh (Chandkhuri), Maharashtra (Kothara) and Uttar Pradesh (Barabanki) were collected, using a checklist interview method. RESULTS: Findings suggest that seeing positive changes in their symptoms as well as not seeing improvement can lead to non-completion of MDT. Problems with scheduling and travel expenses were also key issues. Better management of the expectations of people affected by leprosy and reducing the burden of treatment may be important strategies. The importance of stigma and poverty were noted through a number of issues, none of which were particularly highly ranked. CONCLUSIONS: The nature and diversity of perceived issues identified across respondent type and particularly region, suggest that the determinants of adherence are complex and multi-factorial. More community based approaches with greater coordination at the community level are recommended.

Audit of allied health assistant roles: suggestions for improving quality in rural settings.

PROBLEM: There is considerable potential for allied health assistant roles to address rural workforce shortage, but there is also a need to ensure quality of these roles. DESIGN: A total of 41 allied health assistant trial roles were audited using an intensive onsite audit by independent clinicians. SETTING: Queensland public health services across rural/regional and metropolitan settings. KEY MEASURES FOR IMPROVEMENT: Audit ratings of rural/regional and metropolitan positions were compared on indicators of training, supervision, performance, duties and scope of practice as measured through multiple sources. STRATEGIES FOR CHANGE: Appropriately targeted in-service training may facilitate more effective utilisation of rural allied health assistants. EFFECTS OF CHANGE: Metropolitan and rural/regional audits showed consistency across qualifications, provision of duty statements and formal supervision arrangements. However, rural positions were not able to provide comparable levels of in-service training and supervision, and rural positions reflected a more restricted scope of practice. LESSONS LEARNT: Training in reflective practice may be a step to realising the potential of this crucial and emerging sector of the rural health workforce.

Developing allied health professional support policy in Queensland: a case study.

INTRODUCTION: Evidence suggests that professional support for allied health professionals contributes to improved clinical practice, better client outcomes, enhanced workplace satisfaction, increased workplace morale and better clinical governance within organizations. Despite these benefits, the uptake of formal professional support is surprisingly low and implementation often ad hoc. Further, research investigating the development, evaluation and outcomes of implementing policy to establish such support is limited. CASE DESCRIPTION: Queensland Health has developed an organization-wide approach to supporting allied health professionals through a Professional Support Policy and guidelines. The processes of development, implementation and the evaluation framework of this State-wide Professional Support Policy are described. An evidence-based Professional Support Policy that is structured, collaborative and well evaluated will have benefits for allied health professions. However, policy introduction cannot occur in isolation. Current practice does not follow current evidence in the area of professional support implementation. This study describes a current practice baseline for participation prior to the mandating of such a policy. There is a need for improvements in participation rates, documentation and capacity building. CONCLUSIONS: A workforce policy with broad scope should increase the access to, and consistency of, professional support to allied health practitioners. Such policy should facilitate a higher quality clinical practice, better client outcomes, enhanced workplace satisfaction and morale. It may also maximize the recruitment and retention of allied health professionals. Mandating policy should see participation commensurate with that policy. A future step will be a Post Policy Implementation Review to determine the success and effectiveness of the Professional Support Framework within Queensland Health.

Responding to the challenge of leprosy-related disability and ultra-poverty.

INTRODUCTION: The Millennium Development Goals have provided much needed attention to extreme poverty reduction. However, people with disabilities are disproportionately affected by poverty and in some countries, even the goal of US$1 per day is far out of reach. For people with leprosy-related disability living in ultra-poverty (on less than 50 cents a day), many mainstream poverty reduction strategies are inaccessible and inappropriate. METHOD: A project in north-west Bangladesh developed a more contextually meaningful definition of ultra-poverty according to nutrition energy intake. A total of 2372 people with leprosy-related disability were surveyed. Of those, 1285 individuals fell below the ultra-poverty line. Individualised interventions were implemented over an extended period of time, comprised of targeted practical assistance, enhancing community links, advocacy for entitlements, and further linking with other initiatives. RESULTS: Follow-up data available for 856 individuals showed an average increase in per capita income of 83%. Personal contribution to the family income increased by 65%. There was a 51% increase in families having access to a latrine. Finally families reported eating 30% more meals per day, up from an average of two meals per day. CONCLUSIONS: The initiative sought to address poverty in a wide variety of ways, using minimal inputs. Over several years, the results indicate a significant change in the economic situation of individuals with leprosy related disabilities. Other organisations are encouraged to duplicate the intervention and share their results.

Pilot implementation of allied health assistant roles within publicly funded health services in Queensland, Australia: results of a workplace audit.

BACKGROUND: Allied health assistants provide delegated support for physical therapists, occupational therapists and other allied health professionals. Unfortunately the role statements, scope of practice and career pathways of these assistant positions are often unclear. To inform the future development of the allied health assistant workforce, a state-wide pilot project was implemented and audited. METHODS: New allied health assistant positions were implemented in numerous settings at three levels (trainee level, full (standard) scope and advanced scope level). Six months after implementation, 41 positions were audited, using a detailed on-site audit process, conducted by multiple audit teams. RESULTS: Thematically analysed audit findings indicated that both the full (standard) scope and the advanced scope positions were warranted, however the skills of the allied health assistants were not optimally utilised. Contributing factors to this underutilization included the reluctance of professionals to delegate clinical tasks, inconsistencies in role descriptions, limitations in training, and the time frame taken to reach an effective skill level. CONCLUSIONS: Optimal utilisation of assistants is unlikely to occur while professionals withhold delegation of tasks related to direct patient care. Formal clinical supervision arrangements and training plans should be established in order to address the concerns of professionals and accelerate full utilisation of assistants. Further work is necessary to identify the key components and distinguish key features of an advanced allied health assistant role.

Carers' experiences of dysphagia in people treated for head and neck cancer: a qualitative study.

The implication of dysphagia for people treated nonsurgically for head and neck cancer (HNC) and its detrimental effects on functioning and quality of life has been well documented. To date, however, there has been a paucity of research on the effects of dysphagia following HNC on carers, independent of the consequences of a gastrostomy. The objective of this qualitative study was to report on the experiences of carers of people with dysphagia (non-gastrostomy dependent) following nonsurgical treatment for HNC and to identify the support needs of this group. A purposive, maximum-variation sampling technique was adopted to recruit 12 carers of people treated curatively for HNC since 2007. Each participated in an in-depth interview, detailing their experience of caring for someone with dysphagia and the associated impact on their life. Thematic analysis was adopted to search the transcripts for key phases and themes that emerged from the discussions. Analysis of the transcripts revealed four themes: (1) dysphagia disrupts daily life, (2) carers make adjustments to adapt to their partner's dysphagia, (3) the disconnect between carers' expectations and the reality of dysphagia, and (4) experiences of dysphagia-related services and informal supports. Carers generally felt ill-prepared for their role in dysphagia management. The qualitative methodology successfully described the impact of dysphagia on the everyday lives of carers, particularly in regard to meal preparation, social events, and family lifestyle. Clinicians should provide adequate and timely training and support to carers and view carers as copartners in dysphagia management.