Ethical implementation of mitochondrial donation in Australia.

Australia has recently legalised mitochondrial donation. However, key ethical and legal issues still need to be addressed. This paper maps the relevant issues and offers some suggestions for how they ought to be resolved.

Examining the role of governmsent in shaping disability inclusiveness around COVID-19: a framework analysis of Australian guidelines.

BACKGROUND: The COVID-19 pandemic has uncovered the ways in which disabled people are made more vulnerable due to structural inequalities. These vulnerabilities are the result of the interaction between individual and structural factors that shape how risk is experienced by disabled people. In Australia, these vulnerabilities are influenced by the way disability services and care for disabled people are delivered through a consumer-directed approach. We analysed the policies and documentation made by the Australian Government and state and territory governments during the pandemic to explore whether these were disability-inclusive. We aimed to unpack how these policies shaped disabled people as vulnerable citizens. METHODS: Guided by documentary research, we used framework analysis to examine the policies of the Australian Government and state and territory governments. We analysed legislation that was given royal assent by the federal, state and territory governments, and documents (reports, fact sheets, guidance documents, etc.) published by the federal government and the state of Victoria (given that this state experienced the brunt of the epidemic in Australia) between February 2020 to August of 2020. RESULTS: We found that most of the resources were not aimed at disabled people, but at carers and workers within disability services. In addition, most policies formulated by the Australian Government were related to the expansion of welfare services and the creation of economic stimulus schemes. However, while the stimulus included unemployed people, the expansion of benefits explicitly excluded disabled people who were not employed. Most of the legislation and documents offered accessibility options, though most of these options were only available in English. Disability oriented agencies offered more extensive accessibility options. CONCLUSIONS: The findings indicate a large number of documents addressing the needs of disabled people. However, disability-inclusiveness appeared to be inconsistent and not fully considered, leaving disabled people exposed to greater risk of COVID-19. Neoliberal policies in the health and welfare sector in Australia have led to an individualisation of the responsibility to remain healthy and a reliance on people as independent consumers. Governments need to take a clear stance towards the emergence of such a discourse that actively disvalues disabled people.

Supporting children and young people with an acquired brain injury (ABI) and their siblings: The experience of a camp for families with a child with an ABI.

Paediatric acquired brain injury (ABI) is associated with long-term negative sequelae, and families must continually adapt to meet the needs of the child with ABI and family members. Condition-specific camps may support families in this process. This study explored the experience of camps for children with ABI and their families from the perspective of children and young people with ABI and their siblings. Semi-structured interviews were conducted with 10 people with ABI (Mage = 23.93, SD = 16.52 years) and 19 siblings of people with ABI (Mage = 14.53, SD = 5.73 years). Using reflexive thematic analysis, the central theme identified was "My safe space," supported by three further themes: "Having fun and relaxing," "Making friends," and "Enjoying choices." Camp was a space where the shared understanding and acceptance of ABI created a sense of safety. This was facilitated by enjoying activities, developing friendships with peers who shared the experience of ABI, and having a sense of control through choice availability. Thus, camps appear to offer opportunities to enjoy typical childhood experiences while restoring a sense of security, increasing understanding of ABI and validating attendees' experiences. Camps may, therefore, offer low-cost interventions to support children with ABI and their families.

The sibling relationship after acquired brain injury (ABI): perspectives of siblings with ABI and uninjured siblings.

Primary Objective This study explored the sibling relationship across the lifespan after acquired brain injury (ABI). Research Design A qualitative approach was used to explore the perspectives of siblings with ABI and uninjured siblings. Methods and Procedures Semi-structured interviews with 19 siblings with ABI and 20 uninjured siblings (aged 6-61 years) were analyzed using reflexive thematic analysis.  Main Outcomes and Results Four themes were identified: Living with ABI; Being normal siblings; Being part of a family; Experiencing social stigma of ABI. ABI was a traumatic event which differentiated siblings but increased understanding helped accommodate its impact. This impact was experienced within perceptions of typical sibling relationships as involving closeness and conflict. The family context shaped relationships, with parents mediating across the lifespan, while siblings' partners and children contributed to adult sibling relationships. Finally, social stigma led to distance but also protectiveness between siblings. Conclusions The sibling relationship was experienced as a continually evolving source of closeness and conflict within the family context. ABI enhanced preexisting dynamics and created new dynamics, shaped by social attitudes toward ABI. Increased understanding of ABI supported closer relationships, highlighting a need for psychoeducational interventions across the lifespan.

Chronic disease profiles of subjective memory complaints: a latent class analysis of older people in a rural Malaysian community.

Background: Subjective memory complaints (SMC) are common in the elderly and have been suggested as the first subtle sign of decline which can predict dementia. Cognitive decline is thought to be related to inflammatory processes similarly found in other chronic diseases and conditions such as stroke, heart disease and arthritis. This study aimed to examine the association of SMC with chronic diseases and the profile of these health conditions reported by a group of older adults.Methods: Data from a cross-sectional survey conducted from August 2013 and March 2014 was drawn from 6179 individuals aged 56 years and above. Multivariable logistic regression analyses were used to examine SMC's relationship with individual chronic diseases (asthma, kidney disease, heart disease, stroke, arthritis, hypertension and diabetes) and multimorbidity. Latent class analysis (LCA) was used to identify the profile of health conditions. The effect of SMC was estimated in a multinomial logistic regression as part of the latent class model.Results: SMC was statistically significant in its association with asthma, stroke, heart disease, arthritis and multimorbidity in the fully controlled multivariable logistic regression models. Three health profiles were identified: low comorbidity (n = 4136, low rates in all health conditions), arthritis group (n = 860) and diabetes and hypertension group (n = 1183). SMC was associated with arthritis group (OR = 2.04, 95% CI = 1.51-2.75) and diabetes and hypertension group (OR = 1.22, 95% CI = 1.03-1.46).Conclusion: Adapting a combination of analytical approaches allows a better understanding in the assessment of SMC's relationship with chronic diseases and the patterns of distribution of these health conditions.

The experience of a recreational camp for families with a child or young person with acquired brain injury.

The Heads Together organisation provides a weekend camping programme for children with an acquired brain injury (ABI) and their families. Utilising a qualitative approach, this study explored family experiences of the Heads Together Camp (HTC) from the perspective of parents. Semi-structured interviews were conducted with 11 parents who had attended the camp. Thematic analysis identified six themes: ABI and the family; Apprehension and discomfort; Connections and community; Hope and perspective; Fun, relaxation and respite; and Family functioning. Families experienced initial feelings of apprehension at camp, which attenuated as connections developed between camp attendees. These connections were grounded in shared experiences of ABI and enabled families to become part of an accepting community, feel less alone and share information. The camp environment also facilitated fun and relaxation, provided families with hope and perspective, and led to improvements in family relationships. Overall, recreational camps may mitigate some stressors experienced by families affected by ABI. Camps could be used to support families by providing them with connections, fun and relaxation, a sense of normality and hope for the future. Thus, recreational camps may represent an effective allied support service for this population.

Understanding the experience of compensatory and restorative memory rehabilitation: A qualitative study of stroke survivors.

Memory impairment is common following stroke. Memory skills groups (MSGs) utilising compensatory strategies and computerised cognitive training (CCT) are two rehabilitation approaches available to improve memory function; however, there is no consensus as to which is more effective following stroke. This study aimed to explore and contrast the qualitative experiences of 20 stroke survivors (Mage = 61.90, SD = 10.48, range: 34-77 years) who received six weeks' training in MSG (manualised memory skills group, n = 10) or individual-CCT (LumosityTM, n = 10). Using semi-structured interviews, data were collected and analysed thematically, adopting a critical realist approach. Six themes were identified: (1) Facilitators and barriers to intervention engagement, (2) Improving knowledge and understanding, (3) Connecting with others, (4) Perception of the intervention, (5) Impact on everyday memory and (6) Impact on emotions and sense of purpose. Encouragingly, most participants valued and enjoyed participating in the memory interventions, irrespective of rehabilitation approach. MSG participants reported learning and sharing with similar others as important to the experience and described everyday memory improvements. CCT participants described enjoyment of its game-like nature, yet reported frustration associated with game-specific characteristics, and did not report everyday memory improvements.

"He's Back so I'm Not Alone": The Impact of Deep Brain Stimulation on Personality, Self, and Relationships in Parkinson's Disease.

Deep brain stimulation (DBS) for Parkinson's disease successfully alleviates motor symptoms, but unanticipated changes in personality, self, and relationships can occur. Little is known about how these nonmotor outcomes affect patients and families. We prospectively examined the experience and meaning of DBS-related changes in personality and self for patients and caregivers. In-depth, semi-structured interviews were conducted with 22 participants (11 patient-caregiver dyads) before and 9 months after DBS and analyzed using thematic analysis. We identified three themes present prior to DBS that reflected a time of anticipation, while three themes present after DBS reflected a process of adjustment. Participants noted both positive and negative personality changes, with some, but not all, attributing them to the stimulation. The risk of stimulation-related personality change should be weighed against the procedure's motor benefits and considered in the context of disease- and medication-related personality changes. Clinical implications including perioperative education and follow-up management are discussed.

The lived experience of behaviours of concern: A qualitative study of men with traumatic brain injury.

BACKGROUND AND AIMS: Behaviours of Concern (BoC) are a debilitating consequence of Traumatic Brain Injury (TBI). Whilst perspectives of clinicians, carers and family members on BoC have been previously explored, few qualitative studies have included individuals with TBI. The aim of this study was to explore the lived experience of BoC in individuals with TBI, their close others and clinicians. METHOD: Eleven males with TBI and BoC were recruited and 25 semi-structured qualitative interviews were conducted (9 individuals with TBI, 9 close others, 7 clinicians). A six-phase thematic analysis approach was utilised. RESULTS: Frequent and persistent BoC were reported and the key themes identified included the brain injury, control, environment, mood, identity, social relationships, and meaningful participation. Whilst the brain injury contributed to BoC in all cases, the way the other themes manifested and interacted was variable. CONCLUSIONS: This study enriches our understanding of factors associated with BoC. Themes emerging from this study will inform interventions designed to reduce BoC and ultimately maximise quality of life for individuals with TBI and their families.

Learning from deep brain stimulation: the fallacy of techno-solutionism and the need for 'regimes of care'.

Deep brain stimulation (DBS) is an effective treatment for the debilitating motor symptoms of Parkinson's disease and other neurological disorders. However, clinicians and commentators have noted that DBS recipients have not necessarily experienced the improvements in quality of life that would be expected, due in large part to what have been described as the 'psychosocial' impacts of DBS. The premise of this paper is that, in order to realise the full potential of DBS and similar interventions, clinical services need to be arranged in such a way that these psychosocial dimensions are recognised and managed. Our starting point is that the psychosocial effects of DBS 'in the field' present us with analytically-useful disruptions: they disturb and foreground deeply held assumptions relating to the individual, health and its treatment, and which in a crude form manifest as the myth of technological solutionism within health care. Drawing on scholarship in medical sociology and science and technology studies (STS), we argue that DBS brings to the fore the relational dimensions of personhood, and demonstrates the emotional and social turmoil that can result if the relational dimensions of personhood are ignored by clinical services. In light of this, we argue that DBS should be implemented within a regime of care. Drawing on ethnographic research of a paediatric DBS clinical service, we provide an example of a regime of care, and conclude by reflecting on what other DBS services might learn from this paediatric service.

Physical activity: perceptions of people with severe traumatic brain injury living in the community.

PRIMARY OBJECTIVE: Increasing physical activity (PA) among people with severe traumatic brain injury (TBI) represents an important long-term rehabilitation goal. To design effective interventions to promote PA, the factors associated with PA engagement post-TBI need to be understood. RESEARCH DESIGN: A qualitative study design was employed to investigate the factors influencing PA engagement in people with severe TBI living in the community. METHODS AND PROCEDURES: Face-to-face interviews were conducted with eight people with severe TBI three to five years post-injury. A constant comparative method of data collection and analysis was adopted. MAIN OUTCOMES AND RESULTS: Interviews were analysed using thematic analysis. Three themes were identified: continuance of self and PA (perception of self, stage of life, and PA normality), beliefs about PA (knowledge of PA and associated benefits), and purpose of PA engagement (reasons for being physically active). Lifelong PA habits and current life priorities impacted on PA engagement post-TBI and influenced whether TBI-associated impairments were considered as a barrier to PA. CONCLUSION: Among this group of people, PA engagement post-TBI was influenced by perceptions of lifelong PA habits and current life priorities. Interventions to increase PA need to address these perceptions and adapt PA to account for life priorities within the context of TBI-associated impairments.

"Just One Thing after Another": Recursive Cascades and Chronic Conditions.

Chronic conditions and their resultant difficulties in daily living frequently occur with other health problems, sometimes due to interactions or complications at a biological level, or as a result of common pathogens or risk factors. On other occasions, they develop independently. Drawing on research conducted with Australian women that began in the mid-2000s and is still ongoing, we highlight how chronic structural factors shape the risk factors of "chronic" conditions, influencing health seeking, continuity of care, and health outcomes. Institutional, economic, and other circumstantial factors pertain and impact health trajectories as much in highly industrialized as in resource poor settings. In illustrating how poverty and social exclusion create the preconditions of multiple chronic health problems, and how chronic health problems increase such disadvantages for individuals and their households, we introduce the idea of "recursive cascades" to capture the often inevitable trajectory of increasing ill health and growing empoverishment.

The lived experience of volunteering in a palliative care biography service.

OBJECTIVE: Many patients approaching death experience hopelessness, helplessness, and a depressed mood, and these factors can contribute to a difficult end-of-life (EoL) period. Biography services may assist patients in finding meaning and purpose at this time. The aim of our study was to investigate the lived experience of volunteers involved in a biography service in Melbourne, Australia, using a qualitative methodology. METHOD: The participants were 10 volunteers who had participated in a biography service within a private palliative care service. Each volunteer was interviewed separately using a study-specific semistructured interview guide. The transcripts of these interviews were then subjected to thematic analysis. RESULTS: Analysis yielded the following themes: motivations for volunteering; dealing with death, dying, and existential issues; psychosocial benefits of volunteering; and benefits and challenges of working with patients and their families. Our results indicated that volunteering gave the volunteers a deeper appreciation of existential issues, and helped them to be more appreciative of their own lives and gain a deeper awareness of the struggles other people experience. They also suggested that volunteers felt that their involvement contributed to their own personal development, and was personally rewarding. Furthermore, the results highlighted that volunteers found that encounters with family members were sometimes challenging. While some were appreciative, others imposed time limits, became overly reliant on the volunteers, and were sometimes offended, hurt, and angered by what was included in the final biography. SIGNIFICANCE OF RESULTS: It is hoped that the findings of the current study will provide direction for improvements in the biography services that will benefit patients, family members, and volunteers. In particular, our findings highlight the need to provide ongoing support for volunteers to assist them in handling the challenges of volunteering in a palliative care setting.

The pathways to reproductive health education for women with physical disabilities in vietnam.

OBJECTIVE: To examines the access to reproductive health information by women with physical disabilities in Ho Chi Minh City, Vietnam. METHODS: An ethnography was used in this research. Data collection was conducted by using observations, photovoice, and in-depth interview with 30 participants, which including 20 women with physical disabilities, 5 healthcare providers, and 5 key informants. RESULTS: Research findings revealed that women with physical disabilities had variable reproductive health knowledge with some women being more informed than others. They obtained reproductive health knowledge via four pathways: family, school, community, and self-learning via peers and the Internet. They learned different types of information from these sources, but their reproductive health resources remained limited, leading to very little reproductive health knowledge for women. CONCLUSION: Most women in this research are not educated by family members about reproductive health issues due to the Vietnamese cultural and social norms about sexual and reproductive health and ideas about disability. Some women have the opportunity to complete grade 9 and higher education levels, hence they are able to access authorized information via biology classes and other sexual and reproductive health training courses. Some recommendations are given including [1] Comprehensive sexual and reproductive health education should be taught in schools; [2] The Ministry of Education and Training works with NGOs to provide more authoritative sexual and reproductive health documents or workplace training for all people with disabilities; [3] Social policy makers in Vietnam should review their policies regarding improving the quality of life of people with disabilities.

Redefining the Successful Aging of veterans: A scoping review.

BACKGROUND AND OBJECTIVES: The aging experiences of military veterans provide critical insights into what successful aging is and means for later life contexts constrained by distinct health and social needs. Can veterans 'successfully' age when they are exposed to so many stressors with serious health and social consequences for later life? Veterans can offer valuable lessons for developing comprehensive approaches to refining successful aging, ensuring inclusivity of different older populations. Building on Rowe and Kahn's idea of successful aging, we utilize the complementary concept of 'active aging' to explore if there are unique factors, characteristics, and interventions that support active aging in veterans, compared to non-veteran populations. RESEARCH DESIGN AND METHODS: A rapid review and evidence synthesis was conducted across 9 databases in medicine, psychology, anthropology, sociology, and public health to search for peer-reviewed articles and research reports. RESULTS: Findings suggest that programs linking health and social dimensions can support the active aging of veterans, namely interventions promoting active physical and cognitive lifestyle as well as social connectedness and engagement. Such programs and interventions help prevent and combat mental and physical health decline and increase quality of life and well-being. DISCUSSION AND IMPLICATIONS: Findings have implications for veteran and non-veteran populations more broadly, as people can actively age even when they have unique health and social needs.

The strength to cope: spirituality and faith in chronic disease.

The lifelong management of a chronic condition requires considerable mental fortitude and commitment in social adjustment and adherence to medical advice. In examining strategies of adaptation, we draw on ethnographic research, including interviews with 69 people with type 2 diabetes and/or cardiovascular disease. We explore how they incorporate spirituality into their self-management routines, with positive impact on their health and wellbeing, and highlight the role of spiritual practices in supporting people with chronic conditions mentally, physically and socially, so encouraging personal responsibility for one's health and wellbeing.

The primary care experience of adults with chronic obstructive pulmonary disease (COPD). An interpretative phenomenological inquiry.

BACKGROUND: Studies of the lived experience of chronic obstructive pulmonary disease (COPD) reveal a number of challenges patients face when interacting with healthcare providers that may be exacerbated by unwillingness or inability to quit smoking. However, none have explored, in-depth, primary care experiences among patients with COPD in community healthcare settings. AIMS/ OBJECTIVE: The study investigated healthcare experiences of patients living independently in the community with COPD who smoked or had recently quit (at most within the last 5 years), seeking care in primary care settings. METHOD: An Interpretative Phenomenological Analysis (IPA) involving thirteen participants purposively recruited from social media posts in COPD and carer support groups, general community groups, community noticeboards and paid adverts on social media. In-depth interviews were held between February and April 2022 by phone or Zoom™ and explored patient experience of primary care, focusing on how smoking patterns, addiction and stigma impact upon and shape these experiences. RESULTS: Participants were aged between 45 to 75 years. Nine were female and two thirds were current smokers. Problematic experiences including time-constrained consultations, having to self-advocate for care "…go digging myself and then go and see him and say, can we do this, can we do that type of thing?" and guilt about smoking were common. Positive care experiences described non-judgemental interpersonal interactions with doctors, timely referral, proactive care and trust "I have an actual great trust for my GP… they're awesome, they'll look after you". Participants described how their care experience shifted as primary care adapted care delivery during COVID-19. CONCLUSIONS: Pro-active, empathetic care from general practitioners is desired from patients living with COPD. Stigma and fear of judgement was an important underlying driver of negative care experiences contributing to delayed help seeking from general practitioners.

Pilot of a dog-walking program to foster and support community inclusion for people with cognitive disabilities.

PURPOSE: To evaluate a dog-walking program (called "Dog Buddies") designed to address the need for evidence-based programs that create opportunities for people with cognitive disabilities to be more socially included in mainstream society. The research question was: Does community dog walking foster social interaction for people with cognitive disabilities? MATERIALS AND METHODS: Single-case experimental design was used with four individuals (three with intellectual disability; one with Acquired Brain Injury (ABI)) recruited via two disability service providers in Victoria. Target behaviours included frequency and nature of encounters between the person with disability and community members. Change was measured from baseline (five community meetings with a handler but no dog) to intervention period (five meetings minimum, with a handler and a dog). Semi-structured interviews, audio-recorded and transcribed verbatim, provided three participants' subjective experiences of the program. RESULTS: Dog Buddies increased the frequency of encounters for all participants. The presence of the dog helped to foster convivial encounters, community members were found to be more welcoming, and some participants were recognised or acknowledged by name over time in the intervention phase. CONCLUSIONS: The dog-walking program offered a simple means of influencing the frequency and depth of community-based social interactions for people with cognitive disabilities.IMPLICATIONS FOR REHABILITATIONThe co-presence of people with disabilities in the community with the general population does not ensure social interaction occurs.Both disability policy, and the programs or support that is provided to people with disabilities, needs to have a strong commitment to the inclusion of people with disabilities in mainstream communities.Dog Buddies is a promising example of a program where the presence of a pet dog has been demonstrated to support convivial, bi-directional encounters of people with cognitive disabilities and other community members.Dog-walking offers a simple means of influencing the frequency and depth of community-based social interactions for people with cognitive disabilities.

What is the cost, impact, and willingness to pay for an Amputee Peer Support Program?

BACKGROUND: The provision of peer support from those who have already made positive adjustments to amputation is recommended for people incurring a major limb amputation; however, few receive this service. OBJECTIVE: From a program perspective, determine the cost, impact, and willingness to pay for an Amputee Peer Support Program. STUDY DESIGN: Cost analysis. METHODS: Cost of the Amputee Peer Support Program included a cost analysis of program data over a 5-year time horizon (2013-2018) reported in Australian Dollars 2018/2019. Impact and willingness to pay for an Amputee Peer Support Program was determined through surveys of the 3 participant groups: referring health professionals, program volunteers, and program participants. RESULTS: Over 5 years, there were 793 program participants, serviced by 256 program volunteers, for a cost of $631,497. The cost per program participant was $796. Thirty-eight health professionals, 86 program volunteers, and 12 program participants reported on impact and willingness to pay. The Program was reported to have a positive impact on all participant groups. The themes of access to resources and information and the provision of social and emotional well-being were identified across all 3 groups as being important. All 3 groups reported a higher willingness to pay for the health service (range $113-$450), National Disability Insurance Scheme ($156-$432), and private health insurance ($153-$347), and a lower willingness to pay for the program participant ($23-$49). CONCLUSION: Amputee peer support had a positive impact on those receiving and providing the service. Amputee peer support is likely to be a powerful yet inexpensive addition to routine care.