Use of the My Health Record by people with communication disability in Australia: A review to inform the design and direction of future research

BACKGROUND: People with communication disability often struggle to convey their health information to multiple service providers and are at increased risk of adverse health outcomes related to the poor exchange of health information. OBJECTIVE: The purpose of this article was to (a) review the literature informing future research on the Australian personally controlled electronic health record, 'My Health Record' (MyHR), specifically to include people with communication disability and their family members or service providers, and (b) to propose a range of suitable methodologies that might be applied in research to inform training, policy and practice in relation to supporting people with communication disability and their representatives to engage in using MyHR. METHOD: The authors reviewed the literature and, with a cross-disciplinary perspective, considered ways to apply sociotechnical, health informatics, and inclusive methodologies to research on MyHR use by adults with communication disability. RESEARCH OUTCOMES: This article outlines a range of research methods suitable for investigating the use of MyHR by people who have communication disability associated with a range of acquired or lifelong health conditions, and their family members, and direct support workers. CONCLUSION: In planning the allocation of funds towards the health and well-being of adults with disabilities, both disability and health service providers must consider the supports needed for people with communication disability to use MyHR. There is an urgent need to focus research efforts on MyHR in populations with communication disability, who struggle to communicate their health information across multiple health and disability service providers. The design of studies and priorities for future research should be set in consultation with people with communication disability and their representatives.

Do cognitive, language, or physical impairments affect participation in a trial of self-management programs for stroke?

BACKGROUND: Research studies may have limited generalizability when survivors of stroke with physical, language, or cognitive impairments are excluded. AIMS: To assess whether presence of cognitive, language, or global impairments affects participation in self-management programs.

METHODS: Stroke survivors were recruited in South Australia from seven hospitals or via advertisements into a randomized controlled trial (1:1:1 ratio) of a Stroke Self-Management Program, the Stanford chronic condition self-management program, or standard care. Impairment status was measured using: Cognistat (cognition), Frenchay Aphasia assessment (language), modified Rankin Score (mRS; where score 3-5 = global disability).

PRIMARY OUTCOMES: participation (i.e. booked, accessed, and completed a program (defined as attending ≥ 50% of sessions)) and safety (i.e. adverse events). Outcomes were compared by impairment status. RESULTS: Among 315 people screened 143/149 eligible were randomized (median age 71 years; 41% male; with impairments: 62% cognitive, 34% language, 64% global disability). Participation did not differ by cognitive or language impairment status (cognitive 75%, no cognitive 68%, p = 0.54; language 78%, no language 69%, p = 0.42). However, participation did vary by global impairment status (global disability 61%, no disability 96%, p < 0.001). Participants with cognitive impairment experienced more adverse events (severe n = 9 versus no cognitive impairment n = 1).

CONCLUSION: Survivors of stroke with cognitive, language, or global impairments are able to participate in self-management programs and should be included in these types of research studies or programs. Reduced participation by those with global disability and the possibility of more adverse events in people with cognitive impairments needs to be considered.

The first year: the support needs of parents caring for a child with an intellectual disability

AIM: To describe the support needs of parents caring for a child with an intellectual disability in the first year of life. BACKGROUND: Parents of children with intellectual disabilities face significant challenges during the first year of their child's life which is an important developmental period not previously addressed in the literature. The provision of support by health professionals, particularly nurses and midwives, during this crucial period can impact on parental well-being and on the health and developmental outcomes of their children. However, parents often feel unsupported. DESIGN: The study used a qualitative descriptive methodology. METHODS: Semi-structured interviews were conducted with parents of eleven children with an intellectual disability in Victoria, Australia, during 2014. Interviews were digitally recorded, transcribed verbatim and analysed using thematic data analysis. FINDINGS: Three key areas of support need were identified to assist parents to provide effective care for their child with an intellectual disability in the first year of life: (1) emotional support as parents adjusted to their role of caring for a child with an intellectual disability; (2) information support as they embarked on a quest for knowledge; and (3) support to facilitate their connection to peer networks. The findings highlighted inconsistent provision of support for parents. CONCLUSION: This study informs health professionals about how to provide holistic, timely support to parents of children with intellectual disabilities in the first year of life. There is an urgent need to review how nurses and midwives can provide relevant support that is responsive to parents' needs.

Identification of patients at risk of poor outcomes following hip or knee arthroplasty

Les arthroplasties totales de la hanche (ATH) et du genou (ATG) sont souvent offertes aux patients atteints de dégénérescence articulaire sévère. Bien qu’efficace chez la majorité des patients, ces interventions mènent à des résultats sous-optimaux dans de nombreux cas. Il demeure difficile d’identifier les patients à risque de résultats sous-optimaux à l’heure actuelle. L’identification de ces patients avant la chirurgie pourrait permettre d’optimiser la gamme de soins et de services offerts et de possiblement améliorer les résultats de leur chirurgie. Ce mémoire a comme objectifs : 1) de réaliser une revue systématique des déterminants associés à la douleur et aux incapacités fonctionnelles rapportées par les patients à moyen-terme suivant ces deux types d’arthroplastie et 2) de développer des modèles de prédiction clinique permettant l’identification des patients à risque de mauvais résultats en terme de douleur et d’incapacités fonctionnelles suivant l’ATH et l’ATG. Une revue systématique de la littérature identifiant les déterminants de la douleur et de la fonction suivant l’ATH et l’ATG a été réalisée dans quatre bases de données jusqu’en avril 2015 et octobre 2014, respectivement. Afin de développer un algorithme de prédiction pouvant identifier les patients à risque de résultats sous-optimaux, nous avons aussi utilisé des données rétrospectives provenant de 265 patients ayant subi une ATH à l’Hôpital Maisonneuve-Rosemont (HMR) de 2004 à 2010. Finalement, des données prospectives sur 141 patients recrutés au moment de leur inclusion sur une liste d’attente pour une ATG dans trois hôpitaux universitaires à Québec, Canada et suivis jusqu’à six mois après la chirurgie ont permis l’élaboration d’une règle de prédiction clinique permettant l’identification des patients à risque de mauvais résultats en terme de douleur et d’incapacités fonctionnelles. Vingt-deux (22) études d’une qualité méthodologique moyenne à excellente ont été incluses dans la revue. Les principaux déterminants de douleur et d’incapacités fonctionnelles après l’ATH incluaient: le niveau préopératoire de douleur et de fonction, un indice de la masse corporelle plus élevé, des comorbidités médicales plus importantes, un état de santé générale diminué, une scolarité plus faible, une arthrose radiographique moins sévère et la présence d’arthrose à la hanche controlatérale. Trente-quatre (34) études évaluant les déterminants de douleur et d’incapacités fonctionnelles après l’ATG avec une qualité méthodologique moyenne à excellente ont été évaluées et les déterminants suivant ont été identifiés: le niveau préopératoire de douleur et de fonction, des comorbidités médicales plus importantes, un état de santé générale diminué, un plus grands niveau d’anxiété et/ou de symptômes dépressifs, la présence de douleur au dos, plus de pensées catastrophiques ou un faible niveau socioéconomique. Pour la création d’une règle de prédiction clinique, un algorithme préliminaire composé de l’âge, du sexe, de l’indice de masse corporelle ainsi que de trois questions du WOMAC préopératoire a permis l’identification des patients à risque de résultats chirurgicaux sous-optimaux (pire quartile du WOMAC postopératoire et percevant leur hanche opérée comme artificielle avec des limitations fonctionnelles mineures ou majeures) à une durée moyenne ±écart type de 446±171 jours après une ATH avec une sensibilité de 75.0% (95% IC: 59.8 – 85.8), une spécificité de 77.8% (95% IC: 71.9 – 82.7) et un rapport de vraisemblance positif de 3.38 (98% IC: 2.49 – 4.57). Une règle de prédiction clinique formée de cinq items du questionnaire WOMAC préopratoire a permis l’identification des patients en attente d’une ATG à risque de mauvais résultats (pire quintile du WOMAC postopératoire) six mois après l’ATG avec une sensibilité de 82.1 % (95% IC: 66.7 – 95.8), une spécificité de 71.7% (95% IC: 62.8 – 79.8) et un rapport de vraisemblance positif de 2.9 (95% IC: 1.8 – 4.7). Les résultats de ce mémoire ont permis d’identifier, à partir de la littérature, une liste de déterminants de douleur et d’incapacités fonctionnelles après l’ATH et l’ATG avec le plus haut niveau d’évidence à ce jour. De plus, deux modèles de prédiction avec de très bonnes capacités prédictives ont été développés afin d’identifier les patients à risque de mauvais résultats chirurgicaux après l’ATH et l’ATG. L’identification de ces patients avant la chirurgie pourrait permettre d’optimiser leur prise en charge et de possiblement améliorer les résultats de leur chirurgie.

Measuring the impact of illness perception on NHS audiology service usage in presbycusis patients – a feasibility study

Objective: Coping behaviour in adult hearing loss is still not well understood. Despite the high prevalence of hearing loss in those over 65, many people do not seek help for hearing loss. The common sense model of illness perceptions suggests that illness perceptions are a strong predictor of adapted coping behaviours, including help-seeking and take-up of treatments. This study aimed to determine the feasibility of using the brief illness perceptions questionnaire (bIPQ) to measure the impact of illness perception in predicting usage of NHS audiology services. Study design: Twenty-four volunteers were recruited from a standard NHS audiology outpatient clinic and illness perception was measured using the bIPQ. Two different recruitment strategies were explored and compared in terms of recruitment and retention rates. Comprehensibility of the questionnaire was assessed by Think Aloud Analysis in a subset of participants, while possible risks and burdens were monitored in structured telephone interviews. Results: The questionnaire is a comprehensive and quick tool to measure individual illness perception at minimal cost. We suggested minor adaptations of three questionnaire items to increase comprehension. Participants preferred to complete the questionnaire after their appointment at the clinic facilities rather than at home prior to their hearing assessment appointment. There were no identified risks or burdens to participants in this study. Conclusions: This approach met our criteria for feasibility. Understanding the impact of illness perception on patients’ coping behaviour in presbycusis could improve treatment outcomes and increase patient satisfaction, while promoting a more efficient and individualized audiology service.

Identification of patients at risk of poor outcomes following hip or knee arthroplasty

Les arthroplasties totales de la hanche (ATH) et du genou (ATG) sont souvent offertes aux patients atteints de dégénérescence articulaire sévère. Bien qu’efficace chez la majorité des patients, ces interventions mènent à des résultats sous-optimaux dans de nombreux cas. Il demeure difficile d’identifier les patients à risque de résultats sous-optimaux à l’heure actuelle. L’identification de ces patients avant la chirurgie pourrait permettre d’optimiser la gamme de soins et de services offerts et de possiblement améliorer les résultats de leur chirurgie. Ce mémoire a comme objectifs : 1) de réaliser une revue systématique des déterminants associés à la douleur et aux incapacités fonctionnelles rapportées par les patients à moyen-terme suivant ces deux types d’arthroplastie et 2) de développer des modèles de prédiction clinique permettant l’identification des patients à risque de mauvais résultats en terme de douleur et d’incapacités fonctionnelles suivant l’ATH et l’ATG. Une revue systématique de la littérature identifiant les déterminants de la douleur et de la fonction suivant l’ATH et l’ATG a été réalisée dans quatre bases de données jusqu’en avril 2015 et octobre 2014, respectivement. Afin de développer un algorithme de prédiction pouvant identifier les patients à risque de résultats sous-optimaux, nous avons aussi utilisé des données rétrospectives provenant de 265 patients ayant subi une ATH à l’Hôpital Maisonneuve-Rosemont (HMR) de 2004 à 2010. Finalement, des données prospectives sur 141 patients recrutés au moment de leur inclusion sur une liste d’attente pour une ATG dans trois hôpitaux universitaires à Québec, Canada et suivis jusqu’à six mois après la chirurgie ont permis l’élaboration d’une règle de prédiction clinique permettant l’identification des patients à risque de mauvais résultats en terme de douleur et d’incapacités fonctionnelles. Vingt-deux (22) études d’une qualité méthodologique moyenne à excellente ont été incluses dans la revue. Les principaux déterminants de douleur et d’incapacités fonctionnelles après l’ATH incluaient: le niveau préopératoire de douleur et de fonction, un indice de la masse corporelle plus élevé, des comorbidités médicales plus importantes, un état de santé générale diminué, une scolarité plus faible, une arthrose radiographique moins sévère et la présence d’arthrose à la hanche controlatérale. Trente-quatre (34) études évaluant les déterminants de douleur et d’incapacités fonctionnelles après l’ATG avec une qualité méthodologique moyenne à excellente ont été évaluées et les déterminants suivant ont été identifiés: le niveau préopératoire de douleur et de fonction, des comorbidités médicales plus importantes, un état de santé générale diminué, un plus grands niveau d’anxiété et/ou de symptômes dépressifs, la présence de douleur au dos, plus de pensées catastrophiques ou un faible niveau socioéconomique. Pour la création d’une règle de prédiction clinique, un algorithme préliminaire composé de l’âge, du sexe, de l’indice de masse corporelle ainsi que de trois questions du WOMAC préopératoire a permis l’identification des patients à risque de résultats chirurgicaux sous-optimaux (pire quartile du WOMAC postopératoire et percevant leur hanche opérée comme artificielle avec des limitations fonctionnelles mineures ou majeures) à une durée moyenne ±écart type de 446±171 jours après une ATH avec une sensibilité de 75.0% (95% IC: 59.8 – 85.8), une spécificité de 77.8% (95% IC: 71.9 – 82.7) et un rapport de vraisemblance positif de 3.38 (98% IC: 2.49 – 4.57). Une règle de prédiction clinique formée de cinq items du questionnaire WOMAC préopratoire a permis l’identification des patients en attente d’une ATG à risque de mauvais résultats (pire quintile du WOMAC postopératoire) six mois après l’ATG avec une sensibilité de 82.1 % (95% IC: 66.7 – 95.8), une spécificité de 71.7% (95% IC: 62.8 – 79.8) et un rapport de vraisemblance positif de 2.9 (95% IC: 1.8 – 4.7). Les résultats de ce mémoire ont permis d’identifier, à partir de la littérature, une liste de déterminants de douleur et d’incapacités fonctionnelles après l’ATH et l’ATG avec le plus haut niveau d’évidence à ce jour. De plus, deux modèles de prédiction avec de très bonnes capacités prédictives ont été développés afin d’identifier les patients à risque de mauvais résultats chirurgicaux après l’ATH et l’ATG. L’identification de ces patients avant la chirurgie pourrait permettre d’optimiser leur prise en charge et de possiblement améliorer les résultats de leur chirurgie.

Feeding ecology and life-history strategy of nesting males in a fish with long parental care, Lusitanian toadfish (Halobatrachus didactylus, Batrachoididae)

The Lusitanian toadfish, Halobatrachus didactylus, like other batrachoidids, is a benthic fish species with nesting behaviour during the breeding season. During this prolonged period it engages in mating activities and remains in the nest providing parental care. It is not known whether males feed while providing parental care but it is likely that their limited mobility may restrict their diet and influence their fitness. As a consequence, egg cannibalism could occur as a life-history strategy. The aim of the present study is to ascertain the feeding behaviour of nesting males, in comparison to mature non-nesting males, and to identify potential life-history traits related to egg cannibalism. Nest-holders were sampled from artificial nests placed in an intertidal area of the Tagus estuary, only exposed during spring low tides. The diet of nest-holders was compared with that of non-nesting mature males from the same area, captured by otter trawl. The present study demonstrates that despite their constrained mobility nest-holders feed during the breeding season, although in a more opportunistic fashion than non-nesting males. Nest-holders showed a generalist feeding behaviour, with a more heterogeneous diet. Egg cannibalism was not related to male condition, paternity or brood size but showed a higher incidence early in the season when water temperatures were lower. The results suggest a possible seasonal trade-off strategy between care and energy recovery, triggered by environmental factors, where under unfavourable conditions to sustain viable eggs the male may recover energy by eating eggs, thus benefiting future reproductive success, later in the season.

Estudo do comportamento parental face à criança com paralisia cerebral

Dissertação de Mestrado apresentada no Instituto Superior de Psicologia Aplicada para obtenção de grau de Mestre na especialidade de Psicologia Clínica

Que práticas de envolvimento parental na educação dos filhos: Percepção das mães

Dissertação de Mestrado apresentada no Instituto Superior de Psicologia Aplicada para obtenção do Grau de Mestre na especialidade de Psicologia Educacional

The Comparative Effectiveness of EEG Biomarkers in Antidepressant Response and Illness Prediction in Major Depressive Disorder

Thesis (Ph.D, Neuroscience Studies) -- Queen's University, 2016-08-27 00:55:35.782

Quality Physical Activity Participation for Military Veterans with a Physical Disability

Minimal research has explored what comprises a quality physical activity (PA) participation experience, particularly among military Veterans with a physical disability for whom evidence of the benefits of PA is growing. To address this research gap, this dissertation examines quality PA participation among military Veterans with a physical disability. Manuscript 1 explores the views of Veterans with a physical disability regarding what elements constitute a quality PA experience, and how these elements may be fostered. Eighteen Veterans with various physical disabilities and PA experiences participated in interviews. Four quality elements were identified via thematic analysis: group cohesion, challenge, having a role, and independence and choice. A further three factors (the physical and social environments, and program structure) were identified as precursors for a quality experience. Manuscript 2 explores how PA programs for Veterans with a physical disability are delivered, and how these delivery strategies link conceptually to quality participation. Interviews were conducted with program staff from three PA programs for Veterans, and program documentation collected, to develop an understanding of program delivery strategies. Four strategies with potential links to quality participation were identified through thematic analysis: foster social connections, challenge participants, tailor programs and outcomes to match participant needs, and include knowledgeable coaches and instructors. Manuscript 3 evaluates the participation of Veterans with functional impairments in PA events, and examines the relationships among quality precursors, quality elements, and participation outcomes. Results indicate that program participation did not promote long-term increases in PA indicators. However, an indicator of the quality element belongingness mediated the relationship at particular time-points between coach interpersonal skills and three participation outcomes: family integration, PA intentions, and PA planning. These findings suggest that a quality participation experience created by coaches may positively impact the transition to civilian life, and promote efforts to engage in ongoing PA. Overall, this dissertation contributes towards a greater depth in understanding of the experiences of Veterans with a physical disability in PA programs. The findings begin to provide a foundation for researchers and practitioners aiming to create, deliver, and promote quality PA interventions and programming for Veterans with a physical disability.

Successful Aging with Illness

In twenty years almost one in four Canadians will be over the age of 65. How successfully these people age will influence their quality of life and contribute to their physical health. Illness and disease are frequent components of aging; however, ‘successful aging’ research normally excludes people with illness. Older people living with illness, even life threatening illness, often self-report a good quality of life and continue to experience psychological well-being and a significant engagement in social life. This dissertation uses a three manuscript approach to examine successful aging among people with illness. The first manuscript employed a scoping review to examine the models used in recent successful aging research, compiling the most frequently used constructs which included: engagement, optimism and/or positive attitude, resilience, spirituality and/or religiosity, self-efficacy and/or self-esteem, and gerotranscendence. The second manuscript utilized data gathered via interviews (online or in person) with people over the age of 65 years living with illness. The majority of these participants reported success in aging; only resilience was predictive in the binomial regression analysis. The third manuscript examined the role of social determinants of health on successful aging. The analysis revealed that disengagement from community-activities showed a significant association with higher self-reported successful aging. The best fitting model for predicting rate of successful aging with illness was a linear combination of participants’ ageism score and community activity score, while controlling for gender and age. When considered together, the results from these three manuscripts suggest that successful aging can be experienced by older adults aging with illness. And that, among these older adults, resilience, community interaction and ageism may all play a part in determining the extent to which aging is experienced as successful. Recommendations include the suggestion that we embrace the idea that people with illness can self-define as successful agers. Further, since some of the associated constructs (e.g. resilience) can be fostered, successful aging could be bolstered by education or programs to build skills along with the usual treatment modalities for the illnesses that co-exist.

Person-centred information to parents in paediatric oncology (the PIFBO study) : A study protocol of an ongoing RCT

Background: Parents of children with cancer experience a demanding situation and often suffer from psychological problems such as stress. Trying to coping with the complex body of information about their child's disease is one factor that contributes to this stress. The aim of this study is to evaluate an intervention for person-centred information to parents of children with cancer that consists of four sessions with children's nurses trained in the intervention method. Methods/Design: This is a multi-centre RCT with two parallel arms and a 1:1 allocation ratio. The primary outcome is illness-related parental stress. Secondary outcomes are post-traumatic stress symptoms, anxiety, depression, satisfaction with information, expected and received knowledge, and experiences with health care providers. A process evaluation is performed to describe experiences and contextual factors. Data are collected using web questionnaires or paper forms according to the parents' preference, audio recording of the intervention sessions, and qualitative interviews with parents and the intervention nurses. Discussion: Few studies have evaluated information interventions for parents of children with cancer using large multi-centre RCTs. This intervention is designed to be performed by regular staff children's nurses, which will facilitate implementation if the intervention proves to be effective. Trial registration: Clinical trials NCT02332226 (December 11, 2014).

Filicide and parental separation and divorce

This paper discusses the findings of a ten-year study of filicide in Victoria, Australia, using the data from selected case files held in the Victorian coroner's office for the period 2000–09. The study sought to examine whether separation is a factor in filicide cases, as well as the role of other factors, such as domestic violence and mental illness. Also, the study sought to identify whether filicide perpetrators had contact with support services, including family and friends, general practitioners, mental health services and child protection services, in order to ascertain how these services might more appropriately identify those families most at risk prior to the filicide. The study found that while separation was a factor identified in a significant number of cases, more cases analysed showed evidence of mental illness, mainly depression. These findings suggest the need for improved strategies in preventing filicide by identifying risk factors and improving service responses for victims prior to these tragic events.

Try walking in my shoes: empathy and portrayals of mental illness on screen

How is mental illness represented in film and television? What emotions are elicited from the viewer? How have these portrayals changed over time? And what are the implications of these portrayals for mental health awareness in the community?This interdisciplinary symposium brings together academics, filmmakers, mental health practitioners and consumers to explore these and other questions concerning the portrayal of mental illness on screen. Across two days of screenings, lectures, panels and workshops, we will discuss a range of representations of mental illness, from early cinema to Hollywood studio films, from ethnographic documentaries to television programs. The symposium has a particular focus on women’s mental health and the portrayal of mental illness in Australian films.A key theme of the symposium is the emotion of empathy. If sympathy suggests feeling for someone (that is, feeling sorry for them), empathy is distinguished by feeling with them. This sharing of emotion gives us valuable insight into how things are with another person. This insight can lead to a greater understanding that reduces stigma and discrimination, and helps us to see ‘the other’ as an equal human being. That is why empathy is such an important concept in philosophy, politics, psychology and human rights education.Cinema and television are powerful media that can take the audience on an imaginative journey and tap into our potential to empathise with another human being. Our speakers will examine the ways in which the viewer’s empathy is elicited (or not) by these screen portrayals of mental illness, as well as the benefits and limitations of an empathetic relationship between viewer and character. In this way, the symposium contributes to the broader discussion initiated by the ARC Centre of Excellence for the History of Emotions about the ways in which emotions shape individual, community and national identities.We welcome discussion of these issues from all participants – both speakers and audience members – and we look forward to a dialogue that is open-minded and sensitive to all involved. We hope this will be the start of many more conversations on this important issue that affects us all.