Gastrostomy uptake in motor neurone disease: a mixed-methods study of patients’ decision making

Objectives: Gastrostomy decision making is a complicated, multifaceted process for people with motor neuron disease (MND). This study explored demographic and disease-related factors that may impact on gastrostomy uptake; and reasons why people with MND accepted or declined gastrostomy, with a focus on how perceptions of swallowing and nutrition may influence decision making.Design: Prospective, cross sectional, mixed methods.Setting: An Australian multidisciplinary, specialty MND Service.Participants: 33 patients were recommended gastrostomy by the treating medical specialist. 16 of 33 were invited to participate in the prospective decision making study; of whom 10 provided informed consent.Primary and secondary outcome measures: Demographic and disease-related factors contributing to uptake are described. A stepped approach was applied to gain a comprehensive understanding of why people with MND accept or decline gastrostomy. Instruments included standardised assessments, nutrition survey and semistructured interview. Data were collected at three separate appointments, spanning a 3-week period.Results: Gastrostomy uptake was 73% following medical specialist recommendation. Participants took days, weeks or months to consider their preferences, with lengthy hospital waiting times for the procedure. Gender, site of onset and rate of disease progression were observed to contribute to uptake. Age and symptom duration did not. Integration of quantitative and qualitative data suggests that patient perceptions of swallowing and nutrition contribute to gastrostomy acceptance; however, the decision making process is heterogeneous and these factors may not be the sole or primary reasons for acceptance. Other reported factors included: reducing carer burden, improving quality of life, increasing independence, continuing participation in social outings and gaining control.Conclusions: Future research may give greater insight into how healthcare organisations can better facilitate gastrostomy decision making, to meet the needs of people living with MND. Larger, prospective, multisite studies may build on these findings to better inform clinical guidelines and minimise the impacts of delayed gastrostomy insertion

Public health agencies' use of social media for communication during pandemics: a scoping review of the literature

Public health agencies (PHAs) have increasingly incorporated social media into their communication mix during successive pandemics in the 21st century. However, the quality, timing, and accuracy of their health messages have varied significantly, resulting in mixed outcomes for communication, audience engagement, and pandemic management. This study aimed to identify factors influencing the effectiveness of pandemic-related health messages shared by PHAs on social media and to report their impact on public engagement as documented in the literature. A scoping literature review was conducted following a predefined protocol. An electronic search of 7 relevant databases and 5 grey literature repositories yielded 9,714 papers published between January 2003 and November 2022. Seventy-three papers were deemed eligible and selected for review. The results underscored the insufficiency of social media guidance policies for PHAs. Six themes were identified: message source, message topic, message style, message timing, content credibility and reliability, and message recipient profile. These themes encompassed 20 variables that could inform PHAs' social media public health communication during pandemics. Additionally, the findings revealed potential interconnectedness among the variables, and this study concluded by proposing a conceptual model that expands upon existing theoretical foundations for developing and evaluating pandemic-related health messaging

Why and how the work of Motor Neurone Disease Associations matters before and during bereavement: a consumer perspective

Background: Studies on the experiences of consumers with Motor Neurone Disease Associations at end of life and bereavement are lacking, and their role and capability within the broader sectors of health and disability are unknown. Objectives: To ascertain the experiences and views of bereaved motor neurone disease caregivers with Motor Neurone Disease Associations about service gaps and needed improvements before and during bereavement and to propose a model of care that fits with consumer preferences and where Motor Neurone Disease Associations are effective enablers of care. Methods: A national bereavement survey was facilitated in 2019 by all Motor Neurone Disease Associations in Australia. A total of 363 respondents completed the section on support provided by Motor Neurone Disease Associations. A mixed-method design was used. Results: Respondents were generally positive about support received before bereavement (73-76%), except for emotional support (55%). Positive experiences related to the following: information, equipment advice/provision, advocacy/linking to services, showing empathy/understanding, personal contact and peer social support. Negative experiences included lack of continuity in case management and contact, perceived lack of competence or training, lack of emotional support and a lack of access to motor neurone disease services in rural areas. Suggested improvements were as follows: more contact and compassion at end of life and postdeath; better preparation for end of life; option of discussing euthanasia; providing referrals and links for counseling; access to caregiver support groups and peer interaction; provision of a genuine continuum of care rather than postdeath abandonment; guidance regarding postdeath practicalities; and more access to bereavement support in rural areas. Conclusion: This study provides consumer perspectives on driving new or improved initiatives by Motor Neurone Disease Associations and the need for a national standardised approach to training and service delivery, based on research evidence. A public health approach to motor neurone disease end-of-life care, of international applicability, is proposed to address the needs and preferences of motor neurone disease consumers, while supporting the capability of Motor Neurone Disease Associations within a multidisciplinary workforce to deliver that care

Relational autonomy in breast diseases care: A qualitative study of contextual and social conditions of patients' capacity for decision-making 17 Psychology and Cognitive Sciences 1701 Psychology

Background: A relational approach to autonomy refers to the way in which social conditions and relationships shape a person's self-identity and capacity in decision-making. This article provides an empirical account of how treatment choices for women undergoing breast diseases care are fostered within the dynamics of their relationships with clinicians, family members, and other aspects of their social environment. Methods: This qualitative study recruited ten women undergoing treatment at a breast programme, and eight clinicians supporting their care, in a private teaching hospital in New South Wales, Australia. Fourteen patient-clinician consultation observations and 17 semi-structured interviews were conducted. Schema analysis of interview transcripts were undertaken by a team of researchers and corroborated by observational fieldnotes. Results: Relational identities of patients influenced the rationale for treatment decision-making. Patients drew on supportive resources from family and medical advice from clinicians to progress with treatment goals. While clinicians held much social power over patients as the medical experts, patients highlighted the need for clinicians to earn their trust through demonstrated professionalism. Information exchange created a communicative space for clinicians and patients to negotiate shared values, promoting greater patient ownership of treatment decisions. As treatment progressed, patients' personal experiences of illness and treatment became a source of self-reflection, with a transformative impact on self-confidence and assertiveness. Conclusion: Patients' confidence and self-trust can be fostered by opportunities for communicative engagement and self-reflection over the course of treatment in breast disease, and better integration of their self-identity and social values in treatment decisions

Development and application of an indicator assessment tool for measuring health services accreditation programs

© 2015 Mumford et al. Background: Hospital accreditation programs are internationally widespread and consume increasingly scarce health resources. However, we lack tools to consistently identify suitable indicators to assess and monitor accreditation outcomes. We describe the development and validation of such a tool. Results: Using Australian accreditation standards as our reference point we: reviewed the research evidence for potential indicators; looked for links with existing external indicators; and assessed relevant state and federal policies. We allocated provisional scores, on a five point Likert scale, to the five accountability criteria in the tool: research; accuracy; proximity; no adverse effects; and specificity. An expert panel validated the use of the purpose designed indicator assessment tool. The panel identified hand hygiene compliance rates as a suitable process indicator, and hospital acquired Staphylococcus aureus infection (SAB) rates as an outcome indicator, with the hypothesis that improved hand hygiene compliance rates and lower SAB rates would correlate with accreditation performance. Conclusions: This new tool can be used to identify, analyse, and compare accreditation indicators. Using infection control indicators such as hand hygiene compliance and SAB rates to measure accreditation effectiveness has merit, and their efficacy can be determined by comparing accreditation scores with indicator outcomes. To verify the tool as a robust instrument, testing is needed in other health service domains, both in Australia and internationally. This tool provides health policy makers with an important means for assessing the accreditation programs which form a critical part of the national patient safety and quality framework