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1.
Health Expect ; 27(2): e14026, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38618991

ABSTRACT

BACKGROUND: Awareness and understanding of dementia remain limited in ethnically diverse populations in multicultural societies due to culturally inappropriate and inaccessible information. OBJECTIVE: To establish the impact, helpers and hinderers of an online multilingual dementia awareness initiative co-created with and for English, Arabic and Vietnamese speaking people. DESIGN: A case study using mixed methods to assess the impact and implementation of an information session on dementia knowledge. SETTING AND PARTICIPANTS: The study was conducted with English, Arabic and Vietnamese speaking individuals in Canterbury-Bankstown, Australia. INTERVENTION STUDIED: A dementia alliance co-created an online multilingual dementia information session, which was delivered synchronously in English, Arabic and Vietnamese by trained facilitators. MAIN OUTCOME MEASURES: In-session group discussions, quizzes and a postsession survey assessed the impact on dementia knowledge. A postimplementation focus group explored the factors that helped and hindered the initiative. RESULTS: The online dementia information session successfully supported participants understanding of dementia causes, impacts and care strategies. The initiative was hindered by competing priorities and limited accessibility to target audiences, while it was helped by the support of an established organisation and feedback mechanisms. DISCUSSION: Ongoing dementia education and awareness-raising campaigns that are culturally sensitive are needed in communities to promote dementia literacy and help-seeking. CONCLUSIONS: An online multilingual dementia information session can be an effective way to improve dementia literacy and advocate for change in multicultural communities. PATIENT OR PUBLIC CONTRIBUTION: English, Arabic and Vietnamese speaking members of the Canterbury Bankstown Dementia Alliance participated in the co-creation and evaluation of this initiative.


Subject(s)
Cultural Diversity , Dementia , Humans , Vietnam , Australia , Education, Continuing
2.
J Paediatr Child Health ; 60(2-3): 58-66, 2024.
Article in English | MEDLINE | ID: mdl-38581288

ABSTRACT

AIM: This study addresses the absence of a definition of care for children with feeding disorders, limited agreement on key performance indicators (KPIs), and the lack of data linked to those KPIs. METHODS: Clinicians, consumers and researchers involved in outpatient feeding care in New South Wales (NSW), Australia were invited to participate in a two-Phase study. In Phase 1, a modified Delphi method was used. Two rounds of voting resulted in a new consensus definition of a multidisciplinary paediatric feeding clinic. Three further rounds voting determined relevant KPIs. In Phase 2, the KPIs were piloted prospectively in 10 clinics. RESULTS: Twenty-six clinicians, consumers and researchers participated in Phase 1. Participation across five voting rounds declined from 92% to 60% and a valid definition and KPI set were created. In Phase 2, the definition and KPIs were piloted in 10 clinics over 6 weeks. Data for 110 patients were collected. The final KPI set of 28 measures proposed covers clinical features, patient demographics and medical issues, parent-child interaction and outcome measures. CONCLUSIONS: A new definition of a multidisciplinary paediatric feeding clinic is now available, linked to a standardised KPI set covering relevant performance measures. These proved viable in baseline data collection for 10 clinics across NSW. This sets a foundation for further data collection, systematic measurement of care provision and outcomes, and research needed to deliver care improvement for children with paediatric feeding disorder.


Subject(s)
Ambulatory Care Facilities , Ambulatory Care , Humans , Consensus , Australia , New South Wales , Delphi Technique
3.
BMC Health Serv Res ; 24(1): 978, 2024 Aug 24.
Article in English | MEDLINE | ID: mdl-39180037

ABSTRACT

BACKGROUND: Children and families from priority populations experienced significant psychosocial and mental health issues to the COVID-19 pandemic. Yet they also faced significant barriers to service access, particularly families from culturally and linguistically diverse (CALD) backgrounds. With most child and family health nurse clinics ceasing in-person consultations due to the pandemic, many children missed out on health and developmental checks. The aim of this study was to investigate the perspectives and experiences of family members and service providers from an urban, CALD community regarding the implementation of a digital, developmental surveillance, Watch Me Grow-Electronic (WMG-E) program. METHODS: Semi-structured interviews were conducted with 17 family members, service navigators, and service providers in a multicultural community in South Western Sydney, Australia. This qualitative study is an implementation evaluation which formed as part of a larger, two-site, randomised controlled trial of the WMG-E program. A reflexive thematic analysis approach, using inductive coding, was adopted to analyse the data. RESULTS: Participants highlighted the comprehensive and personalised support offered by existing child and family health services. The WMG-E was deemed beneficial because the weblink was easy and quick to use and it enabled access to a service navigator who support family access to relevant services. However, the WMG-E was problematic because of technology or language barriers, and it did not facilitate immediate clinician involvement when families completed the weblink. CONCLUSIONS: Families and service providers in this qualitative study found that using WMG-E empowered parents and caregivers to access developmental screening and learn more about their child's development and engage with relevant services. This beds down a new and innovative solution to the current service delivery gap and create mechanisms that can engage families currently not accessing services, and increases knowledge around navigating the health and social care services. Notwithstanding the issues that were raised by families and service providers, which include accessibility challenges for CALD communities, absence of clinical oversight during screening, and narrow scope of engagement with available services being offered, it is worth noting that improvements regarding these implementation factors must be considered and addressed in order to have longevity and sustainability of the program. TRIAL REGISTRATION: The study is part of a large randomised controlled trial (Protocol No. 1.0, Version 3.1) was registered with ANZCTR (registration number: ACTRN12621000766819) on July 21st, 2021 and reporting of the trial results will be according to recommendations in the CONSORT Statement.


Subject(s)
COVID-19 , Cultural Diversity , Qualitative Research , Humans , Female , Male , Child , Family/psychology , Health Services Accessibility , Adult , SARS-CoV-2 , Australia , Child Health Services/organization & administration , Patient Navigation/organization & administration , Interviews as Topic , Middle Aged
4.
Palliat Med ; 37(6): 875-883, 2023 06.
Article in English | MEDLINE | ID: mdl-37092529

ABSTRACT

BACKGROUND: The need for home-based palliative care is accelerating internationally. At the same time, health systems face increased complexity, funding constraints and global shortages in the healthcare workforce. As such, ambulance services are increasingly tasked with providing palliative care. Where paramedics with additional training in palliative care have been integrated into models of care, evaluations have been largely positive. Studies of patient and family carer experiences of paramedic involvement, however, are limited. AIM: To explore patient and family caregiver experiences of paramedics' contribution to palliative care at home. DESIGN: Qualitative interview study. We analysed data within a social constructionist epistemology using reflexive thematic analysis. SETTING/PARTICIPANTS: Participants receiving specialist palliative care in the community of a metropolitan city of Australia who requested an ambulance between January and August 2018, inclusive. RESULTS: Participants considered paramedics with expertise and experience in palliative care as an extension of the specialist community palliative care team and held them in high regard. Participants highlighted the importance of: critical palliative care at home and a timely, responsive approach; person-centred paramedics; as well as safety and security. CONCLUSION: Patients and carers feel safe and secure when they know that highly responsive skilled professional support is available when an unexpected problem or sudden change arises, especially out-of-hours, and that support is delivered in an empathic and person-centred manner.


Subject(s)
Caregivers , Hospice and Palliative Care Nursing , Humans , Palliative Care , Ambulances , Qualitative Research
5.
Health Expect ; 26(4): 1716-1725, 2023 Aug.
Article in English | MEDLINE | ID: mdl-37296530

ABSTRACT

INTRODUCTION: To redress the scholarly preoccupation with gaps, issues, and problems in palliative care, this article extends previous findings on what constitutes brilliant palliative care to ask what brilliant nursing practices are supported and promoted. METHODS: This study involved the methodology of POSH-VRE, which combines positive organisational scholarship in healthcare (POSH) with video-reflexive ethnography (VRE). From August 2015 to May 2017, inclusive, nurses affiliated with a community health service who delivered palliative care, contributed to this study as co-researchers (n = 4) or participants (n = 20). Patients who received palliative care (n = 30) and carers (n = 16) contributed as secondary participants, as they were part of observed instances of palliative care. With a particular focus on the practices and experiences that exceeded expectations and brought joy and delight, the study involved capturing video-recordings of community-based palliative care in situ; reflexively analysing the recordings with the nurses; as well as ethnography to witness, experience, and understand practices and experiences. Data were analysed, teleologically, to clarify what brilliant practices were supported and promoted. RESULTS: Brilliant community-based palliative care nursing largely involved maintaining normality in patients' and carers' lives. The nurses demonstrated this by masking the clinical aspects of their role, normalising these aspects, and appreciating alternative 'normals'. CONCLUSION: Redressing the scholarly preoccupation with gaps, issues, and problems in palliative care, this article demonstrates how what is ordinary is extraordinary. Specifically, given the intrusiveness and abnormalising effects of technical clinical interventions, brilliant community-based palliative care can be realised when nurses enact practices that serve to promote a patient or carer to normality. PATIENT OR PUBLIC CONTRIBUTION: Patients and carers contributed to this study as participants, while nurses contributed to this study as co-researchers in the conduct of the study, the analysis and interpretation of the data, and the preparation of the article.


Subject(s)
Hospice and Palliative Care Nursing , Palliative Care , Humans , Qualitative Research , Delivery of Health Care , Anthropology, Cultural , Caregivers
6.
Health Expect ; 26(1): 488-497, 2023 02.
Article in English | MEDLINE | ID: mdl-36482799

ABSTRACT

INTRODUCTION: To extend research on positive aspects of health care, this article focusses on health care for children who tube-feed-this is because knowledge about tube-feeding for children is limited and fragmented. This is achieved by consulting with clinicians and carers who supported children who tube-feed to clarify their understandings of and experiences with brilliant feeding care. METHODS: Nine clinicians and nine carers who supported children who tube-fed were interviewed. The interview transcripts were analysed thematically. RESULTS: Findings highlighted several features of brilliant feeding care-namely: practices that go above and beyond; attentiveness; empowerment; being 'on the same page'; hopefulness and normalcy. CONCLUSIONS: These findings show that seemingly trivial or small acts of care can make a significant meaningful difference to carers of children who tube-feed. Such accounts elucidate brilliant care as grounded in feasible, everyday actions, within clinicians' reach. The implications associated with these findings are threefold. First, the findings highlight the need for clinicians to listen, be attuned and committed to the well-being of children who tube-feed and their carers, share decision-making, source resources, and instil hope. Second, the findings suggest that carers should seek out and acknowledge clinicians who listen, involve them in decision-making processes, and continue to source the resources required to optimize child and carer well-being. Third, the findings point to the need for research to clarify the models of care that foster brilliant feeding care, and the conditions required to introduce and sustain these models. PATIENT OR PUBLIC CONTRIBUTION: All of the carers and clinicians who contributed to this study were invited to participate in a workshop to discuss, critique, and sense-check the findings. Three carers and one clinician accepted this invitation. Collectively, they indicated that the findings resonated with them, and they agreed with the themes, which they indicated were well-substantiated by the data.


Subject(s)
Activities of Daily Living , Caregivers , Child , Humans , Specialization , Patients
7.
BMC Palliat Care ; 22(1): 157, 2023 Oct 21.
Article in English | MEDLINE | ID: mdl-37865745

ABSTRACT

BACKGROUND: Evidence-based palliative care requires comprehensive assessment and documentation. However, palliative care is not always systemically documented - this can have implications for team communication and patient wellbeing. The aim of this project was to determine the effectiveness of an aide-mémoire - POMSNAME - to prompt the comprehensive assessment of the following domains by clinicians: pain, orientation and oral health, mobility, social situation, nausea and vomiting, appetite, medication, and elimination. METHODS: A placard depicting the aide-mémoire was distributed to community-based nurses who received training and support. The case notes of palliative care patients were evaluated one month before the intervention, and was repeated at one month, eight months, and fifty months following the intervention. The 235 case notes pertained to patients who received palliative care from a team of 13 registered nurses at one community health service. RESULTS: The documented assessment of palliative care patients improved across all nine domains. The most significant improvements pertained to patients' social situation, orientation, and nausea, eight months after the aide-mémoire was introduced (170.1%, 116.9%, and 105.6%, respectively, all at p < .001). Although oral health and medication assessment declined one-month after the aide-mémoire was introduced (-41.7% and-2.1%, respectively), both subsequently improved, thereafter, at both 8 months and 50 months after the aide-mémoire was introduced. CONCLUSIONS: The improvement of palliative care documentation across all nine domains demonstrates the potential of the POMSNAME aide-mémoire to prompt the comprehensive assessment of patients by clinicians with generalist expertise. Research is required to determine whether other domains warrant inclusion and how.


Subject(s)
Hospice and Palliative Care Nursing , Palliative Care , Humans , Communication , Documentation , Nausea
8.
J Med Internet Res ; 25: e42927, 2023 03 15.
Article in English | MEDLINE | ID: mdl-36920443

ABSTRACT

BACKGROUND: Collaboration across health care professions is critical in efficiently and effectively managing complex and chronic health conditions, yet interprofessional care does not happen automatically. Professional associations have a key role in setting a profession's agenda, maintaining professional identity, and establishing priorities. The associations' external communication is commonly undertaken through social media platforms, such as Twitter. Despite the valuable insights potentially available into professional associations through such communication, to date, their messaging has not been examined. OBJECTIVE: This study aimed to identify the cues disseminated by professional associations that represent 5 health care professions spanning 5 nations. METHODS: Using a back-iterative application programming interface methodology, public tweets were sourced from professional associations that represent 5 health care professions that have key roles in community-based health care: general practice, nursing, pharmacy, physiotherapy, and social work. Furthermore, the professional associations spanned Australia, Canada, New Zealand, the United Kingdom, and the United States. A lexical analysis was conducted of the tweets using Leximancer (Leximancer Pty Ltd) to clarify relationships within the discourse. RESULTS: After completing a lexical analysis of 50,638 tweets, 7 key findings were identified. First, the discourse was largely devoid of references to interprofessional care. Second, there was no explicit discourse pertaining to physiotherapists. Third, although all the professions represented in this study support patients, discourse pertaining to general practitioners was most likely to be connected with that pertaining to patients. Fourth, tweets pertaining to pharmacists were most likely to be connected with discourse pertaining to latest and research. Fifth, tweets about social workers were unlikely to be connected with discourse pertaining to health or care. Sixth, notwithstanding a few exceptions, the findings across the different nations were generally similar, suggesting their generality. Seventh and last, tweets pertaining to physiotherapists were most likely to refer to discourse pertaining to profession. CONCLUSIONS: The findings indicate that health care professional associations do not use Twitter to disseminate cues that reinforce the importance of interprofessional care. Instead, they largely use this platform to emphasize what they individually deem to be important and advance the interests of their respective professions. Therefore, there is considerable opportunity for professional associations to assert how the profession they represent complements other health care professions and how the professionals they represent can enact interprofessional care for the benefit of patients and carers.


Subject(s)
Cues , Social Media , Humans , United States , Communication , Canada , Pharmacists , Delivery of Health Care
9.
J Clin Nurs ; 32(19-20): 7425-7441, 2023 Oct.
Article in English | MEDLINE | ID: mdl-37314051

ABSTRACT

AIM: This study aimed to explore what constitutes brilliant aged care. BACKGROUND: Although many aged care services do not offer the care that older people and carers need and want, some perform better. Rather than focus on problems with aged care, this study examined brilliant aged care-practices that exceeded expectation. DESIGN: The methodology for this study was informed by grounded theory, underpinned by constructionism to socially construct meaning. METHODS: This study invited nominations for a Brilliant Award via a survey, and interviews with the nominees via web conference. After receiving survey responses from 10 nominators, interviews were conducted with 12 nominees. Data were analysed using reflexive thematic analysis and documented according to COREQ guidelines to optimise rigour and transparency. RESULTS: According to participants, brilliant aged care involved being relationally attuned to older people, a deep understanding of the older person, recognition of aged care as more than a job, innovative practices and permission to reprioritise. CONCLUSIONS: This study suggests that, in aged care, brilliance happens. It emphasises the importance of meaningful connections and relationships in aged care, where thoughtful acts acknowledge an older person's value and humanity as well as creativity and innovation. RELEVANCE TO CLINICAL PRACTICE: For those who manage and deliver aged care, the findings suggest that small practice changes can make a positive difference to older people. Brilliant aged care can involve acts of empathy; enthusiasm for aged care; innovative practices, even those that are small scale; and reprioritising workplace tasks to spend time with older people. For policymakers, this study highlights the need to recognise and raise the profile of the pockets of brilliance within the aged care sector. This might be achieved via awards and other initiatives that serve to celebrate and learn from brilliance in its myriad forms. PATIENT OR PUBLIC CONTRIBUTION: The nominees, who included carers, were invited to participate in workshops with other carers and older people to co-design a model of brilliant aged care, during which workshop participants discussed and critiqued the findings constructed from the data.


Subject(s)
Caregivers , Motivation , Humans , Aged , Qualitative Research , Empathy , Surveys and Questionnaires
10.
Qual Health Res ; 33(1-2): 127-140, 2023 01.
Article in English | MEDLINE | ID: mdl-36537247

ABSTRACT

The HIVE is an arts-based knowledge translation (ABKT) project that showcases work undertaken across Maridulu Budyari Gumal: the Sydney Partnership for Health, Education, Research and Enterprise (SPHERE). Here, we present two distinct forms of data (reflective and evaluative) to tell the story of The HIVE and outline the project's achievements and shortcomings. Reflective data are used to describe the process of establishing a creative, cross-disciplinary collaboration, in order to devise and produce The HIVE. Evaluative data are used to assess the impact of The HIVE on audiences. By presenting reflective and evaluative data together, we highlight that impact in ABKT cannot be reduced to an assessment of audience engagement with an ABKT end-product. Although audience impact is vital, in our experience, The HIVE also had a powerful impact on the researchers, health service users, artists and others who worked together to create it. The process of creating The HIVE informed research- and art-practice change, forged interdisciplinary networks, and enabled the growth of new patterns of knowledge sharing and collaboration. The reflective and evaluative data we present attest to different forms of impact resulting from the creation and exhibition of an ABKT project.


Subject(s)
Health Education , Humans
11.
BMC Health Serv Res ; 22(1): 1203, 2022 Sep 26.
Article in English | MEDLINE | ID: mdl-36163048

ABSTRACT

BACKGROUND: Midwifery group practice (MGP) has consistently demonstrated optimal health and wellbeing outcomes for childbearing women and their babies. In this model, women can form a relationship with a known midwife, improving both maternal and midwife satisfaction. Yet the model is not widely implemented and sustained, resulting in limited opportunities for women to access it. Little attention has been paid to how MGP is managed and led and how this impacts the sustainability of the model. This study clarifies what constitutes optimal management and leadership and how this influences sustainability. METHODS: This qualitative study forms part of a larger mixed methods study investigating the management of MGP in Australia. The interview findings presented in this study are part of phase one, where the findings informed a national survey. Nine interviews and one focus group were conducted with 23 MGP managers, clinical midwife consultants, and operational/strategic managers who led MGPs. Transcripts of the audio-recordings were analysed using inductive, reflexive, thematic analysis. RESULTS: Three themes were constructed, namely: The manager, the person, describing the ideal personal attributes of the MGP manager; midwifing the midwives, illustrating how the MGP manager supports, manages, and leads the group practice midwives; and gaining acceptance, explaining how the MGP manager can gain acceptance beyond group practice midwives. Participants described the need for MGP managers to display midwife-centred management. This requires the manager to have qualities that mirror what is generally accepted as requirements for good midwifery care namely: core beliefs in feminist values and woman-centred care; trust; inclusiveness; being an advocate; an ability to slow down or take time; an ability to form relationships; and exceptional communication skills. Since emotional labour is a large part of the role, it is also necessary for them to encourage and practice self-care. CONCLUSIONS: Managers need to practice in a way that is midwife-centred and mimics good midwifery care. To offset the emotional burden and improve sustainability, encouraging and promoting self-care practices might be of value.


Subject(s)
Group Practice , Midwifery , Practice Management , Australia , Continuity of Patient Care , Female , Humans , Leadership , Pregnancy , Qualitative Research
12.
Health Promot J Austr ; 33 Suppl 1: 39-49, 2022 Oct.
Article in English | MEDLINE | ID: mdl-35714044

ABSTRACT

ISSUE ADDRESSED: Critical thinking is essential to health promotion to overcome increasingly complex health issues. International students from Middle East and Asia are however disadvantaged when required to demonstrate critical thinking mainly because of their previous training in memorisation. This study addresses this need by evaluating the effect of case scenario-based teaching on transition from memorisation to critical thinking among international students in an Australia university. METHODS: This was a pre and post intervention study and data were collected from a convenience sample of 79 international Master of Public Health students specialising in health promotion in 2019 at the University of Wollongong. RESULTS: Most of the participants were female (73.4%) and aged 25 years or older (64.6%), predominantly from India (40.5%), Nepal (31.6%) and Saudi Arabia (11.4%). A paired t-test analysis showed that the intervention - case scenario-based teaching - significantly improved the mean post-intervention critical thinking skills (P < 0.001). Case studies improved critical thinking among international students, irrespective of demographic attributes. Multiple regression analyses indicated that critical thinking predicted 78.6 of the total marks, after controlling for demographic attributes. In terms of assessment marks, improved multiple solutions skills yielded better marks for tutorial participations; while improved problem identification skills improved marks for report assessments and exams. Improved communication skills led to better marks for essay assessments. CONCLUSIONS: Case studies improved critical thinking and was a reliable predictor of student performance among the participants. SO WHAT?: This study makes a strong case for case scenario-based teaching to improve critical thinking among international students. However, given the limitations of this study, including the small, non-representative sample, further testing is required.


Subject(s)
Students, Public Health , Thinking , Female , Humans , Male , Students , Health Promotion , Australia
13.
J Paediatr Child Health ; 57(2): 182-187, 2021 02.
Article in English | MEDLINE | ID: mdl-33277951

ABSTRACT

This article presents an agenda to improve the care and wellbeing of children with paediatric feeding disorder who require tube feeding (PFD-T). PFD-T requires urgent attention in practice and research. Priorities include: routine collection of PFD-T data in health-care records; addressing the tube-feeding lifecycle; and reducing the severity and duration of disruption caused by PFD-T where possible. This work should be underpinned by principles of involving, respecting and connecting families.


Subject(s)
Enteral Nutrition , Feeding and Eating Disorders , Child , Humans
14.
Health Promot Int ; 36(1): 235-249, 2021 Mar 12.
Article in English | MEDLINE | ID: mdl-32380522

ABSTRACT

Agenda-setting theory suggests the media shapes public perceptions. Guided by this theory, this study examines the effects of organizational Twitter accounts on public discourse in the Twittersphere. The tweets that mention one of three youth mental health organizations were theorized to emanate the particular focus of the organization mentioned. This was investigated by analysing: randomly selected tweets that mentioned one of three national mental health organizations-ReachOut, headspace or the Young and Well Cooperative Research Centre but not authored by these organizations (n = 600); and the population of tweets that mentioned one of these three organizations and authored by either of the two counterparts of the mentioned organization (n = 115). Findings supported anticipated patterns, whereby the tweets reflected the remit of the three organizations. These findings reveal the influential role of social media in setting a youth mental health agenda. The implications for practitioners and researchers are discussed.


Subject(s)
Social Media , Adolescent , Humans , Mental Health
15.
Australas Psychiatry ; 29(5): 498-503, 2021 Oct.
Article in English | MEDLINE | ID: mdl-34126787

ABSTRACT

OBJECTIVE: COVID-19 propelled e-mental health within the Australian health system. It is important to learn from this to inform mental healthcare during future crises. METHOD: A lexical analysis was conducted of clinician reflections during COVID-19 as they delivered psychiatry services to children and families in New South Wales (n = 6) and transitioned to e-mental health. RESULTS: E-mental health can extend the reach of, and access to psychiatry services, particularly for individuals disadvantaged by inequity. Yet e-mental health can be problematic. It is partly contingent on technological prowess, equipment, internet access as well as space and privacy. Relatedly, e-mental health can hinder clinician capacity to conduct examinations, monitor child development as well as assess risk and the need for child protection. CONCLUSIONS: Given the benefits and limitations of e-mental health, a model that supports face-to-face mental healthcare and e-mental health may be of value. This model would require practical, yet flexible policies and protocols that protect the privacy of children and families, safeguard them from harm, and respect the needs and preferences of children, families and clinicians.


Subject(s)
Attitude of Health Personnel , COVID-19 , Child Psychiatry , Mental Disorders , Telemedicine , COVID-19/epidemiology , Child , Child Psychiatry/organization & administration , Humans , Mental Disorders/therapy , New South Wales/epidemiology , Telemedicine/organization & administration
16.
Child Care Health Dev ; 46(6): 741-748, 2020 11.
Article in English | MEDLINE | ID: mdl-32901970

ABSTRACT

BACKGROUND: Complex feeding difficulties requiring enteral (tube) feeding affect everyone around the child. Parents experience additional stress and are at risk of social isolation. This study investigated the strategies families develop and use to adjust and adapt to enteral feeding so they were not just surviving but thriving as a family. METHODS: Twenty parents whose children had been or continued to be enterally fed were interviewed, four of them twice as their experience of enteral feeding progressed. Learning theory was used to conceptualize findings in terms of changing use of tools that mediated parents' response to feeding-related challenges. RESULTS: Parents encountered dilemmas relating to enteral feeding: maintaining participation in everyday activities, managing responses to the use of tubes for feeding, and doing what feels right for their child. They used four kinds of mediating tools to overcome these: memory aids and readiness tools, metaphors and narratives, repurposed everyday objects and personalized routines and materialities. CONCLUSIONS: This novel account of tool used to resolve dilemmas provides an empirically and theoretically grounded basis for supporting parents to thrive despite the challenges of enteral feeding. Specifically, it can guide information given to help parents anticipate and cope with dilemmas arising from enteral feeding.


Subject(s)
Adaptation, Psychological , Enteral Nutrition , Parents/psychology , Adult , Child , Child, Preschool , Emotions , Female , Focus Groups , Humans , Infant , Male , Stress, Psychological/epidemiology , Stress, Psychological/prevention & control
17.
J Clin Nurs ; 29(11-12): 1957-1967, 2020 Jun.
Article in English | MEDLINE | ID: mdl-31495005

ABSTRACT

AIMS AND OBJECTIVES: To clarify how high-quality fundamentals of care for people with dementia and/or delirium were practised in a specialist geriatric evaluation and management unit. BACKGROUND: Older people with cognitive impairment represent a significant number of people who are admitted to hospital. They are at increased risk of dying, readmission and long hospital stays, relative to those without cognitive impairment. There is an urgent need to elucidate the conditions that underpin safe and high-quality fundamental care for these patients and their families. METHODS: Using the innovative methodologies of positive organisational scholarship in healthcare and video-reflexive ethnography, this 18-month study was conducted within an inpatient geriatric evaluation and management unit for people with dementia and/or delirium in South Australia. Patients, family members and staff members (managerial, clinical and nonclinical) participated by allowing researchers to document ethnographic fieldwork notes and film their practices and/or accounts thereof; and/or interpreting digital recordings with researchers in order to make sense of data in a process of co-analysis. This study is reported using Standards for Reporting Qualitative Research reporting guidelines. RESULTS: High-quality fundamental care for people with dementia and/or delirium in hospital and their families was associated with the special space of the hospital unit; an aptitude for people with dementia; a capacity to translate person-centred fundamentals of care from rhetoric to reality; and an appreciation for teamwork. CONCLUSION: This study clarified how teams working in hospital can practise high-quality fundamentals of care for older people with dementia and/or delirium. Delivery of high-quality fundamental care in this setting was dependent, not only on nurses, but the entire ward team working cohesively in a "weave of commitment." RELEVANCE TO CLINICAL PRACTICE: Efforts to improve fundamental care for people with cognitive impairment need to encompass values and philosophy of person-centred care, including the contributions by all staff to care delivery.


Subject(s)
Delirium/nursing , Dementia/nursing , Nursing Staff, Hospital/organization & administration , Quality of Health Care/standards , Aged , Aged, 80 and over , Humans , Nursing Research/methods , Nursing, Team/organization & administration , Patient-Centered Care/methods , Qualitative Research , Video Recording
18.
Health Expect ; 22(5): 1144-1155, 2019 10.
Article in English | MEDLINE | ID: mdl-31410959

ABSTRACT

BACKGROUND: Youth health issues represent a "wicked problem" - they are complex and multifaceted. Furthermore, they are likely to require novel approaches to understand their complexity and develop novel solutions. OBJECTIVE: Given the importance of youth healthcare, and the need for novel approaches, the aim of this article was to demonstrate the innovative use of two research methods - thematic and lexical analyses - to better understand practitioner perspectives of youth healthcare. It clarifies the factors that shape practitioner ability to support young people and opportunities to improve practice. DESIGN AND SETTING: Focus groups and interviews were conducted with 37 youth health practitioners. They represented government and non-government services; hospital and community services; and metropolitan and regional services. RESULTS: Thematic analysis highlighted the complexity of participants' work and the judgements made as they negotiated relationships with young people and ancillary services. Lexical analysis revealed two hitherto neglected dimensions of the complexity of youth healthcare - uncertainty and corporeality. DISCUSSION: In addition to affirming the complexities of youth healthcare, this study revealed how practitioners (can) negotiate these complexities. These findings were only possible because of the innovative use of the two research methods. CONCLUSIONS: This study has important theoretical, methodological and practical implications. Theoretically, it is the first to view the complexities of youth healthcare through the wicked problem lens. Methodologically, it highlights the complementary value of thematic and lexical analyses. Practically, it reinforces the importance of policy support and professional development to enable practitioners to grasp the complexities of their work.


Subject(s)
Adolescent Health Services , Adolescent , Adolescent Health , Adolescent Health Services/organization & administration , Focus Groups , Humans , Interviews as Topic , Linguistics , Qualitative Research
19.
BMC Public Health ; 19(1): 1388, 2019 Oct 29.
Article in English | MEDLINE | ID: mdl-31660911

ABSTRACT

BACKGROUND: To better understand and promote public health, participatory research with Indigenous peoples represents recommended practice, worldwide. However, due to the different ways such research is referred to, described, and used, it is unclear what might (and might not) warrant the term when collaborating with Indigenous peoples. As such, this article expands conceptual understandings of participatory research with Indigenous peoples, across timelines and regions. METHOD: Following a systematic search of 29 academic databases in April 2018, a lexical analysis of the methods sections was conducted, which were sourced from 161 publications across 107 journals. RESULTS: The active involvement of Indigenous peoples in research that is expressly participatory is limited across all project phases. This might be because the ways in which Indigenous peoples were involved throughout were not reported - however, it might also be because Indigenous peoples were not involved in all project phases. Furthermore, descriptions differ by study location and publication timeframe - notably, studies in the region of the Americas chiefly refer to pandemics, surveyors, and art; and those published in the last two decades have given primacy to artifacts of interest. CONCLUSIONS: Findings from this corpus of data suggest participatory research with Indigenous peoples is not always described across different project phases; furthermore, it differs according to study location and publication timeframe. This offers considerable opportunity to further this important research area via alternative methodologies that award primacy to Indigenous expertise and agency.


Subject(s)
Community-Based Participatory Research , Indigenous Peoples , Humans
20.
BMC Public Health ; 19(1): 812, 2019 Jun 27.
Article in English | MEDLINE | ID: mdl-31242897

ABSTRACT

BACKGROUND: Children from refugee backgrounds are less likely to access appropriate health and social care than non-refugee children. Our aim was to identify refugee children's health/wellbeing strengths and needs, and the barriers and enablers to accessing services while preparing for primary and secondary school, in a low socio-economic multicultural community in Australia. METHOD: Ten focus groups were facilitated with Arabic-speaking refugee parents of children aged 2-5 years (n = 11) or in first year secondary school (n = 22); refugee adolescents starting high school (n = 16); and key service providers to refugee families (n = 27). Vignettes about a healthy child and a child with difficulties guided the discussions. Data was thematically analysed and feedback sought from the community via the World Café method. RESULTS: Personal resilience and strong family systems were identified as strengths. Mental health was identified as a complex primary need; and whilst refugees were aware of available services, there were issues in knowing how to access them. Opportunities for play/socialisation were recognised as unmet adolescent needs. Adults spoke of a need to support integration of "old" and "new" cultural values. Parents identified community as facilitating health knowledge transfer for new arrivals; whilst stakeholders saw this as a barrier when systems change. Most parents had not heard of early childhood services, and reported difficulty accessing child healthcare. Preschooler parents identified the family "GP" as the main source of health support; whilst parents of adolescents valued their child's school. Health communication in written (not spoken) English was a significant roadblock. Differences in refugee family and service provider perceptions were also evident. CONCLUSIONS: Refugee families face challenges to accessing services, but also have strengths that enable them to optimise their children's wellbeing. Culturally-tailored models of care embedded within GP services and school systems may assist improved healthcare for refugee families.


Subject(s)
Child Health , Child Welfare , Health Services Accessibility , Needs Assessment , Refugees , Adolescent , Adult , Australia , Child , Child, Preschool , Cultural Diversity , Female , Focus Groups , Humans , Male , Mental Health , Parents/psychology , Poverty , Qualitative Research , Refugees/psychology , Refugees/statistics & numerical data , Schools
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