Ableism, human rights, and the COVID-19 pandemic : healthcare-related barriers experienced by deaf people in Aotearoa New Zealand

The COVID-19 pandemic significantly affected global healthcare access and exacerbated pre-pandemic structural barriers. Literature on disabled people’s experiences accessing healthcare is limited, with even less framing healthcare access as a human rights issue. This study documents and critically analyses Deaf people’s healthcare access experiences in Aotearoa New Zealand during the COVID-19 pandemic. Eleven self-identified Deaf individuals participated in semi-structured videoconferencing interviews. Discourse analysis was applied to participant narratives with discourses juxtaposed against a human rights analysis. Barriers influencing healthcare access included: (1) the inability of healthcare providers to communicate appropriately, including a rigid adherence to face mask use; (2) cultural insensitivity and limited awareness of Deaf people’s unique needs; and (3) the impact of ableist assumptions and healthcare delaying care. Barriers to healthcare access represent consecutive breaches of rights guaranteed under the United Nations Convention on the Rights of Persons with Disabilities (CRPD). Such breaches delay appropriate healthcare access and risk creating future compounding effects. Action is required to address identified breaches: (1) The CRPD should also underpin all health policy and practice development, inclusive of pandemic and disaster management responsiveness. (2) Health professionals and support staff should be trained, and demonstrate competency, in Deaf cultural awareness and sensitivity

Mind the gap between policy imperatives and service provision: a qualitative study of the process of respiratory service development in England and Wales

The research was funded by the National Institute for Health Research Service Delivery and Organisation Programme. SDO/99/2005.Background: Healthcare systems globally are reconfiguring to address the needs of people with long-term conditions such as respiratory disease. Primary Care Organisations (PCOs) in England and Wales are charged with the task of developing cost-effective patient-centred local models of care. We aimed to investigate how PCOs in England and Wales are reconfiguring their workforce to develop respiratory services, and the background factors influencing service redesign. Methods: Semi-structured qualitative telephone interviews with the person(s) responsible for driving respiratory service reconfiguration in a purposive sample of 30 PCOs. Interviews were recorded, transcribed, coded and thematically analysed. Results: We interviewed representatives of 30 PCOs with diverse demographic profiles planning a range of models of care. Although the primary driver was consistently identified as the need to respond to a central policy to shift the delivery of care for people with long-term conditions into the community whilst achieving financial balance, the design and implementation of services were subject to a broad range of local, and at times serendipitous, influences. The focus was almost exclusively on the complex needs of patients at the top of the long-term conditions (LTC) pyramid, with the aim of reducing admissions. Whilst some PCOs seemed able to develop innovative care despite uncertainty and financial restrictions, most highlighted many barriers to progress, describing initiatives suddenly shelved for lack of money, progress impeded by reluctant clinicians, plans thwarted by conflicting policies and a PCO workforce demoralised by job insecurity. Conclusion: For many of our interviewees there was a large gap between central policy rhetoric driving workforce change, and the practical reality of implementing change within PCOs when faced with the challenges of limited resources, diverse professional attitudes and an uncertain organisational context. Research should concentrate on understanding these complex dynamics in order to inform the policymakers, commissioners, health service managers and professionals.Publisher PDFPeer reviewe

The experience of accessing healthcare for people with rare disorders

Rare disorders (RDs) are classified as low-prevalence health conditions (1); however, collectively, 6% of the world's population have a least one diagnosed RD; this reflects the prevalence of RDs in Aotearoa New Zealand. Amongst this population, approximately 50% are children (2). Given issues with diagnosing RDs, the true prevalence may be considerably higher. Similarities across RDs include the involvement of multiple medical specialities, body sites, condition chronicity, limited treatment options, and certain psychosocial risk factors. The burden of having a RD is high, resulting in concomitant disability and additional health and disability service need (3, 4). This scoping review will examine the impact of healthcare access and delivery on those with a diagnosed RD

Perceptions of underlying practice hierarchies: Who is managing my care?

Abstract Background The introduction of new health professional roles, such as that of the nurse practitioner and pharmacist prescriber in primary health care can lead to changes in health service delivery. Consumers, having used these roles, often report high satisfaction. However, there is limited knowledge of how these individuals position nurse practitioner and pharmacist prescriber roles within existing practice structures. Methods Semi-structured interviews were conducted with 21 individuals receiving services from these practitioners in New Zealand primary health care. Interviews were recorded and transcribed verbatim for thematic analysis. Results Participant views reflect established practice hierarchies, placing advanced practitioners ‘below’ general practitioners. Participants are unable to articulate what it was about these practitioners that meant they operated at lower tiers and often considered practitioners to act as ‘their doctor’. They also highlight structural barriers impairing the ability of these providers to operate within their full scope of practice. Conclusions While seeing value in the services they receive, consumers are often unable to position nurse practitioner and pharmacist prescriber roles within health system contexts or to articulate how they value their practitioner’s skills. Embedded structural barriers may be more visible to consumers than their interactions with the health system suggest. This may influence peoples’ ability to receive intended or optimal health services. Consumer ‘health professional literacy’ around the functions of distinct health practitioners should be supported so that they may make informed service provision choices

Occupying 'in-hospitable' spaces: Parental/primary-caregiver perceptions of the impact of repeated hospitalisation in children under two years of age.

The experience of having a child hospitalised is stressful and disrupts families in myriad ways; however, the experiences of parents/caregivers who encounter repeated admissions of a child with acute lower respiratory infections are under-researched. This project aims to explore these experiences, from a qualitative perspective, using the philosophical tenets of reflective lifeworld research. The research included 14 face-to-face interviews with parents, grandparents, or primary caregivers, of children who, whilst under two years of age, were admitted to hospital multiple times with a lower respiratory infection diagnosis. Many of the participants were from Māori or Samoan ethnic backgrounds. The findings of this single site study revealed that these parents/caregivers' experiences were characterised by feelings of powerlessness, offering descriptions of hospitals as harsh and difficult places to reside, they are 'in-hospitable'. The findings suggest that repeated hospitalisations created a cycle of stressful experiences that impacted both familial relationships and interactions with society. This study draws attention to this previously obscured population group, and calls health care practitioners and policy advisors to engage differently over issues involving families in similar positions

Global Implications From the Rise and Recession of Telehealth in Aotearoa New Zealand Mental Health Services During the COVID-19 Pandemic: Mixed Methods Study

BackgroundThe COVID-19 pandemic accelerated the adoption of telehealth services for remote mental health care provision. Although studies indicate that telehealth can enhance the efficiency of service delivery and might be favored or even preferred by certain clients, its use varied after the pandemic. Once the pandemic-related restrictions eased, some regions curtailed their telehealth offerings, whereas others sustained them. Understanding the factors that influenced these decisions can offer valuable insights for evidence-based decision-making concerning the future of telehealth in mental health services. ObjectiveThis study explored the factors associated with the uptake of and retreat from telehealth across a multiregional outpatient mental health service in Aotearoa New Zealand. We aimed to contribute to the understanding of the factors influencing clinicians’ use of telehealth services to inform policy and practice. MethodsApplying an interpretive description methodology, this sequential mixed methods study involved semistructured interviews with 33 mental health clinicians, followed by a time-series analysis of population-level quantitative data on clinician appointment activities before and throughout the COVID-19 pandemic. The interviews were thematically analyzed, and select themes were reframed for quantitative testing. The time-series analysis was conducted using administrative data to explore the extent to which these data supported the themes. In total, 4,117,035 observations were analyzed between October 1, 2019, and August 1, 2022. The findings were then synthesized through the rereview of qualitative themes. ResultsThe rise and recession of telehealth in the study regions were related to 3 overarching themes: clinician preparedness and role suitability, population determinants, and service capability. Participants spoke about the importance of familiarity and training but noted differences between specialist roles. Quantitative data further suggested differences based on the form of telehealth services offered (eg, audiovisual or telephone). In addition, differences were noted based on age, gender, and ethnicity; however, clinicians recognized that effective telehealth use enabled clinicians’ flexibility and client choice. In turn, clinicians spoke about system factors such as telehealth usability and digital exclusion that underpinned the daily functionality of telehealth. ConclusionsFor telehealth services to thrive when they are not required by circumstances such as pandemic, investment is needed in telehealth training for clinicians, digital infrastructure, and resources for mental health teams. The strength of this study lies in its use of population-level data and consideration of a telehealth service operating across a range of teams. In turn, these findings reflect the voice of a variety of mental health clinicians, including teams operating from within specific cultural perspectives

Mental Health Client Experiences of Telehealth in Aotearoa New Zealand During the COVID-19 Pandemic: Lessons and Implications

BackgroundThe COVID-19 pandemic and consequent lockdowns disrupted mental health service delivery worldwide, accelerating the adoption of telehealth services to provide care continuity. Telehealth-based research largely highlights the value of this service delivery method for a range of mental health conditions. However, only limited research exists exploring client perspectives of mental health services delivered via telehealth during the pandemic. ObjectiveThis study aimed to increase understanding of the perspectives of mental health clients around services provided via telehealth over the 2020 COVID-19 lockdown in Aotearoa New Zealand. MethodsInterpretive description methodology underpinned this qualitative inquiry. Semistructured interviews were conducted with 21 individuals (15 clients and 7 support people; 1 person was both a client and support person) to explore their experiences of outpatient mental health care delivered via telehealth during the COVID-19 pandemic in Aotearoa New Zealand. A thematic analysis approach supported by field notes was used to analyze interview transcripts. ResultsThe findings reveal that mental health services delivered via telehealth differed from those provided in person and led some participants to feel they need to manage their own care more actively. Participants highlighted several factors affecting their telehealth journey. These included the importance of maintaining and building relationships with clinicians, the creation of safe spaces within client and clinician home environments, and clinician readiness in facilitating care for clients and their support people. Participants noted weaknesses in the ability of clients and clinicians to discern nonverbal cues during telehealth conversations. Participants also emphasized that telehealth was a viable option for service delivery but that the reason for telehealth consultations and the technicalities of service delivery needed to be addressed. ConclusionsSuccessful implementation requires ensuring solid relationship foundations between clients and clinicians. To safeguard minimum standards in delivering telehealth-based care, health professionals must ensure that the intent behind telehealth appointments is clearly articulated and documented for each person. In turn, health systems must ensure that health professionals have access to training and professional guidance to deliver effective telehealth consultations. Future research should aim to identify how therapeutic engagement with mental health services has changed, following a return to usual service delivery processes