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In this paper we explore the experiences of mothers of young adults with Down syndrome as their daughters and sons transition from schooling to adult life. These transitions occurred in a society shaped by neo-liberal political reform that commenced in the mid-1980s. The hallmarks of education are now expressed in terms of national achievement standards, aligned with the goals of economic gain, and efficiency in government services. In this climate being called disabled is a bad thing. For the mothers participating in this research, the roles and tasks associated with disability created a map of expectation for themselves and their children. Speaking with authority and reclaiming control so as to undertake their role in the longer term was to be as much a part of the transition from school as were the changes experienced by their daughters and sons. The shortcomings identified through the mothers' narratives signal a need for clarity and cohesion in professional and support processes for their disabled family members. The position is offered that the potential of the secondary school as a place for school-linked service integration and support warrants consideration. Understanding the value and impact of outcomes this model brings for a wide range of vulnerable school leavers would enhance the efforts around individuals such as those whose transition is discussed in this article.

Dementia-related sleep changes can lead to disruptions among families living with dementia which can jeopardise carers' wellbeing and ability to provide support. This research explores and represents the sleep of family caregivers across the trajectory of caring, before, during, and after the key period of their care recipient moving into residential care. The focus of this paper is viewing dementia caregiving as a trajectory, characterised by care needs which change over time. Semi-structured interviews were conducted with 20 carers whose family member with dementia had transitioned into residential care within the prior 2 years. Themes constructed from these interviews indicated that sleep was linked to earlier life course patterns as well as to significant moments of transition in the caregiving journey. As dementia progressed, carers' sleep progressively worsened in relation to the less predictable nature of dementia-symptoms, difficulty maintaining routines, and constant responsibilities creating a state of high alert. Carers attempted to facilitate better sleep and wellbeing for their family member, often sacrificing their own self-care. Around the care transition period, some cares reported not realising how sleep deprived they were; for others the busy momentum continued. After the transition, many carers acknowledged that they were exhausted, although many had not realised this while providing home-based care. Post-transition, many carers reported ongoing sleep disruptions associated with poor sleep habits established whilst caring, insomnia or nightmares and grief. Carers were optimistic that their sleep would improve with time and many were enjoying sleeping according to their own preferences. The sleep experience of family carers is unique and includes tensions between their essential need for sleep and the experience of care as self-sacrifice. Findings have implications for timely support and interventions for families living with dementia. [ABSTRACT FROM AUTHOR]

Information about traditional end-of-life care customs was gathered from Māori New Zealanders. How health and palliative care services helped or hindered families to use their customs within different health care settings was also examined. The use of the digital story-telling method to create personalised short videos is reported on in this paper. Kaupapa Māori Research and social constructivist methods were employed to conduct face-to-face interviews with 61 Māori families (including someone with a life limiting illness), plant medicine healers, spiritual practitioners and health and palliative care providers. Of these, sixteen family representatives participated in a digital story telling workshop. A Kaupapa Māori thematic analysis confirmed earlier findings that the digital storytelling method was a useful technique to record Māori traditional caregiving customs. Subject material aligned with four dominant themes; (1) 'whānau manaaki', where the mana (value, prestige, authority) of family was given visibility and was celebrated; (2) the 'importance of wairuatanga' provided insight into the place of Māori spirituality, (3) the 'importance of rongoā rākau' highlighted the role of traditional plant medicines; and (4) the 'cultural support provided by health professionals' reflected the care values health and palliative Q3 care professionals should ideally adopt. [ABSTRACT FROM AUTHOR]

New public health approaches to palliative care highlight the role of communities in care, yet there is little evidence of studies on community-led initiatives in the palliative care context. Therefore, the aim of this study, which took place in Auckland, New Zealand, was to (1) explore Pacific family carers' views on what they need to feel supported as they care for older family members at the end of life and (2) to devise a resource that reflects their views that may be used to raise community awareness about these needs. This was achieved using a Participatory Action Research (PAR) framework in which a focus group was carried out and a work group formed to implement the focus group's recommendations that were informed by a thematic analysis of the focus group data. The analysis resulted in the foregrounding of four themes, with the focus of this paper being on the 4th theme, the centrality of spirituality for a group of Pacific caregivers. This emphasis was chosen due to it being an underexplored topic in the palliative care literature. Co-creating resources based on research with community members allows for the development of tailored approaches of significance to that community, in this instance, a music video. [ABSTRACT FROM AUTHOR]

It is well documented that Health care assistants (HCAs) provide the most hands‐on care to residents in aged care facilities, and play a critical role in the provision of care to dementia residents. Over the last 25 years, a philosophy of person‐centred care has become the preferred approach to care and this has meant that HCAs are encouraged to get to know the resident very well. This paper reports the experiences of HCAs in caring for people at end‐of‐life, identifies the skills required for their work and examines the education provided against these skills. Semi‐structured interviews were conducted in 49 facilities (n = 34) across New Zealand and data analysed thematically, with the aim of critically examining the adequacy of education for health care assistants which meets their needs within a person‐centred environment. The results confirm that the skills include traditional tasks of care (showering, feeding, toileting, and dressing) but the increasingly important communication and de‐escalation skills, both verbal and non‐verbal, have become central to their care skills. Education provided has not sufficiently shifted focus to include these more complex skills. Provision of educations that acknowledges the increased complexities of their role needs to be provided. As well, facilities need to be challenged to reconsider the HCA's position in the facility care tem. [ABSTRACT FROM AUTHOR]

Purpose The purpose of this paper is to outline the development of an evidence-based training and support course for caregivers of children with foetal alcohol spectrum disorder (FASD) in New Zealand, and a brief evaluation undertaken. The seven-week caregiver training course takes an empowerment and advocacy orientation, and the aim is to assist caregivers who are caring for children with, or suspected to have FASD, develop greater resilience and strategies to help their families live successfully with impairments in a disabling society.Design/methodology/approach A total of 13 parents and caregivers received a seven times two-hour weekly group programme of talks, exercises and case study discussions focused on the following objectives: an increased knowledge of FASD; an increased knowledge of successful strategies and interventions that can be used to help families; and having an opportunity to foster strong peer-support relationships with others who share the lived experience of FASD. A brief interview-based evaluation was undertaken to ascertain caregivers' views of the course, its benefits and limitations.Findings Caregivers valued both the content and process of the training course. They highlighted that strength of the training was the delivery by experienced, professionally trained caregivers of children with FASD. They valued the opportunity to spend time with peers in similar circumstances who understood the challenges of parenting a child with FASD.Originality/value A short evidence-based specialist training course for parents and caregivers with an empowerment and peer-support orientation is beneficial to parenting children with FASD. [ABSTRACT FROM AUTHOR]

Introduction: The usual output following health consultations from paediatric services is a clinical letter to the referring professional or primary care provider, with a copy sent to the patient's caregiver. There is little research on how patients and caregivers perceive the letter content. We aimed to: first understand child, young people and caregiver experiences of and preferences for receiving a health feedback letter about the child/young person's health measures within a healthy lifestyle programme; and second to provide a set of recommendations for designing letters to children, young people and their families within a healthy lifestyle programme. Methods: This qualitative study, informed by Kaupapa Māori principles, included focus groups of children aged 5–11 years and young people aged 12–18 years who were participants in a healthy lifestyle programme in Taranaki, Aotearoa New Zealand and of their respective caregivers (total n = 47). Discussions were audio‐recorded, transcribed and analysed using thematic analysis. Findings: Key themes were identified: letters sometimes acted as 'discourses of disempowerment'—some participants experienced a lack of safety, depersonalisation with medical jargon and 'feeling like a number'. Participants described the need for acknowledgement and affirmation in written communication—health feedback should include validation, choice regarding content, respectful tone and a strengths‐based approach to health messages. Interpretation: Letters to referrers, copied to families, can be perceived as disempowering, and participant and caregiver perspectives of content should be considered. This study challenges conventional practice in communicating health feedback with broader implications for written communication in healthcare. We propose separate letters aimed at the child/young person and their caregiver that offer choice in the information they receive. The administrative burden of multiple letters can be mitigated by advances in digital health. Patient Contribution: This study originated in response to feedback from service users that current health feedback was not meeting their needs or expectations. Patient perspectives, especially from children, are rarely considered in the generation of clinic letters from health professionals. Participants were child participants in the community‐based clinical service and their caregivers, and care was taken to represent the demographic backgrounds of service users. Collection and interpretation of Māori data were led by researchers who were local community members to ensure prioritisation and preservation of participant voice. Where possible, results are illustrated in the text by direct quotes from participants, whose identities are protected with a pseudonym. [ABSTRACT FROM AUTHOR]

It is important to understand how consumers (person with stroke/family member/carer) and health workers perceive stroke care services. Consumers and health workers from across New Zealand were surveyed on perceptions of stroke care, access barriers, and views on service centralisation. Quantitative data were summarised using descriptive statistics whilst thematic analysis was used for free-text answers. Of 149 consumers and 79 health workers invited to complete a survey, 53 consumers (36.5%) and 41 health workers (51.8%) responded. Overall, 40/46 (87%) consumers rated stroke care as 'good/excellent' compared to 24/41 (58.6%) health workers. Approximately 72% of consumers preferred to transfer to a specialised hospital. We identified three major themes related to perceptions of stroke care: 1) 'variability in care by stage of treatment'; 2) 'impact of communication by health workers on care experience'; and 3) 'inadequate post-acute services for younger patients'. Four access barrier themes were identified: 1) 'geographic inequities'; 2) 'knowing what is available'; 3) 'knowledge about stroke and available services'; and 4) 'healthcare system factors'. Perceptions of stroke care differed between consumers and health workers, highlighting the importance of involving both in service co-design. Improving communication, post-hospital follow-up, and geographic equity are key areas for improvement. Provision of detailed information on stroke recovery and available services in the community is recommended. Improvements in the delivery of post-hospital stroke care are required to optimise stroke care, with options including routine phone follow up appointments and wider development of early supported discharge services. Stroke rehabilitation services should continue to be delivered 'close to home' to allow community integration. Telehealth is a likely enabler to allow specialist urban clinicians to support non-urban clinicians, as well as increasing the availability and access of community rehabilitation. [ABSTRACT FROM AUTHOR]

Background: In the context of a sudden or unexpected event, people with a life-limiting illness and their family caregivers may be dependent on emergency ambulance services Aim: To explore bereaved family members' experiences of emergency ambulance care at the end of life. Design: A qualitative study using reflexive thematic analysis of data collected from semi-structured phone interviews. Setting/Participants: A purposive sample of 38 family caregivers identified from a database of deaths in Aotearoa, New Zealand. Results: Emergency ambulance personnel assist, inform and reassure patients and family caregivers managing distressing symptoms, falls, infections, unexpected events and death itself. Family members and patients are aware of the pressure on emergency services and sometimes hesitate to call an ambulance. Associating ambulances with unwanted transport to hospital is also a source of reluctance. Conclusions: The generalist palliative care provided by emergency ambulance personnel is a vital service for patients in the last year of life, and their caregivers. This must be acknowledged in palliative care policy and supported with training, specialist consultation and adequate resources. [ABSTRACT FROM AUTHOR]

The objective of this study was to understand how participants referred to a childhood obesity intervention programme prefer to receive health information, and secondly, to determine acceptability of digital technologies such as a social media platform or IT application for programme engagement. This study includes a subset of interviews (n = 64) of a wider study of the barriers and facilitators of engagement in a multidisciplinary healthy lifestyle programme for childhood obesity, based in Taranaki, Aotearoa/New Zealand. The topics of health information and social media and/or app use were covered in 53 and 30 interviews, respectively. Participants were parents and caregivers of children and adolescents referred to the programme, and interviews were mostly conducted in family homes. Findings showed that participants consulted a range of people, places and resources for information about their health, notably the internet, health professionals, and family and friends. Participants reported using the internet to complement or supplement information from health professionals. A strong relationship with health professionals built on trust was important. Use of digital technologies such as an IT application or social media platform for engagement with the programme was generally acceptable, with the caveat that this did not replace face‐to‐face communication with their primary care provider. In conclusion, the high usage of digital sources of health information requires accurate and reliable information. Digital technologies such as IT applications or social media platforms may have a role in terms of supplementing the patient journey; however, the importance of in‐person communication and an ongoing relationship with a health professional or practice remains paramount. [ABSTRACT FROM AUTHOR]

Objectives: To assess the impact of providing care and conditions of care on psychological wellbeing among older informal caregivers following the initial period of COVID-19 pandemic restrictions in Aotearoa New Zealand. Methods: Data were from population-based cohorts of older adults participating in the 2020 Health, Work and Retirement longitudinal survey (n = 3839, 17.4% informal caregivers). Changes in symptoms of depression and anxiety over 2018–2020 surveys associated with sociodemographic factors, caregiving, cohabitation with the care recipient, assistance provided with activities of daily living, support in providing care, and opportunity cost of care were assessed. Results: Increased depression, but not anxiety, was associated with providing informal care. Among caregivers, lower living standards and cohabitation were associated with increased depression. Lower living standards, unemployment, and lower help from friend/family networks were associated with increased anxiety. Discussion: Economic hardship and social capital provide targets for supporting psychological wellbeing of older caregivers during periods of pandemic restrictions. [ABSTRACT FROM AUTHOR]

Background: Family caregivers provide the majority of palliative care. The impact of family caregiving on employment and finances has received little research attention in the field of palliative care. Aim: The aim of this study was to explore perspectives and experiences of combining paid employment with palliative care family caregiving, and to assess the availability and suitability of employment support across three countries – the United Kingdom (UK), Aotearoa New Zealand and Canada. Design: A qualitative descriptive study design was used. Semi-structured interviews were held with 30 key informants with professional or personal experience in palliative care from the UK (n = 15), Aotearoa New Zealand (n = 6) and Canada (n = 9). Interviews were recorded, transcribed and analysed using the principles of thematic analysis. Results: Four main themes were identified: (1) significant changes to working practices are required to enable end of life family carers to remain in work; (2) the negative consequences of combining caregiving and employment are significant, for both patient and carer; (3) employer support for working end of life caregivers is crucial but variable and; (4) national, federal and government benefits for working end of life family carers are necessary. Conclusion: Supporting carers to retain employment whilst providing care has potential benefits for the patient at end of life, the caregiver, and the wider economy and labour market. Employers, policymakers and governments have a role to play in developing and implementing policies to support working carers to remain in employment. [ABSTRACT FROM AUTHOR]

Objectives: There are mixed results from studies of COVID‐19‐related anxiety. We explored older people's perspectives on anxiety and support during lockdown. Methods: We thematically analysed 730 written comments from older community‐dwelling adults aged 55‐85 years in Aotearoa/New Zealand. Results: Despite some anxiety during lockdown, for those who were retired, working at home or receiving wage subsidies, the experience was very enjoyable. Whether living alone or in households, anxieties were largely ameliorated by a sense of support from family, fellow citizens and government. In contrast, essential workers, those who lost employment and informal carers did not feel sufficient community support to alleviate their anxiety. Conclusions: Concerns about the plight of older people focus on stereotypes of isolated elders, ignoring the needs of workers and carers. The inductive approach taken to this study provided useful information about the success of supportive measures and highlighted the need to broaden the focus of concern. [ABSTRACT FROM AUTHOR]

Aim: Children generally have a milder CoVID‐19 disease course and better prognosis than adults. Many countries have closed schools as part of measures to limit transmission and this has had a considerable impact on children world‐wide. This includes New Zealand (NZ), where rates of CoVID‐19 have been very low. The aims of this study were to investigate parents' and caregivers' knowledge of CoVID‐19 in children, to understand their levels of concern and to identify their most trusted sources of information. Methods: Participants were recruited via NZ parenting support and interest groups on Facebook.com. Knowledge was assessed by way of a self‐administered questionnaire during the 10 days prior to NZ schools reopening on 18 May 2020. Results: Of the 1191 study participants, 721 (60%) expressed some level of worry (14.5% very or extremely worried) that their child would catch CoVID‐19 at school. A high proportion (79%, 941) thought it likely or very likely that their child would catch CoVID‐19 at school if there were to be widespread community transmission. Fear scores for CoVID‐19 were generally high, and 828 (80%) of participants said they would vaccinate their child if a newly developed vaccine were available. Conclusions: Parents and caregivers were generally fearful of their children acquiring CoVID‐19 at school. This was despite messaging from multiple trusted sources that transmission in schools is unlikely, and the number of NZ CoVID‐19 cases being extremely low. These findings have implications for policy development and public health messaging both in NZ and in countries with ongoing community transmission of CoVID‐19. [ABSTRACT FROM AUTHOR]

The study aimed to investigate the association between caregiver experiences of racial discrimination and physical and emotional health outcomes for their children and to explore potential pathway variables in this relation. We analysed data from two instances of the New Zealand Health Survey that provide nationally representative data for children and adults, with high response rates for each of the major ethnic groupings (Indigenous Māori, Pacific, Asian, and European/Other). Questionnaires from the primary caregiver and their child (5 to 14 years) were linked to create n = 2,958 child-primary caregiver dyads in the 2006/07 Survey and n = 2,632 dyads in the 2011/12 Survey. Children whose caregivers reported any experience of racial discrimination had poorer mental health, self-esteem, and behaviour scores on the CHQ PF-28 scale, even after adjustment for caregiver sociodemographic variables. Multivariable models identified a worsening in child emotional health as the number of reported racism experiences increased. Caregiver experiences of racism were not associated with medicated asthma in their children. Multivariable models suggest that caregiver psychological distress may be a pathway linking vicarious racism to poorer child emotional health. [ABSTRACT FROM AUTHOR]

In New Zealand, as in other industrialised societies, an ageing population has led to an increased need for palliative care services. A cross‐sectional postal survey of bereaved carers was conducted in order to describe both bereaved carer experience of existing services in the last 3 months of life, and to identify factors associated with overall satisfaction with care. A self‐complete questionnaire, using a modified version of the Views of Informal Carers – Evaluation of Services (VOICES) instrument was sent to 4,778 bereaved carers for registered deceased adult (>18yrs) patients in one district health board (DHB) for the period between November 2015 and December 2016. Eight hundred and twenty‐six completed questionnaires were returned (response rate = 21%). The majority of respondents (83.8%) rated their overall satisfaction with care (taking all care during the last 3 months into account), as high. However, satisfaction varied by care setting. Overall satisfaction with care in hospice was significantly higher compared to other settings. Additionally, patients who died in hospice were more likely to be diagnosed with cancer and under 65 years of age. The factors associated with overall satisfaction with care in the last 2 days of life were: caregiver perceptions of treatment with dignity and respect; adequate privacy; sufficient pain relief and decisions in line with the patient's wishes. A more in‐depth exploration is required to understand the quality of, and satisfaction with, care in different settings as well as the factors that contribute to high/low satisfaction with care at the end‐of‐life. [ABSTRACT FROM AUTHOR]

Background: The oral health of pre-schoolers is garnering international as a crisis as good oral health is a key precursor to positive health outcomes. Internationally, and within Aotearoa/New Zealand, responses been restricted to those based in a medical model and the commercialisation of oral health. Absent from existing commentary are the lived realities of parents/caregivers beliefs, attitudes and responsiveness, or lack of, to the oral health of pre-schoolers. Methods: The researcher undertook a discursive analysis of parents/caregivers narratives to understand the barriers to engaging in effective protective behaviours. The 15 focus groups were conducted in urban and rural locations across Aotearoa/New Zealand. Results: A discursive analysis revealed several pervasive discourses, including 'second chance' and 'enjoyment' discourses, and systems-related deficits that act as barriers to engaging in good oral healthcare practices. Conclusions: The analysis demonstrates the benefit of placing the lived experiences of parents/caregivers as central to the development of oral health interventions. There is a need to link oral health data with primary care data and to distribute accurate oral health information to support parents'/caregivers' decision making. This research reveals several pervasive discourses and systems-related deficits that provide a fertile ground for future public health responsiveness. [ABSTRACT FROM AUTHOR]