Journal Articles
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Item Multi-modal sleep intervention for community-dwelling people living with dementia and primary caregiver dyads with sleep disturbance: protocol of a single-arm feasibility trial(PeerJ Inc., 2023-01-01) Verma S; Varma P; Brown A; Bei B; Gibson R; Valenta T; Pietsch A; Cavuoto M; Woodward M; McCurry S; Jackson ML; Keogh JBackground. Disturbed sleep is common among people living with dementia and their informal caregivers, and is associated with negative health outcomes. Dyadic, multi-modal interventions targeting caregiver and care-recipient sleep have been recommended yet remain limited. This protocol details the development of a singlearm feasibility trial of a multi-modal, therapist-led, six-week intervention targeting sleep disturbance in dyads of people living with dementia and their primary caregiver. Methods. We aim to recruit 24 co-residing, community-dwelling dyads of people living with dementia and their primary informal caregiver (n D 48) with sleep concerns (Pittsburgh Sleep Quality Index ≥5 for caregivers, and caregiver-endorsed sleep concerns for the person living with dementia). People who live in residential care settings, are employed in night shift work, or are diagnosed with current, severe mental health conditions or narcolepsy, will be excluded. Participants will wear an actigraph and complete sleep diaries for two weeks prior, and during the last two weeks, of active intervention. The intervention is therapist-led and includes a mix of weekly small group video sessions and personalised, dyadic sessions (up to 90 min each) over six weeks. Sessions are supported by a 37-page workbook offering strategies and spaces for reflections/notes. Primary feasibility outcomes are caregiver: session attendance, attrition, and self-reported project satisfaction. Secondary outcomes include dyadic self-reported and objectively-assessed sleep, depression and anxiety symptoms, quality of life, and social support. Self-report outcomes will be assessed at pre- and postintervention. Discussion. If feasible, this intervention could be tested in a larger randomised controlled trial to investigate its efficacy, and, upon further testing, may potentially represent a non-pharmacological approach to reduce sleep disturbance among people living with dementia and their caregivers.Item Improving continence management for people with dementia in the community in Aotearoa, New Zealand: Protocol for a mixed methods study.(Public Library of Science (PLoS), 2023-07-18) Burholt V; Peri K; Awatere S; Balmer D; Cheung G; Daltrey J; Fearn J; Gibson R; Kerse N; Lawrence AM; Moeke-Maxwell T; Munro E; Orton Y; Pillai A; Riki A; Williams LA; Harding ABACKGROUND: The number of people living with dementia (PLWD) in Aotearoa New Zealand (NZ) was estimated at 96,713 in 2020 and it is anticipated that this number will increase to 167,483 by 2050, including an estimated 12,039 Māori (indigenous people of NZ) with dementia. Experiencing urinary incontinence (UI) or faecal incontinence (FI) is common for PLWD, particularly at the later stages of the disease. However, there is no robust estimate for either prevalence or incidence of UI or FI for PLWD in NZ. Although caregivers rate independent toilet use as the most important activity of daily living to be preserved, continence care for PLWD in the community is currently not systematised and there is no structured care pathway. The evidence to guide continence practice is limited, and more needs to be known about caregiving and promoting continence and managing incontinence for PLWD in the community. This project will seek to understand the extent of the challenge and current practices of health professionals, PLWD, caregivers and family; identify promising strategies; co-develop culturally appropriate guidelines and support materials to improve outcomes; and identify appropriate quality indicators so that good continence care can be measured in future interventions. METHODS AND ANALYSIS: A four-phase mixed methods study will be delivered over three years: three phases will run concurrently, followed by a fourth transformative sequential phase. Phase 1 will identify the prevalence and incidence of incontinence for PLWD in the community using a cohort study from standardised home care interRAI assessments. Phase 2 will explore continence management for PLWD in the community through a review of clinical policies and guidance from publicly funded continence services, and qualitative focus group interviews with health professionals. Phase 3 will explore experiences, strategies, impact and consequences of promoting continence and managing incontinence for PLWD in the community through secondary data analysis of an existing carers' study, and collecting new cross-sectional and longitudinal qualitative data from Māori and non-Māori PLWD and their caregivers. In Phase 4, two adapted 3-stage Delphi processes will be used to co-produce clinical guidelines and a core outcome set, while a series of workshops will be used to co-produce caregiver resources.Item Participants' and caregivers' experiences of a multidisciplinary programme for healthy lifestyle change in Aotearoa/New Zealand: a qualitative, focus group study.(BMJ Publishing Group Ltd, 2021-05-11) Anderson YC; Wild CEK; Hofman PL; Cave TL; Taiapa KJ; Domett T; Derraik JGB; Cutfield WS; Grant CC; Willing EJObjective Child and adolescent obesity continues to be a major health issue internationally. This study aims to understand the views and experiences of caregivers and participants in a child and adolescent multidisciplinary programme for healthy lifestyle change. Design Qualitative focus group study. Setting Community-based healthy lifestyle intervention programme in a mixed urban–rural region of Aotearoa/New Zealand. Participants Parents/caregivers (n=6) and children/adolescents (n=8) who participated in at least 6 months of an assessment and weekly session, family-based community intervention programme for children and adolescents affected by obesity. Results Findings covered participant experiences, healthy lifestyle changes due to participating in the programme, the delivery team, barriers to engagement and improvements. Across these domains, four key themes emerged from the focus groups for participants and their caregivers relating to their experience: knowledge-sharing, enabling a family to become self-determining in their process to achieve healthy lifestyle change; the importance of connectedness and a family-based programme; the sense of a collective journey and the importance of a nonjudgemental, respectful welcoming environment. Logistical challenges and recommendations for improvement were also identified. Conclusions Policymakers need to consider the experiences of participants alongside quantitative outcomes when informing multidisciplinary intervention programmes for children and adolescents affected by obesity. Trial registration number Australian New Zealand Clinical Trials Registry (ANZCTR):12611000862943; Post-results.Item Who really decides? Feeding decisions 'made' by caregivers of children with cerebral palsy.(AOSIS (Pty) Ltd., 2024-03-18) Naidoo L; Pillay M; Naidoo UBACKGROUND: There are no definitive guidelines for clinical decisions for children with cerebral palsy (CP) requiring enteral feeds. Traditionally, medical doctors made enteral feeding decisions, while patients were essentially treated passively within a paternalistic 'doctor knows best' approach. Although a more collaborative approach to decision-making has been promoted globally as the favoured model among healthcare professionals, little is known about how these decisions are currently made practically. OBJECTIVES: This study aimed to identify the significant individuals, factors and views involved in the enteral feeding decision-making process for caregivers of children with CP within the South African public healthcare sector. METHOD: A single-case research design was used in this qualitative explorative study. Data were collected using semi-structured interviews and analysed using reflexive thematic analysis. RESULTS: Four primary individuals were identified by the caregivers in the decision-making process: doctors, speech therapists, caregivers' families and God. Four factors were identified as extrinsically motivating: (1) physiological factors, (2) nutritional factors, (3) financial factors and (4) environmental factors. Two views were identified as intrinsically motivating: personal beliefs regarding enteral feeding tubes, and feelings of fear and isolation. CONCLUSION: Enteral feeding decision-making within the South African public healthcare sector is currently still dominated by a paternalistic approach, endorsed by a lack of caregiver knowledge, distinct patient-healthcare provider power imbalances and prescriptive multidisciplinary healthcare dialogues.Contribution: This study has implications for clinical practice, curriculum development at higher education training facilities, and institutional policy changes and development, thereby contributing to the current knowledge and clinical gap(s) in the area.Item Exploring older care recipients' sleep status as a predictor for informal carer distress: evidence from New Zealand's interRAI home care assessment data.(BMJ Publishing Group, 2023-10-24) Gibson R; Abey-Nesbit R; Gander P; Parsons MOBJECTIVES: Understanding factors affecting informal carers' well-being is important to support healthy ageing at home. Sleep disturbances of care recipients are increasingly recognised as affecting the well-being of both parties. This research assesses the relationship between indicators of care recipients' sleep status and carer distress, as well as carer distress with subsequent admission to residential aged care, using prospectively collected Home Care International Residential Assessment Instrument (interRAI-HC) assessment data. PARTICIPANTS: Data were sourced from 127 832 assessments conducted between 2012 and 2019 for people aged 55 years or older who had support from at least one informal carer. The majority (59.4%) of care recipients were female and 59.1% were defined as having cognitive impairment or dementia (CIoD). SETTING: New Zealand. DESIGN: Logistic regression modelling was used to assess the independent relationships between indicators of care recipients' sleep status (difficulty sleeping and fatigue) and primary caregivers' distress (feeling overwhelmed or distressed). Kaplan meier curves illustrated the subsequent relationship between caregiver distress and care recipients' transitions to aged residential care. RESULTS: Care recipients' sleeping difficulty (32.4%) and moderate-severe fatigue (46.6%) were independently associated with caregiver distress after controlling for key demographic and health factors included in the assessment. Distress was reported by 39.9% of informal caregivers and was three times more likely among those supporting someone with a CIoD. Caregiver distress was significantly associated with care recipients' earlier admission into aged residential care. CONCLUSIONS: Indicators of sleep disturbance among care recipients are associated with increased likelihood of carer distress. This has implications for managing the overall home-care situation and long-term care needs, as well as the well-being of both parties. Findings will inform research and development of measures, services and interventions to improve the sleep and waking health of older people, including those with CIoD and family caregivers.Item Telehealth-delivered naturalistic developmental behavioural intervention with and without caregiver acceptance and commitment therapy for autistic children and their caregivers: protocol for a multi-arm parallel group randomised clinical trial.(BMJ Publishing Group Limited, 2023-05-30) McLay L; Emerson LM; Waddington H; van Deurs J; Hunter J; Blampied N; Hapuku A; Macfarlane S; Bowden N; van Noorden L; Rispoli MINTRODUCTION: Timely access to early support that optimises autistic children's development and their caregiver's mental health is critical. Naturalistic developmental behavioural interventions (NDBIs) and acceptance and commitment therapy (ACT) are evidence-based supports that can enhance child learning and behaviour, and adult well-being, respectively. The traditional face-to-face delivery of these approaches is resource intensive. Further, little is known about the benefit of parallel child-focused and caregiver-focused supports. The aims of this trial are to evaluate the effectiveness and social validity of telehealth-delivered, caregiver-implemented, child-focused NDBI and caregiver-focused ACT when delivered alone and in parallel, on autistic children's social communication and caregiver well-being. METHODS AND ANALYSIS: The study will use a randomised, single-blind clinical trial with three parallel arms: NDBI; ACT and ACT+NDBI. We will recruit a minimum of 78, 2-5-year-old autistic children and their families throughout Aotearoa New Zealand. Support will be delivered over 13 weeks using a combination of culturally enhanced web-based modules and online group coaching. Primary outcome variables include children's social communication/engagement with their caregiver as well as caregiver stress and will be evaluated using a repeated measures multivariate analysis of variance. Outcome variables are assessed at baseline (before randomisation), immediately postparticipation and at 3-month follow-up. ETHICS AND DISSEMINATION: The trial is approved by the Health and Disability Ethics Committee (2022 FULL 12058). The findings of this trial will be disseminated through peer-reviewed journals and national and international conference proceedings regardless of the magnitude/direction of effect. Additionally, data will be shared with stakeholder groups, service providers and health professionals. TRIAL REGISTRATION NUMBER: Australian New Zealand Clinical Trials Registry (ACTRN12622001134718).Item Sleep disturbance in caregivers of individuals with Parkinsonism: a systematic review and meta-analysis(BMJ Publishing Group Ltd, 2022-11) Sprajcer M; Owen PJ; Crowther ME; Harper K; Gupta CC; Ferguson SA; Gibson RH; Vincent GEObjectives The global prevalence of Parkinsonism continues to rise given ageing populations. Individuals with Parkinsonism who have moderate or severe symptoms typically require a high level of care, including assistance with activities of daily living. This care is often provided across the 24-hour period by a family member or friend. It is likely that providing care significantly impacts the sleep duration and quality of the caregiver given overnight caring responsibilities, in addition to worry and stress associated with the caregiving role. The aim of this systematic review and meta-analysis was to investigate whether providing care to an individual with Parkinsonism was associated with disturbed caregiver sleep, and to identify associated factors that may contribute to disturbed sleep in this population. Setting Five databases were electronically searched on 30 June 2021 including CINAHL, PubMed, PsycINFO, CENTRAL and EMBASE. Participants Eligibility criteria included a population of caregivers whose care recipient has a form of Parkinsonism. Primary and secondary outcome measures To be included in this systematic review, outcome measures of caregiver sleep (eg, sleep duration, sleep quality) were required. Results Eighteen studies (n=1998) were included. Findings indicated that caregivers of individuals with Parkinsonism typically experience poor sleep quality (mean (95% CI): 5.6 (4.8 to 6.4) points on the Pittsburgh Sleep Quality Index), increased sleep latency and poor sleep efficiency. Conclusions The degree of poor sleep quality was clinically significant. However, further investigation of sleep outcomes is required using sleep measurement tools tailored for this population (eg, measures that capture overnight sleep disruption by care recipient/s). Additionally, there is a need for appropriate individual and societal-level interventions to improve caregiver sleep. PROSPERO registration number CRD42021274529.Item Giving voice to children in research: The power of child-centered constructivist grounded theory methodology(Wiley Periodicals LLC, 2022-08) Sudarsan I; Hoare K; Sheridan N; Roberts JThere has been a growing interest in giving voice to children in response to the introduction of the United Nations Convention on the Rights of the Child and evolving sociological discourses on childhood. Using child-sensitive methodologies such as constructivist grounded theory (CGT) enables children's voices to contribute authentic, meaningful, and eventually more actionable data, capable of informing policies and practices in children's best interests. In this article, we discuss how researchers using CGT can privilege children's voices through effective knowledge coconstruction by creating a child-sensitive research space and using methods that are appropriate to their abilities and interests. We draw on selected data from the first author's (I. S.) PhD project that explores Indian immigrant children's and their family carers' beliefs, practices, and experiences of asthma in New Zealand. We encourage researchers to consider CGT as one of the appropriate methodological choices to explicitly promote the voice of the child.Item "You've got to look after yourself, to be able to look after them" a qualitative study of the unmet needs of caregivers of community based primary health care patients.(BioMed Central Limited, 12/11/2018) Kuluski K; Peckham A; Gill A; Arneja J; Morton-Chang F; Parsons J; Wong-Cornall C; McKillop A; Upshur REG; Sheridan NBACKGROUND: There is growing reliance on unpaid caregivers to provide support to people with care needs. Integrated care approaches that aim to coordinate primary care with community care known as community based primary health care (CBPHC) has been a key policy initiative across health systems; however most attention has been paid to the needs of patients and not caregivers. The objective of this paper was to explore the unmet needs of caregivers of older adults with complex care needs receiving CBPHC. METHODS: This qualitative descriptive study entailed one-to-one interviews with 80 caregivers from Canada and New Zealand where roles, experiences and needs were explored. Interview text related to unmet need was reviewed inductively and core themes identified. RESULTS: Three themes were identified across CBPHC sites: unrecognized role; lack of personal resources; and no breaks even when services are in place. CONCLUSIONS: To support caregivers, models of care such as CBPHC need to look beyond the patient to meaningfully engage caregivers, address their needs and recognize the insight they hold. This knowledge needs to be valued as a key source of evidence to inform developments in health and social care.