Nursing
Permanent URI for this collectionhttps://eresearch.qmu.ac.uk/handle/20.500.12289/24
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Item German translation, cultural adaptation and validation of the Person-Centred Practice Inventory—Staff (PCPI-S)(BioMed Central, 2023-05-09) von Dach, Christoph; Schlup, Nanja; Gschwenter, Stefan; McCormack, BrendanBackground: The person-centred practice framework represents the cornerstone of a middle-range theory. Internationally, person-centredness has become an increasingly common topic. The measurement of the existence of a person-centred culture is complex and subtle. The Person-Centred Practice Inventory—Staff (PCPI-S) measures clinicians’ experience of a person-centred culture in their practice. The PCPI-S was developed in English. Therefore, the aims of this study were (1) to translate the PCPI-S into German and to cross-culturally adapt and test in the acute care setting (PCPI-S aG Swiss) and (2) to investigate the psychometric properties of the PCPI-S aG Swiss. Methods: The two-phase investigation of this cross-sectional observational study followed the guidelines and principles of good practice for the process of translation and cross-cultural adaptation of self-reporting measures. Phase 1 involved an eight-step translation and cultural adaptation of the PCPI-S testing in an acute care setting. In Phase 2, psychometric retesting and statistical analysis based on a quantitative cross-sectional survey were undertaken. To evaluate the construct validity, a confirmatory factor analysis was implemented. Cronbach’s alpha was used to determine the internal consistency. Results: A sample of 711 nurses working in a Swiss acute care setting participated in testing the PCPI-S aG Swiss. Confirmatory factor analysis indicated a good overall model fit, validating the strong theoretical framework, which underpins the PCPI-S aG Swiss. Cronbach’s alpha scores demonstrated excellent internal consistency. Conclusion: The chosen procedure ensured cultural adaptation to the German-speaking part of Switzerland. The psychometric results were good to excellent and comparable with other translations of the instrument.Item Stakeholder’s experiences of living and caring in technology-rich supported living environments for tenants living with dementia(BioMed Central, 2023-02-01) Daly-Lynn, Jean; Ryan, Assumpta; McCormack, Brendan; Martin, SuzanneBackground: Technology innovation provides an opportunity to support the rising number of people living with dementia globally. The present study examines experiences of people who have dementia and live in technology enriched supported care models. Additionally, it explores caregiver’s attitudes towards technology use with the housing scheme. Methods: A qualitative research design was adopted, and eight housing schemes consented to take part in the study. A technology audit was undertaken in addition to participant interviews and caregiver survey. Seven peer researchers conducted semi-structured interviews with 22 people living with dementia. Interviews were analysed using thematic analysis. Informal and formal caregivers were invited to complete a survey to capture their attitudes towards technology use. A total of 20 informal and 31 formal caregiver surveys were returned. All surveys were input into Survey Monkey and downloaded into excel for analysis. Closed questions were analysed using descriptive statistics and open-ended questions were organised into themes and described descriptively. Results: The technology audit identified that technologies were in place from as early as 2002. Technology heterogeneity of, both passive and active devices, was found within the housing schemes. Technologies such as wearable devices were reportedly used according to need, and mobile phone use was widely adopted. The themes that developed out of the tenant interviews were: Attitudes and Engagement with Technology; Technology Enhancing Tenants Sense of Security; Seeking Support and Digital Literacy; and Technology Enabled Connection. A lack of awareness about living alongside technology was a major finding. Technologies enabled a sense of reassurance and facilitated connections with the wider community. The interaction with technology presented challenges, for example, remembering passwords, access to Wi-Fi and the identification of its use in an emergency. The caregiver survey reported a range of facilitators and barriers for the use of technology within care. Both types of caregivers held relatively similar views around the benefits of technology, however their views on issues such as privacy and consent varied. Safety was considered more important than right to privacy by family caregivers. Conclusions: The present study provides new insight into stakeholder’s experiences of living, working and caregiving alongside technology in supported living environments. As the generation of people living with dementia become more tech savvy, harnessing everyday technologies to support care could enable holistic care and support the transition through the care continuum. Advance care planning and technology assessments are at the very core of future technology provision. It is evident that a paternalistic attitudes towards technology use could impact the multitude of benefits technology can play in both health and leisure for people living with dementia and their caregivers.Item WeWalk: walking with a buddy after stroke—a pilot study evaluating feasibility and acceptability of a person-centred dyadic behaviour change intervention(BioMed Central, 2023-01-13) Morris, Jacqui H.; Irvine, Linda; Tooman, Tricia; Dombrowski, Stephan U.; McCormack, Brendan; Van Wijck, Frederike; Lawrence, MaggieBackground: Evidence for benefits of physical activity after stroke is unequivocal. However, many people with stroke are inactive, spending > 80% of waking hours sedentary even when they have physical capacity for activity, indicating barriers to physical activity participation that are not physical. WeWalk is a 12-week person-centred dyadic behaviour change intervention in which a person with stroke (PWS) and a walking buddy form a dyad to work together to support the PWS to increase their physical activity by walking outdoors. This pilot study examined the feasibility of recruiting dyads, explored their perceptions of acceptability and their experiences using WeWalk, to identify required refinements before progression to a clinical trial. Methods: Design: A single-arm observational pilot study with qualitative evaluation. Intervention: WeWalk involved facilitated face-to-face and telephone sessions with a researcher who was also a behaviour change practitioner, supported by intervention handbooks and diaries, in which dyads agreed walking goals and plans, monitored progress, and developed strategies for maintaining walking. Evaluation: Descriptive data on recruitment and retention were collected. Interview data were collected through semi-structured interviews and analysed using thematic analysis, guided by a theoretical framework of acceptability. Results: We recruited 21 dyads comprising community dwelling PWS and their walking buddies. Ten dyads fully completed WeWalk before government-imposed COVID-19 lockdown. Despite lockdown, 18 dyads completed exit interviews. We identified three themes: acceptability evolves with experience, mutuality, and person-centredness with personally relevant tailoring. As dyads recognised how WeWalk components supported walking, perceptions of acceptability grew. Effort receded as goals and enjoyment of walking together were realised. The dyadic structure provided accountability, and participants’ confidence developed as they experienced physical and psychological benefits of walking. WeWalk worked best when dyads exhibited relational connectivity and mutuality in setting and achieving goals. Tailoring intervention components to individual circumstances and values supported dyads in participation and achieving meaningful goals. Conclusion: Recruiting dyads was feasible and most engaged with WeWalk. Participants viewed the dyadic structure and intervention components as acceptable for promoting outdoor walking and valued the personally tailored nature of WeWalk. Developing buddy support skills and community delivery pathways are required refinements. ISCTRN number: 34488928.Item A clinicopathological study of selected cognitive impairment cases in Lothian, Scotland: enhanced CJD surveillance in the 65 + population group(BioMed Central, 2022-07-20) Kanguru, Lovney; Logan, Gemma; Waddel, Briony; Smith, Colin; Molesworth, Anna; Knight, RichardAbstract: Background: Variant Creutzfeldt-Jakob Disease (vCJD) is primarily associated with dietary exposure to bovine-spongiform-encephalopathy. Cases may be missed in the elderly population where dementia is common with less frequent referral to specialist neurological services. This study’s twin aims were to determine the feasibility of a method to detect possible missed cases in the elderly population and to identify any such cases. Methods: A multi-site study was set-up in Lothian in 2016, to determine the feasibility of enhanced CJD-surveillance in the 65 + population-group, and undertake a clinicopathological investigation of patients with features of ‘atypical’ dementia. Results: Thirty patients are included; 63% male, 37% female. They were referred because of at least one neurological feature regarded as ‘atypical’ (for the common dementing illnesses): cerebellar ataxia, rapid progression, or somato-sensory features. Mean-age at symptom-onset (66 years, range 53–82 years), the time between onset-of-symptoms and referral to the study (7 years, range 1–13 years), and duration-of-illness from onset-of-symptoms until death or the censor-date (9.5 years, range 1.1–17.4 years) were determined. By the censor-date, 9 cases were alive and 21 had died. Neuropathological investigations were performed on 10 cases, confirming: Alzheimer’s disease only (2 cases), mixed Alzheimer’s disease with Lewy bodies (2 cases), mixed Alzheimer’s disease with amyloid angiopathy (1 case), moderate non-amyloid small vessel angiopathy (1 case), a non-specific neurodegenerative disorder (1 case), Parkinson's disease with Lewy body dementia (1 case), and Lewy body dementia (2 cases). No prion disease cases of any type were detected. Conclusion: The surveillance approach used was well received by the local clinicians and patients, though there were challenges in recruiting sufficient cases; far fewer than expected were identified, referred, and recruited. Further research is required to determine how such difficulties might be overcome. No missed cases of vCJD were found. However, there remains uncertainty whether this is because missed cases are very uncommon or because the study had insufficient power to detect them.Item An analysis of the construct validity and responsiveness of the ICECAP-SCM capability wellbeing measure in a palliative care hospice setting(BioMed Central, 2022-07-08) Myring, Gareth; Mitchell, Paul Mark; Kernohan, W. George; McIlfatrick, Sonja; Cudmore, Sarah; Finucane, Anne M.; Graham-Wisener, Lisa; Hewison, Alistair; Jones, Louise; Jordan, Joanne; McKibben, Laurie; Muldrew, Deborah H. L.; Zafar, Shazia; Coast, JoannaAbstract: Background: For outcome measures to be useful in health and care decision-making, they need to have certain psychometric properties. The ICECAP-Supportive Care Measure (ICECAP-SCM), a seven attribute measure (1. Choice, 2. Love and affection, 3. Physical suffering, 4. Emotional suffering, 5. Dignity, 6. Being supported, 7. Preparation) developed for use in economic evaluation of end-of-life interventions, has face validity and is feasible to use. This study aimed to assess the construct validity and responsiveness of the ICECAP-SCM in hospice inpatient and outpatient settings. Methods: A secondary analysis of data collated from two studies, one focusing on palliative care day services and the other on constipation management, undertaken in the same national hospice organisation across three UK hospices, was conducted. Other quality of life and wellbeing outcome measures used were the EQ-5D-5L, McGill Quality of Life Questionnaire – Expanded (MQOL-E), Patient Health Questionnaire-2 (PHQ-2) and Palliative Outcomes Scale Symptom list (POS-S). The construct validity of the ICECAP-SCM was assessed, following hypotheses generation, by calculating correlations between: (i) its domains and the domains of other outcome measures, (ii) its summary score and the other measures’ domains, (iii) its summary score and the summary scores of the other measures. The responsiveness of the ICECAP-SCM was assessed using anchor-based methods to understand change over time. Statistical analysis consisted of Spearman and Pearson correlations for construct validity and paired t-tests for the responsiveness analysis. Results: Sixty-eight participants were included in the baseline analysis. Five strong correlations were found with ICECAP-SCM attributes and items on the other measures: four with the Emotional suffering attribute (Anxiety/depression on EQ-5D-5L, Psychological and Burden on MQOL-E and Feeling down, depressed or hopeless on PHQ-2), and one with Physical suffering (Weakness or lack of energy on POS-S). ICECAP-SCM attributes and scores were most strongly associated with the MQOL-E measure (0.73 correlation coefficient between summary scores). The responsiveness analysis (n = 36) showed the ICECAP-SCM score was responsive to change when anchored to changes on the MQOL-E over time (p < 0.05). Conclusions: This study provides initial evidence of construct validity and responsiveness of the ICECAP-SCM in hospice settings and suggests its potential for use in end-of-life care research.Item How to implement person-centred care and support for dementia in outpatient and home/community settings: Scoping review(BMC, 2022-04-22) Marulappa, Nidhi; Anderson, Natalie N.; Bethell, Jennifer; Bourbonnais, Anne; Kelly, Fiona; McMurray, Josephine; Rogers, Heather L.; Vedel, Isabelle; Gagliardi, Anna R.Background: Little prior research focused on person-centred care and support (PCCS) for dementia in home, community or outpatient care. We aimed to describe what constitutes PCCS, how to implement it, and considerations for women who comprise the majority of affected persons (with dementia, carers). Methods: We conducted a scoping review by searching multiple databases from 2000 inclusive to June 7, 2020. We extracted data on study characteristics and PCCS approaches, evaluation, determinants or the impact of strategies to implement PCCS. We used summary statistics to report data and interpreted findings with an existing person-centred care framework. Results: We included 22 studies with qualitative (55%) or quantitative/multiple methods design (45%) involving affected persons (50%), or healthcare workers (50%). Studies varied in how PCCS was conceptualized; 59% cited a PCC definition or framework. Affected persons and healthcare workers largely agreed on what constitutes PCCS (e.g. foster partnership, promote autonomy, support carers). In 4 studies that evaluated care, barriers of PCCS were reported at the affected person (e.g. family conflict), healthcare worker (e.g. lack of knowledge) and organizational (e.g. resource constraints) levels. Studies that evaluated strategies to implement PCCS approaches were largely targeted to healthcare workers, and showed that in-person inter-professional educational meetings yielded both perceived (e.g. improved engagement of affected persons) and observed (e.g. use of PCCS approaches) beneficial outcomes. Few studies reported results by gender or other intersectional factors, and none revealed if or how to tailor PCCS for women. This synthesis confirmed and elaborated the PCC framework, resulting in a Framework of PCCS for Dementia. Conclusion: Despite the paucity of research on PCCS for dementia, synthesis of knowledge from diverse studies into a Framework provides interim guidance for those planning or evaluating dementia services in outpatient, home or community settings. Further research is needed to elaborate the Framework, evaluate PCCS for dementia, explore determinants, and develop strategies to implement and scale-up PCCS approaches. Such studies should explore how to tailor PCCS needs and preferences based on input from persons with dementia, and by sex/gender and other intersectional factors such as ethnicity or culture.