"I don't know whether I will be alive or not" - An interpretative phenomenological analysis of young adult males with Duchenne Muscular Dystrophy making sense of self and life.

BACKGROUND: With ventilatory support, boys with Duchenne Muscular Dystrophy (DMD) now live longer. The emerging adulthood offers unanticipated opportunities for identity exploration. Existing literature has raised issues around transitions and implicit obligations within structural and sociological domains; intrinsic challenges are posed, while concurrently engendering possibilities in an uncertain future. OBJECTIVE: Reveal lived experience and meaning making among men with advanced DMD living outside the western context. METHODS: Secondary data, essentially transcripts of semi-structured interviews with five young men with DMD, age ranging from 23 to 37 years, conducted as part of a larger study were analysed iteratively in depth. Given their underlying vulnerability associated with significant physical dependencies, all respondents were receiving palliative care from the local hospice, and lived with family caregivers at home. RESULTS: Three themes encapsulated the essence of their lifeworld at this juncture. Each shared poignant stories of having survived adverse circumstances in the past, learning to live with themselves in the current state of disabilities and disconnection with peers. Yet, moments of yearning surface, to make new friends and find gainful employment like everyone else. Ambivalence notwithstanding, they navigated societal marginalization through digital media, or found meaning in family bonding and existential dimensions. Faced with uncertainty, most embraced the status quo in silent resignation, to minimise disappointment or as pragmatic responses to enduring systemic and personal barriers. CONCLUSIONS: Study findings expounded challenges men with advanced DMD grappled that ultimately shaped self-identity. Healthcare professionals could support this group of precarious survivors even better through individualised person-centred care.

Utilisation of after-hours telephone support in a home-based hospice service.

BACKGROUND: After-hours support from hospice providers is instrumental to patients with serious illness who choose to remain at home, particularly at end of life. Utilisation of out-of-hours support has been much characterised in terms of frequency and nature of calls, but more needs to be known to inform service customisation and resource allocation to optimise care. To this end, we stratify reasons for using the after-hours helpline according to time sensitivity, and to explore disease and person factors associated with urgent calls. METHOD: Electronic medical records for incoming calls from external parties outside workhours within a large home hospice in Singapore were analysed inductively, to identify patterns and associations along study objectives. Individual code books for caller type and call reasons were created and tested in vivo, and later administered to extracted data. Patients that accessed the helpline were tracked for different outcomes, including hospital admissions and on-call home visits. Logistic regression modelling was performed to categorise call reasons by urgency and to identify disease and person factors associated with time sensitive calls. RESULTS: More than 5,000 calls to the helpline were made over a two-year period (2019-2020), predominantly by family caregivers (88.4%). These were in relation to 2,303 unique patients (38.9% of total patients served). After-hours calls were made an average of 2.3 times by patients across various lengths of service. Only 11.9% of calls were deemed time sensitive or urgent, requiring home visits by on-call staff (4%) or resulting in admission to hospital (7.9%). The majority were managed by primary care teams on the next workday (65.1%) and the remainder sorted during the after-hours call itself (22.3%). Call reasons or presenting issues were classified into two groups according to urgency. Calls in the year 2020, from the younger patient, preferred place of death outside the home, and caller types other than patient or healthcare worker were significantly associated with urgent calls. CONCLUSION: Deeper characterisation of after-hours calls offers possibilities: service redesign for optimal resourcing and customised training for better care. Ultimately, planners, providers, and patients all stand to benefit.

Who needs and continues to need paediatric palliative care? An evaluation of utility and feasibility of the Paediatric Palliative Screening scale (PaPaS).

BACKGROUND: While the populations of children who can benefit from paediatric palliative care (PPC) have been broadly defined, identifying individual patients to receive PPC has been problematic in practice. The Paediatric Palliative Screening scale (PaPaS) is a multi-dimensional tool that assesses palliative care needs in children and families to facilitate timely referrals. This study evaluates its use to manage new referrals and ongoing review of patients receiving home-based PPC in Singapore. METHODS: Using a retrospective cohort study design, 199 patients admitted to receive PPC via clinician screening were scored using PaPaS. Eighty-four patients in two groups were scored again at one of two following milestones: one-year service continuation mark or point of discharge before a year. Accuracy measures were compared against clinical assessment. RESULTS: 96.98% of patients scored 15 and above on admission (indicating need for PPC). Patients assessed at following milestones were effectively stratified; those who continued to receive service after 1 year scored significantly higher (M = 19.23) compared to those who were discharged within a year (M = 7.86). Sensitivity and specificity for PaPaS were calculated at 82.54 and 100% respectively. Overall congruence with clinician-based decisions supports the utility of PaPaS as a screening tool in PPC. Recommendations to improve the scale further are proposed. CONCLUSION: The PaPaS is a practical screening tool that signposts PPC needs within the clinical setting. This facilitates early referrals to PPC, without having to specify individual prognoses that are often uncertain. Other benefits include optimised continuity of care and implications for resource allocation.

Image segmentation of activated sludge phase contrast images using phase stretch transform.

Activated sludge (AS) is a biological treatment process that is employed in wastewater treatment plants. Filamentous bacteria in AS plays an important role in the settling ability of the sludge. Proper settling of the sludge is essential for normal functionality of the wastewater plants, where filamentous bulking is always a persistent problem preventing sludge from settling. The performance of AS plants is conventionally monitored by physico-chemical procedures. An alternative way of monitoring the AS in wastewater treatment process is to use image processing and analysis. Good performance of the image segmentation algorithms is important to quantify flocs and filaments in AS. In this article, an algorithm is proposed to perform segmentation of filaments in the phase contrast images using phase stretch transform. Different values of strength (S) and warp (W) are tested to obtain optimum segmentation results and decrease the halo and shade-off artefacts encountered in phase contrast microscopy. The performance of the algorithm is assessed using DICE coefficient, accuracy, false positive rate (FPR), false negative rate (FNR) and Rand index (RI). Sixty-one gold approximations of ground truth images were manually prepared to assess the segmentation results. Thirty-two of them were acquired at 10× magnification and 29 of them were acquired at 20× magnification. The proposed algorithm exhibits better segmentation performance with an average DICE coefficient equal to 52.25%, accuracy 99.74%, FNR 41.8% and FPR 0.14% and RI 99.49%, based on 61 images.