Aim. To explore patients' and family caregivers' experiences and perceptions of Hospice at Home care. Background. The public indicate a preference to be cared for and to die at home. This has inherent challenges, with a key factor being the family caregiver. Supporting end-of-life care at home has resulted in the expansion of Hospice at Home services. A wide configuration of services exists with a lack of robust evidence as to what is valued by recipients, particularly those who are older people. Design. A prospective descriptive qualitative study. Methods. Recruitment was purposive. Eligible participants were in receipt of Hospice at Home service on at least three occasions and were deemed to have a life expectancy measured in weeks rather than days. Digitally recorded semistructured interviews with 41 participants (16 patients and 25 family caregivers) were undertaken between October 2014 -July 2015. Data were analysed and organized thematically.

The primary sequence of human erythrocyte spectrin contains repetitive homologous sequence motifs of approximately 106 amino acids with 22 such motifs in the ␣-subunit and 17 in the ␤-subunit. These homologous sequence motifs have been proposed to form domains with a triple-helical bundle type structure (Speicher, In this study, we show that these sequence motifs, while they do form compact proteolytically resistant units, are not completely independent. Peptides composed of two or three such motifs in tandem are substantially more stable than peptides composed of a single motif, as measured by proteolysis or by fluorescence or circular dichroism studies of urea or thermal denaturation. Circular dichroism and infrared spectroscopy measurements also indicate that these larger, more stable peptides exhibit greater secondary structure. In these respects, the peptides with tandem sequence motifs are more similar to intact spectrin than the peptide with a single sequence motif. Thus, we conclude that peptides with more than one sequence motif model spectrin more adequately than the peptides with one sequence motif, and that these sequence motifs are not completely independent domains.DHuman erythrocytes contain a dense, two-dimensional network of spectrin and other proteins that provides support to the lipid bilayer and maintains erythrocyte deformability (1). Spectrin, comprising ␣-and ␤-subunits, plays a critical role in maintaining the architecture and therefore the integrity of the red cell membrane. Many hereditary hemolytic anemias involve spectrin mutations (2-4). Thus, it is important to understand the structural properties of spectrin. The bulk (about 90%) of the primary structure of spectrin comprises repetitive homologous units of approximately 106 amino acids in length. Several other proteins, including brain spectrin (fodrin), dystrophin, and ␣-actinin, also have similar repetitive amino acid units in their sequences and are known as the spectrin superfamily (5).A triple-helical bundle model has been suggested for the 106-amino acid sequence motif in which the three helices are aligned side by side, with the first and third parallel and the intervening second helix antiparallel (6 -8). X-ray diffraction studies of one such sequence motif unit from a non-erythroid spectrin support this model (9). In these x-ray studies, the peptide used was found to form a homodimer containing two triple-helical structures, in which two of the three helices are contributed by one monomer and the remaining helix by the other monomer. It is thought that this peculiar arrangement may be an artifact of crystallization, and the true structure of a single unit may be similar to the earlier suggested triplehelical bundle with a zigzag arrangement of the helices (9, 10). This arrangement aligns the amino-and carboxyl-terminal residues at opposite ends of this triple-helical bundle, and thus sequential motifs are thought to be linked in tandem in intact spectrin, producing a very long rod-shaped molecule, approximately 100 nm in l...

What this paper adds: The paper recommends the availability of planned short breaks and appropriate emergency respite care for all young people with life-limiting conditions to prevent carer burnout, deterioration in health and wellbeing, and inappropriate hospital admission. This paper highlights the lack of appropriate short break and emergency respite care provision when children's hospice provision is not available for children's hospice users, and those making the transition from them. This is despite a clear need for this care provision being expressed by families, health and social care professionals and hospice staff. Implications for theory, practice or policy:Policy makers and funding bodies should review access to appropriate short break and emergency care provision from a range of services for young people with life-limiting conditions. Particular attention is needed for the increasing numbers of young people with life-limiting illnesses who are reaching the upper age limit of children's hospice service provision and requiring transition into adult services.

BackgroundGood end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health care professionals, focusing on exploring what their future wishes are; and the development of an advance care plan document. However, in paediatric and neonatal settings, there has been little research to demonstrate how advance care planning conversations take place. This study explored health care professionals’ views and experiences of paediatric advance care planning in hospitals, community settings and hospices.MethodsA qualitative methodology was employed using purposive sampling of health care professionals involved in the end-of-life care for children aged 0–18 years known to the hospital palliative care team, and had died at least three months before, but less than 18 months prior to the study. Ethics committee approval was obtained for the study. Located in the North of England, the study involved three hospitals, a children’s hospice, and community services. Data were collected using semi-structured, digitally recorded, telephone interviews. All interviews were transcribed verbatim and subjected to thematic analysis.ResultsTwenty-one health care professionals participated, including generalist paediatric staff as well as specialist palliative care staff.Two themes were generated from the study: The timing of planning conversations, including waiting for the relationship with the family to form; the introduction of parallel planning; avoiding a crisis situation. Secondly, supporting effective conversations around advance care planning, including where to have the conversation; introducing the conversation; and how to approach the topic encompassing the value of advance care planning and documentation for families.ConclusionThe timing of when to start the advance care planning conversations remains an issue for health care professionals. The value of doing it in stages and considering the environment where the conversations are held was noted. Timely planning was seen as vital to avoid difficult conversations at a crisis point and for co-ordination of care. Good advance care planning is to provide the best person-centred care for the child and experience for the family.

A mixed-mode solid-phase extraction procedure was developed for the isolation and purification of acidic compounds from complex biological matrices. Urine samples were spiked with several acidic drugs and diluted in ammonium acetate buffer. Isolute HAX columns (a mixed-mode phase consisting of both hydrophobic and ion-exchange ligands) were conditioned with methanol and ammonium acetate prior to sample loading. Once the samples were loaded, the cartridges were rinsed sequentially with ammonium acetate and a 50:50 ratio of methanol and deionized water. The analytes were eluted with an 80:20 ratio of methanol and acetic acid. The eluates were evaporated to dryness and reconstituted to a final volume with a 98:2:0.1 ratio of deionized water, acetonitrile, and trifluoroacetic acid. Samples were analyzed by high-performance liquid chromatography. The absolute recoveries for most of the tested acidic drugs exceeded 80% at an original concentration of 1 microg/mL. Hydrophobic and ion-exchange sorbents were also investigated separately; however, the retention of the analytes suffered during sample application as well as the purity of the eluted extract. Results on anion-exchange columns show that the correct choice of counter-ion is extremely important to the retention of acidic analytes. The highest absolute recoveries were obtained when acetate was the counter-anion on the ion-exchange sorbent.

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Examples of good collaborative working were reported. With an increasing population of young adults and pressure on families, it is vital that services work together to find sustainable solutions to the challenges.

Children who are dependent upon technology are resource-intensive (Breneol et al., 2019), a high-cost subpopulation of seriously ill babies, children and young people with life-limiting conditions (de