• Participatory Video and Situated Ethics: Avoiding Disablism

      Capstick, Andrea (2012)
      This chapter considers the adaptations which may need to be made to participatory video in order for it to be accessible to people whose marginalized status stems from a label of 'disability', whether this is physical, sensory or cognitive. To date there has been an ill fit between the emancipatory principles of participatory video, and the technical rationality (Schön, 1996) and hypercognitivity (Post, 2000) of its methods. Because participatory video is intended to enable marginalized, socially excluded and unheard groups of people to make films which reflect their own interests and concerns (Robertson & Shaw, 1997), adaptations to allow people with disabilities to take part would appear vital from an ethical point of view. Yet ethical issues in general do not appear to have been given sufficient consideration in the participatory video literature to date, and there is little evidence of engagement with emergent areas of debate such as the ethics of visual research (Prosser, 2008) and the importance of working in solidarity with people with reduced or fluctuating mental capacity (Nuffield Council for Bioethics, 2009).
    • Participatory video and well-being in long-term care

      Capstick, Andrea; Ludwin, Katherine; Chatwin, John; Walters, Elizabeth R. (2016-01)
      Film-making is an effective way of engaging people with dementia and improving their well-being. Andrea Capstick and colleagues explain how ‘participatory video’ gave one group an opportunity to tell their own story in film.
    • Partnership is alive and underpinning healthcare delivery

      McIntosh, Bryan (2015-12-14)
      Bryan McIntosh, senior lecturer in health management and organisational behaviour at the University of Bradford, explores the role of partnerships in the health service.
    • Pathophysiology and pharmacology for nursing students

      Ashelford, Sarah L.; Raynsford, Justine; Taylor, Vanessa (2016)
    • Patient and other factors influencing the prescribing of cardiovascular prevention therapy in the general practice setting with and without nurse assessment

      Mohammed, Mohammed A.; El Sayed, C.; Marshall, T. (2012)
      BACKGROUND: Although guidelines indicate when patients are eligible for antihypertensives and statins, little is known about whether general practitioners (GPs) follow this guidance. OBJECTIVE: To determine the factors influencing GPs decisions to prescribe cardiovascular prevention drugs. DESIGN OF STUDY: Secondary analysis of data collected on patients whose cardiovascular risk factors were measured as part of a controlled study comparing nurse-led risk assessment (four practices) with GP-led risk assessment (two practices). SETTING: Six general practices in the West Midlands, England. PATIENTS: Five hundred patients: 297 assessed by the project nurse, 203 assessed by their GP. MEASUREMENTS: Cardiovascular risk factor data and whether statins or antihypertensives were prescribed. Multivariable logistic regression models investigated the relationship between prescription of preventive treatments and cardiovascular risk factors. RESULTS: Among patients assessed by their GP, statin prescribing was significantly associated only with a total cholesterol concentration >/= 7 mmol/L and antihypertensive prescribing only with blood pressure >/= 160/100 mm Hg. Patients prescribed an antihypertensive by their GP were five times more likely to be prescribed a statin. Among patients assessed by the project nurse, statin prescribing was significantly associated with age, sex, and all major cardiovascular risk factors. Antihypertensive prescribing was associated with blood pressures >/= 140/90 mm Hg and with 10-year cardiovascular risk. LIMITATIONS: Generalizability is limited, as this is a small analysis in the context of a specific cardiovascular prevention program. CONCLUSIONS: GP prescribing of preventive treatments appears to be largely determined by elevation of a single risk factor. When patients were assessed by the project nurse, prescribing was much more consistent with established guidelines.
    • Patient Centred Care & Considerations

      Hyde, E.; Hardy, Maryann L. (CRC Press, 2020-07-16)
    • Patient centred care in diagnostic radiography (Part 1): Perceptions of service users and service deliverers

      Hyde, E.; Hardy, Maryann L. (2021-02)
      Introduction There is growing awareness of the importance of patient centered care (PCC) in health care. Within Radiography in the UK, elements of PCC are embedded within professional body publications and guidance documents. However, there is limited research evidence exploring whether perceptions of PCC are equivalent between those delivering (radiographers) and those experiencing (patient) care. This study aimed to address this gap by determining compatibility in perceptions of PCC between those using and those delivering radiography services. This is the first step in developing measurable indicators of PCC in diagnostic radiography. Methods A multi-method two stage approach was undertaken using survey and interview data collection techniques. Ethical approval was granted by University of Derby College of Health & Social Care Ethics committee. This paper reports Stage 1 of the study, the online, cross sectional survey. Participants were asked to indicate their level of agreement to a series of attitudinal statements using a 5-point Likert scale. Statements were paired, but not co-located to increase validity. Participants were invited to provide free text comments to supplement their responses. Stage 2 of the project is reported separately. Results Survey responses were received from all 3 participant subgroups. A minimum response rate of 30 participants per sub-group was set as a target. Response rates varied across subgroups, with only radiography managers failing to meet the expected response threshold. Wide disparity between perceptions of service users and those delivering radiography services on what constitutes high quality PCC was evident. Conclusion It is evident that there is still work required to ensure parity between expectations of service users and deliverers on what constitutes high quality PCC. Implications for practice Further work is required to identify measurable service delivery outcomes that represent PCC within radiographic practice.
    • Patient centred care in diagnostic radiography (Part 2): A qualitative study of the perceptions of service users and service deliverers

      Hyde, E.; Hardy, Maryann L. (2020-10)
      Introduction There is growing awareness of the importance of patient centred care (PCC) in health care. Within Radiography in the UK, elements of PCC are embedded within professional body publications and guidance documents, but there is limited research evidence exploring whether perceptions of PCC are equivalent between those delivering (radiographers) and those experiencing (patient) care. This study aimed to address this gap by determining compatibility in perceptions of PCC between those using and those delivering radiography services in order to develop measurable indicators of PCC. Methods This project was funded by the College of Radiographers Industry Partnership Scheme. Ethical approval was granted by the University of Derby College of Health & Social Care Ethics committee. This paper reports Stage 2 of the project, which was a series of focus groups and telephone interviews to enable deeper discussion and exploration of PCC. Situational vignettes were used to promote discussion and debate and encourage suggestions for PCC approaches. Audit tools to assess engagement with PCC were developed at individual and organisational level. Results Four focus groups and six telephone interviews were carried out in total. Focus groups were held in a variety of locations to promote attendance. Telephone interviews were used to capture participants who could not attend a focus group in person. Disparity between perceptions of service users and those delivering radiography services on what constitutes high quality PCC was evident. Perceived levels of care and the effectiveness of communication appeared to be the key influences on whether PCC was delivered. Conclusion It is evident from the results of Stage 1 and Stage 2 that we have some way to go before we have parity in how care within diagnostic radiography is perceived, experienced and delivered. Audit tools and an educational toolkit are offered as ways to support increased PCC within diagnostic radiography practice. Implications for practice Several service improvements and audit tools are offered to support the increased delivery of PCC.
    • Patient centred care in diagnostic radiography (Part 3): Perceptions of student radiographers and radiography academics

      Hyde, E.; Hardy, Maryann L. (2021-01)
      Introduction: Awareness is growing of the importance of patient centered care (PCC) in diagnostic radiography. PCC is embedded within professional body publications and guidance documents, but there is limited research evidence exploring the perceptions of student radiographers and radiography academics. Methods: This paper reports Stage 1 and Stage 2 of the project from the perspective of radiography academic and student radiographer participants, and compares these to the perspectives of service users, clinical radiographers and radiography managers reported previously. Stage 1 used an online survey tool to gauge participant agreement with a series of attitudinal statements. Stage 2 used situational vignettes to promote discussion and debate about PCC approaches. Results: Response rates to the Stage 1 survey were above the minimum threshold, with 50 responses from student radiographers and 38 responses from radiography academics. Stage 1 participants were asked to participate in Stage 2 on a voluntary basis. As with service users and service deliverers, care communication, event interactions and control over environment were the key influences on PCC. However, students highlighted differences between reported and observed levels of PCC. Conclusion: There is some way to go to embed PCC in diagnostic radiography practice. As impartial observers of radiography practice, student radiographers highlight the difference between service users and service deliverer's perceptions of PCC. Whilst the focus of clinical radiographers remains on efficiency, it is difficult for student radiographers to challenge the accepted norm. Role models are required to promote PCC behaviours and a holistic approach in radiography practice. Implications for practice: A package of educational support and audit tools will be made available to support both service deliverers and student radiographers to deliver PCC
    • The patient experience of community hospital - the process of care as a determinant of satisfaction.

      Small, Neil A.; Green, J.R.; Spink, Joanna; Forster, A.; Lowson, K.; Young, J. (Blackwell Publishing, 2006)
      Aims and objectives; We report findings from a qualitative study to identify patient views of community hospital care. We consider how far these were in accord with the hospital staffs' views. This constituted part of a wider randomized controlled trial (RCT). The methodological challenges in seeking to identify patient satisfaction and in linking qualitative findings with trial results are explored. Design A sample of 13 patients randomized to the community hospital arm of the RCT joined the qualitative study. Official documentation from the hospital were accessed and six staff interviewed to identify assumptions underlying practice. Results Analysis of interviews identified a complex picture concerning expectations These could be classified as ideal, realistic, normative and unformed. The hospital philosophy and staff views about service delivery were closely in harmony, they delivered rehabilitation in a home-based atmosphere. The formal, or 'hard', process of rehabilitation was not well understood by patients. They were primarily concerned with 'soft' or process issues ¿ where and how care was delivered. Conclusions We identify a model of community hospital care that incorporates technical aspects of rehabilitation within a human approach that is welcomed by patients. If patients are to be able to participate in making informed decisions about care, the rationale for the activities of staff need to be more clearly explained. Recommendations are made about the appropriate scope of qualitative findings in the context of trials and about techniques to access patient views in areas where they have difficulty in expressing critical impressions.
    • Patient involvement in patient safety: Protocol for developing an intervention using patient reports of organisational safety and patient incident reporting

      Ward, J.K.; McEachan, Rosemary; Lawton, R.; Armitage, Gerry R.; Watt, I.S.; Wright, J.; Yorkshire Quality Safety Research Group (2011)
      BACKGROUND: Patients have the potential to provide a rich source of information on both organisational aspects of safety and patient safety incidents. This project aims to develop two patient safety interventions to promote organisational learning about safety - a patient measure of organisational safety (PMOS), and a patient incident reporting tool (PIRT) - to help the NHS prevent patient safety incidents by learning more about when and why they occur. METHODS: To develop the PMOS 1) literature will be reviewed to identify similar measures and key contributory factors to error; 2) four patient focus groups will ascertain practicality and feasibility; 3) 25 patient interviews will elicit approximately 60 items across 10 domains; 4) 10 patient and clinician interviews will test acceptability and understanding. Qualitative data will be analysed using thematic content analysis.To develop the PIRT 1) individual and then combined patient and clinician focus groups will provide guidance for the development of three potential reporting tools; 2) nine wards across three hospital directorates will pilot each of the tools for three months. The best performing tool will be identified from the frequency, volume and quality of reports. The validity of both measures will be tested. 300 patients will be asked to complete the PMOS and PIRT during their stay in hospital. A sub-sample (N = 50) will complete the PMOS again one week later. Health professionals in participating wards will also be asked to complete the AHRQ safety culture questionnaire. Case notes for all patients will be reviewed. The psychometric properties of the PMOS will be assessed and a final valid and reliable version developed. Concurrent validity for the PIRT will be assessed by comparing reported incidents with those identified from case note review and the existing staff reporting scheme. In a subsequent study these tools will be used to provide information to wards/units about their priorities for patient safety. A patient panel will provide steering to the research. DISCUSSION: The PMOS and PIRT aim to provide a reliable means of eliciting patient views about patient safety. Both interventions are likely to have relevance and practical utility for all NHS hospital trusts.
    • Patient safety culture in maternity units: a review

      Al Nadabi, W.; McIntosh, Bryan; McClelland, Gabrielle T.; Mohammed, Mohammed A. (2018)
      Purpose: To summarize studies that have examined patient safety culture (PSC) in maternity units and describe the different purposes, study designs and tools reported in these studies, whilst highlighting gaps in the literature. Methodology: Peer-reviewed studies published in English during 1961-2016 across eight electronic databases were subjected to a narrative literature review. Findings: Among 100 articles considered, 28 met the inclusion criteria. The main purposes for studying PSC were: (a) assessing intervention effects on PSC (n= 17); and (b) assessing PSC level (n=7). Patient safety culture was mostly assessed quantitatively using validated questionnaires (n=23). The Safety Attitude Questionnaire was the most commonly used questionnaire (n=17). Intervention varied from a single action lasting five weeks to a more comprehensive package lasting more than four years. The time between the baseline and the follow-up assessment varied from six months up to 24 months. No study reported measurement or intervention costs, and none incorporated the patient’s voice in assessing PSC. Practical Implications: Assessing PSC in maternity units is feasible using validated questionnaires. Interventions to enhance PSC have not been rigorously evaluated. Future studies should report PSC measurement costs, adopt more rigorous evaluation designs, and find ways to incorporate the patient’s voice. Originality/Value: This review summarized studies examining PSC in a highly important area and highlighted main limitations that future studies should consider.
    • Patient safety culture in Oman: A national study

      Al Nadabi, Waleed; Faisal, Muhammad; Mohammed, Mohammed A. (2020-10)
      Rational, aim, and objectives: A positive patient safety culture in maternity units is linked to higher quality of care and better outcomes for mothers. However, safety culture varies across maternity units. Analyses of variation in safety culture using statistical process control (SPC) methods may help provider units to learn from each other's performance. This study aims to measure patient safety culture across maternity units in Oman using SPC methods. Methods: The 36-item Safety Attitude Questionnaire (SAQ) was distributed to all doctors, nurses, and midwifes working in ten maternity care units in Oman's hospitals and analysed using SPC methods. The SAQ considers six domains: job satisfaction, perception of management, safety climate, stress recognition, teamwork, and work condition. Results: Of the 892 targeted participants, 735 (82%) questionnaires were returned. The overall percentage of positive safety responses in all hospitals ranged from 53% to 66%, but no hospital had the targeted response of above 75%. Job satisfaction had the highest safety score (4.10) while stress recognition was the lowest (3.17). SPC charts showed that the overall percentage of positive responses in three maternity units (H1, H7, and H10) was above and one (H4) was below the control limits that represent special cause variation that merits further investigation. Conclusion: Generally, the safety culture in maternity units in Oman is below target and suggests that considerable work is required to enhance safety culture. Several maternity units showed evidence of high/low special cause variation that may offer a useful starting point for understanding and enhancing safety culture.
    • Patient safety, satisfaction, and quality of hospital care: cross sectional surveys of nurses and patients in 12 countries in Europe and the United States

      Aiken, L.H.; Sermeus, W.; Van den Heede, K.; Sloane, D.M.; Busse, R.; McKee, M.; Rafferty, A.M.; Griffiths, P.; Moreno-Casbas, M.T.; Tishelman, C.; et al. (2012-03-20)
      Objective To determine whether hospitals with a good organisation of care (such as improved nurse staffing and work environments) can affect patient care and nurse workforce stability in European countries. Design Cross sectional surveys of patients and nurses. Setting Nurses were surveyed in general acute care hospitals (488 in 12 European countries; 617 in the United States); patients were surveyed in 210 European hospitals and 430 US hospitals. Participants 33 659 nurses and 11 318 patients in Europe; 27 509 nurses and more than 120 000 patients in the US. Main outcome measures Nurse outcomes (hospital staffing, work environments, burnout, dissatisfaction, intention to leave job in the next year, patient safety, quality of care), patient outcomes (satisfaction overall and with nursing care, willingness to recommend hospitals). Results The percentage of nurses reporting poor or fair quality of patient care varied substantially by country (from 11% (Ireland) to 47% (Greece)), as did rates for nurses who gave their hospital a poor or failing safety grade (4% (Switzerland) to 18% (Poland)). We found high rates of nurse burnout (10% (Netherlands) to 78% (Greece)), job dissatisfaction (11% (Netherlands) to 56% (Greece)), and intention to leave (14% (US) to 49% (Finland, Greece)). Patients’ high ratings of their hospitals also varied considerably (35% (Spain) to 61% (Finland, Ireland)), as did rates of patients willing to recommend their hospital (53% (Greece) to 78% (Switzerland)). Improved work environments and reduced ratios of patients to nurses were associated with increased care quality and patient satisfaction. In European hospitals, after adjusting for hospital and nurse characteristics, nurses with better work environments were half as likely to report poor or fair care quality (adjusted odds ratio 0.56, 95% confidence interval 0.51 to 0.61) and give their hospitals poor or failing grades on patient safety (0.50, 0.44 to 0.56). Each additional patient per nurse increased the odds of nurses reporting poor or fair quality care (1.11, 1.07 to 1.15) and poor or failing safety grades (1.10, 1.05 to 1.16). Patients in hospitals with better work environments were more likely to rate their hospital highly (1.16, 1.03 to 1.32) and recommend their hospitals (1.20, 1.05 to 1.37), whereas those with higher ratios of patients to nurses were less likely to rate them highly (0.94, 0.91 to 0.97) or recommend them (0.95, 0.91 to 0.98). Results were similar in the US. Nurses and patients agreed on which hospitals provided good care and could be recommended. Conclusions Deficits in hospital care quality were common in all countries. Improvement of hospital work environments might be a relatively low cost strategy to improve safety and quality in hospital care and to increase patient satisfaction.
    • Patient-directed therapy during in-patient stroke rehabilitation: stroke survivors' views of feasibility and acceptability

      Horne, Maria; Thomas, N.; McCabe, C.; Selles, R.; Vail, A.; Tyrrell, P.J.; Tyson, S. (2015)
      Patient-led therapy, in which patients work outside therapy sessions without direct supervision, is a possible way to increase the amount of therapy stroke patients' receive without increasing staff demands. Here, we report patients' views of patient-led mirror therapy and lower limb exercises. 94 stroke survivors with upper and lower limb limitations at least 1-week post-stroke undertook 4 weeks of daily patient-led mirror therapy or lower limb exercise, then completed questionnaires regarding their experience and satisfaction. A convenience random sample of 20 participants also completed a semi-structured telephone interview to consider their experience in more detail and to capture their longer term impressions. Participants were generally positive about patient-led therapy. About 71% found it useful; 68% enjoyed it; 59% felt it "worked" and 88% would recommend it to other patients. Exercise was viewed more positively than the mirror therapy. Difficulties included arranging the equipment and their position, particularly for more severe strokes, loss of motivation and concerns about working unsupervised. Patient-led mirror therapy and lower limb exercises during in-patient rehabilitation is generally feasible and acceptable to patients but "light touch" supervision to deal with any problems, and strategies to maintain focus and motivation are needed. Implications for Rehabilitation Most stroke patients receive insufficient therapy to maximize recovery during rehabilitation. As increases in staffing are unlikely there is an imperative to find ways for patients to increase the amount of exercise and practice of functional tasks they undertake without increasing demands on staff. Patient-led therapy (also known as patient-directed therapy or independent practice), in which patients undertake exercises or functional tasks practice prescribed by a professional outside formal therapy sessions is one way of achieving this. It is widely used in community-based rehabilitation but is uncommon in hospital-based stroke care. We explored the feasibility and acceptability of two types of patient-led therapy during hospital-based stroke care; mirror therapy for the upper limb and exercises (without a mirror) for the lower limb. Here, we report patients' experiences of undertaking patient-led therapy. Patient-led mirror therapy and lower limb exercises during in-patient stroke rehabilitation is generally feasible and acceptable to patients but "light touch" supervision to deal with any problems, and strategies to maintain focus and motivation are needed.
    • Patients as qualitative data analysts: Developing a method for a process evaluation of the ‘Improving the Safety and Continuity of Medicines management at care Transitions’ (ISCOMAT) cluster randomised control trial

      Powell, Catherine; Ismail, Hanif; Cleverley, R.; Taylor, A.; Breen, Liz; Fylan, Beth; Alderson, S.L.; Alldred, David P. (2021-08)
      Background: How to meaningfully partner with patients as data analysts remains obscure. A process evaluation of the ‘Improving the Safety and Continuity Of Medicines management at care Transitions’ (ISCOMAT) cluster randomised control trial of an intervention for improving medicines use for people living with heart failure is being conducted. The intervention includes patient held information on heart medicines and care, enhanced communication between hospital and community pharmacists, and increased engagement of community pharmacists with patient care post-hospital discharge. ISCOMAT patients living with heart failure were interviewed about experiences with the intervention. We sought to gain insights from patients on data collected to enhance our understanding of experiences with the intervention. Objective: To develop a method for involving patients as analysts of qualitative data in a process evaluation. Design: Patients and researchers co-analysed qualitative data. A framework method was applied involving; familiarisation, coding, developing an analytical framework and interpretation. The process was facilitated through home working and a workshop with a training component. Results: The co-designed framework enabled researchers to map all further patient interview data. Patients' specialist knowledge enhanced understanding of how the ISCOMAT intervention can be best implemented. Conclusions: Patients’ unique experiences can enhance validity and rigour in data analysis through sharing their interpretations of qualitative data. The involvement process is crucial in elucidating knowledge and avoiding tokenism. As analysts, patients gain an appreciation of research processes, building trust between researchers and patients. Group dynamics and involving patients throughout the whole research process are important considerations.
    • Patients as Reviewers of Quality and Safety.

      Armitage, Gerry R.; Ward, J.K.; Birks, Y. (2013)
    • Patients treated for hyperthyroidism are at increased risk of becoming obese: findings from a large prospective secondary care cohort

      Torlinska, B.; Nichols, L.; Mohammed, Mohammed A.; McCabe, C.; Boelaert, K. (2019-10-15)
      Background: The most commonly reported symptom of hyperthyroidism is weight loss; successful treatment increases weight. Weight gain faced by patients with hyperthyroidism is widely considered a simple reaccumulation of premorbid weight, whereas many patients feel there is a significant weight “overshoot” attributable to the treatment. We aimed to establish if weight gain seen following treatment for hyperthyroidism represents replenishment of premorbid weight or “overshoot” beyond expected regain and, if there is excessive weight gain, whether this is associated with the applied treatment modality. Methods: We calculated the risk of becoming obese (body mass index [BMI] >30 kg/m2) following treatment for hyperthyroidism by comparing BMI of 1373 patients with overt hyperthyroidism seen in a secondary care setting with the age- and sex-matched background population (Health Survey for England, 2007–2009). Next, we investigated the effect of treatment with an antithyroid drug (ATD) alone in regard to ATD with radioactive iodine (131I) therapy. We modeled the longitudinal weight data in relation to the treatment pathway to thyroid function and the need for long-term thyroxine replacement. Results: During treatment of hyperthyroidism, men gained 8.0 kg (standard deviation ±7.5) and women 5.5 kg (±6.8). At discharge, there was a significantly increased risk of obesity in male (odds ratio = 1.7 [95% confidence interval 1.3–2.2], p < 0.001) and female (1.3, 1.2–1.5, p < 0.001) patients with hyperthyroidism compared with the background population. Treatment with 131I was associated with additional weight gain (0.6 kg, 0.4–0.8, p < 0.001), compared with ATD treatment alone. More weight gain was seen if serum thyrotropin (TSH) was markedly increased (TSH >10 mIU/L; 0.5 kg, 0.3–0.7, p < 0.001) or free thyroxine (fT4) was reduced (fT4 ≤ 10 pmol/L (0.8 ng/dL); 0.3 kg, 0.1–0.4, p < 0.001) during follow-up. Initiation of levothyroxine was associated with further weight gain (0.4 kg, 0.2–0.6, p < 0.001) and the predicted excess weight gain in 131I-induced hypothyroidism was 1.8 kg. Conclusions: Treatment for hyperthyroidism is associated with significant risks of becoming obese. 131I treatment and subsequent development of hypothyroidism were associated with small but significant amounts of excess weight gain compared with ATD alone. We advocate that the discussion over the weight “overshoot” risk forms part of the individualized treatment decision-making process.
    • Patients’ experiences with home parental nutrition: A grounded theory study

      Wong, C.; Lucas, Beverley J.; Wood, Diana (2018-04)
      Background & aims Parenteral nutrition (PN) provides nourishment and hydration as an intravenous infusion to patients with intestinal failure (IF). The aim of the study is to generate theory that explains the experiences of adult patients living with home parenteral nutrition (HPN) and complex medication regimens. Methods A grounded theory methodology was used to explore the experiences of twelve patients receiving HPN. A semi-structured interview was conducted and recorded in each participant's home setting. Each interview was transcribed verbatim. The simultaneous process of data collection and analysis was followed reflecting the principles of the constant comparative approach. Results A total of 15 patients gave written consent, with 12 of them agreeing to be interviewed. All the participants had previously undergone surgery as a result of chronic ill health or sudden illness. Analysis revealed two core categories: stoma and HPN, and these were supported by the subcategories: maintaining stoma output, access to toilets, managing dietary changes, maintaining the HPN infusion routine, access to technical help to set up an HPN infusion, mobility with HPN equipment and general health changes. The strategy of living with loss was demonstrated by all the participants, and this was supported by the action strategies of maintaining daily activities and social interactions. Conclusions This study generates new understanding and insight into the views and experiences of patients receiving HPN in the UK. The findings from these participants have been shown to resonate with the Kubler-Ross Model [1] of the five stages of grief. The theory of living with loss was generated by the use of a grounded theory methodology. This small scale exploratory study reveals opportunities for improvements in practice to be considered by the nutrition support team (NST) and other healthcare professionals involved in the patient's hospital stay prior to discharge on HPN.
    • Patients’ experiences with home parenteral nutrition: a literature review

      Wong, C.; Lucas, Beverley J.; Wood, Diana (2015)
      Aim The aim of this review is to summarise the literature relating to patients’ experiences with home parenteral nutrition (HPN). Method This literature review is based on searches of CINAHL, PubMed, Web of Knowledge and Web of Science for articles published between 1970 and 2013. Additional studies were included from Department of Health publications, NICE clinical guidance, UK patient support group with interests in HPN or intestinal failure (IF). Results Patients with severe IF have been successfully treated with HPN since the 1970s. Early published studies evaluated clinical outcomes such as catheter-related infections, metabolic complications, thrombosis of the catheterised vein and liver impairment. Since the 1980s questionnaire studies were used to evaluate the quality of life (QoL) of patients treated with HPN. These early studies used QoL assessment tools which were not validated for patients treated with HPN. Internationally, there were published qualitative research studies which explored the experiences of patients treated with HPN. Conclusions The long-term outcome of patients treated with HPN continues to attract research interest. The review of the literature did not identify any published qualitative studies on the experiences of patients treated with HPN in the UK, suggesting a gap in the research. The UK National Health Service advocates a patient-centred approach for service design and delivery in primary and secondary care. This literature review has highlighted opportunities for qualitative research into the experiences of patients living with HPN to achieve better understanding and awareness of the rehabilitation of these patients