Joseph Low

Measuring spiritual belief: development and standardization of a Beliefs and Values Scale

BACKGROUND Higher levels of religious involvement are modestly associated with better health, after taking account of other influences, such as age, sex and social support. However, little account is taken of spiritual beliefs that are not tied to personal or public religious practice. Our objective was to develop a standardized measure of spirituality for use in clinical research. METHOD We characterized the core components of spirituality using narrative data from a purposive sample of people, some of whom were near the end of their lives. These data were developed into statements in a scale to measure strength of spiritual beliefs and its reliability, validity and factor structure were evaluated in order to reach a final version. RESULTS Thirty-nine people took part in the qualitative study to define the nature of spirituality in their lives. These data were used to construct a 47-item instrument that was evaluated in 372 people recruited in medical and non-medical settings. Analysis of these statements led to a 24-item version that was evaluated in a further sample of 284 people recruited in similar settings. The final 20-item questionnaire performed with high test-retest and internal reliability and measures spirituality across a broad religious and non-religious perspective. CONCLUSIONS A measure of spiritual belief that is not limited to religious thought, may contribute to research in psychiatry and medicine.

The impact of end-stage kidney disease (ESKD) on close persons: a literature review

Kidney disease is defined as end-stage when a patient’s glomerular filtration rate has fallen to <15 ml/min/ 1.73 m2 [1]. Mortality associated with end-stage kidney disease (ESKD) is high [2]. The incidence of treated ESKD is rising in the western world, with a corresponding increase in the incidence of diabetes and cardiovascular disease, especially in ethnic minority groups. Survival on dialysis has been shown to be poorer in the older age group, especially in patients with increased comorbidity and in those whose functional status at the start of dialysis is poor [3]. Whilst renal transplant rates vary between different countries [4], the liberalization in the acceptance of older people into renal replacement therapy (RRT) programmes, together with changes in population demographics and the fact that kidney transplantation is less suitable for this group of older patients, means that dialysis may be the only treatment option available for an increasing number of patients aged 65 years and over [5]. Recent health policy changes in the OECD countries [6,7] acknowledge that end of life care may be more appropriate for some of these people, and maximum conservative management programmes (where residual renal function is supported, haemoglobin levels maintained and symptoms relieved) have been introduced into many renal units, particularly in the United Kingdom [6]. The onset of ESKD and subsequent recommendation of dialysis as a treatment option involves a change in lifestyle for both patients and close persons [8]. Even before end-stage disease is reached, as renal function deteriorates,

The Subjective Index of Physical and Social Outcome: its usefulness in a younger stroke population

Studies on stroke subjects that aim to improve their well-being or community support have not been shown to be effective when measures of disability and handicap have been employed. This paper illustrates the usefulness of the Subjective Index of Physical and Social Outcome (SIPSO) with young adults following a stroke. The study comprised a cross-sectional survey of people (57% male; 39% female; median age 55.7) with a stroke (1–10 years ago), aged 18–65, recruited via NHS stroke registers and young stroke groups (response rate 53%). The SIPSO was incorporated into a postal needs-assessment questionnaire. Median SIPSO score: 24.5 (IQR 17–32). The SIPSO internal reliability: ICC 0.91 (95% CI, 0.90–0.92), item to total SIPSO correlations ranged from 0.52–0.83. The SIPSO construct validity was good: those with poorer employment, mobility and sex-life outcomes had lower SIPSO scores than those with better outcomes; there was no association between age and SIPSO scores, SIPSO scores were not significantly different for men and women. Test–retest reliability was good. The SIPSO had excellent reliability and validity properties in his population. Further work on its responsiveness needs to be carried out. The measurement of personal experience of integration can be a vital basis for effective clinical care.

The Subjective Index for Physical and Social Outcome (SIPSO) in Stroke: investigation of its subscale structure

BackgroundShort and valid measures of the impact of a stroke on integration are required in health and social settings. The Subjective Index of Physical and Social Outcome (SIPSO) is one such measure. However, there are questions whether scores can be summed into a total score or whether subscale scores should be calculated. This paper aims to provide clarity on the internal construct validity of the subscales and the total scale.MethodsSIPSO data were collected as part of two parallel surveys of the met and unmet needs of 445 younger people (aged 18-65) with non-recent stroke (at least one year) and living at home. Factor, Mokken and Rasch analysis were used.ResultsFactor analysis supported a two factor structure (explaining 68% of the variance) as did the Mokken analysis (overall Loevinger coefficient 0.77 for the Physical Integration subscale; 0.51 for the Social Integration subscale). Both subscales fitted the Rasch model (P > 0.01) after adjusting for some observed differential item functioning. The 10-items together did not fit the Rasch model.ConclusionsThe SIPSO subscales are valid for use with stroke patients of working age but the total SIPSO is not. The conversion table can be used by clinicians and researchers to convert ordinal data to interval level prior to mathematical operations and other parametric procedures. Further work is required to explore the occurrence of bias by gender for some of the items.

End-of-life care for homeless people: A qualitative analysis exploring the challenges to access and provision of palliative care:

Background: Being homeless or vulnerably housed is associated with death at a young age, frequently related to medical problems complicated by drug or alcohol dependence. Homeless people experience high symptom burden at the end of life, yet palliative care service use is limited. Aim: To explore the views and experiences of current and formerly homeless people, frontline homelessness staff (from hostels, day centres and outreach teams) and health- and social-care providers, regarding challenges to supporting homeless people with advanced ill health, and to make suggestions for improving care. Design: Thematic analysis of data collected using focus groups and interviews. Participants: Single homeless people (n = 28), formerly homeless people (n = 10), health- and social-care providers (n = 48), hostel staff (n = 30) and outreach staff (n = 10). Results: This research documents growing concern that many homeless people are dying in unsupported, unacceptable situations. It highlights the complexities of identifying who is palliative and lack of appropriate places of care for people who are homeless with high support needs, particularly in combination with substance misuse issues. Conclusion: Due to the lack of alternatives, homeless people with advanced ill health often remain in hostels. Conflict between the recovery-focused nature of many services and the realities of health and illness for often young homeless people result in a lack of person-centred care. Greater multidisciplinary working, extended in-reach into hostels from health and social services and training for all professional groups along with more access to appropriate supported accommodation are required to improve care for homeless people with advanced ill health.

Palliative care for cirrhosis: a UK survey of health professionals' perceptions, current practice and future needs

Objective To determine the knowledge and practice patterns of a UK cohort of relevant healthcare professionals (HCPs) about delivering palliative care in cirrhosis, and to inform priorities for future research. Design An on-line questionnaire survey with closed and open responses. Setting HCPs identified from the mailing list of special interest groups in hepatology and gastroenterology (liver), general practice and specialist palliative care (SPC) across the UK. Results Of the 6181 potential contacts identified, 517 HCPs responded. Most believed a role exists for SPC in caring for people with cirrhosis, but many SPC HCPs felt ill prepared to provide good care to those facing death. Further training was needed in managing liver-related symptoms, symptom control and end of life issues. All HCP groups wished to increase community provision of palliative care support, but many general practitioners felt unable to manage advanced cirrhosis in the community. There were differences in the optimal trigger for SPC referral with liver HCPs less likely to refer at symptom deterioration. Prognostication, symptom management and service configuration were key areas identified for future research. Conclusions All who responded acknowledged the role of SPC in caring for those dying with cirrhosis and need for further training to improve confidence and enable joint working between SPC, general practice and liver teams. Low response rates make it difficult to generalise these findings, which require further validation.

Advanced chronic liver disease in the last year of life: a mixed methods study to understand how care in a specialist liver unit could be improved

Objective To identify the limitations in palliative care provision in the last year of life for people with liver cirrhosis and potential barriers to and enablers of palliative care. Design Mixed methods, including a retrospective case note review, qualitative focus groups and individual interviews. Setting A tertiary referral liver centre in the south of England (UK). Participants Purposively selected case notes of 30 people with cirrhosis who attended the tertiary referral liver centre and died during an 18-month period; a purposive sample of 22 liver health professionals who participated in either focus groups or individual interviews. Primary and secondary outcomes Data collected from case notes included hospital admissions, documented discussions of prognosis and palliative care provision. Qualitative methods explored management of people with cirrhosis, and barriers to and enablers of palliative care. Results Participants had high rates of hospital admissions and symptom burden. Clinicians rarely discussed prognosis or future care preferences; they lacked the skills and confidence to initiate discussions. Palliative care provision occurred late because clinicians were reluctant to refer due to their perception that reduced liver function is reversible, poor understanding of the potential of a palliative approach; palliative care was perceived negatively by patients and families. Conclusions People dying with cirrhosis have unpredictable trajectories, but share a common pathway of frequent admissions and worsening symptoms as death approaches. The use of clinical tools to identify the point of irreversible deterioration and joint working between liver services and palliative care may improve care for people with cirrhosis.

Challenges to discussing palliative care with people experiencing homelessness: a qualitative study

Objectives To explore the views and experiences of people who are homeless and those supporting them regarding conversations and approaches to palliative care Setting Data were collected between October 2015 and October 2016 in homeless hostels and day centres and with staff from primary and secondary healthcare providers and social care services from three London boroughs. Participants People experiencing homelessness (n=28), formerly homeless people (n=10), health and social care providers (n=48), hostel staff (n=30) and outreach staff (n=10). Methods In this qualitative descriptive study, participants were recruited to interviews and focus groups across three London boroughs. Views and experiences of end-of-life care were explored with people with personal experience of homelessness, health and social care professionals and hostel and outreach staff. Saturation was reached when no new themes emerged from discussions. Results 28 focus groups and 10 individual interviews were conducted. Participants highlighted that conversations exploring future care preferences and palliative care with people experiencing homelessness are rare. Themes identified as challenges to such conversations included attitudes to death; the recovery focused nature of services for people experiencing homelessness; uncertainty regarding prognosis and place of care; and fear of negative impact. Conclusions This research highlights the need for a different approach to supporting people who are homeless and are experiencing advanced ill health, one that incorporates uncertainty and promotes well-being, dignity and choice. We propose parallel planning and mapping as a way of working with uncertainty. We acknowledge that these approaches will not always be straightforward, nor will they be suitable for everyone, yet moving the focus of conversations about the future away from death and dying, towards the present and the future may facilitate conversations and enable the wishes of people who are homeless to be known and explored.

Acceptance and commitment therapy for adults with advanced cancer (CanACT): study protocol for a feasibility randomised controlled trial.

BackgroundOne-third of people with cancer experience psychological distress and may suppress distressing thoughts, emotions, and concerns, leading to further problems. Conventional psychological treatments reduce distress by problem solving, but in advanced cancer, when ill health is progressive and death may be approaching, physical and psychological difficulties are complex and have no simple solutions. Acceptance and Commitment Therapy encourages acknowledgement and acceptance of mental experiences, increasing people’s ability to work with problems that cannot be solved. Previous pilot work in advanced cancer confirms that distress can be associated with an avoidance of experiencing uncomfortable thoughts and emotions.Methods/DesignThis feasibility randomised controlled trial of Acceptance Commitment Therapy aims to establish parameters for a larger trial. Fifty-four participants with advanced cancer will be randomly allocated to up to eight sessions (each 1 hour) of Acceptance Commitment Therapy or a talking control. Participants will be recruited from those attending outpatient services and hospice day care at three specialist palliative care units in North and East London, United Kingdom. The primary outcome is a measure of functioning in four areas of life (physical, social/family, emotional, and general activity) using the Functional Assessment of Cancer Therapies - General questionnaire at 3 months after randomisation. Secondary outcomes are (i) acceptance using the Acceptance and Action Questionnaire; (ii) psychological distress using the Kessler Psychological Distress Scale; (iii) physical functioning using a timed walk and sit-to-stand test; and (iv) quality of life measures including the Euroqol-5 Dimensions and ICECAP Supportive Care measures. Qualitative data will be collected at 3 months to explore the participants’ experiences of the trial and therapy. Data will be collected on the costs of care.DiscussionData generated on the recruitment, retention, and experience of the interventions and the usefulness of the outcome measures will inform the adaptations required and whether changes in function are consistent with existing data when planning for a sufficiently powered randomised controlled trial.Trial registrationISRCTN13841211 (registered 22 July 2015).

Why do we offer palliative care so late to patients with liver disease

Patients with advanced liver disease carry a high symptom burden and short life expectancy, but receive limited supportive and palliative care1. Providing planned day care for large volume paracentesis reduced costs, inpatient bed days and probability of dying in hospital after an unplanned admission1. These recent findings illustrate how care to people with advanced liver disease can be improved with the burden on acute service alleviated by the adoption of day-case models across the UK. This point is timely as palliative care provision for this group is poor, often occurring near to the patients’ death2. Why is this? It is recognised that prognosis or future care needs are often not discussed with liver patients until the very late stages of the disease. Clinicians report that they lack the expertise and confidence to initiate these discussions and a limited understanding about what palliative care can offer, and believe that patients have negative expectations of palliative care referral2. Conversations regarding palliation often introduces family members into the patient and clinician relationship, and family members may be resistant to the idea of palliative care2. Furthermore, many clinicians find it difficult to identify the point of ‘deterioration’ due to the fluctuating disease trajectory of advanced cirrhosis.