Ethical values and principles to guide the fair allocation of resources in response to a pandemic: a rapid systematic review.

BACKGROUND: The coronavirus 2019 pandemic placed unprecedented pressures on healthcare services and magnified ethical dilemmas related to how resources should be allocated. These resources include, among others, personal protective equipment, personnel, life-saving equipment, and vaccines. Decision-makers have therefore sought ethical decision-making tools so that resources are distributed both swiftly and equitably. To support the development of such a decision-making tool, a systematic review of the literature on relevant ethical values and principles was undertaken. The aim of this review was to identify ethical values and principles in the literature which relate to the equitable allocation of resources in response to an acute public health threat, such as a pandemic. METHODS: A rapid systematic review was conducted using MEDLINE, EMBASE, Google Scholar, LitCOVID and relevant reference lists. The time period of the search was January 2000 to 6th April 2020, and the search was restricted to human studies. January 2000 was selected as a start date as the aim was to capture ethical values and principles within acute public health threat situations. No restrictions were made with regard to language. Ethical values and principles were extracted and examined thematically. RESULTS: A total of 1,618 articles were identified. After screening and application of eligibility criteria, 169 papers were included in the thematic synthesis. The most commonly mentioned ethical values and principles were: Equity, reciprocity, transparency, justice, duty to care, liberty, utility, stewardship, trust and proportionality. In some cases, ethical principles were conflicting, for example, Protection of the Public from Harm and Liberty. CONCLUSIONS: Allocation of resources in response to acute public health threats is challenging and must be simultaneously guided by many ethical principles and values. Ethical decision-making strategies and the prioritisation of different principles and values needs to be discussed with the public in order to prepare for future public health threats. An evidence-based tool to guide decision-makers in making difficult decisions is required. The equitable allocation of resources in response to an acute public health threat is challenging, and many ethical principles may be applied simultaneously. An evidence-based tool to support difficult decisions would be helpful to guide decision-makers.

'You Lose Confidence in Being a Human Being, Never Mind Being a Parent': The Lived Experience of Mothers With Spinal Cord Injury.

Little research to date has explored the experiences of parenting among mothers with Spinal Cord Injury (SCI). The aim of the study was to explore the lived experiences of mothers with SCI. Semi-structured interviews were conducted with eight mothers and an interpretive phenomenological analysis was carried out. Two super-ordinate themes were identified. The first theme, entitled: 'A sit-down mummy: The visibility of differences as a mother with SCI' highlighted how mothers faced challenges when undertaking practical parenting tasks, thus making them feel less than their non-injured peers, and how they navigated the visible and physical intrusion of the wheelchairs in their relationships with their children. The second theme, entitled: 'What kind of mother? Being a good enough parent' reflected mothers' heightened sense of guilt with respect to unmet expectations of the self as mother, and the contrasting positive experiences of availing of support and finding new ways to connect with their children. Clinical implications, methodological considerations and future directions are discussed.

"You were lying in limbo and you knew nothing": a thematic analysis of the information needs of spinal cord injured patients and family members in acute care.

PURPOSE: To address the lack of research on the information needs of spinal cord injured (SCI) patients and family members in acute care, in order to inform the provision of appropriate information supports. MATERIALS AND METHODS: Semi-structured interviews were conducted with seven traumatic SCI patients and six family members. Reflexive thematic analysis was used to analyse and interpret the data. RESULTS: Five themes were generated: (1) "You were lying in limbo and you knew nothing" describes how being situated in non-specialist acute care limited participants' access to information; (2) "You'll never walk again" is not enough describes the need for information about the effects of SCI and the management of secondary conditions; (3) "The delivery was awful" demonstrates the importance of information being explained clearly and empathically; (4) "It was going in one ear and out the other" highlights the need for ongoing conversations with healthcare professionals, as retaining information provided in the early stages post-injury is often difficult; and (5) "Hope" not "false hope" discusses the importance of giving patients and family members hope while simultaneously being realistic about potential recovery. CONCLUSIONS: SCI patients and family members had significant unmet information needs in acute care.IMPLICATIONS FOR REHABILITATIONSCI patients and family members had significant unmet information needs while in acute care. Being in non-specialist acute care significantly limited most participants' access to information.During the acute phase of care, most patients and family members would like to know the patient's recovery prognosis, the impact of SCI on the patient's functional independence, how to manage secondary complications, and what to expect in rehabilitation.As patients and family members often had difficulty absorbing information in the early stages post-injury, information should be continuously repeated, reinforced and clarified.HCPs should promote realistic hope for SCI patients and family members even in the absence of neurological recovery, by focusing on what the patient is still capable of while being honest about their prognosis.

Self-care in spinal cord injuries inventory (SC-SCII) and self-care self-efficacy scale in spinal cord injuries (SCSES-SCI): development and psychometric properties.

STUDY DESIGN: Validation cross-sectional study. OBJECTIVES: To develop and assess the psychometric properties of two instruments based on the middle-range theory of self-care in chronic illness: the Self-Care in Spinal Cord Injuries Inventory (SC-SCII) and the Self-Care Self-Efficacy Scale in Spinal Cord Injuries (SCSES-SCI). SETTING: Multicenter study in five spinal units across Italy and Ireland. METHODS: Instrument development was based on self-care behaviours identified in the scientific literature. Behaviours were grouped into four dimensions during a consensus conference: self-care maintenance, self-care monitoring, self-care management and self-care self-efficacy. Sixty-seven items were subsequently generated based on these dimensions. A multidisciplinary group of 40 experts evaluated content validity. Dimensionality of the final items was tested by confirmatory factor analyses (CFA) with a sample of 318 participants. Internal consistency and test-retest reliability were evaluated for each dimension. Construct validity was assessed using correlations between items and scoring differences amongst participants with more severe conditions and secondary complications. RESULTS: Content validity of the SC-SCII and SCSES-SCI was satisfactory for thirty-five of the previously generated items, which were further refined. CFA showed comparative fit indexes ranging from 0.94 to 0.97 and root mean square errors of approximation from 0.03 to 0.07. Internal consistency ranged from 0.71 to 0.85, and intraclass correlation coefficients were higher than 0.70. Correlations among dimensions were moderate, and the theoretical hypotheses formulated when designing the instruments were largely confirmed. CONCLUSIONS: The SC-SCII and the SCSES-SCI represent valid and reliable theoretically-grounded instruments to assess self-care in people with spinal cord injury.

"Not a whole woman": an interpretative phenomenological analysis of the lived experience of women's body image and sexuality following amputation.

Background: Lower-limb amputations can lead to depression, performance anxiety, altered body image, relationships and sexual well-being. However, there is little published literature investigating how people experience changes to body image and their sexuality post-amputation and minimal literature exploring sexuality specifically from the female perspective post-amputation.Purpose: To gain an in-depth understanding of women's experience of sexuality and body image following amputation of a lower limb to inform rehabilitation and clinical practice.Method: Semi-structured interviews with female amputees (n = 9) were conducted to collect rich contextual data. This qualitative data was analysed using Interpretative Phenomenological Analysis (IPA).Results: Three superordinate themes emerged from IPA data analysis: "I don't like the way I am", which illustrated participants' changed relationship with their embodied selves, "Broken/not wanted" which reflected changes participants experienced in their romantic relationships, and "Same but different" which related to participants' changed societal roles as women.Discussion: Participants' accounts highlighted experiences of decreased sexual well-being, disrupted body image, stigmatisation and resilience. These accounts point to the potential utility of compassion focused approaches in therapeutic intervention, as well as the necessity for health professionals to involve spouses in sexual rehabilitation conversations and encourage patient-led peer support networks.Implications for rehabilitationPsychosexual assessment following limb loss involving open-ended questions will likely capture issues of sexual well-being as well as functioning, ensuring that interventions are comprehensive, targeted and relevant to the individual.Women struggle with reconciling their post-amputation kinetic representations of their selves to new ways of functioning, which may impact body image and prosthesis uptake.Compassion focused psychotherapeutic interventions could be effective in addressing problematic coping strategies post-amputation such as avoidance and disengagement while enhancing more self-compassionate coping styles.Couples distressed about their relationship may not engage in problem-solving discussions around sexuality, highlighting the necessity for health professionals to involve spouses in sexual rehabilitation conversations and interventions.Supporting the creation of gendered, peer-led groups to address issues related to sexual well-being is likely to improve overall quality of life for these individuals.

"The things that people can't see" The impact of TBI on relationships: an interpretative phenomenological analysis.

Objective: To explore the impact of TBI on couple relationships, from the perspective of both injured and uninjured partners in the relationship.Method: In-depth, semi-structured interviews were conducted with six uninjured women and five of their male partners living with TBI for between four and eight years who had attended a tertiary neurorehabilitation service. The principles of Interpretative Phenomenological Analysis (IPA) were used to analyze the data.Results: The three major themes emerged. Broken Bonds: "those special things just between the two of us" captures the emotional fallout from TBI on each individual and on the relationship; New Dynamics: "like oil and water" describes the effect of individual changes on relationship dynamics in general, on sexuality, conflict and family life; Moving Forward Together: "We figure it out" describes coping strategies in maintaining relationships post-TBI including hope, time, understanding TBI and positive reappraisal.Conclusions: This research provides an in-depth, phenomenological account of couples' experiences of the impact of TBI on relationships, including the perspectives of both TBI survivors and their partners. The three major themes that emerged capture the stresses that impinge on relationships post-TBI and confirms the importance of supportive clinical interventions for couples as an essential component of neurorehabilitation.

The Relationship Between Psychological and Physical Secondary Conditions and Family Caregiver Burden in Spinal Cord Injury: A Correlational Study.

Background: Caregiver burden (CB) is a consequence of providing care to people with spinal cord injury (SCI). However, there is a lack of clarity about the influence of secondary conditions of care recipients on family caregivers. Secondary conditions refer to the physical and psychological complications that can occur after SCI and lead to increased hospitalization and reduced functionality, quality of life, and social participation. Objective: To assess the impact of physical and psychological secondary conditions of people with SCI on the perceived burden of family caregivers. Methods: A multicenter, cross-sectional study of 56 dyads of family caregivers and individuals with SCI in two urban spinal units in Italy and Ireland. Care recipients completed a toolset consisting of demographic information and assessments of functional, physical, and psychological health. Caregivers completed a multidimensional measure of CB. Bivariate data analysis was used. Results: No significant differences between centers were identified. CB was found to be related to physical secondary conditions and functional independence but not to mental health of care recipients. Bladder dysfunction and urinary tract infections influenced all dimensions of CB, whereas pressure injuries influenced only the time-dependent dimension. Level and completeness of injury and duration of caregiving increased CB. Conclusion: Findings indicate the value of a reduction in secondary conditions not just for individuals with SCI but also for their family caregivers. To reduce the individual and family burden of secondary conditions, a two-pronged, multidimensional approach, focusing on self-management for care recipients and psychoeducational support for caregivers, is required.

An internet-delivered cognitive behavioural therapy pain management programme for spinal cord injury pain: A randomized controlled trial.

BACKGROUND: Chronic pain is common after spinal cord injury (SCI) and dedicated SCI cognitive behavioural therapy pain management programmes (CBT-PMPs) have a growing evidence base to support their uptake clinically. The development of internet-delivered treatment options may overcome barriers to the access and uptake of centre-based programmes. This study examines such an approach on quality of lie (QoL), pain, mood and sleep. METHODS: Adults with SCI pain (>3 months) were recruited and randomly assigned to the intervention or control group. The intervention comprised a six module CBT-PMP delivered once weekly. A blinded assessor determined changes in self-reported outcome measures post-intervention and at 3 months. Linear mixed models and effect sizes based on changes between groups were reported. Significance was set p < 0.05. RESULTS: The recruitment rate was 32% (intervention n = 35, control n = 34), and the drop-out rate at 3 months was 26%. On average, participants accessed three (SD 2.1) of six modules. While no difference in QoL was reported, a significant group*time interaction was found for NRS of current pain (χ2  = 8.22, p = 0.016), worst pain (χ2  = 11.20, p = 0.004), and Brief Pain Inventory (interference) (χ2  = 6.924, p = 0.031). Moderate to large effect sizes favouring the intervention were demonstrated at each time point for the pain metrics (Cohen's d: 0.38-0.84). At 3-month follow-up, 48% of the intervention group rated themselves improved or very much improved (p < 0.05). CONCLUSIONS: This study demonstrates the potential of an internet-delivered SCI specific CBT-PMP in reporting significant statistical and clinical benefit in pain intensity and interference. Strategies to improve engagement are needed.

Taking back a little of what you have lost: the meaning of using an Environmental Control System (ECS) for people with high cervical spinal cord injury.

PURPOSE: Assistive technologies have deep and personal meanings for people with disabilities. This study sought to provide an in-depth exploration of the subjective meaning of Environmental Control System (ECS) use for people with high cervical spinal cord injury. MATERIALS AND METHOD: Interpretative Phenomenological Analysis (IPA) was used to explore the personal meaning of ECS. In-depth interviews with five participants were analyzed according to recommended IPA guidelines to produce a rich phenomenological account of lived experience. RESULTS: This study identified two overarching themes, one of which was the subject of an earlier publication. This paper focuses on the second theme "taking back a little of what you have lost" and its two main components "reclaiming a little doing" and "feeling enabled". Doing everyday things, being less dependent on others and feeling safer and less needy all contributed to participants experience of regaining something important of what had been lost. CONCLUSIONS: A nuanced range of meanings, demonstrating how "a little can mean a lot" emerged from this study. For those with high cervical spinal cord injury, "reclaiming a little doing" resulted in subtle, but subjectively significant, improvements in identity, relationships and well-being, while "feeling enabled" was both enjoyable and empowering and led to an increased sense of safety and reduced neediness. The potentially powerful impact on individuals with life-altering injuries of reclaiming a little of what they had lost, supports the value of more widespread access to and provision of ECS. Implications for rehabilitation While ECS use produces only a "little" objective change in activity levels, it subjectively means "a lot" to people with high level injuries. ECS enable people to "do" everyday things as well help in supporting them to "feel" less dependent and needy. Using ECS facilitates much more than functional tasks and a sense of security. It helps promote positive self-perception and continuity of being. It is important for those with high cervical spinal cord injuries to have access to ECS to ensure they can enjoy both psychological and physical benefits.

Experiences of using an Environmental Control System (ECS) for persons with high cervical spinal cord injury: the interplay between hassle and engagement.

PURPOSE: Environmental Control Systems (ECS) have many benefits; however studies of personal experience of ECS use are scarce. This qualitative study explored the insiders' experience of using an ECS. METHOD: An ECS starter-pack was compiled and trialled for an eight-week period with six persons with high spinal cord injuries (SCI) living in Ireland. Semi-structured interviews were subsequently completed with each person and analysed using Interpretative Phenomenological Analysis (IPA). FINDINGS: Two major themes emerged: "Taking back a little of what has been lost", and "Getting used to ECS" which is the focus of the current paper. This theme captured a dynamic interplay between the experience of "hassle" and "engagement" for new users of ECS. "Hassle" resulted from technological frustrations and the challenge of breaking familiar habits, while "Engagement" resulted from feeling good, having fun and being surprised. CONCLUSIONS: The complex interweaving of hassle and engagement experienced by new ECS users reflects the clinical experience of rehabilitation providers. The importance of overcoming initial hassle needs to be understood by clinicians and users in order to maximise the potential benefit of ECS. Non-use must be considered one reasonable outcome if based on realistic ECS trials.

Mixed methods evaluation of an interdisciplinary sexuality education programme for staff working with people who have an acquired physical disability.

AIM: . To report a study evaluating the effectiveness of a 1-day interdisciplinary sexuality education programme for staff working with people with acquired physical disability. BACKGROUND: Changes associated with an acquired physical disability can diminish a person's self-esteem, sense of attractiveness, relationships, and sexual functioning. Research suggests that people are dissatisfied with the quality of information and support around sexuality during their rehabilitation. DESIGN: A mixed methods design was used, involving pretest and posttest questionnaires and interviews. METHODS: Questionnaire data were analysed using descriptive statistics and paired samples t-tests to evaluate the effects of the programme on knowledge, skills, and comfort. Interview data were analyzed thematically, with particular emphasis on participants' opinions about the application of the course within practice. Participants were working in the area of acquired disability and rehabilitation, and were drawn from a number of disciplines. Data were collected between 2008-2009. RESULTS: Comparison of the pre- and postmeasures, based on paired samples t-tests, showed that the programme statistically significantly increased participants' knowledge, skills, and comfort. Participants felt positive and enthusiastic about the programme and reported numerous incidents where they were more willing to raise issues for discussion and create a supportive listening space for patients to talk about their concerns around sexuality. CONCLUSION: Providing healthcare practitioners with a 1-day programme leads to positive changes in knowledge, skills, and comfort towards sexuality. Sexuality education may be an ideal topic for bringing practitioners together within an interdisciplinary education context.

Electronic aids to daily living: be able to do what you want.

PURPOSE: This study explores the experiences of Irish people with high cervical spinal cord injuries living with electronic aids to daily living (EADL) and the meaning attributed to such systems in the context of participation in everyday life. METHOD: Qualitative methodology using a phenomenological approach was used to explore the phenomenon of living with EADL. Data were collected using four focus groups of users and nonusers of EADL (n = 15). All participants had high cervical spinal cord injuries (C3-5). Groups were video recorded, transcribed verbatim and analysed using descriptive phenomenological analysis. FINDINGS: Findings revealed key elements of the meaning of living with EADL. Two key themes, time alone and changed relationships are described. These contribute to the super ordinate theme of autonomy. Findings suggest that participants perceived improvements in both anticipated and actual lived experiences with EADL. Themes are interrelated and together represent a summary of the experience of living with environmental controls. The themes described are similar to those found in other spinal injury studies relating to quality of life. CONCLUSIONS: Findings highlight differences in life experiences for those with and without EADL and provides motivation to address this difference. Such insights are valuable for both users and providers of EADL.