Development and Psychometric Properties of Surveys to Assess Patient and Family Caregiver Experience with Care Transitions

Background The purpose of this study was to develop and administer surveys that assess patient and family caregiver experiences with care transitions and examine the psychometric properties of the surveys. The surveys were designed to ask about 1) the transitional care services that matter most to patients and their caregivers and 2) care outcomes, including the overall quality of transitional care they received, patient self-reported health, and caregiver effort/stress. Methods Survey items were developed based on a review of the literature, existing surveys, focus groups, site visits, stakeholder and expert input, and patient and caregiver cognitive interviews. We administered mail surveys with telephone follow up to patients recently discharged from 43 U.S. hospitals. Patients identified the caregivers who helped them during their hospital stay (Time 1 caregiver) and when they were home (Time 2 caregiver). Time 1 and Time 2 caregivers were surveyed by telephone only. The psychometric properties of the survey items and outcome composite measures were examined for each of the three surveys. Items that performed poorly across multiple analyses, including those with low variability and/or a high missing data, were dropped except when they were conceptually important. Results The analysis datasets included responses from 9282 patients, 1245 Time 1 caregivers and 1749 Time 2 caregivers. The construct validity of the three proposed outcome composite measures—Overall Quality of Transitional Care (patient and caregiver surveys), Patient Overall Health (patient survey) and Caregiver Effort/Stress (caregiver surveys) —was supported by acceptable exploratory factor analysis results and acceptable internal consistency reliability. Site-level reliability was acceptable for the two patient outcome composite measures, but was low for Caregiver Effort/Stress (\u3c 0.70). In all surveys, the Overall Quality of Transitional Care outcome composite measure was significantly correlated with other outcome composite measures and most of the single-item measures. Conclusions Overall, the final patient and caregiver surveys are psychometrically sound and can be used by health systems, hospitals, and researchers to assess the quality of care transitions and related outcomes. Results from these surveys can be used to improve care transitions, focusing on what matters most to patients and their family caregivers

A DNP Quality Improvement Project to Assess the Traumatic Brain Injury Survivor and their Family Caregivers\u27 Coping and Resiliency

Abstract Background: Traumatic brain injury (TBI) support groups are vital to TBI survivors in the community and provide resources to family caregivers (FCs) to mitigate caregiver burden. Resiliency is a necessary characteristic to cope with chronic diseases and the demands of caregiving. However, a gap exists in how TBI support groups mitigate family stress and empower coping and resiliency for the TBI survivor and FCs. Method: The quality improvement project assessed TBI survivors\u27 and FCs\u27 coping and resiliency before and after an educational module on coping, resiliency, and self-care strategies. Intervention: A quality improvement project in a support group of (n=13) TBI survivors and FCs to assess coping and resiliency with pre and post-surveys utilizing Connor-Davidson Resilience Scale 10 (CD- RISC 10) © after an educational intervention on self-care, coping, and resiliency. Results: All the FCs scored in the lowest 25% (0-29), indicating difficulty bouncing back from adversity. A significant increase (five) in post-intervention scores was seen in the TBI survivor compared to the FCs scores (M = 23.40, SD = 0.89, n = 5) when compared to the TBI survivors\u27 total scores (M = 32.14, SD = 3.37, n = 8), z = -2.02, p = .043, with a small effect size, r = -0.42. Conclusion: The FCs\u27 low scores may indicate caregiver burden, some TBI survivors and all FCs\u27 scores may indicate other factors for further investigation. Key Words: TBI, Traumatic brain injury, family caregiver, caregiver burden, patient teaching, patient education, informal caregiver, preparedness, coping, resiliency, support group

Patient and family caregiver perspectives of Advance Care Planning: qualitative findings from the ACTION cluster randomised controlled trial of an adapted respecting choices intervention

Advance Care Planning (ACP) is widely regarded as a component of good end-of-life care. However, findings from a qualitative international study of patient and family caregiver attitudes and preferences regarding ACP highlight participants’ ambivalence towards confronting the future and the factors underlying their motivation to accept or defer anticipatory planning. They show how ACP impacts on, and can be determined by, relationships between patients and their family caregivers. Although some patients may welcome the chance to engage in ACP a tendency towards either therapeutic optimism or fatalism can limit its perceived appeal or benefit. The focus on individual autonomy as an ethical principle underlying ACP does not resonate with real world settings. Many patients naturally orient to share responsibility and decision making within the network of significant others in which they are embedded, rather than exert unfettered freedom of ‘choice’

Family and health-care professionals managing medicines for patients with serious and terminal illness at home: a qualitative study

BackgroundMore effective ways of managing symptoms of chronic and terminal illness enable patients to be cared for, and to die, at home. This requires patients and family caregivers to manage complex medicines regimens, including powerful painkillers that can have serious side effects. Little is known about how patients and family caregivers manage the physical and emotional work of managing medicines in the home or the support that they receive from health-care professionals and services.ObjectiveTo investigate how patients with serious and terminal illness, their family caregivers and the health-care professionals manage complex medication regimens and routines of care in the domestic setting.DesignA qualitative study involving (1) semistructured interviews and group discussions with 40 health-care professionals and 21 bereaved family caregivers, (2) 20 patient case studies with up to 4 months’ follow-up and (3) two end-of-project stakeholder workshops.SettingThis took place in Nottinghamshire and Leicestershire, UK.ResultsAs patients’ health deteriorated, family caregivers assumed the role of a care co-ordinator, undertaking the everyday work of organising and collecting prescriptions and storing and administering medicines around other care tasks and daily routines. Participants described the difficulties of navigating a complex and fragmented system and the need to remain vigilant about medicines prescribed, especially when changes were made by different professionals. Access to support, resilience and coping capacity are mediated through the resources available to patients, through the relationships that they have with people in their personal and professional networks, and, beyond that, through the wider connections – or disconnections – that these links have with others. Health-care professionals often lacked understanding of the practical and emotional challenges involved. All participants experienced difficulties in communication and organisation within a health-care system that they felt was complicated and poorly co-ordinated. Having a key health professional to support and guide patients and family caregivers through the system was important to a good experience of care.LimitationsThe study achieved diversity in the recruitment of patients, with different characteristics relating to the type of illness and socioeconomic circumstances. However, recruitment of participants from ethnically diverse and disadvantaged or hard-to-reach populations was particularly challenging, and we were unable to include as many participants from these groups as had been originally planned.ConclusionsThe study identified two key and inter-related areas in which patient and family caregiver experience of managing medicines at home in end-of-life care could be improved: (1) reducing work and responsibility for medicines management and (2) improving co-ordination and communication in health care. It is important to be mindful of the need for transparency and open discussion about the extent to which patients and family caregivers can and should be co-opted as proto-professionals in the technically and emotionally demanding tasks of managing medicines at the end of life.Future workPriorities for future research include investigating how allocated key professionals could integrate and co-ordinate care and optimise medicines management; the role of domiciliary home care workers in supporting medicines management in end-of-life care; patient and family perspectives and understanding of anticipatory prescribing and their preferences for involvement in decision-making; the experience of medicines management in terminal illness among minority, disadvantaged and hard-to-reach patient groups; and barriers to and facilitators of increased involvement of community pharmacists in palliative and end-of-life care

Strategies Healthcare Leaders Use to Improve Patient Satisfaction

For all healthcare leaders, patient satisfaction plays a key role in healthcare; poor patient satisfaction within healthcare organizations can lead to poor patient health outcomes, decreased revenue, and poor employee engagement. Grounded in Mayeroff’s theory of caring, the purpose of this qualitative single case study was to explore strategies healthcare leaders use to improve patient satisfaction. The participants consisted of five healthcare leaders in metropolitan Detroit, Michigan, who implemented strategies that improved patient satisfaction. Data was collected using semistructured interviews, archival document review, and data from the Centers for Medicare and Medicaid Services (CMS) Hospital Compare database. Yin’s five-step process was used to analyze data. Four themes emerged: caring for patients through communication, patient-centered care, compliance through CMS patient satisfaction processes, and leadership. A key recommendation for healthcare leaders is to create an environment built on communication amongst staff, patients, and their family members, ensuring that everyone involved in the patients’ care understands the expectations of the patients’ outcome. Implications for positive social change include potentially improving patient care experiences through communication and education by healthcare leaders and healthcare workers, resulting in improved health outcomes within the local communities in metropolitan Detroit, Michigan

The meaning of home for aging women living alone in North Eastern Ontario

The experience and meaning of home for older, community dwelling women, was investigated. In the world of gerontology there is a paucity of knowledge about those in their eighth and ninth decade, and this becomes more pronounced among older women. With the older demographic expanding and resources being directed at keeping seniors in their home- a solid knowledge base is required. This study built on the knowledge that exists around home, aging at home, formal care, and the vulnerabilities of aging in two ways. First, the literature around home was synthesized with an evolutionary concept analysis which served to focus further research. Secondly, an interpretive description study added to the knowledge of home by bringing to light the precariousness of formal and informal care and the effect this precariousness has on the meaning of home. The knowledge built in this study has the ability to inform policy, organizations, education, and individual providers as well as highlighting areas for further research.Masters of Science (M.Sc.) in Nursin

Implementation of a Revised Interim Home Support Protocol for Older Persons in the South

The local Winter Capacity Initiative (WCI) Group was established to integrate community and acute services to improve discharge. The provision of interim home care packages (iHCP) commenced in conjunction with the rollout of the national HSE Home Care Package (HCP) Guidelines and as part of the local WCI plan to aid discharge. This project was established to deal with operational issues encountered relating to discharges supported by iHCP. Its aim was to implement a clear protocol for older persons to be discharged home safely from four acute sites using up to 10 hours interim home support. The HSE Change Model underpinned the implementation. In addition to the protocol a number of additional outcomes were delivered, e.g. referral criteria. The improved protocol was launched by e-mail to relevant line managers for dissemination to their staff and through some direct communication with key stakeholders. Following implementation, the project was evaluated using semi-structured interviews to determine the level of awareness of the protocol and the quality of the outcomes. The aim of the project was met. A streamlined protocol, covering leave periods; clear referral criteria; a multipurpose assessment form; and a new way of disseminating discharge information, were delivered. No trends relating to the allocation of interim home support at any specific times of the year were identified. The recommendations included continued use of the protocol, and further direct communication with front line staff at team meetings regarding the protocol to increase awareness and adherence to the protocol

Perceptions et attentes de personnes âgées impliquées dans un processus de relocalisation à partir d’un hôpital

Étant donné les limites du système de santé à répondre aux besoins des personnes âgées en perte d’indépendance, la relocalisation vers une ressource d’hébergement à partir de l’hôpital est fréquente. Afin d’optimiser l’accompagnement de ces personnes âgées, les infirmières doivent comprendre leurs perceptions et leurs attentes. Toutefois, les connaissances sur le sujet sont peu nombreuses. Basée sur un cadre de référence composé de l’approche écologique et du modèle des soins humanistes de l’Université de Montréal, une étude qualitative descriptive a été réalisée dans le but d’explorer les perceptions et les attentes de personnes âgées en perte d’indépendance, impliquées dans un processus de relocalisation vers une ressource d’hébergement dans le réseau public à partir de l’hôpital. L’échantillon était composé de six personnes âgées en attente de relocalisation recrutées sur cinq unités de soins. Les données qualitatives recueillies à l’aide d’entrevues semi-dirigées ont été analysées par la méthode d’analyse thématique décrite par Braun et Clarke (2006). Les résultats ont démontré que l’expérience des personnes âgées détermine leurs perceptions par rapport aux soins et aux services. Aussi, l’implication des proches dans leur parcours de vie facilite la transition. Les personnes âgées s’attendent à ce que les professionnels de l’hôpital et de la nouvelle ressource répondent à leurs besoins. De plus, ces perceptions et attentes sont influencées par des croyances et des émotions vécues par les personnes âgées. Les nouvelles connaissances issues de cette étude offrent des pistes pour l’accompagnement holistique par les infirmières des personnes âgées en tenant compte de leurs besoins et préoccupations.Given the limitations of the health system in meeting the needs of older people losing independence, relocation to a long-term care home from the hospital is common. Nurses need to understand the perceptions and expectations of older people to support them. However, limited knowledge exists on the subject. Based on the ecological approach and the Université de Montréal’s caring model of nursing care, a qualitative descriptive study was conducted to explore the perceptions and expectations of older people, losing independence, involved in a relocation process to a long-term care home in the public sector from the hospital. The sample consisted of six older persons awaiting relocation recruited on five care units. Qualitative data collected through semi-structured interviews were analyzed using the thematic analysis method described by Braun and Clarke (2006). Results showed that the experience of older people determine their perceptions of care and services. Also, the involvement of relatives in their life course facilitates the transition. Older people expect their needs to be met by both the professionals at the hospital and at the new facility. In addition, these perceptions and expectations are influenced by beliefs and emotions experienced by older people. Knowledge developed with this study offer nurses avenues to support globally older people by considering their needs and concerns