Family caregiver support groups: spiritual reflections' impact on stress management.

OBJECTIVES: Caregiving for people with neurodegenerative disease (e.g. Alzheimer's disease (AD); frontotemporal dementia (FTD)) is provided primarily by the family care system. Caregiving is taxing and much of the caregiving research is guided by a stress/adaptation theoretical perspective. Within this theoretical model, the role of spirituality in rendering meaning to the caregiver role remains unexplored. We conducted a qualitative analysis of expressions of spirituality and its meaningfulness during the caregiving journey within the context of an online video conferencing support group intervention program. METHODS: Eighteen AD and six FTD caregivers participated in the Caring for Others evidence-based program consisting of 10 weekly virtual online support group sessions facilitated by experienced gerontological social workers. RESULTS: Content analysis of the video-recorded group interactions yielded recurrent themes of caregivers' spiritual reflections and their associations with managing caregiver stress responses. CONCLUSION: The findings inform professional observations of the importance of spiritual beliefs in understanding how caregivers ascribe both positive and negative meanings to critical life events and their management.

Persons with brain injury and employment supports: Long-term employment outcomes and use of community-based services.

OBJECTIVES: To understand how employment services (ES) are provided to persons with brain injuries (PWBIs) in Ontario, Canada, and the impact service delivery has on competitive-employment outcomes. DESIGN AND METHODS: A mixed-method case study of one community-based agency that provides specialized services to PWBIs. Relationships between demographic, service-related variables and employment outcomes (2009-2014) were analysed using chi-squares and analyses of variance. In addition, 14 interviews were conducted and analysed using thematic analysis. RESULTS: PWBIs accessed services on average of 16 years post injury; 64% secured at least one competitive-employment job, which was how employment success was defined in this study. Average job tenure was 368 days, and average job intensity was 3.8 hours/day. Employment success was significantly associated (p < 0.05) with use of job development, job coaching, case management and job retention services. Interviews revealed that PWBIs were provided five services: job goal(s) identification, assessment of work-related abilities/skills, job development, on-the-job supports and job retention assistance. Challenges to ES delivery included lack of suitable jobs and hiring incentives, and difficulties in establishing natural supports at the workplace. CONCLUSIONS: PWBIs' employment outcomes may be supported through provision of ES to assist with: the development of realistic job goals and job-finding skills, securing work, on-the-job coaching and advocacy with employers.

Therapy Online: A Web-Based Video Support Group for Family Caregivers of Survivors With Traumatic Brain Injury.

OBJECTIVE: This innovative descriptive study explores the benefits of a traumatic brain injury (TBI) caregiver support group intervention provided using videoconferencing within a password protected Web-based platform. METHODS: Ten caregivers of family members with TBI were registered to a password-protected Web site (Caring for Others) that provided information about caring for a person with TBI and access to a videoconferencing support group intervention program. Where needed, caregivers were provided with computer equipment, Internet access, and training to negotiate the Web site links. Two groups of 5 caregivers of survivors of TBI participated (average age of survivor-20 years, average time since injury-4.6 years) and met online with a trained clinician weekly for 10 sessions. Using directed content analysis, transcripts of each session were coded with NVivo software. RESULTS: The content analysis reported group process themes, therapeutic interventions used, caregiver outcomes, and the challenges for clinicians delivering a therapeutic intervention online. CONCLUSIONS: Traumatic brain injury caregivers shared similar concerns and problem-solving strategies for managing caregiving tasks. Overall, participants found the sessions helpful for managing the emotional impact of caring for a family member with TBI.

Older adults' response to the loss of a spouse: the function of spirituality in understanding the grieving process.

OBJECTIVE: The objective of this study was to examine the role of spirituality in helping older adults grieve the loss of a spouse in the context of a model of group psychotherapy. METHODS: Twenty-four older adults, ranging in age from 65 to 82, whose spouses had died in the previous year, were assigned, in groups of six, to a 14-week group therapy intervention facilitated by trained, experienced co-therapist social workers. All sessions were audio recorded. RESULTS: Qualitative analysis of the four therapy groups at beginning, middle and ending sessions yielded salient themes that illustrate associations between spirituality and shifts in self-identity, mourning the loss and social re-engagement. DISCUSSION: Observed were within process acknowledgement of the role played by spiritual beliefs in mourning the loss of a spouse. Implications for group intervention for older adults grieving the loss of a spouse are discussed.

Qualitative research with small connected communities: generating new knowledge while upholding research ethics.

Qualitative researchers have a dual mission: to generate knowledge through rigorous research and to uphold ethical standards and principles. Qualitative researchers often conduct studies with small connected communities in which relationships exist among community members. When engaging such communities, researchers might face ethical issues in upholding confidentiality standards while they work to achieve their dual mandate. Qualitative scholars have paid little attention to the ethical challenges that might arise in this context. Drawing on our experiences conducting studies with such communities, we expand the dialogue concerning qualitative research ethics by making explicit conceptual and practical tensions that emerge at various stages of the research process; articulating our respective reflective processes; and exploring issues associated with strategies for upholding confidentiality. We conclude with lessons learned to guide researchers who might face similar challenges.

Volunteers' experiences visiting the cognitively impaired in nursing homes: a friendly visiting program.

Two challenges facing nursing-home care today are understanding the concept of quality of life as it relates to cognitively impaired residents and finding effective ways to ensure that it is achieved. Canadian director Allan King's documentary, Memory for Max, Claire, Ida and Company , filmed at Baycrest, captures a method for enhancing the quality of life of six cognitively impaired residents. While the film suggests an intervention model implemented by volunteers, there are challenges unique to institution-based programs (i.e., the recruitment and retention of volunteers). One of the challenges is the fear that volunteers may experience when interacting with the cognitively impaired. We conducted a pilot study of a model for training volunteers to provide friendly visiting and evaluated the impact on the participating residents. Observational accounts of volunteer-resident interactions and seven volunteer interviews were analysed and yielded several themes-(a) relationship building, (b) contribution of the environment, (c) preserving personhood, (d) resident-centred presence and the quality of the moment-and several themes related to the volunteers' role and their perceived impact on the residents. Discussed are the implications for volunteer programs in long-term health care settings.

The big sell: Managing stigma and workplace discrimination following moderate to severe brain injury.

BACKGROUND: Misperceptions regarding persons with brain injuries (PWBI) can lead to stigmatization, workplace discrimination and, in turn, influence PWBIs full vocational integration. OBJECTIVE: In this study we explored how stigma may influence return-to-work processes, experiences of stigma and discrimination at the workplace for persons with (moderate to severe) brain injuries, and strategies that can be employed to manage disclosure. METHODS: Exploratory qualitative study; used in-depth interviews and an inductive thematic analytical approach in data analysis. Ten PWBI and five employment service providers participated. PWBI discussed their work experiences, relationships with supervisors and co-workers and experiences of stigma and/or discrimination at work. Employment service providers discussed their perceptions regarding PWBI's rights and abilities to work, reported incidents of workplace discrimination, and how issues related to stigma, discrimination and disclosure are managed. RESULTS: Three themes were identified: i) public, employer and provider knowledge about brain injury and beliefs about PWBI; ii) incidents of workplace discrimination; iii) disclosure. Misperceptions regarding PWBI persist amongst the public and employers. Incidents of workplace discrimination included social exclusion at the workplace, hiring discrimination, denial of promotion/demotion, harassment, and failure to provide reasonable accommodations. Disclosure decisions required careful consideration of PWBI needs, the type of information that should be shared, and the context in which that information is shared. CONCLUSIONS: Public understanding about PWBI remains limited. PWBI require further assistance to manage disclosure and incidents of workplace discrimination.

Persistent family concerns in long-term care settings: meaning and management.

PURPOSE: The aim of this study was to understand institutional and family caregiver characteristics that contribute to the failure to resolve families' persistent complaints about nursing home care of their relatives. DESIGN AND METHODS: Key informant interviews with 9 family members who had persistent concerns about the care of their relatives were conducted. Two focus groups with 5 nurse managers provided staff perceptions of families whose persistent concerns remained unresolved. Content analysis of both individual interviews and focus groups resulted in the extraction of salient themes. RESULTS: Factors associated with persistent discord between families and staff included caregivers' perceptions of staff as incompetent, interfamilial conflicts, and unresolved psychosocial issues. Institutional factors contributing to persistent negative perceptions of care included staff's vulnerability in the face of challenges to their professional competence and stress due to disproportionate amounts of time spent educating and supporting health care aids to cope with distraught families. IMPLICATIONS: The failure to settle, in a mutually satisfactory manner, the complaints of this subgroup of families is discussed in the context of unresolved family issues that interact with institutional failure to respond in a manner that conveys understanding of caregiver stress that is invariably exacerbated when a family member is placed in a long-term care facility.

The benefits associated with volunteering among seniors: a critical review and recommendations for future research.

There is an urgent need to identify lifestyle activities that reduce functional decline and dementia associated with population aging. The goals of this article are to review critically the evidence on the benefits associated with formal volunteering among older adults, propose a theoretical model of how volunteering may reduce functional limitations and dementia risk, and offer recommendations for future research. Database searches identified 113 papers on volunteering benefits in older adults, of which 73 were included. Data from descriptive, cross-sectional, and prospective cohort studies, along with 1 randomized controlled trial, most consistently reveal that volunteering is associated with reduced symptoms of depression, better self-reported health, fewer functional limitations, and lower mortality. The extant evidence provides the basis for a model proposing that volunteering increases social, physical, and cognitive activity (to varying degrees depending on characteristics of the volunteer placement) which, through biological and psychological mechanisms, leads to improved functioning; we further propose that these volunteering-related functional improvements should be associated with reduced dementia risk. Recommendations for future research are that studies (a) include more objective measures of psychosocial, physical, and cognitive functioning; (b) integrate qualitative and quantitative methods in prospective study designs; (c) explore further individual differences in the benefits associated with volunteering; (d) include occupational analyses of volunteers' specific jobs in order to identify their social, physical, and cognitive complexity; (e) investigate the independent versus interactive health benefits associated with volunteering relative to engagement in other forms of activity; and (f) examine the relationship between volunteering and dementia risk.

Barriers and facilitators to communicating nursing errors in long-term care settings.

OBJECTIVE: To explore nurses' perceptions about communicating nursing errors. DESIGN: Cross-sectional, descriptive study. PARTICIPANTS: Approximately 289 nurses working in long-term care facilities in Ontario, Canada. METHODS: A cross-sectional, descriptive study of approximately 289 nurses working in long-term care facilities in Ontario, Canada. Solicited nurses' perceptions concerning the disclosure of nursing errors and adverse events by including an open-ended item at the conclusion of a 60-item (multiple choice) questionnaire on the same topic. A qualitative content analysis was conducted using a multi-step process. RESULTS: A total of 245 responses were included in the content analysis. The main categories related to error communication that were derived from the analysis were as follows: (1) differences in the definition of terms; (2) the day-to-day working conditions and their impact on defining and reporting errors; (3) organizational factors that both help and hinder the reporting of errors in ensuring both personal and organizational responsibility; (4) communication styles that both help and hinder disclosure and adherence to proper protocols; and (5) external factors such as policies and professional standards and codes of ethics, which can provide clarity of process; and (6) recommendations for implementation of professional standards in long-term care settings to facilitate supportive working conditions. CONCLUSION: Eliminating the barriers to error communication requires moving toward a culture of safety. This involves both top-down and bottom-up approaches that allow nurses to feel comfortable being active participants in the error communication process.

Managing executive dysfunction following acquired brain injury and stroke using an ecologically valid rehabilitation approach: a study protocol for a randomized, controlled trial.

BACKGROUND: We have been investigating an ecologically valid strategy-training approach to enable adults with executive dysfunction to attain everyday life goals. Here, we report the protocol of a randomized controlled trial of the effects of this training compared to conventional therapy in a sample of community-dwelling adults with acquired brain injury and/or stroke. METHODS/DESIGN: We will recruit 100 community-dwelling survivors at least six months post-acquired brain injury or stroke who report executive dysfunction during a telephone interview, confirmed in pre-training testing. Following pre-training testing, participants will be randomized to the ecologically valid strategy training or conventional therapy and receive two one-hour sessions for eight weeks (maximum of 15 hours of therapy). Post-testing will occur immediately following the training and three months later. The primary outcome is self-reported change in performance on everyday life activities measured using the Canadian Occupational Performance Measure, a standardized, semi-structured interview. Secondary outcomes are objective measurement of performance change from videotapes of treatment session, Performance Quality Rating Scale; executive dysfunction symptoms, Behavioural Rating Inventory of Executive Function - Adult; participation in everyday life, Mayo-Portland Adaptability Inventory Participation Index; and ability to solve novel problems, Instrumental Activities of Daily Living Profile. DISCUSSION: This study is of a novel approach to promoting improvements in attainment of everyday life goals through managing executive dysfunction using an ecologically valid strategy training approach, the Cognitive Orientation to daily Occupational Performance. This study compares the efficacy of this approach with that of conventional therapy. The approach has the potential to be a valuable treatment for people with chronic acquired brain injury and/or stroke. TRIAL REGISTRATION: clinicaltrials.gov, Trial Identification Number: NCT01414348.

Falls communication patterns among nursing staff working in long-term care settings.

Effective fall-risk communication both among staff and between staff and family members is vital for ensuring the safety of residents in long-term care (LTC) settings. This study uses focus group methodology to investigate how information about falls is identified, communicated, and responded to by licensed staff (registered nurses/registered practical nurses) and unlicensed staff (personal support workers) in four LTC facilities. The authors report on the major themes that emerged throughout the focus groups relating to falls management and report on similarities and differences in the communication processes between the two sampled groups. Results highlight communication of the resident's fall risk, reporting procedures to staff and family members, care plan communication and adherence information, a falls quality improvement knowledge deficit, and barriers to falls quality improvement. Recommendations toward improved communication networks among diverse LTC staff to enhance fall-reduction efforts in LTC settings are provided.

The psychosocial impacts of multimedia biographies on persons with cognitive impairments.

PURPOSE: The purpose of this feasibility pilot project was to observe Alzheimer's disease (AD) and mild cognitive impairment (MCI) patients' responses to personalized multimedia biographies (MBs). We developed a procedure for using digital video technology to construct DVD-based MBs of persons with AD or MCI, documented their responses to observing their MBs, and evaluated the psychosocial benefits. METHODS: An interdisciplinary team consisting of multimedia biographers and social workers interviewed 12 family members of persons with AD and MCI and collected archival materials to best capture the families' and patients' life histories. We filmed patients' responses to watching the MBs and conducted follow-up interviews with the families and patients at 3 and 6 months following the initial viewing. Qualitative analytic strategies were used for extracting themes and key issues identified in both the filmed and the interview response data. RESULTS: Analysis of the interview and video data showed how evoked long-term memories stimulated reminiscing, brought mostly joy but occasionally moments of sadness to the persons with cognitive impairments, aided family members in remembering and better understanding their loved ones, and stimulated social interactions with family members and with formal caregivers. IMPLICATION: This study demonstrates the feasibility of using readily available digital video technology to produce MBs that hold special meaning for individuals experiencing AD or MCI and their families.

Clinical practice standards and ethical issues applied to a virtual group intervention for spousal caregivers of people with Alzheimer's.

Advances in technology have improved access to health and social services by offering more abundant and convenient choices for clients. In particular, the use of technology for delivering services to older adults and their families offers new possibilities for service delivery, by reaching people who are often isolated, and have difficulty accessing traditional services. Despite the continued advances in technology development and its integration into healthcare delivery, health care practitioners need to consider how to adapt and uphold clinical practice standards and address ethical issues in an e-health environment. Given the gap in the literature with respect to discussing these issues, this paper illustrates relevant issues in the context of developing and evaluating an Internet-based intervention for spousal caregivers of persons with dementia. Based on a four year project, a psychotherapeutic group intervention was delivered via the Internet to three groups of spousal caregivers. This article identifies some of the key practice standards and ethical issues that arise when using computer technology to deliver a psychotherapeutic group intervention. The article will also provide examples of relevant issues related to maintaining practice standards and ethical procedures that need to be addressed during the application of a computer-based psychotherapeutic group intervention for spousal caregivers of people with dementia.