Support Groups For Family Caregivers Research Articles

2218 Experience of family caregivers for older patients with delirium: a qualitative study

Abstract Background Delirium is associated with psychological and cognitive complications that have impacts beyond the patients. Although family members and carers can play a significant role in the management and recognition of delirium, there is limited research on the experience of family caregivers in the context of delirium. This study aims to explore the needs and experiences of family caregivers for a person with delirium and offer suggestions to support them. Method A qualitative interview study with family caregivers of persons with delirium. Data were analysed using an abductive analysis approach. Results Fourteen family caregivers were interviewed. Carers explained their feeling of responsibility to support their loved ones with delirium, however, they perceived their caregiving role negatively because of increasing demands and the lack of sufficient support. Carers attributed their emotional exhaustion and distress to the onset of delirium, change in the personality of the person with delirium, confusion and progression of delirium. Additionally, carers indicated the negative impact of caregiving on the quality of the relationship between them and person with delirium. This highlights the need to enhance the support provided to carers to mitigate the emotional and relationship impact of caregiving on the carer. We identified the needs of carers for people with delirium including: education on delirium, reassurance, information on care pathways and support from formal carers to take breaks. Conclusions Viable solutions to assist family caregivers include more support for the carer in formulating care plans for people with delirium, the development of support groups for family caregivers of people with delirium, and a case worker. These solutions may help to decrease re-hospitalisation and admission to care homes. Future research should focus on approaches to better support carers of people with delirium, and to shift the care plan from person-centred into person and family-centred approach.

Social Identity and Online Support Groups: A Qualitative Study with Family Caregivers

BackgroundThe purpose of this study was to explore whether a sense of collective or shared group identity was developed in one established online social support group for family caregivers and, if so, what did group identification mean for the group members and how was this cultivated in the group.MethodsEighteen semi-structured interviews were carried out with members of a family caregiver online support group in Ireland. Inductive and deductive reflexive thematic analysis drawing on the social identity approach (SIA) generated four main themes and several related subthemes.ResultsThe first main theme generated was The group are a Tribe and the Tribe gets it, with subthemes: Invisibility as a common experience, my Tribe understands I am more than just a carer and Just being part of the Tribe can be enough. The second main theme generated was the Tribe is a lifeline and life-changing, with related subthemes: Our connection relieves experiences of loneliness and social isolation and Sharing knowledge, experience and support made me feel visible. The third and fourth main themes generated were The leadership of group moderators helped create the Tribe identity and Lessons that can be learnt. These findings are discussed in relation to the social identity approach, social isolation and loneliness.ConclusionsWe concluded that group identity can be cultivated through considered, active and balanced moderation, creating a safe, welcoming and supportive space where family caregivers are able to have fun and seek information, advice and emotional support, which helps relieve loneliness and social isolation.

A comparison of caregiver burden between long-term care and developmental disability family caregivers

As the United States' population ages and health concerns rise, the family caregiver occupation will continue to be an integral part of the health care system. It is important to examine the burden that family caregivers experience so they can seek out additional training and services to maintain their own well-being. The researchers examined caregiver burden from a perspective of developmentally disabled and long-term care. The researchers examined difference in Zarit scores, guilt, burden and personal strain for 72 caregivers of people with developmental disability (DD) or people with long-term care (LTC) needs. The researchers also examined differences in these based on whether the individual was caregiving for family or "others". For DD, there were significant differences in Zarit, role strain and personal strain; caring for others has significantly lower scores on these. Role strain was significantly higher than personal strain, which was significantly higher than guilt for both LTC and DD groups. Given these findings, it is important to support family caregivers first and foremost with role strain, especially for those caring for family members with DD. This support could be given through personal counselling, caregiver training, non-profit social service resources, and support groups for family caregivers.

Support groups for family caregivers of persons with dementia in India.

A caregiver support group was initiated at the Schizophrenia Research Foundation, Chennai, India. The study aimed to evaluate this service for 100 caregivers of persons with dementia, identify the needs met and explore the facilitating factors and barriers for participation. The support group met the information, emotional and counselling needs of caregivers. Trust between members was a key facilitating factor. Lack of help at home to support the person with dementia, distance from the venue and work commitments were barriers to caregiver participation. The study found that support groups fulfil an important need for caregivers by providing information and peer support.

Factors influencing engagement in an online support group for family caregivers of individuals with advanced cancer

Objective: To explore factors that influenced engagement in an online support group (OSG) for family caregivers of hospice patients with cancer.Design: Secondary qualitative data analysis.Sample: 58 family caregivers of hospice patients with advanced cancer.Methods: Template analysis of individual family caregiver interviews.Findings: Emotional isolation and caregiving downtime positively influenced engagement, while reluctance to share personal information, a short timeframe of participation in the OSG, and caregiving commitments were negatively influential. While the group facilitation and secure privacy settings of the OSG were viewed positively, reactions to the OSG platform and group tone were mixed. Information on pain and the dying process was found to be particularly engaging.Practice implications: Providers offering OSGs for family caregivers should maximize factors that promote meaningful member engagement, responding to changes in activity and tone over time.

Dementia-friendly community indicators from the perspectives of people living with dementia and dementia-family caregivers.

To identify dementia-friendly communities' indicators and their current conditions in Taiwan from the perspectives of people with dementia and dementia-family caregivers. This qualitative study explored the opinions and experiences of people with dementia and dementia-family caregivers regarding dementia-friendly communities. Participants (16 people with dementia and 20 family caregivers) were recruited from neurological clinics, day care centres for people with dementia and support groups for family caregivers in the Taipei community from July - October, 2016. Data were collected in face-to-face interviews, which were tape recorded and transcribed verbatim. Transcripts were analysed by Miles and Huberman's (1994) guidelines. Similar indicators for dementia-friendly communities were identified in Taiwan as in other countries, including dementia-friendly care services, dementia-friendly hospitals, dementia-friendly community environment, dementia-friendly transportation, dementia-friendly stores and shops, dementia friendly people, integrated dementia-related information and community contribution- and -involvement opportunities for people with dementia. However, Taiwanese people with dementia and family caregivers described no emphasis on the potential of people with dementia to contribute to developing dementia-friendly communities and more top-down expectations for the government's role. These indicators can be a guide for developing and evaluating dementia-friendly communities in Taiwan. Differences between Taiwan and Western developed countries in indicators for dementia-friendly communities can be further explored. Community nursing assessment, interventions, and evaluation based on these dementia-friendly communities indicators can be further developed. This study developed indicators for dementia-friendly communities in an Asian country. These indicators can be used as a guide for developing and evaluating dementia-friendly communities.

Online peer support groups for family caregivers: are they reaching the caregivers with the greatest needs?

Online peer support groups are an increasingly common venue for caregivers supporting disabled family members to exchange informational, emotional, and instrumental support. We know very little, however, about who uses these groups and whether they are reaching those with the greatest needs. To examine whether caregiving factors (ie, caregiving demands and strain, competing demands, access to support and services, and other caregiving characteristics) are related to online community support use and intensity of use. This study used data from a new survey of family caregivers who provide care to disabled military veterans. We used logistic regression models to examine the likelihood of online community support group usage and intensity of use as a function of a variety of caregiving factors. Those with greater caregiving demands were more likely to use online peer support. Specifically, helping the care recipient with more activities was associated with a statistically significantly greater likelihood of visiting an online community support group. Caring for a veteran with a neurological or psychological condition, which, in prior work, suggests more complex care needs, was also positively and significantly related to visiting an online community support group. Hours of care and several other caregiving factors were related to intensity of use. We show that family caregivers with the most caregiving demands are most engaged with online support communities. This suggests that online communities could be used to support the most vulnerable family caregivers. The implications of this work for online support systems are discussed.

Mutual support groups for family caregivers of people with amyotrophic lateral sclerosis in Italy: A pilot study.

Family caregivers of people with amyotrophic lateral sclerosis (ALS) live stressful lives in which they spend most of their time caring for their loved ones and managing difficult situations, thereby reducing the time spent in taking care of themselves. This situation may last several years. Previous literature has widely highlighted that this situation reduces caregivers' quality of life and increases their psychological distress and risk of health problems, but there is a lack of studies that focus on psychological interventions for these situations. This qualitative study examined a pilot experience of two mutual support groups for family caregivers of people with ALS. The aim was to identify caregivers' needs, the prominent aspects of their experience, and to understand whether and how this intervention strategy might help them. Six partners (four men and two women) and six adult children (five women and one man) participated in the groups, which were conducted in northern Italy. After the support groups finished, participants underwent semi-structured interviews. The authors conducted a content analysis of the transcripts of the interviews and the 20 group sessions. The thematic areas identified were "caregiving," "being the son/daughter of a person with ALS," "being the partner of a person with ALS," "group experience" and "group evaluation." The caregiving experience was profoundly different depending on whether the caregiver was a son/daughter or a partner of a patient with ALS. Moreover, comparison with peers and mutual support helped participants to better cope with ALS and its consequences, to improve their care for their relatives and to overcome typical caregiver isolation. These results suggest the usefulness of involving communities in caregiver support in order to create new networks and activate personal and social resources for well-being.

"Anonymous Meltdown": Content Themes Emerging in a Nonfacilitated, Peer-only, Unstructured, Asynchronous Online Support Group for Family Caregivers.

By providing care for loved ones in the home, family caregivers save millions of dollars for our overtaxed healthcare system. Support groups can lighten the psychological burden of caregiving. Nonprofessionally facilitated (or peer) online caregiver support groups can help meet a critical need in healthcare as a low-cost resource for caregivers. Online caregiver peer support groups can promote the health and well-being of family caregivers and, by extension, the patients themselves, resulting in cost-savings for society. A better understanding of these types of groups is of critical importance, given the unrelenting pace of demographic shift in the United States. The purpose of this study was to examine content themes emerging from an unstructured, asynchronous online peer support group for family caregivers of people with chronic illness. Qualitative content analysis was used, yielding six themes: "experiencing the emotional toll," "need for catharsis/venting," "finding the silver linings," "seeking specific advice/problem solving," "realizing home is no longer a haven," and "adapting to the caregiver role." The themes reflect what emerged organically in an online support group that was not professionally facilitated or structured in any way. Heterogeneity in the relationship between caregivers and care recipients may negatively affect outcomes and requires further study.

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

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. 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. The content analysis reported group process themes, therapeutic interventions used, caregiver outcomes, and the challenges for clinicians delivering a therapeutic intervention online. 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.

Use of a multiparty web based videoconference support group for family caregivers: Innovative practice.

This article describes a pilot of a weekly web based videoconference support group for five caregivers of persons with dementia. All participants reported positive views of the group and videoconference medium. Improvements in caregiver anxiety, depression, and physical health scores were observed. Depression scores remained the same with difficulties experienced by the caregiver increasing slightly. Self-efficacy for controlling upsetting thoughts and responding to disruptive behavior improved but worsened slightly for obtaining respite. We concluded that web based support was a positive experience for caregivers, providing them with an acceptable, feasible, low-cost technological alternative to in person support that reduced barriers to attendance by being available in homes.

The Value of Peer-Led Support Groups Among Caregivers of Persons With Parkinson's Disease

Many persons with Parkinson's disease are cared for by family members. The strain of caregiving can negatively affect the health of the caregiver and affect long-term care decisions, making caregiver support a priority. This study highlights the importance of peer-led support groups for family caregivers of persons with Parkinson's disease.

Emergence of Yalom's Therapeutic Factors in a Peer-Led, Asynchronous, Online Support Group for Family Caregivers

Support groups fill a critical void in the health care system, harnessing the power of shared experiences to provide support to group members. Likewise, family caregivers fill a void in the health care system, providing billions in unpaid care to the chronically ill. Caregiver support groups offer an opportunity for alleviating the psychological burden of caregiving. The power of any group, including a support group, to foster psychological well-being lies in its ability to cultivate Yalom's therapeutic factors. Gaps in the literature remain regarding the ability of non-prototypical groups to promote therapeutic mechanisms of change. The purpose of this study was to determine if and when Yalom's therapeutic group factors emerged in a peer-led support group delivered in an asynchronous, online format. Qualitative content analysis utilizing deductive category application was employed. Participants’ responses were coded and frequency counts were conducted. Results revealed that 9 of 11 therapeutic factors emerged over the course of the group, with Group Cohesiveness, Catharsis, Imparting of Information, and Universality occurring most often. Several factors, including Interpersonal Learning, Corrective Recapitulation of the Primary Family Group, Imitative Behavior, and Development of Socializing Techniques were absent or virtually absent, likely due to the peer-led format of the group. Progression of therapeutic factors over the course of the group is presented. Findings demonstrate the presence of a variety of Yalom's therapeutic factors in an asynchronous, peer-led online support group.

An experimental study on the effectiveness of a mutual support group for family caregivers of a relative with dementia in mainland China

When caring for an older relative with dementia, family members experience considerable distress and burden. Literature reviews show that supportive group interventions for these caregivers have significant positive effects on improving their distress and quality of life, but not consistent and conclusive. Limited research is found in Asian populations. This study tested the effectiveness of a 12-session bi-weekly mutual support group program for Chinese family caregivers of a relative with dementia in Hong Kong, when compared with standard family support service. An experimental study with pre- and post-test, parallel groups design was conducted. A randomized sample of 78 family caregivers, 39 in each of the experimental and control groups, from one regional dementia care center participated in the study. A protocol was specifically designed by an advanced practice nurse to guide the mutual support group process and the facilitator and peer leader training, based on evidence from the literature on family support group intervention in Western countries. The results of ANOVA tests indicated that the mutual support group participants had significantly greater improvements in distress levels and quality of life than the control group. There were only mild changes in the demands for mental health services in both groups at post-test. These findings support the effectiveness of mutual support groups to offer psychosocial support to Chinese family caregivers in dementia care beyond routine community mental health care.

Grupo de apoio a cuidadores familiares de idosos: uma experiência bem sucedida

This study aims at reporting the experience of implementing a support group for family caregivers of elderly with mental disorders in an outpatient psychogeriatric. This group was drawn from the difficulties of caregivers to care for the elderly (physical activity, sleep and rest, communication, feeding, hygiene and oral hygiene) and included topics that could improve quality of life of caregivers and facilitate to care for the elderly. At each meeting the topic was addressed with the help of audiovisual materials and subsequent delivery of a leaflet containing a summary of the content discussed. During the presentations and discussions were promoted practical activities carried out in accordance with the theme. The activities were assessed by caregivers as of significant importance to their daily lives. Therefore this group can be an example of a strategy to equip family caregivers of seniors on information and techniques necessary to care for the elderly with Alzheimer's and depression.

The dilemma of diabetic patients living with hypoglycaemia

To examine the impact of the threat of hypoglycaemic episodes on people with diabetes in Taiwan. Intensive diabetes treatment in people with diabetes helps them to achieve better glycaemic control. However, it also causes more frequent hypoglycaemic episodes and has an impact on their overall quality of life. Hypoglycaemia is accompanied by various distressing symptoms which may cause excessive fear, affecting decision making in hypoglycaemic management. Purposive sampling and in-depth, face-to-face interviews were used to collect data. Semi-structured interviews were conducted from July 2008-January 2009 with 17 individuals treated with insulin who had previous hypoglycaemic episodes. Data were analysed using qualitative content analysis. Four themes were generated from the analysis, 'inability to control fluctuations in health', 'challenges to interpersonal relationships', 'facing the disease alone' and 'finding a balance between competing symptoms'. Hypoglycaemia is a major health issue for many people with diabetes. Understanding individuals' experiences with hypoglycaemic episodes should help practitioners become more fully involved in promoting self-management. We identified key areas that health care providers should address, including concerns about patient education and professional support for people with diabetes experiencing hypoglycaemia, to enhance problem solving skills for them and their families. We recommend that health care providers make proper use of support groups for family caregivers or other important individuals in the lives of people with diabetes to provide education, clarification, support and guidance. In addition, health care providers also need to provide clients with hypoglycaemia-related emotional support, while enhancing diabetes self-management and problem-solving skills.

Treating Difficult Cases in a Psychoeducational Family Support Group for Serious Mental Illness

Research findings on family psychoeducation as evidence-based treatment for serious mental illnesses and benefits for families of peer-led family education groups are presented. Because major psychiatric disorders frequently are long term with episodic crises, caregivers have ongoing needs for support to enhance time-limited interventions. This article describes a continuous psychoeducational family support group that gives prolonged assistance and also helps problem families who reject family therapy. Three case examples are given of such families and the contributions of the group in effecting change. It is suggested that mental health systems incorporate psychoeducational support groups for family caregivers in standard practice.

Caring for the Family Caregiver: A Spiritual Journey

Family caregivers are sometimes overlooked by programs that provide care for persons suffering from dementia. Family care providers experience a significant amount of physical and emotional stress. In addition, they often suffer spiritual stress as well. The need for spiritual support services is presented in this chapter. Guidelines for the development of support groups for family caregivers are presented as well.

Developing Evidence for an Internet-Based Psychotherapeutic Group Intervention

This paper describes the stages of collecting evidence for the effectiveness of a psychotherapeutic support group for family care-givers of persons with neuro-degenerative diseases. The goal was to duplicate on-line, the professional practice standards and client outcomes that apply when evaluating face-to-face support groups for family care-givers. Pilot studies of three caregiver groups generated data for the development of an intervention training manual, a user-friendly web site, and a computer training manual. Subsequently an Internet-based version of the group intervention was evaluated in a feasibility study with six groups of caregivers. This consisted of 10 on-line, professionally facilitated group sessions. In terms of technology, a user-friendly Web site that included video conferencing support for group member communication was developed and evaluated. Analyses of early, middle and late group video conferencing sessions supported fidelity of the on-line intervention and yielded themes congruent with face-to-face group process. Follow-up interviews six months following the initiation of the on-line groups showed overall positive participant responses in each of the following areas: using technology to communicate, bonding and providing mutual guidance and support, and benefiting in terms of coping with the stresses of caregiving.

Virtual support groups for family caregivers of persons with dementia

Virtual Support Groups for Family Caregivers of Persons with Dementia Elsa Marziali, PhD, Professor and Schipper Chair, Gerontological Social Work Research, University of Toronto and Baycrest Centre for Geriatric Care,Toronto, ON. TECHNOLOGY IN MEDICINE Introduction Family caregivers, largely women, provide the health and social care for dependent family members who have long-term chronic illnesses. Family caregiving can span many years depending on the stage of illness progression and the family’s resources for managing the needs of the care recipient. Caregiver stress and negative health outcomes are common. Intervention programs for family caregivers typically focus on a) support and/or educational groups; b) individual psychotherapy; c) interventions focused on the care recipient such as respite care; or d) combinations of two or more of these approaches. Most models of intervention produce small-tomoderate improvements in caregiver stress, depressive mood, subjective wellbeing, and coping ability.1–3 Intervention programs are delivered face-to-face in either group or individual formats and are either clinic based or provided in the home of the caregiver or care recipient. Providing similar services using technology such as the Internet presents significant challenges. E-Health Programs for Family Caregivers Technology has been used in the past to enhance intervention strategies with family caregivers of persons with dementia. ComputerLink is an Internet-based support network including a public bulletin board, private e-mail, and a text-based question-and-answer forum facilitated by nurses.4,5 The participants benefit in the short term but participation lags in the long term. REACH (Resources for Enhancing Alzheimer ’s Caregiver Health),6 a comprehensive multisite research program, evaluated the benefits of interventions designed to enhance family caregiving for Alzheimer’s disease and related dementias. In addition to faceto-face support services, two of six participating sites used digital telephone systems to enhance the delivery of information and consultation to caregivers. The Internet was not used for service delivery in any of the REACH programs. Overall, the intervention programs showed benefits to caregivers in terms of reduced stress and higher skill acquisition. Virtual Support Groups Our intervention program for dementia caregivers was developed through a series of pilot studies and subsequently evaluated in a feasibility study implemented in two remote areas: Timmins, Ontario and Lethbridge, Alberta. For the pilot studies, three groups of six spousal caregivers agreed to participate with informed signed consent. The groups were facilitated by two experienced social workers, initially in face-toface format and subsequently via Internet-based video conferencing. The overall aim of the intervention was to decrease the amount of stress experienced by the caregivers as well as enhance their knowledge and skills in managing the care of the dependent relative. The professional facilitators provided the intervention online for 10 sessions, and continual feedback was solicited from the participants regarding both the technical and clinical aspects of the program. The pilot studies yielded several modules. The first was an easy-to-use, An internet-based psychotherapeutic support group for family caregivers of persons with dementia was developed in a series of pilot studies and evaluated in a feasibility study with 34 participants. A user-friendly website was developed that included video conferencing in two formats: group and one-on-one. Following 10 professionally facilitated sessions, each group evolved into a web-based selfhelp support group. Six-month follow-up interviews showed overall positive participant responses with regard to learning to use computers, negotiating the website, providing mutual guidance and support, and improving management of caregiver