Carer Support Groups Research Articles

Experience of carers for older people with delirium: a qualitative study

Objectives There is a gap in our understanding of the experiences and needs of carers for patients with delirium and a scarcity of research on the topic in the UK. This study aims to explore the needs and experiences of carers for person with delirium and offer suggestions to support them. Method A qualitative interview study with carers of patients with delirium. Data were analysed using an abductive analysis approach. Results Fourteen carers were interviewed. We identified four themes; carers’ involvement in providing care for the person with delirium, carers’ perspectives of caregiving, support for carers and impact for caregiving on carers. Carers felt a responsibility to support the patient and to obtain information on delirium and its management on their own. Caregiving for a person with delirium had an emotional impact on the carer and they needed to change their lifestyle to maintain their caregiving responsibilities, as a result of the limited support they had. Conclusion More support for the carer in care plans with focus on emotional support, support groups for carers of people with delirium and assigning a case worker should be taken into consideration when developing interventions for people with delirium at home. These solutions may mitigate the impact of caregiving role on the mental and physical wellbeing of the carer for older person with delirium.

The effects of a facilitator-enabled online multicomponent iSupport for dementia programme: A multicentre randomised controlled trial

BackgroundMulticomponent interventions with carers of people with dementia demonstrate positive effects on the health and quality of life for carers and care recipients. The World Health Organization's iSupport for Dementia is an evidence-based online psychoeducation programme for carers. However, the programme was mainly implemented as a self-learning tool which might have limited its positive effects on carers and care recipients. Evidence for online multicomponent interventions with carers that incorporates the iSupport programme remains unknown. ObjectivesThis study aimed to partner with health and social care organisations to evaluate the effects of a facilitator-enabled online multicomponent Chinese iSupport programme, which included psychoeducation using the iSupport programme, facilitator-enabled carer support groups and access to care services. DesignA multicentre randomised controlled trial. Settings and participantsParticipants were family carers in Australia and greater China. We recruited participants to the study from 1st November 2021 to 30th June 2022. MethodsThe intervention group received the Chinese iSupport programme delivered online. The intervention lasted for 6 months. Our primary outcome was carers' quality of life. Our secondary outcomes were carers' self-efficacy, social support, distress reactions to changed behaviours, care recipients' frequency of changed behaviours, quality of life, unplanned hospital admissions, emergency department presentations and permanent admissions to nursing homes. The outcomes were measured at baseline (T0), 6 months (T1) and 9 months (T2). We applied a multivariate mixed effect linear regression model to capture the group effect, time effect and their interaction. ResultsIn total, 266 eligible family carers agreed to participate and were randomly assigned to an intervention group (n = 131) or a usual care group (n = 135). Most carers were women with a mean age of 53 years. The intervention group showed a statistically significant higher score of mental-health-related quality of life (mean difference = 4.1, 95 % CI: 1.5, 6.8, p = 0.002), self-efficacy in controlling upsetting thoughts (mean difference = 7.1, 95 % CI: 2.2, 12.0, p = 0.005) and lower score of distress reactions to changed behaviours (mean difference = −0.1, 95 % CI: −0.3, −0.03, p = 0.012) than the usual care group at T1. ConclusionThe facilitator-enabled online multicomponent Chinese iSupport programme demonstrated positive effects for carers on mental health-related quality of life, controlling upsetting thoughts and distress reactions to changed behaviours of people with dementia. Trial registrationThis study is registered in the Australia New Zealand Clinical Trials Registry on 12th March 2021 (ACTRN12621000276853). Tweetable abstractThe facilitator-enabled online multicomponent Chinese iSupport programme improved family carers' mental health-related quality of life, control of upsetting thoughts and distress reactions to changed behaviours of people with dementia.

Support group for carers as an example of helping family members of people with dementia

Support group for carers as an example of helping family members of people with dementia

AHP P05 Attendee perceptions of a support group for patients and carers following Oesophageal or Gastric resection

Abstract Background The benefits of patient support groups are widely recognised, playing a vital role in cancer survivorship. Patients undergoing Oesophageal or gastric resection for cancer are presented with an array of unique post operative and life altering symptoms. Patients and carers alike can be profoundly affected as they live with their cancer diagnosis and the impact of the substantial surgery. The ‘Little and Often’ support group was established 16 years ago to support patients and carers in this regard, meetings are held monthly at a hospital site venue and combine informal conversation with Health care professional speakers.as requested by attendees. Methods A survey was conducted at the ‘Little and Often’ support group amongst attendees, patients and carers alike (n=17). The survey was a combination of open questions and rating scales and was submitted anonymously. Patients and carers were also asked to describe their feelings prior to attending the support group, and to describe how they felt after attending the support group to see if attendance had a bearing. The results were collated and reflected upon to inform the format of future support group meetings. Results The results tell us that most patients and carers find the ‘Little and Often’ support group valuable to their cancer journey and survivorship. Many affirmative aspects were identified that had a positive impact on patient experience, and 82% attendees stated there was nothing they did not like about the group. 100% attendees liked having a Health care professional present and accessible at the group. 100% of attendees either strongly agreed or agreed that the group had made an important difference in their life in a safe space that left them with hope for the future. Conclusions This survey reinforces the perceived benefits of patients and their carers attending the Little and Often support group. The format of having a health care professional speak alongside informal conversation was welcomed by the attendees. The group facilitates a patients transition from feeling alone and isolated at times to feeling hopeful, supported, and positive about the future. It would be prudent to repeat this survey on a larger cohort of patient across a longer time scale, a validated quality of life assessment tool can be utilised to monitor the impact of the Little and Often group on patients and carers.

288 Carers in transition: a support group for dementia carers whose spouse is transitioning to Long Term Care

Abstract Background In Ireland, an estimated 32% of people with dementia (PwD) are about to move to Long-Term Care (LTC). For spousal dementia carers, the transition to LTC is their greatest period of grief. Spousal dementia carers deal with changes in their relationship, identity, and role, when their spouse prepares to enter LTC. The Carers’ Transition Group (CTG) supports spousal carers in processing grief, educates about dementia and what to expect as their caring role evolves, signposts to resources, and supports improvement of overall well-being. The group is comprised of spousal carers of PwD who are currently patients of a Mental Health Service for Older Persons, transitioning to LTC. Methods Feedback on the Group was obtained via participant questionnaires and an assessment tool based on the Carer Support Needs Assessment Tool (CSNAT) administered pre-and-post, to ensure both the sessions and associated tools accurately reflected members identified needs. Results Group member feedback was very positive in regard to session content, group size and structure, and facilitator communication. Several participants expressed that simply hearing that others had experiences similar to their own as comforting. Conclusion The CTG highlights the need for research and development of psychosocial and psychoeducational interventions that provide support throughout the caring journey. Findings indicate an overall positive experience, with respondents expressing that sharing emotions and experiences, and feeling understood as the most beneficial element.

The primary care experience of adults with chronic obstructive pulmonary disease (COPD). An interpretative phenomenological inquiry.

Studies of the lived experience of chronic obstructive pulmonary disease (COPD) reveal a number of challenges patients face when interacting with healthcare providers that may be exacerbated by unwillingness or inability to quit smoking. However, none have explored, in-depth, primary care experiences among patients with COPD in community healthcare settings. The study investigated healthcare experiences of patients living independently in the community with COPD who smoked or had recently quit (at most within the last 5 years), seeking care in primary care settings. An Interpretative Phenomenological Analysis (IPA) involving thirteen participants purposively recruited from social media posts in COPD and carer support groups, general community groups, community noticeboards and paid adverts on social media. In-depth interviews were held between February and April 2022 by phone or Zoom™ and explored patient experience of primary care, focusing on how smoking patterns, addiction and stigma impact upon and shape these experiences. Participants were aged between 45 to 75 years. Nine were female and two thirds were current smokers. Problematic experiences including time-constrained consultations, having to self-advocate for care "…go digging myself and then go and see him and say, can we do this, can we do that type of thing?" and guilt about smoking were common. Positive care experiences described non-judgemental interpersonal interactions with doctors, timely referral, proactive care and trust "I have an actual great trust for my GP… they're awesome, they'll look after you". Participants described how their care experience shifted as primary care adapted care delivery during COVID-19. Pro-active, empathetic care from general practitioners is desired from patients living with COPD. Stigma and fear of judgement was an important underlying driver of negative care experiences contributing to delayed help seeking from general practitioners.

‘The oxygen of shared experience’: exploring social support processes within peer support groups for carers of people with non-memory-led and inherited dementias

Objectives To explore support processes and behaviours taking place during online peer support groups for family carers of people living with rare, non-memory-led and inherited dementias (PLWRD). Methods Twenty-five family carers of PLWRD participated in a series of ongoing online peer support groups on the theme of ‘Independence and Identity’. Transcripts from 16 sessions were analysed using qualitative directed content analysis with a coding framework informed by Cutrona & Suhr’s (2004) Social Support Behaviour Code (SSBC). Results Most of the social support behaviours outlined in the SSBC were identified within the sessions, along with two novel social support categories – ‘Experiential Support’ and ‘Community Support’ – and novel support behaviours including ‘Advocacy and Collective Action’ and ‘Uses Humour’. The SSBC code ‘Relationship’ appeared to be of central importance. Conclusions This study sheds light on the unique challenges of the caring context for those affected by non-memory-led and inherited dementias and the significant contributions carers can offer to, and receive from, peers in similar situations. It highlights the importance of services which recognise the value of the informational and emotional expertise of carers of PLWRD and encourages the continued development and delivery of tailored support for these populations.

Online support groups for carers of people living with dementia: An investigation of videoconferencing support groups in lockdown.

This study aimed to explore the experiences of carers of people living with dementia who participated in videoconferencing support groups during the COVID-19 pandemic to investigate their preferences and experiences with online, hybrid, and face-to-face support. This convergent mixed methods design study utilised an online questionnaire and semi-structured interviews. Interviews took place over videoconferencing software and were analysed through thematic analysis. Participants were recruited from support groups based in the UK and Ireland. 39 carers of people living with dementia completed the questionnaire and 16 carers participated in interviews. Participants found videoconferencing support groups more convenient, but face-to-face groups more enjoyable. Participants who had found it difficult to access face-to-face groups prior to COVID-19 expressed more positive perceptions of videoconference-based groups. Many felt that hybrid groups would make it easier for more people to attend. However, some carers described lacking the resources and technological skills to participate in online support groups effectively. Some suggested making IT training available may improve the capacity of carers to access support online. Videoconferencing support groups can be an appropriate way of supporting carers of people with dementia, especially for those who do not have access to face-to-face support groups. However, face-to-face support remains important to carers and should be made available when it can be implemented safely. Hybrid support groups could allow for increased accessibility while still providing the option of face-to-face contact for those who prefer it or are not adept with technology.

Creating ‘Partnership in iSupport program’ to optimise family carers’ impact on dementia care: a randomised controlled trial protocol

BackgroundThe majority of people with dementia are cared for by their family members. However, family carers are often unprepared for their caring roles, receiving less education and support compared with professional carers. The consequences are their reduced mental and physical health and wellbeing, and that of care recipients. This study protocol introduces the ‘Partnership in iSupport program’ that includes five interventional components: managing transitions, managing dementia progression, psychoeducation, carer support group and feedback on services. This health services research is built on family carer and dementia care service provider partnerships. The aims of the study are to evaluate the effectiveness, cost-effectiveness and family carers’ experiences in the program.MethodsA multicentre randomised controlled trial will be conducted with family carers of people living with dementia from two tertiary hospitals and two community aged care providers across three Australian states. The estimated sample size is 185 family carers. They will be randomly assigned to either the intervention group or the usual care group. Outcomes are measurable improvements in quality of life for carers and people with dementia, caregiving self-efficacy, social support, dementia related symptoms, and health service use for carers and their care recipients. Data will be collected at three time points: baseline, 6 months and 12 months post-initiation of the intervention.DiscussionThis is the first large randomised controlled trial of a complex intervention on health and social care services with carers of people living with dementia in real-world practice across hospital and community aged care settings in three Australian states to ascertain the effectiveness, cost-effectiveness and carers’ experiences of the innovative program. We expect that this study will address gaps in supporting dementia carers in health and social care systems while generating new knowledge of the mechanisms of change in the systems. Findings will strengthen proactive health management for both people living with dementia and their carers by embedding, scaling up and sustaining the ‘Partnership in iSupport program’ in the health and social care systems.Trial registrationThe Australian New Zealand Clinical Trials Registry (ANZCTR). ACTRN12622000199718. Registered February 4th, 2022.

Life is a rollercoaster: an exploration of a support group for parents and carers of those with children and young people with mental health difficulties

Abstract NHS Digital reported that one in eight children aged 5 to 19-year-old in England were identified with a mental illness, the most prevalent being emotional disorders. A diagnosis of a mental illness has a clear impact on children or young people and can also impact the health and wellbeing of family members, in particular parents and carers. We will share and discuss findings from a co-produced evaluation of a nationally recognized support group, Rollercoaster, a well-established and popular parent support group in the UK, for carers of children and young people with mental health difficulties. We will illustrate “what works” in setting up and running a support group for parents in the UK and more widely. The audience will learn what matters to the parents and carers regarding support and in terms of offering support, and how to effectively run a successful support group. Specifically, the evaluation focused on what principles could be drawn from Rollercoaster, given the wide gap in local services offering targeted support for carers. We therefore created a framework to aid in the development of other, unique support groups designed to meet the needs of their local populations. We carried out a parent/carer survey; interviews with parents/carers, support group workers and wider stakeholders; and observations of support group activities. Applying a “lesson drawing” method, we grouped what participants said around the following areas: 1) specific activities offered by Rollercoaster; 2) people who set up and run a parent/carer support group; 3) how to make a parent/carer support group successful. Engaging a wide range of parents/carers and stakeholders at every stage in the design of activities was seen as paramount. A range of skills are required by different people at various points in setting up and running the group. Success rests on constantly adapting to internal and external developments and having a bedrock of being parent led and professionally supported.

NP-113: Developing a national information and support group program for the carers of people living with myeloma

<h3>Introduction</h3> Myeloma Australia's support services have always been available to carers of people living with myeloma. However, we recognised a need to offer a space just for carers to help them cope with the unique issues of a complex disease, treatment side effects, supportive care needs and the impact of each relapse on their loved one. The aim of this project was to understand the needs of carers in the Australian myeloma community to guide development of an appropriate carer-specific national information and support group program. <h3>Methods</h3> A 14-question survey was emailed to the Myeloma Australia national database to gauge carer interest, priorities and needs. Four pilot information and support groups were held online in two Australian states over a two month period. Each group was facilitated by two myeloma support nurses. Attendees and facilitators evaluated sessions according to content, time of day and length of meeting. Data collection from the survey, feedback from pilot group attendees and a literature review were interpreted using thematic analysis to guide the program development. <h3>Results</h3> 144 survey responses were received in which 70% expressed interest in attending an information and support group. 17 carers and 6 facilitators evaluated the four pilot online information and support groups. Carers identified feelings of loneliness, helplessness, worry and exhaustion in the survey. Themes emergent from carer engagement in the study and review of local and international literature included priorities of gaining knowledge, developing coping strategies and the desire to share with others in a similar situation. <h3>Conclusion</h3> There are significant, unmet needs for carers of myeloma patients. Myeloma Australia has now launched carer information and support groups in all states. Future directions include development of resources for carers of people living with myeloma in Australia and collaboration with external organisations to expand national carer service provision.

‘You’ve Got No Support’: The Experiences of Older Male Caregivers When Their Partner Enters Residential Care

ABSTRACT This qualitative phenomenological study explored the experiences and needs of eight older male caregivers after their partner entered full-time residential aged care within the past 36 months. Semi-structured interviews were conducted, thematically analyzed, and member-checked for accuracy. This transition was a time of significant turmoil for caregivers. Feelings of grief, loss, guilt, and regret were experienced, intertwined with feelings of relief and reassurance that their partner would be well cared for within the care facility. Following the transition, caregivers also began thinking about building a new life. Helpful supports identified were friends and family, carer support groups, counseling services, and community support organizations. Participants described a need for further emotional support, assistance in understanding their partner’s prognosis, and information about the expenses involved in entering residential care. It was suggested there is also a role for professional advisors or peer mentors to support male caregivers through this transition. Tailoring programs and services with consideration of the needs and experiences of older male caregivers will ensure that policies and programs are more supportive and responsive.

Pilot investigation into the need and feasibility of a psychoeducation and support group for male caregivers of those with Huntington's disease.

The psychosocial sequelae of caregiving in Huntington's disease (HD) have been shown to be extensive, even in comparison with other progressive neurological disorders. Based on observed clinical need, this investigation aimed to identify psychoeducational and emotional support needs of male HD caregivers and to explore the feasibility and utility of a carer support group. Six male caregivers completed quantitative measures assessing depression, anxiety, carer burden, and carer support needs. The men participated in two education and support group sessions, four weeks apart, which were developed with consideration of male support preferences. Qualitative themes arising in these sessions were documented. Questionnaire results showed overall low levels of psychological distress and carer burden. Despite this, the group sessions facilitated disclosure of significant emotional, practical, and relationship challenges arising from HD. Further, a range of psychoeducational and emotional support needs were identified on quantitative and qualitative assessments. Participants strongly endorsed the format of the group and the benefits of participation, highlighting in particular the importance of meeting other men who understood the experience of living with a spouse with HD.

Ocena zachowań związanych z zaburzeniami odżywiania w grupie u osób chorych na mózgowe porażenie dziecięce

Introduction: Cerebral palsy (CP) is a group of symptoms that describes a variety of movement or posture disorders that result from permanent but non-progressive brain damage early in a child’s development. They have a direct impact on the patient’s quality of life and relationships in his close surroundings. Very often CP is accompanied by dysphagia and neophobia, where the former is a typical physical disorder resulting from difficulties in swallowing food, and the latter, depending on factors, may be a psychological nutritional barrier, due to the patient’s fear of eating unknown foods. In the group of eating disorders occurring in people with CP, anorexia and bulimia are usually overlooked. The aim of the study is to assess eating disorders in people with CP not mentally retarded and the impact of the environment on their occurrence, as well as to compare the frequency with the general population. Material and methods: The study uses the method of a diagnostic survey and a self-authored questionnaire. The research tool is a questionnaire consisting of 27 questions addressed to parents of children with CP whose intellectual development was normal. Parents of children suffering from CP were examined and their psychosocial development was not abnormal. The study group consisted of 50 people aged 18–50, participation in the study was voluntary and anonymous. The research group consists of people associated in a support group for parents and carers of people with CP. Results: Children suffering from CP very often suffer from eating disorders. There are many types of eating disorders that children with CP suffer from. The most common disturbing eating behavior was fear of eating food (42%), obsessive thoughts about eating (90%), difficulty in swallowing food (86%), perfect knowledge of the caloric content of food products (76%), lack of control over the amount of food consumed (38%), the use of restrictive diets (32%), weight change (24%), vomiting (18%) and reluctance to eat (14%). Conclusions: Directing attention only to the negative aspects of family relationships in people with CP is definitely insufficient. In the prevention of anorexia or bulimia in this group of patients, the need to stimulate and strengthen such forms of behavior of patients and adult caregivers towards children with CP should be taken into account. It is necessary to conduct further research on the coexistence of anorexia and bulimia in people with cerebral palsy.

Developing a support group for carers of people living with dementia.

Significant numbers of people in the UK care for someone living with dementia. Providing support for carers is socially and economically important, enabling them to continue in their caring role and improving their day-to-day experience of caring. This article comprises a reflection by one dementia nurse specialist who ran a six-week educational support group for carers of people living with dementia. It describes the development of the group and the challenges faced, as well as discussing the future of the group, including the need to ensure its sustainability through collaborative working. The article also details some of the positive outcomes described by carers who attended the group.

‘Child's time’: Kinship carers' use of time reference to construct parental identities

Disputes about parenting, including investments of time, can arise when families break apart. One such context is that of kinship care, where relatives (typically grandparents or siblings) take over parenting responsibilities for a child. However, little is known about the discursive processes by which ‘good’ and ‘bad’ parental identities are constructed. From a corpus of video–recordings of kinship carer support groups, we examine how time references feature in carers' complaints about birth parents. Using Conversation Analysis, we identify two forms of reference: (i) reference to “child's time”, a shared cultural device concerning children's experience, and (ii) juxtaposing reported events on a timeline to infer consequentiality, thus attributing unparental motives to the birth parent. Both forms of time reference substantiate carers' inferences about birth parents' ineligibility for membership of the “good parent” category, and thus affirm their own entitlement as members, as key actions in the formulation of their complaints. We consider the implications of these findings for understanding co-constructed time-referenced devices such as “child's time”, and how Conversation Analytic studies could usefully investigate what other event-relative devices may be used to accomplish different social actions, and what identities might get constructed in the process.

Reporting Microaggressions: Kinship Carers’ Complaints about Identity Slights

The psychological concept of “microaggression” has refocused interest on what counts as prejudicial action. It redirects attention from standard socio-cognitive explanations of overt prejudice among social groups toward recipients’ perspectives of largely unwitting and subtle everyday racism. Microaggression studies define common implicit identity challenges faced by minority groups, including kinship carers. However, criticisms of the “microaggressions program” raise difficulties inherent in establishing prejudicial action from accounts of necessarily ambiguous actions, and contend that reliance on self-reporting inevitably lacks validity. This conversation analytic (CA) study offers a complementary approach: from videos of ten kinship carer support groups it shows how participants construct accountabilities for prejudicial actions in their retrospective reports of questions, challenges and suspicions in ways that build these actions as microaggressive. It addresses methodological shortcomings in microaggression studies, and extends CA research on accountability in offense construction, and on prejudicial social actions that are contested and difficult to analyze.

Support groups for carers of a person with dementia who lives at home: A focused ethnographic study.

To explore and understand carer participation in support groups when caring for a person with dementia who lives at home. Focused ethnographic design. Participant observations and semi-structured interviews were conducted from January-December 2015. The data were collected from four support groups in the Danish primary healthcare system. Interviews were conducted with 25 carers. An inductive content analysis of the data was performed. Three themes were identified: emotional well-being due to peer and family support, emotional sense of togetherness despite hardships and emotional and ethical considerations in caregiving. Support group participation with positive peer interaction increases carer self-esteem and feelings of togetherness, and an awareness of maintaining the care receiver`s dignity and prevention of conflicts with families, resulting in an improvement in carer well-being, leading to increased motivation to continue caring. Carers who hid their group participation face a potential conflict with the care receiver. By sharing positive experiences, carers have increased self-esteem and feelings of togetherness, which can have a positive impact on their motivation to continue caring. Positive peer interaction encouraged a shift in focus from negative to positive experiences, resulting in an improvement in carer well-being. Joint group participation prevented conflicts in families. To protect the care receivers, carers kept support group participation a secret. Healthcare professionals could improve carer well-being by focusing on positive caring experiences in support groups.

Male working carers: a qualitative analysis of males involved in caring alongside full-time paid work

Given ageing demographics, the need for carers will increase and studies suggest that men are nearly as likely as women to become carers. The purpose of this study is to understand the specific challenges that male working carers experience with regard to social life and paid work. Participant recruitment was conducted through local carer support groups and male-dominated workplaces. Using a semi-structured format, 15 interviews were conducted. Findings suggest a variety of themes, including caring characteristics, the effects of caring, support systems and coping strategies. Our results indicate that the male working carer population faces specific challenges in the workplace and social settings.

Exploring the abilities of performing complex daily activities in dementia: the effects of supervision on remaining independent

Objectives: The aim of this study was to explore the remaining abilities of people with dementia (PwD) in performing daily activities.Method: Informal carers of community-residing PwD were recruited across England via mail out and carer support groups. Carers completed the revised Interview for Deteriorations in Daily Living Activities in Dementia 2 to rate the PwD’s initiative and performance of daily activities. Six complex instrumental activities of daily living (IADLs) were selected: shopping, preparing a hot drink, using the telephone, preparing a cold meal, house work, and engaging in social activities, all of which were broken down into three sub-tasks. Data were analysed using Chi-square tests and linear regression analysis, assessing the contributions of hours of IADL care, hours of supervision, and dementia stage for each activity.Results: 581 carers of people with mild, moderate, and severe dementia completed the questionnaire. The ability to perform individual activities deteriorated from mild to moderate to severe dementia, with PwD remaining the most able to perform subtasks of preparing a hot drink and a cold meal. Subtask performance varied across activities, with some better maintained than others across severity stages. Linear regression models showed that hours of supervising PwD explained a greater proportion of the variance of each IADL than IADL care hours.Conclusion: PwD should be supervised to continue engaging in activities, thereby avoiding performing everything for the PwD. Findings can have implications for PwD living in nursing homes, and future research should explore the remaining IADL abilities of nursing home residents.