Carer Support Groups Research Articles

Dementia and the impact on carers

‘You’re as sick as they are but you’re not getting the support they are.’Exploring the views of relatives and carers in relation to the design of a carer support group offered by an older-adult inpatient ward.This mixed-methods service-based study aimed to explore the views of relatives and carers in relation to the design of a support group offered by an organic mental health older adult inpatient ward.

The Internet as Social Support for Older Carers of Adults With Intellectual Disabilities

AbstractSocial support is a potentially powerful mediator of well‐being for family carers. Given that social engagement often decreases with age, the Internet broadens the opportunities for aging carers of individuals with intellectual and developmental disabilities (I/DD) to provide support to one another. This article reviews what constitutes social support, its importance to older adults, and more specifically carers of those with I/DD. Computer and Internet usage by older adults is briefly reviewed. The Internet as a medium for facilitating social support and support groups for carers is discussed. The role of the Internet in the lives of people with I/DD is also briefly reviewed. The literature review, compiled from a literature search of PubMed, Science Direct, PsycInfo, OvidSP, and CINAHL databases, revealed that there is a relative paucity of information regarding support on the Internet for aging carers, particularly for aging carers for people with I/DD. The review also revealed the utility of the Internet to be utilized as a medium for social support groups. The authors noted that aging adults can acquire new technological abilities and cognitive benefits when learning new skills. Both older adults and individuals with I/DD benefit when web sites are attentive to layout and usability. The authors suggest that Internet‐based aging carer support groups that also incorporate educational content should be developed. Although many research questions remain about the design of Internet‐based carer groups, web sites that appeal to both carers and individuals with I/DD for peer support and information are interesting avenues for further investigation.

Improving support upon discharge from a hospice in-patient unit using a discharge pathway

An audit and staff survey, about discharges from our hospice inpatient unit, highlighted areas for improvement; delayed discharges, lack of training and delayed discharge letters. It also showed a lack...

Finding the right kind of support: A study of carers of those with a primary malignant brain tumour

PurposeCaring for someone with a primary malignant brain tumour is very demanding due to the dynamic situation involving changes to personality, short term memory loss and changes in family relationships. The purpose of this qualitative study is to examine the support needs of carers of those with a primary malignant brain tumour. Methods & sample22 Carers who were currently caring for someone with a primary malignant brain tumour were recruited from one specialist cancer centre in the south east of England. The study took a grounded theory approach and data were analysed using the constant comparative method generating categories and themes that are grounded in the data. Key resultsA key concept that emerged from the data was: ‘Connecting on the caring journey’. The themes that emerged from the key concept were: building helpful relationships; safe places and comfort zones; and threats to connecting. ConclusionsMany carers do find a great deal of support within the family and from their relationships with friends as well as from cancer and carer support groups. However this is by no means universal and many carers experience a lack of timely access to good quality supportive care services. For some carers supportive care services do not meet their expectations so they spend valuable time searching for the connections they need to continue to care combined with feeling frustrated and under pressure.

Setting up a support group for carers of stroke survivors

A stroke specialist nurse enlisted the help of women carers to develop a self-supporting carers' group in Northern Ireland. Members are offered information, advice and a forum for service improvement suggestions. Two founding members discuss their experiences of attending meetings.

Participants’ experiences of hospital-based peer support groups for stroke patients and carers

Purpose: The aim was to examine stroke patients’, carers’ and volunteer supporters’ experiences of peer support groups during hospital rehabilitation. Methods: Semi-structured interviews and questionnaires were analysed by inductive thematic analysis. Participants also answered a standardised Therapeutic Factors Inventory (TFI). Results: Five superordinate themes emerged for patients, carers and volunteer supporters. Three themes related to group processes; ‘practical issues’ (five subthemes), ‘staff presence’, ‘similarity-difference’, and comparison with other group members. ‘Value of peers’ (five subthemes) described beneficial outcomes. The ‘similarity-difference’ theme and four subthemes under ‘value of peers’ were related to items from the TFI which drew agreement from most participants. The supporters had some unique themes; two were concerned with group organisation, one was the experience of ‘being helpful to others’ and one described the experiences of training. As well as its links with themes, agreement with TFI items revealed experiences that did not emerge as themes; feeling secure, expressing emotions and increased independence. Conclusions: Participation in the group was experienced as beneficial by participants. Benefits included helpful information, advice, making new connections and increased awareness of stroke. Participants identified important group processes such as upward and downward comparison. Responses to the TFI suggested that attendance brought therapeutic gains.Implications for RehabilitationPeer support groups for stroke survivors and their carers, provided early during in-patient rehabilitation, are experienced as beneficial by survivors, carers and peer supporters alike.Peers supporters with similar backgrounds and experiences to the stroke survivors and carers are experienced as the most helpful.The inclusion of staff in the groups is viewed as important and helpful by participants.Therapeutic benefits experienced in the groups include: empowerment and inspiration; sense of belonging; learning new ways to cope; feeling helpful; feeling secure; being able to express feelings; a sense of increased agency and independence.

Carers support

In the last few years there has been a weath of research and literature identifying the importance of supporting Carers. The End of Life Care Strategy(2008) identified four key principles...

Awareness of local dementia services among general practitioners with academic affiliation

Cooperation with specialized services is one important resource for general practitioners (GPs) in managing dementia patients and caregivers. In a questionnaire study among GPs involved in university teaching (n=137) we asked if GPs knew of four types of local dementia services. A linear regression analysis was conducted to find associations with GPs' awareness. Day care services could be named by over two-thirds of GPs, patient support groups by nearly half, carer support groups and memory clinics by only 40%. Greater awareness of services was associated with better theoretical knowledge of dementia and GP practices in urban areas. In the light of the specificity of our GP sample, our results display remarkably poor awareness of institutions caring for demented patients and their relatives. A more active approach in acquainting GPs with dementia services, especially in rural areas, may enhance awareness and cooperation.

Help-seeking and service use for dementia in Italian, Greek and Chinese Australians

Objective: To explore the help-seeking strategies and the acceptance of services among a national sample of Italian, Greek and Chinese compared to third generation Australians. Methods: A cross-sectional telephone survey of 350 Italian, 414 Greek, 437 Chinese and 500 third generation Australians whose households were randomly selected from the national telephone directory was carried out. Participants were asked how they would seek help for a character in a vignette with dementia and what aged care services they would use. Results: The most frequently reported sources of help for all participants were general practitioners (55%), community organisations (27%) and family (26%). Significantly more racial minority participants reported that they would seek help from their families (32%) than did third generation Australians (13%). The percentage of participants who reported they would use aged care services were 96% for day activities, 95% for community nursing, 93% for bus outings, 91% for home help with housework, 88% for carer's support groups, 83% for nursing home care, 78% for one-week respite and 67% for Meals-on-Wheels. Racial minorities were equally or more likely to say that they would use some community-based services than third generation Australians and less likely to use residential respite. Italians were less likely to use permanent residential care. Acculturation parameters were inconsistently associated with help-seeking and service acceptability. Conclusions: Racial minority groups have a greater preference for community services than third generation Australians. There are differences between racial minority groups on help-seeking and acceptability of services. Education and outreach to these groups needs to be tailored.

Carers' clinics: support group for carers of heroin addicts

SummaryHeroin addiction, being a chronic condition, can have a devastating impact on carers of addicts. However, the information and support needs of carers often go unrecognised and unaddressed. ‘Carers' clinics’ are one such information-sharing and support group for carers of heroin addicts. This simple yet innovative service provision has been enthusiastically recieved by carers and has been running effectively since April 2007. We believe this scheme can be replicated across other services.

‘We need help’: Developing a support group for partners of patients who have suffered a heart attack

This paper describes a six-month pilot project aimed at using a carer support group to improve the care of patients’ partners by increasing understanding and knowledge of the changes in personality and behaviour noted post-heart attack.

An emotive subject: insights from social, voluntary and healthcare professionals into the feelings of family carers for people with mental health problems

Caring for people with mental health problems can generate a whole range of positive and negative emotions, including fear, disbelief, guilt and chaos as well as a sense of purpose, pride and achievement. This paper explores the emotions of family carers from the perspectives of social, voluntary and healthcare professionals. Sixty-five participants were interviewed, the sample included directors, managers and senior staff from social, voluntary and healthcare organisations. Participants were encouraged to talk in detail about their understanding of the emotions of family carers. Findings highlight a rich understanding of the broad spectrum of carer emotions and the huge emotional adjustments that are often involved. Diagnosis was seen to be imbued with negative emotions, such as fear, anger and denial. However, feelings of hopelessness and desolation were often counterbalanced by feelings of hope, satisfaction and the emotional rewards of caring for a loved one. Participants noted a clear lack of emotional support for family carers, with accompanying feelings of marginalisation, particularly during transitions and especially involving young carers as well as ethnic minorities. By way of contrast, carer support groups were suggested by professionals to be a holistic, effective and economical way of meeting carers' emotional needs. This paper explores the challenge of family carer emotions from the perspective of managers and practitioners and draws out implications for research, policy and practice.

Is bingo a psychological intervention? Developing a support group for stroke survivors and carers

This article describes the development of a stroke support group for stroke survivors and carers based on user consultation.

Editorial

Editorial

Carer support groups: the effects of organizational factors on the character of groups

Carer support groups are recognized as being a service aimed directly at meeting the needs of informal carers. Previous research has shown the value of carer groups in offering emotional support and information. This frequently, and probably most effectively, takes place informally between members of the group. This paper describes a study of six carer support groups in Glasgow. Support groups vary considerably in their organization. The factors common to all the groups included in this study were that they were local groups and they were all directly supported by a professional worker from the social work department. Two of the groups were off-shoots of day centres. The other four groups were free standing: two were generic (open to all types of carers), two were specific to a particular client group. Previous studies have tended to be evaluations of particular support groups rather than comparisons of a number of groups. This paper examines the impact of certain organizational factors of carer support groups on the character of the groups and the effect this has on indicators of group effectiveness. The results of the Glasgow study suggest that the character of the group and its outcomes for group members is indeed related to aspects of group organization. The groups' links with service providers, and whether the group had a specific or generic client group focus were considered relevant factors.

Support Needs of Family Caregivers of People who Experience Mental Illness and the Role of Mental Health Services

Family caregivers are an irreplaceable resource for the mental health services system and the pillars on which the system currently rests. Addressing the needs of these caregivers is therefore crucial for the survival of the system. This paper will present findings from a qualitative study that aimed to explore the experiences and needs of family caregivers whose relatives were at various stages of recovery from mental illness. Participants for the study were members of carer support groups as well as non-member caregivers from various regions of Sydney, Australia. The findings highlight the heterogeneity among caregivers, the diversity in their needs, and the difficulties they experience in accessing support from public mental health services.

Perceived Benefits and Difficulties Experienced in a Mutual Support Group for Family Carers of People With Schizophrenia

In this qualitative study, the authors explore from the participants' perspective the benefits and difficulties experienced by participants in a mutual support group for Chinese family carers of patients with schizophrenia in Hong Kong. Thirty family carers and 10 patients who had participated in a 12-session mutual support group were interviewed, and the 12 group sessions were audiotaped for content analysis. Three main themes emerged from the data: (a) positive personal changes attributed to group participation, which included enhanced self-identity and acceptance of the caregiving role, increased knowledge of the illness, and adoption of new coping skills; (b) positive characteristics of the mutual support group, including the explicit group ideology and consensus, perceived social climate of the group, and informational support and empowerment; and (c) major inhibitors of group development, specifically low or irregular group attendance, negative pressure from dominant members, and overexpression of intense and negative feelings. These findings contribute to our understanding of the therapeutic components and limitations of mutual support groups for family carers.

Heart failure and palliative care services working in partnership: report of a new model of care

It is widely acknowledged that people with advanced heart failure have at least as great a need for supportive and palliative care as those with malignant disease. However, specialist palliative care services are seldom involved in their care in the UK. We describe a three-year collaboration between community-based heart failure nurse specialists and existing specialist palliative care services. In the model of care that has evolved, the heart failure nurses remain key workers throughout the illness. They run a regular support group for patients and carers in the setting of a hospice day therapy unit, referring patients for other palliative care involvement as necessary. Activity data and the results of patient interviews are presented. These suggest that the model is a cost effective, sustainable way of providing high quality care for people with heart failure.

Evaluation of a support group for spouse carers of older people with dementia

Evaluation of a support group for spouse carers of older people with dementia

CADS: Carer and Depression Support Group

This article is about a small community group of consumers and professionals working together to provide support for people with depression and their carers. The group runs regular support groups, and recently held a community forum on depression. The group is a good example of partnerships and consumer-driven services.