Articles/1996/5
RHP&EO is the electronic journal of the International Union for Health Promotion and Education

Hand in Hand: Encouragement and facilitation of support and self-help group use

Christen D.J. Barras, Naomi Bloom, Suzy L. Cook, Zoya J. Luzhansky, Bradley S. Skinner

Internet publication: 21 August, 1996
Work by Monash University Medical students, produced as part of the health promotion subject offered at year three.

NB: Appendices are not available on the online version

Barras C, Bloom N, Cook S, Luzhansky Z, Skinner B. Hand in Hand: Encouragement and facilitation of support and self-help group use. Internet Journal of Health Promotion, 1996. ijhp-articles/1996/5/index.htm.

Abstract

Our project aimed to heighten public awareness of available support groups. Of 75 community members, 67% thought they may have previously benefited from support groups, and 94% believed the health service provider was responsible for providing information about support groups. These results motivated personal interviews with 43 health providers (general practitioners, physiotherapists, occupational therapists and naturopaths). 85% of health providers conceded minimal knowledge of support groups. All agreed that insufficient information is currently available, and claimed that if they possessed an easy-to-use directory of support groups, they would regularly use it to refer patients to these groups. Health providers' evaluations of an existing directory of support groups enabled us to compile a critique of one such guide. We also conducted media campaigns aiming to increase awareness of these support groups, directed at both patients and health providers. Our principal findings revealed the importance of both the health provider and the media as information sources for support groups.

Keywords:

self-help group, support group, directory, COSHG, media, health service provider, group therapy, coping skills, patient autonomy, health promotion, complementary medicine, mutual aid

Background

Self-help groups are comprised of people who have a common problem, who meet together to support and encourage one another, whilst sharing experiences, knowledge and coping skills. These groups provide access to long-term support, mutual aid, and group discussion - powerful therapeutic and empowering activities - which are often not possible through consultation with health providers. In addition, these groups provide an atmosphere in which patients can freely discuss broader aspects of their health, without time constraints. Amongst sympathetic peers, support groups help to de-stigmatise patients' problems, increase their social contacts, and promote feelings of self-worth by making contributions to the well-being of others. Most importantly, patients often achieve clearer perspectives of their situation, and re-establish autonomy in the promotion of their health status (1). Family and friends can also benefit.

A powerful illustration of the benefits of support groups to health outcomes is found in a recent study by Dr. David Speigel (2). Breast cancer patients receiving both cancer treatment and self-help group therapy tended to survive two years longer than patients receiving only routine cancer treatment. The additional therapy involved group discussion about feelings and the teaching of relaxation techniques. Studies into rehabilitation of spinal cord injured adults have also shown that contact amongst such persons is an important factor in adjustment to the injury and resultant disabilities (3). Interestingly, provision of self-help meetings for high-risk injecting drug users has even been found to achieve HIV risk reduction (4).

Health Issue

As medical students for the last three years, we have been involved in discussions with patients, their families and health providers - it was with alarm that we noted that many patients are unaware of support groups that are available to help them with illnesses and other problems. Discussion with patients, as well as a review of relevant literature (1-9), indicated that such facilities can improve patient well-being. These results prompted us to further investigate the extent of community awareness of these valuable resources. Our initial studies (see results) demonstrated a significant hiatus between patient demand for support group services and health provider corresponding referral practices.

Priority Population Group

Our priority population incorporates members of the public with health needs which may benefit from support group services. Our initial results suggested that a significant proportion of the population could benefit from these services. We have chosen health providers (general practitioners, physiotherapists, occupational therapists and naturopaths) as our primary intervention group, because their practices have an enormous impact on the well-being of patients.

Goal

To increase patient health and well-being by heightening public awareness about the vast diversity of support groups available in the community

Targets/Objectives

To increase the frequency with which Victorian general practitioners recommend patients to support groups
To increase the percentage of Victorian naturopaths, occupational therapists and physiotherapists that recommend support groups to patients
To increase the diversity of groups being recommended to patients by all four categories of health providers

Sub-objectives

To increase the proportion of health providers with adequate knowledge upon which to base routine referral practices
To increase the proportion of health providers who have ready access to information about support groups
To suggest improvements to an existing directory which might encourage its use
To increase the proportion of patients who ask their health providers about support groups

Strategy Objectives

Conduct a survey in order to assess current knowledge, attitudes and usage of support groups in the community
Conduct personal interviews with four groups of health providers including general practitioners, physiotherapists, occupational therapists and naturopaths in order to assess their knowledge, attitudes and usage of support groups as part of patient care
Evaluate a directory by the Collective of Self-help and Social Action Groups (COSHG) in terms of its ease of use, presentation and content by asking health providers to assess it (10). Provide COSHG with this evaluation and advice for improvement
Conduct a media campaign on the existence of support groups to increase public awareness and encourage patient inquiries of health providers
Present seminars and conduct a media campaign, addressed to health providers, on the existence of support groups and their facilities, and on how to choose and refer patients to these

Strategies and Methods

A) To conduct a needs assessment, we:

interviewed 50 members of the public and 25 patients regarding their
knowledge, attitudes and usage of support groups
analysed our results to:
- determine the degree of felt need (11) in the community for increased awareness of and information about self-help/support groups
- establish the best means by which public awareness can be improved

We hypothesised that an easy-to-use directory of available support groups for health providers would be the best way to provide health providers with support group information to pass onto patients. Learning that many health providers are unaware of such directories prompted us to investigate why such directories were insufficiently used for this purpose.

B) After careful evaluation of existing publications, chose a directory deemed most suitable for assessment (COSHG) by merit of its brevity, breadth, and appropriateness of content.

C) Conducted personal interviews with four groups of health providers, including general practitioners (as primary care-givers for the majority of patients), physiotherapists and occupational therapists (who see patients with problems of chronic and rehabilitative nature) and naturopaths (whose patients are already seeking complementary therapies). We selected our health providers from a broad range of geographical areas and socio-economic environments to minimise selection bias.

D) Used the information obtained from these interviews to produce an evaluative report for the editors of COSHG.

E) Conducted a media campaign using newspapers and medical journals to educate health providers about their potential role.

F) Educated patients via newspapers, popular press, radio and posters in waiting-rooms.

Results

The results of our community surveys1 and health provider interviews showed that:

Community Surveys	Health Provider Interviews
94% claimed that health providers should be responsible for informing the public about support groups (>80% perceived the media as also possessing a role in public awareness in this issue)	85% of health providers claimed minimal knowledge about support groups Health providers unanimously agreed that information about support groups is insufficiently available 100% of health providers interviewed expressed a definite need for an easy-to-use directory, claiming that if they possessed such a directory, they would regularly use it
87% of attendees found support groups so useful as to recommend them to others	On a scale of one (useless) to five (extremely useful), health providers rated support groups on average 4.10
67% ofinterviewees believed a support group would have been beneficial to them in the past, but were not advised about their existence. Only 30% had attended a support group in the past	In the past, all general practitioners interviewed had referred patients to support groups, whilst a small but notable number of other health providers had never done so
	25% of health providers feared support group interference with their management of patient care, and were concerned about quality of support group information

Patient surveys were not significantly different from those of the general public.

Health providers contributed an abundance of qualitative data of considerable value to aid in the improvement of COSHG. These included criticisms of COSHG's presentation, content and ease of use.

Suggestions/Observations include:

PRESENTATION

uninviting/unmemorable title
aesthetically displeasing cover (only the naturopaths were happy with the cover )
a need for more professional presentation ie. laminated cover
glossy pages, more appealing logo, better colour selection.
elimination of the cartoons currently distributed throughout the directory

EASE-OF-USE

finger-finders + coloured pages
all health providers were very pleased with the index, although some suggested:
- that telephone numbers should be included in the index for quick reference
- there should be cross referencing with locality guides
current directory requires a more distinct separation of city vs rural groups
current directory lacks clarity due to too many entries per page

CONTENT

most health providers were pleased with the introduction, however the aims stated by COSHG are, to an extent, unrealistic and ill-defined
health providers were impressed with the diversity of groups listed, but some entries are so obscure as to undermine the credibility of the directory
whilst acknowledged, the directory's lack of comprehensiveness was a concern of several health providers (eg. in areas of community centres, hospital-based groups, etc.)
overall, health providers were impressed with the amount of information in each entry, apart from the two following aspects:
- each entry should disclose professional affiliations
- religious connections should also be included

NOTE: Many health providers objected to personal cost, believing the government should provide it free of charge

Evaluation

(1) Process Evaluation

Needs assessment: 75 patients and community members were interviewed - a number chosen to obtain qualitative and informative results given the time frame. Further statistical significance might be obtained with greater numbers interviewed. Selection bias might be further avoided using computer-assisted randomisation.

HEALTH PROMOTION APPROACHES:

Knowledge and Attitudes of Health Providers:	Personal interviews with 43 health providers successfully provided qualitative feedback about current health provider knowledge, attitudes and referral practices. For quantitative data, ideally a greater number of health providers could be interviewed. Investigator bias could be minimised by one investigator conducting all surveys.
Health Information Resources:	The strategies for evaluating COSHG were highly appropriate because qualitative data was sought directly from the intervention group
Media Reach (Health Providers and Consumers):	Process evaluation of our media attempts corresponds to the number of readers and listeners whom our message reached. However, we have not yet had feedback as to the quality of the material, although three publications are due to publish our results in the near future.

Press releases focussing on health providers were sent to various journals. Letters-to-the-editor aimed at consumers were sent to newspapers, newsletters and popular press magazines.

We are very pleased that Australian Doctor (reach 23,000) will publish our results on October 25, 1995. In addition, Australian Family Physician (reach 22,000) and the Australian Association of Occupational Therapy Newsletter (reach 3,000) will both publish articles written by our group in their next issues.

The radio station 101.1 TTFM, with an audience of 57,000 listeners, aired a community announcement on support groups on our behalf on September 27. In addition, 91.5 FM has promised to broadcast this issue next month. We are also anticipating a response from the Neil Mitchell Talkback Show about participation in a discussion on this topic.

(2) Impact Evaluation

Various impact evaluation methods are appropriate for each of the media we have utilised. Due to time constraints, these evaluations were unable to be performed. However, this is how such evaluations could be conducted:

PROPOSED METHODS OF EVALUATION:

Journal Article	Popular Media (eg. radio, newspaper)
Target:	Increase GP and other health provider awareness of the existence of support groups and the potential benefits they offer to their patients	Increase public awareness and encourage patients to ask health providers about support groups
Proposed method of evaluation:	Following publication, a random survey of health providers to ascertain if they had read and acted upon out health message	Following publication, readers and listeners would be surveyed at random to measure a response to our message

A follow-up survey of health provider support group referral practices would provide us with an accurate impact evaluation, but requires a longer time frame. Some accomplishment of sub-objectives has undoubtedly been achieved, by:
- increasing health provider awareness in the process of personal interviewing and through the Austrafian Doctor, Australian Family Physician and the Australian Association of Occupational Therapists Monthly Newsletter
- evaluating COSHG and providing its editors with suggestions for improvement, as well as bringing this resource to the direct attention of all those interviewed.
- increased patient awareness by conducting community and patient interviews, as well as radio announcements

(3) Outcome Evaluation

The achievement of our goal is a long-term process that cannot be evaluated within the time period of this project.

Discussion

We originally planned to create an easy-to-use reference guide of support groups to provide health providers with a source for obtaining details to give their patients. Further research revealed a variety of similar directories already in publication. We then re-evaluated the best way to achieve our goal - deciding that rather than creating a new directory, a more productive and worthwhile exercise would be to establish why many health providers are unaware of pre-existing directories. Consequently, we changed our strategy and altered some targets and objectives.

Ideally, it would be more informative to give health providers COSHG for 6 months and then reassess referral practices. A further limitation, not addressed in detail in this project, is assessment of value of individual support groups and providing health professionals with this information.

From our results it appears that COSHG has great potential but could benefit from establishment of distinct goals and targets as well as determining effective strategies for evaluation and distribution.

Note that literature and our surveys have indicated that support groups are inappropriate for some patients - motivation and personality determine individual benefit from group situations. This considered, it must be lea to health provider discretion to assess the appropriateness of any one support group for an individual patient.

Further recommendations:

a poster for health provider waiting-rooms
education of health providers at seminars. (unfortunately, RACGP was unresponsive when we attempted to arrange this).
education of other health providers eg. physicians
our results could be used by COSHG to seek funding

Conclusions

Patients and their health providers often recognise, and have in many cases experienced, the potential value of support groups in improvement of patient health and well-being
At the same time, we confirmed an information shortfall in which GPs and other health providers lack sufficient contact detail information at hand to give patients, or do not think to provide it
Our findings suggest that many patients and health providers perceive the health provider together with the media as being appropriate sources for this information to come from
COSHG, or another such directory provides a potential source of such information, but improvements are required and marketing strategies clearly need to be restructured. Cost is an impediment which needs to be addressed further
The media is a potential source of encouraging awareness of support groups, both by patients and their health providers

Acknowledgements

COSHG provided data and directories to assist in our research.

References

(1) Taylor SE. The Modifications of Health Behaviours. In: Taylor SE Health Psychology. Los Angeles: Random House. 1986.

(2) Spiegel D. The effect of psychosocial treatment on survival of patients with metastatic breast cancer. Lancet 1989;2(8668):88-94.

(3) Payne JA. The contribution of group learning to the rehabilitation of spinal cord injured adults. Rehabil Nurs 1993;18(6):375-9.

(4) Sibthorpe B, Fleming D, Gould J. Self-help groups: a key to HIV risk reduction for high risk drug users? J AIDS (us) 1994;7(6):592-8.

(5) Mock L. A nursing rehabilitation program for women with breast cancer receiving adjuvant chemotherapy. Oncol Nurs Forum (us) 1994;21 (5):899-908. (abstr)

(6) Kaps EC. The role of the support group "Us Too". Cancer (us) 1994;74(7 Suppl) :2188-9.

(7) Willits MJ. Role of"Reach to Recovery" in breast cancer. Cancer (us) 1994;74(7 Suppl):2189-95.

(8) Pitts F. Comrades in adversity: the group approach. Health Visit (England) 1995 ;68(4): 144-5.

(9) Commonwealth Department of Human Services and Health. Information needs for health promotion in primary health care: Summary Report. Canberra, ACT: CDHS&H. 1995.

(10) Collective of Self Help and Social Action Groups. Directory of self help and social action groups. Seventh Edition. Melbourne, VIC: COSHG, 1994.

(11) Hawe P, Degeling D, Hall J. Evaluating Health Promotion. Sydney, NSW: MacLennan & Petty. 1993.

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