Nursing leaflets and brochures. Are they the most appropriate source of information for chronic neurological patients and carers?

Transcription

1 Nursing leaflets and brochures. Are they the most appropriate source of information for chronic neurological patients and carers? RCN annual international nursing research conference Cardiff 2009 Mari Carmen Portillo BSc MSc PhD RGN Sarah Cowley BA. PhD. PGDE. RGN. RHV. HVT

2 BACKGROUND Information needs of acute patients are clearly stated. What about chronic conditions? Many practitioners assume that chronic patients and carers know a lot due to the long term process. Research on long-term conditions: symptoms, psychological problems. We need to assess information needs before we design educational programmes. Some multidisciplinary rehabilitation programmes have included written information packs to meet coping and counselling needs of neurological patients and carers. Gap: What is the nursing contribution and how has this written information been developed and used?

3 AIMS To describe the development and handling process of leaflets and brochures in a neurological setting To reflect on their usefulness for nurses, and chronic neurological patients and carers.

4 METHODOLOGY AND DESIGN PART I: ACTION RESEARCH (completed 2006) TIPOLOGIES: Professionalising and experimental typologies of Hart and Bond (1995) DATA COLLECTION LENGTH: 30 months and three cycles completed (Lewin 1946) SETTINGS: Two neurological wards of a specialised hospital in Spain PART II: OPINION S (2007, 2008) Leaflets and brochures available on Internet ETHICS: Ethical approval and informed consents were obtained

5 METHODOLOGY AND DESIGN Groups of participants: Part I. The project 37 nurses Group 1 or baseline group: 22 patients/22 relatives Group 2 or intervention group: 18 patients/18 relatives Part II. The afterwards Opinion s: N=10 Data analyses: Content analysis N-Vivo v.2.0 Statistical analysis SPSS v.13.0

6 METHODOLOGY & DESIGN Assessment stage Planning & action stages Evaluation stage Opinion s Socio-demographic forms Semi-structured interviews Observations Educative programme with nurses (2 planning & 3 educative sessions) Semi-structured interviews Observations Rivermead scale of ADLs Content analysis Barthel Index of ADLs Fieldnotes Planning & implementing the social rehabilitation programme Social life scales Field notes

7 THE SOCIAL REHABILITATION PROGRAMME

8 NURSING REPORT ASSESSMENT AND REGISTRATION OF SOCIAL REPERCUSSION OF THE DISEASE USEFUL TELEPHONE NUMBERS AND ADDRESSES FOR POST- DISCHARGE: SOCIAL SERVICES, ASSOCIATIONS COMPUTER PROGRAMME PICIS LEAFLETS/BROCHURES. HANDLING, EXPLANATION AND SOLVING DOUBTS GUIDELINES AND CHOICES FOR COMMUNITY AND SOCIAL LIFE

9 THE DEVELOPMENT OF LEAFLETS AND BROCHURES LEAFLETS Disease AND symptoms BROCHURES Caring role ASSESSMENT AND PLANNING DATA Self-care Why did we decide to include leaflets and brochures in the Emotional SR programme? changes Social life R3PDg1 Nurses!!!!???? They don t get that involved. This is one more patient for them. The treatment is perfect but that s it. I am looking for N15: I think that during hospitalisation with these patients we can't do much... I mean, they know a lot about the disease, more than us How did we work with clinical nurses to develop social the resources Architectural leaflets and and aids hazards on brochures? my own!!!!! Social resources How did we decide on the contents of the leaflets and brochures? Health professionals Associations of patients

10 AVAILABILITY OF LEAFLETS ACTION AND BROCHURES How did we integrate leaflets and brochures in nurses daily practice? Nursing computer programme (planning of education and keeping records) Support from the hospital and funding from the Government of Navarra to develop the leaflets. Possibility of having the leaflets and brochures available on the Hospital websites. Now: On other websites and in several patients forums. Not an easy process. Team work versus competition

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12 VARIABLES BASELINE (N=78) EVALUATION (N=113) P- VALUE Informative/educative interactions nurses (n= 70,108) Yes No (it could then be by doctors) 22 (31.4%) 48 (68.6%) 48 (44.4%) 60 (55.6%) 0.08 Contents of informative/educative interactions (n= 35, 50) Lay participation in care Rehabilitation Social rehabilitation programme (other health professionals and centres, home services and structure, social services and resources, leisure activities) Disease/treatment/physical aspects Discharge planning, transport Budget 2 (5.7%) 1 (2.9%) 1 (2.9%) 27 (77.1%) 3 (8.6%) 1 (2.9%) 5 (10.0%) 2(4.0%) 31 (62.0%) 29 (58.0%) 1 (2.0%) 0 (0.0%) 0.44 a 0.78 < a 0.20 a Chi-Square analysis. a. Mid-p value (Exact test) used due to low expected frequencies

13 VARIABLES BASELINE (N=78) EVALUATION (N=113) P- VALUE Who had the initiative? (n=35, 50) Nurse Patient Relative Doctor More than one? 14 (40.0%) 0 (0.0%) 5 (14.3%) 14 (40.0%) 2 (5.7%) 32 (64.0%) 2 (4.0%) 3 (6.0%) 2 (4.0%) 11 (22.0%) a 0.20 a < Who was informed? (n=35, 50) Patient Relative Both 7 (20.0%) 13 (37.1%) 15 (42.9%) 13 (26.0%) 16 (32.0%) 21 (42.0%) 0.79 Chi-Square analysis. a. Mid-p value (Exact test) used due to low expected frequencies

14 VARIABLES BASELINE (N=78) EVALUATION (N=113) P- VALUE Informative/educative resources? (n=35, 50) No resources (Oral) Leaflets and brochures Internet Other documentation (nursing/medical reports, phone /address) 31 (88.6%) 0 (0.0%) 1 (2.9%) 3 (8.6%) 33 (66.0%) 15 (30.0%) 0 (0.0%) 2 (4.0%) <0.001 a Chi-Square analysis. a. Mid-p value (Exact test) used due to low expected frequencies

15 USEFULNESS OF LEAFLETS AND BROCHURES NURSES EVALUATION DATA The education process was eased N12: At some point leaflets can be helpful. I prefer standing in front of the patient and family with the leaflets in my hand, like I have something to give them already rather than saying: yeah, somebody The role will inform as educators you Now we can was check more directly how visible the in family responds the wards N5: We have assessed patients and relatives information needs, we have informed them and explained solutions, I think that we have been responsible for this more than before.

16 USEFULNESS OF LEAFLETS AND BROCHURES PATIENTS/CARERS EVALUATION DATA PART I 1 (PD): Congratulations for these leaflets. This information is necessary. I would like to have further contact 7 (MS): I have received this leaflet through an MS patients forum. We all find it very useful to help our relatives and friends understand our disease, feelings, thoughts 9 (PD): Thank you for this information. I am going to make my relatives read this leaflet. This will make them stop saying I am obsessed P6msg2: Do you see those leaflets? I brought them for my visits so that my family and friends can read about MS. Interviewer: Positive views Did you use to do that before or it as been after this last admission? Wishes for further contact/research P6msg2: No, I think that it was probably after you and Susanne (a Patients and carers obtained information as doubts emerged Conversations with nurses More nursing advice for services and resources More aware of nurses educator role and positive impact on attitudes and patient-carer relationship like in part II PART II nurse Leaflets of the disseminated ward) interviewed on Websites me. You helped and circulated me, intentionally through or not forums. you did Need it. I realised for information that it could be interesting to clarify many things Support my loved and ones understanding don't know. of loved ones

17 CONCLUSIONS Written information eased the educative process and constituted a reliable source of information. The nursing role as educators of chronic patients and carers is essential but must be supported by resources to ensure effectiveness. Leaflets and brochures were designed according to individual needs of professionals and clients. Involvement. Possibilities of evaluating the usefulness of information at two levels: Project General public: Internet The information needs of chronic patients and carers must not be assumed but assessed in admissions to adapt education.

18 THANK YOU