Lessons learned from participatory research to enhance client participation in long-term care research: a multiple case study.

BACKGROUND: Although participatory research is known to have advantages, it is unclear how participatory research can best be performed. This study aims to report on lessons learned in collaboration with service users involved as co-researchers in three participatory teams in long-term care. METHODS: A multiple case study design was chosen to explore the collaboration in three teams, each covering one specific client group receiving long-term care: physically or mentally frail elderly people, people with mental health problems or people with intellectual disabilities. RESULTS: A good working environment and a good collaboration were found to be crucial requirements for participatory research. A good working environment was developed by discussing reasons for engagement and wishes, formulating basic rules, organizing training sessions, offering financial appreciation, and the availability of the researcher to give travel support. The actual collaboration was established by developing a bond and equal positioning, deciding on the role division, holding on to transparency and a clear structure, and have sufficient time for the collaboration. Moreover, the motivations and unique contributions of the co-researchers and differences between the teams were reported. The motivations of co-researchers ranged from individual goals - such as personal development, creating a new social identity and belonging to a social group - to more external goals, such as being valuable for other service users and increasing the quality of care. An inclusive collaboration required valuing the individual contributions of co-researchers and adjustment to team differences. CONCLUSIONS: The results showed the importance of developing a good working environment and establishing a good collaboration for participatory research. Furthermore, the study shows that individual and team differences should be taken into account. These results can be used by researchers for designing and shaping future research projects in long-term care in collaboration with co-researchers.

Qualitative instruments involving clients as co-researchers to assess and improve the quality of care relationships in long-term care: an evaluation of instruments to enhance client participation in quality research.

OBJECTIVES: Enhancing the active involvement of clients as co-researchers is seen as a promising innovation in quality research. The aim of this study was to assess the feasibility and usability of five qualitative instruments used by co-researchers for assessing the quality of care relationships in long-term care. DESIGN AND SETTING: A qualitative evaluation was performed in three care organisations each focused on one of the following three client groups: frail older adults, people with mental health problems and people with intellectual disabilities. A total of 140 respondents participated in this study. The data comprised observations by researchers and experiences from co-researchers, clients and professionals. RESULTS: Two instruments scored best on feasibility and usability and can therefore both be used by co-researchers to monitor the quality of care relationships from the client perspective in long-term care. CONCLUSIONS: The selected instruments let co-researchers interview other clients about their experiences with care relationships. The study findings are useful for long-term care organisations and client councils who are willing to give clients an active role in quality improvement.

The COMFORT behavior scale: is a shorter observation period feasible?.

OBJECTIVE: The COMFORT behavior scale has been validated for postoperative pain in 0- to 3-yr-old children. Scoring is preceded by a 2-min observation period, which nurses may consider too long. The objective of this study was to test the reliability of a 30-sec observation period. DESIGN: Observational study. SETTING: One Level III intensive care unit at a university children's hospital. PARTICIPANTS: Designated pain specialist and all nursing staff. INTERVENTIONS: None. MEASUREMENTS: The pain specialist and caregiver nurse each conducted a bedside COMFORT behavior scale assessment and assigned an additional pain rating on the 11-point Numerical Rating Scale. MAIN RESULTS: Total COMFORT behavior Scale score for the 2-min observation was 17 or higher in 19% of the patients and 11% for the 30-sec observation. The mean COMFORT behavior scale score for the 2-min observation was 13.5 (SD 3.8) and 12.7 (SD 3.7) for the 30-sec observation. The mean difference therefore was 0.8 (confidence interval 0.6-1.1, paired t test, p < .001). Sensitivity and positive predictive value for the 30-sec observation were 0.44 and 0.80, respectively. CONCLUSIONS: A 30-sec COMFORT behavior scale observation increases the risk of underscoring pain. Therefore, the 2-min observation period should be adhered to in the interest of the patients.

Does postoperative 'M' technique massage with or without mandarin oil reduce infants' distress after major craniofacial surgery?

AIM: This article is a report of a randomized controlled trial of the effects of 'M' technique massage with or without mandarin oil compared to standard postoperative care on infants' levels of pain and distress, heart rate and mean arterial pressure after major craniofacial surgery. BACKGROUND: There is a growing interest in non-pharmacological interventions such as aromatherapy massage in hospitalized children to relieve pain and distress but well performed studies are lacking. METHODS: This randomized controlled trial allocated 60 children aged 3-36 months after craniofacial surgery from January 2008 to August 2009 to one of three conditions; 'M' technique massage with carrier oil, 'M' technique massage with mandarin oil or standard postoperative care. Primary outcome measures were changes in COMFORT behaviour scores, Numeric Rating Scale pain and Numeric Rating Scale distress scores assessed from videotape by an observer blinded for the condition. RESULTS: In all three groups, the mean postintervention COMFORT behaviour scores were higher than the baseline scores, but differences were not statistically significant. Heart rate and mean arterial pressure showed a statistically significant change across the three assessment periods in all three groups. These changes were not related with the intervention. CONCLUSIONS: Results do not support a benefit of 'M' technique massage with or without mandarin oil in these young postoperative patients. Several reasons may account for this: massage given too soon after general anaesthesia, young patients' fear of strangers touching them, patients not used to massage.