Publications by Leili Lind

An information system supporting pain assessment in palliative home healthcare was implemented at the hospital-based home care clinic of University Hospital in Linkoping, Sweden. Using digital pens and pain diaries, pain assessments were sent from the patients home to the professional caregiver. A total of 12 patients participated in the study. Patients, spouses and professional caregivers were interviewed. Qualitative content analyses were performed on the study material. All patients managed to use the pain assessment method, they experienced an improved contact with the caregivers and had a sense of increased security. After an initial cautious outlook the caregivers experienced positive outcomes for themselves and their patients. The medical records showed that the method had had impact on treatment. In conclusion, the home healthcare solution provided an effortless method for pain assessment with a high degree of user acceptance for palliative patients and had positive influences on the care.

Frequent pain assessment by the use of pain diaries for the follow-up of pain treatment can facilitate the caregivers' work with pain control in home health care. The aim was to explore and describe professional caregivers' experiences of palliative home health-care patients' use of pain diaries and digital pen technology for frequent pain assessment. A system for the follow-up of pain treatment was implemented in routine care and evaluated by means of a qualitative content analysis. Three nurses, two physicians and one secretary were interviewed. Additional analysis data were collected from patients' medical records, and the system log. The caregivers showed a shifting outlook towards the pain-assessment method, an initial cautious outlook due to low expectations of the patients' abilities to use the pain assessment method. Despite this, the caregivers experienced positive outcomes in terms of an increased awareness of pain, and positive patient influences including increased participation in their care, increased security, and improved changes in pain treatment as a response to reported pain assessments. Pain assessment by the use of pain diaries and digital pen technology has positive influences on palliative home-care patients and supports the caregivers' focus on the pain.

In order to counteract the digital divide and to enable the society to reach all its citizens with various kinds of e-services, there is a need to develop access methods and terminal technologies suited also for groups with weak access to the Internet, not the least elderly and people needing care in their homes. In this chapter, the authors will describe technologies for using digital pen and paper as data input media for e-services and computing applications, refer a number of applications together with studies and evaluations of their usability, and finally comment upon future prospects for integrating digital pen and paper as an effortless technique for data capture, especially in order to counteract and diminish the digital divide. The use of digital pen and paper technologies is exemplified with applications demonstrating its appropriateness in home care for elderly, for free-form recording of data on paper such as maps, and as a remote control for a TV set or other electronic appliances with rich functionality in the home.

When care is moved from the hospital to the home the demands for high quality care still remain. For problems arising from the geographical separation of patients and professional caregivers, information and communication technology may offer important solutions. The overall aim of this thesis was to describe relevant requirements, to design and implement an IT-based system, and finally to evaluate the system’s influence on symptom control and support for both patients/next-of-kin and professional caregivers in advanced home healthcare. Of importance were needs in basic as well as advanced home healthcare, as were usability perspectives of both patients and professional caregivers. Requirement areas such as security, mobility, and responsibility, which should be considered when monitoring patients in the home, were identified. A prototype system for everyday assistance for diabetes patients was designed, and a system for frequent pain assessment for palliative home healthcare patients using a pain diary, digital pen and mobile Internet technology, was developed and evaluated through a qualitative content analysis approach. Twelve palliative cancer patients and six professional caregivers participated. The data collected included an ease-of-use questionnaire, and interviews with patients, spouses and professional caregivers. Patients expressed increased and improved contact with the caregivers, increased participation in their own care, a sense of increased security, and easiness in using the equipment in spite of severe illness and difficulties in comprehending the technology and system intervention. The professional caregivers showed a shifting outlook towards the pain assessment method; an initial cautious outlook due to low expectations of the patients’ abilities to use the pain assessment method and the caregivers’ own reluctance to use the system and change their way-of-working. Despite this, the professional caregivers experienced positive outcomes in terms of an increased awareness of pain, and positive patient influences including increased participation in their care, increased security and improved changes in pain treatment as a response to reported pain assessments. In conclusion, the networked digital pen system provided an effortless method for pain assessment and had positive influences on the care. The results imply that digital pen technology is suitable for the assessment of symptoms by palliative patients since these patients often have a limited capacity to handle technology due to their state of health.