Keep in Touch (KIT): feasibility of using internet-based communication and information technology in palliative care.

BACKGROUND: Confinement to an in-patient hospital ward impairs patients' sense of social support and connectedness. Providing the means, through communication technology, for patients to maintain contact with friends and family can potentially improve well-being at the end of life by minimizing social isolation and facilitating social connection. This study aimed to explore the feasibility of introducing internet-based communication and information technologies for in-patients and their families and to describe their experience in using this technology. METHODS: A cross-sectional survey design was used to describe patient and family member experiences in using internet-based communication technology and health care provider views of using such technology in palliative care. Participants included 13 palliative in-patients, 38 family members, and 14 health care providers. An iPad or a laptop computer with password-protected internet access was loaned to each patient and family member for about two weeks or they used their own electronic devices for the duration of the patient's stay. Quantitative and qualitative data were collected from patients, families, and health care providers to discern how patients and families used the technology, its ease of use and its impact. Descriptive statistics and paired sample t-tests were used to analyze quantitative data; qualitative data were analyzed using constant comparative techniques. RESULTS: Palliative patients and family members used the technology to keep in touch with family and friends, entertain themselves, look up information, or accomplish tasks. Most participants found the technology easy to use and reported that it helped them feel better overall, connected to others and calm. The availability of competent, respectful, and caring technical support personnel was highly valued by patients and families. Health care providers identified that computer technology helped patients and families keep others informed about the patient's condition, enabled sharing of important decisions and facilitated access to the outside world. CONCLUSIONS: This study confirmed the feasibility of offering internet-based communication and information technologies on palliative care in-patient units. Patients and families need to be provided appropriate technical support to ensure that the technology is used optimally to help them accomplish their goals.

Keep in touch (KIT): perspectives on introducing internet-based communication and information technologies in palliative care.

BACKGROUND: Hospitalized palliative patients need to keep in touch with their loved ones. Regular social contact may be especially difficult for individuals on palliative care in-patient units due to the isolating nature of hospital settings. Technology can help mitigate isolation by facilitating social connection. This study aimed to explore the acceptability of introducing internet-based communication and information technologies for patients on a palliative care in-patient unit. METHODS: In the first phase of the Keep in Touch (KIT) project, a diverse group of key informants were consulted regarding their perspectives on web-based communication on in-patient palliative care units. Participants included palliative patients, family members, direct care providers, communication and information technology experts, and institutional administrators. Data was collected through focus groups, interviews and drop-in consultations, and was analyzed for themes, consensus, and major differences across participant groups. RESULTS: Hospitalized palliative patients and their family members described the challenges of keeping in touch with family and friends. Participants identified numerous examples of ways that communication and information technologies could benefit patients' quality of life and care. Patients and family members saw few drawbacks associated with the use of such technology. While generally supportive, direct care providers were concerned that patient requests for assistance in using the technology would place increased demands on their time. Administrators and IT experts recognized issues such as privacy and costs related to offering these technologies throughout an organization and in the larger health care system. CONCLUSIONS: This study affirmed the acceptability of offering internet-based communication and information technologies on palliative care in-patient units. It provides the foundation for trialing these technologies on a palliative in-patient unit. Further study is needed to confirm the feasibility of offering these technologies at the bedside.

Dignity therapy: a feasibility study of elders in long-term care.

OBJECTIVE: The purpose of this study was to assess the feasibility of dignity therapy for the frail elderly. METHOD: Participants were recruited from personal care units contained within a large rehabilitation and long-term care facility in Winnipeg, Manitoba. Two groups of participants were identified; residents who were cognitively able to directly take part in dignity therapy, and residents who, because of cognitive impairment, required that family member(s) take part in dignity therapy on their behalf. Qualitative and quantitative methods were applied in determining responses to dignity therapy from direct participants, proxy participants, and healthcare providers (HCPs). RESULTS: Twelve cognitively intact residents completed dignity therapy; 11 cognitively impaired residents were represented in the study by way of family member proxies. The majority of cognitively intact residents found dignity therapy to be helpful; the majority of proxy participants indicated that dignity therapy would be helpful to them and their families. In both groups, HCPs reported the benefits of dignity therapy in terms of changing the way they perceived the resident, teaching them things about the resident they did not previously know; the vast majority indicated that they would recommend it for other residents and their families. SIGNIFICANCE OF RESULTS: This study introduces evidence that dignity therapy has a role to play among the frail elderly. It also suggests that whether residents take part directly or by way of family proxies, the acquired benefits--and the effects on healthcare staff--make this area one meriting further study.

Learning from dying patients during their final days: life reflections gleaned from dignity therapy.

Dignity therapy is a novel therapeutic approach designed to decrease suffering, enhance quality of life and bolster a sense of dignity for patients approaching death. The benefits of dignity therapy were previously documented in a sample of 100 terminally ill patients. One of the products of dignity therapy is a transcript of the edited therapy session(s). In this qualitative study, 50 of the 100 (17 from Winnipeg, Manitoba, Canada, and 33 from Perth, Australia) dignity therapy transcripts were randomly drawn, and independently coded and analysed by three investigators using a grounded theory approach. The transcripts revealed that dignity therapy serves to provide a safe, therapeutic environment for patients to review the most meaningful aspects of their lives in such a manner that their core values become apparent. The most common values expressed by the patients included 'Family', 'Pleasure', 'Caring', 'A Sense of Accomplishment', 'True Friendship', and 'Rich Experience'. Exemplars of each of these values illustrate the pervasive, defining role of values in our lives. The findings are discussed in terms of values theory, the role of dignity therapy, and consideration of values clarification in clinicians' efforts to enhance the dignity of terminally ill patients.

Interventions to enhance the spiritual aspects of dying.

In recent years, medical and allied health publications have begun to address various topics on spirituality. Scholars have posited numerous definitions of spirituality and wrestled with the notion of spiritual pain and suffering. Researchers have examined the relationship between spirituality and health and explored, among other topics, patients' perceptions of their spiritual needs, particularly at the end of life. This paper summarizes salient evidence pertaining to spirituality, dying patients, their health care providers, and family or informal caregivers. We examine the challenging issue of how to define spirituality, and provide a brief overview of the state of evidence addressing interventions that may enhance or bolster spiritual aspects of dying. There are many pressing questions that need to be addressed within the context of spiritual issues and end-of-life care. Efforts to understand more fully the constructs of spiritual well-being, transcendence, hope, meaning, and dignity, and to correlate them with variables and outcomes such as quality of life, pain control, coping with loss, and acceptance are warranted. Researchers should also frame these issues from both faith-based and secular perspectives, differing professional viewpoints, and in diverse cultural settings. In addition, longitudinal studies will enable patients' changing experiences and needs to be assessed over time. Research addressing spiritual dimensions of personhood offers an opportunity to expand the horizons of contemporary palliative care, thereby decreasing suffering and enhancing the quality of time remaining to those who are nearing death.

The description and evaluation of a longitudinal pilot study of a smoking relapse/reduction intervention for perinatal women.

BACKGROUND: Up to 70% of women who quit smoking while pregnant will relapse during the first postnatal year. In this study, a community-based, ecological approach guided the development and implementation of a smoking cessation intervention for perinatal women. AIMS: The aims of this pilot project were to: (1) develop and implement a community-based intervention to assist women to stop smoking or prevent smoking relapse during the pre- and postnatal periods, (2) provide feedback on participants' perceptions of the helpfulness of the intervention, (3) compare perceptions of the helpfulness of the intervention between women who received the intervention during the prenatal vs. postnatal periods, and (4) identify additional components of the intervention which need to be included in future research. DESIGN/METHODS: Using a participative process and a detailed review of the literature, researchers, health care professionals and women (pregnant or postnatal) developed a multifaceted intervention. The intervention included four core components, which all women received: home visit by the intervention nurse, follow-up telephone call(s), resource package, and letter of congratulations. Additional optional components included: telephone help line, support groups, referrals and other services. Forty-two women who were pregnant or had recently delivered participated. Descriptive and evaluation data were collected from participants using questionnaires and telephone interviews. The research was approved by the university Research Ethics Board. FINDINGS: Participants found the core components of the intervention to be helpful in their smoking cessation goals, particularly the home visit and resource material. The support groups and smoking help line were not used. There were no differences in how helpful the components of the intervention were perceived to be between women who received it in the prenatal or postnatal periods. CONCLUSIONS: Future research is needed to evaluate the effectiveness of the intervention.