An incurable cancer is a threat to life itself. This study focused on how native-born Swedes, who define themselves as nonreligious, actually reflect and act when they try to create helpful strategies in the presence of their own impending deaths and how the strategies serve their purposes. Twenty patients were interviewed in depth. The patients were enrolled in an advanced hospital-based home care team. The interviews were taped, transcribed and analyzed with a qualitative, hermeneutic interpretative method. The informants' efforts to develop useful strategies to restrain death could be symbolized as a cognitive and emotional pendulum, swinging between the extremes of life and death. During the swings of the pendulum, the informants used every means available: their own resources, other people, animals, nature, a transcendent power, hope, imagination and magical thinking. They strove to find factors that fitted their conceptual system and supported their inner balance and structure, all to keep death at a discreet distance and preserve their links to life. These links were togetherness, involvement, hope and continuance, and they served as a shield against hurtful feelings connected to their impending death. The new knowledge about how strategies in the presence of one's own impending death can develop and be used is perhaps the most novel and clinically relevant contribution of this study.
The purpose of this study was to describe people's experiences of being dependent on others for care in their final stage of life, as well as what they felt made their experience of being dependent easier or more difficult. The phenomenological-hermeneutical method was chosen, where data collection consisted of open-ended interviews with nine people undergoing palliative care at a hospice unit or at home. The meaning of being care dependent is described via the following themes: changed relationship with oneself and with others, striving to adapt oneself to the situation, obstacles, and opportunities along the way while dependent. The result is described as an effort, a journey from independence to moments where it was possible to rest and recuperate while struggling with care dependency. Nursing staff require knowledge and understanding of experiences with care dependency to make life easier for people during increasing dependency in the final stage of life.
This study explored the experience of hope for informal caregivers of palliative patients. Interviews were conducted with 10 caregivers living with and providing care to a palliative patient. The interview data were analyzed using grounded theory qualitative methods. "Eroding hope" was their main concern--a result of bad days, negative messages, and experiences with the health care system. The participants dealt with eroding hope by "hanging on to hope." Hanging on to hope had four subprocesses: a) doing what you have to do, b) living in the moment, c) staying positive, and d) writing your own story. The support of friends, family, and health care professionals, and spiritually connecting with something bigger and stronger were subprocesses. These findings have application for informal caregivers providing palliative care at home, as a basis for assessment and interventions. Health care professionals need to recognize and value the experience of hope for the informal caregivers of palliative patients.
Many terminally ill patients are given the choice to die at home. This study identified determinants of home death among patients receiving palliative home care. Health information was collected using the interRAI palliative care assessment tool. The sample included health information from 536 patients receiving home health care from one community care access centre in Ontario, Canada. Patients who died at home were more likely to be functionally impaired and less likely to live alone. The patients' wish to die at home and the family's ability to cope were strong determinants of home death. This study suggests that the presence of a supportive family that is able to work with the health care team to implement a plan of care is important to the patients' ability to die at home. This study highlights the need to treat the patient and the caregiver(s) as a unit of care.
The goal of this study was to examine the impact of hospice palliative care work on volunteers' lives. In-depth interviews were conducted with 23 direct-patient care volunteers. More than half of the volunteers became involved in hospice palliative care because of their own experiences with family members and/or friends who have died. Most of the volunteers reported that they were different now or had changed in some way since they have been volunteering (e.g., they had grown in some way, have learned how to keep things in perspective). In addition, most of the volunteers felt that their outlook on life had changed since they started volunteering (e.g., they were more accepting of death, and they learned the importance of living one day at a time). Volunteers reported doing a number of different things to prevent compassion fatigue or burnout (e.g., reading a book, listening to music, talking to others, and taking time off from volunteering). Most of the volunteers said that they would tell anyone who might be thinking of volunteering in hospice palliative care that it is a very rewarding activity and/or that they should try it. Finally, many of the volunteers offered suggestions for doing things differently in their programs.
Comment In: Am J Hosp Palliat Care. 2008 Feb-Mar;25(1):74-518292485
OBJECTIVE: The purpose of this study was to evaluate the psychometric properties of the Herth Hope Index (HHI) in a representative sample of the Norwegian population. METHODS: The HHI-N was administered to 4000 people randomly selected from the Norwegian population. 1893 questionnaires were usable, yielding a response rate of 48.5%. RESULTS: The internal consistency of the HHI-N, estimated by Cronbach's alpha, was 0.81. Factor analysis resulted in a two-factor solution, which explained 38% of the variance. The correlation between hope and overall quality of life was 0.48 (p
Comment In: Palliat Support Care. 2004 Sep;2(3):229-3016594407
Results from pilot studies indicate that palliative cancer patients report increased well-being and less fatigue after physical activity. This study aimed to explore how palliative cancer patients experienced physical activity. A qualitative design with semi-structured interviews was used. Eleven palliative cancer patients over 18 years old with different diagnoses and Eastern Cooperative Oncology Group Scale performance status levels of between 1 and 3 were interviewed. Four main themes emerged: routines of everyday life, less fatigue, professional guidance, and hope. The first theme comprised two categories: something to do, and being together with others in a similar situation. The theme professional guidance also comprised two categories: the physiotherapist as tutor, and the physiotherapist as motivator. Some cancer patients in palliative care who participated in physical activity experienced less fatigue and enhanced energy. Physical activity helps to bring structure to everyday life and gives a feeling of hope for the future.
A Swedish widowhood study revealed that four out of ten widows regarded the pre-loss period more stressful than the post-loss. The present investigation of close relatives to patients dying from cancer (using interviews and the Anticipatory Grief Scale) found that preparatory grief involves much emotional stress, as intense preoccupation with the dying, longing for his/her former personality, loneliness, tearfulness, cognitive dysfunction, irritability, anger and social withdrawal, and a need to talk. Psychological status was bad one by every fifth. However, the relatives mostly stated adjustment and ability to mobilize strength to cope with the situation. The results suggest development of support and guiding programs also for the anticipatory period.
Discussion about a dignified death has almost exclusively been applied to palliative care and people dying of cancer. As populations are getting older in the western world and living with chronic illnesses affecting their everyday lives, it is relevant to broaden the definition of palliative care to include other groups of people. The aim of the study was to explore the views on dignity at the end of life of 12 elderly people living in two nursing homes in Sweden. A hermeneutic approach was used to interpret the material, which was gathered during semi-structured interviews. A total of 39 interviews were transcribed. The analysis revealed three themes: (1) the unrecognizable body; (2) fragility and dependency; and (3) inner strength and a sense of coherence.
The aim of this study was to describe family members' experiences of participation in a support group intervention during ongoing palliative home care. Four taped-recorded focus group interviews were conducted (in total, 13 persons) and a questionnaire was completed by 19 of 22 possible family members. The participants experienced increased perception of support and knowledge, and would recommend that a person in a similar situation join a support group. Categories that emerged in the qualitative content analysis concerned "reasons for support group participation", "group composition contributed to group cohesion", "experience and sensitivity of group leader was a catalyst", "meaningful dialogue helped to solve everyday problems", "sense of cohesion increased effectiveness of the group", and "group sessions and post-session reflection increased perception of inner strength". Support groups for family members seem to be a valuable contribution during ongoing palliative home care. The findings are discussed in relation to recruitment into and ending of support groups.