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.
It is in accompanying the dying that palliative care nurses say they find meaning in their work. To further explore this phenomenon, consideration of coping strategies is proposed. The main objective of this correlational study was to describe the association between coping strategies (using a revised version of the COPE scale (Carver et al, 1999)), emotional outcomes (distress and vigour; profile of mood states (POMS)), and spiritual quality of life (using the Functional Assessment of Chronic Illness Therapy - Spiritual Wellbeing Scale (FACIT-sp)). A sample of 120 nurses providing palliative care in acute care hospitals and the community in Quebec was included. Positive reinterpretation (beta=.27; p
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.
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
The aim of this study was to explore and understand the lived experience of older people living alone and suffering from incurable cancer in rural Norway.
Narrative interviews were conducted with five older people with incurable cancer (three women and two men, aged 71-79), receiving outpatient and life-prolonging chemotherapy and living alone in their homes in rural areas. A phenomenological hermeneutical approach was used to interpret the meaning of the lived experience.
Four main themes were found: enduring by keeping hope alive, becoming aware that you are on your own, living up to expectations of being a good patient and being at risk of losing one's identity and value. Enduring this situation means struggling with terminal illness and facing death in a brave manner, and replacing former ways of living. The process of providing treatment may threaten dignity and cause additional distress.
These results show a complex and comprehensive situation where physical symptoms and emotions are interwoven. Further the results describe how the ways of suffering caused by the manner in which care is delivered, suffering related to the cancer disease and existential suffering, may increase each other's impact. The social and rural context calls for special attention as the patients may lack recourses to gain sufficient care. Their comfort depends to a large extent on the health professionals' sensitivity.
An increasing number of older people in Western countries are living with incurable cancer, receiving palliative care from specialized healthcare contexts. The aim of our article was to understand how they experience the existential meaning-making function in daily living from a life-span perspective.
Some 21 participants (12 men and 9 women), aged 70-88, were interviewed in a semistructured framework. They were recruited from somatic hospitals in southeastern Norway. We applied the model of selective optimization with compensation (SOC) from life-span developmental psychology in a deductive manner to explore the participants' life-oriented adaptive strategies. A meaning component was added to the SOC model.
The participants experienced the existential meaning-making function on two levels. On a superordinate level, it was an important component for interpreting and coordinating the adaptive strategies of SOC for reaching the most important goals in daily living. The existential meaning-making framework provided for a comprehensive understanding of resilience, allowing for both restoration and growth components to be identified. The second level was related to strategy, in that the existential meaning-making function was involved in a complex interaction with behavioral resources and resilience, leading to continuation of goals and more realistic goal adjustments. A few experienced existential meaning-making dysfunction.
The modified SOC model was seen as applicable for palliative care in specialized healthcare contexts. Employing the existential meaning-making framework with its complementary understanding of resilience as growth potential to the SOC model's restoration potential can help older people to identify how they make meaning and how this influences their adaptation process to being incurably sick.
AIM AND OBJECTIVES: This article explores relatives' experiences of receiving soft tissue massage as a support supplement while caring for a dying family member at home. BACKGROUND: In palliative home care, relatives play an important role as carers to seriously ill and dying family members. To improve their quality of life, different support strategies are of importance. Complementary methods, such as soft tissue massage have become an appreciated supplement for these patients. However, only few studies focus on relatives experiences of receiving soft tissue massage as a supplemental support. DESIGN: Qualitative design METHOD: Nineteen relatives received soft tissue massage (hand or foot) nine times (25 minutes) in their homes. Open-ended semi-structured tape-recorded interviews were conducted once per relative after the nine times of massage, using qualitative content analysis. RESULTS: Soft tissue massage gave the relatives' feelings of 'being cared for', 'body vitality' and 'peace of mind'. For a while, they put worries of daily life aside as they just experienced 'being'. During massage, it became apparent that body and mind is constituted of an indestructible completeness. The overarching theme was 'inner power, physical strength and existential well-being in their daily lives'. CONCLUSION: All relatives experienced soft tissue massage positively, although they were under considerable stress. Soft tissue massage could be an option to comfort and support relatives in palliative home care. RELEVANCE TO CLINICAL PRACTICE: In palliative nursing care, soft tissue massage could present a worthy supplement in supporting caring relatives.
A minority of terminally ill patients achieve a peaceful death. Many factors, including existential distress, contribute to the emotional disquiet of patients. This study focuses on the reactions of terminally ill cancer patients to questions concerning existential issues within the themes of meaning, relations, autonomy, guilt, dignity, and communication. The results of this study indicate that patients experience a number of problems dealing with existential issues, consider these questions important, and wish to be able to discuss these types of questions with someone.