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.
Aim The aim of this study was to explore how nurses can support patients who are crying in a palliative home care context.
In palliative care the nurse has a central role in the team whose duty it is to create a sense of security and trust, as well as to give comfort and support the patients. The nurse's responsibility is to identify different needs of the patients for support and develop a relationship with them. Patients may express their pain, anxiety, fear and suffering by crying. No studies have been found which focus on how nurses can support patients who are crying in different ways and crying for different reasons.
A qualitative explorative study was performed. Semi-structured interviews were held with eight nurses aged 32-63 years (Median 40) working in Swedish palliative home care. The data were analysed using Qualitative Content analysis. Findings It was reported that the nurse should meet and confirm the patient during different types of crying episodes and should also be able to alternate between being close and physically touching the in such close contact with the patients, the nurse can provide emotional support by showing empathy, merely being present and letting the patients cry as much as they want. When the crying finally stops, the nurse can support the person by speaking with them, showing sensitivity, humility and respect for the patient's wishes. A few examples of the patients' need for information or practical support emerged. The nurse can emotionally support the person who is crying by just being present, confirming, showing empathy, offering a chance to talk and showing respect for their individual needs and the different ways they may cry.
In the WHO's definition of palliative care, social support plays an important part. When a person is dying, social issues regarding the present and future wellbeing of his/her family will often be of great concern. Social aspects of palliation can be divided into two major areas--social counselling and psycho-social work. The first concerns help to maintain an income and to establish sufficient help to enable the dying person and his/her family to live as well as possible. The second involves help to deal with the new and difficult situation for both the dying person and his/her family.
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
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.
Meta-analyses of randomised controlled studies show that intensive follow-up programmes after radical surgery for colorectal cancer have a more positive effect on total survival than do less intensive programmes, but the ideal programme has not yet been found. It appears that monitoring with carcinoembryonal antigen (CEA) and some kind of visualisation of the liver is a way forward, but we do not know how often it should be done. Colonoscopy should be offered every five years to look for metachronous cancer; patients with HNPCC should have a colonoscopy done even more often.