| Authors and Country | Aim or Motivation for the Study | Design and Sample | Main Findings | Category | Grade of Classification K=Qualitative Studies (n=12) DS=Descriptive Studies (Quantitative n=5) Grade I= High Grade II= Medium Grade III= Low Quality |
|---|---|---|---|---|---|
| Adelbratt, Strang (2000) Sweden | To explore to what extent patients and their next of kin experience death anxiety, and how these experiences are expressed | Qualitative 20 patients with brain tumours and 15 next of kin Interviews were analyzed with content and context analysis | Six categories emerged concerning patients; (1) emotional reactions that could be related to death anxiety (2) existential fear (3) contradictions; (4) trigger situations (5) coping strategies (6) new values for life. Besides these categories, a further category emerged; experiences characteristic of the next of kin. | Response to life close to death | KI |
| Albinsson, Strang (2003) Sweden | To focus on issues of freedom/responsibility, existential isolation, death, and issues of meaning/meaninglessness. | Qualitative 20 family members of people with severe/ late stage dementia. In-depth interviews were analyzed with a hermeneutic approach. | To take responsibility was generally perceived as rewarding, but in some cases it was more a matter of duty with elements of guilt and obligation. Positive aspects of responsibility and the future involved passing on the patient's lifework. | Response to life close to death Beyond the presence of death | K II |
| Arnaert, Gabos et al. (2010) Canada | Relatives play a key role in the daily support and care of cancer patients. This role, however, can negatively affect relatives physically, psychologically, emotionally, and spiritually, challenging their health and well-being. Consequently, this could inhibit relatives abilities to continue in their roles as caregivers. | Qualitative intervention study 8 relatives of people diagnosed with cancer stage III and IV. Semi structured interviews to explore the experiences of attending a Skills for Healing Retreat Weekend. Analyzed with content analysis using the constant comparative method | Bringing people together to partake in discussions and activities fostered a sense of community among the participants. The retreat had enduring effects, contributing to relatives ongoing processes of healing as well as providing them with strategies for coping in their roles as caregivers. | Support when death is near | KII |
| Axelsson, Sjden (1998) Sweden | To gather knowledge about the quality of life both of terminally ill cancer patients and their spouses. | Quantitative Using Assessment of Quality of life at the End of Life (AQEL) 37 incurably ill cancer patients and their spouses, receiving support from a hospital-based palliative service | Spouses were more anxious than patients. The least-optimal items at the end of life for spouses were: ability to leave the patient unattended, need for assistance with hygiene/dressing and anxiety. Spouses found that meaningfulness was the item with the strongest correlation to global quality of life. | Response to life close to death Beyond the presence of death | DSII |
| Benzein,Saveman (2008) Sweden | To describe couples' experiences of participating in nurse-initiated health-promoting conversations about hope and suffering during home-based palliative care. | Qualitative intervention study 6 couples (6 spouses caring for a dying relative with cancer) participated in a health promotion conversation. Semi-structured interviews analyzed with its content. | Talking with nurses about existential issues such as hope and suffering made couples feel that they were part of a trustful relationship, and that it was a healing experience. | Support when death is near | K II |
| Cronfalk et al. (2009) Sweden | To explore relatives' experiences of receiving soft tissue massage as a support supplement while caring for a dying family member at home. | Qualitative intervention study 19 relatives of people who were dying or had severe illness. Semi-structured interviews analyzed with content analysis | Soft tissue massage gave a feeling of being cared for, energized the body and peace of mind. The overarching theme was 'inner power, physical strength and existential well-being in their daily lives'. | Support when death is near | K I |
| Hasson-Ohayon, Goldzweig et al. (2009) Israel | The current study examines the effect of perceived support from different agents (spouse, family, friends, religionspirituality) on psychological distress experienced by women with advanced breast cancer and their male spouses. | Quantitative 150 couples (women with advanced breast cancer and their spouses) completed the Cancer Perceived Agent of Support Questionnaire and the Brief Symptom Inventory Scale analyzed with descriptive statistics. | Spouses reported a lower level of support provided from family and friends. Spouses were more depressed and anxious than patients. Perceived support contributed significantly to the explanations of global psychological distress, depression and anxiety. Religious-based support was found to contribute negatively to the psychological distress.. | Response to life close to death Support when death is near | DSI |
| Hebert et al. (2008) USA | To determine what questions family caregivers want to discuss with health care providers (HCPs) in order to prepare for the death of a loved one. | Qualitative 33 current and bereaved caregivers of terminally ill patients (cancer, cardiovascular disease, COPD/pneumonia, cirrhosis, dementia, multiple illnesses). Ethnographic interviews and focus groups analyzed using standard methods. | Caregivers had a wide spectrum of questions to discuss with HPCs, and were medical, practical, psycho-social, or religious/spiritual in nature. Barriers to asking questions were feeling overwhelmed, "not knowing what to ask," the perception that HCPs were untrust-worthy, and worries about being perceived as "ignorant". | Support when death is near | KI |
| Hebert et al (2009) USA | To determine the factors that family caregivers believe are important to preparing for death and bereavement | Qualitative 33 family caregivers (bereaved or current) of terminally ill patients (cancer, cardiovascular disease, COPD/pneumonia, cirrhosis, dementia, multiple illness). Focus groups and ethnographic interviews analyzed using the constant comparative method. | Caregivers reported medical,practical, psychosocial, and religious/spiritual uncertainty. They often needed more than prognostic information in order to prepare for bereavement. Communication was used to manage uncertainty. Good communication included tangible, reliable information, combined with relationship-centered care from health care providers. | Support when death is near | KI |
| Lin,Tsao (2004) Taiwan | This study focuses on the terminally ill patients stay in a palliative care unit as a time to educate family caregivers and thereby improve the quality of continuing homecare after discharge. | Quantitative 137 caregivers of terminal cancer patients answered questionnaires (90, 65.7 analyzed with descriptive statistics. percent was completed) analyzed with descriptive statistics. | Information is needed among family caregivers who stay in the palliative care units to prepare them to provide hospice homecare after discharge. They needed specific information about the disease itself - this was highly important, less important was spiritual and religious information. | Response to life close to death Beyond the presence of death | DSI |
| Milberg, Strang (2003) Sweden | To describe and interpret the construct of meaningfulness in next of kin of cancer patients who are in advanced palliative homecare | Qualitative 19 next of kin of dying cancer patients. Interviews analyzed with a hermeneutic approach | Elements as retaining everyday life, commitment, hope, comfort and action, facilitated meaningfulness and were highly important for creating a perception of self-transcendence and for feeling that everything was done as well as possible | Response to life close to death | K II |
| Milberg et al. (2004) Sweden | To describe what characterize such experiences and the meaning of them to next of kin of cancer patients in advanced palliative home care and to make quantifications. | Quantitative Cross-sectional survey Text responses were analyzed with quantitative and qualitative content analysis 233 next of kin to diseased patients (response rate 72%) | Thirty-six percent of respondents stated that they had experienced powerlessness and/or helplessness every day or several times per week, during the palliative home care period. | Support when death is near | DSI |
| Rosenbaum et al. (2006) USA | To illuminate how existential factors may underlie some of the psychological benefits of family support, we explain one aspect of existential coping - symbolic immortality - and describe ways in which existential and social support factors work together during a Life Tape (LT). | Qualitative intervention study 35 patients with cancer and their families Videotaped interviews | Few interventions have been developed to help families support patients in dealing with fears of death and dying. The Life Tape Project (LTP) brings families closer together, increases communication, and acts as an existential intervention. | Response to life close to death | K III |
| Sand, Strang (2006) Sweden | To focus on the emotions, perceptions, and experiences of existential isolation in palliative patients with cancer and their families | Qualitative 20 patients (early or late palliative phase) and 20 family members Semi-structured interviews analyzed with existential hermeneutics | The data revealed experiences of existential loneliness with impending death as a primary source. Changes in one's own body and mood gave rise to feelings of loneliness. | Support when death is near | K I |
| Strang, Strang et al. (2001) Sweden | To describe the opinions of nurses, patients and next-of-kin on existential support and how this is prioritized. | Qualitative 20 patients with brain tumour (grade II-IV), 16 family members and 16 nurses Semi-structured interviews analyzed with phenomenography | Patients and family members were satisfied with the medical and physical treatment, but not with the existential support. | Support when death is near | K I |
| Syrn, Saveman et al. (2006) Sweden | To illuminate the way of being a family when one family member is in the midst of living and dying | Qualitative 5 families (N=48) each containing one family member with cancer. Narrative interviews were analyzed according to Giorgi | Dialectic and dynamic processes in constant motion within and between continually being in affinity-being in loneliness, being in power-being in helplessness, and being in continuity-being in disruption. | Response to life close to death Beyond the presence of death | K I |
| Tsigaroppoulos et al (2009) Greece | The aim was to survey and record the various problems faced by those who care for cancer patients at home. | Quantitative 76 family caregivers of people with terminal cancer The Problems and Needs in Palliative Care questionnaire- caregiver form (PNPC-c) was used analyzed with observational statistical methods | The most frequent problems were: anxiety regarding the patients future (61.8 %), troublesome symptoms such as pain (54 %), increased economic burden - financial difficulty (51.3 %), problems with patients feeding (50 %), unhappiness or depression (48.7 %), emotional upset (47.4 %), worsening of the patients behavior and personality (38.2 %), difficulty establishing a positive attitude regarding their current status (34.2%), transport to hospital (32.9 %), assistance from the wider family circle (25%). | Response to life close to death Beyond the presence of death | DS II |