To Örebro University

Objective: The end stage of chronic obstructive pulmonary disease (COPD) is described as prolonged, and the symptom burden for patients with COPD is often high. It progresses slowly over several years and can be punctuated by abrupt exacerbations that sometimes end in sudden death or a recovery of longer or shorter duration. This makes it difficult to identify the critical junctures in order to prognosticate the progress and time of death. Patients with COPD often express a fear that the dying process is going to be difficult. There is a fear that the dyspnea will worsen and lead to death by suffocation. The present article aimed to retrospectively describe the final year of life for patients with advanced COPD with a focus on death and dying from the perspective of relatives.

Method: Interviews were conducted with the relatives of deceased family members who had advanced COPD. In total, 13 interviews were conducted and analyzed by means of content analysis.

Result: All relatives described the patients as having had a peaceful death that did not correspond with the worry expressed earlier by both the patients and themselves. During the final week of life, two different patterns in the progress of the illness trajectory emerged: a temporary improvement where death was unexpected and a continued deterioration where death was inevitable.

Significance of Results: The patients and their relatives lived with uncertainty up until the time of death. Little support for psychosocial and existential needs was available. It is essential for the nurse to create relationships with patients and relatives that enable them to talk about dying and death on their own terms.

The aim of this study was to describe parents' conceptions of the mental health care provided to adult children suffering from mental illness. Data were collected using qualitative research interviews with a purposive sample of sixteen mothers and ten fathers. Phenomenographic analysis was used to identify conceptions and formulate descriptive categories. The first category, questioning the availability of care, describes mental health care as being unequal in terms of accessibility and lacking in continuity. The second category, disapproval of parental exclusion, illustrates conceptions that mental healthcare professionals disregard parents and do not provide them with adequate information. The third category, questioning the quality of care, encompasses conceptions of lack of trust in the professionals' competence, an unsatisfactory environment as well as inadequate cooperation with other healthcare providers and authorities. Positive aspects, such as being seen and confirmed, were mentioned as valuable by the parents.

Background: Health care systems in many countries are moving towards outpatient care in which family members are central in providing care for patients with life-threatening illness. Several studies show that family members report a lack of preparation, knowledge and the ability to handle the caregiver role, and a need for information and psychosocial support.

Aim: The aim was to investigate the effects of a support group programme for family members of patients with life-threatening illness during ongoing palliative care.

Design: A prospective quasi-experimental design, including an intervention group and a comparison group, was used. Settings/participants: A support group programme was offered to family members during ongoing palliative care at three intervention settings: two specialist palliative care units and one haematology unit. A fourth setting, a specialist palliative care unit, was used for comparisons.

Results: Family members taking part in the support group programme significantly increased their perceptions of preparedness for caregiving, competence for caregiving, and rewards of caregiving. Hope, anxiety, depression symptoms and health showed no significant changes.

Conclusions: The intervention, including a support group programme delivered to family members of patients with life-threatening illness during ongoing palliative care, proved to be effective in certain domains of caregiving. No negative outcomes were detected. The results indicate that this intervention could be implemented and delivered to family members during ongoing palliative care.

Aim

The aim of this study was twofold: first, to describe the experience of being the next-of-kin of a person suffering from colorectal cancer (CRC), and second, to describe how a psychoeducational program (PEP) might contribute to the next-of-kin's life experience. Psychosocial interventions for next-of-kin to cancer patients are effective in improving quality of life issues, although there are conflicting results in previous studies. Most studies have evaluated the effects of PEP for mixed cancer groups but there is little knowledge about how next-of-kin to a person treated for CRC describe their experience of life and their experience of participating in a PEP.

Methods

The study used a qualitative descriptive design. Individual, open-ended interviews with each of the 18 next-of-kin, of persons receiving treatment for CRC, who participated in a PEP. Data were analyzed using content analysis.

Results

Based on the experiences described by the next-of-kin to a person treated for CRC, the subtheme; Facing a personal challenge was developed. From their described experiences of participating in a PEP, the subtheme Obtaining New Insights and Perspectives emerged. One main theme was finally identified; Finding a Wider Horizon. The study illuminates the importance of integrating the next-of-kin/family in the colorectal cancer care.

Conclusion

The findings from this study can be used to plan future interventions for next-of-kin to patients with CRC as it offers possibilities to understand the next-of-kin's situation and experience from participating in a PEP.

Research suggests that siblings of individuals with severe mental illness are affected by the situation of their affected sibling and that the health care services seem to partly fail in meeting their needs for support. The aim of this study was therefore to explore how siblings of individuals with a psychotic illness, and who have participated in a support group, experience their situation. Thirteen informants participated in focus group interviews, which were analysed by inductive content analysis. The findings were interpreted in an overall single theme: A lonely life journey bordered with struggle. This theme consists of three categories: facing existential thoughts, facing ambiguity in approach and engagement, and facing disparate attitudes and expectations.

Background: Family members often take on many caring responsibilities, with complex issues and challenges to consider. Feelings of preparedness, competence and reward are identified as concepts that may protect caregiver wellbeing and decrease negative outcomes related to caregiving.

Aim: This study aimed to translate, adapt and psychometrically evaluate the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale in Swedish family members of patients with life threatening illness.

Design: Correlational.

Setting/participants: The study took place in four settings including advanced palliative care. The scales were tested in a sample of 125 family members of persons with life-threatening illness. All three scales were tested in relation to distribution of item and scale scores, missing data patterns, dimensionality, convergent validity and reliability.

Results: The results in this study indicate that the Swedish versions of The Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale are valid, reliable and user-friendly scales. Confirmatory factor analysis showed that the scales were unidimensional and all demonstrated Cronbach’s alpha values of ≥0.9.

Conclusions: As a result of this study it is anticipated that the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale could provide a basis for collaborative research between different countries and make international studies more comparable and generalizable despite differences in language and culture.

Background: Health care systems in many countries are moving towards outpatient care in which family members are central in providing care for patients with life-threatening illness. Several studies show that family members report lack of preparation, knowledge and ability to handle the caregiver role with a need for information and psychosocial support.

Aim: The aim was to investigate effects of a support group programme for family members of patients with life-threatening illness during ongoing palliative care

Design: A prospective quasi-experimental design including an intervention group and a comparison group was used.

Settings/participants: A support group programme was offered to family members of patients with life-threatening illness during ongoing palliative care at three intervention settings, two specialist palliative care units and one haematology unit. A fourth setting, a specialist palliative care unit was used for comparisons.

Results: Family members taking part in the support group programme significantly increased their perceptions of preparedness for caregiving, competence for caregiving and rewards of caregiving. No significant changes were shown for hope, anxiety, depression symptoms or health.

Conclusions: The intervention, including a support group program delivered for family members of persons with life threatening illness during ongoing palliative care proved to be effective in certain domains of caregiving. No negative outcomes were detected. The results indicate that this intervention could be implemented and delivered to family members during ongoing palliative care.

The purpose of this study is to describe the everyday life experiences of fathers of adult children who have various forms of long-term mental illness. Ten fathers were interviewed. Content analysis revealed one main theme: Maintaining a strong façade while balancing on a thin line, and two sub-themes: (1) A constant struggle and (2) A feeling of powerlessness. The fathers demonstrated great engagement and good will to participate in their child's life. A sense of powerlessness and frustration at not having or being allowed freedom of action emerged. Cooperation between children, parents, the care service providers, and the authorities could increase the parents’ abilities to provide adequate support to the child as well as helping them to understand and make the incomprehensible manageable.

Aim: To describe the experience of life the first year after surgery from the perspective of persons treated for colorectal cancer and their partners.

Background: Colorectal cancer is a common cancer form, and treatment can cause unpleasant side effects such as sexual dysfunction and bowel problems. Partners struggle to keep family life normal and provide support. Little is known about couples' experiences a year after treatment for colorectal cancer.

Design: Qualitative descriptive. Methods. Individual semi-structured interviews with 13 persons treated for colorectal cancer and their partners, a total of 26 participants.

Results: One theme was identified in the study; ` Life is back to normal and yet not': participants described living a normal but different life than before. Three subthemes were identified; ` Life has a shadow of death', ` The treated body sets the rules' and ` To share or not share the illness'.

Conclusions: Findings showed that both the patients' and their partners' lives were influenced by uncertainty and the condition of the patient. Attitudes varied towards sharing the illness. It was found that information needs varied both within and between couples. A future challenge to healthcare personnel is the obligation to meet the needs of both patients and their partners on the illness trajectory and recovery after treatment for colorectal cancer.

Relevance to clinical practice: Findings enhance the understanding of the impact of colorectal cancer on both patients and partners. Healthcare personnel need to assess both the patient's and partner's need for information, support and assistance. Support groups could be an effective tool for providing information, communication and support. Future studies are needed to evaluate such groups.

The importance of involving family members in the care of individuals with schizophrenia or other psychotic illnesses has received increasing attention within psychiatric health-care services. However, several studies suggest that family members often experience a lack of involvement. Furthermore, research indicates that family members’ experience of the professional’s approach has bearing on whether they feel involved or not. Thus, the aims of this study were to investigate the level of importance that the family members of individuals with schizophrenia or other psychotic illnesses ascribe to the professionals’ approach, the level of agreement between their experiences and what they consider as important, and aspects they consider to be important with regards to contact with professionals. Seventy family members from various parts of Sweden participated. Data were collected by the Family Involvement and Alienation Questionnaire and open-ended questions. The median level and quartiles were used to describe the distribution, and percentage agreement was analysed. Open-ended questions were analysed by qualitative content analysis. The results reveal that the majority of the participants consider Openness, Confirmation, and Cooperation as important aspects of a professional’s approach. Continuity emerged as an additional aspect. The results show a low level of agreement between the participants’ experience and what they consider as important.