Higher levels of unmet support needs in spouses are associated with poorer quality of life - a descriptive cross-sectional study in the context of palliative home care.

Funder: Linnaeus UniversityBACKGROUND: Family caregivers often report having unmet support needs when caring for someone with life-threatening illness. They are at risk for psychological distress, adverse physical symptoms and negatively affected quality of life. This study aims to explore associations between family caregivers' support needs and quality of life when caring for a spouse receiving specialized palliative home care. METHODS: A descriptive cross-sectional design was used: 114 family caregivers completed the Carer Support Needs Assessment Tool (CSNAT) and the Quality of Life in Life-Threatening Illness - Family caregiver version (QOLLTI-F) and 43 of them also answered one open-ended question on thoughts about their situation. Descriptive statistics, multiple linear regression analyses, and qualitative content analysis, were used for analyses. RESULTS: Higher levels of unmet support needs were significantly associated with poorer quality of life. All CSNAT support domains were significantly associated with one or more quality of life domains in QOLLTI-F, with the exception of the QoL domain related to distress about the patient condition. However, family caregivers described in the open-ended question that their life was disrupted by the patient's life-threatening illness and its consequences. Family caregivers reported most the need of more support concerning knowing what to expect in the future, which they also described as worries and concerns about what the illness would mean for them and the patient further on. Lowest QoL was reported in relation to the patient's condition, and the family caregiver's own physical and emotional health. CONCLUSION: With a deeper understanding of the complexities of supporting family caregivers in palliative care, healthcare professionals might help to increase family caregivers' QoL by revealing their problems and concerns. Thus, tailored support is needed

Loved ones within Palliative Care-understanding, strategies and need for support

It is well known that during the palliative process both patient and loved ones have to face, and prepare themselves, for the patient´s approaching death. Their daily life will be marked by the disease, and physical, social, psychological and existential questions will arise. Increased knowledge about being a loved one involved in palliative care could provide important guidance for the professional staff to enabling them to support the loved ones in finding new ways of living after the patient´s death. The aim of the thesis was to increase knowledge of what it can be to be a loved one involved in palliative care from the perspective of understanding what is going on, strategies used and support needed. The studies used both qualitative and quantitative methods, in the form of in-depth interviews and questionnaires with open-ended questions. Descriptive statistics and content analysis were used, in the analysis. The results show that the understanding of loved ones depended on information given in various ways during the disease process. The information could be gained either explicitly from health-care staff or implicitly from everyday conversation between themselves and the patient or throughout the progression of the disease. The loved ones used different types of strategies to cope with the situation and to be able to meet the patient in the current situation. The professional carers opinion was that the more informed and aware the loved ones were about the patient´s disease the more they were able to cope with the situation. Information was helpful both in preparing for and during the bereavement. Need for support after the patient´s death, depended on how they managed the bereavement process, together with the kind of relation they had had with the dead person. The personal network was the most important source of support in contrast to professional support which was mainly needed when the personal network for some reason failed or when the grief became complicated. The professional carers opinion was that they could provide the support the loved ones needed during the patient´s hospital stay but rarely after the patient had died. The healthcare system has to find methods to support the loved ones both during the time of the patient´s illness as well as during the bereavement process, for those who need such support

Challenging conversations with terminally ill patients and their loved ones: Strategies to improve giving information in palliative care

Objective: The aim of the study was to explore the skills and strategies employed by professionals when having difficult conversations to provide information to loved ones as part of palliative care.Method: A qualitative design was chosen with in-depth interviews with nurses, assistant nurses and doctors a Hospital in Sweden and were analysed using content analysis.Results: The interviews produced examples of strategies used by professionals when imparting difficult information to patient and loved ones. The results fell into three areas: ‘Who is giving information’, ‘Structuring the conversation’ and ‘Different ways to convey a difficult message’.Conclusion: Using conversational skills and strategies in combination with a carefully planned structure appeared to facilitate difficult conversations with patients and loved ones. Further research is required, related to the specific circumstances in which the conversation takes place

Using coping strategies are not denial: helping the loved ones to adjust living with a patient with a palliative diagnose.

Background: When a patient receives the diagnosis of an incurable cancer, their loved ones have to face the fact that life will change. Realizing that the time together is with someone who is going to die, loved ones have to cope with the situation.Objective: The objective of this study was to increase the knowledge concerning what forms of coping strategies loved ones apply when a family member is faced with an incurable cancer.Design: The study had a qualitative approach using in-depth interviews as data from a sample of consecutive loved ones. The interviews were audiotaped, transcribed verbatim, and analyzed using a manifest content analysis.Results: The main findings showed that the strategies used by loved ones could be categorized into four different areas: thinking that the death is far off in the future; hoping for an improvement; living in the present; and utilizing the family and personal network. The loved ones used these strategies in order to learn to live with the fact that their spouse had been diagnosed with an incurable illness.Conclusion: The study shows that the manner in which the coping strategies are used is individual and also depends on how loved ones can cope with the concept of a dying person with whom they are very close. When loved ones have a need for support outside their personal network, it is important to understand that this need is directly related to coping strategies and that it is not a result of denial

Demographic and diagnostic data.

Communication about life-threatening disease and palliative care is essential but often experienced as difficult by those concerned and has mainly been studied in terms of its verbal components. Despite the fundamentality of nonverbal communication, its dimensions in care, especially in the communication by patients and their significant others, has not been as extensively examined. Drawing on a secondary qualitative content analysis of data from 23 interviews—15 with patients in specialized palliative home care in Sweden and 8 with their significant others—this study aims at understanding and characterizing how patients verbally express experiences of conveying nonverbal cues about life-threatening disease and its consequences and how their significant others express perceiving these cues. Patients expressed experiences of nonverbal communication in the form of cues conveying meaning about their disease and its consequences, often beyond their control. Whether and how the patients reinforced these cues verbally, depended on individual needs, care for others, and evaluations of relationships. Significant others acknowledged the presence of nonverbal cues and tried to interpret their meaning. Both patients and significant others emphasized the importance of nonverbal cues and actively related to how cues in the form of bodily appearance, aids, objects and acts, serve communicative functions about disease and its consequences. These dimensions of nonverbal communication are characterized as: body talk, extension talk and action talk. This study contributes to an international knowledge base on the complexities of nonverbal communicative aspects in these dimensions and how it affects patients and significant others. Professionals should be aware that dimensions of care, such as prescribed aids, from the patients’ perspective can be perceived as nonverbal cues that might “speak of” disease progression.</div

Public awareness of palliative care in Sweden

OBJECTIVE: The aim of this study was to investigate the awareness of palliative care (PC) in a general Swedish population. DESIGN: We developed an e-survey based on a similar study conducted in Northern Ireland, consisting of 10 questions. Closed questions were primarily analyzed using descriptive statistics. Open questions were subject to inductive qualitative analysis. SUBJECTS: The study utilized a population sample of 7684 persons aged 18-66, of which 2020 responded, stratified by gender, age and region. RESULTS: Most participants reported 'no' ( n = 827, 41%) or 'some' ( n = 863, 43%) awareness of PC. Being female or older were associated with higher levels of awareness, as was a university-level education, working in a healthcare setting and having a friend or family member receiving PC. Most common sources of knowledge were the media, close friends and relatives receiving PC, as well as working in a healthcare setting. Aims of PC were most frequently identified as 'care before death', 'pain relief', 'dignity' and a 'peaceful death'. The preferred place of care and death was one's own home. The main barriers to raising awareness about PC were fear, shame and taboo, along with perceived lack of information and/or personal relevance. The term 'palliative care' was said to be unfamiliar by many. A number of strategies to enhance awareness and access to PC were suggested, largely reflecting the previously identified barriers. CONCLUSIONS: This survey found limited awareness of palliative care in an adult sample of the Swedish general public ≤ 66 years, and points to a more widespread disempowerment surrounding end-of-life issues