Inger Benkel

Family and friends provide most social support for the bereaved

Social support is important in the bereavement period. In this study, the respondents were family members and friends to a patient who had died at a palliative care unit. The aim was to explore wishes and needs for, access to and effects of social support in the bereaved. We found that the grieving person’s wishes for social support from their network and the network also provided most social support. The network consisted of the close family, the origin family, relatives and friend. Support from the professional staff was required when the network was dysfunctional or when the grieving person did not want to burden members of his/her own network. The need for social support from professional staff was most needed close to the death and some time after.

Using Coping Strategies Is Not Denial: Helping Loved Ones Adjust to Living with a Patient with a Palliative Diagnosis

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.

Managing Grief and Relationship Roles Influence Which Forms of Social Support the Bereaved Needs

Social support is important during the bereavement period and influences which form of social support the grieving person needs. This study shows 2 different strategies for coping with grief which also revealed which form of social support the grieving persons needed depend on what they found difficult to manage. The coping strategies are called grief management and involve different strategies and the roles in the relationship with the diseased. Systematically monitoring the bereaved makes it possible to understand the strategies they use in the grieving process and to identify when these strategies are insufficient so professional support can be offered.

Loved ones obtain various information about the progression of the patient's cancer disease which is important for their understanding and preparation.

Being diagnosed with an incurable cancer disease encompasses the transition from the presumption of having a long and healthy life to an earlier than expected death. It is well known that during the last phase of the patients disease both the patient and the loved ones have a great need for information concerning physical, psychological, social, and existential matters. This is in line with the World Health Organization (WHO) definition of palliative care, which emphasizes the importance of providing the best possible quality of life during the progression of the illness and the process of grieving for the patient and the loved ones. Research shows that during the progress of the disease, it is important for the loved ones to have the opportunity to prepare and realize that the patient is in fact going to die, and there will be consequences in their own future life. 6-8 Previous studies have shown that psychological preparation during the disease process is crucial for how the loved ones cope with the grief following their loss. In addition, the level of preparation also influences the form of social support the loved ones may need during the period of bereavement after the patient has died. Various kinds of information are required in order to support the loved ones in their preparation, both regarding understanding what to expect at the time and in the future. However, knowledge is still lacking about how the loved ones actually obtain information about the disease process. This knowledge can guide health care staff regarding the best time and manner for information to be provided during the disease process, so that the loved ones can better understand that death will occur in the near future. ‘‘Loved ones’’ is an expression denoting those who are close to the patient, whether they are spouses, significant others, relatives, adult children, or friends. The aim of the study was to examine how and what kind of information the loved ones obtained about the disease, which supported their understanding, realization, and preparation of the patient’s approaching death. The study is part of a larger study that explores understanding, strategy, and need for support among the loved ones within palliative care. Methods

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.

A person-centred approach in nursing: Validity and reliability of the Carer Support Needs Assessment Tool

PURPOSE The Carer Support Needs Assessment Tool (CSNAT) was developed for use among family caregivers in palliative care for assessment of their support needs. The purpose of this study was to translate and evaluate the validity and reliability of the CSNAT in a sample of Swedish family caregivers and nurses in a palliative care context. METHODS Data for this validation study was collected during 2016 in the context of palliative home care in two larger Swedish cities. The study was conducted in three stages to reach conceptual, semantic, operational and measurement equivalence between the original UK version and the Swedish version. Stage I consisted of translation to Swedish. In Stage II, cognitive interviews were performed with 8 family caregivers and 10 nurses. Data were analyzed based on relevance, clarity and sensitivity. In Stage III, the CSNAT and related self-rating measures (caregiver burden, preparedness for caregiving and quality of life) were completed by 118 family caregivers. Data quality, construct validity and test-retest reliability were evaluated. RESULTS The CSNAT items were considered relevant and useful to identify areas of support needs. The Swedish CSNAT showed sound psychometric properties with satisfactory data quality and few problems with missing data across items (1.8%-6.1%). All items except one correlated as expected (rho>0.3) with caregiver burden, supporting construct validity. All items had satisfactory test-retest reliability (κw=0.45-0.75). CONCLUSIONS This study further adds to the validity of the CSNAT and shows in addition that it is reliable and stable for use among family caregivers in palliative care.

The Shared Experience Help the Bereavement to Flow A Family Support Group Evaluation

When a family member dies, a bereavement period is taking place for all family members. The death of a parent during childhood is a highly stressful event. This study evaluates families’ experiences of family support groups when a parent has died. Families were participate in groups for children, teenagers, young adults, and parents in seven sessions. The same topic which was discussed in all groups. The support groups were evaluated qualitatively and quantitatively. The participants were satisfied with the groups and experienced that the shared experience facilitated bereavement to proceed. The results indicate that families’ experiences is being more open about feelings in their own family. A support group can be one possibility to help the whole family in the bereavement.

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.

Developing organisational ethics in palliative care A three-level approach

Background: Palliative carers constantly face ethical problems. There is lack of organised support for the carers to handle these ethical problems in a consistent way. Within organisational ethics, we find models for moral deliberation and for developing organisational culture; however, they are not combined in a structured way to support carers’ everyday work. Research objective: The aim of this study was to describe ethical problems faced by palliative carers and develop an adapted organisational set of values to support the handling of these problems. Research design: Ethical problems were mapped out using focus groups and content analysis. The organisational culture were developed using normative analysis and focus group methodology within a participatory action research approach. Main participants and research context: A total of 15 registered nurses and 10 assistant nurses at a palliative unit (with 19 patient beds) at a major University Hospital in Sweden. Ethical considerations: The study followed standard ethics guidelines concerning informed consent and confidentiality. Findings: We found six categories of ethical problems (with the main focus on problems relating to the patient’s loved ones) and five categories of organisational obstacles. Based on these findings, we developed a set of values in three levels: a general level, an explanatory level and a level of action strategies. Discussion: The ethical problems found corresponded to problems in other studies with a notable exception, the large focus on patient loved ones. The three-level set of values is a way to handle risks of formulating abstract values not providing guidance in concrete care voiced in other studies. Conclusion: Developing a three-level set of values adapted to the specific ethical problems in a concrete care setting is a first step towards a better handling of ethical problems.

A Qualitative Study of the Experiences of Parents With an Adult Child Who Has a Severe Disease: Existential Questions Will Be Raised:

A prominent existential concept is that elderly parents should naturally become severely ill or die before a younger person does. If the reverse should happen, it may influence the parent’s existential view of life. The aim of this study was to investigate the existential issues during illness time. This was a qualitative study with in-depth interviews and was conducted in a University Hospital in western Sweden. Eleven parents agreed to participate in individual interviews at baseline and 1 year later. The total number of interviews completed was 19. The study identified 5 areas according to an existential perspective: life took the wrong path, the age of the child, difficult to see the child as sick, worrying about the child, and the relationship with the adult child. Existential questions are often present in those circumstances and can be raised in conversations with parents. Existential questions began to arise for the parent when the child was diagnosed with the severe illness. The situation of having a severely ill child caused both fear and anxiety that the worst-case scenario they could imagine, that the child will die, might happen. Further research is required on this rarely investigated subject of having an adult child with a severe disease.