"Being an informal caregiver - strengthening resources": mixed methods evaluation of a psychoeducational intervention supporting informal caregivers in palliative care.

BACKGROUND: Informal caregivers are key support for patients with progressive incurable diseases. However, their own needs often remain unmet. Therefore, we developed, manualised and implemented the intervention "Being an informal caregiver - strengthening resources" aiming to support and empower informal caregivers by addressing relevant information-related, physical, psychological and social needs. METHODS: In this pilot study, we evaluated the acceptance and experiences with this psychoeducational intervention. The study was conducted over two years (2019-2021). Informal caregivers were recruited from the University Medical Centre Hamburg-Eppendorf and the metropolitan region of Hamburg, Germany. The intervention was aimed at adult persons who identified themselves as an informal caregiver to an adult patient with a progressive incurable cancer and non-cancer disease. For the evaluation we used a mixed methods approach, combining a longitudinal questionnaire survey (pre-intervention, after each module, 3-months follow-up) and semi-structured interviews post-intervention. Quantitative data were analysed using descriptive statistics and a paired t-Test, interviews were analysed based on the qualitative content analysis according to Mayring. Results were triangulated using a convergent triangulation design. RESULTS: Of 31 informal caregivers who received the intervention, 25 returned the follow-up questionnaire and 20 informal caregivers were interviewed. Triangulated results showed a high satisfaction with the implementation of the intervention. Of a broad range of subjective benefits, gaining knowledge, self-awareness and self-efficacy were most apparent. Informal caregivers reported improved preparedness, awareness of own needs as well as confidence regarding handling own emotions and interacting with the ill person. However, implementing the learned skills into daily life can be challenging due to internal and external factors. Motivations and challenges for participating as well as potential for improvement were identified. CONCLUSIONS: This pilot study showed an overall positive evaluation and several subjective benefits of the psychoeducational intervention "Being an informal caregiver - strengthening resources". Further research is needed to measure the efficacy of this intervention on informal caregivers' outcomes. Therefore, a multicentre randomized prospective study is planned.

Looking back: Identifying supportive care and unmet needs of parents of children receiving specialist paediatric palliative care from the bereavement perspective.

BACKGROUND: This study examined care needs and utilisation of psychosocial support services among parents of children who had received specialist paediatric palliative care, as well as the relationship between need fulfilment and grief. Possible differences between parents of children who died of cancer versus a non-cancer disease were explored. METHODS: This exploratory study, conducted in two specialist paediatric palliative care facilities, included parents who had lost a child within a period of 0.5 to 8 years before this investigation. From the bereavement perspective, parents reported their needs during paediatric palliative care using the Family Inventory of Needs - Peadiatric II (FIN-PED II). Utilisation of psychosocial support services during paediatric palliative care and after the child's death, as well as potential barriers to accessing services were assessed. Grief symptoms were measured using the Inventory of Complicated Grief - German Version (ICG-D). RESULTS: Overall, 56 of 157 approached parents participated in the study. Mean time interval after the child's death was 3.2 years. Of the 17 FIN-PED II needs, 13 needs were reported to be very/extremely important to more than 75% of the parents each. Highest ranked needs related to asking questions at any time (100%), sincere care for the child (100%), and information about changes in the child's condition (98%). The highest ranked unmet needs related to hope (61%), interactions with siblings (41-42%), and trust in the health care system (39%). Comparisons showed no significant differences between parents whose child died of cancer (n = 18) versus a non-cancer disease (n = 38). During paediatric palliative care, 61% of the parents had accessed at least one psychosocial support service and 84% had done so after the child's death. The most prominent barriers for accessing services were sufficient informal support (38%), no subjective need (23%), and lack of time (20%). Overall, 52% of the parents showed noticeable symptoms for complicated grief (ICG-D > 25). A higher level of grief symptoms significantly correlated with a lower fulfilment of the need to say goodbye to the child (p = .042) with a medium correlational effect. CONCLUSIONS: Our findings may help to guide health care professionals in their assessment of parental needs and provision of support to parents during paediatric palliative care.

[Support for and involvement of family caregivers in Comprehensive Cancer Center - an Assessment of the Palliative Care Working Group within the network of Comprehensive Cancer Center funded by the German Cancer Aid]. / Mitbetreuung und Einbeziehung von Angehörigen in Comprehensive Cancer Centern ­ eine Erhebung der AG Palliativmedizin der von der Deutschen Krebshilfe geförderten Onkologischen Spitzenzentren.

BACKGROUND: According to current oncological guidelines, early integration of specialist palliative care (SPC) represents standard cancer care supporting not only the patients, but also their family caregivers. Data on the actual implementation in daily oncology practice in Germany are lacking. METHODS: The Palliative Care Working Group of the network of Comprehensive Cancer Centers certified by the German Cancer Aid (CCC) assessed the implementation of measures for family caregiver support and involvement within the CCC/within SPC in the CCC/local outside the CCC in all 17 CCC locations. RESULTS: In the CCC/in SPC psycho-oncological (100 %/94 %), social (94 %/100 %) and spiritual counselling of family caregivers (94 % each) as well as support for children with parental cancer (88 %/100 %) and information materials for family caregivers (88 % each) are well established. Training on nursing skills (77 %/94 %) and family conferences (59 %/88 %) are established more frequently within SPC than in the rest of the CCC. SOPs are rather rare (23 %/18 %) as well as screenings for family caregiver needs (0/24 %). Bereavement or self-help groups are with 82 % each more frequent locally outside the CCC. Psycho-oncological and social counselling as well as support for children with parental cancer were scored as most important (94 % each). For SPC, training on nursing skills and information materials were rated equally (94 % each). SOPs were rated as very/extremely important in 47 %/41 % and routine screening for family caregiver in 53 %/65 %. CONCLUSION: In correspondence to their importance, psychosocial and spiritual counselling and support for children with parental cancer are well implemented in CCC. In SPC, training on nursing skills and family conferences are also well implemented. SOPs for family caregiver support and involvement as well as routine screenings for family caregiver needs have to be implemented urgently in the CCC.