Sacred Memories: Creative Art Therapy for Children in Grief

<p>This paper explores the creative opportunities children might have to attend to their emotions and feelings following the death of a parent, grandparent or close friend. It presents the position that often children are left out of the process of caring for an adult when they are terminally ill and that has long term psychological implications. It also suggests that this has antecedents for the white New Zealand culture that were noted historically. Hospice palliative care services in New Zealand identify the need to be proactive in their holistic care for the family when a person is dying and this care must include the family which invariably includes children. In this research the author describes a personal journey that has shaped her current work as a hospice practice manager. She has chosen to highlight a neglected aspect in services in New Zealand. The writer explores literature in psychological aspects of removing children from the dying room, creative therapies and the importance of sacred memories for the living child to be enfolded in through their life. The need to create memory that will embrace the child as a cloak enfolds them in their crisis stimulated the writer to offer a text in the personal narrative form. This text is presented in this form to enable other clinicians to access their own memories as survivors of grief in their own families. Through enabling children and family to explore the importance of relating in the palliative phase of a person’s life journey it is suggested that doors open that build good memories for the survivors. I regard my specific form of interest as pursuing the idea of building memory creative ‘corners’ and fun experiences for children at my work. The reasons why such an experience would be beneficial now and in the future for children and their families will be the focus for conducting my literature research. Children were important in the final days of her father’s life. He directed the family to accept the roles he saw would be theirs. Memories became their treasures.</p>

Sacred Memories: Creative Art Therapy for Children in Grief

<p>This paper explores the creative opportunities children might have to attend to their emotions and feelings following the death of a parent, grandparent or close friend. It presents the position that often children are left out of the process of caring for an adult when they are terminally ill and that has long term psychological implications. It also suggests that this has antecedents for the white New Zealand culture that were noted historically. Hospice palliative care services in New Zealand identify the need to be proactive in their holistic care for the family when a person is dying and this care must include the family which invariably includes children. In this research the author describes a personal journey that has shaped her current work as a hospice practice manager. She has chosen to highlight a neglected aspect in services in New Zealand. The writer explores literature in psychological aspects of removing children from the dying room, creative therapies and the importance of sacred memories for the living child to be enfolded in through their life. The need to create memory that will embrace the child as a cloak enfolds them in their crisis stimulated the writer to offer a text in the personal narrative form. This text is presented in this form to enable other clinicians to access their own memories as survivors of grief in their own families. Through enabling children and family to explore the importance of relating in the palliative phase of a person’s life journey it is suggested that doors open that build good memories for the survivors. I regard my specific form of interest as pursuing the idea of building memory creative ‘corners’ and fun experiences for children at my work. The reasons why such an experience would be beneficial now and in the future for children and their families will be the focus for conducting my literature research. Children were important in the final days of her father’s life. He directed the family to accept the roles he saw would be theirs. Memories became their treasures.</p>

Home care nurses more positive about the palliative care that is provided and their own competence than hospital nurses: a nationwide survey

Background People often prefer to stay at home until the end of life, but hospital admissions are quite common. In previous research bereaved relatives were found to be less positive about palliative care in hospital. However, it was not known how the content and quality of palliative care differ between home care and hospitals from the perspectives of hospital nurses and home care nurses and how palliative care in these settings could be improved. Methods A survey was held among hospital and home care nurses, recruited from a nationwide Nursing Staff Panel and through open calls on social media and in an online newsletter. The pre-structured online survey included questions on the palliative care provided, the quality of this care and the respondent’s perceived competence in providing palliative care. The questionnaire was completed by 229 home care nurses and 106 hospital nurses. Results Most nurses provided palliative care in the physical and psychological domains, fewer provided care in the social and spiritual domains. A higher percentage of home care nurses stated that they provided care in these domains than hospital nurses. Overall, 70% of the nurses rated the quality of palliative care as very good to excellent. This percentage was higher among home care nurses (76.4%) than hospital nurses (59.4%). Moreover, a higher percentage of home care nurses (94.4%) stated they felt competent to a great extent to provide palliative care compared to hospital nurses (84.7%). Competencies regarding the physical domain were perceived as better compared to the competencies concerning the other domains. The nurses recommended paying more attention to inter-professional collaboration and communication, timely identification of the palliative phase and advance care planning, and more time available for palliative care patients. Conclusion Although the quality of palliative care was rated as very good to excellent by nurses, improvements can still be made, particularly regarding palliative care in hospitals. Although patients often prefer to die at home rather than in hospital, still a considerable number of people do die in hospital; therefore hospital nurses must also be trained and be able to provide high-quality palliative care.

Health-related quality of life in patients with colorectal cancer in the palliative phase: a systematic review and meta-analysis

Background The occurrence of colorectal cancer has doubled over the last 50 years and many people are living with the disease in the palliative phase. Therefore, it is important that healthcare personnel have knowledge about the patient’s health-related quality of life (HRQoL). The aim of this review is to investigate how HRQoL is reported by means of different measures for patients in the palliative phase of colorectal cancer and examine which sociodemographic and clinical factors are associated with the mean scores reported for HRQoL. Method A systematic review and meta-analysis using forest plots in STATA were conducted. The databases MEDLINE, CINAHL, Embase, Amed, and SveMed+ were used for the systematic searches with combinations of terms for colorectal cancer, the palliative phase and HRQoL. The Cochrane handbook and the PRISMA checklist from 2009 were utilised. Results In total, 710 articles were identified. Eleven quantitative studies met the inclusion criteria and six were included in the meta-analysis. Five of the 11 studies had a longitudinal design, while the other six had a cross-sectional design. The meta-analyzes shows that the average HRQoL in palliative phase was 62.9 (56.8–69.0) 15D was 0.76 (0.73–0.79), EQ-5D was 0.67 (0.62–0.73), and VAS was 64.1 (53.7–74.4). Multiple sociodemographic and clinical variables were associated with HRQoL and a higher prevalence of common cancer symptoms were reported than gastrointestinal symptoms. Conclusion This systematic review revealed that patients with colorectal cancer report low HRQoL. Furthermore, it shows that what affects HRQoL is complicated, including multiple clinical and sociodemographic variables. This underlines the need for further research. To ensure the best possible care, it is important that all healthcare professionals have easy access to knowledge about HRQoL in patients with colorectal cancer, and what impacts it in the last phase of life.

“No One Can Tell Me How Parkinson’s Disease Will Unfold”: A Mixed Methods Case Study on Palliative Care for People with Parkinson’s Disease and Their Family Caregivers

Background: Palliative care for persons with Parkinson’s disease (PD) is developing. However, little is known about the experiences of patients with PD in the palliative phase and of their family caregivers. Objective: To explore needs of patients with PD in the palliative phase and of their family caregivers. Methods: A mixed methods case study design. Health care professionals included patients for whom the answer on the question “Would you be surprised if this patient died in the next 12 months?” was negative. At baseline, and after six and twelve months, we conducted semi-structured interviews with patients and caregivers. Participants completed questionnaires on quality of life, disease burden, caregiver burden, grief, and positive aspects of caregiving. We analyzed quantitative data using descriptive statistics, while we used thematic analysis for qualitative data. Results: Ten patients and eight family caregivers participated, of whom five patients died during the study period. While the quantitative data reflected a moderate disease burden, the qualitative findings indicated a higher disease burden. Longitudinal results showed small differences and changes in time. Patients reported a diverse range of symptoms, such as fatigue, immobility, cognitive changes, and hallucinations, which had a tremendous impact on their lives. Nevertheless, they rated their overall quality of life as moderate to positive. Family caregivers gradually learned to cope with difficult situations such delirium, fluctuations in functioning and hallucinations. They had great expertise in caring for the person with PD but did not automatically share this with health care professionals. Patients sensed a lack of time to discuss their complex needs with clinicians. Furthermore, palliative care was rarely discussed, and none of these patients had been referred to specialist palliative care services. Conclusion: Patients with PD experienced many difficulties in daily living. Patients seems to adapt to living with PD as they rated their quality of life as moderate to positive. Family caregivers became experts in the care for their loved one, but often learned on their own. An early implementation of the palliative care approach can be beneficial in addressing the needs of patients with PD and their family caregivers.

Speech and language therapy in palliative care

Palliative care is an emerging specialty within the field of speech and language therapy. The discipline is currently under-represented both in specialist services and research. Many patients in the palliative phase suffer problems with swallowing (dysphagia) and communication, the core domains of speech and language therapy practice. This chapter provides an overview of difficulties encountered in these domains by people with life-limiting conditions together with common approaches to assessment and management. Assessment and management should be person-centred, integrated into multidisciplinary care, and seek to maintain function using minimal intervention for maximum gain. More research is needed to inform appropriately integrated, person-centred models of speech and language therapy provision that enable difficulties with communication and swallowing to be addressed proactively alongside other symptoms and care needs. Difficulties in these domains are currently under-identified and undertreated in many cases.

Haematological symptoms

The management of symptomatic anaemia, minor bleeding, and other rarer haematological symptoms in the palliative phase illustrates very well the challenging decisions that face professionals who are working with dying children. On the one hand, modern medical interventions have the capacity to relieve some of the symptoms that haematological abnormalities can cause. On the other hand, the interventions themselves carry morbidity and can cause not only symptoms related to physical reactions, but also often emotional and psychological issues related to otherwise avoidable hospital attendance. The ethical issues involved in subjecting a child—whose voice is often unheard—to treatments just because they are available should also be carefully considered. The best clinical decision can only be made by considering the needs of the individual child and their family, giving appropriate weight to the risks and potential benefits of giving an intervention, both physical and otherwise, and the risks and potential benefits of withholding it. In this respect, management of haematological symptoms is typical of thoughtful and skilled childhood palliative care in general.

Toward a socio-spiritual approach? A mixed-methods systematic review on the social and spiritual needs of patients in the palliative phase of their illness

Background: Patients express a variety of needs, some of which are labeled social and spiritual. Without an in-depth exploration of patients’ expressions of these needs, it is difficult to differentiate between them and allocate appropriate healthcare interventions. Aim: To gain insight into the social and spiritual needs of patients with a life-limiting illness and the distinction between these needs, as found in the research literature. Design: A mixed-methods systematic review and meta-aggregation were conducted following the Joanna Briggs Institute (JBI) approach to qualitative synthesis and the PALETTE framework and were reported according to the PRISMA statement. This review was registered in PROSPERO (CRD42019133571). Data sources: The search was conducted in PubMed, EMBASE, CINAHL, Scopus, and PsycInfo. Eligible studies reported social and spiritual needs from the patients’ perspective and were published between January 1st 2008 and October 2020. The quality of evidence was assessed using JBI Critical Appraisal Tools. Results: Thirty-four studies (19 qualitative, 1 mixed-methods, and 14 quantitative) were included. The five synthesized findings encompassing social and spiritual needs were: being autonomous, being connected, finding and having meaning, having a positive outlook, and dealing with dying and death. Conclusion: What literature labels as social and spiritual needs shows great similarities and overlap. Instead of distinguishing social from spiritual needs based on patients’ linguistic expressions, needs should always be explored in-depth. We propose a socio-spiritual approach that honors and preserves the multidimensionality of patients’ needs and enables interdisciplinary teamwork to allocate patient-tailored care.