Non-pharmacological interventions feasible in the nursing scope of practice for pain relief in palliative care patients: a systematic review.

Background: Palliative care patients desire more symptom management interventions that are complementary to their medical treatment. Within the multi-professional team, nurses could help support pain management with non-pharmacological interventions feasible for their practice and adaptable to palliative care patients' needs. Objectives: The objective was to identify non-pharmacological interventions feasible in the nursing scope of practice affecting pain in palliative care patients. Design: A systematic review. Data sources and methods: A defined search strategy was used in PubMed, CINAHL, PsycINFO, and Embase. Search results were screened double-blinded. Methodological quality was double-appraised with the Joanna Briggs Institute Critical Appraisal Tools. Data were extracted from selected studies and the findings were summarized. The methodological quality, quantity of studies evaluating the same intervention, and consistency in the findings were synthesized in a best-evidence synthesis to rank evidence as strong, moderate, limited, mixed, or insufficient. Results: Out of 2385 articles, 22 studies highlighted non-pharmacological interventions in the nursing scope of practice. Interventions using massage therapy and virtual reality demonstrated most evidentiary support for pain management, while art therapy lacked sufficient evidence. Mindful breathing intervention showed no significant reduction in pain. Hypnosis, progressive muscle-relaxation-interactive-guided imagery, cognitive-behavioral audiotapes, wrapped warm footbath, reflexology, and music therapy exhibited promising results in pain reduction, whereas mindfulness-based stress reduction program, aromatherapy, and aroma-massage therapy did not. Conclusion: Despite not all studies reaching significant changes in pain scores, non-pharmacological interventions can be clinically relevant to palliative care patients. Its use should be discussed for its potential value and nurses to be trained for safe practice. Methodologically rigorous research for non-pharmacological interventions in nursing scope of practice for pain relief in palliative care patients is necessary. Trial registration: The protocol for this study is registered in the International Prospective Register of Systematic Review (PROSPERO registration number: CRD42020196781).

Better spiritual support for people living with early stage dementia: Developing the diamond conversation model.

BACKGROUND: People with early-stage dementia could benefit greatly from on-going spiritual support. However, health care professionals working in dementia care often do not have a clear idea of what such support might entail. There is a lack of tools that can help professionals provide such support. The Diamond conversation model used in palliative care could provide such a support. Aims: To develop the Diamond model for early-stage dementia so that professionals can provide better spiritual support. METHODS: Participatory research was conducted. Reflective interviews with chaplains, case managers and health psychologists identified frequently occurring existential and spiritual issues of clients and family members. A core participatory group consisting of chaplains, a psychologist and a researcher further analysed these issues thematically and co-developed the Diamond model for early stage dementia over three co-creation sessions. Researchers with Diamond model expertise provided feedback to the core participatory group in between these sessions based on the session output. FINDINGS: Central existential and spiritual issues were found to be: self-confidence and -worth, adaptability and capacity, security and loss, burden and enrichment of memory and faith and meaning. The five polarities of the Diamond model were found helpful to understand tensions surrounding these issues. Specific tensions were identified between maintaining a self and being valued, finding direction in what to do and a way to bear changes in ability, a strong need for attachment and letting go of past ways to relate to one another, the renewed intensity of long term memories and decline of the short term ones and surrendering to one's life situation and wanting certainty and meaning. CONCLUSIONS: The newly developed Diamond model for people with early-stage dementia offers a valuable framework to help professionals provide conversational support. More research needs to be done to further test and develop the model in practice.

Barriers to the spiritual care of parents taking care of their child with a life-limiting condition at home.

The changes that parents face when caring for a child with a life-limiting condition at home can affect them on a spiritual level. Yet, indications remain that parents do not feel supported when dealing with spiritual issues related to caring for a severely ill child. This paper explores, from the perspectives of bereaved parents, chaplains, grief counselors, and primary health care providers, the barriers to supporting the spiritual needs of parents. We conducted a qualitative focus group study from a constructivist point with chaplains/grief counselors, primary care professionals, and bereaved parents. All groups participated in two consecutive focus group sessions. Data were thematically analyzed. Six chaplains/grief counselors, 6 care professionals, and 5 parents participated. We identified six barriers: (1) There were difficulties in identifying and communicating spiritual care needs. (2) The action-oriented approach to health care hinders the identification of spiritual care needs. (3) There is an existing prejudice that spiritual care needs are by nature confrontational or difficult to address. (4) Spiritual support is not structurally embedded in palliative care. (5) There is a lack of knowledge and misconceptions about existing support. (6) Seeking out spiritual support is seen as too demanding. CONCLUSION:  Parents of children with life-limiting conditions face existential challenges. However, care needs are often not identified, and existing support is not recognized as such. The main challenge is to provide care professionals and parents with the tools and terminology that suit existing care needs. WHAT IS KNOWN: • Spiritual care needs are an important aspect of pediatric palliative care. • Parents of children with life-limiting conditions feel unsupported when dealing with spiritual questions. WHAT IS NEW: • Parents and professionals mention barriers that hinder spiritual support for parents. • There is a disconnect between existing support and the care needs that parents have.

The spiritual dimension of parenting a child with a life-limiting or life-threatening condition: A mixed-methods systematic review.

BACKGROUND: Spirituality refers to the dynamic dimension of human life that relates to the way that persons experience meaning, purpose, and transcendence. The complex task of parenting a child with a life-limiting condition may raise existential questions, which are easily overlooked by healthcare professionals. AIM: We explored how the spiritual dimension becomes manifest in parents of children in pediatric palliative care. DESIGN: A mixed-methods systematic review was conducted, registered in Prospero (2021 CRD42021285318). DATA SOURCES: PubMed, CINAHL, Embase, PsycInfo, and Cochrane were searched for articles published between January 1, 2015 and January 1, 2023. We included original empirical studies that reported on spirituality of parents of seriously ill children, from parents' perspectives. RESULTS: Sixty-three studies were included: 22 North-American, 19 Asian, 13 European, 9 other. Studies varied in defining spirituality. We identified five different aspects of spirituality: religion, hope, parental identity, personal development, and feeling connected with others. All aspects could function as source of spirituality or cause of spiritual concern. Sources of spirituality helped parents to give meaning to their experiences and made them feel supported. However, parents also reported struggling with spiritual concerns. Several parents highlighted their need for professional support. CONCLUSIONS: Although studies vary in defining spirituality, reports on spirituality focus on how parents connect to their faith, others, and themselves as parents. Healthcare professionals can support parents by paying attention to the spiritual process parents are going through. More research is needed into how healthcare professionals can support parents of seriously ill children in this process.

Use of preventive medication and supplements in general practice in patients in their last year of life: a Retrospective cohort study.

BACKGROUND: Several preventive medications and supplements become inappropriate in the last phase of life due to increased risk of adverse events caused by changed pharmacokinetics, drug-drug interactions, and changed care goals. Information on these preventive medication and supplements use in patients with a life-limiting illness in the home-care setting is limited. The primary aim of this study was to assess the use of four different groups of preventive drugs and supplements, which are inappropriate in adult patients with a life-limiting illness, living at home in the last year of life. The secondary aims were to assess reasons for discontinuing these drugs as documented in the general practitioners' patient file and whether these reasons affected the time between medication discontinuation and death. METHODS: We performed a retrospective cohort study using the routine primary care database of the Julius General Practitioners' Network of the University Medical Centre Utrecht, a database consisting of routine care data from GPs from the city of Utrecht and its vicinity. Patients in the homecare setting with a life-limiting illness, diagnosed at least one year before death, were included. Descriptive analyses were used to describe the study population and the frequency of starting, using, and discontinuing medication and supplements in the last year of life. RESULTS: A total of 458 of 666 included patients (69%) used at least one preventive drug in the last year of life. Vitamins were used by 36% of the patients, followed with 35% using cholesterol-lowering medication, 24% using calcium supplements and 9% using bisphosphonates. Bisphosphonates were discontinued by 70% of the users, calcium supplements by 61%, vitamins by 56% and cholesterol-lowering medication by 48% of the users, with a median interval between day of discontinuation and death of 119, 60, 110 and, 65 days, respectively. The median time between medication or supplement discontinuation and death was longest in patients with side effects and who had medication reviews. CONCLUSION: Many patients in their last phase of life in the home-care setting use inappropriate medication and supplements. Timely medication review may contribute to optimise medication use in the last year of life.

The Content Validity of the Items Related to the Social and Spiritual Dimensions of the Utrecht Symptom Diary-4 Dimensional From a Patient's Perspective: A Qualitative Study.

CONTEXT: In palliative care, caregivers often lack words and competences to discuss patients' needs in social and spiritual dimensions. The Utrecht Symptom Diary-4 Dimensional (USD-4D) is an instrument that can be used to monitor symptoms and needs in the physical, psychological, social, and spiritual dimensions and to optimize communication between patients and caregivers. OBJECTIVE: To assess the content validity of the USD-4D items related to the social and spiritual dimensions from a patient's perspective, measured in terms of comprehensibility, relevance, and comprehensiveness. METHODS: An explorative qualitative study was conducted using in-depth semistructured interviews and thematic analysis. Twelve participants (male N = 7, 53-87 years old) with an estimated life expectancy of less than one year were recruited in two home care services: a general hospital and a hospice. RESULTS: The instructions, items, and response options were comprehensible for almost all participants. The meaning that was provided to the items was expressed in themes: maintaining personal identity and autonomy, resilience, letting go, perceived balance in one's life, and death and afterlife. This corresponds with the intended meaning. The items were relevant at some points in time. Not all participants had needs for personal care during the interviews. Participants found the USD-4D comprehensive, no key concepts related to the social or spiritual dimensions appeared to be missing. CONCLUSIONS: The USD-4D constitutes a content valid PROM from the patient's perspective. The items support patients in identifying needs in the social and spiritual dimensions and in the conversation to further explore these needs.

What do Future Hospice Patients Expect of Hospice Care: Expectations of Patients in the Palliative Phase Who Might be in Need of Hospice Care in the Future: A Qualitative Exploration.

INTRODUCTION: Hospice care (HC) in the Netherlands is available for patients with life expectancies <3 months. Little is known about expectations of patients who might be in need of HC. This study aims to gain insight into expectations of patients regarding HC in order to ameliorate HC to become driven by patient needs. DESIGN: A generic qualitative study, using semistructured interviews and thematic analysis, is performed in the Netherlands from January to June 2018. A purposeful sample of 13 participants was drawn. RESULTS: Participants expected hospice admission only when the burden became unbearable and a home death cannot be reached. Participants expected a homely atmosphere, where one can continue the life lived at home as much as possible. Participants supposed empathic professional caregivers, capable of providing appropriate care. The general practitioner is expected to stay involved in the care process due to the mutual trust. Medical and daily care are required to be provided by competent professionals, where volunteers are expected to provide supportive care. All caregivers are supposed to provide a listening ear and "being there" for participants. Social care and spiritual care are generally projected to be private matters, unless it is requested. CONCLUSIONS: Patients in the palliative phase who might be in need of HC have specific expectations. Perceptions of HC in the public domain should be nuanced in response to these expectations, and information provision on HC should be improved. Then, expectations could be met to make HC more driven by patient needs and future oriented.

From concept to practice, is multidimensional care the leading principle in hospice care? An exploratory mixed method study.

BACKGROUND: Hospice care (HC) aims to optimise the quality of life of patients and their families by relief and prevention of multidimensional suffering. The aim of this study is to gain insight into multidimensional care (MC) provided to hospice inpatients by a multiprofessional team (MT) and identify facilitators, to ameliorate multidimensional HC. METHODS: This exploratory mixed-method study with a sequential quantitative-qualitative design was conducted from January to December 2015. First a quantitative study of 36 patient records (12 hospices, 3 patient records/hospice) was performed. The outcomes were MC, clinical reasoning and assessment tools. Second, MC was qualitatively explored using semistructured focus group interviews with multiprofessional hospice teams. Both methods had equal priority and were integrated during analysis. RESULTS: The physical dimension was most prevalent in daily care, reflecting the patients' primary expressed priority at admission and the nurses' and physicians' primary focus. The psychological, social and spiritual dimensions were less frequently described. Assessment tools were used systematically by 4/12 hospices. Facilitators identified were interdisciplinary collaboration, implemented methods of clinical reasoning and structures. CONCLUSIONS: MC is not always verifiable in patient records; however, it is experienced by hospice professionals. The level of MC varied between hospices. The use of assessment tools and a stepped skills approach for spiritual care are recommended and multidimensional assessment tools should be developed. Leadership and commitment of all members of the MT is needed to establish the integration of multidimensional symptom management and interdisciplinary collaboration as preconditions for integrated multidimensional HC.