Palliative care for infants with life-limiting conditions: integrative review.

BACKGROUND: Infants with life-limiting conditions are a heterogeneous population. Palliative care for infants is delivered in a diverse range of healthcare settings and by interdisciplinary primary healthcare teams, which may not involve specialist palliative care service consultation. OBJECTIVE: To synthesise the literature for how palliative care is delivered for infants aged less than 12 months with life-limiting conditions. METHODS: An integrative review design. MEDLINE, CINAHL, ProQuest, Cochrane, Joanna Briggs Institute and EMBASE were searched for research published in English language, from 2010 to 2022, and peer reviewed. Critical appraisal was completed for 26 patient case series, 9 qualitative, 5 cross-sectional and 1 quality improvement study. Data analysis involved deductive content analysis and narrative approach to summarise the synthesised results. RESULTS: 37 articles met the eligibility for inclusion. Two models of palliative care delivery were examined, demonstrating differences in care received and experiences of families and health professionals. Health professionals reported lack of palliative care education, challenges for delivering palliative care in intensive care settings and barriers to advance care planning including prognostic uncertainty and transitioning to end-of-life care. Families reported positive experiences with specialist palliative care services and challenges engaging in advance care planning discussions. CONCLUSION: There are complex issues surrounding the provision of palliative care for infants. Optimal palliative care should encompass a collaborative and coordinated approach between the primary healthcare teams and specialist palliative care services and prioritisation of palliative care education for nurses and physicians involved in providing palliative care to infants.

Return to valued activities: Survivors' experiences of adaptation and growth after treatment for head and neck cancer.

OBJECTIVE: The objective of this study was to explore the experiences of head and neck cancer (HNC) survivors who returned to valued activities to understand how they reconstruct their lives following HNC diagnosis and treatment. METHODS: A qualitative research approach based on social constructionist theory was used. A total of 21 in-depth semi-structured interviews were conducted with adults diagnosed with any type of HNC in the previous 6 years. Reflexive thematic analysis was used to identify themes. RESULTS: HNC presents a unique trauma following which some survivors navigate paths back to meaningful activities. The experiences of HNC survivors who adapted to life after treatment described internal and external change and development, identified by three themes; Mindfulness; Gratitude; and Adaptation. CONCLUSION: People diagnosed with HNC frequently experience lasting effects and other survivorship issues, however some survivors were able to return to valued activities and recreate a meaningful lifestyle reflecting the possibility of post traumatic growth. This study provides insight into the experiences of head and neck cancer survivors who were able to make meaning and find internal and external growth following treatment. These findings can be used to inform advanced communication skills training for oncology health professionals and psychoeducational courses for people diagnosed with head and neck cancer in the future.

Silenced: Patients' experiences of voicelessness in head and neck cancer.

OBJECTIVES: The objective of this qualitative study was to explore patients' experiences of communicating with health professionals following a diagnosis of head and neck cancer (HNC). METHODS: A qualitative research approach based on social constructionist theory was used. A total of 21 in-depth semi-structured interviews were conducted with people diagnosed with HNC. Thematic analysis was used to identify themes. RESULTS: The experience of losing the capacity for speech was experienced by survivors of HNC as distressing and traumatic. Voicelessness was not just a loss of physical speech, but a holistic experience of silencing. A number of tensions emerged including patients' experiences of losing their voice and then finding different ways to verbally express themselves; in interactions with health professionals there was a tension between abrupt, hurried communication and a slower, more mindful communication style. Sub-themes around communication style emerged where disparities between levels of health literacy were unaddressed, and patients' experienced a lack of empathy. Another tension experienced was between an old style medical model and the ideal of person-centred care and the biopsychosocial model of health. CONCLUSION: Whether HNC patients lose their voice temporarily, have periods of voicelessness, or are able to speak, but feel unheard, the treatment experience is too often one of disempowerment and silencing of their perspectives. PRACTICE IMPLICATIONS: Health professionals are challenged to find creative communication methods, to practice mindful listening, source speech pathology and adaptive technologies, and to facilitate communication that supports patients in expressing their values, preferences and needs.

Mindfulness-Based Compassion Training for Health Professionals Providing End-of-Life Care: Impact, Feasibility, and Acceptability.

Background: Health professionals who care for patients and their families at the end of life (EOL) may experience gratitude, and enhanced spirituality and meaning in life, yet they are also at increased risk of psychological distress, compassion fatigue, and occupational burnout given the stressors they encounter in their work. Objectives: This research evaluated the feasibility and acceptability of a novel six-week mindfulness-based compassion training intervention, which was tailored to health professionals involved in EOL care ("MBCT4HP"), and explored its impact on levels of psychological distress, compassion fatigue, compassion satisfaction, occupational burnout, self-compassion, and mindfulness. Design: We adopted an observational, repeated measures pilot study. Setting/Subjects: Thirty-one health professionals participated. The intervention comprised six, weekly sessions (totaling seven hours) designed to foster compassion for self and others, including formal and informal compassion and mindfulness practices, daily home practice, and a reflective experiential pedagogy. Measurements: Validated outcome measures for anxiety, depression, and stress; compassion satisfaction, compassion fatigue (burnout, secondary traumatic stress); occupational burnout (emotional exhaustion, personal accomplishment, and depersonalization), self-compassion, and mindfulness were administered at baseline, end of intervention, and eight weeks postintervention. The feasibility and acceptability of the intervention was assessed using attendance records, home practice logs, and self-report satisfaction items. Descriptive statistics and Generalized Linear Mixed Models were used to analyze the data. Results: Participants reported that the sessions were useful, relevant, easy to understand, and that they gave them sufficient knowledge to implement the strategies learned. Levels of anxiety, compassion fatigue (burnout only), and emotional exhaustion decreased over time with some decay in effects at follow up, and levels of compassion satisfaction and self-compassion increased with time. Conclusions: The intervention was feasible and acceptable to health professionals involved in EOL care and had a positive impact on levels of anxiety, compassion fatigue (burnout), emotional exhaustion, compassion satisfaction, and self-compassion.

The unmet needs of carers of patients diagnosed with sarcoma: A qualitative study.

OBJECTIVE: Sarcoma is a rare cancer that may result in reduced mobility, social isolation, poorer mental health, and ongoing medical issues for patients. Family carers play a crucial role in supporting patients throughout their sarcoma journey. Despite the aggressive and debilitating nature of the disease, the unmet needs of these carers are yet to be explored. The aim of this study was to explore the unmet needs of carers of patients diagnosed with sarcoma. METHODS: An exploratory qualitative research design with a social constructionist epistemology was used. Participants were carers of patients diagnosed with a sarcoma (n = 33). Semi-structured interviews were conducted with carers of patients who completed treatment for sarcoma and also bereaved carers (BC). Interviews were transcribed verbatim and analysed using thematic analysis. FINDINGS: Four overarching themes were identified: support with medical aspects of caregiving, support for self, needing information about the patient, and financial support. Participants recognised that they needed psychosocial support, however, many were reluctant to access support as they perceived this to be prioritising their own needs instead of the patients'. They also needed more information about the patients' disease and how to navigate the health system. CONCLUSIONS: Family carers for patients with sarcoma have onerous responsibilities that affect their ability to access care for themselves and their family. Providing more holistic patient care and carer-specific information and training could reduce carer burden. Establishing support groups specific to carers and BC of patients diagnosed with sarcoma could provide opportunities for social interaction and psychosocial support.

A systematic review of interventions to reduce psychological distress in pediatric patients receiving radiation therapy.

OBJECTIVE: Radiation therapy (RT) is a cornerstone for management of pediatric cancer. For younger patients, unintended radiation to critical organs is a concern and children need to remain immobile. Distress in children is common so many centres sedate pediatric patients. Children often are unable to remain still, due to anxiety. Interventions to reduce distress could also reduce sedation rates. The objectives of this systematic review were to: review the interventions used to address pediatric RT patients' distress and anxiety and assess their effectiveness. METHODS: A systematic search of qualitative and quantitative studies from 1996 to 2016 was conducted using PRISMA guidelines. Nine articles were identified for inclusion in the final review. These articles were reviewed using a quality rating. RESULTS: Participants included patients 19 years of age or younger, parents and RTs. All were single-site studies. Five studies had a control group, 3 studies had no control group, and 1 study was qualitative. Quality was not high. Six studies reported significant effects. Only one study reported group differences in children's reported anxiety. CONCLUSION: Cognitive behavioural approaches appear to be worth exploring further, as are approaches grounded in child development. Therapeutic play, particularly procedural preparation via play, also seems to be a useful starting point.

A pilot study of routine screening for distress by a nurse and psychologist in an outpatient haematological oncology clinic.

AIM: To explore the: 1) prevalence of distress, type of problems experienced by haematological patients, and referrals for supportive care; 2) effect of demographic and clinical variables on distress, and 3) effect on the time of health professionals conducting the screening in the ambulatory chemotherapy setting. METHODS: Participants completed the National Comprehensive Cancer Network Distress Thermometer and Problem List and had a follow-up screening discussion with a health professional. RESULTS: Of 68 participants, 40% reported significant distress (≥4) on the Distress Thermometer (mean 3.2, SD 2.4). All patients reported physical problems and 72% reported emotional problems-the major contributors to distress and to time spent with the health professional. Distress was unrelated to age, gender or cancer type. Patients were less likely to have significant distress at the end of treatment than at the beginning (OR=0.15, 95% CI: 0.03; 0.72,). Forty patients (59%) were referred to supportive services. The psychologist spent less time with patients compared to the nurse (18 vs 48min, p<0.001). The more emotional problems reported, the greater the time spent with the patient (rs=0.34, p=0.009). CONCLUSIONS: Nurses can appropriately screen for distress and address significant distress reported by haematology patients undergoing chemotherapy without over burdening the nurse or patient.

The fundamental paradox in the grief literature: a critical reflection.

A key theme in the bereavement literature is the recognition that every grief experience is unique and dependent on many variables, such as the circumstances of the death, characteristics of the bereaved individual, their relationship with the deceased, the provision and availability of support, and a myriad of sociocultural factors. Concurrently, there are corresponding efforts to define "normal" grief and delineate it from "complicated" grief experiences. The discord between these two potentially opposing statements remains a paradox evident within the three major tensions within the thanatological literature--the dominance of grief theories, the medicalization of grief, and the efficacy of grief interventions. Three recommendations for moving beyond the paradox are discussed--the provision of improved grief education for service providers, the bereaved, and the wider community; the conduct of research that emphasizes the context of grief and is relevant to service provision; and the examination of current grief interventions.