Search

Neurological conditions produce considerable disease burden. To describe quality of life in patients with neurological conditions and informal caregivers receiving postdischarge generic community neurological nursing services, and caregiver burden. A descriptive cross-sectional design was used with researchers administering the WHOQOL-BREF Australian Version questionnaire and Zarit Burden Interview. Most patients and caregivers rated quality of life as 'Good'. The patients' physical, psychological and environment domain scores, and caregivers' physical domain scores, were below norms. Half of the caregivers experienced burden and 42% had risk for depression. A heterogeneous group of patients with neurological conditions had considerable care and support needs for fundamental functioning postdischarge. Quality of life and caregiver burden measures highlight the impact of their circumstances on their health and wellbeing. Research is warranted to determine a comprehensive set of generic needs to guide integrated community nursing services for building patient and caregiver self-management capacity. [ABSTRACT FROM AUTHOR]

Abstract Background Development of interventions that address psychosocial and existential distress in people with motor neurone disease (MND) or that alleviate caregiver burden in MND family carers have often been suggested in the research literature. Dignity therapy, which was developed to reduce psychosocial and existential distress at the end of life, has been shown to benefit people dying of cancer and their families. These results may not be transferable to people with MND. The objectives of this study are to assess the feasibility, acceptability and potential effectiveness of dignity therapy to enhance the end of life experience for people with motor neurone disease and their family carers. Methods/design This is a cross-sectional study utilizing a single treatment group and a pre/post test design. The study population will comprise fifty people diagnosed with MND and their nominated family carers. Primarily quantitative outcomes will be gathered through measures assessed at baseline and at approximately one week after the intervention. Outcomes for participants include hopefulness, spirituality and dignity. Outcomes for family carers include perceived caregiver burden, hopefulness and anxiety/depression. Feedback and satisfaction with the intervention will be gathered through a questionnaire. Discussion This detailed research will explore if dignity therapy has the potential to enhance the end of life experience for people with MND and their family carers, and fill a gap for professionals who are called on to address the spiritual, existential and psychosocial needs of their MND patients and families. Trial registration ACTRN Trial Number: ACTRN12611000410954

Neurological conditions represent leading causes of non‐fatal burden of disease that will consume a large proportion of projected healthcare expenditure. Inconsistent access to integrated healthcare and other services for people with long‐term neurological conditions stresses acute care services. The purpose of this rapid evidence assessment, conducted February–June 2016, was to review the evidence supporting community neurological nursing approaches for patients with neurological conditions post‐discharge from acute care hospitals. CINAHL Plus with Full Text and MEDLINE were searched for English‐language studies published January 2000 to June 2016. Data were extracted using a purpose‐designed protocol. Studies describing community neurological nursing care services post‐discharge for adults with stroke, dementia, Alzheimer's disease, Parkinson's disease, multiple sclerosis or motor neurone disease were included and their quality was assessed. Two qualitative and three quantitative studies were reviewed. Two themes were identified in the narrative summary of findings: (i) continuity of care and self‐management and (ii) variable impact on clinical or impairment outcomes. There was low quality evidence of patient satisfaction, improved patient social activity, depression scores, stroke knowledge and lifestyle modification associated with post‐discharge care by neurological nurses as an intervention. There were few studies and weak evidence supporting the use of neurology‐generalist nurses to promote continuity of care for people with long‐term or progressive, long‐term neurological conditions post‐discharge from acute care hospital. Further research is needed to provide role clarity to facilitate comparative studies and evaluations of the effectiveness of community neurological nursing models of care. [ABSTRACT FROM AUTHOR]

Introduction Dignity therapy is an end-of-life psychological intervention that focuses on the creation of a legacy document to alleviate end-of-life distress. Dignity therapy is based on an empirical model of dignity at the end of life. Research on dignity therapy has been ongoing for over 12 years in 11 countries, which has created a solid empirical base. Objective This article presents a narrative overview of the literature on dignity therapy to provide a comprehensive narrative review and critical synthesis of published research. Method Electronic databases ( PubMed, CINAHL, PsycINFO, and Scopus) were searched using the key terms 'dignity therapy,' 'dignity psychotherapy,' and 'Chochinov' from 2000 to March 2016. Results Thirty-nine publications were included and findings were grouped into the following areas: Efficacy; Feasibility with different study populations; Web-assisted delivery; Impact on families; Cultural studies; Case studies; Themes found in documents; Clinical perspectives; and Implementation studies. Conclusions While dignity therapy is well accepted in most cases, it may not always be effective, therapeutically valid, or practical, and may cause family or cultural frictions. It is recommended that clinicians take into consideration each person's unique circumstances in relation to the current literature before undertaking dignity therapy. Future research is indicated to evaluate dignity therapy with different cultural groups, to investigate the views of recipients of dignity therapy documents, to discover the time and resource commitments required to deliver dignity therapy, to identify who should provide dignity therapy, and to examine the experiences of clinicians who deliver dignity therapy. More research is also needed comparing dignity therapy to other end-of-life interventions. [ABSTRACT FROM AUTHOR]

Background: People with motor neuron disease (MND) face barriers when accessing palliative care. There is a lack of research about how these barriers affect the end-of-life (EOL) and death experiences of people with MND. Aim: This study examined the perceptions of EOL experiences of family carers of people with MND in Western Australia (WA) to identify unmet needs and gaps in EOL support for people with MND and their family carers. Design: Semistructured interviews were conducted with 12 bereaved family carers of people who died from MND in WA. Thematic analysis was used to identify common themes. Results: The themes identified can be summarized into three main areas: accessing support, accessing information, and feeling prepared. Conclusions: The findings indicate that increased access to specialist palliative care services by people with MND is needed to improve EOL experiences. [ABSTRACT FROM AUTHOR]

Background: Interviews with bereaved family carers to examine the end-of-life experience of the deceased are important tools for palliative care researchers, but the ethics of approaching the bereaved when they are grieving and vulnerable is often debated. Objective: The aim of this study was to explore the insights of bereaved family carers about the most appropriate time to be involved in a research interview about the end of life and death of their family member. Methods: This qualitative study used a social constructionist framework. Twenty-two bereaved family carers of people with motor neurone disease (MND) and cancer were interviewed in Western Australia. Results: Most family carers (86%) feel comfortable being interviewed about the death of their family member within the first 5 months of bereavement, with 43% reporting they could be interviewed within weeks after death. Family carers reported that recall would be better earlier in bereavement and felt it may be helpful to them to talk about their experiences earlier. They said bereaved people should be allowed to decide for themselves when to be involved in an interview. Conclusions: These findings indicate that interviews with the bereaved may be most fruitful for researchers and beneficial to family carers when they are allowed to make the choice about timing for themselves, beginning weeks after the death of their family member. [ABSTRACT FROM AUTHOR]

Background Dignity therapy is a brief psychotherapy that has been shown to enhance the end of life experience. Dignity therapy often involves family carers to support patients weakened by illness and family carers are also the usual recipients of the legacy documents created. No research to date has examined the impact of dignity therapy on family carers at the time of the intervention. This study examined the effects of dignity therapy on family carers of people with motor neurone disease (MND). Methods This is a cross-sectional study utilizing a one-group pre-test post- test design with 18 family carers of people diagnosed with MND. Outcomes measured caregiver burden, anxiety, depression, and hopefulness. Acceptability was measured with a questionnaire. Feasibility was assessed by examining family carers' involvement in the therapy sessions, time taken to conduct sessions, and any special accommodations or deviations from the dignity therapy protocol. Results There were no significant pre-test post-test changes on the group level, but there were decreases in anxiety and depression on the individual level. Baseline measures indicate that 50% of family carers had moderate to severe scores for anxiety prior to dignity therapy. MND family carers saw benefits to the person with MND and to themselves after bereavement, but acceptability of dignity therapy at the time of the intervention was mixed with some family carers indicating it was helpful, some indicating it was harmful, and many expressing ambivalence. Dignity therapy involving MND family carers is feasible and the involvement of family carers has minimal impact on the therapy. Conclusion Dignity therapy is not likely to alleviate caregiver burden in MND family carers, but it may have the ability to decrease or moderate anxiety and depression in distressed MND family carers. Dignity therapy is feasible and generally acceptable to MND family carers. Dignity therapists may provide a better experience for family carers when they are aware of acceptance levels and the quality of partner relationships. [ABSTRACT FROM AUTHOR]

Background: Motor neurone disease (MND) practice guidelines suggest developing interventions that will promote hope, meaning, and dignity to alleviate psychological distress, but very little research has been done. This study begins to address this need by exploring the use of dignity therapy with people with MND. Dignity therapy is a brief psychotherapy that promotes hope, meaning and dignity, and enhances the end of life for people with advanced cancer. The aims of this study are to assess the feasibility, acceptability, and potential effectiveness of dignity therapy for people with MND. Methods/design: This cross-sectional feasibility study used a one-group pre-test post-test design with 29 people diagnosed with MND. Study participants completed the following self-report questionnaires: Herth Hope Index, FACIT-sp, Patient Dignity Inventory, ALS Assessment Questionnaire, ALS Cognitive Behavioural Screen, and a demographic and health history questionnaire. Acceptability was measured with a 25-item feedback questionnaire. Feasibility was assessed by examining the length of time taken to complete dignity therapy and how symptoms common in MND affected the intervention. Generalised linear mixed models and reliable change scores were used to analyse the data. Results: There were no significant pre-test post-test changes for hopefulness, spirituality or dignity on the group level, but there were changes in hopefulness on the individual level. The results of the feedback questionnaire indicates dignity therapy is highly acceptable to people with MND, who report benefits similar to those in the international randomised controlled trial on dignity therapy, a population who primarily had end-stage cancer. Benefits include better family relationships, improved sense of self and greater acceptance. Dignity therapy with people with MND is feasible if the therapist can overcome time and communication difficulties. Conclusions: Dignity therapy for people with MND is feasible and acceptable. Further research is warranted to explore its ability to diminish distress. Trial Registration: www.anzctr.org.au ACTRN12611000410954 [ABSTRACT FROM AUTHOR]

The author presents a personal narrative of her experiences of attending a memorial service and creating Dignity Therapy transcript for her colleague, Stuart who passed away because of the motor neuron disease (MND).