Neurological patient and informal caregiver quality of life, and caregiver burden: A cross-sectional study of postdischarge community neurological nursing recipients.

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.

Dignity therapy online: Piloting an online psychosocial intervention for people with terminal illness.

OBJECTIVE: Dignity therapy is a life review intervention shown to reduce distress and enhance the quality of life for people with a terminal illness and their families. Dignity therapy is not widely used in clinical practice because it is time and cost prohibitive. This pilot study examined the feasibility and acceptability of dignity therapy delivered through therapist-supported web-based delivery to reduce costs, increase time efficiency, and promote access to treatment. METHODS: This study employed a one-group pre-test post-test design to pilot methods. Australian adults diagnosed with a terminal illness with a prognosis of six months or less were recruited for the study. The primary outcome measure was a Participant Feedback Questionnaire used in previous face-to-face dignity therapy studies. Data regarding therapist time and details about final documents were recorded. RESULTS: Six people were recruited; four chose to complete the intervention via videoconference and two chose email. Participants reported high levels of acceptability and efficacy comparable to face-to-face delivery; meanwhile therapist time was about 40% less and legacy documents were longer. Participants described dignity therapy online as convenient, but technological issues may create challenges. CONCLUSIONS: Online delivery of dignity therapy is feasible and acceptable, reduces therapist time and clinical cost, and appears to reach people who would not otherwise receive the therapy. Dignity therapy via email may have the greatest potential to reduce time and cost barriers. This pilot study demonstrates a need for further research to determine the full benefits of online delivery of dignity therapy.

Rapid evidence assessment of approaches to community neurological nursing care for people with neurological conditions post-discharge from acute care hospital.

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.

The End-of-Life Experiences of People with Motor Neuron Disease: Family Carers' Perspectives.

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.

Conducting research interviews with bereaved family carers: when do we ask?

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.

Feasibility, acceptability, and potential effectiveness of dignity therapy for people with motor neurone disease.

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.

Feasibility, acceptability and potential effectiveness of dignity therapy for family carers of people with motor neurone disease.

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. TRIAL REGISTRATION: ANZCTR Trial Number: ACTRN12611000410954.

A 10-year literature review of family caregiving for motor neurone disease: moving from caregiver burden studies to palliative care interventions.

BACKGROUND: There is growing awareness that different terminal diseases translate into different family caregiver experiences, and the palliative and supportive care needs of these families are both similar and unique. Family members caring for people with motor neurone disease may experience exceptional strain due to the usually rapid and progressive nature of this terminal illness. AIM: The purpose of this review is to synthesize contemporary research and provide a comprehensive summary of findings relevant to motor neurone disease family caregivers, as well as highlight some of the suggested interventions to alleviate burden and improve quality of life for this group. DESIGN: We conducted a comprehensive review of empirical research on family caregiving for people with motor neurone disease in peer-reviewed journals published in English, January 2000-April 2011. Fifty-nine studies met the inclusion criteria. RESULTS: This comprehensive literature review was consistent with previous research documenting the substantial burden and distress experienced by motor neurone disease family caregivers and revealed important points in the trajectory of care that have the potential for negative effects. The diagnosis experience, assisted ventilation, cognitive changes and end-of-life decision making create challenges within a short time. This review has also implicated the need for improvements in access to palliative care services and highlighted the absence of interventions to improve care. CONCLUSIONS: Caregiver burden and quality-of-life studies on motor neurone disease family caregivers have so far dominated the research landscape .The focus needs to be on developing interventions that provide direct practical and psychosocial supports for motor neurone disease family caregivers.

Is dignity therapy feasible to enhance the end of life experience for people with motor neurone disease and their family carers?

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.