Brenda Bentley

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.

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

BackgroundDignity 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).MethodsThis 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.ResultsThere 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.ConclusionDignity 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 registrationANZCTR Trial Number: ACTRN12611000410954

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

BackgroundDevelopment 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/designThis 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.DiscussionThis 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 registrationACTRN Trial Number: ACTRN12611000410954

A Narrative Review of Dignity Therapy Research

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 persons 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.

It takes the time that it takes.

It was five days before my first Christmas in Perth, Australia, and our family had begun to arrive the night before. As the rest of household slept, I quickly threw on a skirt and tank top and left to attend the memorial service for one of my study participants, a 57-year old Anglican minister who had died from motor neurone disease (MND). Though I feared I would be late, I could see people milling about in the shaded church courtyard as I pulled up and parked. Walking in, I didn’t know anyone except Stuart’s wife Grace and the minister, who had stopped in one day for coffee as we had been doing our work creating Stuart’s Dignity Therapy transcript. Because Dignity Therapy involves the creation of a manuscript about important memories and messages that are to be left behind after death, I had heard a lot about Stuart’s three children and their families, his parents and in-laws, his brothers and sister, friends, and other important people who appeared in the narrative of Stuart’s life, but I felt a stranger at this gathering and headed quickly to the empty seats at the back of the church. Grace came from nowhere and intercepted me in the middle of the aisle, giving me a long hug. Letting her tears flow, she said, ‘‘Thank you so much for being here. It means so much to me and it would mean so much to Stuart.’’ I opened my mouth and nothing came out. I stammered under the weight of the loss, the memories, Grace’s gratitude, and my inexperience. This was the first memorial service I attended where my relationship was professional, and I had hoped I would have something more comforting and eloquent to offer than a gaping mouth but I didn’t, and it was okay. I had first met Stuart Jordan in July. He had telephoned the day before I left for vacation and, sounding as though his tongue was three times too big for his mouth, asked if he and his wife could take part in my PhD research on Dignity Therapy with people who have motor neurone disease. I explained that I was going on vacation the next day, and we made an appointment for two days after my return. I hastily sent a confirmation letter to ‘‘Stuart Jones,’’ as I had misunderstood his name to be. Within hours, I was on a plane to visit family and friends in California, a place I had left just nine months earlier to pursue this research and a place where motor neuron disease is known as amyotrophic lateral sclerosis or Lou Gehrig’s disease. My first day back in Perth, jet-lagged and dressed in jeans and a t-shirt, I received a call from Stuart’s wife. ‘‘Where are you?’’ she asked. ‘‘We have an appointment.’’ I pulled up the confirmation letter on my computer and saw I had written the wrong date. I also noticed a glaring typo in my congratulations regarding the news of their first grandchild. ‘‘So many mistakes. How are they ever going to put their trust in me? ’’ I thought to myself. ‘‘I made a mistake with my calendar, but can I come now?’’ I asked Grace apologetically. Our first meeting lasted over an hour. Their small house located across from a train station was neat and tidy. Jolly, the dog, greeted me at the door. A stereo and shelves housing a large record collection dominated the small living room. Grace offered me a cappuccino from an impressive steaming machine in the kitchen, and Stuart had an espresso. Stuart was firmly in the grip of MND. He could not use his left hand. Eating, standing, and walking were an extraordinary effort. He slurred his words and it was very difficult to understand him, but he easily forgave my mistakes and imperfections and opened himself up. When I asked him to rate as a problem ‘‘Feeling like I am no longer who I was,’’ he burst out crying. Stuart and I met six more times over the next ten weeks and also emailed his document back and forth between us. During this time his health quickly declined. He had his PEG feeding tube inserted. He and Grace went on a trip, which turned out to be a disaster when he was ill the entire time and required several emergency room admissions. He began using a VPAP breathing machine to improve his oxygen levels. He was twice admitted and then released from the palliative care unit at a local hospital. As time went on, I began to wonder if telling his story was helping to keep him alive. Each time I thought we were done, he wanted to include more text or more photos. When I thought we couldn’t possibly add any more, he came up with the idea for a ‘‘timeline,’’ which meant we had more work to do. While working with Stuart, I often wondered if I was doing Dignity Therapy wrong. These thoughts did not occur to me as often with other participants, who more easily stayed within the flexible boundaries of the study protocol and the Dignity Therapy manual. Mostly, I was concerned because I was spending more time with Stuart than I had with other study participants, and it was taking longer than the others to finish. When I asked the creator of Dignity Therapy, Dr. Harvey Max Chochinov, about my concern in one of our supervisory phone calls, he acknowledged it was taking longer than usual, but stressed the importance of providing psychosocial support to people with terminal illness. Finally, in

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, Alzheimers disease, Parkinsons 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.

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

Acknowledgement The authors thank Samar Aoun and Harvey Max Chochinov for their assistance with the project, for securing the funding for this study, and acknowledge their contribution to the conception and design of the project. We are grateful for the support of the Motor Neurone Disease Association of Western Australia. Finally, we wish to thank all of the people who took part in this study.