A pilot evaluation of an 8-week mindfulness-based stress reduction program for people with pre-symptomatic Huntington's disease.

People with Huntington's disease (HD) face difficult emotional and practical challenges throughout their illness, including in the pre-symptomatic stage. There are, however, extremely limited psychosocial interventions adapted to or researched for HD. We adapted and piloted an 8-week mindfulness-based stress reduction (MBSR) program in people with pre-symptomatic HD to determine if the program (i) was feasible and acceptable to participants, (ii) resulted in increased mindfulness understanding and skills, and (iii) led to improved psychological adjustment. Quantitative measures of mindfulness, emotion regulation, mood, and quality of life were administered pre and post the MBSR program and at 3-month follow-up. Measures of mindfulness practice and session clarity were administered weekly. Qualitative participant feedback was collected with a post-program interview conducted by independent clinicians. Seven participants completed the 8-week course. The program's feasibility and acceptability was supported by excellent retention and participation rates and acceptable rates of home practice completion. In addition, qualitative feedback indicated participant satisfaction with the program structure and content. Two core mindfulness skills (observing and non-judgment) showed significant improvement from pre- to post-assessment. Participant qualitative feedback indicated increased confidence and capacity to use mindfulness techniques, particularly in emotionally challenging situations. Participant questionnaire data showed good psychological adjustment at baseline, which did not change after treatment. Psychological benefits of the program identified in qualitative data included fewer ruminations about HD, reduced isolation and stigma, and being seen by others as calmer. These findings justify expansion of the program to determine its efficacy in a larger, controlled study.

Identification of psychoeducation needs and an intervention response for pre-symptomatic Huntington's disease.

People who are aware that they are gene-positive for Huntington's disease (HD) may face an array of personal, relationship, social, financial and employment challenges prior to the onset of the disease. These challenges have been associated with increased psychological problems such as anxiety and depression. Information and support for people with pre-symptomatic HD is indicated, but there is a scarcity of research and service models to inform psychological interventions. We trialled an intervention strategy involving psychoeducation forums designed specifically for pre-symptomatic HD. In phase I of the study, we asked people with pre-symptomatic HD to identify their uppermost needs for information. Phase II involved the delivery of this information via a series of forums. The forums also provided an opportunity for interaction among the participants. Three forums were attended by 88 people with pre-symptomatic HD and significant others. Analysis of post-forum feedback questionnaires indicated high levels of satisfaction with the forums' structure, content and relevance, and notably, the pre-symptomatic specificity of focus. Additional qualitative data from recordings of forum discussion groups revealed that participants greatly valued the opportunity to meet similar others, and share their concerns and strategies for addressing these concerns. There was an abundance of requests for more forums on a wide range of relevant topics. It is recommended that this model of intervention may be of value for implementation in other HD services or community groups.

Pilot investigation into the need and feasibility of a psychoeducation and support group for male caregivers of those with Huntington's disease.

The psychosocial sequelae of caregiving in Huntington's disease (HD) have been shown to be extensive, even in comparison with other progressive neurological disorders. Based on observed clinical need, this investigation aimed to identify psychoeducational and emotional support needs of male HD caregivers and to explore the feasibility and utility of a carer support group. Six male caregivers completed quantitative measures assessing depression, anxiety, carer burden, and carer support needs. The men participated in two education and support group sessions, four weeks apart, which were developed with consideration of male support preferences. Qualitative themes arising in these sessions were documented. Questionnaire results showed overall low levels of psychological distress and carer burden. Despite this, the group sessions facilitated disclosure of significant emotional, practical, and relationship challenges arising from HD. Further, a range of psychoeducational and emotional support needs were identified on quantitative and qualitative assessments. Participants strongly endorsed the format of the group and the benefits of participation, highlighting in particular the importance of meeting other men who understood the experience of living with a spouse with HD.

"A monster that lives in our lives": experiences of caregivers of people with motor neuron disease and identifying avenues for support.

BACKGROUND: A developing body of evidence has provided valuable insight into the experiences of caregivers of people with motor neuron disease; however, understandings of how best to support caregivers remain limited. AIM: This study sought to understand concepts related to the motor neuron disease caregiver experience which could inform the development of supportive interventions. DESIGN: A qualitative thematic analysis of a one-off semistructured interview with caregivers was undertaken. SETTING/PARTICIPANTS: Caregivers of people with motor neuron disease were recruited from a progressive neurological diseases clinic in Melbourne, Australia. RESULTS: 15 caregivers participated. Three key themes were identified: (1) The Thief: the experience of loss and grief across varied facets of life; (2) The Labyrinth: finding ways to address ever changing challenges as the disease progressed; (3) Defying fate: being resilient and hopeful as caregivers tried to make the most of the time remaining. CONCLUSIONS: Caregivers are in need of more guidance and support to cope with experiences of loss and to adapt to changeable care giving duties associated with disease progression. Therapeutic interventions which target these experiences of loss and change are worth investigation. TRIAL REGISTRATION NUMBER: ACTRN12615000120572, pre-results.

A self-care, problem-solving and mindfulness intervention for informal caregivers of people with motor neurone disease: A pilot study.

BACKGROUND: Informal caregivers of people with motor neurone disease (MND) take on an extensive role. Caregivers are at increased risk of experiencing psychological distress and burden, yet, there is a lack of intervention programmes to support them. AIM: The aim of this study was to investigate the feasibility and acceptability of a therapeutic group intervention promoting self-care, problem-solving and mindfulness to informal caregivers of people with MND. DESIGN: Pilot study that utilised a one-arm pre- and post-design. Acceptability of the intervention was assessed 2 weeks post intervention with a questionnaire designed specifically for this study. Feasibility was assessed with consent, adherence and reasons for non-participation, refusal and attrition. Participants completed baseline and follow-up (6-week post intervention) questionnaires for psychological morbidity, burden, problem-solving, mindfulness and preparedness. Settings/participants: Caregivers of people with a diagnosis of MND within the past 12 months who were 18 years or older; who could speak, read and write in English and who were attending a progressive neurological diseases clinic were eligible. RESULTS: A total of 13 caregivers participated in one of three group intervention sessions which were focused on self-care, problem-solving and mindfulness. The intervention appeared to be feasible and acceptable. All participants stated that they would recommend the intervention to others. The group format appeared to be highly valued. There was no significant change in measures between pre-intervention and 6 weeks post intervention. CONCLUSION: This pilot serves as an initial step for examining interventions for MND caregivers, with the hope of identifying effective, efficient and sustainable strategies to best support this group.

Families Affected by Huntington's Disease Report Difficulties in Communication, Emotional Involvement, and Problem Solving.

BACKGROUND: Family functioning in Huntington's disease (HD) is known from previous studies to be adversely affected. However, which aspects of family functioning are disrupted is unknown, limiting the empirical basis around which to create supportive interventions. OBJECTIVE: The aim of the current study was to assess family functioning in HD families. METHODS: We assessed family functioning in 61 participants (38 HD gene-expanded participants and 23 family members) using the McMaster Family Assessment Device (FAD; Epstein, Baldwin and Bishop, 1983), which provides scores for seven domains of functioning: Problem Solving; Communication; Affective Involvement; Affective Responsiveness; Behavior Control; Roles; and General Family Functioning. RESULTS: The most commonly reported disrupted domain for HD participants was Affective Involvement, which was reported by 39.5% of HD participants, followed closely by General Family Functioning (36.8%). For family members, the most commonly reported dysfunctional domains were Affective Involvement and Communication (both 52.2%). Furthermore, symptomatic HD participants reported more disruption to Problem Solving than pre-symptomatic HD participants. In terms of agreement between pre-symptomatic and symptomatic HD participants and their family members, all domains showed moderate to very good agreement. However, on average, family members rated Communication as more disrupted than their HD affected family member. CONCLUSION: These findings highlight the need to target areas of emotional engagement, communication skills and problem solving in family interventions in HD.

Factors to consider for motor neurone disease carer intervention research: A narrative literature review.

OBJECTIVE: The experience of caregiving in the context of motor neurone disease (MND) is extremely challenging. Over the past 15 years, quantitative and qualitative studies have delineated the psychosocial aspects of this experience, exploring its impact on caregivers' quality of life, rates of depression, distress, anxiety, and burden. Our paper aimed to provide an overview of the lived experience of MND caregivers, identifying the variables that can influence MND caregiver functioning that are relevant to the development of an intervention. METHOD: A narrative review was conducted, synthesizing the findings of literature retrieved from 2000 to early 2016. RESULTS: A total of 37 articles were included in the review. The articles varied considerably in terms of methodology and quality. The main influential aspects reported and identified were factors pertaining to the patient, factors intrinsic to the caregiver, relationship factors, and social support factors. SIGNIFICANCE OF RESULTS: There is evidence to support the fact that caregivers have poorer outcomes when they care for patients with a more severe clinical profile, poorer emotional health or neurobehavioral concerns, or when the caregivers themselves struggle with adaptive problem-solving and coping skills. The availability and use of social support are also likely to be important for caregiver psychosocial outcomes. Further investigation is required to clarify the influence of changes in the relationship with the patient. Significant factors affecting the caregiver experience are considered in relation to their amenability to psychosocial intervention. Recommendations are made regarding the optimal features of future psychosocial intervention research.

Prevalence and influence of psychiatric comorbidity on rehabilitation outcome for older hospital inpatients.

BACKGROUND: The objectives of this study were to characterize the psychiatric comorbidity of a group of older subacute inpatients and then determine whether their psychiatric comorbidity affected measures of rehabilitation outcomes. METHODS: Eighty-eight older subacute inpatients were recruited for this prospective study. Psychiatric comorbidity was defined according to a participants' performance on four inventory scales: the Geriatric Depression Scale (GDS), Geriatric Anxiety Inventory (GAI), Brief Psychiatric Rating Scale and Health of the Nation Outcome Scale 65+. Rehabilitation outcome referred to the participants' length of stay and their performance at discharge on the EuroQol-5D health-related quality of life questionnaire and Barthel index. RESULTS: 68% of the participants scored in the clinical range on at least one of the four scales assessing psychiatric comorbidity at admission, with 51% in the clinical range for GDS and 32% for the GAI. The decrease in scores by the time of discharge was significant for all four scales. Linear regression analyses pointed to a trend for depressive symptoms at admission to be an influential but nonsignificant predictor of rehabilitation outcome. An interesting association was found between the length of the previous acute admission and the GDS score on admission to the subacute unit. CONCLUSION: A high prevalence of psychological symptoms was identified upon admission, with a significant decrease by the time of discharge. These factors did not significantly predict the selected measures of rehabilitation outcome. Opportunities for future longitudinal research on the prevalence and impact of psychiatric comorbidities on patient outcomes are considered.