The invisible malady: a critical review of the quality of instruments to measure cancer-related cognitive changes (CRCC) in women with breast cancer

Purpose: The purpose of this critical review was to determine what assessment instruments are potentially available for identifying cancer related cognitive changes (CRCC) in women with breast cancer. It sought to determine valuable psychometric properties to be considered when approaching assessment tools for clinical use in this population. Methods: A replication of a scoping review (originally conducted in February 2013) was performed in order to identify potential instruments. Searches were completed in eight databases to: (a) identify any new literature from 2013 to 2016, (b) identify instruments that may have clinical utility for the use of practitioners and (c) extract evidence for psychometric properties of the identified measures. Critical analysis of both the studies and the instruments identified within the studies were undertaken in order to assess quality of research. Results: Twenty-two studies were identified, with a total of nineteen assessment instruments potentially available for use with the breast cancer population. Four instruments were identified as having the strongest psychometric properties and potential availability for current clinical utility. Conclusions: Results indicate a lack of consideration for psychometric properties when selecting an instrument for the assessment of CRCC in research studies. These results indicate that clinician’s ability to identify issues relating to CRCC in a standardised way is impacted, thus impeding the development of evidence-based care plans for individuals recovering from breast cancer

The impact of non-pharmacological cancer-related fatigue interventions on activity performance and participation outcomes in adult cancer survivors: A systematic review.

Introduction: Increased cancer survivorship means more people are living with cancer-related fatigue (CRF). CRF is the most distressing symptom survivors experience and is associated with activity performance limitations, restricted participation in meaningful life roles and reduced quality of life. Occupational therapists have skills relevant to fatigue management, however, the role of occupational therapy in CRF management is unclear. Synergies between the focus of occupational therapy on enabling participation in everyday life and challenges experienced by survivors living with CRF suggests opportunity for considerable occupational therapy involvement in CRF management. Thesis overview: This thesis contains two sections, a literature review and a systematic review study. The literature review examined and critiqued existing research exploring the experience of survivors living with CRF, current occupational therapy involvement within CRF management and identified an evidence gap pertaining to participation within CRF research. Subsequently, the systematic review study presented in section two of this thesis aimed to identify whether existing non-pharmacological interventions effective in minimising CRF also had an impact on everyday activity performance and participation outcomes for adult cancer survivors. Study methods: The study was a systematic review with narrative synthesis. Eight databases were searched (Medline, CINAHL, PsychINFO, EMBASE, Scopus, OT Seeker, CENTRAL, Cochrane SR database), from 1998-2018 and limited to randomised controlled trials (RCTs) published in English. Study results: A total of 29 studies met selection criteria and were included in the review. Four intervention categories were identified: physical activity, psychosocial, multi-modal and ‘hands on’ therapies. In 28 studies (97%) quality of life, not participation or activity performance, was investigated as a primary or secondary outcome. Correspondingly, instruments measuring quality of life were used in 28 studies (97%). Three studies (10%) used additional instruments to measure participation, however, outcomes were not always reported. No obvious pattern of impact was identified between intervention type and survivors’ quality of life subscale data. Conclusion: Findings of this review indicate there is insufficient evidence to determine whether survivors’ activity performance and participation is impacted by CRF interventions. Consideration of the sensitivity and precision of quality of life instruments to measure activity performance and participation should be incorporated into future CRF research designs

Relationships Between Supportive Physical Home Environment and Participation in Life Activities Amongst Community-Living, Older Australians

Objective: To investigate if there are associations between physical measures of home supportiveness and participation in life activities for older Australians. Method: A secondary analysis of cross-sectional study data from the Home and Independent Living (HAIL) study. This study used a postal survey, home interview and interviewer-rated home assessment data of 202 NSW residents aged over 75 years. Data were analysed using SPSS to determine associations between variables related to supportive home features and frequency of participation in activities. Results: Homes reviewed in this study demonstrated low levels of supportive built environmental features. There were no significant associations between having a relatively more supportive home and participating more frequently in activities. Conclusions: Older Australians in this study were participating in a range of activities despite having homes that were not considered supportive using objective measures. This may suggest that current standardised measures of home features are not sufficient to determine how supportive homes are to ensure the participation of older people. Further Australian research exploring relationships between participation and the perceptions of older people about their home supportiveness; participation and home features of people who have functional issues; and participation and combined home and neighbourhood features is needed to fully understand home supportiveness

Exploring the Role of Occupational Therapy in Australian Cancer Care

Background / Aim: Increasing rates of cancer survival in Australia indicate that more people are living with long-term side effects of the disease and its treatment, and survivorship is now often considered a distinct phase of cancer care. Whilst occupational therapists play an integral role in multidisciplinary care for many chronic illnesses, there is little evidence documenting the profession’s role in cancer care. This study aimed to explore the views of Australian occupational therapists regarding current and best practice for people with cancer, from diagnosis through to survivorship. Methods: A cross-sectional online survey was developed and distributed through the Occupational Therapy Australia database to collect responses from occupational therapists in diverse areas of practice around Australia. Results: A total of 204 completed surveys were returned. More than 85% of respondents worked with people with cancer at least occasionally and 33% of practice occurred in community settings. Participants perceived equipment provision to be the most common intervention (94%), followed by energy conservation (90%) and pressure care (78%). Lack of funding for occupational therapy positions and a lack of recognition of the role of occupational therapy by health professionals and consumers were seen as key barriers to best practice. Conclusion: This study highlights the need for occupational therapists to commit to research efforts and to work collaboratively with the multidisciplinary team to develop long-term routine treatment pathways that address the needs of cancer survivors

Home Falls and Accidents Screening Tool (SR)

The HOME FAST-SR is a self report version of the Home Falls and Accidents Screening Tool. It contains more detailed items to assist an older person to make their own evaluation of their falls risk due to home hazards in their home environment, compared to the HOME FAST - HP which is designed for use by health professionals. This document also includes instructions for how to transform the data from the HOME FAST-SR to the equivalent HOME FAST-HP score

Goal setting with older people in acute care before and after discharge: Occupational therapists' perspectives

Background: The World Health Organisation identified that there is an increased risk to elderly of readmission to hospital following an acute hospital admission due to decreased function and deconditioning during hospitalisation. As such, researchers have reviewed the discharge process of older adults to identify areas for potential improvement. The aim of this study was to explore the experiences of occupational therapists during goal setting in acute aged care in Australia and to determine whether implementing training and a structured goal setting procedure such as the HOME protocol is feasible and beneficial. Method: This study used a phenomenological study design and semi-structured interviews. Four therapists who participated in the HOME trial were recruited from New South Wales and Victoria. Interviews were conducted by telephone and focused on the therapist experiences of goal setting before, during and after the HOME study. Interviews were recorded and transcribed verbatim. Thematic analysis of the interview data was conducted and involved coding, data reduction, categorisation and determining themes and relationships. Results: Results suggested three themes related to goal setting in acute aged care: (a) developing client-centred goals, (b) the therapist experience and training and (c) the ideal goal setting practice. However, therapists perceived that the reality of practice puts a number of pressures on them when setting goals in order to manage the return home for older persons – as such, some elements of best practice in goal setting must be forfeited. Conclusions: Goal setting in acute aged care in Australia is complex and therapists face many of the same challenges as those in other western countries. Furthermore, therapists found structured goal setting frameworks to be beneficial, however, felt that they are not feasible in the current context of practice

Parent perspectives:The value of trained dogs in animal assisted therapy for children and adolescents with Autism Spectrum Disorder

Dogs may elicit positive therapy outcomes for children with Autism Spectrum Disorder (ASD). Despite growing research into Animal Assisted Therapy (AAT) for ASD, the parent perspective has not yet been fully engaged. This study aimed to explore parent perspectives regarding AAT. Sixteen semi-structured interviews were conducted with parents following their child's completion of an AAT program. Thematic analysis, line by line coding and consensus theme refinement were used for data analysis. Three themes emerged. Parents valued that the dogs supported their child: stress and anxiety management; engagement and participation; and social-communication. Parents valued the dogs as having a calming effect that facilitated child participation in several life-skill activities and social-communication. Future studies should investigate how best to target AAT with dogs for children with ASD.Assistance Dogs Australi

The Lived Experience of Refractory Breathlessness

Introduction: Refractory breathlessness is breathlessness at rest or on minimal exertion that persists chronically even with optimal treatment of the underlying cause. Despite its burden and prevalence globally, symptoms remain under-treated and under-researched and those affected struggle daily with the condition. Aim: The aim of the study was to gain a greater understanding of the lived experience of refractory breathlessness. Also, it was anticipated that a deeper insight into its impacts on daily activities would allow more effective occupational therapy interventions to be developed. Method: A qualitative phenomenological approach using NVivo software, with one-on-one, semi-structured interviews and themes established through thematic analysis. The study recruited consecutive patients until thematic saturation was reached. Participants were recruited from a Sydney-based outpatient Breathlessness Clinic at a palliative care hospital. Results: 6 participants were interviewed and 4 main themes identified. 1) Living on the Edge, referring to the extreme feeling of breathlessness experienced by patients; 2) Social Needs, describing the significance of social support; 3) Reduced to the Basics, referring to the effect breathlessness has on basic daily tasks, and 4) Sources of Security, which describes the measures participants take to protect themselves from their own breathlessness. For each of the four themes, three to five subthemes were also identified through the analysis. Conclusion: Of the 4 themes identified in this study, number 3 and 4 may represent the best targets for occupational therapy interventions. Patients noted the importance of functional participation for improved engagement and quality of life. There is scope to develop specific interventions for self management and equipment prescription given lack of published literature in this area

“I'm not telling an illness story. I'm telling a story of opportunity”: Making sense of voice hearing experiences

Background/aim: Traditional approaches to voice hearing discourage the exploration of this experience. Current evidence suggests that understanding voice hearing experiences (VHE) facilitates recovery; yet, little is known about how voice hearers make sense of this phenomenon. This study aimed to explore how adults with lived experiences of voice hearing understand their VHE. Method: A phenomenological approach guided the study design. In-depth, semi-structured interviews were conducted with five participants who attended the Hearing Voices Recovery Support Group in Sydney, Australia. Participants completed the Self- Identified Stages of Recovery questionnaire and the Revised Beliefs About Voices Questionnaire. Thematic analysis was employed to uncover the ‘essence’ of this phenomenon. Findings: Understanding the voice hearing experience was characterized by an overarching theme of ‘tension and recalibration’. This overarching theme permeated each of five sub-themes: beliefs about voices; navigating the relationship with my voices; learning to live with my voices; rediscovering myself with my voices; and, influences to understanding my voices. Conclusion: This study highlights how voice hearer’s understanding of VHE evolves over time, and throughout phases of recovery. Clinical implications include early intervention to support individuals to: explore their VHE to derive personal meaning; navigate their relationships with voices to promote mutually beneficial relationships; and, regain a positive sense of self

“I'm not telling an illness story. I'm telling a story of opportunity”: Making sense of voice hearing experiences

Background/aim: Traditional approaches to voice hearing discourage the exploration of this experience. Current evidence suggests that understanding voice hearing experiences (VHE) facilitates recovery; yet, little is known about how voice hearers make sense of this phenomenon. This study aimed to explore how adults with lived experiences of voice hearing understand their VHE. Method: A phenomenological approach guided the study design. In-depth, semi-structured interviews were conducted with five participants who attended the Hearing Voices Recovery Support Group in Sydney, Australia. Participants completed the Self- Identified Stages of Recovery questionnaire and the Revised Beliefs About Voices Questionnaire. Thematic analysis was employed to uncover the ‘essence’ of this phenomenon. Findings: Understanding the voice hearing experience was characterized by an overarching theme of ‘tension and recalibration’. This overarching theme permeated each of five sub-themes: beliefs about voices; navigating the relationship with my voices; learning to live with my voices; rediscovering myself with my voices; and, influences to understanding my voices. Conclusion: This study highlights how voice hearer’s understanding of VHE evolves over time, and throughout phases of recovery. Clinical implications include early intervention to support individuals to: explore their VHE to derive personal meaning; navigate their relationships with voices to promote mutually beneficial relationships; and, regain a positive sense of self