Navigating a Way Forward: How Women Survivors of Breast Cancer and Their Partners Face Challenges Adapting to Their Changed Lives

Many women survivors of breast cancer and their partners experience challenges while attempting to resume meaningful activities and important life roles following treatment cessation. This mixed method study aimed to explore these challenges and appraise the current services available to meet ongoing needs. Three major themes were determined; women and partners experience occupational disruption, use of a survivorship care plan and rehabilitation is warranted, occupational therapy has a role in assisting women and partners during survivorship

An investigation of occupational therapy services for people who are dying in Western Australia

BACKGROUND In Western Australia (WA) little is known about the occupational needs of people at the end of life and their primary carers. The role of occupational therapy (OT) in addressing these needs is not documented and the palliative services provided by occupational therapists (OTs) are poorly understood. To address this gap there were several aims of the study. First, to ascertain the number of OTs working in this field across a range of service delivery locations in WA. Second, to explore the self-care, leisure and productive occupations of dying people through carers’ reports of their daily experiences and reflections on their occupational needs. Finally, to understand the role of OT in meeting these needs, this research aimed to document the unique kinds of services provided by Western Australian OTs who provide palliative care to a range of service delivery locations in WA.METHODS A mixed methods approach in two stages was used to achieve the research objectives. In stage one an email survey was conducted to identify preliminary data that informed the substantive component of the research. This survey determined the number of OTs providing services to people who were dying in WA and the types of services provided, and then calculated a ratio with the number of people dying from conditions considered amenable to palliative care. In stage two, semistructured interviews were used to gather information from carers (n = 10 metropolitan, n = 4 rural) and occupational therapists (n = 13 metropolitan, n = 5 rural). Data were analysed qualitatively using grounded theory to develop categories. Themes were defined using the constant comparison method.RESULTS The survey of OTs indicated that 6.15 full time equivalent OTs were employed to provide palliative services in Western Australia. Compared with the number of people who died from conditions considered amenable to palliative care over a one year period in WA, this is represented as a ratio of one occupational therapist per 875 people. Two key themes emerged from the interviews with carers, disengagement from occupations with resultant occupational deprivation and disempowerment. The interviews with OTs illustrated that the occupational needs of dying people and their carers were not addressed adequately in palliative care service delivery. Furthermore OTs have limited opportunities to both contribute to the care of dying people and address their core business of ‘occupation’.CONCLUSION The research demonstrated that Western Australian OTs have limited opportunity to address the occupational needs of people at the end-of-life and their primary carers. Palliative services currently focus on pain and symptom management for their clients. While this is to a large extent understandable, carers also reported the importance of engaging in meaningful and satisfying occupations throughout the palliative period for the dying person and themselves. Occupational Therapists are well placed to address these needs but face a number of personal and organisational challenges in achieving this goal. For change to occur, issues of education and professional development, organisational and policy management would need to be addressed

Exploring the social networks of bereaved spouses: Phenomenological case studies

Bereavement is a significant stressor that can affect and be affected by social support, yet there is little known about the social networks of bereaved individuals. We conducted an in-depth qualitative examination of the social networks of bereaved spouses through an interpretive phenomenological analysis. Five participants were interviewed about their social networks prior to and following bereavement. Participants described considerable changes in their social networks. They reported connecting with others who had experienced similar stressors, including via online support groups for widows/widowers, as a key strategy for re-engagement with their social worlds. The death of a spouse can precipitate the dramatic reorganization of social networks to incorporate and adapt to this crisis. Findings offer guidance for service providers to support bereaved spouses to harness existing social networks to optimize received support

A Qualitative Exploration of Seriously Ill Patients’ Experiences of Goals of Care Discussions in Australian Hospital Settings

© 2020, Society of General Internal Medicine. Background: Goals of care (GOC) is a communication and decision-making process that occurs between a clinician and a patient (or surrogate decision-maker) during an episode of care to facilitate a plan of care that is consistent with the patient’s preferences and values. Little is known about patients’ experiences of these discussions. Objective: This study explored patients’ perspectives of the GOC discussion in the hospital setting. Design: An explorative qualitative design was used within a social constructionist framework. Participants: Adult patients were recruited from six Australian hospitals across two states. Eligible patients had had a GOC discussion and they were identified by the senior nurse or their doctor for informed consent and interview. Approach: Semi-structured individual or dyadic interviews (with the carer/family member present) were conducted at the bedside or at the patient’s home (for recently discharged patients). Interviews were audio-recorded and transcribed verbatim. Data were analysed for themes. Key Results: Thirty-eight patient interviews were completed. The key themes identified were (1) values and expectations, and (2) communication (sub-themes: (i) facilitators of the conversation, (ii) barriers to the conversation, and (iii) influence of the environment). Most patients viewed the conversation as necessary and valued having their preferences heard. Effective communication strategies and a safe, private setting were facilitators of the GOC discussion. Deficits in any of these key elements functioned as a barrier to the process. Conclusions: Effective communication, and patients’ values and expectations set the stage for goals of care discussions; however, the environment plays a significant role. Communication skills training and education designed to equip clinicians to negotiate GOC interactions effectively are essential. These interventions must also be accompanied by systemic changes including building a culture supportive of GOC, clear policies and guidelines, and champions who facilitate uptake of GOC discussions

Cancer survivors' experiences of using survivorship care plans: a systematic review of qualitative studies

Purpose: Cancer survivorship care plans (SCPs) are currently used in care settings to assist survivors during the transition from treatment to survivorship. In this paper, the experiences of cancer survivors are examined to provide their perspective of how survivorship care plans are used in practice. Methods: A systematic review and critical review of the qualitative literature regarding the experiences of cancer survivors using survivorship care plans was completed. Databases reviewed included CINAHL, AMED, Embase, MEDLINE, Informit, ProQuest, PsycINFO, ScienceDirect, Wiley Online Library, Scopus and Web of Science from 2000 to 2014.ResultsEleven qualitative studies were appraised for methodological quality and content. They revealed four key themes: stakeholders agreed that SCPs should be used as a key strategy for cancer survivors; there was a lack of consensus on the format, content and who should develop the SCP; cancer survivors do not consistently receive SCPs; and there was a lack of evidence to support the use of SCPs in practice. Conclusions: There is great potential for SCPs to assist cancer survivors and this is supported by the range of qualitative literature examined in this study. Further research is required to examine the many practical issues relating to the delivery of SCPs and how they may be used across a variety of care contexts as well as providing further evidence to support their use. Implications for Cancer Survivors: With further research, refinement and contributions made by survivors, health researchers and health care professionals, the survivorship care plan is proposed to be a useful and practical tool aimed at supporting the survivorship continuum of care

A dyadic approach to understanding the impact of breast cancer on relationships between partners during early survivorship

© 2016 The Author(s). Background: The shared impact of breast cancer for women and their male partners is emerging as an important consideration during the experience of a breast cancer diagnosis, particularly during survivorship. This study aimed to explore the experiences of women and their partners during early survivorship and contributes a range of insights into the lives of those intimately affected by breast cancer. Methods: In-depth interviews were completed with Australian women survivors of breast cancer (n = 8) and their partners (n = 8), between six months and five years following cessation of treatment. Questions included a focus on the women and their partners' daily experiences during early survivorship, including the management of ongoing symptoms, engagement in leisure and social interests, returning to work, communicating with each other, maintenance of the current relationship and other important roles and responsibilities. Thematic analysis was employed to determine key themes arising from the dyadic accounts of women and their partners' experiences during early breast cancer survivorship. Results: Women and their partners experienced many changes to their previous roles, responsibilities and relationships during early breast cancer survivorship. Couples also reported a range of communication, intimacy and sexuality concerns which greatly impacted their interactions with each other, adding further demands on the relationship. Three significant themes were determined: (1) a disconnection within the relationship - this was expressed as the woman survivor of breast cancer needing to prioritise her own needs, sometimes at the expense of her partner and the relationship; (2) reformulating the relationship - this reflects the strategies used by couples to negotiate changes within the relationship; and (3) support is needed to negotiate the future of the relationship - couples emphasised the need for additional support and resources to assist them in maintaining their relationship during early survivorship. Conclusion: It can be concluded that the early survivorship period represents a crucial time for both women and their partners and there are currently limited options available to meet their shared needs and preferences for support. Findings indicate that a suitable model of care underpinned by a biopsychosocial framework, access to comprehensive assessment, timely support and the provision of targeted resources are urgently needed to assist women and their partners during this critical time

Is occupation missing from occupational therapy in palliative care?

Background/aim: The role of occupational therapists in palliative care is largely undocumented in Western Australia (WA). Little is known about the services occupational therapists provide or the needs of people who are dying and their carers in relation to these services. The aims of this study were as follows. First, to determine the number of occupational therapists employed and the range of services they provide in palliative care in WA. Second, with particular reference to self care, leisure, productive roles and occupations, to explore the daily experiences of people who were dying as well as their primary carers to determine the services that might be offered by occupational therapy to this population. Methods: Semi-structured interviews were used to gather information from carers (n = 10 metro, n = 4 rural) and occupational therapists (n = 13 metro, n = 5 rural). Data were analysed qualitatively using grounded theory to develop categories. Themes were defined using the constant comparison method.Results: Four themes emerged that impacted people who were dying and their carers. These were; ongoing disengagement from usual activities with resultant occupational deprivation; disempowerment of both people who are dying and their carers within palliative care services; ‘occupation’ not being addressed adequately in palliative care and occupational therapists experience frustration with limited opportunities to contribute to the care of people who are dying. Conclusions: This paper highlights gaps in service provision in WA to people who are dying and their carers. It provides direction for occupational therapists to offer an occupation-focussed approach to the care of this vulnerable group

Understanding occupational engagement for individuals with bariatric needs: The perspectives of Australian Occupational Therapists

© 2020 Occupational Therapy Australia Introduction: Over the last 20 years, the number of individuals affected by obesity in Australia has increased by 56%. The impact of excessive weight gain results in a wide range of physical, psychological and social difficulties, with resultant changes to occupational performance and engagement. For some people within this population, a further consequence of this increasing weight gain contributes to additional difficulties, with the individual being considered to be “bariatric”. For these people, resultant changes include decreased capacity to engage in self-care activities, leisure occupations and productive roles, creating significant difficulties in undertaking important life roles. This phenomenological study aimed to understand the occupational engagement of individuals with bariatric needs, and to identify potential opportunities to support the engagement and participation of these individuals from the perspectives of Australian occupational therapists. Methods: Qualitative data were collected from 11 semi-structured interviews with occupational therapists from a variety of practice settings. Results: Thematic analysis identified four central themes (a) Occupational engagement was significantly impacted by a lack of suitable resources and availability of daily living equipment; (b) Health and well-being were impacted by a disruption in meaningful occupational engagement; (c) Occupational roles were limited due to poor occupational identity and perceptions of not belonging within the community; (d) Occupational therapists do have a varied role when working with individuals with bariatric needs. Conclusion: Occupational therapists engaged in this study indicated that people with bariatric needs were significantly impacted by many complex issues as a result of their health condition, often contributing to poor health and decreased well-being. Occupational therapists are well-placed to engage with individuals with bariatric needs across many care contexts and must take up potential opportunities to provide services targeted towards the increased engagement and participation of these individuals, with resultant improvements to health and well-being

A randomized pilot study on self-management in head and neck lymphedema

Background: The purpose of this pilot trial was to determine the feasibility of a self‐managed lymphedema randomized control trial to test the effectiveness of a head and neck‐specific exercise protocol. Methods: Nine participants were randomized to receive usual treatment provided by an Australian metropolitan teaching hospital (n = 4) or usual treatment with an added head and neck exercise regime (n = 5). Feasibility was assessed through ease of recruitment, adherence, and safety. Lymphedema reduction and quality of life (QOL) data were assessed at baseline (0 week) and follow‐up (6 weeks). Results: The study was feasible in terms of safety and participant retention. However, a slow recruitment rate and low adherence may impact future trials. There were no significant differences in lymphedema reduction or QOL between groups. Conclusion: This pilot feasibility study demonstrated that a self‐management trial can be implemented, however, modifications will be required due to the slow recruitment and poor adherence rates