ORCID Profile
0000-0002-6046-3504
Current Organisation
Victoria University
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Publisher: Hindawi Limited
Date: 11-2019
DOI: 10.1111/ECC.13162
Abstract: Scant research explores health professionals' experiences of providing inpatient cancer rehabilitation services, either from the negative or positive perspectives. This report explores the lived experiences of 14 multidisciplinary health professionals providing cancer rehabilitation services within an inpatient setting. Their interpretations provide a distinctive evaluation of an inpatient, cancer rehabilitation service, both negative and positive, and the impacts of their experiences on them and their patients. Data from semi-structured focus groups and interviews were analysed using Interpretative Phenomenological Analysis (IPA: Psychology and Health, 11, 1996, 261-271) to produce thematic results. Health professionals' focus groups and interviews produced one superordinate theme: Therapeutic community. Subordinate themes were Healing and Hope, Limited by the System, Moral Integrity and Growth, with further subthemes Invalidation, Moral dilemmas, Gratitude and Humility. Positive views of the specialist service were tempered with issues associated with finite resources and staff feeling unsupported in their person-centred approach. Although rehabilitation was the primary focus of the unit, metastatic cancer may behave unpredictably symptom recurrences meant that a dialogue of accepting palliative care and dying as a phase of life was also an important factor raised by some patients and families in our setting. Referral to palliative specialists for this dialogue was incorporated in the context of the rehabilitation care provided. Study participants provided a unique window, encompassing both negative and positive perspectives, to understanding their deep commitment to quality of care, despite resource limitations. Professionals in this inpatient team worked to provide optimal multidisciplinary services relevant to each in idual's need to move towards strength and independence.
Publisher: SAGE Publications
Date: 27-07-2016
Abstract: Minimal research explores the impact of dementia and a dementia diagnosis on families from the unique vantage of senior health professionals. The participants of this study, eight senior aged care professionals, provided unique interpretative insights into family dynamics and sense-making on the journey with dementia, and their own role in that journey. Both positive and negative perspectives were sought. Data from semi-structured interviews were analysed using Interpretative Phenomenological Analysis (IPA). One superordinate theme, Dementia naiveté redefined intimacy, overarched Embarrassed shame Maintaining hope Redefining a model of intimacy and Redefined relational intimacy and growth. Within these themes, the participants shed light on hurtful embarrassment and shame experienced by families associated with the diagnostic label given to a loved one. This label was perceived to either trigger separation, hurt and immobility through ignorance, or precipitate a frenzy of naive yet hopeful energy for seeking that elusive cure. The participants saw their role as one of enacting a new way of connecting what was with what could be. Thus, they modelled advocacy, integral care and relational intimacy. Validation came in witnessing a redefining of intimacy in many families who were able to embrace that holistic and empathic approach to the shifting presentation of dementia. Psychological well-being was observed to occur when families embraced growthful domains, e.g. acceptance, hope, relational closeness and altruistic concern for other families. Implications for future care models are discussed.
Publisher: LIDSEN Publishing Inc
Date: 08-10-2018
Publisher: Hindawi Limited
Date: 12-08-2022
DOI: 10.1111/ECC.13681
Abstract: The objective of this study is to explore both the negative and positive lived experiences of cancer survivors during specialist inpatient rehabilitation programmes. This phenomenological study explored the negative and positive perspectives of cancer survivors with residual disability, during their inpatient rehabilitation. Semi-structured interviews conducted with 22 inpatients on admission and discharge were analysed using the protocols of Interpretative Phenomenological Analysis. Experiences of inpatient cancer rehabilitation were not independent of the whole cancer trajectory. Rather, for these inpatients, processing and ruminating upon challenges to self from the moment of cancer diagnosis and throughout treatments indicated that more emotional and psychosocial support may be useful throughout cancer rehabilitation and the whole cancer trajectory. Understanding the concurrent sources of psychological distress and growth in these cancer survivors as they recover from life changing events provides a unique consumer evaluation of an inpatient cancer rehabilitation service and the overall cancer experience. This study has implications for developing insight into the impact that the cancer trajectory has on the in idual and reinforces the importance of a holistic approach to rehabilitation that includes a supported mind, body and spirit appreciation of healing.
Publisher: SAGE Publications
Date: 20-03-2014
Abstract: There is minimal research investigating non-speech communication as a result of living with severe dementia. This phenomenological study explores retained awareness expressed through non-speech patterns of communication in a family member living with severe dementia. Further, it describes reciprocal efforts used by all family members to engage in alternative patterns of communication. Family interactions were filmed to observe speech and non-speech relational communication. Participants were four family groups each with a family member living with non-speech communication as a result of severe dementia. Overall there were 16 participants. Data were analysed using thematic analysis. One superordinate theme, Dance of Communication, describes the interactive patterns that were observed during family communication. Two subordinate themes emerged: (a) in-step characterised by communication that indicated harmony, spontaneity and reciprocity, and (b) out-of-step characterised by communication that indicated disharmony, syncopation, and vulnerability. This study highlights that retained awareness can exist at levels previously unrecognised in those living with limited or absent speech as a result of severe dementia. A recommendation for the development of a communication program for caregivers of in iduals living with dementia is presented.
Publisher: Hindawi Limited
Date: 30-07-2019
DOI: 10.1111/ECC.13133
Abstract: Rehabilitation is increasingly recognised as effective in addressing impairment and functional disability after cancer treatment. Few studies have investigated the lived positive and negative experiences of cancer patients receiving rehabilitation. Semi-structured in-depth interviews were conducted with 22 inpatient volunteers, at their admission and discharge from a subacute hospital rehabilitation unit. We heard narratives of their experiences and their in idual goals in our programmes, seeking to make positive and negative subjective interpretations of these. We undertook Interpretative Phenomenological Analysis (IPA) of interviews. Patients described an immense array of personal challenges, including coping with and adapting to functional losses, whilst assimilating the reality that life might not continue as before. They were often living and rehabilitating after the residual effects of cancer treatments, whilst facing new challenges that threatened their quality of life. Although rehabilitation usually improved patients' functional abilities, many still increasingly needed to depend on others in daily life. Understanding the narrative of these experiences provides a unique consumer evaluation of an inpatient cancer rehabilitation service. In iduals described a healing environment, where they received multiple therapies and set goals to improve daily living function, as they continued along their personal cancer trajectories.
Publisher: Elsevier BV
Date: 07-2018
Publisher: SAGE Publications
Date: 26-11-2021
Abstract: Few studies explore both negative and positive perspectives of family members who relinquish home care of a family member with dementia for systemic aged care. This phenomenological study sought the ‘lived’ experience of relinquishing the role of home carer for a family member with mild to severe dementia to others within care home settings, by seeking to understand the impact of aged care on family members’ psychological well-being. Using semi-structured interviews, positive and negative subjective interpretations from 17 families (27 in iduals) provided data for analysis, following the protocols of interpretative phenomenological analysis. One superordinate theme, mistrust/integrity, overarched oscillation between mistrust of the aged care system and a struggle for personal integrity in caring for these participants. Two sub-themes emerged: intrinsic trauma and extrinsic trauma. Intrinsic trauma explained feelings of helplessness and guilt, and internally directed responses that triggered a retreat into submission ultimately reducing the participant’s role in advocacy. Extrinsic trauma represented externally directed responses such as anger and frustration, where family members became more engaged and watchful and recognised a need for vigilance and advocacy. Paradoxically oscillating between these personal struggles, participants exhibited growth, a third theme that defined assertive/advocacy utilised to nurture hope, gratitude, courage and change. Family members experienced complex distress as they relinquished home care to others within systemic aged care for a member with dementia. By developing adaptive responses as appropriate, for ex le, advocating for their family member or accepting compliance with treatment, collaborative care between family and staff created better outcomes for the family member with dementia.
Publisher: Common Ground Research Networks
Date: 2022
Publisher: SAGE Publications
Date: 07-11-2016
Abstract: A paucity of research explores both negative and positive changes for family members supporting a loved one with dementia, especially when communication by speech and awareness of others diminishes. This qualitative study sought the views of family groups concerning their experiences over the past 10 years supporting a loved one with dementia. A focus group sought negative and positive subjective interpretations of this phenomenon. One superordinate theme: Synthesis of Meaning emerged from the data using interpretative phenomenological analysis. This overarched two subordinate themes: (a) Steps backward—encompassing those times when relatives hovered uncertainly, missed opportunities to engage due to advancing dementia, and felt regret and (b) Steps forward—encompassing moments of unexpected rewards, acceptance, self-forgiveness, and empathic connection with others on a similar journey. This study highlights that although often fraught with distress, positive aspects of the dementia journey are possible and offer opportunity for psychological growth and well-being.
Publisher: Informa UK Limited
Date: 17-05-2018
DOI: 10.1080/13607863.2017.1326462
Abstract: This qualitative study seeks evidence of retained social awareness in in iduals with moderate dementia residing in care-homes, when engaged in interactive family visits. Speech/non-speech data collected from 10/15-minute video-recorded family interactions of five family groups (12 in iduals 2 sessions per family group) were coded using thematic analysis. Interactional patterns embedded in familiar bonds provided the context for the superordinate theme: relational social engagement (RSE). This overarched two subthemes: in-step and out-of-step highlighting that RSE, can occur as a result of both positive and negative familial communication patterns. When familial communication was in-step, despite changed communication pathways, the resident's attempts at social engagement appeared open, relaxed, and responsive. A sense of trust, and familiarity appeared to facilitate reciprocal understanding and the striving of resident family members to retain family group membership. When familial communication was out-of-step, active attempts at reciprocity or open engagement from visiting family members were not observed. At such times, communication became discordant, and frustrated in their efforts to remain an integral part of the family group, the resident appeared disinterested or guarded often retorting with annoyance at visiting family members. The construct of RSE appears specific to prior meaningful relationships, where optimal social awareness and communication, positive and negative, can occur. Currently, dementia assessment and care does not include RSE during family interactions. Implications are discussed.
Publisher: Informa UK Limited
Date: 05-09-2017
DOI: 10.1080/13607863.2016.1220923
Abstract: Few studies have utilised observation to investigate retained awareness when in iduals with severe dementia interact with family members. Seeking evidence of retained awareness in those with severe dementia, interactive family visits in care homes were observed and analysed. Five family groups (14 in iduals) completed 10/15-minute video recorded family interactions. Speech and non-speech interactions were analysed using Thematic Analysis. One superordinate theme: Distinctive family bonds overarched two subthemes, in-step and out-of-step describing positive and negative familial interactions. In-step interactions revealed family groups reciprocating social support, having fun together, and willing to go on the ride together. Out-of-step interactions characterised social frustration, non-reciprocity, and sidelining of members with dementia. Although awareness fluctuated, complex awareness was observed in the speech/non-speech expressions of those with dementia. In response, visitors appeared to treat those expressions and behaviours as understandable. Observed outcomes were out-of-step when visitors sought to retain the familiar and in-step when visitors sought to optimise all communication possibilities. Video recorded family interactions and analysis revealed: (a) awareness was retained in the participants with severe dementia beyond assessed levels and (b) Relational Social Engagement (RSE) occurred within family groups despite positive or negative interactions. Implications are discussed.
Publisher: Informa UK Limited
Date: 16-02-2017
DOI: 10.1080/13607863.2016.1146872
Abstract: Limited research explores the medical model of residential care in dementia from the family caregiver's perspectives. This study sought subjective interpretations of nine family caregivers who experienced relinquishing their status as primary caregiver to a medical model, dementia care residential setting. Following semi-structured interviews and transcription data was analysed using interpretative phenomenological analysis. One superordinate theme, navigating 'system' control, overarched three subordinate themes: connecting/disconnecting, windows closing, and capacity for sensation. Navigating system control reflected participants' experience of circumnavigating a medical system fraught with hierarchical challenges inclusive of a complex maze of contradictions that appeared threatening, yet appeared comforting authoritarian, yet often humane. For them, care of self, while advocating for a family member with dementia, required vigilance to manoeuvre a system of care that imposed its uninvited authority at will. Connection/disconnection highlights the enduring struggle for inclusivity in caregiving despite the omnipresent trauma of windows closing. Psychological growth came to these participants through an unexpected capacity for sensation which offered a unique lens to communication with the family member with dementia primarily through sensory exchange. Models of dementia care and therapeutic interventions could inclusively involve dementia family caregivers who may be experiencing traumatic distress, and associated guilt, stigma, loss, and grief. Co-existing psychological wellbeing, however, is possible when family members are encouraged to transition communication to sensory awareness and exchange as windows close.
Publisher: SAGE Publications
Date: 27-07-2016
Abstract: Minimal research explores the impact of a career in dementia care on senior health professionals. This study sought positive and negative subjective interpretations from seven senior health professionals regarding their experiences in dementia care. Data from semi-structured interviews were analysed using interpretative phenomenological analysis (IPA). One superordinate theme, Honouring stigmatised self, overarched four sub-themes: Systemic stigma, Invalidated, Self-respect and Moral integrity and Growth. Stigma was interpreted as systemically entrenched minimisation of aged care and the aged-care workforce, including poor remuneration and training. Participants experienced peer invalidation particularly when attempting to resolve complex professional and moral challenges in dementia care. These often occurred in the context of efforts to in idualise care, constrained within a medical model. Paradoxically, external invalidation motivated a search for redefining ‘self’ and moral integrity. By wisely acknowledging career experience, growthful domains of self-respect, optimism, humility and innovation defined professional practice and personal choices. Implications are discussed.
No related grants have been discovered for Bruce Walmsley.