Australian inpatient cancer rehabilitation as seen by patients receiving care pre and post intervention: Insights into unmet needs in the cancer and rehabilitation journey.

OBJECTIVE: The objective of this study is to explore both the negative and positive lived experiences of cancer survivors during specialist inpatient rehabilitation programmes. METHODS: 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. RESULTS: 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. CONCLUSION: 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 individual and reinforces the importance of a holistic approach to rehabilitation that includes a supported mind, body and spirit appreciation of healing.

Dementia families: Relinquishing home care to aged care services: Guilt, traumatic loss and growth.

BACKGROUND AND OBJECTIVES: 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. RESEARCH DESIGN AND METHODS: 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 individuals) provided data for analysis, following the protocols of interpretative phenomenological analysis. RESULTS: 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. DISCUSSION AND IMPLICATIONS: 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 example, 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.

Multidisciplinary healthcare providers' experience of working in an inpatient cancer rehabilitation unit in Sydney, Australia.

OBJECTIVE: Scant research explores health professionals' experiences of providing inpatient cancer rehabilitation services, either from the negative or positive perspectives. METHOD: 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. 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. CONCLUSION: 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 individual's need to move towards strength and independence.

Holding on while letting go: trauma and growth on the pathway of dementia care in families.

OBJECTIVES: Limited research explores the medical model of residential care in dementia from the family caregiver's perspectives. METHOD: 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. RESULTS: 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. CONCLUSIONS: 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.

Stigma, the medical model and dementia care: Psychological growth in senior health professionals through moral and professional integrity.

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 individualise 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.

The dance of communication: retaining family membership despite severe non-speech dementia.

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 individuals living with dementia is presented.