An exploration through interview and drawings of the experiences of patients diagnosed with oral cancer across their cancer trajectory

Background: The treatment of oral cancer is complex and lengthy. Curative treatment implies a combination of surgery, radiotherapy and chemotherapy. The main goal of treatment is to guarantee long-term tumour free survival with as little functional and cosmetic damage. Despite progress in developing these strategies, cancers of the oral cavity continue to have high mortality rates that have not improved dramatically over the past ten years. Aim: The aim of this study was to uniquely explore the dynamic changes in the physical, psychological, social and existential experiences of newly diagnosed patients with oral cancer at two points across their cancer illness trajectory i.e. at the time of diagnosis and at the end of treatment. Methodology: A qualitative prospective longitudinal design was employed. Non-probability purposive sampling allowed the recruitment of 10 participants. The principal data collection method used was a digital audio taped semi-structured interview along with drawings produced by the participants. Analysis: Data was analysed using latent content analyses. Summary: Three ‘dynamic’ themes, physical, psychosocial and existential experiences were revealed that interact and influence each other in a complex and compound whole. These experiences are present at different degrees and throughout the entire trajectory of care. Patients have a number of specific concerns and challenges that cannot be compartmentalised into unitary or discrete aspects of their daily lives. Conclusion & Implications: An understanding of the patient’s experience of their illness at all stages of the disease trajectory, is essential to inform service providers’ decision making if the delivery of care is to be client centred. Dynamic and fluctuating changes in the patient’s personal experience of the cancer journey require dynamic, energetic and timely input from health care professionals.

Cancer related fatigue and self-care while undergoing chemotherapy: patients' perspectives

Background: Cancer related fatigue (CRF) is considered the most severe, debilitating and under-managed symptom of cancer. Patients receiving chemotherapy experience high levels of CRF which profoundly impacts on their lives. Aim: 1). To explore and measure CRF and determine the most effective self-care strategies used to combat CRF in a cohort of patients with a diagnosis of cancer (breast cancer, colorectal cancer, Hodgkin’s and Non-Hodgkin’s lymphoma) 2). To explore self-care agency and its relationship to CRF. Method: A mixed methods study which incorporated a descriptive, comparative, correlational design and qualitative descriptions of patients’ (n=362) experiences gleaned through open ended questions and use of a diary. The study utilised The Revised Pipers Fatigue Scale, the Appraisal of Self-Care Agency and a researcher developed Fatigue Visual Analogue Scale, Fatigue Self-Care Survey, and Diary. Findings: Having breast cancer, Hodgkin’s lymphoma, non-Hodgkin’s lymphoma; using the strategies of counselling, taking a 20–30 minute nap, resting and sleeping, self-monitoring and complementary therapies were all associated with increased odds of developing fatigue. Increased self-care agency; being in the divorced / separated cohort; being widowed; increased length of time since commencement of chemotherapy; engagement in exercise, and socializing were associated with a reduced risk of developing fatigue. Females had 20% higher fatigue levels than males (p=<.001). Receiving support was the strategy used most frequently and rated most effective. Fatigue was very problematic and distressing, four key qualitative categories emerged: the behavioural impact, affective impact, the sensory impact, and the cognitive impact. Keeping a diary was considered very beneficial and cathartic. Conclusions: Fatigue severely impacted on the daily lives of patients undergoing chemotherapy. There are a range of self-care strategies that patients should be encouraged to use e.g. exercise, socializing, and enhancement of psychological well-being. The enhancement of self-care agency and use of diaries should also be considered.

Becoming a father of a child with an intellectual disability- a narrative inquiry of Irish fathers’ stories

Background: This thesis explored men’s experiences of becoming a father of a child with an intellectual disability in the early years. In Ireland, it is estimated that there are almost 97% (n= 9,914) children with intellectual disabilities living at home in the care of parents, siblings, relatives or foster parents. While mothers and fathers are the primary caregivers, mothers’ experiences are well documented in comparison to the dearth of reports on fathers’ experiences. This descriptive narrative study aims to redress this gap in knowledge and understanding of men’s experiences of becoming a father of a child with an intellectual disability in the early years. Method: Narrative inquiry was employed for this study as it allows stories told by fathers to be collected as a means of exploring men’s transition to becoming a father of a child with an intellectual disability. A sample of 10 fathers of children with intellectual disabilities aged between thirteen months and five years of age were recruited from a large intellectual disability Health Service Provider (HSP) in the South of Ireland. Data were collected through semi-structured interviews which were audio-recorded, transcribed, and analysed using a narrative thematic approach. Findings: Findings are presented in four themes: i) ‘becoming a father’, ii) ‘something wrong with my child’, iii) ‘entering the world of disability’ and iv) ‘living a different life’. For all 10 fathers the time of being told that their child had an intellectual disability was laden with negative emotional responses irrespective of whether the diagnosis was at birth or more gradual over the child’s early developmental period. When fathers found out that ‘something was wrong’ they spoke of ‘moving on’ and entering the world of disability. In their narratives, becoming the father of a child with an intellectual disability had changed their lives and would inevitably change their futures. Fathers’ positivity was clearly evident with many fathers identifying that the diagnosis of their child with an intellectual disability was not a life ending event but rather a life changing event. Conclusions: Healthcare professionals have a critical role in supporting fathers during the transition to becoming a father of a child with an intellectual disability. Factors which require consideration include recognising that each father’s experience is unique; that fathers require support; and that fathers achieve personal growth because of their experiences of their transition to becoming a father of a child with an intellectual disability in the early years.

A qualitative analysis of parental coping with an early diagnosis of hearing loss in Ireland

The recent implementation of Universal Neonatal Hearing Screening (UNHS) in all 19 maternity hospitals across Ireland has precipitated early identification of paediatric hearing loss in an Irish context. This qualitative, grounded theory study centres on the issue of parental coping as families receive and respond to (what is typically) an unexpected diagnosis of hearing loss in their newborn baby. Parental wellbeing is of particular concern as the diagnosis occurs in the context of recovery from birth and at a time when the parent-child relationship is being established. As the vast majority of children with a hearing loss are born into hearing families with no prior history of deafness, parents generally have had little exposure to childhood hearing loss and often experience acute emotional vulnerability as they respond to the diagnosis. The researcher conducted in-depth interviews primarily with parents (and to a lesser extent with professionals), as well as a follow-up postal questionnaire for parents. Through a grounded theory analysis of data, the researcher subsequently fashioned a four-stage model depicting the parental journey of receiving and coping with a diagnosis. The four stages (entitled Anticipating, Confirming, Adjusting and Normalising) are differentiated by the chronology of service intervention and defined by the overarching parental experience. Far from representing a homogenous trajectory, this four-stage model is multifaceted and captures a wide diversity of parental experiences ranging from acute distress to resilient hopefulness