Living with Illness : psychosocial challenges

"Living with Illness: Psychosocial Challenges focuses on developing and strengthening understanding of the illness experience. It encourages students to critically appraise conventional approaches to understanding and caring for those who are ill, to empower readers to off true holistic care and to, where appropriate, change nursing practice in light of current research findings. Traditionally nurses have drawn on knowledge from sociology and psychology as two separate but related disciplines to nursing, leaving the beginning level nurse to relate, integrate and translate knowledge gained into nursing practice. Living with Illness combines, in a unique way, sociological and psychological perspectives to creatively represent psychosocial knowledge that is innovative and directly applicable to contemporary nursing practice."-publisher website

Successful Aging with Illness

In twenty years almost one in four Canadians will be over the age of 65. How successfully these people age will influence their quality of life and contribute to their physical health. Illness and disease are frequent components of aging; however, ‘successful aging’ research normally excludes people with illness. Older people living with illness, even life threatening illness, often self-report a good quality of life and continue to experience psychological well-being and a significant engagement in social life. This dissertation uses a three manuscript approach to examine successful aging among people with illness. The first manuscript employed a scoping review to examine the models used in recent successful aging research, compiling the most frequently used constructs which included: engagement, optimism and/or positive attitude, resilience, spirituality and/or religiosity, self-efficacy and/or self-esteem, and gerotranscendence. The second manuscript utilized data gathered via interviews (online or in person) with people over the age of 65 years living with illness. The majority of these participants reported success in aging; only resilience was predictive in the binomial regression analysis. The third manuscript examined the role of social determinants of health on successful aging. The analysis revealed that disengagement from community-activities showed a significant association with higher self-reported successful aging. The best fitting model for predicting rate of successful aging with illness was a linear combination of participants’ ageism score and community activity score, while controlling for gender and age. When considered together, the results from these three manuscripts suggest that successful aging can be experienced by older adults aging with illness. And that, among these older adults, resilience, community interaction and ageism may all play a part in determining the extent to which aging is experienced as successful. Recommendations include the suggestion that we embrace the idea that people with illness can self-define as successful agers. Further, since some of the associated constructs (e.g. resilience) can be fostered, successful aging could be bolstered by education or programs to build skills along with the usual treatment modalities for the illnesses that co-exist.

A longitudinal study of economic pressure among people living with a progressive neurological illness

Objectives: Previous research has examined costs associated with progressive neurological illnesses, but has not examined predictors of economic pressure, or quality of life (QOL). The aim of the current study was to examine the predictors of both economic pressure and QOL among people with a range of progressive neurological illness.

Method: Participants were 257 people with motor neurone disease, Huntington’s disease, multiple sclerosis and Parkinson’s.

Results: High levels of cut backs in spending predicted economic pressure for all groups. Economic pressure predicted QOL at 12-month follow-up for all groups except Parkinson’s. For Parkinson’s, predictors of QOL were long duration of illness, illness-related expenses and cut backs in spending. Cut backs in spending, and not income or expenses, were the most important predictor of economic pressure. QOL was predicted by high levels of economic pressure for most of the illness groups.

Discussion: The implications of these findings are discussed. They suggest that cut backs in spending, as opposed to income and expenses, are important factors to focus on assisting people to adjust to the changes to their financial situation that frequently occurs after developing one of these progressive neurological illnesses.

A longitudinal study of quality of life among people living with a progressive neurological illness

This study investigated predictors of quality of life (QOL) of people with progressive neurological illnesses. Participants were 257 people with motor neurone disease (MND), Huntington’s disease (HD), multiple sclerosis (MS), or Parkinson’s. Participants completed questionnaires on two occasions, 12 months apart. There was an increase in severity of symptoms for people withMND, negative mood for people with HD and Parkinson’s, and social support satisfaction for people with MS. Regression analyses were conducted to determine predictors of QOL for each group. Predictor variables were length of illness, symptoms (physical symptoms, control over body, cognitive symptoms and psychological symptoms), mood, relationship satisfaction and social support. Predictors of QOL were severity of symptoms for people withMND, HD and MS; negative mood for people withMNDand Parkinson’s; and social support satisfaction for people with MS. These results demonstrate the importance of illness severity and mood in predicting QOL, but also indicate differences between illness groups. The limited role played by social support and relationship is a surprising finding from the current study.

The illness experiences of patients and their family members living with congestive heart failure

Purpose. To investigate and understand the illness experiences of patients and their family members living with congestive heart failure (CHF). ^ Design. Focused ethnographic design. ^ Setting. One outpatient cardiology clinic, two outpatient heart failure clinics, and informants' homes in a large metropolitan city located in southeast Texas. ^ Sample. A purposeful sampling technique was used to select a sample of 28 informants. The following somewhat overlapping, sampling strategies were used to implement the purposeful method: criterion; typical case; operational construct; maximum variation; atypical case; opportunistic; and confirming and disconfirming case sampling. ^ Methods. Naturalistic inquiry consisted of data collected from observations, participant observations, and interviews. Open-ended semi-structured illness narrative interviews included questions designed to elicit informant's explanatory models of the illness, which served as a synthesizing framework for the analysis. A thematic analysis process was conducted through domain analysis and construction of data into themes and sub-themes. Credibility was enhanced through informant verification and a process of peer debriefing. ^ Findings. Thematic analysis revealed that patients and their family members living with CHF experience a process of disruption, incoherence, and reconciling. Reconciling emerged as the salient experience described by informants. Sub-themes of reconciling that emerged from the analysis included: struggling; participating in partnerships; finding purpose and meaning in the illness experience; and surrendering. ^ Conclusions. Understanding the experiences described in this study allows for a better understanding of living with CHF in everyday life. Findings from this study suggest that the experience of living with CHF entails more than the medical story can tell. It is important for nurses and other providers to understand the experiences of this population in order to develop appropriate treatment plans in a successful practitioner-patient partnership. ^

A qualitative investigation into the different health experiences of people living with type II diabetes, in the rural environments

Study Rationale The objective of the study was to explore if and how rural culture influences type II diabetes management and to better understand the social processes that rural people construct in coping with diabetes and its complications. In particular, the study aimed to analyse the interface and interactions between rural people with type II diabetes and the Australian health care system. Theoretical framework and methods The research applied constructivist grounded theory methods within an interpretive interactionist framework. Data from 39 semi-structured interviews with rural and urban people with type II diabetes plus a mix of rural health care providers were analysed to develop a theoretical understanding of the social processes that define diabetes management in that context. Results The analysis suggests that although type II diabetes imposes limitations that require adjustment and adaptation these processes are actively negotiated by rural people within the environmental context to fit the salient social understandings of autonomy and self-reliance. Thus people normalised self-reliant diabetes management behaviours because this was congruent with the rural culture. Factors that informed the actions of normalisation were the relationships between participants and health care professions, support and access to individual resources. Conclusions The findings point to ways in which rural self-reliance is conceived as the primary strategy of diabetic management. People face the paradox of engaging with a health care system that at the same time maximises individual responsibility for health and minimises the social support by which individuals manage the condition. The emphasis on self-reliance gives some legitimacy to a lack of prevention and chronic care services. Success of diabetic management behaviours is contingent on relative resources. Where there is good primary care there develop a number of downstream effects including a sense of empowerment to manage difficult rural environmental circumstances. This has particular bearing on health outcomes for people with fewer resources.

The health information practices of people living with chronic health conditions: Implications for health literacy

The reduction of the health literacy concept to a functional relationship with text, does not acknowledge the range of information sources that people draw from in order to make informed decision about their health and treatment. Drawing from two studies that explored how people with two different but complex and life-threatening chronic health conditions, chronic kidney disease and HIV, a socio-cultural understanding of the practise of health literacy is described. Health information is experienced by patients as a chronic health condition landscape, and develops from three information sources; namely epistemic, social and corporeal sources. Participants in both studies used activities that involved orienting, sharing and creating information to map this landscape which was used to inform their decision-making. These findings challenge the traditional conceptions of health literacy and suggest an approach that views the landscape of chronic illness as being socially, physically and contextually constructed. This approach necessitates a recasting of health literacy away from a sole interest in skills and towards understanding how information practices facilitate people becoming health literate.

Active carers: living with chronic obstructive pulmonary disease

It has long been recognised that the majority of care provided in chronic illness comes not from health and social care professionals, but from family and friends. One such illness is chronic obstructive pulmonary disease (COPD), a leading cause of morbidity and mortality in the developed world.To explore the specific care needs of informal caregivers of patients with advanced COPD, interviews were conducted with seven active family caregivers. Interviews were taped, transcribed and content analysed to obtain the caregivers' needs. Results confirm that family caregivers provide direct care with little support and assistance. Participants reported restricted activities of daily living and some emotional distress. There were knowledge deficiencies among caregivers relating to the COPD illness trajectory and little awareness of the potential of palliative care. Family caregivers need social and professional support while caring for a patient at home. This would help to ensure that their physical and emotional health does not suffer. There is a need to devise interventions to ensure family caregivers are supported.

I can't get a breath: experiences of living with advanced chronic obstructive pulmonary disease

This study aims to explore the potential for palliative care among people living with advanced chronic obstructive pulmonary disease (COPD). Individual semi-structured interviews (n=13) were conducted with people who had a diagnosis of advanced COPD and were on optimal tolerated drug therapy, with their breathing volume (forced expiratory volume at less than 30%) or were on long-term oxygen therapy or non-invasion ventilation. Participants raised concerns about the uncertain trajectory of the illness and reported unmet palliative care needs with poor access to palliative care services. For most people, palliative care was associated with end of life; therefore, they were unwilling to discuss the issue. There was a wide acceptance that, medically, nothing more could be done. Findings also suggest that patients had unmet palliative care needs, requiring information and support. The research suggests the need for palliative care to be extended to all (regardless of diagnosis), with packages of care developed to target specific needs.

“A quiet still voice that just touches”: music’s relevance for adults living with life-threatening cancer diagnoses.

Purpose
Music has historically aided health and loss-adaptation, however, cancer patients’ experience of music for self-care is not well understood. This study examines adult cancer patients’ views about music’s role before and after diagnosis.
Methods
Constructivist approach, with grounded theory informed design using convenience, snowball and theoretical sampling. Patients from Australian metropolitan cancer and hospice settings completed demographic questionnaires and participated in semi-structured interviews. Qualitative inter-rater reliability was applied.
Results
Fifty-two patients reported comparable time spent experiencing music pre-post diagnosis. Music may remain incidental; however, many patients adapt music usage to ameliorate cancer’s aversive effects. Patients often draw from their musical lives and explore unfamiliar music to: remain connected with pre-illness identities; strengthen capacity for enduring treatment, ongoing survival (even when knowing “you’re going to die”), or facing death; reframe upended worlds; and live enriched lives. Patients can ascribe human or physical properties to music when describing its transformative effects. Familiar lyrics maybe reinterpreted, and patients’ intensified emotional reactions to music can reflect their threatened mortality. Sometimes music becomes inaccessible, elusive, and/or intensifies distress and is avoided. Families’, friends’ and professionals’ recognition of patients’ altered musical lives and music-based suggestions can extend patients’ use of music for self-care.
Conclusion
Health professionals can support patients by inquiring about their music behaviours and recognising that altered music usage may signify vulnerability. Although commonly recommended, hospital concerts and music broadcasts need sensitive delivery. Patients’ preferred music should be available in diagnostic, treatment and palliative settings because it can promote endurance and life enrichment.

Diabetes Distress: Understanding the Hidden Struggles of Living with Diabetes and Exploring Intervention Strategies

Diabetes Distress is a rational emotional response to the threat of a life-changing illness. Distinct from depression, it is rooted in the demands of diabetes management and is a product of psychological adjustment. Diabetes distress has been found to be significantly associated with HbA1c and self-care, which demonstrates its clinical use in treatment outcomes. Interpersonal factors such as perceived support and protectiveness of partners significantly contribute to elevated distress, suggesting that these are valued areas of focus for interventions. Pioneering large-scale research, DAWN2, gives voices to the families of those with diabetes and reaffirms the need to consider psychosocial factors in routine diabetes care. Structured diabetes education programmes are the most widely used in helping individuals cope with diabetes, but they fail to consider the psychological or interpersonal aspects of diabetes management. Psycho-educational approaches are found to be effective in reducing diabetes distress while also improving HbA1c. Certain limitations in the current literature are discussed, along with future directions. Of utmost importance is the need for health practitioners, irrespective of background, to demonstrate an understanding of diabetes distress and actively engage in discussion with individuals struggling to cope with diabetes; to normalize this and integrate it into routine diabetes practice.