Obstructive sleep apnoea syndrome (OSAS) is independently associated with an increased risk for hypertension and cardiovascular disease. Continuous positive airway pressure (CPAP) can reduce mortality and morbidity, but low compliance rates are seen.
To explore and describe the experiences of CPAP-treatment in a young male patient with severe OSAS during a 6-month period from the couple's perspective. METHODS AND THE CASE: A single case study with a phenomenographic approach was employed. Diagnostic procedures of OSAS and initiation of treatment with Auto-CPAP, humidifier and a nasal mask were performed during 4 visits. Conceptions were collected at 4 different occasions during the 6-month period (before, and 2 weeks, 3 months, and 6 months after treatment initiation) by means of interviews with a 33-year old male patient and his female partner.
Totally 17 different structural aspects were found to fluctuate during the 6-month period in relation to; influence of stressors, social reactions and adaptation to increase compliance.
An increased knowledge about the influence of stressors, the social reactions, and the adaptation can help healthcare personnel to identify and better understand concerns of other patients and spouses during different time phases of the initial 6-month period of CPAP-treatment.
Child and Adolescent Psychiatric Department, Mental Health Hospital and University Clinic, Region of Southern Denmark, University of Southern Denmark , Sdr. Boulevard 29, DK-5000 Odense C , Denmark.
The aim of the study was to identify risk factors for significant changes in emotional and behavioural problem load in a community-based cohort of Danish children aged 9-16 years, the risk factors being seven parental and two child-related adverse life events.
Data on emotional and behavioural problems was obtained from parents filling in the Child Behavior Checklist (CBCL) when the child was 8-9 and again when 15 years old. Data on risk factors was drawn from Danish registers. Analysis used was logistic regression for crude and adjusted change.
Parental divorce significantly raised the odds ratio of an increase in emotional and behavioural problems; furthermore, the risk of deterioration in problem behaviour rose significantly with increasing number of adverse life events. By dividing the children into four groups based on the pathway in problem load (increasers, decreasers, high persisters and low persisters), we found that children with a consistently high level of behavioural problems also had the highest number of adverse life events compared with any other group.
Family break-up was found to be a significant risk factor. This supports findings in previous studies. The fact that no other risk factor proved to be of significance might be due to lack of power in the study. Children experiencing high levels of adverse life events are at high risk of chronic problem behaviour. Thus these risk factors should be assessed in daily clinical practice.
Division of Nephrology, Department of Medicine, Karolinska Institutet, Department of Physical Therapy, Karolinska University Hospital, Sweden. susanne.heiwe@karolinska.se
Pain is a common problem for patients with autosomal dominant polycystic kidney disease (ADPKD). Knowledge about patients' experience of the pain, pain management, and pain's effect on everyday life is, however, limited. In clinical practice there is a need to improve the care of these patients. To be able to do so, information about how the disease and its pain affect the patients is required. This study explores patients' experience of living with ADPKD and its pain. The findings are based on in-depth semistructured interviews. The participants were 22 patients with ADPKD. The data were transcribed and analyzed by using phenomenology. Findings showed that the patients experienced limitations in their everyday life due to inexplicable and unpredictable pain and fatigue. Also, pain management was experienced as suboptimal and pain was seldom discussed at health care appointments. Emotional distress concerning the hereditary nature of the disease was also present. Health care providers need to increase their focus on pain and pain management to reduce the disease's intrusion in patients' everyday life. Also, patients and people in the patients' immediate surroundings need to be given information and education about the disease and its pain as well as the opportunity to talk about their worries concerning heredity. By implementing the findings of the present study when meeting a patient with ADPKD, improved patient satisfaction and health-related quality of life could be accomplished.
The number of medically fragile children cared for at home is increasing; however, there are few studies about the professional support these families receive in their homes. The aim of the study was to understand the meanings that parents had about the support they received from health care professionals who offered care for their ventilator-assisted child in the family home. A phenomenological-hermeneutic method was used. Data included the narratives of five mother-father couples living in Sweden who were receiving professional support for their ventilator-assisted child. The findings indicate that receiving professional support meant being at risk of and/or exposed to the exercise of control over family privacy. The professional support system in the families' homes worked more by chance than by competent and sensible planning. In good cases, caring encounters were characterized by a mutual relationship where various occupational groups were embraced as a part of family life. The findings are discussed in light of compassionate care, exercise of power, and the importance of holistic educational programs.
Little is known about experiences with receiving home nursing care when old, living in a rural area, and suffering from end-stage cancer. The aim of this study was thus to investigate bereaved family members' perceptions of suffering by their older relatives when receiving palliative home nursing care. Qualitative semi-structured interviews were conducted with 10 family members, in Norway during autumn 2015, and directed content analysis guided by Katie Eriksson's theoretical framework on human suffering was performed upon the data. The two main categories identified reflected expressions of both suffering and well-being. Expressions of suffering were related to illness, to care and to life and supported the theory. Expressions of well-being were related to other people (e.g. familiar people and nurses), to home and to activity. The results indicate a need to review and possibly expand the perspective of what should motivate care. Nursing and palliative care that become purely disease and symptom-focused may end up with giving up and divert the attention to social and cultural factors that may contribute to well-being when cure is not the goal.
There is a lack of studies of the size of burden associated with informal care giving in psychosis.
To evaluate the objective and subjective burden of informal care giving to patients with psychoses, and to compare a diary and recall method for assessments of objective burden.
Patients and their informal caregivers were recruited from nine Swedish psychiatric outpatient centres. Subjective burden was assessed at inclusion using the CarerQoL and COPE index scales. The objective burden (time and money spent) was assessed by the caregivers daily using diaries over four weeks and by recall at the end of weeks 1 and 2.
One-hundred and seven patients (53% females; mean age 43 ± 11) and 118 informal caregivers (67%; 58 ± 15 years) were recruited. Informal caregivers spent 22.5 hours/week and about 14% of their gross income on care-related activities. The time spent was underestimated by two to 20 hours when assessed by recall than by daily diary records. The most prominent aspects of the subjective burden were mental problems.
Despite a substantial amount of time and money spent on care giving, the informal caregivers perceived the mental aspects of burden as the most troublesome. The informal caregiver burden is considerable and should be taken into account when evaluating effects of health care provided to patients with psychoses.
Studies of patients who are terminally ill consistently identify strong associations between "sense of burden to others" and marked end-of-life distress. However, little research has addressed the issue of burden to others among patients nearing death. The aim of this study was to carefully examine "burden to others" and clarify its relationship with various psychosocial, physical, and existential issues arising in patients who are terminally ill. A cohort of 211 patients with end-stage cancer was assessed, using an assortment of validated psychometrics to document psychosocial, physical, and existential aspects of their end-of-life experience. This included an assessment of their sense of "burden to others." Forty percent of participants indicated a negligible sense of burden to others, scoring within the lowest quarter on an ordinal measure of "burden to others;" 25% scored within the second lowest quarter; 12% within the third quarter; and 23% within the highest or most severe range. The most highly correlated variables with "sense of burden to others" included depression (r=0.460; df=201, P
The purpose of this longitudinal study was to test a model of the relationships among social economic status, gender, severity of impairment, stress emotions, coping strategies and psychological well-being. A sample of 78 elderly women and men, 60 years old or over, and diagnosed as having rheumatoid arthritis since mid-life, volunteered to participate in the study. Twelve months later, 64 of these elderly people were re-interviewed. Path analysis was used to examine the empirical import of the Lazarus and Folkman theory of stress and coping. Analysis of variance for repeated measures was used to test for changes over time among the study variable. A consistent relationship between severity of impairment, emotions, coping strategies and psychological well-being emerged from the data at time one and time two. Choice of coping strategies and psychological well-being were primarily influenced by emotions. The best predictor of psychological well-being at both time periods was the stress emotion of challenge. At both time periods, optimistic and self-reliant coping strategies were used most often and evasive and emotive strategies the least.
The aim of this descriptive exploratory study was to determine the perspectives of parents and children with cancer on a home chemotherapy program. Qualitative analyses were used to organize data from 24 parents and 14 children into emerging themes. Themes included (1) financial and time costs, (2) disruption to daily routines, (3) psychological and physical effects, (4) recommendations and caveats, and (5) preference for home chemotherapy. When home chemotherapy was compared with hospital clinic-based chemotherapy, parents reported fewer financial and time costs and less disruption to their work and family schedules, and children reported more time to play/study, improved school attendance, and engagement in normal activities. Although some parents felt more secure with hospital chemotherapy, most found it more exhausting and stressful. At home, children selected places for their treatment and some experienced fewer side effects. Although some coordination/communication problems existed, the majority of parents and children preferred home chemo-therapy. Home chemotherapy treatment is a viable, acceptable, and positive health care delivery alternative from the perspective of parents and children with cancer.
