Suffering: a relatively unexplored phenomenon among family caregivers of non-institutionalized patients with cancer

Suffering is a phenomenon with physical and emotional components. Although several studies have drawn attention to the needs of, and demands placed on families who provide care for patients with a diagnosis of cancer at home, few have discussed the suffering which many of these caregivers experience. This paper will illustrate the phenomenon of suffering as seen in the responses made by family caregivers of patients with cancer. Eighty-three family caregivers drawn from a probability sample of patients with a diagnosis of cancer were interviewed in their homes to determine needs they encountered in their caregiving roles. The caregivers consisted of 43 males and 40 females, with mean ages of 53 and 54 years respectively. Families not only identified their needs, they also indicated several areas which were for them sources of suffering. The findings revealed that family suffering often stemmed from fear of loneliness; uncertainty about the future (their own and that of the patients); lifestyle disruption; communication breakdown; lack of support; and their sense of helplessness. These findings suggest that health professionals, particularly nurses, who work with families in their homes, must be alert and sensitive to cues and circumstances which could indicate suffering, and in so doing, take the necessary steps to ameliorate their situation.     

Challenges in geriatric oral health research methodology concerning caregivers of cognitively impaired elderly adults

Little is known about oral health care behaviors of community-dwelling, cognitively impaired elderly (CIE) persons. Few studies have been conducted regarding the actual provision of oral care for CIE persons or the attitudes and concerns about oral health among their caregivers. The CIE person's ability to perform self-care decreases over time, and the role of the caregiver in daily oral care becomes increasingly important. The purpose of this pilot study was to explore the attitudes toward oral health and identify related concerns among caregivers who care for community-dwelling CIE persons. Caregivers were surveyed by means of a self-administered, mailed questionnaire. To maintain confidentiality, an intermediary was used for recruitment and data collection. Overall, 148 caregivers were invited by an intermediary to participate in the survey; only 21 (14%) consented to participate and returned the questionnaire. This paper discusses some of the numerous methodological challenges identified when an attempt was made to survey caregivers' attitudes toward and barriers to providing oral care for a dependent CIE.     

A comparison of the stressors experienced by parents of intubated and non-intubated children

When children are ill enough to require admission to paediatric intensive care, parents may become distressed about their child's medical condition and this distress may be compounded by the unfamiliar nature of the highly technological environment Parents of children who are sick enough to warrant intubation are particularly likely to be exposed to a frightening array of technological equipment Seventy-one parents of intubated and non-intubated children completed the Parental Stressor Scale Paediatnc Intensive Care Unit (PSS PICU) Overall the findings suggest that parents were most distressed (a) by the painful procedures to which their children were subjected, (b) by the sights and sounds of the intensive care unit and (c) by their children's reactions to intensive care The behaviour of staff towards parents and the way that staff communicated with them caused the least distress When the levels of stress reported by parents of intubated children were compared with those reported by parents of non-intubated children, different patterns of stress were found Painful procedures were a source of greater stress to parents of intubated children whereas the behaviour of staff and the children's reactions to the intensive care experience caused greater stress to the parents of the non-intubated children In general the findings suggest that the needs of parents of non-intubated children are being overlooked, with staff focusing more of their attention on the parents of intubated children