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Biomedical subjects

Guy A M Widdershoven

Publications and source records attributed to Guy A M Widdershoven.

12 recordsLinked to original sources
PubMed2006

Between control and freedom in the care for persons with Prader-Willi syndrome: an analysis of preferred interventions by caregivers.

OBJECTIVE: The present study examined caregivers' preferences for intervention strategies in dealing with the dilemma of respecting autonomy of intellectually disabled persons versus providing high-quality care. METHODS: Twenty-four parents and 14 professional caregivers of persons with Prader-Willi syndrome were asked to rate four different kinds of intervention strategies according to their preferred way of dealing with 8 presented cases. RESULTS: In general, caregivers preferred to intervene more actively in eating problems compared to behavioural problems, more in acute than in chronic situations, and more in situations at home than in community-based settings. Significant differences were found between parents and professionals. CONCLUSION: Parents and professionals prefer intervening above laissez-faire. Parents prefer active intervention stronger than professionals. PRACTICE IMPLICATIONS: Awareness of various intervention strategies can help caregivers to develop a practice that does justice to the need for intervention on the one hand, and the possibility of using a variety of intervention strategies on the other hand. Communication about intervention strategies might foster understanding between professional caregivers and parents and improve mutual cooperation.

Adolescent↗
PubMed2006

Do caregivers' experiences correspond with the concerns raised in the literature? Ethical issues relating to anti-dementia drugs.

BACKGROUND: The use of Cholinesterase inhibitors (ChE-Is) has raised debate in the literature on the ethical issues of drug treatment in dementia patients. These issues concern the quality of life of dementia patients and the process of decision-making regarding the use of ChE-Is. We interviewed caregivers of patients with dementia, focussing on issues of quality of life and the process of decision-making regarding the use of anti-dementia drugs. AIM: The aim of this article is to explore whether the ethical concerns raised in the literature are actually in line with experiences in the daily practice of dementia care. METHODS: Qualitative data that have been collected by semi-structured interviews with 12 caregivers of patients who (had) used ChE-Is. RESULTS: The results seem to indicate that theoretical considerations should be modified in the light of the reported experiences of caregivers. For example, problematic consequences of an early diagnosis and the creation of unreasonable hope did not appear in the study. Also problems concerning the rising awareness of cognitive decline were not found. CONCLUSION: In the interest of an ongoing ethical debate on the development and use of anti-dementia drugs it is important to further specify theoretical issues and to conduct empirical research into the practice of decision making and to get more insight in the perspectives of the patients using anti-dementia medicines themselves.

Aged↗
PubMed2006

Moral deliberation in psychiatric nursing practice.

Moral deliberation has been receiving more attention in nursing ethics. Several ethical conversation models have been developed. This article explores the feasibility of the so-called CARE (Considerations, Actions, Reasons, Experiences) model as a framework for moral deliberation in psychiatric nursing practice. This model was used in combination with narrative and dialogical approaches to foster discourse between various stakeholders about coercion in a closed admission clinic in a mental hospital in the Netherlands. The findings demonstrate that the CARE model provides a substantial framework for structuring moral deliberations. Narratives and dialogue are useful tools for broadening issues in conversations, to engage various stakeholders (including patients), and to gain shared understandings.

Attitude of Health Personnel↗
PubMed2005

Two women with multiple sclerosis and their caregivers: conflicting normative expectations.

It is not uncommon that nurses are unable to meet the normative expectations of chronically ill patients. The purpose of this article is to describe and illustrate Walker's expressive-collaborative view of morality to interpret the normative expectations of two women with multiple sclerosis. Both women present themselves as autonomous persons who make their own choices, but who also have to rely on others for many aspects of their lives, for example, to find a new balance between work and social contacts or to find work. We show that their narratives of identity, relationship and value differ from the narratives that others use to understand and identify them. Since identities, relationships and values give rise to normative expectations, in both cases there is a conflict between what the women expect of their caregivers and vice-versa. The narratives also show that two similar persons with multiple sclerosis may need very different care. This implies that nurses caring for such persons should listen carefully to their stories and reflect on their own perceptions of self.

Adult↗
PubMed2004

The needs of terminally ill patients at home: directing one's life, health and things related to beloved others.

This article describes the results of a grounded theory study among terminally ill patients (with a life expectancy of less than three months) at home (n = 13, aged 39-83). The most commonly recurring theme identified in the analysis is 'directing', in the sense of directing a play. From the perspectives of patients in our study, 'directing' concerns three domains: 1) directing one's own life; 2) directing one's own health and health care; and 3) directing things related to beloved others (in the meaning of taking care of beloved ones). The patient's directing is affected by impeding and facilitating circumstances: the patient's needs and problems in the physical, psychological and existential/spiritual domain, and the support by family members and providers. Supporting patients and families, stimulating the patients' directing, giving attention to all domains of needs and counselling patients' families in the terminal phase are issues that need attention and warrant further investigation.

Adult↗
PubMed2003

Vulnerability of family caregivers in terminal palliative care at home; balancing between burden and capacity.

This paper reports on a grounded theory interview-based study with 13 family members aged 28-80 years caring for terminally ill people at home (with a life expectancy of 3 months or less) in the Netherlands. The project was approved by the ethics committee of the Maastricht University Hospital. The aim of this study was to explore the experiences of family caregivers, their needs for home care, and which health services they receive. Data were analysed using the constant comparative method. 'Vulnerability' was identified as the core category. Caring for a terminally ill person at home requires continuous balancing between care burden and capacity to cope. Whether or not the carer will succeed in keeping in optimum balance is dependent on a number of factors impinging on the caregiver's vulnerability. Care burden, restricted activities, fear, insecurity, loneliness, facing death, lack of emotional, practical and information-related support were identified from the data as factors having the potential to increase the caregiver's vulnerability, and may be risk factors for fatigue and burnout. Continuing previous activities, hope, keeping control, satisfaction and good support are factors which may decrease the caregiver's vulnerability, and may protect against fatigue and burnout. The experiences of the caregivers in our study showed that the support from informal and professional caregivers was not sufficient. Education and practical tools may make professionals more sensitive for the vulnerable position of family caregivers, even when these caregivers do not show their vulnerability.

Adult↗
PubMed2002

Compliance in a randomized controlled trial: the implementation of emotion-orientated care in psycho-geriatric facilities.

AIM: The aim of this study was to gain insight into compliance with the introduction of a new care model [emotion-orientated care (EOC)] as part of an intervention study (RCT) in psycho-geriatric care. The success of the implementation (compliance), as well as the expectations and experiences concerning the training were studied. METHODS: Observations were conducted in four intervention homes and four control homes, and care-plans of residents were also analysed to see whether the implementation had succeeded. Semi-structured interviews were conducted with four persons in each of the four intervention sites (a total of 16 interviews) to study the experiences with the training and implementation. FINDINGS: The observations showed no clear differences between intervention and control homes with regard to the interactions between residents and professional caregivers. Analysis of the reporting systems revealed differences within, as well as between, the intervention and control homes. The content of the reports showed no differences between the intervention and control homes. The interviewees had different expectations of the EOC training, depending on their disciplinary background. The caregivers regarded the training as a confirmation of their current practice. They experienced some changes at the individual level and some of them reported that the co-operation between units had become better. At the home-level no changes were reported. Every interviewee indicated that the implementation of EOC was difficult and laborious and that there were (mainly organizational) obstacles that could hinder the implementation of the EOC training. CONCLUSIONS: Observations and the analysis of the reporting systems indicated that there was no clear difference between intervention homes and control homes as to the actual implementation of the intervention, indicating that the compliance with the new care model was not optimal. The interviews gave some insight into factors that caused lack of compliance.

Aged↗
PubMed2002

[Ethical aspects of anti-Alzheimer drugs: experiences of caregivers].

The development and use of acetylcholinesterase inhibitors raise ethical issues. Ethical issues concern the consequences of an early diagnosis, the creation of unreasonable hope, possible negative effects of rivastigmine use, problems concerning stopping with rivastigmine, the patient role in decision-making and the possibility of conflicting interests. Within the ethical literature, hypotheses about the meaning of this drug for the patients have been formulated. This research aimed to investigate the experiences of caregivers of patients who used rivastigmine. The data have been collected by semi-structured interviews. The study included 12 caregivers of rivastigmine users. The--preliminary--results seem to indicate that theoretical considerations should be modified in the light of the experiences of caregivers. For example, problematic consequences of an early diagnosis and the creation of unreasonable hope did not appear in this study. Also problems concerning the rising awareness of cognitive decline were not found. In the interest of a further ethical debate concerning the development and use of antidementia drugs it is important to modify these theoretical considerations.

Aged↗