Ireen M. Proot

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 ones own life; 2) directing ones own health and health care; and 3) directing things related to beloved others (in the meaning of taking care of beloved ones). The patients directing is affected by impeding and facilitating circumstances: the patients 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.

Patient autonomy during rehabilitation: the experiences of stroke patients in nursing homes.

This article describes the results of a grounded theory study among stroke patients (N=17, aged 50-85) in rehabilitation wards in nursing homes. Patient autonomy (dimensions: self-determination, independence and self-care) increases during rehabilitation due to patient factors (conditions and strategies of patient) and environmental factors (nursing home and strategies of health professionals and family). During rehabilitation patients are in a state of transition regarding autonomy: patients need support to enhance autonomy, gradually regain autonomy, and thereby need less support. Although facilitating environmental factors were discovered, patients also experienced constraining factors regarding patient autonomy. Health professionals should give more attention to self-determination and independence; the nursing home should offer stroke patients more opportunities to do familiar activities autonomously.

Actual interaction and client centeredness in home care.

The purpose of this study is to explore client-nurse interaction from a client perspective with respect to client-centered care. A grounded theory study was conducted with Dutch clients who were chronically ill and receiving home care. Data were collected by focus interviews with 8 client informants, participatory observations with 45 clients, and semistructured interviews with 6 clients. The core category actual interaction was identified. Six patterns of actual interaction were distinguished. Changes in actual interaction could be related to changes in desired participation by the client and in allowed client participation by the professional. From the clients perspective, client-centeredness means congruence between desired and allowed participation. Congruence was experienced with consent, dialogue, and consuming. Congruence is not necessarily synonymous with promoting patient participation or with doing as the client wants. Ongoing attentiveness, responsiveness, promotion of client autonomy, and being a critical caregiver are recommended.

Facilitating and Constraining Factors on Autonomy: The Views of Stroke Patients on Admission Into Nursing Homes

This article describes a model “changing autonomy” which was developed in a grounded theory study among stroke patients on admission into nursing homes for rehabilitation. Three dimensions of autonomy were identified: self-determination, independence, and self-care. On admission, patients’ conditions (disabilities, multimorbidity, emotional state, and feeling like a layperson) and patients’ strategies (waiting and seeing, and acting as a subordinate) constrain autonomy. Several environmental factors facilitate patient autonomy. The nursing home sustains patient autonomy by providing a hopeful atmosphere and room for autonomy. The health professionals facilitate autonomy by giving therapy, support and information, attentiveness and respect, paternalism and teamwork. Facilitating strategies of the family encompass emotional and instrumental support. Care routines, lack of privacy, an unfamiliar environment, waiting periods, boredom, and lack of information were identified as constraining environmental factors. Developing guidelines and multidisciplinary courses regarding the approach to patient autonomy on admission is recommended.

Supporting Stroke Patients’ Autonomy During Rehabilitation

In a qualitative study, 22 stroke patients undergoing rehabilitation in three nursing homes were interviewed about constraints on and improvements in their autonomy and about approaches of health professionals regarding autonomy. The data were analysed using grounded theory, with a particular focus on the process of regaining autonomy. An approach by the health professionals that was responsive to changes in the patients’ autonomy was found to be helpful for restoration of their autonomy. Two patterns in health professionals’ approach appeared to be facilitatory: (1) from full support on admission through moderate support and supervision, to reduced supervision at discharge; and (2) from paternalism on admission through partial paternalism (regarding treatment) to shared decision making at discharge. The approach experienced by the patients did not always match their desires regarding their autonomy. Support and supervision were reduced over time, but paternalism was often continued too long. Additionally, the patients experienced a lack of information. Tailoring interventions to patients’ progress in autonomy would stimulate their active participation in rehabilitation and in decision making, and would improve patients’ preparation for autonomous living after discharge.

Stroke patients’ needs and experiences regarding autonomy at discharge from nursing home

In this qualitative study stroke patients rehabilitating in nursing homes experienced an increase in their autonomy (particularly in self-determination, independence and self-care) in the last weeks before discharge. The change in autonomy was found to be related to regained abilities and self-confidence, and to patients strategies (e.g. taking initiative, being assertive). The attitude of health professionals and family, and the nursing home could influence patient autonomy. Overprotection, paternalism, care routines and an inconsistent approach constrain autonomy. Conversely, attentiveness, tailored interventions and a respectful dialogue facilitate autonomy, like moderate instrumental and emotional support by the family. Nursing homes can enhance autonomy by minimizing care routines and by providing room for doing activities independently and privately. Attention to patient autonomy may improve patients active participation in rehabilitation, quality of life, and autonomous living after discharge. Multidisciplinary guidelines based on the results may increase attention to the stroke patients autonomy and stimulate a team approach.

Client-Centered Home Care: Balancing Between Competing Responsibilities

This study explores and describes the perceptions of nurses with respect to everyday client-centered care. A grounded theory study was conducted with 10 Dutch nurses and auxiliary nurses giving home care to chronically ill clients. Participatory observations and semistructured interviews were held. Nurses perceived roles and responsibilities competing with the role as a responsive professional to the client demand: a critical professional, developer of client competencies, individual, and employee. Strategies in balancing between competing responsibilities were distinguished: pleasing, dialoguing, directing, and detaching. Directing (related to impaired client competencies) and detaching (related to organizational barriers) were also used as second choice strategies. Effectively balancing between competing responsibilities was seen in dialoguing and directing as second choice. Conditions identified related to these strategies are awareness of, and responsibility taking for competing responsibilities. Recommendations for practice concern a care relationship and a dialogue with the client, critical ethical reflection, professional autonomy, self-assertiveness and organizational support.

Autonomy in Stroke Rehabilitation: the perceptions of care providers in nursing homes

Twenty-seven health care providers from three nursing homes were interviewed about the autonomy of stroke patients in rehabilitation wards. Data were analysed using the grounded theory method for concept development recommended by Strauss and Corbin. The core category ‘changing autonomy’ was developed, which identifies the process of stroke patients regaining their autonomy (dimensions: self-determination, independence and self-care), and the factors affecting this process (conditions (i.e. circumstances) and strategies of patients; strategies of care providers and families; and the nursing home). Teamwork on increasing patient autonomy is recommended, which can be stimulated by multidisciplinary guidelines and education, and by co-ordination of the process of changing autonomy.

The Maastricht social participation profile: development and clinimetric properties in older adults with a chronic physical illness

PurposeTo develop and test the Maastricht Social Participation Profile (MSPP), an instrument measuring the actual social participation by older adults with a chronic physical illness, in accordance with their own definition of social participation.MethodsThe development process consisted of a number of steps, ending with a field test in two waves (nxa0=xa0412 and nxa0=xa0125) among a random sample of people older than 59xa0years with either COPD or diabetes mellitus. Reproducibility was evaluated with intraclass correlation coefficients (ICCs) and smallest real differences at group level (SRDsgroup). Convergent and discriminant validity were evaluated with Pearson correlation coefficients between the MSPP and the Frenchay Activities Index (FAI).ResultsThe MSPP consists of four indices: consumptive participation, formal social participation, informal social participation-acquaintances and informal social participation-family. Each index measured diversity and frequency of participation. ICCs ranged between 0.63 and 0.83. SRDsgroup ranged between 0.05 and 0.09. Convergent and discriminant validity were supported by the correlations between the MSPPfrequency and the FAI.ConclusionsThe MSPP has good validity and acceptable reproducibility. Its distinguishing features are its focus on actual social participation and the possibility to calculate both diversity and frequency scores.

Development and psychometric properties of the Maastricht Personal Autonomy Questionnaire (MPAQ) in older adults with a chronic physical illness

AbstractPurposenTo develop and test the Maastricht Personal Autonomy Questionnaire (MPAQ), an instrument measuring personal autonomy of older adults with a chronic physical illness in accordance with their experience of autonomy. Achievement of personal autonomy is conceptualized as correspondence between the way people’s lives are actually arranged and the way people want to arrange their lives.MethodsA field test was conducted in three waves (nxa0=xa0412, nxa0=xa0125 and nxa0=xa0244) among a random sample of people older than 59xa0years with either chronic obstructive pulmonary disease or diabetes mellitus. Construct validity, reproducibility and responsiveness were evaluated.ResultsThe MPAQ entailing 16 items consists of three scales: degree of (personal) autonomy, working on autonomy and dilemmas. Construct validity was largely supported by confirmatory factor analysis and correlations between the MPAQ and other instruments. Intraclass correlation coefficients ranged from 0.61 to 0.80 and SRDsgroup from 0.10 to 0.13. Mean change was larger (0.54) than was SRDgroup (0.11) in patients who had deteriorated, but smaller in patients who had improved (0.07).ConclusionsThe MPAQ has good content and construct validity and moderate reproducibility. Responsiveness is weak, although better for deterioration than for improvement.