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

PURPOSE: To 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. METHODS: A field test was conducted in three waves (n = 412, n = 125 and n = 244) among a random sample of people older than 59 years with either chronic obstructive pulmonary disease or diabetes mellitus. Construct validity, reproducibility and responsiveness were evaluated. RESULTS: The 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). CONCLUSIONS: The MPAQ has good content and construct validity and moderate reproducibility. Responsiveness is weak, although better for deterioration than for improvement.

End-of-life decisions for people with intellectual disabilities, an interview study with patient representatives.

BACKGROUND: Not much is known about the process of end-of-life decision-making for people with intellectual disabilities. AIM: To clarify the process of end-of-life decision-making for people with intellectual disabilities from the perspective of patient representatives. DESIGN: A qualitative study based on semi-structured interviews, recorded digitally and transcribed verbatim. Data were analysed using Grounded Theory procedures. PARTICIPANTS: We interviewed 16 patient representatives after the deaths of 10 people with intellectual disabilities in the Netherlands. RESULTS: The core category 'Deciding for someone else' describes the context in which patient representatives took end-of-life decisions. The patient representatives felt highly responsible for the outcomes. They had not involved the patients in the end-of-life decision-making process, nor any professionals other than the doctor. The categories of 'Motives' and 'Support' were connected to the core category of 'Deciding for someone else'. 'Motives' refers to the patient representatives' ideas about quality of life, prevention from suffering, patients who cannot understand the burden of interventions and emotional reasons reported by patient representatives. 'Support' refers to the support that patient representatives wanted the doctors to give to them in the decision-making process. CONCLUSIONS: From the perspective of the patient representatives, the process of end-of-life decision-making can be improved by ensuring clear roles and an explicit description of the tasks and responsibilities of all participants. Regular discussion between everyone involved including people with intellectual disabilities themselves can improve knowledge about each other's motives for end-of-decisions and can clarify expectations towards each other.

The use of standard calendar software by individuals with acquired brain injury and cognitive complaints: a mixed methods study.

PURPOSE: To explore the actual use of standard calendar software by people with acquired brain injury (ABI) and healthy individuals. METHOD: Mixed methods design with qualitative and quantitative analyses of the respondents' use of calendar software. Fifteen individuals with ABI and 15 healthy participants were enrolled. Participants were asked to execute five consecutive tasks using standard calendar software, which resembled everyday use of an electronic calendar. RESULTS: The core processes "task execution" and "information processing" were influenced by internal factors (cognitive and emotional processes and fatigue) as well as environmental factors (software features and distractions). Results obtained by qualitative and quantitative methods showed similar reaction patterns in both groups. However, ABI patients had more cognitive problems and showed stronger emotions during task performance than healthy participants. Healthy participants were more successful and needed less time and mental effort to perform a task. CONCLUSIONS: Although ABI patients were able to use standard calendar software, they became upset more easily, needed more effort, became tired sooner and more suddenly. Strategies to support ABI patients in the use of calendar software are suggested from multi-disciplinary perspectives.

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

PURPOSE: To 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. METHODS: The development process consisted of a number of steps, ending with a field test in two waves (n = 412 and n = 125) among a random sample of people older than 59 years with either COPD or diabetes mellitus. Reproducibility was evaluated with intraclass correlation coefficients (ICCs) and smallest real differences at group level (SRDs(group)). Convergent and discriminant validity were evaluated with Pearson correlation coefficients between the MSPP and the Frenchay Activities Index (FAI). RESULTS: The 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. SRDs(group) ranged between 0.05 and 0.09. Convergent and discriminant validity were supported by the correlations between the MSPP(frequency) and the FAI. CONCLUSIONS: The 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.

Characteristics of social participation as defined by older adults with a chronic physical illness.

PURPOSE: To conceptualize social participation in line with the experiences of older adults with a chronic physical illness. METHOD: Qualitative study consisting of ten individual interviews and two focus group interviews with older adults with Chronic Obstructive Pulmonary Disease or Diabetes Mellitus Type 2. RESULTS: Four domains of social participation were identified on the basis of the individual interviews: (i) social contacts and social activities, (ii) work and informal support, (iii) cultural activities and public events, and (iv) politics and media. Three characteristics of social participation could be distilled from discussions in the focus groups: social contact, contributing resources to society and receiving resources from society. In addition, only positive experiences were considered to be social participation. CONCLUSIONS: In our study, older adults with a chronic physical illness perceived social participation as a positive experience having one or more of the following three characteristics: social contact, contributing resources to society or receiving resources from society. This is fairly consistent with the literature about social participation, although previous researchers did not mention a positive experience condition and disagreed whether receiving resources could be considered as 'genuine' social participation.

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.

How do people with COPD or diabetes type 2 experience autonomy? An exploratory study.

PURPOSE: To develop an empirically grounded conceptualization of personal autonomy in the context of chronic physical illness and to investigate the impact of two chronic illnesses on autonomy. METHOD: Grounded theory study consisting of 13 in-depth interviews with older adults with Chronic Obstructive Pulmonary Disease (COPD) or diabetes mellitus type 2 (diabetes). RESULTS: The results indicate that autonomy involves taking account of current circumstances as the frame of reference in which people can arrange their lives. Chronic illness disturbed autonomy by limiting opportunities and by prompting a reappraisal of the value that people placed on different activities or aspects of life. The participants responded to this disturbance differently, in ways that did not always restore autonomy. Limited opportunities occurred more often with COPD, while reappraisal occurred more often with diabetes. CONCLUSIONS: Personal autonomy in the context of chronic physical illness might be conceptualized as correspondence between the way people's lives are actually arranged and the way people want their lives to be arranged, considering the circumstances. Health professionals could stimulate their clients to prevent and overcome impasses in the realisation of autonomy, while broad self-management interventions might improve people's skills for coping with the impact of chronic illness on autonomy.

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.

Development of the client-centred care questionnaire.

AIM: This paper reports the development and testing of the Client-Centred Care Questionnaire, aimed at evaluating the client-centredness of professional home nursing care from a client perspective. BACKGROUND: Client-centred care has become an important theme in health care. To evaluate the client-centredness of care and services from a client's perspective, there is a need for measurement instruments. METHOD: The questionnaire was developed on the basis of a qualitative study into client perspectives on home nursing care. Items were formulated that closely followed the aspects clients mentioned as central to client-centred home care. A pilot study was conducted with a sample of 107 clients in three home care organizations in 2003 and 2004. These clients had chronic diseases and were expected to receive care for at least another 6 months. The questionnaire comprises 15 items. FINDINGS: Principal components analysis and internal consistency analysis show strong internal consistency of the items. All items had strong factor loadings on one dimension, and Cronbach's alpha was 0.94. Clients tended to be most critical about their say in the practical arrangements and organization of care: which person came, how often and when? Clients of the three organizations differed in their perceptions of client-centredness, which may indicate that the questionnaire is capable of differentiating between respondents. CONCLUSION: The results of this pilot study are promising. The validity of the questionnaire needs further testing.

What is a good death? Terminally ill patients dealing with normative expectations around death and dying.

OBJECTIVE: Developing good care for dying people is important nowadays. Normative expectations about what could be considered as a good death are inextricably bound up with this issue. This article aims to offer an insight in the way terminally ill patients talk about death and dying and how they refer to current western normative expectations about a 'good' death. METHOD: Thirteen patients with a life expectancy of less than 3 months living at home were interviewed about how they experienced the last phase of their lives. The analysis focused on the way patients tell their personal stories by using normative expectations that are part of a broader cultural western framework. RESULTS: Five categories of normative expectations were discriminated in the stories of patients: awareness and acceptance, open communication, living one's life till the end, taking care of one's final responsibilities and dealing adequately with emotions. CONCLUSIONS: The results of this study show that in the search of a good death people show a clear diversity in their way of referring to as well as in dealing with normative expectations that are part of the current cultural paradigm. PRACTICE IMPLICATIONS: Professional caregivers should be responsive to how a patient deals with and relates to normative expectations about a good death and should support patients in their individual process of dying an 'appropriate death'.

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 client's 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.

Recognition of client values as a basis for tailored care: the view of Dutch expert patients and family caregivers.

In the Netherlands confusion is signalled about the introduction of new care concepts like demand-oriented care. The aim of this article is to explore the phenomenon 'interaction aimed at care tailored to the client demand' as seen by expert clients: patients and their family caregivers. Focus interviews were held with expert patients and expert family caregivers of the 'Dutch Council of the Chronically ill and the Disabled'. Grounded theory methodology was used to analyse the results. Recognition by the professional of client values underlying their demand (uniqueness, comprehensiveness, continuity of life, fairness and autonomy) and underlying the care-relationship (equality, partnership and interdependence) emerged as central element within the interaction. Feelings of recognition with the client seem to reinforce autonomy, self-esteem and participation. Recognition was optimally felt in a dialogue. Four professional competencies could be identified related to recognition: attentiveness (ongoing actions to know and understand the patient); responsiveness (active, committed and responsible care guided by respect of patient identity); being a critical partner in care (giving and grounding professional opinion and discuss boundaries); being a developer of client competencies (facilitating and developing client participation within care). The findings offer possibilities to operationalize care concepts aimed at tailored care. Further research aimed at refining and testing the hypothesis developed is recommended.

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.

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.

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.