Involuntary care - capturing the experience of people with dementia in nursing homes. A concept mapping study.

OBJECTIVE: To avoid restraints and involuntary care caregivers should be aware if and how a patient resists care. This article focuses on behavioural expressions of people with severe dementia in nursing homes that are interpreted by their formal and informal caregivers as possible expressions of their experience of involuntary care. METHOD: Concept mapping was used, following five steps: (1) brainstorming, (2) rating, (3) sorting, (4) statistical analysis & visual representation and (5) interpretation. Specialists (n = 12), nurses (n = 23) and relatives (n = 13) participated in separate groups . RESULTS: The views generated are grouped into clusters of behaviour, presented in graphic charts for each of the respondent groups. The large variety of behavioural symptoms includes, in all groups, not only the more obvious and direct behavioural expressions like aggression, resistance and agitation, but also more subtle behaviour such as sorrow, general discomfort or discontent. CONCLUSION(S): In the interpretation of behavioural symptoms of people with severe dementia it is important to take into account the possibility of that person experiencing involuntary care. Increased awareness and understanding of the meaning and consequences of the behavioural expressions is an important step in improving dementia care by avoiding restraints and involuntary care to its maximum.

Restraint interventions in people with moderate to profound intellectual disabilities: Perspectives of support staff and family members.

BACKGROUND: Due to incompatibilities in communication, it is key that family members and support staff can take the perspective of people with moderate to profound intellectual disabilities (ID) whilst putting aside their own perspectives. METHOD: Ten vignettes describing types of restraint interventions (RIs) were presented to 20 unique pairs of support staff and family members related to individuals with moderate to profound ID. RESULTS: In taking their own perspective, more than half of the support staff and family members perceived all RIs as involuntary and severe. In contrast, when asked to put themselves in the position of the client/family member, only three RIs were considered involuntary by a majority of support staff and family members. CONCLUSIONS: These results indicate that support staff and family members can take into account the perspective of people with moderate to profound ID in the evaluation and consideration of involuntary care.

Obstacles and Enablers on the Way towards Integrated Physical Activity Policies for Childhood Obesity Prevention: An Exploration of Local Policy Officials' Views.

Background. Limited physical activity (PA) is a risk factor for childhood obesity. In Netherlands, as in many other countries worldwide, local policy officials bear responsibility for integrated PA policies, involving both health and nonhealth domains. In practice, its development seems hampered. We explore which obstacles local policy officials perceive in their effort. Methods. Fifteen semistructured interviews were held with policy officials from health and nonhealth policy domains, working at strategic, tactic, and operational level, in three relatively large municipalities. Questions focused on exploring perceived barriers for integrated PA policies. The interviews were deductively coded by applying the Behavior Change Ball framework. Findings. Childhood obesity prevention appeared on the governmental agenda and all officials understood the multicausal nature. However, operational officials had not yet developed a tradition to develop integrated PA policies due to insufficient boundary-spanning skills and structural and cultural differences between the domains. Tactical level officials did not sufficiently support intersectoral collaboration and strategic level officials mainly focused on public-private partnerships. Conclusion. Developing integrated PA policies is a bottom-up innovation process that needs to be supported by governmental leaders through better guiding organizational processes leading to such policies. Operational level officials can assist in this by making progress in intersectoral collaboration visible.

Health-related quality of life in end-stage COPD and lung cancer patients.

Historically, palliative care has been developed for cancer patients and is not yet generally available for patients suffering from chronic life-limiting illnesses, such as chronic obstructive pulmonary disease (COPD). To examine whether COPD patients experience similar or worse disease burden in comparison with non-small cell lung cancer (NSCLC) patients, we compared the health-related quality of life (HRQOL) scores of severe COPD patients with those of advanced NSCLC patients. We also formally updated previous evidence in this area provided by a landmark study published by Gore et al. in 2000. In updating this previous evidence, we addressed the methodological limitations of this study and a number of confounding variables. Eighty-two GOLD IV COPD patients and 19 Stage IIIb or IV NSCLC patients completed generic and disease-specific HRQOL questionnaires. We used an individual patient data meta-analysis to integrate the new and existing evidence (total n=201). Finally, to enhance between-group comparability, we performed a sensitivity analysis using a subgroup of patients with a similar degree of "terminality," namely those who had died within one year after study entry. Considerable differences in HRQOL were found for physical functioning, social functioning, mental health, general health perceptions, dyspnea, activities of daily living, and depression. All differences favored the NSCLC patients. The sensitivity analysis, using only terminal NSCLC and COPD patients, confirmed these findings. In conclusion, end-stage COPD patients experience poor HRQOL comparable to or worse than that of advanced NSCLC patients. We discuss these findings in the light of the notion that these COPD patients may have a similar need for palliative care.

The silence of patients with end-stage COPD: a qualitative study.

BACKGROUND: Patients with end-stage chronic obstructive pulmonary disease (COPD) experience poor quality of life and considerable problems in daily life. However, as they often do not actively express a wish for help, they do not get the help they need. AIM: To gain insight into why patients with end-stage COPD tend not to express a wish for help. DESIGN OF STUDY: Prospective qualitative study with semi-structured interviews. SETTING: Outpatient clinics of four hospitals and one centre specialising in asthma and COPD in the Netherlands. METHOD: Sixteen semi-structured interviews were conducted with 11 patients with end-stage COPD. RESULTS: To express a wish for help, patients should regard their limitations as abnormal and should realise that there are possibilities to improve their situation. However, this was not the case with the patients interviewed. They appeared to consider themselves ill at a time of acute exacerbation of their illness, but regarded their everyday life as normal. In addition, patients lived with the assumption that, as their lungs were damaged beyond repair, they could not get help. CONCLUSION: Patients with end-stage COPD do not actively express a wish for help because they do not consider their limitations to be abnormal and because they do not realise that there are possibilities to improve their situation. These results suggest that care in this stage of the disease should focus on improving daily life instead of just aiming to improve the functioning of the lungs. Professionals in health care should actively explore what kind of practical help these patients might welcome in keeping up their daily activities. Future research should focus on studying whether such an approach applies to the needs of patients with end-stage COPD.

Health care needs in end-stage COPD: a structured literature review.

OBJECTIVE: To give an overview of relevant literature regarding health care needs in end-stage COPD and to identify specific areas where knowledge about needs is still lacking. METHODS: We conducted a structured literature review. We used Bradshaw's classification system. RESULTS: Seventy-seven publications were found. Ten publications were included in the review. The results reported cover a wide range of subjects, all regarded as health care needs. Most reported on 'felt need', i.e. needs that are mentioned by patients themselves. Results on 'normative need' (based on expert judgement) were lacking. CONCLUSION: The literature about the health care needs of patients in the end-stage of COPD is sparse, and there is no commonly accepted definition of health care needs. Looking at the increasing demand for end of life care for COPD patients, there is a clear need for further research on this subject. PRACTICE IMPLICATIONS: We especially need to focus on agreement between experts and professionals so that guidelines can be developed. To attend to the unfulfilled needs of end-stage COPD patients, the delivery of health care should be re-examined carefully.

Quality of life versus prolongation of life in patients treated with chemotherapy in advanced colorectal cancer: A review of randomized controlled clinical trials.

Oncologists disagree if chemotherapy in advanced cancer can improve quality of life (QoL), to prolong duration of life, or both. The objective of this study was to clarify the main treatment intention of palliative chemotherapy (PCT): the prolongation of life (PoL); or QoL. Randomized controlled clinical trials of PCT in advanced colorectal cancer that included HRQoL assessment were selected from PubMed and reviewed. Authors' conclusions were based on both PoL- and QoL-related outcomes. However, if PoL and QoL outcomes of the experimental arm were opposite, which was the case in 13 out of 28 trials, the authors generally based their conclusion on PoL outcomes. Authors' conclusions focused mainly on PoL-related outcomes, while QoL-related outcomes were of overriding importance in only 1/28 case. QoL can therefore not be considered as the main outcome of PCT. The review shows that in the context of chemotherapy in advanced colorectal cancer, 'palliative' refers to a life-prolonging intention, whereas within palliative care it refers to an improvement in QoL.

The cost of illness of pressure ulcers in The Netherlands.

OBJECTIVE: To conduct a cost-of-illness study of pressure ulcers in the Netherlands for different care settings, including home care, nursing homes, general hospitals, and university hospitals. DESIGN: A cost-of-illness study was conducted based on prevalence figures and expert opinion. A differential cost study approach was used, distinguishing among the 4 stages of pressure ulcer severity and the different care settings. To obtain expert opinion, structured interviews were conducted with pressure ulcer experts who were chosen randomly from the membership of the Dutch Society of Pressure Ulcer Experts. Information was gathered on volume of care parameters for each pressure ulcer stage, including personnel, extra days of care, and use of special beds and medical materials. Experts were asked to estimate the percentage of patients for which each care parameter was considered relevant; low and high estimates of each figure were given to determine the range of the calculations. Cost estimates were obtained from Dutch guidelines for cost calculations in health care, then converted to US dollars. SETTING: Home care, nursing homes, general hospitals, and university hospitals in the Netherlands. PARTICIPANTS: Experts on pressure ulcer management working in the different care settings. MAIN OUTCOME MEASURE: Cost-of-illness of pressure ulcers, converted to US dollars. MAIN RESULTS: The cost-of-illness of pressure ulcers ranged from a low estimate of $362 million to a high estimate of $2.8 billion. The most conservative estimate is approximately 1% of the total Dutch health care budget. CONCLUSION: The cost-of-illness of pressure ulcers in the Netherlands is considerable.