Dataset Information

A dignified last phase of life for patients with a migration background: A qualitative study.

ABSTRACT:

Background

Preserving personal dignity is an important part of palliative care. Generally, autonomy, independency and not being a burden to others are emphasised for preserving dignity. Dignity has not been studied yet from the perspective of the growing group of patients with a migration background living in Western countries.

Aim

To gain insight into (1) what patients - and their relatives - with a Turkish, Moroccan or Surinamese background, living in the Netherlands, in their last phase of life find important aspects of dignity, and (2) how care professionals can preserve and strengthen the dignity of these patients.

Design

Qualitative thematic analysis of semi-structured interviews.

Participants

A total of 23 patients and 21 relatives with a Turkish, Moroccan or Surinamese background were interviewed.

Results

For respondents dignity encompassed surrender to God's or Allah's will and meaningful relationships with others, rather than preserving autonomy. Surrender to God or Allah meant accepting the illness, the situation and performing religious practice. A meaningful relationship meant being assisted or cared for by family members and maintaining a social role. Professionals could preserve dignity by showing respect and attention; guaranteeing physical integrity, hygiene and self-direction; and indirect communication about diagnoses and prognoses.

Conclusions

Religion and appropriate involvement of family members are important aspects of dignity in the last phase of life, in addition to autonomy and independency. Care professionals need to take these factors into account in order to provide person-centred care.

SUBMITTER: de Voogd X

PROVIDER: S-EPMC7543003 | biostudies-literature | 2020 Dec

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

A dignified last phase of life for patients with a migration background: A qualitative study.

de Voogd X X Oosterveld-Vlug M G MG Torensma M M Onwuteaka-Philipsen B D BD Willems D L DL Suurmond J L JL

Palliative medicine 20200911 10

<h4>Background</h4>Preserving personal dignity is an important part of palliative care. Generally, autonomy, independency and not being a burden to others are emphasised for preserving dignity. Dignity has not been studied yet from the perspective of the growing group of patients with a migration background living in Western countries.<h4>Aim</h4>To gain insight into (1) what patients - and their relatives - with a Turkish, Moroccan or Surinamese background, living in the Netherlands, in their l ...[more]

PMID: 32912088

Similar Datasets

Project description:BackgroundA key aim of palliative care is to improve the quality of life of patients and their families. To help ensure quality of life for the families of patients with migrant backgrounds, this study sought insights into the dignity of informal caregivers in migrant communities. This could improve understanding of family-centered care for migrant patients.MethodsTwenty semi-structured interviews with informal caregivers of Turkish, Moroccan, or Surinamese background living in the Netherlands were analyzed thematically.ResultsThe dignity of the patient and that of their informal caregivers were found to be strongly interrelated. Most important for the dignity of caregivers was ensuring good care for their patients and preserving the patients' dignity. Ensuring good care involved advocating for good and dignified care and for satisfaction of a patient's wishes. For many informal caregivers, it also included delivering care to the patient by themselves or together with other family members, despite having to give up part of their own lives. Providing care themselves was part of maintaining a good relationship with the patient; the care was to cater to the patient's preferences and help preserve the patient's dignity, and it could be accompanied by valuable aspects such as times for good conversations. Positive interaction between an informal caregiver and a patient positively influenced the informal caregiver's dignity. Informal caregiver and patient dignity were often compromised simultaneously; when informal caregivers felt healthcare professionals were undermining a patient's dignity, their own dignity suffered. According to informal caregivers, healthcare professionals can help them preserve dignity by taking seriously their advice about the patient, keeping them informed about the prognosis of the disease and of the patient, and dealing respectfully with differences in values at the end of life.ConclusionThe dignity of migrant patients' informal caregivers in the last phase of a patient's life is closely entwined with ensuring good care and dignity for the patient. Healthcare professionals can strengthen the dignity of informal caregivers by supporting their caregiving role.

Project description:BackgroundLow back pain (LBP) is one of the major concerns in health care. In Switzerland, musculoskeletal problems represent the third largest illness group with 9.4 million consultations per year. The return to work rate is increased by an active treatment program and saves societal costs. However, results after rehabilitation are generally poorer in patients with a Southeast European cultural background than in other patients. This qualitative research about the rehabilitation of patients with LBP and a Southeast European cultural background, therefore, explores possible barriers to successful rehabilitation.MethodsWe used a triangulation of methods combining three qualitative methods of data collection: 13 semi-structured in-depth interviews with patients who have a Southeast European cultural background and live in Switzerland, five semi-structured in-depth interviews and two focus groups with health professionals, and a literature review. Between June and December 2008, we recruited participants at a Rehabilitation Centre in the German-speaking part of Switzerland.ResultsTo cope with pain, patients prefer passive strategies, which are not in line with recommended coping strategies. Moreover, the families of patients tend to support passive behaviour and reduce the autonomy of patients. Health professionals and researchers propagate active strategies including activity in the presence of pain, yet patients do not consider psychological factors contributing to LBP. The views of physicians and health professionals are in line with research evidence demonstrating the importance of psychosocial factors for LBP. Treatment goals focusing on increasing daily activities and return to work are not well understood by patients partly due to communication problems, which is something that patients and health professionals are aware of. Additional barriers to returning to work are caused by poor job satisfaction and other work-related factors.ConclusionsLBP rehabilitation can be improved by addressing the following points. Early management of LBP should be activity-centred instead of pain-centred. It is mandatory to implement return to work management early, including return to adapted work, to improve rehabilitation for patients. Rehabilitation has to start when patients have been off work for three months. Using interpreters more frequently would improve communication between health professionals and patients, and reduce misunderstandings about treatment procedures. Special emphasis must be put on the process of goal-formulation by spending more time with patients in order to identify barriers to goal attainment. Information on the return to work process should also include the financial aspects of unemployment and disability.

Project description:BackgroundPhysician home visits are associated with better health outcomes, yet most patients near the end of life never receive such a visit. Our objectives were to describe the receipt of physician home visits during the last year of life after a referral to home care - an indication that the patient can no longer live independently - and to measure associations between patient characteristics and receipt of a home visit.MethodsWe conducted a retrospective cohort study using linked population-based health administrative databases housed at ICES. We identified adult (aged ≥ 18 yr) decedents in Ontario who died between Mar. 31, 2013, and Mar. 31, 2018, who were receiving primary care and were referred to publicly funded home care services. We described the provision of physician home visits, office visits and telephone management. We used multinomial logistic regression to calculate the odds of receiving home visits from a rostered primary care physician, controlling for referral during the last year of life, age, sex, income quintile, rurality, recent immigrant status, referral by rostered physician, referral during hospital stay, number of chronic conditions and disease trajectory based on the cause of death.ResultsOf the 58 753 decedents referred in their last year of life, 3125 (5.3%) received a home visit from their family physician. Patient characteristics associated with higher odds of receiving home visits compared to office-based or telephone-based care were being female (adjusted odds ratio [OR] 1.28, 95% confidence interval [CI] 1.21-1.35), being 85 years of age or older (adjusted OR 2.42, 95% CI 1.80-3.26) and living in a rural area (adjusted OR 1.09, 95% CI 1.00-1.18). Increased odds were associated with home care referrals by the patient's primary care physician (adjusted OR 1.49, 95% CI 1.39-1.58) and referrals occurring during a hospital stay (adjusted OR 1.20, 95% CI 1.13-1.28).InterpretationA small proportion of patients near the end of life received home-based physician care, and patient characteristics did not explain the low visit rates. Future work on system- and provider-level factors may be critical to improve access to home-based end-of-life primary care.

Project description:Rationale & objectiveAlmost all patients who receive dialysis experience polypharmacy, but little is known about their experiences with medication or perceptions toward it. In this qualitative study, we aimed to gain insight into dialysis patients' experiences with polypharmacy, the ways they integrate their medication into their daily lives, and the ways it affects their quality of life.Study designQualitative study using semistructured interviews.Setting & participantsPatients who received dialysis from 2 Dutch university hospitals.Analytical approachInterviews were transcribed verbatim and analyzed independently by 2 researchers through thematic content analysis.ResultsOverall, 28 individuals were interviewed (29% women, mean age 63 ± 16 years, median dialysis vintage 25.5 [interquartile range, 15-48] months, mean daily number of medications 10 ± 3). Important themes were as follows: (1) their own definition of what constitutes "medication," (2) their perception of medication, (3) medication routines and their impact on daily (quality of) life, and (4) interactions with health care professionals and others regarding medication. Participants generally perceived medication as burdensome but less so than dialysis. Medication was accepted as an essential precondition for their health, although participants did not always notice these health benefits directly. Medication routines and other coping mechanisms helped participants reduce the perceived negative effects of medication. In fact, medication increased freedom for some participants. Participants generally had constructive relationships with their physicians when discussing their medication.LimitationsResults are context dependent and might therefore not apply directly to other contexts.ConclusionsPolypharmacy negatively affected dialysis patients' quality of life, but these effects were overshadowed by the burden of dialysis. The patients' realization that medication is important to their health and effective coping strategies mitigated the negative impact of polypharmacy on their quality of life. Physicians and patients should work together continuously to evaluate the impact of treatments on health and other aspects of patients' daily lives.Plain-language summaryPeople receiving dialysis treatment are prescribed a large number of medications (polypharmacy). Polypharmacy is associated with a number of issues, including a lower health-related quality of life. In this study we interviewed patients who received dialysis treatment to understand how they experience polypharmacy in the context of their daily lives. Participants generally perceived medication as burdensome but less so than dialysis and accepted medication as an essential precondition for their health. Medication routines and other coping mechanisms helped participants mitigate the perceived negative effects of medication. In fact, medication led to increased freedom for some participants. Participants had generally constructive relationships with their physicians when discussing their medication but felt that physicians sometimes do not understand them.

Dataset Information

A dignified last phase of life for patients with a migration background: A qualitative study.

Background

Aim

Design

Participants

Results

Conclusions

Publications

A dignified last phase of life for patients with a migration background: A qualitative study.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets