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Parkinson's disease (PD) is a progressive neurodegenerative condition often resulting in significant disability and impacting on one's ability to participate in an occupation. The present study aimed to explore how people with advanced Parkinson's disease experience the phenomenon of occupation in their daily lives in order to inform the practice of occupational therapy in palliative care.
Method:
Using a phenomenological approach, in-depth interviews were undertaken with a purposive sample of 10 people in the advanced stages of Parkinson's disease. These interviews were audiotaped, transcribed verbatim, and subsequently analyzed using a thematic content analysis approach. The study received approval from the relevant university ethics committee, as well as the research network of Parkinson's UK.
Results:
The experience of occupation emerged as being physical, psychological, social, and spiritual with related subthemes. Within each of these themes, participants described their experience of occupation that they valued and that were important to their daily lives. They also identified the strategies they employed to continue participating in certain occupations and described others they were no longer able to engage in and the impact of that loss.
Significance of Results:
Participants' experiences crossed the domains of palliative care and suggest that adopting a palliative care approach would enhance an enhanced quality of life, experienced in terms of meaningful and valuable occupation. Disruption to participation in occupation caused them distress and frustration, suggesting that access to occupation-focused therapy would significantly improve quality of life for people with PD. As there is a strong link between the ethos of occupational therapy and palliative care, it is proposed that there is a valuable role for occupational therapy intervention to play within palliative care.
Each year, more than 11,000 adolescents and young adults (AYAs), aged 15–34, die from cancer and other life-threatening conditions. In order to facilitate the transition from curative to end-of-life (EoL) care, it is recommended that EoL discussions be routine, begin close to the time of diagnosis, and continue throughout the illness trajectory. However, due largely to discomfort with the topic of EoL and how to approach the conversation, healthcare providers have largely avoided these discussions.
Method:
We conducted a two-phase study through the National Cancer Institute with AYAs living with cancer or pediatric HIV to assess AYA interest in EoL planning and to determine in which aspects of EoL planning AYAs wanted to participate. These results provided insight regarding what EoL concepts were important to AYAs, as well as preferences in terms of content, design, format, and style. The findings from this research led to the development of an age-appropriate advance care planning guide, Voicing My CHOiCES™.
Results:
Voicing My CHOiCES™: An Advanced Care Planning Guide for AYA became available in November 2012. This manuscript provides guidelines on how to introduce and utilize an advance care planning guide for AYAs and discusses potential barriers.
Significance of Results:
Successful use of Voicing My CHOiCES™ will depend on the comfort and skills of the healthcare provider. The present paper is intended to introduce the guide to providers who may utilize it as a resource in their practice, including physicians, nurses, social workers, chaplains, psychiatrists, and psychologists. We suggest guidelines on how to: incorporate EoL planning into the practice setting, identify timepoints at which a patient's goals of care are discussed, and address how to empower the patient and incorporate the family in EoL planning. Recommendations for introducing Voicing My CHOiCES™ and on how to work through each section alongside the patient are provided.
The purpose of this study was to determine the effect of acupressure applied to the pericardium 6 (P6 or neiguan) acupuncture point on chemotherapy-induced nausea, vomiting, and anxiety in patients with breast cancer.
Method:
The study was conducted using a quasi-experimental model with a control group. It included a total of 64 patients with stages 1–3 breast cancer who received cycle two and more advanced chemotherapy in an ambulatory chemotherapy unit. There were 32 patients in the experimental group and 32 patients in the control group. Acupressure was applied to the P6 acupuncture point of patients in the experimental group with the help of a wristband. A Patient Information Form, the Beck Anxiety Inventory, and the Index of Nausea, Vomiting and Retching were employed to collect the data.
Results:
It was determined that the mean nausea, vomiting, and retching scores, the total (experience, occurrence, and distress) scores, and the mean anxiety scores for patients to whom acupressure was applied at the P6 acupuncture point were statistically significantly lower compared with the scores of patients in the control group.
Significance of Results:
The efficacy of applying acupressure was demonstrated. We determined that applying acupressure at the P6 point is effective in decreasing chemotherapy-induced nausea, vomiting, and anxiety in patients with breast cancer. Further research with more subjects is needed.
Volunteers trained in palliative care are increasingly present in acute care units in general hospitals. Nevertheless, there still are few available data on this topic, especially concerning the integration of volunteers outside the palliative structures. Our present study aimed to describe the experience of volunteers trained in palliative care in the context of a primary care hospital. In particular, the difficulties and the benefits of this specific position were evaluated according to volunteers' own perceptions and words.
Method:
We employed a qualitative method. Various aspects of the volunteer's role were explored by means of semistructured questions, addressing their activity, their motivations, and their feelings. Participants were volunteers (n = 19) trained in palliative care and working at a university hospital. After giving written consent, they completed the semistructured questionnaire at home. Content analysis was used to identify the main categories of answers and the principal themes reported by the volunteers.
Results:
The main difficulties were related to uncertainty of the context. As every situation is different, volunteers could not define their role once and for all. However, they derived great satisfaction from their activity. A supporting frame and a good balance between constraints and autonomy were facilitating factors. Besides, the complexity related to the context contributed to make the position valuable and challenging.
Significance of results:
Integrating a voluntary service in a primary care hospital is partly based on active participation of the volunteers in developing their position in a more adequate way. In return, this relative autonomy implies a rigorous and supportive attitude from the institution.
Our aim was to describe the developmental process of a training program for nurses to communicate existential issues with severely ill patients.
Method:
The Medical Research Council (MRC) framework for the development and evaluation of complex interventions was used to develop a training program for nurses to communicate about existential issues with their patients. The steps in the framework were employed to describe the development of the training intervention, and the development, feasibility and piloting, evaluation, and implementation phases. The development and feasibility phases are described in the Methods section. The evaluation and implementation phases are described in the Results section.
Results:
In the evaluation phase, the effectiveness of the intervention was shown as nurses' confidence in communication increased after training. The understanding of the change process was considered to be that the nurses could describe their way of communicating in terms of prerequisites, process, and content. Some efforts have been made to implement the training intervention, but these require further elaboration.
Significance of results:
Existential and spiritual issues are very important to severely ill patients, and healthcare professionals need to be attentive to such questions. It is important that professionals be properly prepared when patients need this communication. An evidence-based training intervention could provide such preparation. Healthcare staff were able to identify situations where existential issues were apparent, and they reported that their confidence in communication about existential issues increased after attending a short-term training program that included reflection. In order to design a program that should be permanently implemented, more knowledge is needed of patients' perceptions of the quality of the healthcare staff's existential support.
This project evaluated the psychometric properties of a translated version of the Head and Neck Cancer Inventory (HNCI) for use with Japanese patients. The HNCI is a measure for assessing the quality of life (QoL) of head and neck cancer patients and survivors. The present study was aimed at investigating the reliability and validity of this translated instrument.
Method:
Some 165 patients with head and neck cancer (HNC) were enrolled at the Tokyo Medical and Dental University Hospital. The instrument's internal consistency and test–retest reliability were evaluated. Criterion-related validity was assessed by correlations between the HNCI and the Functional Assessment of Cancer Therapy–Head and Neck (FACT–H&N) scales.
Results:
Some 29 of the 30 items in the original version were selected to comprise the Japanese version of the HNCI (Japanese HNCI). Investigation of criterion-related validity using the FACT–H&N demonstrated significant correlations (Spearman's ρ = 0.47–0.63). The value of Cronbach's α for each subscale ranged from 0.84 to 0.87. Test–retest reliability showed an intraclass correlation coefficient (ICC) of 0.62–0.79.
Significance of Results:
The reliability and validity of the Japanese HNCI were evaluated. Although its classification is different from the original U.S. version, the Japanese HNCI is a self-administered questionnaire that can assess quality of life (QoL) in patients with head and neck cancer.
Recognizing depressive symptoms in patients with amyotrophic lateral sclerosis (ALS) remains problematic given the potential overlap with the normal psychological responses to a terminal illness. Understanding mental health and disease-related risk factors for depression is key to identifying psychological morbidity. The present study aimed to determine the prevalence of depressive symptoms in ALS and to explore mental health and disease-related risk factors for depression.
Method:
Structured medical and psychiatric history questionnaires and a validated depression scale (Depression, Anxiety, Stress Scale–21) were completed by 27 ALS patients (60% female; 59% limb onset; age 65.11 ± SE 2.21) prior to their initial review at a multidisciplinary clinic. Physical function was assessed with the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS–R).
Results:
At the time of initial assessment, 44% of patients had a previous psychiatric history, although the majority (62%) reported no symptoms of depression. The mean ALSFRS–R score was 37.78 ± SE 1.22, with an average diagnostic interval of 16.04 ± SE 2.39 months. Logistic regression analysis revealed that the length of the diagnostic interval alone predicted depressive symptoms (χ2(3, n = 26) = 9.21, Odds Ratio (OR) = 1.12, p < 0.05.
Significance of Results:
The illness experiences of ALS patients rather than established mental health risk factors influence the manifestation of depressive symptoms in the early stages of the disease, with clinical implications for the assessment and treatment of psychological morbidity. Patients with lengthy diagnostic intervals may be prime targets for psychological assessment and intervention, especially in the absence of ALS-specific tests and biomarkers.
This paper reports the findings of an interview-based study undertaken to investigate the introduction of end-of-life (EoL) care pathways in three acute trusts, as part of a larger project examining service redesign. The aim was to examine the barriers to and facilitators of change.
Method:
Twenty-one in-depth qualitative interviews were conducted with staff working in three National Health Service (NHS) acute hospital trusts. These staff members were involved in end-of-life care, and their accounts were analyzed to identify the key issues when introducing service changes in these settings.
Results:
Thematic analysis revealed five major themes—two of which, leadership and facilitation, and education and training, indicate what needs to be in place if end-of-life care pathways are to be adopted by staff. However, the remaining three themes of difficult conversations, diagnosing dying, and communication across boundaries highlight particular areas of practice and organization that need to be addressed before end-of-life care in hospitals can be improved.
Significance of results:
Organization of end-of-life care in acute hospitals is challenging, and care pathways provide a degree of guidance as to how services can be delivered. However, even when there is effective leadership at all levels of an organization and an extensive program of education for all staff support the use of care pathways, significant barriers to their introduction remain. These include staff anxieties concerning diagnosing dying and discussing dying and end-of-life care planning with patients and their families. It is hoped these findings can inform the development of the proposed new care plans which are set to replace end of life care pathways in England.
This systematic review aimed to examine end-of-life (EoL) care research undertaken in an Eastern cultural context—Hong Kong—with the hope of better informing EoL care professionals and policy makers and providing lessons for other countries or areas that share similar EoL care challenges.
Method:
Eight databases were searched from their respective inception through to August of 2014. All of the resulting studies conducted in Hong Kong and relevant to EoL care or palliative care were examined. The included studies were assessed with respect to study design, care settings, participants, research themes, and major findings.
Results:
Some 107 publications published between 1991 and 2014 were identified. These studies were undertaken at a range of places by different professionals. Of the total, 44 were led by physicians, 36 by nurses, 17 by social workers, and 10 by other professionals. Participants included both inpatients and outpatients with different illnesses, nursing home residents, older community-dwelling adults, deceased individuals, care staff, and informal caregivers. A total of 13 research themes were identified: (1) attitudes to or perceptions of death and dying; (2) utilization of healthcare services, (3) physical symptoms or medical problems; (4) death anxiety or mental health issues; (5) quality of life; (6) advance directives or advance care planning; (7) supportive care needs, (8) decision making; (9) spirituality; (10) cost-effectiveness or utility studies; (11) care professionals' education and training; (12) informal caregivers' perceptions and experience; and (13) scale development or validation.
Significance of results:
While there has been a wide and diverse range of research activities in Hong Kong, EoL care services at primary care settings should be strengthened. Some priority areas for further research are recommended.
We aimed to examine telemedicine as a form of home and additional support for traditional outpatient care as a way to remotely monitor and manage the symptoms of patients with advanced cancer.
Method:
In total, 12 patients were monitored through monthly consultations with a multidisciplinary healthcare team and weekly web conferences. To evaluate and treat pain and other symptoms, the Edmonton Symptom Assessment System (ESAS) was applied during all remote or in-person interviews.
Results:
During monitoring, the team contacted the patients on 305 occasions: there were 89 consultations at the hospital, 19 in-person assistances to the family (without the patient), 77 web conferences, 38 telephone calls, 80 emails, and 2 home visits. The mean monitoring time until death was 195 ± 175.1 days. Eight patients who completed the ESAS in all interviews had lower mean distress symptom scores according to web conferences than in person.
Significance of results:
Telemedicine allowed greater access to the healthcare system, reduced the need to employ emergency services, improved assessment/control of symptoms, and provided greater orientation and confidence in the care given by family members through early and proactive interventions. Web conferencing proved to be a good adjuvant to home monitoring of symptoms, complementing in-person assistance.
Psychosocial interventions directed to couples where one has advanced cancer can reduce distress, enhance communication, and provide an opportunity for relational growth. The present study aimed to develop an intervention to facilitate communication about living with advanced cancer using the Patient Dignity Inventory (PDI) as the focus of a clinical interview with couples toward the end of life.
Method:
Couples were recruited from oncology and palliative care services at a Sydney hospital. After the PDI was developed and manualized as an intervention for couples, the PDI–Couple Interview (PDI–CI) was delivered by a clinical psychologist and comprised the following: (1) the patient completed the PDI; (2) the patient's identified partner completed the PDI about how they thought the patient was feeling; and (3) the clinician reviewed the results with the couple, summarizing areas of concurrence and discordance and facilitating discussion.
Results:
Some 34 couples were referred, of which 12 consented, 9 of whom completed the clinical interview. Reported benefits included enabling couples to express their concerns together, identifying differences in understanding, and giving “permission to speak” with each other. The focus of the interview around the PDI provided a structure that was particularly acceptable for men. Most couples confirmed that they were “on the same page,” and where differences were identified, it provided a forum for discussion and a mutual understanding of the challenges in managing advanced cancer within a supportive context.
Significance of Results:
Participant couples' experiences of the PDI–CI provide valuable insight into the benefits of this intervention. This preliminary study indicates that the intervention is a relatively simple means of enhancing closer communication and connection between couples where one has advanced cancer and may be an important adjunct in helping prepare couples for the challenges inherent toward the end of life. Further investigation of feasibility with a larger sample is recommended.
Much of the cancer rehabilitation research that has been conducted has consisted of relatively early recovery-of-function rehabilitation, and little attention has been paid to the psychosocial aspects of palliative rehabilitation. The aim of the present preliminary study was to examine the “narratives” of elderly cancer patients that emerged as a result of a life review performed in association with collage activity and to assess the effectiveness of this intervention.
Method:
We conducted a collage activity based on a life review in two sessions. Some 11 cancer patients who were 65 years of age or older and receiving palliative care participated. Evaluations using the Functional Assessment of Chronic Illness Therapy–Spiritual (FACIT–Sp) Scale, the Hospital Anxiety and Depression Scale (HADS), and the Self-Efficacy Scale for Terminal Cancer (SESTC) were administered before and immediately after the intervention.
Results:
The mean scores for the FACIT–Sp and affect regulation efficacy on the SESTC significantly increased, while the mean HADS score significantly decreased. Regarding the impressions after completion of the intervention, generally favorable evaluations were heard from families and medical staff members as well as from the subjects.
Significance of results:
A collage activity based on a life review may be effective for improving spiritual well-being, mitigating anxiety and depression, and improving self-efficacy. The collage itself was also useful in facilitating interactions with others, including family members, and the activity provided psychological support for families.
We aimed to address the prevalence of desire-to-die statements (DDSs) among terminally ill cancer patients in an acute palliative care unit. We also intended to compare the underlying differences between those patients who make desire-to-die comments (DDCs) and those who make desire-for-euthanasia comments (EUCs).
Method:
We conducted a one-year cross-sectional prospective study in all patients receiving palliative care who had made a DDC or EUC. At inclusion, we evaluated symptom intensity, anxiety and depression, and conducted a semistructured interview regarding the reasons for these comments.
Results:
Of the 701 patients attended to during the study period, 69 (9.8%; IC95% 7.7–12.3) made a DDS: 51 (7.3%) a DDC, and 18 (2.5%) an EUC. Using Edmonton Symptom Assessment Scale (ESAS) DDC group showed higher percentage of moderate-severe symptoms (ESAS > 4) for well-being (91 vs. 25%; p = 0.001), depression (67 vs. 25%; p = 0.055), and anxiety (52 vs. 13%; p = 0.060) than EUC group. EUC patients also considered themselves less spiritual (44 vs. 84%; p = 0.034). The single most common reason for a DDS was pain or physical suffering, though most of the reasons given were nonphysical.
Significance of results:
Almost 10% of the population receiving specific oncological palliative care made a DDC (7.3%) or EUC (2.5%). The worst well-being score was lower in the EUC group. The reasons for both a DDC and EUC were mainly nonphysical. We find that emotional and spiritual issues should be identified and effectively addressed when responding to a DDS in terminally ill cancer patients.
Doctor–patient communication in oncology, particularly concerning diagnostic disclosure, is a crucial factor related to the quality of the doctor–patient relationship and the psychological state of the patient. The aims of our study were to investigate physicians' opinions and practice with respect to disclosure of a cancer diagnosis and to explore potential related factors.
Method:
A self-report questionnaire developed for our study was responded to by 120 physicians from Coimbra University Hospital Centre and its primary healthcare units.
Results:
Some 91.7% of physician respondents generally disclosed a diagnosis, and 94.2% were of the opinion that the patient knowing the truth about a diagnosis had a positive effect on the doctor–patient relationship. A need for training about communicating with oncology patients was reported by 85.8% of participants. The main factors determining what information to provide to patients were: (1) patient intellectual and cultural level, (2) patient desire to know the truth, and (3) the existence of family.
Significance of results:
Our results point to a paradigm shift in communication with cancer patients where disclosure of the diagnosis should be made part of general clinical practice. Nevertheless, physicians still experience difficulties in revealing cancer diagnoses to patients and often lack the skills to deal with a patient's emotional responses, which suggests that more attention needs to be focused on communication skills training programs.
A steady increase in the number of patients requiring end-of-life care has been observed during the last decades. The assessment of healthcare students' attitudes toward end-of-life care is an important step in their curriculum, as it provides information about their disposition to practice palliative medicine. The Frommelt Attitude Toward Care of the Dying Scale (FATCOD–B) was developed to detect such a disposition, but its psychometric properties are yet to be clearly defined.
Method:
A convenience sample of 608 second-year medical students participated in our study in the 2012/2013 and 2013/2014 academic years. All participants completed the FATCOD–B. The sample was randomly divided in two subsamples. In the item analysis, reliability (Cronbach's α), internal consistency (item–total correlations), and an exploratory factor analysis (EFA) were conducted using the first subsample (n = 300). Using the second subsample (n = 308), confirmatory factor analysis (CFA) was performed using the robust ML method in the Lisrel program.
Results:
Reliability for all items was 0.699. Item–total correlations, ranging from 0.03 to 0.39, were weak. EFA identified a two-dimensional orthogonal solution, explaining 20% of total variance. CFA upheld the two-dimensional model, but the loadings on the dimensions and their respective indicators were weak and equal to zero for certain items.
Significance of Results:
The findings of the present study suggest that the FATCOD–B measures a two-dimensional construct and that several items seem in need of revision. Future research oriented toward building a revised version of the scale should pay attention to item ambiguity and take particular care to distinguish among items that concern emotions and beliefs related to end-of-life care, as well as their subjects (e.g., the healthcare provider, the patient, his family).
Palliative sedation is a common treatment in palliative care. The home is a difficult environment for research, and there are few studies about sedation at home. Our aim was to analyze this practice in a home setting.
Method:
We conducted a retrospective cross-sectional descriptive study in a home cohort during 2011. The inclusion criteria were as follows: 18 years or older and enrolled in the Palliative Home Care Program (PHCP) with advanced cancer. The variables employed were: sex, age, primary tumor location, and place of death. We also registered indication, type, drug and dose, awareness of diagnosis and prognosis, consent, survival, presence or absence of rales, painful mouth, and ulcers in patients sedated at home. We also collected the opinions of family members and professionals about the suffering of sedated patients.
Results:
A total of 446 patients (56% at home) of the 617 admitted to the PHCP between January and December of 2011 passed away. The typical patient in our population was a 70-year-old man with a lung tumor. Some 35 (14%) home patients required sedation, compared to 93 (49%) at the hospital. The most frequent indication was delirium (70%), with midazolam the most common drug (mean dose, 40 mg). Survival was around three days. Rales were frequent (57%) as well as awareness of diagnosis and prognosis (77 and 71%, respectively). Perception of suffering after sedation was rare among relatives (17%) and professionals (8%). In most cases, the decision was made jointly by professionals and family members.
Significance of Results:
Our study confirmed the role of palliative sedation as an appropriate therapeutic tool in the home environment.
The primary purpose of this metasynthesis study was to explore the end-of-life experiences of Indigenous peoples by synthesizing the findings of qualitative research.
Method:
Sandelowski and Barroso's methodology for synthesizing qualitative research was used and included (a) a comprehensive search, (b) appraising reports of qualitative studies, (c) classification of studies, and (d) synthesis of the findings. Research team members guided this process. This team was multidisciplinary and included Indigenous and non-Indigenous researchers from Canada, Australia, New Zealand, and the United States. Following a comprehensive search, 2255 studies were reviewed and assessed against five inclusion criteria: (a) studies on the experiences of Indigenous populations (all genders, 18 + years of age) at the end of life, (b) studies published in English from any country, (c) studies using qualitative and mixed-methods designs, and (d) studies published between 1993 and 2013.
Results:
Some 18 studies met the inclusion criteria, and their findings were synthesized. “Preparing the spirit” for transition to the next life was the overarching theme. “Preparing the spirit” occurred within the context of “where we come from.” Processes involved in “preparing the spirit” were healing, connecting, and protecting; through these processes, “what I want at the end of life” was realized. Although not the focus of the metasynthesis, a significant finding was that the studies reviewed identified very clear barriers within healthcare systems and current healthcare provider practices to “preparing the spirit.”
Significance of results:
The findings provide a beginning understanding of the end-of-life experiences of Indigenous peoples and a foundation for future research. More interpretive qualitative research is critical if palliative care services, the healthcare system, and healthcare providers are to reduce current barriers to “preparing the spirit” for the journey at the end of life.
People who undergo hematopoietic stem cell transplantation are highly dependent on their caregiver during their lengthy treatment and recovery. The effectiveness of their caregiver's social support can profoundly affect their day-to-day treatment experiences and, in turn, how they recall those experiences and are affected by them long after the treatment ends.
Method:
Our participants were 182 men and women who had undergone a transplant within the previous 9 months to 3 years. They completed baseline measures (including a measure of caregiver social support effectiveness) and then completed three writing assignments describing their transplant experiences. Linguistic analyses were conducted to investigate their use of words indicating negative emotions, cognitive processing (insight and causation), and practical problems with money and insurance. Theory-based hypotheses predicted associations between specific functional types of caregiver support (emotional, informational, and instrumental) and these word categories.
Results:
As hypothesized, the effectiveness of different functional types of support from a caregiver were uniquely associated with theoretically relevant categories of word use. Structural equation models indicated that more effective caregiver emotional support predicted lower use of negative emotion words; more effective caregiver informational support predicted lower use of causation words; and more effective caregiver instrumental support predicted lower use of words related to money and insurance.
Significance of results:
Our findings provide insights to guide research on the mechanisms through which caregiver support influences patient outcomes after stem cell transplantation. For instance, research suggests that these kinds of effects could have implications for survivors' current self-concept, psychosocial functioning, and meaning-making.
An increasing number of older people are living with incurable cancer as a chronic disease, requiring palliative care from specialized healthcare for shorter or longer periods of time. The aim of our study was to describe how they experience daily living while receiving palliative care in specialized healthcare contexts.
Method:
We conducted a qualitative research study with a phenomenological approach called “systematic text condensation.” A total of 21 participants, 12 men and 9 women, aged 70–88, took part in semistructured interviews. They were recruited from two somatic hospitals in southeastern Norway.
Results:
The participants experienced a strong link to life in terms of four subthemes: to acknowledge the need for close relationships; to maintain activities of normal daily life; to provide space for existential meaning-making and to name and handle decline and loss. In addition, they reported that specialized healthcare contexts strengthened the link to life by prioritizing and providing person-centered palliative care.
Significance of results:
Older people with incurable cancer are still strongly connected to life in their daily living. The knowledge that the potential for resilience remains despite aging and serious decline in health is considered a source of comfort for older people living with this disease. Insights into the processes of existential meaning-making and resilience are seen as useful in order to increase our understanding of how older people adapt to adversity, and how their responses may help to protect them from some of the difficulties inherent to aging. Healthcare professionals can make use of this information in treatment planning and for identification of psychosocial and sociocultural resources to support older people and to strengthen patients' life resources.
The objective of this study was to enhance the depth of existing knowledge about meanings and experiential outcomes of bodily care in the context of an inpatient specialist palliative setting.
Method:
Interpretative phenomenology was chosen as the study sought to explore individuals' lived experiences related to bodily care. Nine participants (five women, four men) of various ages and with various metastasized cancers and bodily-care needs, all from one specialist palliative care ward, participated. Data were collected with repeated narrative interviews and supplementary participating observations. Analysis was informed by van Manen's approach.
Results:
The following meanings and experiential outcomes of bodily care were revealed by our study: maintaining and losing body capability, breaching borders of bodily integrity, being comforted and relieved in bodily-care situations, and being left in distress with unmet needs. These meanings overlap and shape the nature of each other and involve comforting and distressing experiences related to what can be described as conditional dimensions: the particular situation, one's own experiences of the body, and healthcare professionals' approaches.
Significance of results:
The results, based on specialist palliative care patients' experiences, outline the meanings and outcomes that relate to the quintessence and complexity of palliative care, deriving from dying persons' blend of both basic and symptom-oriented bodily-care needs. Moreover, the results outline how these two dimensions of care equally influence whether comfort and well-being are facilitated or not. Considering this, specialist palliative care may consider how to best integrate and acknowledge the value of skilled basic nursing care as part of and complementary to expertise in symptom relief during the trajectories of illness and dying.