Hospital care or home care after allogeneic hematopoietic stem cell transplantation – Patients' experiences of care and support

PurposeTreatment at home during the pancytopenic phase after allogeneic hematopoietic stem cell transplantation (HSCT) has been an option for patients at our center since 1998. Earlier studies have shown that home care is safe and has medical advantages. In this study, we present patients' experiences of care and support while being treated in hospital or at home during the acute post-transplantation phase.MethodPatients (n = 41, 22 in hospital care and 19 in home care) answered the SAUC questionnaire at discharge (when home, or from hospital). Both statistical analysis and deductive content analysis were used.ResultsThe patients were highly satisfied with the care and support during the acute post-transplantation phase. Patients in home care were found to be more satisfied with care in general than patients in hospital care. The importance of safety, empathy, and encouragement from healthcare staff were expressed regardless of where care was given. Patients also felt that receipt of continuous, updated information during treatment was important and they had a strong belief in HSCT but were uncertain of the future regarding recovery.ConclusionsThe main findings of this study were that in comparison to hospital care, home care does not appear to have a significant negative effect on patients' experiences of care and support during the acute post-transplantation phase. In addition patients in home care felt safe, seen as a person and encouragement seem to empower the patients at home. Thus, this study may encourage other transplantation centers to provide home care if the patients want it.     

To treat? to befriend? to prevent? Patients' and GPs' views of the doctor's role

Objective-To examine and compare patients' and GPs' views of the doctor's role and patients' reasons for going to the doctor.

Design-A cross sectional questionnaire survey.

Setting-General practices across England.

Subjects-501 patients and 68 GPs.

Main outcome measures-Beliefs about the doctors' role and beliefs about patients' reasons for going to the doctor in terms of illness treatment, a psychosocial approach and preventive health care.

Results-A majority of both patients and GPs agreed that the doctor's role was primarily to treat illness. However, whereas patients showed greater endorsement for preventive health care and a belief that the doctor's role was to keep people healthy, GPs showed greater support for an emphasis on personal problems. In terms of patients' reasons for visiting their doctor, a majority of both patients and GPs agreed that illness prevention and illness treatment were important. However, more patients believed that patients visit the doctor for illness prevention than GPs, more of whom felt that patients seek help with their personal problems.

Conclusion-The results indicate a mismatch between patients' and GPs' beliefs, which has implications for understanding the impact of recent changes in primary care and the effects on GPs' job satisfaction.     

Parents of preterm-born children; sources of stress and worry and experiences with an early intervention programme – a qualitative study

Background

Preterm-born children are at increased risk of adverse developmental outcomes, and their parents may experience increased stress levels. The Mother–Infant Transaction Program (MITP) is an early intervention that aims to enhance the parent–infant relationship and child development. The present study investigated differences in parents’ experience of stress and concerns about caring for their preterm-born child according to whether they participated in the programme. Parental satisfaction with the intervention was also explored.

Methods

As part of a follow-up study at 36 months, a randomized controlled trial of the MITP—14 parents of 11 children from the intervention group, and 17 parents of 14 children from the control group were interviewed by the use of semi-structured focus group interviews. The interviews were analysed thematically.

Results

The intervention parents reported that the knowledge, advice, guidance and emotional support given during the intervention made them feel less stressed and more confident, competent and secure caring for their preterm born child than they would otherwise have been. The control parents described feeling less involved and emotionally supported, and seemed more anxious about their child’s development than the intervention parents. All parents were vigilant and alert to their child’s needs and monitored developmental milestones carefully.

Conclusion

This qualitative exploration of the influences of the MITP revealed a positive impact of the intervention and seems to be an important educational and supportive initiative. Thus, reducing parental stress and enhancing confidence in the parental role.

     

Socially constructed ‘value’ and vocational experiences following neurological injury

Purpose: Paid work is seen as a key outcome in rehabilitation. However, research demonstrates that because of normative expectations in the job market and workplace, experiences of disability can be intensified in a work context. We sought to explore this issue in more depth by analysing the effects of societal constructions of worker ‘value’ within individual case studies of people with acquired neurological injury.

Method: Instrumental case study of four heterogeneous participants, employing a discourse analysis approach.

Results: Participants described a perpetuation of discourses in which a disabled body or mind itself is seen to qualify, disqualify or limit a person’s value in employment. Nevertheless, interviews also highlighted discourses that constructed other worker identities: based on pre-injury identities, life experiences and other aspects of self. The contrasts between individuals illustrated how worker identities, when situated within broader societal discourses of worker ‘value’, can either constrain or expand the vocational opportunities available to individuals who experience disability. However, current and historical interactions about worker ‘value’ shaped the identities genuinely available to each individual.

Conclusion: Understanding how societal discourses enable and constrain worker identities may be vital to (a) facilitating valid opportunities and (b) navigating situations that could unintentionally hinder vocational possibilities.

• Implications for Rehabilitation

• This study shows how worker identities, situated within societal discourses of worker ‘value’, can constrain or broaden vocational opportunities available to individuals who experience disability.

• Barriers to gaining, maintaining and developing in employment could be re-envisaged in terms of what is limiting a person’s ability to embody an enabling identity.

• A knowledge of both societal discourses and individuals’ interactions with them may be vital to facilitating opportunities that users of rehabilitation services experience as valid options. This knowledge can also provide information with which to navigate situations that could potentially (sometimes unintentionally) constrain vocational possibilities.

     

Cancer survivors’ perspectives and experiences regarding behavioral determinants of return to work and continuation of work

Purpose: Supportive interventions to enhance return to work (RTW) in cancer survivors hardly showed positive effects so far. Behavioral determinants might have to be considered in the development of interventions to achieve sustained employability. This study aimed to explore cancer survivors’ perspectives and experiences regarding behavioral determinants of RTW and continuation of work.

Materials and methods: In this qualitative study, semi-structured telephone interviews were held with 28 cancer survivors. All participants were at working age, 1–2 years after diagnosis and employed at time of diagnosis. Thematic content analysis was performed.

Results: Work turned out to be a meaningful aspect of cancer survivors’ life, and most participants reported a positive attitude towards their job. Social support to RTW or to continue working was mainly received from family and friends, but pressure to RTW from the occupational physician was also experienced. Changes in expectations regarding work ability from negative to positive during the treatment process were observed. Those who applied active coping mechanisms felt equipped to deal with difficulties regarding work.

Conclusions: Behavioral determinants should be taken into account in the development of future interventions to support cancer survivors’ RTW. However, the causal relationship still has to be determined.

• Implications for rehabilitation

• Factors influencing occupational motivation among cancer survivors need to be understood in more detail.

• Previous studies in non-cancer populations have demonstrated that behavioral determinants, such as a positive attitude towards work, high social support and self-efficacy may increase return to work rates or shorten the time to return to work.

• Addressing behavioral determinants in future development of work-related interventions for cancer survivors is essential in achieving sustained employability.

     

The management of shoulder impingement and related disorders: A systematic review on diagnostic accuracy of physical tests and manual therapy efficacy

BackgroundDiagnostic accuracy of physical tests and effectiveness of musculoskeletal rehabilitation of shoulder disorders are still debated.ObjectivesTo investigate diagnostic accuracy of physical tests, efficacy of physiotherapy and coherence between target of assessment and intervention for shoulder impingement and related disorders like bursitis, rotator cuff and long head biceps tendinopathy and labral lesions.MethodsA systematic search of four databases was conducted, including RCTs and cross-sectional studies. Cochrane Risk of Bias and QUADAS-2 were adopted for critical appraisal and a narrative synthesis was undertaken.Results6 RCTs and 2 cross-sectional studies were appraised. Studies presented low to moderate risk of bias. There is a lack of evidence to support the mechanical construct guiding the choice of physical tests for diagnosis of impingement. Manual techniques appear to yield better results than placebo and ultrasounds, but not better than exercise therapy alone. Discrepancy between the goal of assessment strategies and the relative proposed treatments were present together with high heterogeneity in terms of selection of patients, type of endpoints and follow-ups.ConclusionsMusculoskeletal physiotherapy seems to be an effective treatment for patients with shoulder pain although it is still based on weak diagnostic clinical instruments. The adoption of more functional and prognostic assessment strategies is advisable to improve coherence between evaluation and treatment.     

Australian palliative care providers�� perceptions and experiences of the barriers and facilitators to palliative care provision

Objective  

People with advanced cancer who may benefit from specialised palliative care (SPC) do not necessarily access such services.     

Patients’ perspective on surgical intervention for Dupuytren’s disease – experiences,expectations and appraisal of results

Purpose: To explore patients’ perspectives on surgical intervention for Dupuytren’s disease (DD), focusing on patients’ appraisal of results, involving previous experiences, expectations and patient characters.

Method: The participants were 21 men, mean age 66 years, scheduled for DD surgery. Qualitative interviews were conducted 2–4 weeks before surgery and 6–8 months after surgery. The model of the Patient Evaluation Process was used as theoretical framework. Data were analyzed using problem-driven content analysis.

Results: Five categories are described: previous experiences, expectations before surgery, appraisal of results, expectations of the future and patient character. Previous experiences influenced participants’ expectations, and these were used along with other aspects as references for appraisal of results. Participants’ appraisal of results concerned perceived changes in hand function, care process, competency and organization, and could vary in relation to patient character. The appraisal of results influenced participants’ expectations of future hand function, health and care.

Conclusions: Patients’ appraisal of results involved multidimensional reasoning reflecting on hand function, interaction with staff and organizational matters. Thus, it is not enough to evaluate results after DD surgery only by health outcomes as this provides only a limited perspective. Rather, evaluation of results should also cover process and structure aspects of care.

• Implications for Rehabilitation

• To improve health care services, it is important to be aware of the role played by patient’s previous experiences, expectations as well as staff and organizational aspects of care.

• Knowledge about patients’ experience and view of the results from surgery and rehabilitation should be established by assessment of care effects on health as well as structure and process aspects of care.

• Evaluation of structure and process aspects of care can be done by using questions about if the patient felt listened to, received clear information and explanations, was included in decision-making, and their view of waiting time or continuity of care.

• Improving health care services means not only providing the best treatment method available but also developing individualized care by ensuring good interaction with the patient, providing accurate information, and working to improve the structure of the care process.

• Before treatment, health care providers should have a dialogue with the patient and consider previous experiences and expectations in order to ensure the patient has balanced expectations of the outcome.

     

What are the experiences of adults returning to work following recovery from Guillain-Barré syndrome? An interpretative phenomenological analysis

Purpose.?Guillain-Barré syndrome (GBS) is a transient inflammatory disorder affecting peripheral nerves, characterised by weakness and numbness in limbs, upper body and face. Residual problems affect a large minority, and complicate return to work. This qualitative study explored the experiences of people who returned to work following their diagnosis of GBS and recovery, to gain insight into factors that facilitated or inhibited this process.

Method.?Five people participated in in-depth interviews. Individual and common experiences were explored through interpretative phenomenological analysis.

Findings.?Three recurring themes are presented: the perceived value of work; losing and recovering a familiar identity at work; and dilemmas around using support and adaptations at work. Certain individual issues also emerged but are beyond the scope of this article. Participants tended to measure their recovery in terms of returning to work yet continued to experience certain physical and psychosocial difficulties at work related to GBS, which required active coping strategies. Limited public awareness of GBS was perceived as a hindrance when returning to work.

Conclusion.?This study provides a rich account of the experiences that people encounter returning to work following GBS. Rehabilitation specialists may offer more effective preparation for this process, drawing upon the issues identified.     

Phenomenology of Australian civilian hospital nurses’ lived experiences of the out-of-hospital environment following a disaster

BackgroundDisasters disrupt the fabric of communities. This includes disruption to the healthcare system that supports a disaster-affected community. Nurses are important members of disaster response teams. However, there is limited literature that describes nurses’ roles or experience in responding to disasters.AimThis paper employs a phenomenological approach to uncover moments of being an Australian civilian hospital nurse in the out-of-hospital environment following a disaster.MethodThis study uncovers moments of what it is like being an Australian civilian hospital nurse deployed to the out-of-hospital environment following a disaster. Individual interviews were undertaken at two points in time with each participant. Audio-recorded interviews were transcribed to textual narratives, which was then analysed. Several activities were undertaken to uncover moments and provide exemplars of moments, from the narrative.FindingsEight hospital nurses participated in this study. Five moments were uncovered: ‘on the way to a disaster’, ‘prior to starting work’, ‘working a shift in a disaster’, ‘end of a shift’, and ‘returning home’. Each moment has its uniqueness and singularity exemplifying an experience of nurses in the out-of-hospital disaster environment.DiscussionWhen compared to a hospital context, assisting during and/or following a disaster in the out-of-hospital environment is challenging. For example, nurses may need to do more with less resources, provide more frequent psychosocial support for more extenuating circumstances, and experience an unsettling return home at the end of the deployment.ConclusionsThis paper has provided new insights into what it may be like being an Australian civilian hospital nurse in the out-of-hospital disaster environment as part of a disaster medical assistance teams. Strategies to support nurses who assist during and/or following a disaster are important, so nurses can in turn provide care to people in disaster-affected communities.     

Family members’ needs and experiences of driving disruption due to health conditions or ageing

Abstract

Purpose: Family members often assume the caregiving role and provide practical assistance and emotional support when an individual is experiencing driving disruption due to health conditions or ageing. The purpose of this study was to understand the experiences, viewpoints and needs of family members with regards to an individual undergoing driving disruption across various population groups. Method: A scoping review was conducted through searching across six databases and hand searching articles published from 1985 to 2013. Findings from the articles specific to the aims of the review were extracted and summarised into common topics. Results: Twenty-seven articles were included; dementia or cognitive impairment (16 articles), older adults (8 articles) and brain injury (3 articles). The most common topic raised was related to decisions and consequences for the individual. Other concerns were related to family members’ occupational role changes, emotional and communication issues and support needs of family members and their recommendations for services. Conclusions: This review revealed the impact of driving disruption on family members but research is limited, especially in the area of brain injury. The majority of articles did not set out to explore family members’ experiences and needs and this highlights an area that requires critical attention.

• Implications for Rehabilitation

• Health professionals should be aware of the potential impact of driving disruption on family members.

• Family members frequently raise concerns regarding the decisions and consequences for their relative, but also bring up personal concerns such as changes to their own occupational roles and the communication and emotional issues they face during driving disruption.

• Unique challenges arise between family members of individuals of different health conditions, thus highlighting the importance of family caregiving research in various population groups.