The aim of the present study is to validate the Self-Efficacy in Palliative Care Scale (SEPC) in Spanish nursing professionals and students, to describe their levels of self-efficacy, and to determine the influencing factors. A validation study and a cross-sectional descriptive study were carried out, with the data analysed using contrast tests and multiple linear regression; 552 nurses and 440 nursing students participated. The Spanish version consists of 23 items and has a high degree of reliability (a = 0.944). Confirmatory factor analysis revealed one additional factor (i.e., management of psychosocial and spiritual aspects) in comparison to the original scale. Contrast tests revealed that the mean SEPC score was higher in professionals than in students (p < 0.001) and that the professionals who had higher levels of self-efficacy were older (p < 0.001), had more previous training (p < 0.001), and had more experience in end-of-life care (p = 0.001). The linear analysis results confirm a significant association between age and previous training in end-of-life care. The Spanish version of the SEPC is a reliable tool for both nursing professionals and students. The level of self-efficacy of both groups is moderate and is influenced by age, experience, and training in end-of-life care.
A death with dignity is influenced by the quality of care offered to patients. The objective of this study was to identify, through the firsthand experiences and insights of family caregivers, the key elements related to the care offered to patients with a terminal illness at the end of life. This multicenter qualitative study was based on the paradigm of hermeneutic phenomenology. Participants were relatives of patients with terminal illness who had been identified as primary caregivers. Five discussion groups and 41 in-depth interviews were organized with a total of 81 participants. The content of the interviews was analyzed based on the methods developed by Giorgi (J Phenom Psychol 1997;28(2):235-260). The results indicate the existence of 3 dimensions: the caregiver’s suffering, compassion satisfaction with the care provided, and the support of health care professionals. Understanding the experiences of family members providing end-of-life care allows improved care and provides dignity in death. Health and social systems must provide comprehensive assistance covering the different aspects of needed care. Health professionals occupy a privileged position in the care of these patients and their families.
Background: An important concern of healthcare professionals when exploring the wish to hasten death with patients is the risk of causing them some type of distress.
Aim: To assess the opinion of hospitalized patients with advanced cancer about the proactive assessment of the wish to hasten death.
Design: Descriptive, cross-sectional study.
Setting/participants: We assessed 193 advanced cancer patients admitted to an oncology ward for the wish to hasten death using a semi-structured clinical interview. After the assessment the participants were surveyed to determine whether they found the interview upsetting and, if so to what extent, and also their opinion regarding the assessment’s importance.
Results: The wish to hasten death was reported by 46 (23.8%) patients. The majority of patients (94.8%) did not find talking about the wish to hasten death to be upsetting, regardless of whether they presented it or not. The majority of patients (79.3%) considered that it was either quite or extremely important for the clinician to proactively assess the wish to hasten death and discuss this topic, regardless of whether they experienced it.
Conclusions: In this study, most of the advanced cancer patients did not find the assessment of wish to hasten death to be upsetting, and a substantial proportion of patients in this study believe that it is important to routinely evaluate it in this setting. These findings suggest that healthcare professionals can explore the wish to hasten death proactively in routine clinical practice without fear of upsetting patients.
Heart failure is a complex entity, with high morbidity and mortality. The clinical course and outcome are uncertain and difficult to predict. This document, instigated by the Heart Failure and Geriatric Cardiology Working Groups of the Spanish Society of Cardiology, addresses various aspects related to palliative care, where most cardiovascular disease will eventually converge. The document also establishes a consensus and a series of recommendations with the aim of recognizing and understanding the need to implement and progressively apply palliative care throughout the course of the disease, not only in the advanced stages, thus improving the care provided and quality of life. The purpose is to improve and adapt treatment to the needs and wishes of each patient, who must have adequate information and participate in decision-making.
PURPOSE: To develop and pilot the DD-14 scale, a 14-indicator scale based on the Nursing Outcome Classification "Dignified life closure" (1307).
METHODS: Sixteen experts selected 14 indicators for Spanish populations. Six care home nurses piloted the scale in 50 terminal patients without cognitive impairment. Factorial and reliability analyses were performed and correlations were determined with dependency, symptomatology, and palliative care quality.
FINDINGS: DD-14 demonstrated high reliability (α = 0.916) and a stable factorial structure. It was not influenced by sex, age, or disease and correlated positively with the Barthel index (r = .622; p = .00) and negatively with the Palliative Outcome Scale (r = -.542;p = .00).
CONCLUSIONS: DD-14 is a useful scale for evaluating end-of-life dignity.
IMPLICATIONS FOR NURSING PRACTICE: This instrument could be useful in planning nursing interventions.
OBJECTIVE: To analyse the level of knowledge and attitudes concerning living wills of nurses working in 3 hospitals of Servizo Galego de Saúde (Spain).
METHOD: Descriptive, cross-sectional, multi-centre study. Stratified sampling was carried out with nurses from the University Hospital Complexes of Ourense, Ferrol and Vigo. A sample size of 239 individuals was calculated. The data was collected during the first semester of 2018 using a validated self-administered questionnaire («Cuestionario de conocimientos y actitudes de los profesionales sanitarios en el proceso de declaración de voluntades vitales»).
RESULTS: A total of 262 nurses participated. Fifty percent believe that health professionals are obliged to inform about living wills. Two percent consider that they have enough information on the subject, and this is demonstrated in the knowledge questions, where between 61%-93% fail in the questions related to the documentation, use, and their legal aspects. Eighty-four percent consider that they have the obligation to uphold the values and beliefs of patients, and 89% that patients have the right to receive and decide on the right care. Thirteen percent consider that patients are not well informed about living wills, and 83% would recommend to chronic patients that they complete a living will.
CONCLUSIONS: Nurses have a great lack of knowledge about the legal aspects and the use of living wills, which makes them feel unable to inform their patients about them. Despite of the lack of knowledge, their attitude is positive and most of them state that they would recommend them to their patients.
Purpose: To describe physician attitudes to deep palliative sedation.
Methods: A nationwide e-survey of Spanish palliative care specialists was performed using vignettes which described patients close to death with intractable symptoms. Sedation levels were defined according to the Richmond Agitation-Sedation Scale. Multivariate analyses were performed to assess the explanatory factors involved in decision-making.
Results: Responses of 292 palliative care specialists were analyzed (response rate 40%). Ninety-four percent, 87%, and 81% of the respondents supported the use of palliative sedation in cases of irreversible refractory symptoms as hyperactive delirium and dyspnea at rest secondary to lung cancer and GOLD stage IV COPD; 60% agreed with the use of palliative sedation in cases of existential suffering. Logistic regression analysis found as the explanatory factor in not performing palliative sedation the physicians’ belief that sedation therapy constitutes undercover euthanasia (OR = 12, p < 0.01). Around 80% of physicians who decided on palliative sedation chose deep/complete sedation for every vignette; there were no common explanatory factors for decision-making for every vignette. The belief that sedation therapy equates to undercover euthanasia justifies not performing deep sedation in cases of irreversible refractory agitated delirium (OR = 7) and irreversible intractable dyspnea (OR = 6). Physician background in palliative care and sedation were associated with the selection of deep/complete sedation in cases of refractory delirium and cancer-associated dyspnea.
Conclusions: Spanish palliative physicians generally agree with the use of deep sedation as a proportionate treatment in dying patients with refractory symptoms. Decision-making is associated with physician beliefs regarding euthanasia and with the physician’s background in palliative care and sedation.
BACKGROUND: Intensive care to facilitate organ donation (ICOD) has been defined as the initiation or continuation of intensive care measures in patients with a devastating brain injury (DBI) in whom treatment for curative purposes is deemed futile, and who are considered possible organ donors, with the aim of offering donation after brain death (DBD) inside their end-of-life care plans. We describe the effect on the donation and transplantation activity of the implementation of ICOD protocol at a university hospital.
METHODS: Retrospective analysis (2015-2018) of demographics and outcomes of all patients with a DBI, in whom ICOD was considered as part of their end-of-life care in Vall d'Hebron University Hospital, Barcelona.
RESULTS: Of the 983 possible donors evaluated, ICOD was considered in 206 (21%), of whom 115 (55.8%) were medically unsuitable for donation. Family consent was obtained for 69 (76%) of the remaining patients. Refusal rate was twice as high when nontherapeutic ventilation was required for organ donation (34%) vs patients previously ventilated (13.6%) (P = .02). Patients subject to ICOD died in a median of 2 days (1-3 d) and 88.4% became actual donors (39 after brain death; 22 after circulatory death). Nine (17.6%) donors were finally not utilized. ICOD contributed to 29% (ranging from 27.7% in 2015 to 31.6% in 2018) of the 208 actual donors and 26% of the 603 organs transplanted.
CONCLUSIONS: ICOD is well-accepted by families and offers the donation option to an increasing number of patients at our hospital. It provides an important and sustained increment of the organ pool for transplantation.
Background: Many older people with serious chronic illnesses experience complex health problems for which palliative care is indicated. We aimed to examine the quality of primary palliative care for people aged 65–84 years and those 85 years and older who died non-suddenly in three European countries.
Methods: This is a nationwide representative mortality follow-back study. General practitioners (GPs) belonging to epidemiological surveillance networks in Belgium (BE), Italy (IT) and Spain (ES) (2013–2015) registered weekly all deaths in their practices. We included deaths of people aged 65 and excluded sudden deaths judged by GPs. We applied a validated set of quality indicators.
Results: GPs registered 3496 deaths, of which 2329 were non-sudden (1126 aged 65–84, 1203 aged 85+). GPs in BE (reference category) reported higher scores than IT across almost all indicators. Differences with ES were not consistent. The score in BE particularly differed from IT on GP–patient communication (aged 65–84: 61% in BE vs 20% in IT (OR=0.12, 95% CI 0.07 to 0.20) aged 85+: 47% in BE vs 9% in IT (OR=0.09, 95% CI 0.05 to 0.16)). Between BE and ES, we identified a large difference in involvement of palliative care services (aged 65–84: 62% in BE vs 89% in ES (OR=4.81, 95% CI 2.41 to 9.61) aged 85+: 61% in BE vs 77% in ES (OR=3.1, 95% CI 1.71 to 5.53)).
Conclusions: Considerable country differences were identified in the quality of primary palliative care for older people. The data suggest room for improvement across all countries, particularly regarding pain measurement, GP–patient communication and multidisciplinary meetings.
The Frommelt Attitude Toward Care of the Dying Scale (FATCOD) is designed to assess the attitudes of professionals and trainees toward caring for the dying patient and their family members. In this study the main aim is to adapt the FATCOD to a Spanish context (FATCOD-S). In addition, the relations between FATCOD-S, sociodemographic variables, emotional intelligence, and death attitudes have been analyzed. A sample of 669 Spanish nursing students from four Universities responded to a questionnaire. The exploratory factor analysis (EFA) concludes a structure composed of two significant factors. A confirmatory factor analysis (CFA) was carried out. The CFA supported a two-factor model. Students with past experience of death and those who had received training in palliative care scored significantly higher on both factors of the FATCOD-S (p < 0.01). The FATCOD-S is an effective and valid tool for measuring the attitudes of Spanish nursing students toward caring for patients at the end of life.
The lives of healthy and sick people are structured according to a variety of conceptual matrices. One of these matrixes consists of philosophical, spiritual, and religious convictions, being this especially relevant in the process of the end of life. The objective of the study is to understand the meaning that individuals at the end of life and the relatives of such individuals award spiritual and/or religious beliefs through an examination of caregiver narratives. Multicentric study was developed that used a qualitative design and a phenomenological approach. The study was conducted in the autonomous community of Andalusia, specifically in the provinces of Almeria, Malaga, Seville, Granada, and Huelva. The selection method was purposive sampling. Caregivers who had lost a relative in a period between 2 months and 2 years previously and who were not in a process of pathological grieving were selected for inclusion in the study. The method involved five discussion groups and 41 in-depth interviews, with a total of 87 participants. A change of paradigms is necessary in which, among other elements, the focus of palliative care is centered on the ability to address these spiritual needs, and healthcare professionals are trained to assist in the provision of such care. Another important consideration is the inequality of spiritual supported provided by clergy from various religions. At least in the cultural context of the research, Catholic chaplains were the only institutional figures whose presence was assumed necessary by health organizations. However, the cultural and/or religious diversity in the autonomous community in which the study was conducted is increasingly broad and complex. It appears necessary to incorporate a variety of clergies in health units so that all patients may find support, whether in terms of companionship or celebration.
OBJECTIVES: To explore the expressions of gratitude (EoG) received from patients and relatives and their influence on palliative care professionals (PCPs).
METHODS: A national online survey was sent to a representative of PCPs of each service listed in the national directory of palliative care (PC) services (n=272) (ie, hospital PC support team, hospice, paediatrics, etc). The questionnaire was pilot tested with experts. It comprised three sections: the overall perspective of receiving gratitude in the service, the personal experience of its influence and sociodemographic questions. A mailing schedule was designed to enhance the response rate.
RESULTS: 186 representatives from all over Spain completed the questionnaire (68% response rate). 79% of service representatives reported that they almost always received EoG. These came mainly from families (93%). These EoG were very often put on display (84%) and shared with other health professionals (HPs) involved in care (45%). EoG evoked positive feelings in the team members. Based on their experience, respondents attributed different functions to these EoG: increased professional satisfaction (89%), a source of support in difficult times (89%), mood improvement, encouragement to continue and rewards for effort (88%). Services, where gratitude was more frequently received, were associated with PCPs who more frequently reported being proud of their work (p=0.039, Pearson's correlation test).
CONCLUSIONS: Gratitude from patients and relatives was frequent and significant to those who work in PC. HPs considered that EoG offer multiple beneficial effects and also a protective role in their practice against distress and an increase in resilience skills.
BACKGROUND: Considering the extensive debate that is currently taking place in Spain regarding euthanasia, it is important to examine the attitude of professionals who perform most of their duties at the bedside of these patients and their families.
OBJECTIVES: The aim of the present study was to present an adaptation and validation of the Euthanasia Attitude Scale and to evaluate its psychometric properties among a sample of nursing students in Spain.
RESEARCH DESIGN: A cross-sectional study design was conducted.
PARTICIPANTS AND RESEARCH CONTEXT: Non-probabilistic sampling was used to recruit 396 Spanish nursing students.
METHODS: A self-report questionnaire, including socio-demographic data and the Euthanasia Attitude Scale, were used for data collection. The psychometric properties of the Euthanasia Attitude Scale were assessed, including reliability and validity. Fit indices of the overall model were computed.
ETHICAL CONSIDERATIONS: This study was approved by the Hospital Ethical Committee. Students were informed of the aims and procedures and provided written informed consent prior to data collection.
RESULTS: The factorial solution comprised four domains and the scale demonstrated adequate internal consistency (Cronbach's alpha = .878). For the exploratory factor analysis, the Kaiser-Meyer-Olkin index of sampling adequacy was .905 and the Bartlett's Test of Sphericity was 2972.79 (p < .001). The initial factorial solution revealed four factors with eigenvalues of 6.78 for the first factor, 1.90 for the second one, 1.29 for the third, and 1.10 for the fourth factor. Moreover, there was a significant relationship between religiosity and the domains of the Euthanasia Attitude Scale.
DISCUSSION: This study obtained a Cronbach's alpha coefficient of .88 which is in consonance with the findings reported by other studies whereby none of the items were removed and the initial structure based on four domains was conserved, with a factorial solution that explains 52.79% of the total variance. The displacement of some items of the domain may be explained by certain religious and/or cultural components as, in accordance with other studies, people with firm religious beliefs are more inclined to refuse euthanasia.
CONCLUSION: According to the findings of this study, the Euthanasia Attitude Scale is a reliable and valid instrument to measure the attitudes toward euthanasia in a sample of Spanish nursing students. This Spanish adaptation will be valuable in future studies examining the attitude and implication of nurses, understanding that nurses are key figures in the euthanasia debate.
Background: The most important decision after diagnosing terminal cancer is whether to provide active therapy or withhold treatment.
Objective: To analyze the aggressiveness of care by evaluating systemic anticancer therapy (SACT) given near to death, describing this care and identifying factors that determine its use.
Design: This involves retrospective observational cohorts study.
Setting/Subjects: This involves patients with metastatic tumors who died at a University Hospital in Spain between 2015 and 2016.
Measurements: Data obtained from prescribing oncologists and patients' clinical records, type of cancer, and information on treatment. The dependent variable used was the interval between the date of the last dose and date of death.
Results: Ninety-four (32.60%) of 288 patients received SACT in the last month of life. This cohort had a higher frequency of lung cancer (OR: 1.58; CI 95%: 1.14-2.18), received more care from oncologist 2 (OR: 1.50; CI 95%: 1.08-2.08), had fewer last-line treatment cycles (OR: 1.28; CI 95%: 1.13-1.45), a lower subjective response (OR: 3.13; CI 95%: 1.34-7.29), less clinical benefit (OR: 2.38; CI 95%: 1.04-5.55), more visits to the Emergency Department (OR: 1.59; CI 95%: 1.06-2.38), and less care from the Palliative Care Unit (OR: 4.55; CI 95%: 2.69-7.70). In multivariate analysis, the predictors of having received SACT close to death remained: receiving fewer cycles of treatment (OR: 1.28; CI 95%: 1.12-1.47) and less palliative care (OR: 4.54; CI 95%: 2.56-7.69).
Conclusions: A third of cancer patients received SACT in the last month of life with less efficacy and poorer quality of care than patients not receiving it.
The purpose of this qualitative study was to discover the coping strategies used by Spanish (European) women to cope with a pregnancy loss. Sixteen women with miscarriages and stillbirths were interviewed. All of the women were Spanish European. The mean age of the women was 35 years, and most were university graduates, married, employed, and with living children. Audio-recorded interviews and field notes were transcribed and then subsequently coded and analyzed in individual or team sessions. Construction and confirmation of the categories and related themes derived from the data was a collaborative process. Two themes emerged regarding the coping strategies used by women: talking and avoiding. This study expands the theoretical model "Multicultural Model of Coping after Pregnancy Loss" and guides health providers regarding interventions used in practice.
Between 2014 and 2017, four patients with widespread cancer were referred to a home palliative care team from a hospital in Oviedo (Spain) with subcutaneous elastomeric infusion pump containing 180-260 mg/day of morphine for previously uncontrolled pain. 3-4 rotations were performed over 5-11 days, gradually substituting morphine for oral methadone (three times a day) to minimise the risks of rapid conversion, with a highly variable final subcutaneous morphine:oral methadone ratio (5:1 to 17:1), guided by the absence of pain, and to enhance the patient's functional capacity avoiding device dependence. The final methadone dose varied between 15 and 39 mg/day. There was daily telephone supervision and visits every 2-4 days. Patient demise occurred 56, 111, 168 and 350 days following the opioid conversion, and methadone was maintained until then. In all cases and prior to concluding the rotation, pain was controlled and sleepiness had subsided.
INTRODUCTION: The prevention and relief of suffering are regarded as a goal at the end of life; therefore, suffering assessment at the end of life is essential. In this regard, we need instruments that allow us to evaluate this construct for gathering more evidence, as the assessment of suffering is increasingly used in research and the clinical setting. Many measures have been designed to assess this construct, and the selection of the most appropriate instrument is crucial. The aims of this systematic review are to (1) identify the measures assessing suffering in patients with advanced disease and their psychometric properties and (2) evaluate the methodological quality of studies on measurement properties.
METHODS AND ANALYSIS: The protocol of this systematic review was developed using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols Guidelines. A systematic psychometric review of measures assessing suffering in patients with advanced disease and their psychometric properties will be carried out according to the COnsensus-based Standards for the selection of health status Measurement INstruments (COSMIN). The search strategy will be performed following the Peer Review of Electronic Search Strategies. Searches will be conducted in Cumulative Index to Nursing and Allied Health Literature, Medline, PsycINFO, Cochrane Library, SciELO, Open Grey, Scopus, Web of Science and COSMIN database of systematic reviews, and it will be limited by time (1980-2018) and language (only literature in English and Spanish). Literature will be evaluated by two independent reviewers according to the COSMIN checklist, and measurement properties data of each study that meet the inclusion criteria will be scored independently by two researchers according to COSMIN quality ratings.
ETHICS AND DISSEMINATION: Ethical approval is not necessary for systematic review protocols. The results will be disseminated by publication in a peer-reviewed journal and presented at a relevant conference.
BACKGROUND: In palliative care (PC) patients and relatives (P/R) often show their gratitude to the healthcare professionals (HP) who care for them. HP appreciate these displays of gratitude, although the impact of the same has not been examined in detail. Publications analysed tell personal experiences in which HP say that displays of gratitude create sensations of well-being, pride and increased motivation to carry on caring. No systematic examination in PC was found. These aspects related to gratitude may be important in the field of PC, where there is constant exposure to suffering and the preoccupation which arises from wanting to help HP to go on with their work, but it needs closer study and systemisation. The purpose of this study is to understand the significance and the role of the gratitude received from P/R for palliative care health professionals (PCHP).
METHODS: A suitable mixed method will be used. The first phase will be quantitative and will consist of a survey, piloted by experts, whose goal is to explore the current situation in Spain as regards displays of gratitude received by HP at PC services. It will be sent by e-mail. The results from this part will be incorporated into the second part which will be qualitative and whose goal is to understand the significance of the experience of receiving displays of gratitude from the perspective of PCHP, using a phenomenological approach. Interviews will be undertaken amongst PCHP. The interview guide will be designed after taking the survey results into account. The project has been granted ethical approval.
DISCUSSION: These results are set to provide a key contribution within the context of the growing preoccupation on how to care for HP, how to ensure retention and keep them from resigning, as well as preventing burnout, emotional fatigue and boosting their resilience. In order to do this, it is both interesting and ground breaking, to analyse the repercussion of spontaneous gratitude shown by P/R towards PCHP, to see if this is a useful resource to reduce these problems and to encourage the greater presence of dignity and humanisation, for both those receiving care and for those providing it. This gratitude may be one of these strategies.
Objective: Healthcare professionals who work in palliative care units face stressful life events on a daily basis, most notably death. For this reason, these professionals must be equipped with the necessary protective resources to help them cope with professional and personal burnout. Despite the well-recognized importance of the construct "meaning of work," the role of this construct and its relationship with other variables is not well-understood. Our objective is to develop and evaluate a model that examines the mediating role of the meaning of work in a multidisciplinary group of palliative care professionals. Using this model, we sought to assess the relationships between meaning of work, perceived stress, personal protective factors (optimism, self-esteem, life satisfaction, personal growth, subjective vitality), and sociodemographic variables.
Method: Professionals (n = 189) from a wide range of disciplines (physicians, psychologists, nurses, social workers, nursing assistants, physical therapists, and chaplains) working in palliative care units at hospitals in Madrid and the Balearic Islands were recruited. Sociodemographic variables were collected and recorded. The following questionnaires were administered: Meaning of Work Questionnaire, Perceived Stress Questionnaire, Life Orientation Test-Revised, Satisfaction with Life Scale, Subjective Vitality Scale, Rosenberg Self-Esteem Scale, and the Personal Growth Scale.
Result: The explanatory value of the model was high, explaining 49.5% of the variance of life satisfaction, 43% of subjective vitality, and 36% of personal growth. The main findings of this study were as follow: (1) meaning of work and perceived stress were negatively correlated; (2) optimism and self-esteem mediated the effect of stress on the meaning attached to work among palliative care professionals; (3) the meaning of work mediated the effect of stress on subjective vitality, personal growth, and life satisfaction; and (4) vitality and personal growth directly influenced life satisfaction.
Significance of results: The proposed model showed a high explanatory value for the meaning professionals give to their work and also for perceived stress, personal protective factors, and sociodemographic variables. Our findings could have highly relevant practical implications for designing programs to promote the psychological well-being of healthcare professionals.
BACKGROUND: Pediatric palliative care programs aim to improve the quality of life of children with severe life-threatening illnesses, and that of their families. Although rehabilitation and physical therapy provides a valuable tool for the control of symptoms, it has been poorly researched to date. Since the family represents such a fundamental support in these cases, it is important to deepen our understanding regarding the value of implementing rehabilitation programs from the parents' perspective.
AIM: The aim of this paper was to explore parents' experiences regarding the implementation of a physical rehabilitation program in pediatric palliative care.
DESIGN: A qualitative methodology was chosen.
SETTING: The unit of pediatric palliative care at the Hospital Niño Jesús (Madrid, Spain).
POPULATION: The inclusion criteria were: a) parents of children, irrespective of their diagnosis, b) integrated within the program of palliative care at the time of study, c) aged between 0-18 years, c) must be receiving Home-Based Rehabilitation Program by the Pediatric Palliative Care team. Fourteen parents were included.
METHODS: Purposeful sampling method was implemented. Data collection consisted of unstructured and semi-structured interviews. A thematic analysis was performed to interpret transcripts. Guidelines for conducting qualitative studies established by the Consolidated Criteria for Reporting Qualitative Research were followed.
RESULTS: Three main themes were identified: a) The meaning of physical rehabilitation to parents, b) Physical rehabilitation as an opportunity for patients to stay in their home environment and c) Home-based physical rehabilitation as part of the families' social environment.
CONCLUSIONS: The main needs of a home physical rehabilitation program are to decrease pain and suffering, together with improving family education and training.
CLINICAL REHABILITATION IMPACT: The experience of rehabilitation programs at home is essential in order to improve both the quality of life and the quality of care of affected children and parents.