| 1. |
- Abrahamsen Grøndahl, Vigdis, 1964-
(författare)
-
Patients’ perceptions of actual care conditions and patient satisfaction with care quality in hospital
- 2012
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- There are theoretical and methodological difficulties in measuring the concepts of quality of care and patient satisfaction, and the conditions associated with these concepts. A theoretical framework of patient satisfaction and a theoretical model of quality of care have been used as the theoretical basis in this thesis. Aim. The overall aim was to describe and explore relationships between person-related conditions, external objective care conditions, patients’ perceptions of quality of care, and patient satisfaction with care in hospital. Methods. Quantitative and qualitative methods were used. In the quantitative study (I-III), 528 patients (83.7%) from eight medical, three surgical and one mixed medical/surgical ward in five hospitals in Norway agreed to participate (10% of total discharges). Data collection was conducted using a questionnaire comprising four instruments: Quality from Patients’ Perspective (QPP); Sense of Coherence scale (SOC); Big Five personality traits – the Single-Item Measures of Personality (SIMP); and Emotional Stress Reaction Questionnaire (ESRQ). In addition, questions regarding socio-demographic data and health conditions were asked, and data from ward statistics were included. Multivariate statistical analysis was carried out (I-III). In the qualitative study 22 informants were interviewed (IV). The interviews were analysed by conventional content analysis. Main findings. Patients’ perceptions of quality of care and patient satisfaction ranged from lower to higher depending on whether all patients or groups of patients were studied. The combination of person-related and external objective care conditions explained 55% of patients’ perceptions of quality of care (I). 54.7% of the variance in patient satisfaction was explained, and the person-related conditions had the strongest impact, explaining 51.7% (II). Three clusters of patients were identified regarding their scores on patient satisfaction and patients’ perceptions of quality of care (III). One group consisted of patients who were most satisfied and had the best perceptions of quality of care, a second group of patients who were less satisfied and had better perceptions, and a third group of patients who were less satisfied and had the worst perceptions. The qualitative study revealed four categories of importance for patients’ satisfaction: desire to regain health, need to be met in a professional way as a unique person, perspective on life, and need to have balance between privacy and companionship (IV). Conclusions. Patients’ perceptions of quality of care and patient satisfaction are two different concepts. The person-related conditions seem to be the strongest predictors of patients’ perceptions of quality of care and patient satisfaction. Registered nurses need to be aware of this when planning and conducting nursing care. There is a need of guidelines for handling over‑occupancy, and of procedures for emergency admissions on the wards. The number of registered nurses on the wards needs to be considered. Healthcare personnel must do their utmost to provide the patients with person‑centred care.
|
|
| 2. |
- Almerud, Sofia, 1969-
(författare)
-
Vigilance & Invisibility : Care in technologically intense environments
- 2007
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- This thesis focuses on the relationship between technology and caring in technologically intense environments. The overall aim was to uncover the meaning of care in those environments as experienced by patients and caregivers. Moreover, the study aimed at finding a deeper understanding for the almost total dominance of technology in care in intensive care. The thesis includes three empirical studies and one theoretical, philosophical study. The research was guided by a phenomenological and lifeworld theoretical approach. Research data consist of quantitative parameters and qualitative interviews with caregivers and patients. Data was analysed and synthesised with aim of seeking meaning through openness, sensitivity and a reflective attitude. The goal was to reach the general structure of the phenomenon and its meaning constituents. The result shows that an intensive care unit is a cognitive and emotionally complex environment where caregivers are juggling a precarious handful of cards. Despite being constantly monitored and observed, intensive care patients express that they feel invisible. The patient and the apparatus easily meld into a unit, one item to be regulated and read. From the patients’ perspective, caregivers demonstrate keen vigilance over technological devices and measured parameters, but pay scant attention to their stories and experiences. Technology, with its exciting captive lure and challenging character, seduces the caregivers and lulls them into a fictive sense of security and safety. Technical tasks take precedence or have more urgency than caring behaviour. A malaise settles on caregivers as they strive for garnering the security that technology promises. Yet simultaneously, insecurity creeps in as they read the patient’s biological data. Technical tasks take precedence over and seemingly are more urgent than showing care. Listening, inspiring trust, and promoting confidence no longer have high priority. Trying to communicate ‘through’ technology is so complex, that it is a difficult challenge to keep in perspective what or who is the focus; ‘seeing’ or caring. Technology should be like a catalyst; do its ‘thing’ and withdraw ‘unnoticed’. This thesis has contributed in gaining deeper knowledge about care in technologically intense environments and the impact of technology. The main contribution is that caregivers need to be aware that the roar of technology silences the subtle attempts of the critically ill or injured person to give voice to his or her needs. In conclusion, the challenges for caregivers are to distinguish when to heighten the importance of the objective and measurable dimensions provided by technology and when to reduce their importance. In order to magnify the patients’ lived experiences. It is a question of balancing state-of-the-art technology with integrative and comprehensive care, of harmonizing the demands of subjectivity with objective signs.
|
|
| 3. |
- Arvidsson, Susann
(författare)
-
Health promoting factors in people with chronic musculoskeletal pain or with rheumatic diseases: a descriptive and interventional study
- 2011
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Aim: The overall aim of this thesis with a salutogenic approach was to describe health promoting factors in people with chronic musculoskeletal pain and in people with rheumatic diseases, and to evaluate the effects of an intervention study with a self-care promoting PBL-program for people with rheumatic diseases having chronic musculoskeletal pain, sleep disturbances and/or fatigue. Methods: This thesis is comprised of four samples: a randomly selected sample from a Swedish general population (study I) and three different samples containing people with rheumatic diseases registered at a hospital for rheumatic diseases in the southwest of Sweden (studies II, III and IV). Study I had a longitudinal cohort design with an eight-year follow-up in a general population. There were 1109 participants without chronic pain and 700 participants with chronic musculoskeletal pain. Study II had a longitudinal cohort design with participants with rheumatic diseases (n=185) 12 months after rehabilitation at a hospital for rheumatic diseases. Study III had a descriptive qualitative design with a phenomenological approach based on a reflective life-world perspective. Twelve participants were interviewed about their experiences about health-promoting self-care. Study IV had a randomised controlled design with post-test six months after the one-year self-care promoting problem-based learning (PBL) program for people with rheumatic diseases. The participants were randomly assigned to the experimental group, 54 participants, or to the control group, 148 participants. Data in studies I, II and IV were analysed with statistics. In study III a Husserlian phenomenological approach based on a reflective life-world perspective was used in the data collection and analysis. Results: Study I: Although participants without chronic musculoskeletal pain reported better health-related quality of life (HRQL) than participants with chronic musculoskeletal pain, similar health factors were found to promote a better HRQL in the eight-year follow-up. The most important factors were feeling rested after sleep and having good sleep structure. Study II: The most important factors promoting better outcome in HRQL 12 months after rehabilitation in participants with rheumatic diseases were having a strong sense of coherence (SOC), feeling rested after sleep, having work capacity, and having good sleep structure. Study III: The meaning of health-promoting self-care as experienced by people with rheumatic diseases was that self-care takes place against a background of continual hope and belief to be able to influence health in positive ways. Self-care was a way of life and implied being ready to understand and respond to signals from the body. Three interrelated constituents elucidated the experiences: dialogue, power struggle and choice. Study IV: At the six month follow-up the participants in the experimental group had stronger empowerment after participation in the self-care promoting PBL-program compared with the control group which only got standard care for people with rheumatic diseases. There were no differences in HRQL, self-care ability, SOC, pain, quality of sleep or fatigue between the experimental group and the control group. The participants in the experimental group also stated that they had implemented lifestyle changes which they had not done without the PBL-program. Conclusion: The results of this thesis provide a valuable and useful insight in health promoting factors in people with chronic musculoskeletal pain and in people with rheumatic diseases, but also in that people with rheumatic diseases have benefit from taking part in patient education with a self-care promoting PBL-program. These results contribute to evidence supporting the introduction of a more salutogenic approach in rheumatology care and research.
|
|
| 4. |
- Bergsten, Ulrika, 1966-
(författare)
-
Patients' and healthcare providers' experiences of the cause, management and interaction in the care of rheumatoid arthritis
- 2011
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Aim: The overall aim of this thesis was to explore and describe patients’ and healthcare providers’ experiences of the causes, management and interaction in the care of rheumatoid arthritis (RA). Method: The thesis is based on four studies. Studies I and II contain data from an epidemiologic project involving patients who were recently diagnosed with RA. The patients answered an open-ended question about their conception of the cause of their RA (Study I). Qualitative data from 38 patients were analysed using the phenomenographic approach in order to identify variation in conceptions. The results of Study I formed the basis for categorizing the conceptions of 785 patients in the search for patterns of background factors (Study II). Study III aimed to explore how patients experienced their management of RA in everyday life. Data were collected by interviews with 16 patients and analysed according to Grounded Theory (GT). In study IV, the aim was to explore healthcare providers’ experiences of their interaction with patients’ management of RA. Data were collected by interviews with 18 providers representing different professions and analysed using GT. Findings: Patients’ conceptions of the cause of their RA revealed new aspects from the patient perspective that can complement pathogenetic models. Two descriptive categories emerged: consequences beyond personal control and overloaded circumstances, which included six categories of conceptions (Study I). The most common conceptions of the cause of RA were unexpected effects of events followed by work and family-related stress (Study II). Background factors that influenced the conceptions of the cause were age, sex and educational level. Patient management of RA involved using personal resources together with grasping for support from others in their striving for a good life. When linking these aspects together, four ways of management emerged: mastering, struggling, relying and being resigned (Study III). Healthcare providers’ experiences of their interaction with patients’ management shed light upon the important issue of delivering knowledge and advice. The providers’ attitudes constituted one cornerstone and patients’ responses the other. The providers reported that the interaction led to different outcomes: completed delivery, adjusted delivery and failed delivery. Conclusions: The findings contribute new knowledge from both patients’ and healthcare providers’ perspectives, which could be used to develop a more person-centred approach in rheumatology care. Person-centred care involves taking patients’ beliefs and values into account in addition to creating a trusting relationship between patient and provider. A successful person-centred approach requires an organisation that supports the person-centred framework.
|
|
| 5. |
- Brännström, Margareta, 1957-
(författare)
-
Ett liv i berg och dalbana : innebörder av att leva med svår kronisk hjärtsvikt i palliativ avancerad hemsjukvård utifrån patienters, närståendes och sjuksköterskors berättelser
- 2007
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall purpose of this thesis is to illuminate meanings of living with severe chronic heart failure (CHF) in palliative advanced home care (PAHC) as disclosed through patients’, close relatives’ and nurses’ narratives. This thesis comprises four papers that illuminate the phenomenon from various perspectives and with different focus. In paper I four patients with severe CHF in PAHC were interviewed. In paper II three of their close relatives were interviewed. In paper III one man and his wife in PAHC were interviewed at 3-5 month intervals over a 4.5-years period. In paper IV 11 nurses in PAHC were interviewed. In all papers narrative interviews were conducted and the text was interpreted using a phenomenological-hermeneutic method. The result shows that meanings of living with severe CHF in PAHC is to be ‘knocking on death’s door’ yet surviving. This means never knowing what to expect of tomorrow as one suffers from a complex array of unpredictable, interwoven symptoms. The course of the illness forces sufferer to ride a symbolical ‘roller coaster’, an ongoing oscillation between ‘ups and downs’. Being offered a safety belt in the ‘roller coaster’ by the PAHC team means feelings of safety (I). Meanings of being a close relative of a person with severe CHF in PAHC is to be following the life- threatening ups and downs that the ill person goes through. It is like being a fellow passenger on the ‘roller coaster’ ride that is their loved one’s disease, with burdensome responsibility for easing the ‘downs’ and supporting the ‘ups’. This means being on primary call, always on standby to mediate security and pleasure. In the deepest downs it is also to call for the back-up call i.e. the PAHC team (II). Meanings of living the ‘ups and downs’ over time is being captive in a roller-coaster ride, side by side, with the ‘ups and downs’ caused by the illness. Living close to death is inescapable when recurrent periods of deepest ‘downs’ force one to face that one’s life together is coming to an end. The relationship between the spouses is severely tested but seems to withstand the strain and meaning is found in togetherness in life. Sharing the safety belt on the ‘roller coaster’, offered by the PAHC team, evokes feelings of security. However, the safety belt is adjusted to the man with severe CHF leaving the wife partly without comfort and at times uncertain, especially in the deepest ‘downs’ (III). Meanings of being a palliative nurse for patients with severe CHF in PAHC is being firmly rooted and guided by the values of palliative culture. Being a facilitator for the patient with CHF to live his/her everydaylife in the best way possible is difficult, challenging but overall positive. The nurses get into a tight corner when palliative culture values clash and do not correspond to nurses’ interpretation of what is good for the patient with severe CHF. There is a limit to nurses’ pliability to patients’ and close relatives’ will, as they are strongly convinced that resuscitation is not an option. Nurses have already made up their mind about that they do not perform heart- lung resuscitation (IV). The comprehensive understanding is that meanings of living with severe CHF in PAHC is being captive in a ‘roller-coaster’ life with varying periods between unpredictable improvement and deterioration of the body, for the rest of life. Living with the unpredictable, deteriorated body means to oscillate between enduring the suffering in ‘downs’ and enjoying life in ‘ups’ (I-III). Living with death so close over and over again i.e. being in a limit situation evokes feelings of uncertainty (I-IV) and confidence (I-III). Being positive dependent on PAHC facilitates a life as normal as possible in togetherness at home (I-IV). The comprehensive understanding of the four papers (I-IV) are discussed in the light of a theoretical framework from the German psychiatrist and philosopher Karl Jaspers thoughts about limit situation, the Danish philosopher K.E Lögstrup thoughts about the ethical demand, palliative theories and relevant empirical studies.
|
|
| 6. |
- Elmqvist, Carina, 1964-
(författare)
-
Akut omhändertagande : i mötet mellan patienter, närstående och olika professioner på skadeplats och på akutmottagning
- 2011
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Aim: To describe and develop understanding of the patient’s first encounter with the involved persons at the scene of an accident and at the emergency department; with a special focus on describing the meaning of emergency care of patients in these caring contexts. Method: The thesis uses a reflective lifeworld research (RLR) approach founded on phenomenological philosophy. The purpose with this approach is to describe the essential meaning and the variations of a phenomenon. Interviews with a lifeworld perspective were used for data collection and analyzed according to the RLR approach for searching for the essence of the phenomenon. The four essences in the studies (I-IV) establish a general structure for the phenomenon.Findings: Emergency care is characterized by an organisation, whose goal and resources are focused on life-saving, and that encounters a human being with needs of emergency care as well as existential support. The responsibility in emergency care means an intertwining of doing and being. The one who is in charge takes responsibility for performing or “doing” medical actions, and by “being” close and present in the situation the patient can at the same time feel an existential support. The responsibility for the injured or ill body is handed over to a chain of persons with more and more specialized competence and resources. This hand-over entails a relief for all involved but fails in one link in the chain, namely to explicitly hand back the responsibility to the patient. When the patient’s condition allows the distance to be larger the responsibility pales and the existential support decreases. A gap between doing and being arises where the patient is left to regain control and independence. The intertwining of doing and being, which appears as soon as the one in charge is close and present to the patient, facilitates the hand-over to the patient who in a natural way is able to receive the responsibility with possibilities to be able to conclude the encounter.Conclusions: A new understanding of emergency care appears which entails more than just life support measures. Emergency care includes different ways of communication in order to hand over the responsibility and complete the care chain back to the patient in a safe way. The results highlight the importance of empowering patients with a confirming, communicative contact throughout the whole caring process in order for them to retain their identity. There are also implications for educating students and personnel in inter-professional communication and work. In order to assist the intertwining between doing and being there are needs for the development of supportive structures for inter-professional reflection, which in turn would improve the interaction between patients and professionals in their encounter.
|
|
| 7. |
- Eriksson, Kerstin
(författare)
-
Postoperative pain assessment and impact of pain on early physical recovery, from the patients' perspective
- 2017
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Pain is a common postoperative experience. Guidelines recommend performing regular pain assessments, which include self-rated pain and additional communication to capture patients' experiences. During hospitalisation, pain intensity is found to be a vital factor influencing other aspects of an early physical recovery, and is consequently an important item in questionnaires for recovery. These tools consist of extensive questionnaires which are difficult to use in everyday clinical work. A simplified method of monitoring postoperative recovery would benefit both patients and healthcare professionals.Aim: The overall aim of this thesis was twofold: (A) to determine the ability of extending the use of pain ratings to reflect and predict early physical postoperative recovery and (B) to describe patients’ perspectives on pain assessments.Methods: The studies were carried out at one (I), three (IV) and four hospitals (II, III) involving general surgical and orthopaedic inpatients. Two quantitative methods were used based on data from questionnaires and medical records. They consisted of one cross-sectional study (I) and one study with repeated measures (IV). An association was sought between pain intensity and postoperative recovery on days 1 and 2 (I, IV), and prehospital data (IV). Two qualitative methods were used involving a phenomenographic (III) approach and Critical Incident Technique (IV), where semi-structured interviews were performed postoperatively and analysed inductively in accordance with the approach.Results: An association was found between moderate/severe average pain intensity compiled from monitoring records and impact on early physical postoperative recovery on day 1 (I). Retrospective average pain intensity at rest and during activity reflected impact on recovery on postoperative day 1 (IV). Severe pain intensity at rest and during activity on postoperative day 1 predicted impact on physical recovery items on day 2 (IV). The use of the Numeric Rating Scale (NRS 0-10) was considered to facilitate communication about pain, but to involve difficulties of interpretation and place demand on healthcare professionals and care routines (II). Patients’ descriptions of their experiences when in need of describing pain indicated two main areas: patients’ resources when needing to describe pain and ward resources for performing pain assessments (III). Descriptions of their actions when they were in pain indicated two main areas: patients used active strategies when needing to describe pain or patients used passive strategies when needing to describe pain (III).Conclusions: This thesis contributes to knowledge about the possibility of using patients' self-rated average pain intensity to reflect early physical postoperative recovery on day 1 and to predict recovery on the following day. The pain scale gave patients and healthcare professionals a shared vocabulary, which facilitated communication. Furthermore, dialogue during pain assessments was described as critical in ascertaining whether pain intensity had an impact on different aspects of physical recovery. Environmental factors such as the attitude of healthcare professionals, workload and staffing influenced how pain assessments were performed.
|
|
| 8. |
- Gimbler Berglund, Ingalill
(författare)
-
Developing guidelines in nursing care of children with Autism Spectrum Disorder in high technology health care settings
- 2017
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction. The high technology environment such as a radiology and anaesthesia department in a typical health care setting can many times be a frightening environment for children. Children with neurodevelopmental disorders, such as Autism Spectrum Disorder (ASD), have problems with communication and social interaction. They are dependent on routines and can have higher sensitivity to sensory stimuli than other children. These children are one group who constitutes special challenges in reducing anxiety and creating participation in a high technology environment. This can make them prone to frightening encounters in health care settings if not cared for with special consideration.Aim: The overall aim of this thesis was to audit and enhance the care of children in a high technology environment in the health care system with a focus on children with Autism Spectrum Disorder.Methods: A descriptive design was used with both qualitative and quantitative methods. In Study I, 32 nurse anaesthetists were interviewed to explore the actions and experiences of caring for children in a high technology environment using a qualitative method, known as the Critical Incident Technique (CIT). In the two following studies (Study II, III) a cross-sectional design was used and two national surveys were performed to obtain knowledge on the status in Sweden regarding the care of children with ASD in high technology environments. Sixty-eight anaesthesia departments, 38 paediatric departments and 86 radiology departments responded to the survey. Descriptive statistic was used for the answers apart from the comments part of the questionnaire where qualitative content analysis was used. Due to the limited existence of guidelines in these environments, the creation ofevidence-based guidelines was performed in Study IV, using a Delphi method. The Delphi study was based on information gleaned from the previous studies and from the literature, and 21 experts identified in Study II and III were the expert panel developing the guidelines.Result: Nurses identified children with special needs such as children with ASD as a vulnerable group in a high technology environment (Study I). Seven departments in the anaesthesia context had guidelines for caring for children with ASD in the perioperative context. In the other departments, the care of children with ASD was dependent on the knowledge of the nurse presently working there (Study II). None of the radiology departments in Sweden had guidelines on how to care for children with ASD going through a radiographic examination without anaesthesia (Study III). As a result of Study I, II and III, the need for structured guidelines for caring for children with ASD in a high technology context was identified and a set of guidelines and a checklist was created. The guidelines relate to the organisational structure for the care of children with deficits in social interaction, communication, sensory sensitivity and dependence on routines. The checklist relates to gleaning information about the specific child to be able to give person-centred care based on the specific characteristic of the child (Study IV).Conclusion: Nurses working in a high technology environment in health care have diverse experiences of preventing anxiety in children with ASD coming for a challenging procedure. There are a limited number of evidence-based guidelines to decrease anxiety and to create participation in this group ofchildren. Evidence-based guidelines were created as a tool for enhancing person-centred care in a high technology environment for this group of children. The fact that several problems are assembled under one disorder makes ASD a useful condition to have as a basis for formulating national guidelines. Guidelines that cater for the care of children with ASD in a high technology environment using a person-centred approach may also extend to the care for children with other neurodevelopmental disorders that exhibit some of the same problems as children with ASD.
|
|
| 9. |
- Henricson, Maria, 1972-
(författare)
-
Tactile touch in intensive care : Nurses' preparation, patients' experiences and the effect on stress parameters
- 2008
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Aim: The overall aim of this thesis was to acquire knowledge about whether tactile touch as a complementary method can (i) promote comfort and (ii) reduce stress reactions during care in an intensive care unit (ICU) Method: In Paper I, five nurses with a touch therapist training were interviewed about their experiences of preparation before giving tactile touch in an ICU. To analyse the meaning of preparation as a phenomenon, Giorgi’s descriptive phenomenological approach was used. In Paper II and III a randomised controlled trial was set up to investigate the effects of a five-day tactile touch intervention on patients’ oxytocin levels in arterial blood (II), on patients’ blood pressure, heart rate and blood glucose level, and on patients’ levels of anxiety, sedation and alertness (III). Forty-four patients were randomised to either an intervention group (n = 21) or a control group (n = 23). Data were analysed with non-parametric statistics. In Paper IV, six patients who had received the tactile touch intervention were interviewed to illuminate the experience of receiving tactile touch during intensive care. To gain a deeper understanding of the phenomenon and to illuminate the meaning, Ricoeur’s phenomenological hermeneutical method, developed by Lindseth and Norberg, was used. Findings: The nurses need four constituents (inner balance, unconditional respect for the patients’ integrity, a relationship with the patient characterized by reciprocal trust and a supportive environment) to be prepared and go through the transition from nurse to touch therapist (I). In the intervention study, no significant differences were shown for oxytocin levels between intervention and control group over time or within each day (II). There were significantly lower levels of anxiety for patients in the intervention group. There were no significant differences between the intervention and control groups for blood pressure, heart rate, the use of drugs, levels of sedation or blood glucose levels (III). The significance of receiving tactile touch during intensive care was described as the creation of an imagined room along with the touch therapist. In this imagined room, the patients enjoyed tactile touch and gained hope for the future (IV). Conclusion: Nurses needed internal and external balance to be prepared for providing tactile touch. Patients did not notice the surroundings as much as the nurses did. Patients enjoyed the tactile touch and experienced comfort. The impact on stress parameters were limited, except for levels of anxiety which declined significantly. The results gave some evidence for the benefit of tactile touch given to patients in intensive care.
|
|
| 10. |
- Hollman, Gunilla, 1953-
(författare)
-
Living with familial hypercholesterolaemia
- 2003
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The aim of this thesis was to describe quality of life 1) in patients with heterozygous familial hypercholesterolaemia (FH), a genetic disorder with an increased risk of coronary heart disease (CHD), 2) in family members of patients with FH. Furthermore, the aim was to analyse the extent to which treatment goals were achieved, as well as adherence and disease knowledge in patients with FH. In order to describe quality of life, anxiety, depression and coping, patients with FH (n=185) and their non-affected family members (n=129) without FH completed the following questionnaires: the Quality of Life Index (QLI), the Hospital Anxiety and Depression Scale (HAD), the Mastery Scale and a questionnaire on health and lipids. A reference group (n=I485) completed the same questionnaires on quality of life, anxiety, depression and coping. In order to describe quality of life from a deeper perspective and identify its meaning, patients with FH (n=12) were interviewed and data were analysed according to the grounded theory method, using constant comparative analysis. The extent to which treatment goals had been achieved was documented (n=74) and patients completed a questionnaire on adherence and knowledge about FH (n=68). The patients were more satisfied with overall quality of life, family life, socio-economic life and psychological/spiritual life than the reference group, (p<0.05). Of the patients, 86 % felt anxiety about contracting CHD. Family members, particularly partners, were more satisfied with family life and psychological/spiritual life than the reference group, (p<0.05). Anxiety about the affected family member contracting CHD was expressed among 91% of the family members. The meaning of quality of life was harmony in life. Cognizance of the threat of CHD, impending mortality, satisfaction and togetherness were balanced to reach harmony in life. The treatment goals for low-density lipoprotein (LDL) (<3.0 mmol/L) and total cholesterol(<5.0 mmol/L) were reached in 23 % and 22 % of the patients, respectively. Adherence to medical treatment was significantly higher in patients who had reached the treatment goal for LDL cholesterol (< 3.0 mmol/L) than those on treatment with a LDL cholesterol ≥ 3.0 mmol/L, (p < 0.05). Out of 11 possible correct answers, there was a mean of 6.8±2.2 correct answers on knowledge about FH. Patients' knowledge was best with regard to what cholesterol is, self-care prevention and reason for drug treatment. Sixty-six percent of the patients did not know about the chance of getting FH and 79 % had no knowledge of the family history of FH. Quality of life in patients with FH and their family members was at least as good as in the reference group. In order to decrease the anxiety among patients and their family members, it is important to meet them at their knowledge level, to support understanding of FH, its risk and treatment, thus facilitating living with harmony in life.
|
|
