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- Liljeroos, Maria
(författare)
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Caring needs in patient-partner dyads affected by heart failure : An evaluation of the long-term effects of a dyadic psycho-educational intervention
- 2017
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: As medical treatment has improved, patients with heart failure (HF) now live longer and care mostly takes place at home with partners providing the main assistance. Taking care of an ill or disabled individual imposes a well-documented burden on the partner’s healthrelated quality of life. The awareness of partners’ burdensome situation is increasing, but few interventions have targeted the needs of patientpartner dyads with HF. The results have been inconclusive and give no clear guidance on how interventional programmes should be designed to improve both patient and partner outcomes.Aim: The overall aim of this thesis was to evaluate the effects of a psychoeducational intervention delivered to patient-partner dyads with HF during long-term follow-up, and to explore the dyads’ perceived caring needs.Methods: The thesis is based on four papers that used both quantitative and qualitative data. Study I and II used a randomized controlled design with a follow-up assessment after 24 months including 155 patientpartner dyads. The control group received care as usual. The intervention group received care as usual, and in addition they participated in the nurse-led psycho-educational intervention. Data was collected using questionnaires before and 24 months after the intervention, in order to determine the long-term effects on patients and partners regarding health related quality of life, perceived control, symptoms of depression and partners’ caregiver burden (I, II). A conceptual health promotion model inspired the intervention. To describe how the model was applied, a qualitative approach analysing nurses’ documentation of the sessions with 71 dyads in the intervention group (III) was used. Study IV has an explorative design. To further explore the dyads’ perceived caring needs, focus groups interviews with 19 patient-partner dyads with heart failure (IV) were performed.Results: The intervention did not have any significant effect on physical or mental health- related quality of life, depressive symptoms, or perceived control over the heart failure among the dyads (I) or caregiver burden in the partners (II) after 24 months. Furthermore, time to first event did not differ significantly between the dyads in the intervention group and the control group (I, II). As for the partners, both the intervention and control group reported decreased physical health between the baseline assessment and the 24-month follow-up (I). The intervention was composed of three components; 1) cognitive 2) supportive, and 3) behavioural component. The analysis of the nurses’ documentation confirmed the coverage of all the components and the analysis revealed a vide range of caring needs among the dyads (III). The dyads described a need to learn about HF to be able to manage everyday life. Regular outpatient clinic visits and access to telephone support were vital and both the patient and the partner need to be present at the clinic visits. Meeting others who are in the same situation and sharing the burden in nurse-led group sessions was proposed as an opportunity to support each other and others (IV).Conclusions: Over the 24-month follow-up period, the intervention had a neutral effect on health- related quality of life, depressive symptoms and perceived control over the HF among the dyads, and on partners’ caregiver burden. Considering the fact that partners serve as a critical extension of the formal healthcare system, and that both patients and partners ask for more support, it will become crucial to find new ways to support dyads affected by heart failure. This thesis may be viewed as a first step in trying to understand dyads’ perceived caring needs, and it can serve as a guide in clinical work and when designing new dyadic interventions.
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| 2. |
- Schröder, Agneta, 1957-
(författare)
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Quality of Care in the Psychiatric Setting : Perspectives of the Patient, Next of Kin and Care staff
- 2006
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim of this thesis was to describe quality of care from different perspectives in the psychiatric setting, to develop an instrument for measuring quality of care from the in-patient perspective and to use this instrument empirically. A qualitative descriptive design involving a phenomenographic analysis was used in Studies I, III and IV, and a descriptive and comparative design with statistical analysis in Study II.In Study I, 20 patients were interviewed. The results showed that quality of care was perceived as a positive, normative concept namely as good quality of care. Five descriptive categories emerged: the patient’s Dignity is respected; the patient’s sense of Security with regard to care; the patient’s Participation in care; the patient’s Recovery; and the patient’s care Environment. In addition, two conceptions that had not explicitly emerged in previous studies on quality of care were identified: Being helped to reduce the shame and Being looked upon as like anyone else.In Study II a definition of quality of care from a patient perspective was formulated on the basis of the results in Study I. A two-part instrument the Quality in Psychiatric Care (QPC) was developed for measuring the patients’ expectations regarding quality of care (QPC-1) and their subsequent experience of it (QPC-2). One hundred and sixteen patients answered both parts of the instrument. Overall, the quality of care was rated high in both parts. However, experienced quality of care was significantly lower than the patient’s expectations in all the dimensions of the instrument: Total dimension, Dignity, Security, Participation, Recovery and Environment. Patients who perceived that the time of discharge was consistent with the stage of their illness experienced significantly higher Recovery; patients with good psychiatric health also experienced this, but had in addition significantly higher levels of Participation. This new instrument exhibited too high Cronbach’s alpha values (QPC-1 0.87–0.98, QPC-2 0.85–0.98), which means the instrument needs to be further tested in order to improve its psychometric properties.Twelve next of kin were interviewed in Study III. The next of kin described quality of care mainly from their own perspective, but also to a large extent from the patient’s perspective as well. They described it in both positive and negative terms. Five descriptive categories resulted: Dignity, Security, Participation, Recovery and Health-promoting surroundings. Good relations and communication between staff, patients and next of kin emerged as the central factors regarding the quality of care. The next of kin asked for information about mental illnesses and wanted to co-operate and participate in the patient’s care. They avoided telling others about their family member’s psychiatric illness because of a feeling of shame and guilt.In Study IV, 20 care staff and care associates were interviewed. They described quality of care both from the patient’s perspective and from a professional perspective. They perceived the concept as a positive one and as being of great importance for the patient’s health and life situation. Four descriptive categories resulted: the patient’s Dignity is respected; the patient’s Participation in the care; the patient’s Recovery; and the patient’s care Environment plays an important role.The main contribution of this thesis with regard to the concept of quality of care in the psychiatric setting is its emphasis on the significance of the different perspectives described above, as such knowledge is vital when planning and implementing and evaluating quality of psychiatric care. In addition, the descriptive categories that emerged in this thesis clearly highlight the importance of interpersonal relationships in the care situation. The new instrument (QPC) needs psychometric testing before it routinely can be used as a self-rating instrument for the purpose of improving psychiatric inpatient care and help guide the proper allocation of care resources.
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| 3. |
- Widar, Marita, 1943-
(författare)
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Living with Long-Term Pain after a Stroke
- 2003
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The general aim of this thesis was to classify and describe long-term pain two years after a stroke and to describe the experiences of pain, and the consequences it has on the persons’ lives. The studies were conducted from a multidimensional perspective on pain, combining quantitative and qualitative methods. Three types of long-term pain were classified and described among the 43 participants included, aged 33-82 years. These were central post-stroke pain, nociceptive, mainly shoulder pain, and tension-type headache. Pain onset, within one to six months in most of the cases was after discharge from the hospital. Continuous pain or pain almost every day was reported by nearly two-thirds. The pain was mostly described as troublesome, annoying and tiring in all pain groups. The rating of pain intensity revealed individual differences among the participants within the pain groups. In addition to long-term pain, the participants suffered several impairments and nearly half of them were dependent on others, and two-thirds on assistive devices. Several coping strategies were described, most often problem-focused. Their health-related quality of life was decreased, mostly related to their long-term pain and physical impairments. Their experiences of caring revealed the need of improvements in knowledge about longterm pain, attention and understanding among the professionals, and continuity in the contacts.
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