Pediatric obsessive-compulsive disorder (OCD) is a heterogeneous disorder associated with functional impairment and deleterious effects at the family level. Caregivers are often enmeshed in the disorder, coping with the child’s OCD-related distress and engaging in accommodating behaviors. Given the developmental level of these youth and the impactful nature of OCD, caregivers may experience considerable burden and decreased quality of life (QoL). However, extant literature on these constructs is largely limited to caregivers of patients with chronic illnesses, and the few existing studies examining OCD samples are limited to adult patients. As such, this study sought to examine burden and QoL in caregivers of youth enrolled in an intensive outpatient or partial hospitalization program for their severe OCD. Specifically, the relationships between caregiver QoL and burden and the following variables were investigated: OCD symptom severity, functioning (youth functional impairment, general family functioning), family (family accommodation, parental relationship satisfaction, positive aspects of caregiving), and comorbid psychopathology (caregiver anxiety and depressive symptoms, youth internalizing and externalizing behaviors). Seventy-two child and caregiver dyads participated in the study and completed a battery of clinician- and self-rated questionnaires. Different components of caregiver QoL correlated with caregiver-rated functional impairment, family accommodation, youth externalizing behaviors, and caregiver psychopathology. Various aspects of caregiver burden correlated with OCD symptom severity, functional impairment related to OCD, as well as caregiver and child comorbid psychopathology. Caregiver depressive symptoms predicted caregiver QoL, and caregiver depressive symptoms and child externalizing symptoms both predicted caregiver burden. Caregiver burden did not mediate the relationship between obsessive-compulsive symptom severity and caregiver QoL. Ultimately, elucidating factors associated with increased caregiver burden and poorer QoL are pertinent for the identification of at-risk families and development of targeted interventions.

Magister Scientiae (Physiotherapy) - MSc(Physio) / Neural tube defects (NTDs) are the world‘s second most common birth defects after cardiovascular defects. In developing countries, poor access to health care services among children with NTDs contributes to early infant deaths, while those who survive live with severe disabilities. In Zambia, all children with NTDs in need of surgery are referred to Lusaka and physiotherapy services are not available in health facilities below the first level hospitals. The aim of the current study was to determine the profile of children with NTDs and to explore the experiences of mothers with accessing health care services for these children. The study which was conducted at the University Teaching Hospital (UTH) in Lusaka consisted of both quantitative and qualitative methods. The quantitative phase consisted of a retrospective record review of children with NTDs, who were admitted to UTH from January to December, 2010. A sample of 50 medical records was used based on available records, and data collection was done using a data extraction sheet which was specifically designed for the study. Analysis of quantitative data was done using Statistical Package for Social Science (SPSS) version 20.0. The qualitative phase had two parts, with the first part involving in-depth interviews with a purposefully selected sample of 20 mothers of children who were admitted to UTH. The second part used a sample of convenience of four mothers who had brought their children for follow up visits. All interviews were audiotaped, transcribed verbatim and translated, and recurring ideas were coded and collapsed into categories and themes. Permission to conduct the study was obtained from the UWC Research Grant and Study Leave Committee, University of Zambia Research Ethics Committee, and University Teaching Hospital management. Informed written consent was obtained from the mothers who accepted to take part in the study. Results from the record review revealed that the majority of children were from Lusaka province, with ages ranging from one day to 48 months and a male predominance of 58%. Myelomeningocele was the most common type of NTD (44%) with the lumbar region being the common site (52%). Hydrocephalus was present in 74% of children, 30% of children had both paraplegia and incontinence and 22% (n=11) of the files had no information on the neurological impairments. Wound infection was present in 40% (n=20) of the children. The majority (66%) of children were lost to follow up. Mothers of children who were admitted in UTH cited transport to UTH and back home as the main challenge. Other challenges included the lack of a prenatal diagnosis, the need for information, uncertainty about future of their children, and concerns about their family. Interviews with mothers on experiences with accessing physiotherapy services found that the lack of knowledge among mothers was the main reason children were not accessing physiotherapy services. Findings on access to health care were related to the ―Four A‘s‖ access theory which consists of four dimensions of access namely geographical accessibility, availability, affordability and acceptability. It is recommended that health care providers and policy makers ensure that all children with NTDs are provided with free transport to and from referral hospitals. Policy makers need to consider involving physiotherapists in out-reach programmes and mobile clinics to ensure access to physiotherapy services for all children in need of the service. Health care providers must also ensure that they give adequate information to mothers of children born with birth defects as this enhances their access to appropriate health care services.

Objectives: The objectives of this thesis were to: (i) understand the experiences of parents/caregivers of children with inherited metabolic diseases (IMDs), including perceptions of the health care system; and (ii) identify important patient/family-centred outcomes for measurement in future studies. Methods: A qualitative study used semi-structured interviews to gain in-depth insight into caregivers’ experiences. In an adapted meta-synthesis study, the qualitative findings were integrated with the results of related research to identify priority outcomes. Results: Twenty-one caregivers were interviewed. Participants described adjusting to the management of their child’s illness through specific coping strategies but reported stress related to social development. While generally satisfied with disease-specific care, participants described negative experiences with non IMD-specific health services. Health-related quality of life, parental coping, and specific experiences with health care emerged as high-priority outcomes. Conclusions: This project contributes to the limited published literature on caregiver experiences with pediatric IMD and informs future patient-centred research.

Bakgrund Amyotrofisk lateralskleros är en dödlig sjukdom som påverkar såväl den drabbade som anhöriga. Anhöriga har en betydande roll då de ofta vårdar den närstående i hemmet, och på grund av sjukdomens progression kan det bli en omfattande livsförändring. Sjuksköterskor ska utgå ifrån ett palliativt personcentrerat förhållningssätt där anhöriga behöver praktiskt och emotionellt stöd. En anhörig som vårdar en person med långvarig sjukdom ska erbjudas stöd för att minska belastning och förbättra livssituationen. Syfte Syftet var att beskriva anhörigas erfarenheter av att ge stöd till en person med Amyotrofisk lateralskleros. Metod En litteraturöversikt med elva vetenskapliga artiklar användes. Artiklarna hämtades från databaserna Cinahl Complete och PubMed. Artiklarna analyserades med stöd av Fribergs analysmodell. Resultat Tre teman identifierades i resultatet: (1) Inre känslor, (2) Förändringar inom familjen och (3) Hälso- och sjukvårdspersonalens påverkan. Två underteman framkom: Förändrade familjerelationer och Förändrade roller. Sammanfattning Litteraturöversikten visade att det fanns ett behov av information och stöd från sjukvården och övriga anhöriga. Att vara anhörigvårdare medförde en känslomässig påverkan på grund av hög belastning och ansvarskänslor. Sjukdomen bidrog till förändringar inom familjen så som förändrade familjerelationer och nya roller och anhörigvårdare upplevde olika utmaningar som att bibehålla en normal vardag och åsidosätta sina egna behov. / Background Amyotrophic lateral sclerosis is a deadly disease that affects both the person affected by illness and their relatives. Relatives have a significant role as they often provide care for the person at home, and due to the progression of the disease there can be an extensive life change. Nurses shall focus on a palliative person-centered care where relatives need practical and emotional support. A relative who cares for a person with a long-term illness must be offered support to reduce the burden and improve the living situation. Aim The aim was to describe relatives’ experiences of providing support to a person with Amyotrophic Lateral Sclerosis Method Literatur review with eleven scientific articles were used. The articles were retrieved from the databases Cinahl Complete and PubMed. Friberg’s analysis model were used to analyze the articles. Results Three themes were identified in the result: (1) Inner feelings, (2) Changes within the family and (3) The impact of health care professionals. Two sub-themes emerged: Changed family relationships and Changed roles. Summary The literature review showed that there was a need of information and support from the healthcare system and other relatives. Family caregivers experienced an emotional impact due to high workload and feelings of responsibility. The disease contributed to changes such as changing family relationships and new roles, and family caregivers experienced various challenges such as maintaining a normal everyday life and overriding their own needs.

End-of-life (EOL) care decisions present a challenge for family caregivers. Despite the increasing number of terminally ill patients in need of pain management and comfort care, there is limited qualitative data about how populations in the developing world can access culturally appropriate resources and EOL support. In this phenomenological study, 17 Garifuna family caregivers in southern Belize were interviewed about their experience caring for terminally family members. The conceptual frameworks were Kübler-Ross’s hospice approach and Watson’s theory of human caring. The two theories were selected based on their significance to this process: Kübler Ross’s hospice approach and its impact on the family system during the end stage of life and Watson’s theory of human caring for its emphasis on the impact of the importance of meeting the basic needs of individuals. NVivo 12 was used to code and generate themes for further analysis. Caregivers who said they would not utilize support outside of the home were those who were committed not do so at the request of the patient. Caregivers who cared for their family member and those who could financially afford to hire caregivers in their home to assist with their relative said they would not utilize nonfamily support. All others, regardless of relationship to the patient, indicated they would have accepted care if the environment were safe, caring, and culturally sensitive. Additionally, the caregivers saw their needs as secondary and insignificant compared to the comfort and care of the patient. This study may contribute to positive social change by revealing strategies and services that could be included in the design of a health services delivery system to meet the needs of individuals facing EOL decisions.

No description available.