Scand J Caring Sci; 2020; 34: 267-279. Dombestein H, Norheim A, Lunde Husebø AM.Understanding informal caregivers' motivation from the perspective of self-determination theory: an integrative review.Background: A long-term illness is stressful both for the person with the diagnosis and for his or her informal caregivers. Many people willingly assume the caregiving role, so it is important to understand why they stay in this role and how their motivation affects their health. Self-determination theory (SDT) is a theory of human motivation that has been successfully applied in human research domains. To our knowledge, there is no literature review on the application of SDT in a caregiver context. A systematic review of the literature could improve the understanding of motivation in caregiver work and contribute to the utility of SDT. Aim: To describe and explore empirical studies of caregivers' motivation from the perspective of self-determination theory. Methods: An integrative literature review according to Whittemore and Knafl was conducted with systematic repetitive searches in the MEDLINE, Scopus, PsychInfo, PsycNET, Chinal, Cochrane Library and EMBASE databases. The searches were performed from May through December 2018. The PRISMA diagram was used for study selection, and papers were assessed for quality based on the Mixed Methods Appraisal Tool. Data analysis consisted of a four-stage narrative analysis method. Result: Of 159 articles, 10 were eligible for inclusion. All studies considered satisfaction of the three basic psychological needs for competence, autonomy and relatedness as essential in predicting the quality of caregivers' motivation and thereby their well-being. In this review, autonomous motivation was the most important determinant of caregivers' well-being. Conclusions: Findings showed that SDT can be applied to identify, categorise, explain, predict, promote and support motivation among caregivers. This lends interesting support for SDT and promotes further study and application of the theory as a psychological approach to caregivers' health and health promotion.

Dementia is recognized as a public health priority because an estimated 50 million people are living with dementia worldwide (WHO, 2019). Most of these persons experience that dementia leads to increased impairments affecting memory, personality, meaningful activities, social contacts and self-care (Bjørkløf et al., 2019). Dementia symptoms can disrupt collaboration between patients and healthcare professionals. For this reason, focus often shifts to informal caregivers and relatives who become important resources for both the person with dementia (PWD) and the professionals (Garcia-Ptacek, Dahlrup, Edlund, Wijk, & Eriksdotter, 2019). Therefore, it is necessary for nurses and other healthcare professionals to be aware of caregivers' situation to identify potential

PurposeResilience in healthcare is fundamental for what constitutes quality in healthcare. To understand healthcare resilience, resilience research needs a multilevel perspective, diverse research designs, and taking advantage of different data sources. However, approaching resilience researchers as a data source is a new approach within this field and needs careful consideration to ensure that research is trustworthy and ethically sound. The aim of this short “backstage” general review paper is to give a snapshot of how the Resilience in Healthcare (RiH) research program identified and dealt with potential methodological and ethical challenges in researching researcher colleagues.Design/methodology/approachThe authors first provide an overview of the main challenges and benefits from the literature on researching researcher colleagues. Second, the authors demonstrate how this literature was used to guide strategies and principles adopted in the RiH research process.FindingsThe paper describes established principles and a checklist for data collection and analysis to overcome potential dilemmas and challenges to ensure trustworthiness and transparency in the process.Originality/valueMining the knowledge and experience of resilience researchers is fundamental for taking the research field to the next step, and furthermore an approach that is relevant across different research fields. This paper provides guidance on how other research projects can approach researcher colleagues in similar ways to gain new insight, build theory and advance their research field based on insider competence.

Background It is often seen as demanding to be an informal caregiver of a home-dwelling relative or friend with a long-term illness. Adult-child caregivers are important resources for both their ill parents and their community healthcare services. Dementia is one of the most severe chronic long-term illnesses and represents comprehensive challenges for public health in Norway as in the rest of the world. Research within the caregiver field has generally focused on primary caregivers, the burden of taking on the caregiver role, and interventions to improve health outcomes. Less research has been devoted to understanding how secondary caregivers, such as adult children, remain motivated and how they experience community healthcare services, applying recent theoretical approaches such as self-determination theory and relationship-centred care. Therefore, the overall aim of this thesis was to gain a deeper understanding of adult children’s motivations to remain in the caregiver role when parents with dementia live at home. Methodology The current PhD project applies a qualitative multi-method design including the following three methods: 1) an integrative literature review of the previous research literature concerning the motivation of caregivers of persons with long-term illnesses, 2) individual face-to-face semi-structured interviews with 21 adult-child caregivers who had home-dwelling parents with dementia, and 3) focus group interviews with 15 of the adult-child caregivers who had been individually interviewed. Analyses were conducted using narrative analysis and systematic text condensation. Findings There is consistency between caregivers of persons with long-term illnesses and persons with dementia, describing their quality of motivations and how they experienced being caregivers. High-quality motivation depends on the satisfaction of the caregivers’ three basic psychological needs for competence (understanding of diagnosis, management of symptoms, problem solving, communication skills, knowledge of appropriate healthcare services), autonomy, (available options, planning, freedom of choice regarding tasks), and relatedness, (interacting with parent with dementia and others, being part of the care team, mutual respect, acknowledgement, dialogue, belonging, meaning something to others). Thwarting those psychological needs could lead to amotivation. The main issues thwarting caregivers’ motivations include parents being resistant or refusing to receive community healthcare services, challenges in getting access to timely healthcare services, and not being appropriately involved in their services. Still, caregivers of persons with dementia often prioritised their parents’ needs over their own. The literature review found the three needs of competence, autonomy, and relatedness to be equally important in predicting the quality of caregivers’ motivations and thereby their well- being, as according to the self-determination theory. From the perspective of adult-child caregivers, these basic needs were confirmed as motivational drivers when caring for a home-dwelling parent with dementia. Yet, they reported relatedness as their main motivational driver, including relations with their parents with dementia, with persons in their social network, and with their parents’ community healthcare services. Caregivers wanted to be acknowledged as competent partners in the care team who utilise significant efforts to improve the home-dwelling period for their parents. These findings imply that healthcare professionals should value the importance of relatedness when interacting with caregivers of persons with dementia. Conclusion By applying self-determination theory combined with a relationship-centred care approach, this thesis offers a deeper understanding of caregivers’ motivations in the long-term illness context and, in particular, in caring for persons with dementia. A caregiver’s motivation is described along a continuum representing different qualities of motivation. Addressing caregivers’ motivations is necessary, as the quality of their motivations for caregiving has consequences for their health and well-being. Caregivers’ motivations to remain in this type of role are closely related to satisfaction or thwarting of their basic needs for competence, autonomy, and relatedness. To remain motivated throughout a parent’s trajectory of dementia, support to fulfil the three needs is required. Dyadic improvement efforts addressing both caregivers’ and patients’ needs are recommended.

Motivation to provide care is a significant predictor of informal caregiving among family caregivers of persons with dementia. Adequate support is an important source of help and relief to caregivers, but fragmentation of dementia care services is common and better ways of supporting these caregivers are needed. Knowledge of adult-child caregivers' motivation and how this motivation is influenced by community healthcare services is lacking. The aim of this study is therefore to describe and explore adult children's experiences with community healthcare services for their homedwelling parent with dementia and how these influence their caregiver motivation.