Women's perspectives on home‐based care for family members with chronic illness: An Interpretive phenomenology study

Abstract

The number of people with chronic illness who need home-based care is increasing globally. Home-based care is socially constructed to be work carried out by women. However, little attention has been paid to the opinions of middle-aged women caring for family members with chronic illness at home. In this study, Thai women's perspectives on home-based care for family members with chronic illness using interpretive phenomenology were identified. Fifteen middle-aged women were interviewed twice, and the data were analyzed using thematic analysis. Four major themes emerged: (i) role obligation; (ii) social life change; (iii) doing good things; and (iv) lack of support. Important findings were that care was considered a woman's duty owing to cultural beliefs. Most participants sacrificed their own needs to care for others, as doing good things is considered an important Buddhist belief. Caring for others decreased women's social networks, but they cared more for their own health. Support with finances, information, workplaces, and care recipients should be provided to women with care responsibilities. These results can help nurses to better understand women's caring roles and the consequences of home-based care that influence woman's health.

Relationships between depression, family function, physical symptoms, and illness uncertainty in female patients with chronic kidney disease

“…Depression was greater in female patients with CKD when family function was poorer, although family function did not predict depression in the current study. In Asian cultures, if there is a chronic illness in the family, the mother is traditionally responsible for much of the care (Arpanantiku, 2018 restrictions, medications, dialysis treatments, and so forth as part of a conservative treatment regime. Despite these efforts, when physical symptoms increase in severity, the patient may experience increased uncertainty due to the ambiguous and unpredictable nature of the disease, and stress experienced during the course of treatment may increase (Byun, Riegel, Sommers, Tkacs, & Evans, 2016).…”

Cultural and societal motivations for being informal caregivers: a qualitative systematic review and meta-synthesis

“…There is a difference between how caregivers from Japan perceive and function in a role of a caregiver due to the cultural norm of primogeniture Yamamoto & Wallhagen, 1997) and how Mexican women assuming the value of 'marianismo' (pertaining to the 'selfsacrificing mother' in relation to Mother Mary in Christianism) approach the same role. The examples could be multipliedto mention a few such as the Thai concept of 'Kathany ukatawethi' (Sasat, 1998), Japanese 'Mirutachiba' or other essential cultural values present in philosophical and religious systems Arpanantikul, 2018;Han et al, 2008;Hinton et al, 2008;Kietzman et al, 2013;Kong et al, 2010;Meyer et al, 2015;Ng et al, 2016;Park, 2012;Park, 2015;Qiu et al, 2018;Sasat, 1998;Spitzer et al, 2003;Strumpf et al, 2001;Sung, 1994;Yamamoto & Wallhagen, 1997;Zhang & Lee, 2019) that shape motivations to provide care. It is important, therefore, not to lose sight of the unique and diverse influences on caregiver motivations including those at a more 'macro' level than often considered.…”

“…In relation to the awareness of the role, it is important to highlight that assumptions that care is given 'out of love' and as an unquestioned part of existing relationships, norms and values can result in caregivers and those around them, not recognising the role they carry out and not identifying with the caregiver role. Meta-synthesis findings demonstrate that real or perceived pressure from other people (including family and care professionals) left little choice when undertaking the caregiving role, and that deviation from societal expectations was expected to elicit negative consequences Arpanantikul, 2018;Bäckström & Sundin, 2010;Han et al, 2008;Knight et al, 2016;Kong et al, 2010;Kristanti et al, 2019;Leichtentritt et al, 2004;Qadir et al, 2013;Van Sjaak Geest, 2002;van Wezel et al, 2016;Yamamoto & Wallhagen, 1997;Zhang & Lee, 2019). As shown, caregiving is often shaped during socialisation and thus the role may be assumed 'naturally' without conscious thought (Qiu et al, 2018).…”

Caregivers' experiences of patients with moderate‐stage Alzheimer's disease: a qualitative study

“…Care coordination involves rearranging social relations and precautions for social isolation and impairment in the caregiver's well-being. 14,29 Caregivers expect support from their siblings (especially offspring caregivers), feel lonely, 14 and face problems and conflict in the family. 30 Refraining from care is linked with a lack of family members' information about the disease, disease management, progress, care, and underestimation of care.…”

“…Care coordination involves rearranging social relations and precautions for social isolation and impairment in the caregiver's well‐being 14,29 . Caregivers expect support from their siblings (especially offspring caregivers), feel lonely, 14 and face problems and conflict in the family 30 .…”